HONEST ANSWERS SOUND ADVICE A OUN ERSONS

1 CONTENTS HI THERE…

FINDING OUT LIFE STUFF We’ll be honest, we wish you weren’t 2 Intro - Hi there... 104 Dealing with relationships 4 Hearing the news 107 Brothers and sisters reading this. We’re sure you do too. 5 Take a deep breath 109 Friends 7 So what is cancer anyway? 112 Boyfriends and girlfriends But seeing as you are, we really 8 The big questions answered 116 Telling your kids 11 Getting the right information 118 Talking is tough hope this book will come in useful. 16 Beware of Google 120 Choosing who to tell 18 Notes 122 School and studying It’s based on what other young people So as well as explaining the medical MED STUFF 125 All about work 128 Getting away from it all have told us they wanted to know stuff, we’ve covered a lot more here too: 20 Which cancer is that? 131 Legal stuff, money stuff when they found out they had cancer. from working through your emotions to 24 Tests, tests and more tests 134 Notes And young people who’ve had or have speaking to your friends to dealing with 30 Treatments deciphered cancer helped us put it together. changes to your appearance. 35 Get hooked up BEYOND CANCER 38 Give it to me straight: does it hurt? 136 Getting back to ‘normal’ You’ve probably got a whirlwind of And, in case you have times when you 40 Who’s the boss? 139 Relationships after cancer questions going round your head at the just don’t feel like talking, we’ve included 42 Clinical Trials 142 Late side effects moment, and getting diagnosed with some cards at the back that might come 46 Side efffects - The truth 144 If cancer comes back cancer doesn’t suddenly stop you being in handy. 54 Who’s that? 146 When treatment is unlikely who you are. 58 Staying in hospital to cure cancer 63 Transition 150 Let it all sink in 66 Staying healthy 152 Notes 69 Drugs and alcohol HANDY STUFF 71 Let’s talk about sex 154 Glossary 74 Fertility 159 Don’t feel like talking? 76 When to worry These cards can help 79 Notes 178 Useful contacts HEART STUFF 179 Notes 80 Let’s talk about feelings 181 How we produce our information 84 Coping strategies uncovered 182 Acknowledgements 86 Grief and loss 88 Is that really me? 90 Dealing with losing someone 92 If it all seems too much 98 Religion and spirituality 100 Not a saint? That’s just fine 102 Notes UU 2 Why this book isn’t a book And while you shouldn’t think of it as a We’ve not really designed this to be replacement for your care team – who

read from cover to cover like a normal should always be your first point of OUT FINDING book. Instead, it’ll hopefully become contact if you’re worried about anything something you dip in and out of when or have any questions – we hope it’ll you’ve got something on your mind. help you get your head around what’s Some sections might be relevant to you going on, because we’re here to do now, others might not be. You might be everything we can to help. more interested in the stuff at the back FINDING than the front. Take care of yourself, and let us know any thoughts about this book at: So use it however suits you. Stick it in [email protected] your bag. Fill in the sections for your notes. Scribble in the margins. Tear The Teenage Cancer Trust Team out the cards. Use it to write down the OUT mobile numbers of people you meet during your treatment. We’d love this book to end up looking pretty tattered.

Want to know more than we can fit in this book? There are some Useful contacts on page 178.

3

FINDING OUT

YOU’RE REMEMBER is to helpyou get through this. you’ll meet plenty ofpeople whosejobit support available to helpyou cope and that you’re notalone. There islotsof But it’s really important to remember head around this. and itwilltake timeto start getting your There’s noright orwrong way to feel, that you finallyknow what’s wrong. of your voice. Oryou might feel relieved and scream ‘IT’SNOT FAIR!’ at thetop might want to gosomewhere by yourself to random peopleonthestreet. You meet; from your parents to your doctors You might want to blameeveryone you and struggle to focus oneveryday life. or scared. You might feel overwhelmed You might feel numb, confused, angry completely, 100%natural. Whatever you’re feeling isabsolutely, no right orwrong way to respond. Everyone reacts differently, andthere’s whole worldupside-down. you havecancercanturnyour The momentwhenyou’retold THE NEWS HEARING definitely notalone. lonely right now –we guarantee you’re And never forget –even ifyou’re feeling stupid. Just keep onasking. embarrassed orworry aboutsounding complicated medicalinfo. Sodon’t feel anxious orupset –let alonewhenit’s 20% ofwhat they hearwhenthey’re for peopleto take inmore thanabout explaining thingsalotoftimes.It’s hard Doctors andnurses are usedto you know what you needto know. idea. Just keep askingquestions until don’t understand, well… you get the understand, ask again.Andifyou still understand, ask again.Ifyou still don’t ask. Ifyou forget theanswer ordon’t help withsomething, don’tbeafraid to So ifyou have questions oryou need there for you too. Your family andfriendswillwant to be 4 TAKE A DEEEEEEP BREATH

Go on. Fill your lungs. Blow out slowly. MOST YOUNG PEOPLE have cancer, but they’re all wrong. SURVIVE CANCER Absolutely, definitely wrong. Parents and Breathe in again. Repeat ten times, It’s true, and the good news doesn’t friends often feel guilty too – but they’ve end there – survival statistics are getting not caused this either. and then read this section. better all the time as new ways of treating and diagnosing cancer are THERE’S NO ‘NORMAL’ WAY TO FEEL being discovered. Everyone reacts differently to a cancer It can feel impossible to focus on YOU’RE NOT ALONE diagnosis – there’s no right or wrong anything when you find out you No one will feel exactly the same as way to respond. So whatever you’re have cancer, but pausing for a you. But there is a huge amount of going through, remember that it’s minute and reminding yourself of support available and there are lots of completely understandable. And try to the facts in this section might help other young people who are living with be open about your feelings if you can; you breathe a little easier. cancer, too. Turn to page 178 for useful bottling things up probably won’t help. organisations that can help you hear For more information on talking if times and share experiences. get tough, turn to page 118.

IT’S NOT YOUR FAULT HOPE CAN BE POWERFUL Absolutely, definitely not. We’ll keep Hang on to hope. No matter how tough telling you that throughout this book. things get, hope can be a powerful tonic. A lot of young people think they might So never give it up. be to blame when they find out they

THIS ISN’T YOUR FAULT - AND WE’LL KEEP TELLING YOU THAT THROUGHOUT THIS BOOK

65 67 SO WHAT THE BIG ? IS CANCER QUESTIONS ? ANYWAY? ANSWERED

There are more than 200 You probably have hundreds of different types of cancer, ?? questions on your mind right now. but they all come down to the This book should answer a lot of same thing: cells acting weirdly. them, starting with some of the ones we hear the most. Our bodies are made up of billions of Benign tumours tend to grow more cells. Brain cells. Nerve cells. Muscle cells. slowly and are less likely to come back Bone cells. Gland cells. Reproductive if they’ve been completely removed. HOW DID I GET CANCER? Cancer itself is actually pretty common. cells. Everywhere you look in the human They very rarely spread to other parts We’ve said it before and we’ll say it Around one in two people in the UK will body, you’ll find cells – they’re our of the body, but if they haven’t been again. Cancer is a lot of things, but it’s be diagnosed with it at some point in building blocks. completely removed they can sometimes not your fault. their lives. But what’s less common is start growing again after treatment. getting it when you’re young. Normally, cells grow and divide to make Maybe you’re worried about things more cells only when the body needs Malignant tumours tend to grow you’ve done, like smoking or drinking People aged between 13 and 24 make up them. This keeps the body healthy, faster. They sometimes spread to other or taking drugs. These things do have fewer than 1% of cancer cases diagnosed because damaged cells get replaced parts of the body and may come back links to cancer, but there’s almost no in the UK each year. So while there’s nice and quickly. after treatment. chance of them causing cancer in absolutely no need for you to feel guilty young people. right now, it’s understandable if you’re Sometimes, though, things get weird. And some cancers, like leukaemia, don’t feeling pretty annoyed. Cancer sucks. New cells are produced when they’re form tumours at all, but affect the bone Spending too much time in the sun not needed, and this can cause a mass marrow (the spongy stuff inside your can put you at risk. So can having of tissue called a tumour to develop. bones that produces blood cells) or unprotected sex, as a virus can be the blood. passed on that can lead to cervical TYPES OF TUMOUR cancer. But the simple, seriously unfair, Tumours can be benign or malignant. You can find out more about truth is that cancer can just happen. The benign ones aren’t cancerous. some of the most common The malignant ones are. types of cancer on page 20.

87 8 WILL IT HURT? This is probably one of the biggest questions on your mind. And the short answer, unfortunately, is that some of your treatments – or the side effects of those treatments – might hurt.

Some tests – like biopsies, lumbar punctures and bone marrow tests – can be painful, and you might be offered an anaesthetic or painkillers before any But the short answer to this question is of these. Treatments like surgery and that you can talk to whoever you feel chemotherapy can cause mouth sores, comfortable talking to. That might be joint pain and other types of pain too. your friends, your family, your doctors And tumours can hurt as well, though and nurses, a psychologist or counsellor, treatment should reduce this. or a support group made up of other young people who have cancer. Your doctors and nurses can help you deal with pain – but only if you let them It’s up to you – but speaking to people know you’re hurting, so don’t keep it to can really help you deal with issues. So yourself. Painkillers can make it easier to if you’re usually the strong silent type, keep doing the things you enjoy. it might be a good idea to think about becoming the strong slightly-more- In pain? Don’t tough it out. talkative type. Let your doctors and nurses CAN CANCER BE CURED? it is and how advanced it is – but that’s know – they can help. HOW LONG DOES The short answer to this one is yes. If never an easy thought to deal with (not TREATMENT TAKE? WHO CAN I TALK TO? your doctor tells you you’re in remission, that you need us to tell you that). This one isn’t easy, because everyone that means you’re no longer showing Cancer can be hard on your mind as is different and everyone’s cancer the signs or symptoms of cancer. Cancer It’s OK if you feel scared, in fact it’s very well as your body, which is why we’ve is different. Your treatment could treatments are improving all the time common. Your doctor will be able to tell dedicated a whole section of this book be finished after one operation or it too, as more research is done into what you the truth about your situation, so if to ‘Emotional stuff’, starting on page 80. could last for a few years. You might causes it and what can get rid of it. you want to know more, just ask. And meet people who have the same type try to remember that there is a huge of cancer as you but are having less But it’s also true that sometimes cancer amount of support out there for you, treatment – or more. There’s no can’t be cured. A lot of factors affect this so you never have to face cancer alone. set formula. – like the type of cancer you have, where Your medical team will look at your individual situation and devise a treatment plan that’s right for you. It’s THERE IS A HUGE AMOUNT OF really important to understand what’s SUPPORT OUT THERE, SO YOU NEVER planned and why, so never be afraid to ask. And remember: it’s your treatment, HAVE TO FACE CANCER ALONE so you’ve got the right to be involved.

9 10 GETTING WRITE DOWN THE RIGHT WHAT YOU WANT TO INFORMATION SAY When it comes to your cancer And if you don’t understand what a treatment, there’s no such thing doctor tells you, ask for it to be explained as a silly question – and you can more clearly until you do. INFORMATION OVERLOAD It can be hard to take in everything you never ask too many questions. It can help to: hear, especially if you’re feeling stressed • Write down what you want to or worried. You’ll probably meet a lot of say beforehand If there’s something that’s stressing you If you like, you can speak to them doctors and nurses and they might use a • Share as much information as possible out or something you’re not sure about, without your parents being there. And, lot of unfamiliar words. about any symptoms or changes you’re ask your doctors or nurses. It’s your if you’re over 16, you’ll be involved in experiencing – little details can make a It can be surprising how quickly you get body, so you’ve got every right to know decisions about your treatment, too. big difference used to the lingo and even start using it what’s going on – and not knowing can SPEAKING TO DOCTORS yourself, but it’s still a good idea to: make you imagine the worst. • Take a friend or someone from your AND NURSES family with you, or maybe someone • Write down the answers you get (there It’s ok to feel nervous before asking You might want to find out every detail from your care team. Whoever you are pages for your notes throughout questions. Plenty of young people feel or to keep your knowledge basic. It’s choose, make sure it’s someone you feel this book) awkward discussing their bodies and totally up to you. If you start wanting to comfortable with who knows what you • Record conversations on your phone their feelings (so do plenty of not-so- know more as your treatment goes on, want to say and ask so you can listen to them later and just let your care team know. young people). And you might feel • Be open and honest – remember that make sure you haven’t missed anything worried about what you could find out. doctors and nurses talk to people about (don’t forget to ask people if they’re all kinds of problems all day, every day happy to be recorded, though) • Ask your doctor or nurse to repeat • Ask the doctor or nurse to draw DON’T JUST NOD IF YOU DON’T anything you don’t understand what they’re talking about if it’s not UNDERSTAND – ASK PEOPLE making sense Everyone on your care team should listen • Keep this book handy – especially TO SPEAK IN PLAIN ENGLISH carefully and answer all of your questions. the glossary on page 154 – so you But if you don’t feel you’re being listened can double-check anything you to, say so or ask to see someone else. don’t understand!

1211 12 QUESTIONS & MORE QUESTIONS About your feelings Here are some questions you might want • How could cancer affect ym emotions? A QUICK NOTE ABOUT to ask. There’s a handy space on the • Who can I talk to if I’m feeling low? next page to write down answers and • What counselling support is available? any more questions you think of, too. THE CANCER REGISTRY • What support groups could I join?

About your cancer When you are diagnosed with cancer records, there are strict rules to keep the • How do you know I have cancer? Staying in control some information about you is collected information safe and secure. Talk to your • Are there other treatment options in a national database, called the cancer care team if you’ve got any questions • What kind of cancer do I have? that might work? registry. Your hospital passes on your about the registry. If you want to opt • Which part/parts of my body • Am I able to choose where I go information automatically, unless you out, you need to contact the registry in are affected? for treatment? ask them not to. The NHS and other your part of the UK. Your care team can • How serious is it? • What happens if I don’t have organisations use this information for give you details. • What will it do to me? the treatment? your care, or for health and social care planning or research. Like all medical • Will it spread? • Who will be involved in making • Will it hurt? decisions about my treatment? • Will you include me in conversations with my parents? About your treatment OVER TO YOU • What tests are you going to do? • Can I talk to you without my parents if I want to? • What’s the best treatment for me? • Can I get a second opinion about • What’s involved? Write your answers here, along with any other questions you think of. my treatment? • Will it hurt? • Who can my family and friends • What are the possible side effects? talk to if they are feeling anxious? • How long will the treatment last?

• Will I need to stay in hospital? After treatment • What are the chances of the • What will happen after I finish treatment working? my treatment? • How will we know if it’s working? • Could the cancer come back? • Have you given people this treatment • Are there any long-term side effects? before, and how old were they? • Is there any new research that might Practical questions affect my treatment, or any clinical • Will I be able to stay in education trials I could take part in? or keep working? • Will I qualify for any benefits or financial support? • Is there anything special I should be doing, eating, reading etc? ? 14 13 ? 14 OVER TO YOU BEWARE OF GOOGLE! A bit more space for your questions and answers.

Finding out about cancer can give you a better idea of what to expect and help you make better decisions about your treatment. But before you open your phone and hit Google, remember to click carefully.

There’s a lot of good information out lot of other useful sites. And the NHS, there, but there are also plenty of scare Macmillan, Cancer Research UK and CLIC stories – and it’s easy to get sucked in Sargent sites are all reliable places to go and freak yourself out. for info too.

These are our top five tips DON’T BELIEVE EVERYTHING for good searching: We’d love there to be a miracle cure for USE WEBSITES YOU TRUST cancer. No doubt you would too. But A lot of information online is out of date while cancer treatment is getting better or just plain wrong. So try and stick with all the time, it’s still the case that if websites you know you can trust. You something seems too good to be true, can always ask your doctors and nurses it probably is. for recommendations. And it’s a good If you find yourself reading stories with idea to look for the Information Standard headlines like ‘I cured my own cancer’ logo, which means that all information or ‘The facts the doctors won’t tell is up to date and has been thoroughly you’, tread very carefully. Ask yourself checked by a range of experts (see the who posted this story and why. People logo and find out more on page 181). upload all sorts of weird/fake/untrue For starters, we’d recommend our things to the web (no kidding…). website: www.teenagecancertrust.org Chances are the site you’re on isn’t (obviously), which has links to a whole telling the whole story.

15 16 REMEMBER THAT EVERYONE LOOK FOR BALANCE IS DIFFERENT If you read one article or site that There are a lot of very powerful stories seems very negative or very positive NOTES and blogs online written by people who about a particular treatment, check have/have had cancer. Reading them other websites to see if you get a more can be a great way to feel less alone balanced picture. A lot of people have We want you to scribble in the margins of this book whenever you and to find out what treatments are strong opinions about cancer, but that feel the need. But, in case you need more space than that, we’ve also really like. doesn’t mean they’re always accurate… included blank pages like this at the end of every section. But remember that everyone has a USE THE WEB AS A different experience of cancer. People STARTING POINT are diagnosed at different stages. The Think of the information you find online same treatments work better for some as a way to start conversations with your people than others. And your age, your parents, doctors and nurses – rather general health and a whole load of other than as the end of the conversation. things can make a difference too. Ask questions about what you find out So bear in mind that if something has and discuss it with other people to see happened to someone else, that doesn’t what they think. You might find it helps mean it’ll happen to you. to take printed articles with you when you’re meeting other people or going to appointments.

17 18 18 NOTES MED STUFF MED STUFF

19 MED STUFF in yourbodyactingstrangely. of cancer,allcausedbycells There aremorethan200types visit: more detail, askyour doctorsor ornurses, if your cancer isn’tmentioned oryou want in young peopleover thenext few pages,but We describesome ofthemost common ones IS THAT? CANCER WHICH www.teenagecancertrust.org happens less andless. cases, amputation isnecessary –butthis and thenputthebonebackin! In some cancer cells usinghighdoseradiotherapy take theaffected boneout,killallofthe metal implant. Sometimes doctors even possible to replace itwithabonegraft or need to have boneremoved, it’s often – oracombination ofthese. Even ifyou chemotherapy, radiotherapy orsurgery Your doctors might recommend Treatment grow inoraround your bones. Ewing sarcoma causesatumourto that make your bonesgrow, whereas bones. Osteosarcoma starts inthecells Ewing sarcoma. Bothusuallyaffect large in young people–Osteosarcoma and There are two maintypes ofbonecancer The basics BONE CANCER 20 BRAIN TUMOURS GERM CELL TUMOURS LEUKAEMIA Treatment The basics The basics The basics Surgery and chemotherapy are the Brain tumours are classified as either Germ cells are the cells in your body that The most common types of leukaemia in main treatments. If ovarian cancer is benign or malignant. The benign develop into organs. If germ cells begin young people are acute lymphoblastic diagnosed early, surgery might be all ones tend to grow more slowly and developing abnormally they can form leukaemia (ALL) and acute myeloid that’s needed – often to remove the are less likely to come back if they’ve germ cell tumours. Many of these are leukaemia (AML). Both involve abnormal affected ovary and the connected been completely removed. The benign, but some can become cancerous. white blood cells being released, which fallopian tube. More advanced cancer malignant ones tend to grow faster, Most testicular cancers, a few ovarian also affects the production of normal might require more extensive surgery, sometimes spread and may come cancers and a small number of brain red blood cells, white blood cells and possibly chemotherapy too. back after treatment. tumours are germ cell tumours. and platelets. SKIN CANCER Treatment Treatment Treatment The basics Surgery, chemotherapy and Surgery is usually used to remove germ Leukaemia treatment happens in stages. There are two different categories radiotherapy are the main treatments. cell cancers, and this might be all the The first stage kills leukaemia cells of skin cancer – melanoma and non- Surgery can remove all or part of treatment you need. If your doctors and the second stage stops leukaemia melanoma. Melanoma starts in skin cells a tumour if that’s possible without think there is a risk of your cancer coming back. Chemotherapy is usually called melanocytes and usually affects damaging your brain. Radiotherapy and coming back, or if your cancer can’t be the main treatment, and the whole moles. Non-melanoma cancers affect chemotherapy can be used if surgery completely removed, you might have process can last anything from four different skin cells. Both can be caused isn’t an option or to treat cells left chemotherapy and/or radiotherapy as months to three years. by exposure to the sun. behind after surgery. well as surgery to kill off the cancer cells. Some people need a bone marrow Treatment CERVICAL CANCER LYMPHOMAS transplant to treat leukaemia. That Melanoma treatment may only The basics The basics involves being given very high dose require the removal of a mole, but Cervical cancer is usually caused by Lymphomas are types of blood cancer chemotherapy or radiotherapy to kill chemotherapy, radiotherapy, surgery or the HPV virus. HPV is very common that start in the lymphatic system – a all of the leukaemia cells. Your bone biological therapy (a drug treatment) and often spreads during unprotected network of glands and tubes that runs marrow (the stuff inside your bones that might also be required. sex. A lot of types of the virus are through your body. There are two main makes blood cells) is affected by this Non-melanoma skin cancer is usually harmless, but some can damage cells in types: Hodgkin lymphoma and non- process, so it’s replaced with healthy treated with surgery, although the cervix and eventually cause cancer if Hodgkin lymphoma. Both are caused bone marrow taken from a donor. they’re not treated. by white blood cells behaving strangely photodynamic therapy (when cells are and causing tumours to form. OVARIAN CANCER killed by bright light), radiotherapy and Treatment The basics chemotherapy are also used. If cells are found that are abnormal Treatment Ovarian cancer starts in the ovaries. but not cancerous, various – often The treatment for Hodgkin lymphoma The most common type is epithelial painless – treatments are available. and non-Hodgkin lymphoma depends ovarian cancer, which affects the surface If cells are cancerous but found early, on your health and how advanced your layer of the ovary. Germ cell tumours can surgery and/or radiotherapy are cancer is, but both are often treated also form in the ovaries (see the section often used. In more advanced cases, with chemotherapy, sometimes in on Germ cell cancer for more on these). a combination or radiotherapy and combination with radiotherapy. Ovarian cancer can be hard to spot in the chemotherapy is common, sometimes early stages, because the symptoms are followed by surgery. often similar to period symptoms. 21 O 22 SOFT TISSUE SARCOMAS Treatment The basics The first part of treatment is surgery to Soft tissue describes parts of your remove the testicle. You can choose to TESTS, body – like fat, muscle, blood vessels have a fake, prosthetic testicle fitted, so and nerves – that connect, support everything looks like it did before. If your or surround other parts. Soft tissue cancer is more advanced, you might also TESTS AND sarcomas are cancers that affect these need chemotherapy to kill off cancer tissues and, because soft tissue is found cells and stop cancer returning. all over your body, they can grow pretty THYROID CANCER much anywhere. MORE TESTS The basics Treatment Several types of cancer start in the Surgery is the most common treatment. thyroid – a hormone-producing gland A surgeon removes the sarcoma and at the front of your neck, just above Tests can become a regular part some healthy surrounding tissue to your collarbones. The most common make sure all cancer cells are taken type is called papillary carcinoma, of your life when you have cancer, away. Radiotherapy and chemotherapy which tends to affect younger people, are used to treat sarcomas too, especially women. Thyroid cancer can using various techniques to check sometimes in combination with surgery. also be caused by having radiotherapy treatment to the neck as a child. how your body is responding TESTICULAR CANCER The basics Treatment to treatment. Testicular cancer is unusual because, unlike The first part of treatment is usually most cancers, it tends to affect younger surgery, with all or part of your thyroid Some tests are quick and routine, others AUDIOGRAM men. There are various types, but the most removed. Radiotherapy – and in can be fairly uncomfortable, and how What is it? common one affects germ cells, which particular a radioactive capsule or liquid much you want to find out about them is Some chemotherapy drugs can affect the body uses to help create sperm. The called radioiodine – is also used to kill up to you. Knowing what to expect can your hearing. If these drugs are chances of making a full recovery from cancerous cells. And chemotherapy can ease any worries you might have. But if recommended for you, you’ll have an testicular cancer are good, but finding it be used to ease advanced cancers or if you prefer not to know too much before audiogram before and during treatment earlier makes it easier to treat. cancer returns after treatment. having tests, now’s the time to skip to to check for any changes to your the next section. hearing. (An audiogram is actually the graph used to record the test results.) You can learn about some of the most FOR MORE DETAILS common tests over the next few pages, What’s involved? but if you have questions or want to Doctors use various hearing tests ON YOUR CANCER find out more, just let your doctors or to measure how your ears and nerves nurses know. respond to sounds at different volumes and frequencies. All of the tests are painless.

23 24 BIOPSY What’s involved? BONE MARROW BIOPSY sample of bone taken. That’s done using What is it? Blood can be taken using a needle, central What is it? a different needle in the same part of During a biopsy, a small tissue sample line, port/port-a-cath or PICC line. Lines Bone marrow is the soft, spongy tissue your skin. A bandage is then applied to is taken from your body so the cells can and ports are tubes used during treatment that’s found inside some of your larger stop any bleeding. be studied under a microscope for signs to avoid having repeated injections. You bones. During a bone marrow biopsy of cancer. can read more about them on page 35. (which you might also hear called a It usually takes a few days for the bone marrow aspirate), a sample of your results of a bone marrow biopsy to What’s involved? There are lots of different types of blood bone marrow is taken and examined come back. In those first few days, your You’ll be given pain relief or an tests. Some you might hear your doctors under a microscope. back might feel sore. Painkillers can help anaesthetic before a biopsy to make talk about are: with this, so it’s important to let your sure you feel comfortable. A tissue • Absolute neutrophil count (ANC) You might have a few bone marrow doctors or nurses know if you are feeling sample is then taken for testing. – Sometimes just called ‘neutrophils’. biopsies during your cancer treatment. a bit tender. Used to see how well your body can They help doctors to monitor the There are various ways of doing this. BONE SCAN fight infection production of blood cells in your body, Depending on which cells are affected, What is it? • Blood cultures – Used to find out if which is one way of tracking how your doctors might use a hollow needle, or Bone scans can show up unusual things there is an infection in your blood and treatment is going. Sometimes very make a small hole in the skin, or carefully in your bones much earlier than X-rays, which antibiotics you might need specialised tests are also performed on scrape cells away. It’s also possible so are sometimes used to test for • Full blood count (FBC) – Used the bone marrow – things like looking to have a biopsy during surgery. Your bone tumours or to find out if tumours to check the levels of red cells, white at chromosomes, identifying types of doctors and nurses will explain exactly elsewhere in your body have spread to cells and platelets in your blood, all of leukaemia or measuring very small what to expect. your bones. which can be affected by cancer and amounts of leukaemia during treatment. cancer treatments The cells are then examined by a What’s involved? What’s involved? • Haematocrit (Hct) – Tested to pathologist (an expert in identifying You’ll be given pain relief or an Before a bone scan, you’re given an check the volume of red blood cells in changes in body tissues) to confirm or anaesthetic before a bone marrow injection of a small, harmless amount your blood rule out a cancer diagnosis. biopsy and then asked to lie on your side of radioactive material. Your bones • Haemoglobin (Hgb or Hb) – absorb this fluid, which shows up on a BLOOD TEST on an examining bed. Tested to check you’re not anaemic or scan in areas where anything unusual is What is it? at risk of anaemia If you’re given sedative medicine to happening. This can include areas where Blood tests are used to monitor the • Platelets – Tested because help you relax, you’ll quickly fall asleep there is a tumour or an infection. amount of red blood cells, white blood chemotherapy can cause platelet levels and won’t feel the biopsy. You might cells and platelets in your blood, as these to drop (platelets are the cells that feel a bit washed out for a few hours After you’re given the injection you can all be affected by cancer and cancer stop bleeding) afterwards as the medicine wears off. usually need to wait a couple of hours to treatment. Blood tests can also be • Red blood cells – Tested because have the scan, so it’s a good idea to take used to measure how your liver various cancers can cause red blood If you’re not given a sedative, you’ll be a book or iPad to pass the time. You’ll and kidneys are working and cell levels to drop (red cells carry given a local anaesthetic via a needle. be asked to drink plenty of fluids to help to show the levels of oxygen through your body) The anaesthetic might sting at first but flush the injection through your body. nutrients in your blood. • White blood cell differential – then the area will go numb. The scan usually lasts around an hour. Used to show the levels of different A biopsy needle is inserted into your You need to lie still while a camera moves types of white blood cells in your blood pelvic bone and a small amount of bone around you. You might need to change • White blood cells – Tested because marrow is pulled up into a syringe. Once position a few times, and you can usually various cancers cause the production that’s done, you might also have a small have someone with you during the scan. of abnormal white blood cells (white cells fight infection) 25 A 26 ELECTROCARDIOGRAM (ECG) Your doctor or nurse will then put a What is it? hollow needle into your lower back An ECG is used to check that your heart and take a few drops of fluid from is working well if you’re taking certain the space around your spinal cord. AND SOME chemo drugs that can weaken the heart muscle. After the test, the fluid is examined under a microscope for signs of cancer MORE What’s involved? or infection. An ECG is painless and usually takes about five minutes. During the test, Your doctor or nurse might ask you to lie electrodes (small flat metal discs) flat for a few hours after the test to stop are attached to your arms, legs and you getting a headache. If you do get a chest. Wires from these electrodes are headache, painkillers should help. connected to an ECG machine that MAGNETIC RESONANCE records the electrical signals produced IMAGING (MRI) SCAN TESTS every time your heart beats. What is it? LUMBAR PUNCTURE An MRI scan is used to create cross- What is it? sectional pictures of your body and can show some types of tumours. After it’s done, you need to drink a lot normally last between five and ten A lumbar puncture is a test to check of water to flush out the radioactive minutes, but you do need to lie very still the fluid that circulates around your What’s involved? liquid. It’s usually a few days until the to get a good scan. You might be given a brain and spinal cord. This is usually An MRI takes place in a large, tube- results are ready. contrast solution (a liquid that’s given to done to check for cancer cells but shaped machine. You lie on a flat bed you either as a drink or via an injection) can also be used to look for signs COMPUTERISED TOMOGRAPHY inside the tube during the scan. to help the different parts of your body of infection or to measure the levels (CT OR CAT) SCAN show up more clearly on the scan. of certain chemicals in the fluid. Depending on which part of your body What is it? Chemotherapy is also sometimes is being examined, you might be moved A CT or CAT scan (they’re different The technician running the CT scan given to you through a lumbar into the scanner feet-first or head-first. names for the same thing) is used to machine will be in a separate room, but puncture needle – this is called A radiographer (an expert in taking create detailed cross-sectional pictures you can talk to them using an intercom. intrathecal chemotherapy. X-rays and other scans) then controls of your body from various angles. the scanner from a separate room. You It can show exactly where a tumour If you want someone with you in the What’s involved? can talk to them throughout the scan, is and how big it is. room, they’ll need to wear a lead vest to You’ll usually be given a local and they can see you on a TV screen. protect them from the X-rays created by anaesthetic before a lumbar puncture. What’s involved? the CT machine. This numbs the area before any fluid is An MRI scan usually takes 30-90 During a CT scan, you usually lie on taken. Alternatively, sometimes a short minutes. You need to lie completely your back on a flat bed. A large tube, The scan results will be used to build general anaesthetic is given instead. still. It can be noisy – you might hear which produces X-rays, is then rotated up a detailed picture that is then humming or banging sounds, and you’ll around your body. You’re usually moved examined by a radiologist (a specialist You’ll probably be asked to lie on your be given headphones or earplugs – but continually through this rotating beam. in interpreting scans). It can take a few side with your legs curled up slightly. it’s painless. The good thing about CT scans is days (or longer) to get your results. that they’re quick and painless. They

27 28 You might be given a contrast solution during your MRI. This is a liquid that helps the radiologist to see the different TREATMENTS parts of your body more clearly. Contrast solutions can be drunk or given as an injection. DECIPHERED POSITRON EMISSION TOMOGRAPHY (PET) SCAN What is it? A PET scan produces detailed 3D Cancer is treated in lots of different images of the inside of your body. It can show if lumps are cancerous, X-RAYS ways – and getting your head whether cancer has spread and if What is it? around what could happen can feel cancer treatment is working. If you’ve ever broken a bone, you’ll probably have had an X-ray. X-rays are What’s involved? overwhelming. This section should a type of high-energy radiation, and You’ll usually be asked not to eat passing them through your body means help you understand the main options. anything between four and six hours doctors can see tumours, bones and before a PET scan, and you might also changes to organs and tissues. be asked to avoid caffeine for 24 hours When it comes to cancer treatment, But it also means that chemo attacks beforehand. What’s involved? there’s no one-size-fits-all solution. other, healthy, fast-dividing cells, like Depending on which part of you is being Treatments are changing and improving hair cells – which is why it can cause Before the scan starts, you’ll be given X-rayed, you might need to strip down all the time, and your doctors and side effects like hair loss. (Turn to page a radioactive substance called a tracer, to your underwear and put on a gown. specialists will work together to decide 46 to read more about the side effects either via an injection or by breathing it You’ll need to take off any jewellery in what’s best for you. You might have one of chemo and other treatments.) in as a gas. The tracer gives off radiation the area that’s being X-rayed too. type of treatment or a combination of that shows up on the PET scanner, and different types. When is it used? takes 30-90 minutes to travel around You can eat and drink what you like Chemo is sometimes the only treatment your body. beforehand (unless you’re having a But whatever your treatment involves, you’re given, but it’s also used alongside barium X-ray, in which case you’ll need it’s really important that you understand other treatments, like radiotherapy. Once that’s happened, you’ll be asked to drink some barium – a white liquid what’s planned and why – so never be It can be used before surgery to kill to lie on a flat bed, which will then be that shows up on X-rays and can help afraid to ask. cancer cells or after surgery to prevent moved into the circular scanner. You’ll doctors look at your stomach, bowel and cancer returning. And it can be used as CHEMOTHERAPY need to stay still during the test, which other parts of your body). a medicine to help you feel better if your ‘Chemo’ uses drugs, called usually takes 30-60 minutes. cancer is very advanced. The radiographer who controls the X-ray cytotoxics, to kill off the cells that After the test, you’ll need to drink plenty machine will then put you in the right cause cancer of fluids to flush the tracer out of your position. It takes a fraction of a second Chemotherapy works by attacking and body. It can take a few days for your to take an X-ray, and then you can get destroying fast-dividing cells. That’s doctors to see the test results. dressed and head home. Your results will good because it can kill cancer cells – be sent to your doctors to discuss which do divide fast (that’s how cancer with you. spreads in your body).

29 30 What’s involved? It can be used before surgery to shrink People often have five treatments a How long does it take? Chemotherapy involves drug treatment. a tumour so it’s easier to remove, or week – one a day, Monday to Friday – The length of your operation depends on The drugs are often given in cycles – so after surgery to kill off any cancer cells with a chance to rest over the weekend the type of cancer you have and where you have drug treatment for a set period that have survived. And it can be used and to let healthy cells recover. it is. Sometimes if a surgeon finds your and then stop the treatment for a set to relieve cancer symptoms in more You might need treatment over the cancer has spread more than expected, period before this process is repeated. advanced cancers. weekend too, though. In total, external your operation might take longer than The time in between drug treatments radiotherapy usually lasts between one planned. But your doctors will let you helps your body to recover from the What’s involved? and seven weeks. know how long it will last – and how effects of the chemo. • External treatment long it might take you to recover, too. During your appointments, you’ll need If you have internal treatment, your IMMUNOTHERAPY You might be given one drug or a to stay still for a few minutes while doctors will let you know how long a Immunotherapy is a newer form combination, depending on the type high-energy radiation is targeted at radioactive implant will be left in for, of treatment of cancer you have. And you might be your cancer and at a small area of or how often you need to visit hospital. given the drugs via an injection, via an surrounding healthy cells – in case the You might need to stay in hospital after It helps your own immune system kill IV infusion (see page 35 for more about cancer has spread. The machine that’s internal treatment. the cancer cells. You might be offered infusions) or as tablets or medicine. immunotherapy in combination with used doesn’t touch you, you won’t feel SURGERY any pain and you usually won’t need to other treatments. How long does it take? Surgery is used to treat stay in hospital overnight. The length of your chemo treatment cancerous tumours What’s involved? and the drugs that you take depend on • Internal treatment If your cancer hasn’t spread, surgery There are different ways of taking these the type of cancer you have. You might Internal radiotherapy involves might be the only treatment you need. drugs, depending on your cancer. It have daily, weekly or monthly treatment, radioactive liquids and implants. It’s used to cut out a tumour and a small could be by injection, through a drip, as and treatment can last for between a amount of healthy surrounding tissue a tablet or even as a cream on the skin. few months and several years. You might be given a liquid to drink, – to make sure as many cancer cells as a tablet to swallow or an injection. possible are taken away. Sometimes How long does it take? RADIOTHERAPY Afterwards, you may need to stay in chemo and radiotherapy are used after Treatment could be every day, week Radiotherapy uses radiation a hospital room by yourself for a few surgery to kill any remaining cancer cells. or month – again, it depends on your to destroy cancer cells days while radiation levels drop. cancer. You might have treatment in Radiotherapy can be given to you What’s involved? cycles – with breaks in the treatment externally or internally. In external Implants are things like wires and tubes, The type of surgery you have depends so your body can rest, respond to the radiotherapy, machines are used to placed in your body to release radiation on the type of cancer you have. Your treatment and build up healthy cells. target cancerous cells with special near cancer cells, then left in your body surgeon and care team will talk you BONE MARROW/STEM CELL for between a few minutes and a few through everything beforehand, and X-rays. Some people have protons TRANSPLANTS days – or sometimes for good. Don’t you’ll have a general anaesthetic so you instead of X-rays. Protons and X-rays Transplants are used to help your worry: they sound much scarier written won’t be awake during the operation. are both just as good at killing cancer body recover after high-dose down than they actually are. Some cancers can be treated using cells. In internal radiotherapy, radioactive chemotherapy, or to replace your keyhole surgery, when a surgeon inserts liquids and implants are used inside your bone marrow cells with healthy How long does it take? a camera into your body and removes body to attack cancerous cells. bone marrow from another person If you have external radiotherapy, you’ll the tumour looking at footage on a When is it used? be given it in a number of individual TV screen. Higher doses of chemo are more likely Radiotherapy can be used on its own treatments. These are called fractions. to kill cancer cells, but will also damage or in combination with chemotherapy. more of your bone marrow (the stuff inside your bones that makes blood

31 32 cells) and stem cells (the cells, made by STEROIDS your bone marrow, that develop into You might be offered steroids HANDY ? blood cells). So you’re given a transplant (usually ‘corticosteroids’) of bone marrow or stem cells to replace alongside other treatment. QUESTIONS what’s destroyed by chemo. Steroids might be used to treat the cancer itself. But they are sometimes What’s involved? used to reduce symptoms or side effects High-dose chemo usually takes five or Never be afraid to ask questions! When you’re talking about while you have another kind of treatment. six days – sometimes less, sometimes treatments with your medical team, you might like to ask: ? more. You might also have radiotherapy They might be tablets, a liquid you drink, to kill any remaining cancer cells. Your or an injection. You usually take them for • Exactly which type of treatment is being recommended bone marrow or stem cell transplant a few days or weeks. happens after that. COMPLEMENTARY THERAPIES Types of transplant Complementary therapies are

If you have an autologous transplant, that used alongside the conventional • How long your treatment will last means the cells are taken from you, frozen treatments described above. and given back to you after high-dose Examples of complementary therapies treatment. Autologous transplants usually include aromatherapy, art therapy, involve stem cells taken from blood. acupuncture, herbal medicine, massage

therapy, meditation, visualisation • What the side effects might be, and how you can reduce them If you have an allogeneic transplant, that and yoga. means the cells are taken from someone else and given to you. They’re not intended to cure cancer, but that doesn’t mean they won’t help you feel The type of transplant you have depends better about yourself. It’s really important on lots of different things, like the type to talk to your doctors and nurses about • What the treatment is meant to achieve of cancer you have and any treatments any complementary therapies you’re you’ve already had. Your doctors and thinking of using, though, because some nurses will talk everything through with might not mix well with certain medicines, you beforehand – and if you have any including chemotherapy drugs. questions, just let them know. • How effective your treatment is likely to be It’s also important to know the difference Staying in hospital between complementary therapies Because your system will be weakened and alternative therapies. Alternative by the transplant, you’ll stay in a single therapies are used instead of conventional room in hospital for a few weeks – where treatments like chemotherapy and • Whether any other treatments might work there’s less chance of picking up any radiotherapy – and many are unproven. bugs. You can’t have many visitors and it can get pretty boring, but decorating If you are thinking about using alternative your room with photos and bringing therapies, you should talk to your care plenty of DVDs can help. team. Your doctors and nurses will know about them, and won’t get angry or upset if you ask to talk about them.

33 34 HICKMAN LINES PORT/PORT-A-CATH A Hickman line involves a small tube Also known as an implantable central GETTING being inserted into a big vein near your line, a Port/Port-a-cath is similar to a heart and then run under your skin so it Hickman line. Instead of having lumens comes out near your breastbone. (Don’t outside your body, though, the end of worry – you’ll have an anaesthetic while the line is completely under your skin. HOOKED UP it’s fitted.) It’s another way for your medical team to get drugs and fluids into your system The other end of the tube splits into without using lots of injections There’s a good chance that during smaller tubes, which hang outside your in different places. your cancer treatment you’ll body. These are used to give you drugs need various drugs and liquids and fluids. The smaller tubes are called How does it work? to be delivered straight into your lumens, and are always covered with a You’ll be given either a general or, more bloodstream. You might need sterile dressing. commonly, a local anaesthetic. A tube is antibiotics or chemo drugs or blood then inserted into a vein near your heart It might all sound a bit scary, but products (transfusions). And you’ll and connected to a small box, which is it’s actually a really clever piece of probably need to have lots of blood implanted under your skin (you’ll be able equipment – and definitely a better tests to check how you’re doing, too. to feel a small bump where the box is). option than lots of injections. Your doctors and nurses could do all A special needle with a tube attached Taking care of a Hickman line of these things by giving you lots of to it (called a Huber needle) is then Your Hickman line is designed to stay different injections. But usually you’ll used to give you drugs and fluids in place, so you don’t need to worry have an IV line inserted instead. through the box, and to take blood THE INS & about it coming out while you move samples. The needle can be removed IV is short for intravenous, which means around or sleep. But you do need to be after your treatment. ‘into the veins’. And the good thing OUTS OF careful not to get it wet. Your nurses will about having a central IV line is that it’s let you know how to keep it dry when Initially you can numb the skin above connected directly to one of your major you bath or shower, and they might the box using anaesthetic cream before veins, so you avoid multiple needles recommend you don’t go swimming. a Huber needle is inserted, but the skin being used. Instead, all drugs and fluids They’ll also show you how to change soon gets very tough, so you won’t are given to you from this one line. the sterile dressing. feel much. Blood can be taken using the line too. Having a Hickman line usually becomes If you have a Port/Port-a-cath fitted, you There are different ways of doing second nature pretty quickly. And if can still swim and shower and you don’t this. You might be given a central line you do find yourself getting annoyed need to worry about sterile dressings. It (Hickman lines, Port/Port-a-caths and with it, try and think of all the needles just needs to be flushed out occasionally PICC lines are all types of central line). you’re avoiding. to avoid blood clots and infections. Or you might be fitted with a flexible tube called a cannula. IV

35 36 PICC LINE Getting used to your IV pump A PICC line (it stands for Peripherally If you’re given drugs and fluids through Inserted Central Catheter) is another an IV line, that line will be connected GIVE IT TO type of central line. It’s a thin tube, to an IV pump, which keeps everything about 60cm long, that’s inserted into flowing into your veins at the right rate. your upper arm and passed into a vein The drugs and fluids are usually hung on near your heart. You’re given a local an IV pole that’s connected to the pump. ME STRAIGHT: anaesthetic before it’s fitted, so you Some pumps are designed so you can don’t feel anything. carry them around in a small bag. DOES IT HURT? A PICC line can be left in for several IV poles are on wheels so you can move months and is often used for short-term around during your treatment. They treatment or until you have surgery to beep quite a lot and can be annoying at have a more permanent central line or first, but don’t worry – you’ll soon get It’s probably one of the big questions Port-a-cath fitted. Drugs and fluids are used to it. given to you through the PICC line in on your mind. And the short answer, your arm. If you don’t have an IV line… Even if you don’t have a central line or unfortunately, is that some of your CANNULA a cannula, you may still need to have Depending on your treatment, you blood tests taken through a needle in treatments – or the side effects of might not need a permanent central your arm. line. But you probably will need some those treatments – might hurt. IV procedures, and these will usually be It’s not usually too painful, done using a cannula. but it’s not exactly fun either. Don’t be afraid to That doesn’t mean you’re going to be CAUSES OF PAIN A cannula is a small tube that’s put into let your doctors and nurses in pain the whole time or that every Unfortunately, there are various times your hand or arm. It can only stay in for know if you’re not a fan of treatment you have will hurt. But it does when you might feel pain. Tests including a few days, but may still be used as part needles. Using an analgesic mean that you probably will experience biopsies, lumbar punctures and bone of your cancer treatment. cream can help to numb the some pain during your treatment. marrow tests can be painful. You’ll have area, and reminding your care team an anaesthetic or painkillers before any to switch between your arms if you’re It’s important that you tell your doctors of these. having regular injections can help too. and nurses if you’re hurting. No one will think any less of you, and painkillers can Treatments including chemotherapy really help you to keep doing the things and surgery can be painful. Chemo can you enjoy. Everyone experiences pain sometimes cause side effects like mouth differently, so try not to compare what sores, constipation and joint pain, and the you’re feeling with other people. And place where you’ve had surgery can be don’t be tempted to tough it out – it only sore after the anaesthetic has worn off. makes things harder. Tumours can be painful if they press on your bones, nerves, spinal cord or organs – although treatment should help to reduce this pain. 37 Q 38 WHO’S DEALING WITH TREATMENT THE BOSS? Cancer can leave you feeling totally DEALING WITH PAIN For starters, you could try: out of control – but this treatment is There are lots of different ways to relieve • Listening to music any pain you might have. The most • Taking someone with you who’s good important thing is to mention it to your all about you, so never be afraid to at distracting you doctors and nurses, who will talk you make yourself heard. through potential options. • Trying meditation or relaxation techniques You might have read about people • Speaking to a psychologist Who’s the boss? You are. You might not see you but they can’t make it during becoming addicted to painkillers. In or counsellor always feel like it, especially if you find normal visiting hours. Maybe you want reality, that’s very, very rarely an issue. • Using analgesic cream to numb your yourself in a whirlwind of doctors and to leave hospital for a couple of days to Pain management is an important part skin if you’re worried about having nurses all talking about your treatment go on a school or college trip. of your treatment, so you’re given the an injection using jargon you just can’t get your drugs that are right for you, and when Whatever you’re wondering, if you don’t • Getting hypnotherapy if your worries head around. the pain stops, you stop taking them. ask you don’t get – so ask! Your care become a big problem End of story. But this is your treatment. It’s you that team will understand and be happy to DEALING WITH TREATMENT Everyone involved in your treatment wants everyone is talking about. So you’re chat through what’s possible. to make things as easy as possible for numero uno. There might be parts of your treatment It can be hard to speak up, but it’s you. So if you need support, just ask for it. that make you feel stressed. Maybe you If you have questions or want to know usually one of those things that seems We’ve said it before and we’ll say it again: don’t like needles. Maybe you don’t like about other options or just want people much worse in your head than it actually you never have to face cancer alone. hospitals. Whatever it is, feeling anxious to slow down and talk you through is. What matters is that the people is nothing to be ashamed of. In fact it’s Top tip: In pain? Don’t keep it to what’s happening in normal language, around you know what’s important very common. yourself. Your doctors and nurses say so. Writing down questions to you. can help – but only if you let beforehand can help. But instead of lying awake at night And remember, you’re the boss – and them know. worrying, it can really help to talk about Maybe you want to delay your next people listen to their bosses! it. Your care team and support team round of chemo until after an exam. Parents will be able to help you with techniques Maybe your friends want to come and to manage anxiety and approach treatments differently. They can also help you to think about what helps you to relax and how you can incorporate these things into your treatment.

39 40 CLINICAL TRIALS

Doctors, scientists and researchers are constantly working to discover new cancer treatments and to improve the ones that already exist.

Of course, you might be happy for your If you find yourself in this situation, try They do this by running clinical mum, dad or carer to make all of the to let them know how you feel (you trials and you might be given the decisions about your treatment. That’s can read more about this on page 104). fine – it’s 100% your call. If you are over 16, it’s usually possible option to take part in one. for you to make decisions about your But you might also find that you want to treatment without your parents’ input. have your say but struggle to get your parents to listen to you. They’re probably But it’s usually better for everyone if worried and want to do what seems you all discuss the options together. So WHAT ARE CLINICAL TRIALS? You might be given the option to take best, but it can be pretty annoying gently remind your parents that you’re Clinical trials are a type of research part in a clinical trial as part of your at times. an adult and that you’d really like to used to find out if new treatments and treatment. If you are given this option, have a say in your treatment too. techniques (or a new combination of ask as many questions as you need to, standard treatments) are safer and more and weigh up the pros and cons before effective than the ones that already exist you decide if you want to be involved. YOU HAVE THE RIGHT TO BE – by testing them on people. They are a IS IT SAFE? vital way of continuing to develop INVOLVED IN DECISIONS ABOUT better treatments. Don’t worry, clinical trials happen right YOUR CARE AND TREATMENT – SO at the end of a long, tightly controlled Clinical trials might look at: process. You won’t be the guinea pig DON’T BE AFRAID TO SPEAK UP. • New drugs for some wild new treatment dreamed up yesterday and served from a witch’s • New types of radiation therapy cauldron. And doctors and researchers • New surgical methods will only suggest you take part in a • New ways to combine treatments clinical trial if they think it’s right for you. • New treatments like gene therapy

41 42 All clinical trials are designed to be as MYTHBUSTER: safe as possible, and young people tend TAKE TIME TO to be involved in Phase 3 trials, which CLINICAL TRIALS compare new and existing treatments to see which ones work best. WEIGH MYTH #1 MYTH #4 Many of the standard treatments for You’ll be treated like a guinea pig. Once you’ve said yes, you’re stuck. cancer started out in clinical trials, and UP THE many people now have a better quality Definitely not. You get a very high level This one’s not true either. If you change of life thanks to knowledge gained of care. No exceptions. your mind at any point – including during treatment – you can leave the during clinical trials. MYTH #2 trial. Not a problem at all. PROS You’ll be given sugar pills. IS IT WORTH IT? It’s important to remember that the Dummy treatments like sugar pills (you MYTH #5 treatment you are given during a clinical CONS might hear them called placebos) are You’ll be kept in the dark. trial may or may not be better than very rarely used in cancer trials. You’re Noooo. The research team has a duty to existing treatments. That’s what the trial either given the best available treatment make sure you understand what’s going is designed to find out. WHAT’S INVOLVED? or a new treatment that’s being on. So ask as many questions as you Phase 3 trials usually involve hundreds tested. You’ll only be offered placebo can think of. You’ll be given the contact You’ll be closely monitored and probably of people in lots of different places. A treatment if that’s the best way to see details for someone you can talk to at get even more attention than normal, computer randomly splits everyone into how effective a new treatment is. And if any time. which means changes to your health two groups, with half – the trial group – placebo treatments are involved in your IS A CLINICAL TRIAL RIGHT usually get picked up more quickly. And given the new treatment and half – the trial, you’ll be told about it before being FOR YOU? it’s often the case that people on clinical control group – given the best treatment asked if you want to take part. trials see better results than similar that’s already available. The results are Only you can decide if you want to get patients not involved in a trial. compared to see which treatment is MYTH #3 involved in a clinical trial. Our advice? most effective. Trials only take place Ask questions. Lots of questions. Write And, by testing new treatments, you’re at big hospitals. them down before appointments so you also helping to improve the care given to Whichever group you’re in, being Nope. Many trials now happen at smaller don’t forget anything. Find out exactly other young people in the future. involved in a trial means you might need hospitals, so you might not need to what’s involved. Talk it through with to have more check-ups than normal, travel a long way to take part in one. people close to you. And don’t rush into and these might last slightly longer. You However, some trials do only take place a decision. might have more blood tests, scans and in big centres – particularly if they other tests too. What you decide is 100% up to you. IT’S COMPLETELY involve rare cancers or use new drugs. It’s not a problem at all if you choose Taking part in one of those does mean If your doctors think the trial isn’t not to get involved. UP TO YOU hitting the road. working for you, they’ll take you off WHETHER YOU it. And, if you’re not happy, you can Alternatively, if you’re interested in WANT TO GET withdraw at any point. Your doctors will getting involved in a trial but it’s not understand, it won’t affect the rest of been mentioned, talk to your doctors. INVOLVED IN A your treatment and you won’t be asked They might know about a trial that CLINICAL TRIAL any awkward questions. would be suitable for you.

43 44 SIDE EFFECTS – THE TRUTH

OK, so you’ve read about the treatments you might have. That probably means you’re wondering what they could actually do to you. Here’s our no-nonsense guide to possible side effects.

There’s no point denying it. Your body ask your doctors and nurses if you’ve will react to cancer treatments. It’s got any questions. important to remember that everyone SHORT-TERM SIDE EFFECTS reacts differently, but you might The bad news? Some of these can experience some pretty unpleasant be pretty uncomfortable. The good side effects. Or, to put it another way, news? They usually go away once your sometimes you may need to go through treatment is done. some tough times to get better. FEELING SICK The nature of any side effects depends Some chemo drugs can leave you feeling on a lot of things, including the type QUESTIONS pretty rough. Nausea usually hits a few of cancer you have and the type of hours after treatment – and can last for treatment you’re having. They can affect quite a while. you in the shorter or longer term. And because everyone is different, it’s not Let your doctors and nurses know if DON’T RUSH INTO MAKING a great idea to compare yourself to you do feel sick. There are drugs that A DECISION! other people. can help, and if you take them quickly enough they might be able to prevent It can be helpful, though, to have an idea you from puking. of what might happen. So take a look through this section and remember to

45 46 • Take it easy after meals. Feet up and MOUTH PROBLEMS If you’re finding it really difficult to TV on Chemo can be a real pain in the mouth. swallow, your doctors might recommend • Eat with other people to take your You might get mouth ulcers or have a using a nasogastric tube. That’s a thin mind off your plate sore mouth and/or throat during and tube that’s put into your nose, down after chemo. Food sometimes tastes your throat and into your stomach. • Get plenty of fresh air bad too. Having it put in can be a bit painful, • If you start to feel dodgy, take but it only takes a few minutes – and it deeeeeeeep breaths. It can really help Sucking on red ice pops relieves pain means food can be given to you through (but only red ones – citric acid in yellow the tube in liquid form, so you don’t FEELING TIRED and orange ones might make your need to swallow it. Some cancer treatments – especially mouth worse). So does avoiding crunchy chemo – can leave you feeling totally food and very hot or cold drinks. And wiped out. Even after your treatment is you have the perfect excuse to get finished, you might feel like you’re stuck plenty of ice cream down you. in first gear. It can be frustrating, but

try and be patient. Give yourself time It’s also important to take care of your

to recover. Eat well. Sleep often. Go to teeth and gums – so brush very carefully S bed around the same time each night. using toothpaste and a soft brush. As for general advice, these tips should Don’t overdo it. And let other people Sometimes using a children’s toothbrush come in handy: help you out. can help, and some mouthwashes can • Avoid your favourite foods. At the risk come in handy if you find it painful of sharing too much information, they Being active can really help to combat to brush or if your gums bleed. Check won’t be your favourites for long if tiredness: sometimes just going out for with your care team before using you eat them when you’re not feeling a walk can make you feel more awake. mouthwash though. great. Plus they’ll taste even better And (while we know you might struggle once you’re ready to eat them again to believe this if you’re feeling exhausted • Keep a sick bag handy right now), doing more often leaves you feeling able to do more. Honestly. • Eat small, frequent meals and snacks (big meals can be hard to tackle, but If you are feeling very tired, you might hunger can make you feel worse) find your mood is affected. It’s pretty • Chop up food into small pieces common to feel low if you’ve not got • Eat your main meal whenever you feel the energy to see friends or do what best (even if that means a leftover you usually enjoy doing. If that sounds roast dinner at 6am) familiar, you don’t need to struggle in silence. Start by turning to page 96 for • Avoid foods that smell strong – and some ideas for dealing with steer clear of people eating them too low moods. • Choose drinks that will give you a boost – milk, juice etc...

47 48 HAIR LOSS Dealing with hair loss can be tough, • If you do lose your hair, try and learn • Eat food that doesn’t smell strong Even if you’re expecting it, this one can because every time you look in a mirror to love your bald self. Show the • Eat with other people to take your be a shock. you’re reminded of it. But these ideas world that bald is beautiful. If you’re mind off food might help: comfortable with it, other people will • Avoid your favourite foods after You might find you lose your hair if be too you have chemotherapy. Radiotherapy • If you’ve ever wondered about trying treatment – you can really put yourself • Contact support groups who can put can cause hair loss where you have a new look, now’s the time. If your off them you in touch with other young people treatment too. In both cases, it happens hair could fall out, go wild with the • Wait for a few hours when you who’ve lost their hair. It’s a good way because the treatment kills fast-dividing clippers or the hair dye before it does. can’t face food. If you don’t feel up to vent, and you might pick up some cells, and cancer cells and hair cells both Think bright pink. Think a zigzag to eating, just take a few hours then good fashion ideas too fit into that category. mohican. Think braids. Think a bright try again • Ask your nurse or youth support pink zigzag mohican with braids. You • Keep a sick bag nearby, just in case (It doesn’t happen to everyone though, could get your friends over to do the coordinator about the great projects so don’t worry if your hair doesn’t fall shaving and dyeing out there that can provide wigs for If you’re losing weight, your medical out – it doesn’t mean your treatment you. The NHS and various charities can • If you’ve got long hair, experiment team will suggest ideas that could help isn’t working.) arrange this with shorter hairstyles now. It can you put on a few pounds. You could try: make hair loss seem less of a leap. • Try to remember that hair loss is only It’s not only the hair on your head • Eating foods that have a lot of If you know how to use photoshop, temporary – and once you’re done that can be affected. Your eyebrows, calories (surprise, surprise…). Ice cream, airbrushing your hair out of a photo with treatment, you can decide what eyelashes, underarm hair and pubes cheese, milkshakes, yoghurts and all of can do the same thing style you fancy from now on might fall out too, but it all usually the other things you’re usually told not starts growing back a few weeks after • Treat yourself to scarves, hats or EATING DURING TREATMENT to eat are ideal your treatment finishes. It sometimes whatever suits you best Some treatments can affect your • Drinking energy drinks looks different though, and can be appetite, make you feel sick or cause • Concentrating on getting plenty of thinner, thicker, curlier, straighter or a you to put on or lose weight. different colour. protein-rich food – like beans, eggs, fish, meat and nuts As we’ve already said, if you do find yourself feeling sick, let your doctors and nurses know. They might be able to give you drugs that will help. And if you have DON’T WORRY problems with your appetite, weight gain, weight loss or anything else to do with eating, you can always ask your care team to refer you to a dietician.

If you’re losing weight… These ideas might be useful if you don’t fancy food:

• Eat small, frequent meals, rather than a few big meals a day • Chop up food small to make it easier to stomach

49 50 If you’re gaining weight… • Wearing clothes you feel comfortable Some treatments – particularly steroids in. If you have put on weight, buying – can cause you to put on weight. If you some new clothes can make you feel do put on a few pounds during cancer better about yourself (and make you treatment, though, it’s really important smile once you lose the weight again) that you don’t avoid eating to try and • Talking about how you feel. Let people stop putting any more weight on. know if you’re worried about your Weight gain during treatment is usually weight – keeping your feelings to temporary, and right now your body yourself usually makes them worse needs energy to help fight your cancer. CHEMO BRAIN You might find you put on weight in It’s not a medical term, but some people particular places. Some people get say during chemo they feel spaced out, chubby cheeks, for instance. This can dopey and sleepy, and that they struggle be really frustrating, but dieting won’t to concentrate and remember things. change this because it’s a side effect It’s often known as chemo brain, and INFECTION If you think you have any of these that continues during treatment. it’s usually caused by medicines that This is often caused by your immune symptoms or suddenly feel rubbish you’re taking. system being low, sometimes called during chemo treatment (even if you If you do put on weight, it’s OK to feel a ‘neutropenia’ or ‘being neutropenic’. It’s don’t have a temperature), you must bit self-conscious. But focus on getting If you feel like this, keep yourself safe. one of the most serious side effects of seek medical help as soon as possible. through the treatment. Once it’s done No driving or taking up weightlifting. It chemotherapy. Symptoms of When you start your treatment, your you can think about eating well and can help to keep a journal of when you an infection can include: doctors and nurses will let you know exercising to lose any weight you’re take your medicines, too, so you get • A temperature above 38°C which hospital to go to and who worried about. a better idea of which ones might be to contact. • Your skin feeling hot to touch causing you problems. And using a diary Try to focus on: OTHER SHORT-TERM EFFECTS or putting reminders in your phone can • Feeling cold or shivery • Eating healthily, which will help you be helpful if your memory is temporarily • Achy muscles • Diarrhoea to avoid real long-term weight gain a bit on the sleepy side. • Tiredness • Irritated skin (rather than weight gain caused by • Spots your treatment) The symptoms tend to improve once you • Stinging or pain when you go to the loo • Achy, flu-like symptoms • Filling up on plenty of fruit and veg stop taking the medicine, but they can occasionally last for some time. If you’re • Diarrhoea • Breathlessness and dizziness • Drinking lots of water worried about the way you’re feeling, • A headache • Bruising or bleeding easily • Being active when you can. You don’t talk to your care team. • High blood pressure have to go to the gym. When you feel • Confusion or dizziness up to it, it can help simply to be up • Pain when swallowing and about doing everyday things • A sore mouth • Coughing or shortness of breath • Pain, redness, swelling or any discharge from a cut or near your IV line • Pain that you didn’t have before your treatment

51 52 LONG-TERM/LATE SIDE EFFECTS You might hear about long-term side WHO’S effects, late side effects or late effects. These are all phrases that are used to describe side effects that last longer than your treatment. To read more about THAT? these, turn to page 142. You’ll be treated by a team of experts who specialise in different areas of cancer treatment.

All of these people have an important Read this guide to who does what. role to play. But there will probably be Find out who’s involved in your quite a few of them, and they often have treatment. Ask them what they like job titles that are difficult to remember. to be called. Write their name(s) in So here’s our advice. the box next to their job description, and just use those names. MEET YOUR TEAM 53 54 CLINICAL NURSE PATHOLOGIST Who’s that? What’s their name? SPECIALIST (CNS) A doctor who studies body tissues An expert nurse who focuses on cancer to look for signs of cancer and other treatment. Your CNS can give you advice Clinical nurse specialist (CNS) diseases. Pathologists will examine and practical support, and they’ll be tissue samples taken during biopsies there for you if you need someone to and other tests. Consultant talk to. They might describe themselves as your ‘keyworker’. PHARMACIST An expert in the medicines used to treat Dietician CONSULTANTS cancer. Pharmacists can let you know Specialist doctors who are experts more about any drugs you need to take, in particular areas of medicine. General Practitioner (GP) as well as talking you through potential For example, oncologists are side effects. consultants who specialise in tumours, Palliative care team neuro-oncologists are consultants PHLEBOTOMIST who specialise in brain tumours and A specialist in taking blood. Physiotherapist and/or haematologists are consultants who Phlebotomists are trained to collect occupational therapist specialise in the blood. blood for testing without hurting you or disturbing your treatment. (If you DIETICIAN Psychologist and/or counsellor have a central line, though, your blood An expert who can review your will usually be taken from your line by diet and help you plan what to eat. a nurse.) Social worker Dieticians will take into account the type of cancer you have, your dietary PHYSIOTHERAPIST AND/OR OCCUPATIONAL THERAPIST requirements and whether you’re Surgeon Experts in helping with physical struggling to eat certain things. problems and movement. Sometimes GENERAL PRACTITIONER Youth support coordinators cancer can affect movements like Or GP for short. Your GP is your normal walking and bending, and physios and doctor and was probably the person occupational therapists can help you Need to add anyone else? What’s their name? who referred you for cancer tests in the regain movement and strength, as well first place. There’s a good chance you’ll as supporting you to stay active and stay in touch with your GP throughout continue with everyday activities. your treatment, as he or she can help PSYCHOLOGIST AND/OR you make decisions about things like COUNSELLOR where you want to be treated. A trained professional who can help you PALLIATIVE CARE TEAM deal with difficult emotions, challenges The people whose job it is to relieve in relationships, decisions about your your cancer symptoms and help you treatment and worries about the future. manage pain. Palliative care doctors can Cancer happens to all of you, not just also work with the rest of your care team your body. It affects your emotions, your to help you and your family deal with thoughts and your relationships with the the impact of cancer on your feelings people who love you, so psychologists and emotions. and counsellors can be a vital part of your team. 55 56 RADIOLOGIST SURGEON An expert at reading scans. Radiologists If you need surgery to treat your cancer, will review and interpret any X-rays, a specialist cancer surgeon will be STAYING IN CT scans, MRI scans and PET scans that in charge during the operation. Your you have, to look for signs of cancer and surgeon will explain what to expect and to see how your treatment is going. check on your progress after the op. HOSPITAL RADIOTHERAPISTS YOUTH SUPPORT AND RADIOGRAPHERS COORDINATORS Experts who give radiotherapy Funded by Teenage Cancer Trust, treatment and control the machines youth support coordinators are there to Your insider’s guide used for X-rays, CT scans and MRI scans. provide emotional support and help you Radiotherapists and radiographers will relax in hospital. They make sure you to life on a ward. explain what to expect before scans and have plenty of chances to socialise and treatment, and you’ll be able to talk to connect with people your age, as well Up until now you might not have spent drug use or drinking. It’s important to them during treatment too. as giving practical help on things like changes to the way you look and going much time in hospitals, and maybe tell the truth to make sure you get the SOCIAL WORKER back to school, college or work. you’ve never stayed overnight. But as best treatment, and your team will keep A trained professional who can help you you start your cancer treatment, it’s everything you tell them confidential and your family adjust to life during and likely you’ll need to get used to regular (unless you say something that puts you after cancer treatment. Social workers hospital visits – either as a day patient or or other people at risk, in which case can help with a huge range of practical for longer stays. they need to pass it on). and emotional issues, from dealing with finances to talking to your parents What to expect depends a lot on where You can also ask to talk to your doctors to working through any problems at you are. You might be on a ward with and nurses privately if you’d prefer. school, college or work. other people your age, like one of our And if you’re on a Teenage Cancer Trust Teenage Cancer Trust units. You might be unit your youth support coordinator can SPEECH AND in a specialist cancer centre. Or you might help you with any tricky conversations. LANGUAGE THERAPIST be in a ward with older or younger people. An expert who can help you talk and LIFE ON A SHARED WARD communicate. If you have mouth cancer, WHEN YOU ARRIVE It can take a while to get used to staying throat cancer or a brain tumour and your Wherever you are, if you’re staying in a shared ward, but people often say speech or swallowing is affected, speech overnight, you’ll get asked a lot of they get a lot from it. You and your therapists will help you learn to make questions – your address, your number, family are guaranteed constant support. yourself heard again. if you’ve got any allergies, how you’re You’re surrounded by people who are feeling, whether you’re taking any going through similar things – which medication and so on. The answers is probably why lots of people end up mean the staff can help you settle in and forming life-long friendships in hospital. make sure you’re comfortable. And if you’ve got questions about anything from taking medicines to You might get asked about things you’d coping with treatment, you’re definitely T rather your mum, dad or carer didn’t in the right place. know about – like your sexual history,

57 58 There can be downsides, though, so it’s Even if you don’t feel like it, sometimes BOREDOM-BUSTING TIPS • Get creative. Letting out how you’re worth trying to prepare for that as well. getting out of bed, spending time with Staying in hospital for a while can get feeling can really help, especially on People nearby might not be doing too other people or going for a walk can end pretty dull. But there’s plenty you can do tough days. Start a blog, draw pictures well. Privacy can be hard to come by. up making you feel better. A change of to show boredom who’s boss… or write poems, a diary, a novel or And while you’ll have a curtain to pull scenery or some company can distract whatever is on your mind • Make the place your own. Bring around your bed, getting real me-time you and help break up the day, as well as posters, pillows, photos, that teddy • Learn something new. Knitting. isn’t always easy either. helping you feel a sense of achievement. bear you’ve had since you were five: Crosswords. Sudoku. Rubik’s cube. If you’re having a tough day, little And try not to compare yourself whatever makes you feel at home Sign language. Painting. Games on your mobile. There are plenty of ways things like beeping machines and other with anyone else. Everyone has a • Make a visitors book. Get people to keep your hands (and mind) busy people’s noisy visitors can seem pretty different experience of cancer, and to write in it every time they come: from the comfort of your bed annoying. On days like that, take a walk everyone responds differently to perfect bedtime reading, and good if you can, reach for your headphones treatment. If you’ve got questions about to look back on when you’re out • Keep a diary. Writing down your or just take a few deep breaths. It’s how your treatment is going or about of hospital thoughts can stop them going round surprising how filling your lungs nice and life in hospital, chat to someone in your and round your head. And keeping a • Get your friends over. Make sure slowly can help frustration disappear. care team. diary can help you look out for things you let people know if you want that make you smile or laugh, too If you’re feeling OK, you won’t need to STAYING IN A SINGLE ROOM visitors. Then play cards. Take stupid spend all day in bed. You can get up and There might be times during your photos. Chat about what they’ve been • Chat to people. You don’t need to wander about, and lots of wards have treatment when you need to stay in a doing. Do whatever you’d normally do be sociable the whole time, but you places where you can relax and watch single room. It can be a good chance to never know who you might meet on • Take photos. And ask people to TV outside of your room. You’ll usually get a bit of peace and quiet, but if you a ward print them out and bring them in next be able to wear your normal clothes, and get bored easily it’s a good idea to fill time they visit • Find out what’s happening. there might be a hospital shop or café up your phone or tablet with TV shows, If there’s a youth support coordinator you can walk to – as long as your doctors films, songs and books beforehand. • Chat to the staff. They always or play specialist on your ward, and nurses are happy for you to leave have good stories. It’s part of the job If people ask if there’s anything you chances are there will be plenty going the ward. need, why not suggest they pay for a few • Listen, watch, read, play. Get on – from brunches to pamper days downloads? Or for times when you’re friends to share music, DVDs, books, to circus skills workshops. And if struggling to concentrate, why not ask for hand-held games consoles, magazines there’s something particular you’d like wordsearches or sudokus? They’ll both – whatever they’ve got! Now’s the to try, they can probably help arrange help to keep your mind active. perfect time to get busy with box sets. that too • Go surfing.You’ll probably have • Make plans. One more tip: if you’re at risk of Have a think about Wi-Fi, so use your phone or tablet to getting an infection because of your what you want to do when you get instant message, check the web and treatment, you might only be able to have out of hospital. It’s never a bad idea stay in touch with people. And check a limited number of visitors in your room, to have things to look forward to the resources section on page 172 for and they might have to wear gloves and a • Get some fresh air. Clear your websites you can use to connect gown to stop germs spreading – so keep head with a stroll around the hospital with other young people with cancer your camera handy to get pictures of grounds (but make sure you check your guests in hospital gear… • Listen to audiobooks. These are with your doctors and nurses that this great, particularly if you’re tired. Put is OK first) your headphones on, close your eyes and go wherever you fancy…

59 60 READY TO LEAVE It can help to: If you’ve been in hospital for a while, • Pin the hospital phone number you’ve probably spent plenty of time somewhere obvious at home and save REMEMBER thinking about going home. But when it to your phone contacts the day comes to leave, it can actually • Keep your clinical nurse specialist’s feel pretty scary. phone number handy (or your keyworker’s number) After all, in hospital, you’ve never been YOU’RE far from expert care. Everywhere you • Ask a clinical nurse specialist to come look there are doctors and nurses and and visit you at home medical kit and all sorts of other things • Talk openly to your family once you that make you feel safe. get home, letting them know what you’d like them to do and what you’d THE Heading home – away from all of those like to do yourself things and your hospital routine – might • Have a plan, so everyone at home leave you feeling slightly out on your knows what to do if you’re not well own. If you feel that way, don’t worry: it’s totally normal to be a bit anxious A WORD OF WARNING… when things change. Once you head home after a hospital stay and start spending less time Remember, though, that your medical thinking about the physical side of team will only send you home if they’re things – treatments, tests, appointments completely happy that it’s the right time and so on – you might find the for you to go. And all that support is still We’ve mentioned this a few times now, If you find yourself in this situation, emotional stuff suddenly hits you. there for you if you need it – just call the but that’s because it’s important. With try to raise it with your care team. hospital if you’re worried about anything. No matter how much you want to be lots of doctors and nurses looking out Your hospital will have staff whose job well again, it’s still not easy to go back for you, it can be tempting to simply sit it is to support people from different to being treated like everyone else. Head back and do as you’re told. But if you backgrounds, and all staff have a to page 99 to find out more about how don’t want to do that, you don’t have to. responsibility to provide the same care coping strategies can help you deal with to everyone. If you prefer to be seen by your feelings. If something is bothering you, let your a male or female doctor, ask to see if this care team know. If you don’t like the is possible. You can also take someone food, mention it. If you want to go to with you to appointments. sleep later or get up later, don’t keep it to yourself. It’s often possible to get And if English isn’t your first language, things changed. translation services will be available. It’s really important you understand CULTURAL DIFFERENCES what the people on your care team You might find that there aren’t many tell you, so if you don’t understand people from your cultural or religious something, ask again until you do. background in the hospital. We know that for some people this can make it harder to talk about symptoms or problems.

61 62 PREPARING FOR TRANSITION • Learn about what it means to live One of the best ways to get ready for healthily – from exercising and eating TRANSITION adult services is to learn more about well to keeping clear of cigarettes, your cancer, your treatment and possible drugs and alcohol. (You can read more side effects. It can be useful to: about that over the next few pages.)

What happens when it’s time • Chat to your doctors and nurses and It can seem like a lot to take in, but ask them to explain anything you’re there’s no rush. Getting more involved in to move to adult services? not sure about. (Don’t worry if they’ve your treatment can actually help you feel explained things before – they know more in control. this stuff is complicated and you’ve got There might come a time when you people. This might not be the hospital plenty on your mind.) DEALING WITH YOUR PARENT/CARER need to move from services designed closest to your home, but it’ll be • Find out what support is available to It’s worth bearing in mind that this can for children or young people to services the place where you’ll get the best help you through the transition to adult designed for older adults. That might treatment. The exception to this is be a tricky time for parents and carers. services. Hospitals often employ staff It can be frustrating if they’re struggling mean moving from a children’s ward if you need very specialist care, like to make the shift as easy as possible or a young person’s ward to an adult specialist surgery. If that’s the case to hand over responsibility to you, but • Ask your parent/carer to involve you in ward, or it might mean seeing doctors your treatment may need to take it’s probably not because they don’t things they usually take care of – like and consultants who specialise in place at a hospital or unit that’s not trust you. Letting your kids do things for booking appointments, sorting out treating adults. part of a PTC themselves is hard, and it can take time prescriptions and asking questions for parents to adjust as roles change. Whatever it means, it can feel pretty • If you’re 19 to 24, you should have about your treatment the option to be treated at a young If you’re feeling stifled, try to have an scary, especially if you’ve been on one • Have appointments (or part of people’s PTC, but you can also choose honest conversation about it. It’s a good ward or seen the same doctors and appointments) by yourself, without a hospital that has been approved to chance for all of you to be open about nurses for a while, but try not to worry your parent/carer – you shouldn’t be rushed. If you do feel provide cancer care for young adults how you’re really feeling. Chances are things are moving too quickly and it’s • Make sure you know who to contact they’re trying to do what they think is You’ll only be moved from one place to making you anxious, talk to your care in an emergency and what counts as best, rather than trying to annoy you. another when you’re ready, so these age team. They will help you understand an emergency And it might be that you’re all reacting groups are only a guide. Talk to your what’s going on and feel more in control. to the changes that transition brings, so doctors to find out more about your • Talk to your care team about try and be understanding. AGE GROUPS EXPLAINED situation – and remember that there is how your diagnosis could affect you Where you are treated depends on a lot always plenty of support available for in the future There’s more information about handling of things – like where you live and what you, whatever age you are. your parents and carers on page 104. type of cancer you have. But the general WHEN DOES NHS rules are: TRANSITION HAPPEN? • If you’re under 16, you’ll be treated There’s no set date, and you definitely on a children’s ward. (Although if won’t turn up for an appointment one day you’re 13 or older, you may also be and suddenly be pointed to adult services. treated in a young people’s unit.) Your doctors and nurses might have an idea of when you’re ready to move, but • If you’re 16 to 18, your treatment you need to be involved in that decision should be provided at a Principal too. So be open about how you’re feeling Treatment Centre (PTC) for young and try to talk through any concerns. 63 64 CHOOSING WHERE TO GO You might be able to choose between different hospitals, clinics and other STAYING services. If that’s the case, your nurses and doctors will chat to you about what’s available at each of them. It’s a good idea to go for a visit too – to get a HEALTHY feel for the places and see whether they seem right for you.

WHAT’S DIFFERENT? Weird one, right? You’re living Once you’re in adult services, doctors with cancer and we’re talking will expect you to know more about your condition and you’ll be responsible HANDY QUESTIONS about staying healthy? Well, it for turning up for appointments, taking • What’s the plan for my transition? your meds and so on. There’s no need to might seem odd, but looking • What will be different about panic though – start learning and taking adult services? control before the transition and it’ll be after yourself can make a real second nature by the time you move. • What support is there to help with the transition? difference to how you feel. Adult wards do look different to • Do I have a choice of which hospitals children’s wards and units for teenagers and services I can use? and young adults. They can feel different EATING WELL Whatever your experience is, try not to • Can I visit wards and services for a too, especially if there aren’t many When it comes to food and cancer, the let food get you down. It’s important to look around before choosing? younger people there. theory is pretty simple. A healthy, varied try and eat plenty of: • Do you know any young people I can diet is important, because it gives your • Fresh fruit and veg But hospital staff might be able to put talk to about moving on from services body the energy it needs to fight cancer. you in touch with young people on for teenagers and young adults? • Quality proteins (like beans, eggs, In practice though, it’s not always that other wards, and you can always invite • What do I need to know before fish, meat and nuts) easy. Sometimes you just need to eat your friends over. Even if you feel a moving to adult services? • Carbohydrates (like bread, pasta, what you fancy. Some treatments might bit lost at first, pretty soon your new potatoes and rice) surroundings will feel totally familiar. It Top tips: make you feel sick, so you end up losing can help to think about other transitions Learning more about your cancer weight because you can’t face eating. But worrying won’t make food easier to you’ve been through – like how quickly can make the transition to adult Others – like steroids – might make you stomach. So eat what you can when you you settled into secondary school after services a lot easier. Just make put on weight, so you end up feeling can. And turn to page 50 for some ideas leaving primary school. sure any info you read is reliable self-conscious and not wanting to eat. that might help. – head to page 11 for more about that.

65 66 BEING ACTIVE SLEEPING There might be times when exercise is Cancer can leave you feeling the last thing on your mind, so don’t exhausted, so you’d think sleeping push it. If you’re feeling wiped out would be easy. Sadly it’s not always during treatment, your body is asking that simple. Feeling stressed or unwell to recover. It’s important to listen. can stop you from drifting off, and sleeping in a hospital is never the But on the days you do feel better, same as curling up in your own bed. being active can give your body and mind a boost. You don’t need to run a It’s important to get plenty of sleep marathon or end up covered in sweat. though, because it can make your Instead, set yourself small, achievable treatment easier to deal with and targets – especially if you’re not in the can improve your mood and mood for exercise – and give yourself concentration too. credit for what you can do, rather than setting your expectations too high. It’s Here are a few tips you might like to try: better to do something manageable • Relax in the evenings - Watch a than nothing at all. DVD. Listen to music. Do whatever makes you feel calm – and try not to stress • Give up easily We’re talking: about anything that’s on your mind - It’s not advice you • Avoid certain foods – ask your doctors hear very often but, when it comes to and nurses for a full list • A walk around the park • Have a routine - Going to bed and sleeping, it makes sense. If you can’t • A few squats or stretches waking up at the same time every day • Make sure your food is always washed sleep after 20 minutes, don’t keep helps your body know what to expect. and cooked properly • Going swimming with friends tossing and turning. Do something Even little things like opening the (check this is OK with your care to relax your mind – like reading or • Avoid spending time with people curtains to let in light every morning team first, though) listening to music or the radio – and who are ill can help then try to sleep again once you • A bike ride • Ask people who have been ill recently • Avoid caffeine before bed - start to feel sleepy. You might find • A gentle exercise class – not to visit until they’re better Reach for a glass of milk or water, like Tai Chi or yoga imagining a journey you know well rather than an energy drink, coffee helps you drift off too • Use the proper sterile procedure to Whatever you do, there are plenty or coke clean your central line, if you have one AVOIDING ILLNESS of benefits. Exercise can help you: • Exercise - Like we said earlier, if (your nurses will tell you more about Some cancer treatments – like chemo you feel up to it, gentle exercise will this, and you can see more about • Feel better about yourself and radiotherapy – weaken your immune leave you feeling ready for a good central lines from page 35 onwards) • Get together with friends system, which means you might be more night’s sleep • Feel energised and less fatigued likely than normal to get ill. To try and Top Tip: If you do think you might • Write down difficult thoughts- avoid infection, it can help to: have an infection, let your doctor • Get to sleep more easily If you find yourself lying awake • Wash your hands often and well. or clinical nurse specialist know • Deal with your emotions thinking about the same worry or If you’re in hospital and there’s straightaway. It’s important to get • Keep your bones strong problem over and over again, try to one of those illustrated guides for the right treatment as quickly write it down so you can come back • Heal tissues and organs that have handwashing on the wall, follow the as possible. to it in the morning. The middle of the been damaged by cancer treatment steps, surgeon-style night is never a good time to figure things out

67 68 DRUGS AND ALCOHOL

It’s important to be straight with your doctors and nurses if you smoke, drink alcohol or take drugs.

Don’t worry – we’re not here to tell you make matters worse – just think how that drugs, cigarettes and alcohol are you felt if you’ve ever had a hangover bad for you. That’s not exactly a secret. or a comedown and you’ll know what But it is important you know that all of we mean. those things can have an impact on your BE HONEST TIME TO QUIT? cancer treatment. And by not drinking, Drugs and alcohol can: Your doctors and nurses might ask Maybe you’ve tried to give up drinking, smoking or getting high now, you can • Interfere with treatments like if you’re taking anything now or have smoking or taking drugs in the past, give your body the best chance of chemotherapy and radiotherapy done in the past. They’re only interested but haven’t quite managed it. Hopefully dealing with cancer. in your health, so everything you say you’ll agree it’s worth another go now. • Make side effects worse is confidential and you won’t get in But before trying, it’s best to discuss this WHY DRUGS AND CANCER • Increase your chance of getting any trouble. with your care team. DON’T MIX breathing problems and chest infections Cancer and cancer treatments mess Long story short: if you’ve used legal We’re not telling you to stop forever – with your body. They can hit your • Increase your risk of other side or illegal drugs – from alcohol and although it’ll be better for your health energy levels and make you more likely effects, like liver problems cigarettes to weed, coke, ecstasy, in the long term if you do. We just to get infections. Drugs and alcohol only • Increase your chances of getting ketamine or whatever – don’t pretend want you to know that it can make a other infections, especially if you’re you haven’t. It’s better if the people difference to your treatment. sharing needles looking after you know, and you can talk to your medical team in private, Ask your care team for information • Mess with your head, making it more without your parents being there. about organisations you can contact difficult to cope for support to give up cigarettes, alcohol and drugs.

69 70 LET’S TALK IT’S ABOUT SEX COMMON TO LOSE That’s right. It’s time to cover INTEREST IN the stuff you’re probably interested in but not all that happy talking about.

Having cancer doesn’t stop you being interested in sex. Sure, there might be times when you’re not feeling sexy in the slightest. And there might be times when you’re sick or exhausted and sex is the last thing on your mind. SEX LOSING INTEREST IN SEX Top tip: Try and talk to But on the days when you’re feeling This is common and can happen for lots your partner. OK, you might find that sex creeps into SEX AND CHEMOTHERAPY of reasons, including hormonal changes, your mind. It’s only natural. And the If you’re having penetrative sex and you tiredness, anxiety and just not feeling If you’re in a relationship and lose good news is that, unless your doctor or your partner is having chemo, always great about yourself. Whether you’re interest in sex, try and talk to your tells you otherwise, you’re fine to have use a condom – even for oral sex and single or in a relationship, you might partner to help them understand what’s sex. (Remember that the legal age to even if you’re using other contraception. find your confidence takes a hit, so you going on. have sex in the UK is 16 for you and your That’s because it’s possible for men feel less comfortable being physically partner, though.) and women to pass on chemicals from Reassure them that they’ve not done intimate with people. Losing interest in chemo drugs during sex. anything wrong. Let them know what sex can be a side effect of radiotherapy If you’re having penetrative sex, you you’re going through. Listen to what and certain drugs too. do need to use a condom. That’s really So keep a pack of condoms handy – they’re thinking. important. So stay safe and check with and use them for at least a couple of Often once your treatment is over your doctor or nurse if there are any weeks after treatment. They’ll prevent You might be feeling pretty unsexy you’ll start to feel like having sex again. other precautions you should take. pregnancies and stop you picking up but that doesn’t mean they’ve stopped But if you’re still not as interested in sex anything nasty, too. finding you attractive, so try not to as you were a while after treatment, it push them away. And remember there’s can be helpful to talk to a psychologist plenty you can do to enjoy each other’s or counsellor. company without having sex.

71 72 WHAT’S GOING ON You might not come when DOWN THERE? you have an orgasm. Cancer and cancer treatment can cause This happens if you have your prostate FERTILITY various changes that affect sex... gland removed. It’s called a dry orgasm and it’s nothing to be worried about. FOR THE BOYS Some people say that it doesn’t change You might find it hard to get hard. the way an orgasm feels; others think it Kids? Me? When you’re young and Getting an erection can be difficult if: can make things feel a bit less intense. diagnosed with cancer, you need • Cancer or cancer treatment has FOR THE GIRLS damaged nerves and blood vessels to think about loads of things you in your pelvis You might find your vagina is dry. probably haven’t thought • You’ve had surgery to your prostate, This is caused by low levels of the bowel, testicles, bladder or rectum hormone oestrogen, and can make about before. sex painful or uncomfortable. Various • You’ve got low levels of the hormone treatments, including radiotherapy to testosterone. Testosterone can be your pelvis and chemotherapy, can reduced by radiotherapy or surgery Even if kids are the last thing on your If this could happen to you, it might be reduce your oestrogen levels. Your to your balls, or by treatment to the mind right now, in a few years’ time you possible to freeze your sperm now in a doctor or nurse will let you know if pituitary gland in your brain might feel differently. And there are sperm bank – making it more likely that there are tablets or gel that are suitable things you can do now to increase your you could still have a family in the future. for you to use. Water-based lubricants, Stress and tiredness can also have chances of having a family in the future. Your doctor will be happy to let you which are available at pharmacists, an effect. know more about this. should help too (just make sure you TREATMENTS CAN AFFECT FERTILITY If this happens to you, don’t be choose a lubricant that is safe to use THE DETAILS: WOMEN Chemotherapy and radiotherapy can embarrassed to talk about it. To your with condoms). affect your fertility, and so can surgery If you’ve started having your doctors and nurses it’s just another Surgery might affect parts on parts of the body involved in periods, cancer treatment can medical conversation, and one they’ve of your body linked to sex. reproduction – like ovaries and testicles. sometimes affect your fertility by: had plenty of times before – and you If you need to have surgery on your • Messing up the production of can ask to speak to a man if you’d prefer. Plenty of people have these treatments breasts, you might find that your body hormones involved in reproduction They’ll be able to help you understand image is affected and you feel less and go on to have kids – but it’s things that might help – whether it’s like having sex – particularly at first. important to talk to your doctor about • Affecting your ovaries ways to manage stress, Viagra or Surgery on parts of your body including the likely effects of your treatment. • Damaging the lining of your womb, or vacuum pumps. your uterus, ovaries and vulva might THE DETAILS: MEN requiring your womb to be removed if change the way you feel about sex too, you have certain types of cancer You might find it hurts to come. or might make it more difficult to have Cancer treatments can sometimes This can happen if part of your penis It’s also possible for chemotherapy to sex. If you’re worried about any of these affect your fertility by: called the urethra gets inflamed make you have an early menopause things, try and let your doctors and • Messing up your sperm production during radiotherapy. This usually stops nurses know. (the menopause is the time women stop happening a few weeks after treatment. • Messing up the production of producing eggs). In the meantime, you might want to stop hormones involved in reproduction If any of these things could happen having sex. • Damaging nerves and blood vessels in to you, it might be possible to freeze your groin, making it difficulto t get an embryos (eggs that have been erection or come

73 74 fertilised), eggs or tissue from your QUESTIONS TO ASK ovaries to use in the future. Your doctor When you talk to your doctor will be happy to let you know more about fertility, you might like about this. to ask: WHEN TO • Whether treatment will affect Periods your fertility Your periods might stop or become irregular during your treatment, but this • Whether it will affect you permanently WORRY doesn’t mean there’s no chance of you or temporarily having children. Periods often come • Whether it’s possible for you to store back after treatment is over. Chat to eggs or sperm your doctor or clinical nurse specialist • Whether the treatment could affect Your doctors and nurses will let about this if you’re worried. your periods you know any potentially serious GETTING PREGNANT • What contraception will be best for It’s not a good idea to try to have a you during treatment symptoms to look out for during baby during cancer treatment, as the • What fertility treatments might be your treatment. If you get any of treatment could harm your baby. It can possible after treatment happen, though, so if you do have sex • How long after treatment you should these, act fast. during treatment, make sure you play it wait before trying to get pregnant safe. You can chat to your doctor about • Whether any other treatments the best type of contraception for you A lot of us aren’t great when it comes If that sounds like you, it’s time for a might work (and doctors talk about things like that to calling the doctor. We ignore things. change. During your treatment, your every day, so there’s no need to be We make excuses. We say we’ll call but doctors and nurses will let you know any embarrassed). then it gets late and we’re tired and symptoms that might suggest there’s a It’s usually best to wait a while before we’re busy and we’ll-definitely-do-it- problem. If you get any of these – and trying for a baby after treatment, so tomorrow-honestly. even if you’re not sure but think you check with your doctor or clinical might have some of these – it’s time to nurse specialist if you’re thinking about get on the phone. Delaying will make starting a family. things worse.

FERTILITY TESTING After cancer treatment, you can be tested to check your fertility levels. It’s worth thinking carefully about this and maybe chatting to someone close to you about how you would deal with bad news. You might prefer not to be tested, or to wait. And remember that infertility caused by treatment can be temporary – so your first test result isn’t necessarily a final result.

75 76 WHAT TO LOOK FOR FEVERS KNOW YOUR Your doctors and nurses will give you Getting a fever – so you feel like a specific list of symptoms to watch you’re burning up – can be a sign that NUMBERS for, but you might need to call your you’ve got an infection, and getting hospital if: an infection during cancer treatment • You have a temperature of 38˚C can be a problem. or above Use this section to write down the numbers you need to call if you’re That’s because your immune system worried – and tell your family and friends these numbers are here. • You’re bleeding (including nosebleeds, might be low, so you’ll struggle to bleeding gums or blood when you go fight the infection on your own. If to the loo) that’s the case, you’ll need antibiotics as soon as possible. Who ya gonna call? What’s their number? • You notice you’re bruising more easily than normal If you feel feverish, call your doctor, • You have red or purple spots on nurse or the hospital straightaway. Don’t your skin wait until the morning if it’s late at night, and call before taking any medicine. • You have a headache CHICKEN POX • You start coughing If someone you know gets chicken pox • Your appetite changes during your treatment, you should ask your doctors and nurses whether it’s • You vomit a lot safe for you to see them. • You have less energy than normal You might have had a blood test at the • You start feeling vague or confused start of your treatment to check whether • You start going to the loo more you’re immune to chicken pox, in which or less often case the results of that test will now come in very handy. • It hurts when you go for a poo, or there’s blood But, in general, if you’ve definitely had chicken pox, you should be OK (though • You have a sore throat, rash or earache it’s always worth checking with your • You get a pain that you haven’t had care team). And if you haven’t had it or before or that gets worse it’s not certain that you’ve had it, your doctors and nurses may tell you to steer • You get any new lumps clear of the person who has it until their If you get any of these symptoms, rash has crusted over. you don’t need to wait for your next Top tip: Before you take any appointment. Just call and speak to drugs like paracetamol or one of your doctors or nurses. ibuprofen to make you feel better, check with your doctor or nurse.

77 78 NOTES

Head spinning with medical jargon? Woken up in the night with a question for your doctor? Then this is the page for you. HEART STUFF HEART STUFF HEART

79 HEART STUFF FEELINGS… ABOUT LET’S TALK have cancer. to describewhatit’slike That couldhavebeeninvented ‘emotional rollercoaster’? So youknowthatphrase go away. go ignore your emotionsandhopethey’ll things to yourself. You might prefer to the kindofperson wholikes to keep what you’re feeling, especiallyifyou’re It canbetricky to let otherpeopleknow about-it normal. it’s absolutely, positively, no-doubt- feel. Whatever you’re goingthrough, that there’s noright orwrong way to But themainthingto remember is be sure what itisyou’re feeling orwhy. emotions. Sometimes you might noteven You might experience allkindsof OPENING UP a difference. name to what you’re feeling makes them. Andsometimes just putting a down oreven to talkto yourself about emotions, itcanhelpto write them If you struggle to talkaboutyour dealing withit. going through isanimportant partof be, findinga way to express what you’re act differently too. Soashard asitcan makes thingsworse. Itcanmake you Keeping feelings bottled upusually Unfortunately, that’s nothow itworks. 80 80 • Angry - So here’s the thing: cancer • Frustrated - You might feel like isn’t fair. You know that. We know that. you’ve lost your independence, which And here’s another thing: it’s totally can be particularly annoying if you’re natural to feel seriously angry used to doing things for yourself. TRY Having to take advice all the time can because of that. Most people ask WHY ME? – and the fact that it’s not be tough too. TO your fault probably won’t make you It can be a good idea to let people feel any better. know if you need some space or don’t You might constantly feel a bit need help – chances are they might annoyed, or the tiniest things might not realise. And you’ll probably feel NOT better for letting your feelings out too. BOTTLE send you into a rage. You might snap at your doctors and nurses or at the • Guilty - Weird one, this. It doesn’t people closest to you – and then feel make any sense – because you’ve not guilty and more angry at yourself. done anything to cause cancer – but They’re all understandable ways to IT ALL UP since when did feelings make sense? act, but it is important to try and find The truth is that people feel guilt for things that calm you down, instead all sorts of reasons after a cancer of bottling it up. See page 97 for a few You might be… information about what you’re going diagnosis. You might blame yourself ideas that might help. • Shocked - Even if you suspected through. See page 11 for more advice. for getting ill or feel like you’ve made something was wrong, hearing a You might find out you’ve actually • Sad - There are lots of reasons life harder for your family. It’s easy doctor mention cancer for the been worrying for no reason – and just you might feel sad when you have to get caught up in thoughts like first time probably sent your admitting you’re afraid can feel like a cancer. Changes to your body, health, that, but they don’t help, so try to head spinning. massive weight off your chest too. lifestyle and relationships can all bring remember this really isn’t your fault. Shock can do strange things to you. you down. And don’t be surprised if people in • Uncertain - Not knowing what’s You might have felt like you were your family feel guilty too – that’s going to happen is one of the It can help to think about what usually watching the conversation happen also not unusual. You might even find toughest things about cancer. You makes you feel better – like calling from a distance. You might have that knowing you feel the same way want to know everything is going to your friends or listening to music – so struggled to focus or not really have actually helps. Acknowledging guilt be OK and you want to plan for the you can do those things if you start to heard what the doctor was saying. You can be the first step in letting it go. future, but instead you’re stuck in an feel low. might have cried or felt exhausted. endless waiting game. And remember that sadness should These are all very common reactions come and go. If it feels constant or to shock. It’s easy to feel overwhelmed, but it can help to focus on the things you you lose all hope for the future, this • Scared - There’s no shame in feeling can control – like looking after yourself could be symptoms of depression. afraid. No matter how tough you are and eating well – rather than the Depression can be treated, so it’s – and no matter how old you are – things you can’t. important to ask for support. See page IT’S OK 91 for more information about this. cancer can be scary. If you’re worried And try to remember that cancer TO HAVE A about anything, from treatments treatments are improving all to what could change in your life, the time too. it often helps to try and find reliable BAD DAY

81 82 • Embarrassed - It’s not easy dealing If loneliness is a problem for you, it with some of the changes cancer can really help to talk to other young and cancer treatment can cause. You people who have had cancer. Everyone COPING might feel embarrassed if your body is different, but you’ll probably have changes or if you can’t do things you plenty of experiences in common. used to do. You might feel like people Visit www.teenagecancertrust.org/ are staring at you, or you might not to find out how to STRATEGIES usefulcontacts know how to answer questions about connect with young people near you. your cancer. And remember that you can always speak to a member of your care It can help to think about what UNCOVERED team too. you’re happy to tell people – and to tell yourself that people usually • Withdrawn - There might be times ask questions either because when you just want to head to your Feeling stressed? Not been a good they’re genuinely interested or bedroom, close the door and be because they’re feeling left by yourself. That’s OK, but if day? You need a coping strategy… embarrassed themselves. you find you’re shutting yourself off most of the time and never feeling • Jealous - It can be tough seeing your • Talk like showing your face, you might be A coping strategy is basically anything - From a good rant to a good brothers, sisters and friends going out becoming depressed. Turn to page 96 you do to make yourself feel less cry, speaking to people is usually and doing the stuff you’d love to be for more advice. stressed. Ever taken a few deep breaths better than staying silent doing. If you are feeling jealous, try to calm yourself down before an exam? • Be the boss - Getting involved in and talk it through with them. It can STAYING POSITIVE That’s a coping strategy. Ever taken a decisions about your treatment – from help to let them know you’d like it if There’s a good chance people will tell friend with you when you’re nervous when you want to be woken up to they still invited you places – and that you how important it is to stay positive. about going somewhere? That’s a what you want to eat – can help you you’ll be there whenever you feel It’s one of those bits of advice that coping strategy. feel more in control well enough. people say because they care but which We use them all the time without • Choose your friends wisely - don’t always help. • Lonely - Being surrounded by people necessarily giving them a name. And Now’s not a good time to hang out doesn’t always stop you feeling lonely, So while it is worth trying to stay because cancer can be pretty stressful, with people who make you feel and there might be times when you optimistic, don’t worry if you feel it’s a good idea to have plenty of stressed or embarrassed feel like no one really gets what you’re miserable sometimes. It’s natural to coping strategies in place. Have a look at • Do the things you used to do - going through. You might find people have good days and bad days, and these suggestions, and there’s space to It’s easy to forget about seeing friends treat you differently or get distant. feeling negative won’t affect how write your own on page 102. or watching films or playing sport You might have to stay in hospital and your treatment works or make your Everyone is different, but it can help to: or doing whatever you love – but miss out on school, college or work. cancer worse. the normal, everyday stuff is really • Learn about cancer - Some people Or you might feel like you’re growing important. You don’t need to stop No one expects you to wake up with feel better knowing everything they up more quickly than your friends. All living life because you have cancer a smile on your face every day. In fact, can. But have a think: do you like to of these things can make it seem like having a good cry and a moan can know exactly what to expect or find Top tip: Make the time to do you’re on your own. sometimes leave you feeling a whole out as you go along? something you enjoy doing every lot better. • Ask questions - If you’re not sure day, even if it’s just 60 seconds of about anything, ask your doctors and something small. nurses for an explanation

83 84 • Get creative - Write a blog, buy • Get your eight hours - Sleeping some paints, take a few photos, mess well is a big part of feeling well and around with a guitar, take up the dealing with your emotions. Turn to GRIEF drums – whatever puts a smile on page 66 for some ideas that might your face help if you’re struggling • Get organised - Set goals and have • Have a routine - Getting up, going AND LOSS a weekly to-do list – just don’t take on to bed and eating at the same time too much each day can help your life feel less • Laugh - A good giggle just makes out-of-sync you feel better, so hang out with • Accept help - It can be annoying We often only talk about grief and people who know how to tell a joke, or when people constantly want to help, keep your favourite comedies close by but it can also make your life easier. loss in terms of people dying, but • Exercise - A few laps of the pool or Why not think of things you can there’s more to it than that. Cancer the park can help your day seem suggest when people do ask, like brighter, and even doing a few doing the laundry or picking up your can alter your life in lots of ways stretches in bed can help. (Don’t worry favourite magazine? if you sometimes don’t feel up to it, • Treat yourself - It’s really important that make you feel a sense of loss. though – and remember to check with to cut yourself some slack and be kind your doctor or nurse before starting to yourself. We’re talking chocolate, During your treatment, you might feel IS THIS GRIEF I’M FEELING? any exercise.) a curry, getting your nails done, a a sense of loss if: Grief is a totally natural response to massage (check with your doctor or • Have a makeover - Pampering loss. In fact, grieving can help you deal nurse before getting any treatments), • You look different yourself on the outside can make with the losses you’re going through. the cinema, a game of FIFA – • Your body doesn’t work like it used to you feel better on the inside Everyone experiences it differently, but whatever makes you smile • Try something new - Learn • You lose touch with friends or feel left possible signs of grief include: an instrument. Figure out how to • Join a support group - Talking out when you’re with them • Having trouble sleeping do sudoku. Try a new sport. Give to young people who know what • You break up with a partner it’s like to deal with cancer treatment • Wanting to sleep a lot meditation a go. If you’ve got more • You spend time away from school, can help you feel less alone free time and you’re feeling OK, why college or uni • Having sad dreams or nightmares not make the most of it? Top tip: You don’t have to stop • You leave your job • Eating a lot or not eating enough living life because you have cancer. • Your ambitions and job plans change • Feeling really down and crying a lot • Your treatment affects your chances • Avoiding things and places that WHAT’S of having children remind you of how things were • You feel like you’re suddenly growing • Wanting to be alone YOUR up very fast • Feeling angry or agitated • You have to cancel a holiday • Longing for how things used to be • Your confidence and self-esteem • Feeling empty COPING take a hit • Drinking or taking drugs to hide STRATEGY? your feelings

85 86 COPING WITH GRIEF There is a lot of professional support There’s no right or wrong way to deal available. Our Teenage Cancer Trust with feelings of loss and grief. Everyone nurses and youth support coordinators IS THAT reacts differently, so try to avoid have a lot of experience of helping young comparing yourself with other people. people deal with grief. They will always be happy to talk to you. They can also put You might start to feel more positive you in touch with clinical psychologists REALLY ME? pretty quickly or it might take time. You who have lots of techniques and ways of might have good days and bad days. talking that can help people with their You might feel you’re getting over grief and feelings generally. one thing and then feel down about If you have cancer, there can be something else. And the Samaritans can provide confidential support 24 hours a day times when your body hardly It’s all natural – and even if you’re by phone or email. You can call struggling and it’s hard to believe right seems like your body at all. But them on 08457 90 90 90 or visit now, dealing with grief does get easier. www.samaritans.org That thing people say about time being whatever happens, it’s important to the greatest healer is true. Top tip: Ignore people who tell remember that you’re still you. you to ‘get over it’, ‘move on’ or In the meantime, try to avoid putting ‘cheer up’. Deal with grief in your a lid on how you’re feeling. Expressing own way and your own time. your emotions can be a powerful way Worrying about your appearance What matters is how you feel about of dealing with them. It can help you doesn’t make you vain or self- it and how you approach it. Which is change things that are making you feel obsessed. It just makes you human. where psychologists, youth support loss too. So find a friendly shoulder to The media bombards us with images workers and your care team can be cry on if you need to. of what ‘beauty’ is. Often, they’re using useful (as well as your friends and airbrushed images which are impossible family). There’s a lot of professional to match – so it’s not surprising we get help available, so if you’re worried about insecurities about our bodies at the best anything, don’t keep it to yourself. of times. And it can be tough if cancer or Things to know: cancer treatment changes the way your • It is completely understandable to feel body looks or feels, or how it works. less confident or even unattractive It’s about how you feel if your appearance changes with It might sound strange, but evidence treatment – whether that’s losing hair, shows that the way somebody feels changes to your weight or you skin, or about their appearance doesn’t have an amputation. much to do with how they look. • It is OK to mourn the loss of how you One person with a tiny scar can feel looked before – it is a loss after all so devastated. Another person with a more why shouldn’t you feel some grief. obvious change might not feel self- conscious at all.

87 88 DEALING WITH LOSING SOMEONE

Sometimes cancer treatment isn’t

• Do anything you can think of to help future selves to remember when they successful. And if you build close yourself feel more confident. For feel upset. It can help to imagine example don’t stop going out but you are writing this to a friend going relationships during your treatment if you feel anxious in case someone through it. with other young people who then stares at you, take a friend with you. • It’s understandable to feel worried and Or think about how you want to reply less confident about meeting friends pass away, it’s a horrible thing to if people ask about your appearance. or going out. But if you become very Sometimes if you see someone staring have to deal with. anxious about this or stop doing the at you, it’s only out of curiosity – they things you want to do, tell someone might just be wondering where your in your care team early on. This is trousers are from, or they might be You’ll have so much on your mind You might be feeling: because the more you avoid doing going through treatment themselves. already and now you need to try • Sad, in a way that makes you feel certain things, the harder they can Often the best response is to smile at and cope with losing a friend. It’s not empty and totally unable to smile become – and your team can suggest them and turn an awkward moment fair and it’s not easy. some very effective tricks you can try • Lonely, because you’ve lost a close into a pleasant one. to make this easier for yourself. You will get through this though. friend who was probably an important • Don’t lose sight of your strengths Right now that might sound stupid, source of support • Some people can develop something and the things you like about your but things will get easier. • Afraid, because it’s hard not to start called Body Dysmorphic Disorder appearance – really maximise these. thinking the worst about your cancer (BDD). This is when the way they feel It might help to remember that there’s when you’re feeling low • Keep in mind that a lot of appearance about their appearance becomes so no right or wrong when it comes to changes are temporary. distressing that they are unable to grief (or to how you respond to cancer, • Guilty, because you’re still here and function properly in their day to day for that matter). It’s not a test or a your friend isn’t • If you know your appearance is going lives. This is not common but if you’re competition. All that matters is what • Angry, at cancer, at the situation, to change – for example losing your worried about it, speak to your care feels right to you to get through this. maybe even at your friend for leaving hair – you might want to write yourself team or youth support worker so you you behind a letter to read when this happens. can get the right help. People often include things like their strengths and things they want their

89 90 COPING WITH GRIEF It might help to: It’s important to remember this isn’t • Go slow - Don’t expect too much of your fault. Nothing you could have done yourself too soon. If you need time, IF IT ALL would have changed this. Cancer sucks. take time You can’t blame yourself. • Say goodbye - Funerals are painful, If you feel up to it, try and open up but they can be a release too. And if SEEMS TOO about your grief. You can talk to you can’t go to the funeral, you can people close to you, or there are lots always create your own way of saying of professionals out there who can goodbye – like visiting somewhere help. You can talk to your doctors and your friend would have liked and MUCH nurses. You can talk to someone you saying a few words about them or don’t have a relationship with – like a leaving flowers or a letter clinical psychologist or a counsellor. And • Talk about your friend - Or if you Dealing with the emotional you can contact specialist organisations don’t want to talk, don’t be afraid to that employ experts in coping with think about them. Write letters or side of cancer isn’t easy, and loss and grief: poems. Make a book with photos of sometimes you might need • Child Bereavement UK has a them in. It’s not weird or morbid: it’s a confidential helpline 0800( 02 888 40) way of remembering why you enjoyed support if you’re feeling low. and offers advice at their company www.childbereavementuk.org • Laugh - It’s OK, you know. You’ll • Childline offers guidance and probably feel guilty at first, but A lot of us struggle to admit when we’re on speaking about tricky issues on page support all day, every day at 0800 1111 you’re not offending anyone by having a hard time. Instead of confiding 118). Pretending you’re OK when you’re and at www.childline.org.uk cracking a smile in someone or opening up about our not is exhausting, and opening up can • Cruse Bereavement Care • Ask for help - If you need it, there is feelings, we pretend we’re alright and actually help you feel a whole lot better. always support available keep on keeping on. operates www.hopeagain.org.uk WHO TO TALK TO especially for young people Losing someone can also make you think But there’s no reason to feel There are lots of people you can turn who are dealing with grief, with more about your own situation. That’s embarrassed if you’re feeling down. No to for support – from your friends and message boards so you can share very common. But try to remember that one is happy all of the time, and your family to people who are trained in your experiences everyone experiences cancer differently. mental health is just like your physical talking about this stuff, like nurses, health: sometimes you might feel good, You could also try writing your feelings And if you do find yourself getting youth support coordinators, clinical other times you might need help. down. Expressing what you’re going anxious, try to speak to someone about psychologists and counsellors. It can through can be the first step in dealing how you’re feeling. There are lots of It can be tempting to keep quiet to avoid take a few tries to find the right person, with those emotions. people who will be happy to listen. upsetting the people close to you, but but it’s worth making the effort. Try to You really don’t have to face this alone. your family and friends will want you to talk to someone who will: The main thing is not to deny there’s be honest and to focus on your health, anything wrong. If you’re struggling, • Listen to you not on how they might react. say so. Bottling things up doesn’t make • Be there when you need them them go away. So if you are finding things tough, try to • Keep things private if you want tell someone – and if it seems hard, try them to be to work on it (we’ve included a few tips

91 92 IT’S OK TO TALK ABOUT SPIRITUALITY

• Be honest • Religious and community ANXIETY - AND PANIC ATTACKS • Start practicing calming visualisations NO• Not judge you leaders - If you’re a member of a It would be strange to go through cancer - picture images or scenes that make religious group or a youth group, and not feel at all anxious, so anxiety is you feel relaxed and safe • Not try and solve everything you can always chat to one of the to be expected. If the anxiety is really • There are some really powerful apps • Not tell you they know what leaders there intense, it might show itself as a out there that a lot of people find you’re feeling • Psychologists and counsellors panic attack. useful in helping them with anxiety - You could try: - During and after treatment you’ll There are lots of tips to help manage ask your care team for suggestions be able to talk to professionals who • Your parents/carers - You might anxiety, but if you are having panic Panic attacks are trained to help you deal with decide they’re the best people to help attacks tell somebody in your care team When it comes to panic attacks, there’s fear, anger and whatever else you’re you deal with your feelings. Just try to because a psychologist can really help good news and bad news. Yes, panic feeling. You can talk to them about be clear when you need their support you conquer them. attacks are one of the most awful things anything, so it’s a good way to be and when you’d rather be by yourself someone can experience, but they are 100% honest and to have a no-holds- Panic attacks are really scary but the also one of the easiest things to treat • Your brothers or sisters - barred vent, as well as learn some new good news is that they respond incredibly WILL with talking therapy. If you’ve got them, you might feel ways of thinking effectively to some basic techniques. most comfortable chatting to brothers • Support groups - There are various Breathe… and other tips Panic attacks can happen at any time – and sisters – and they might help organisations that can put you in You might find your own ways to deal when you’re waiting for treatment or in your parents see what you’re going contact with other young people with anxiety, but here are some ideas the middle of the night or when you’re through, too who have or have had cancer. While that could help: walking down the street. They are often • Other relatives - It can help to everyone has a different experience, triggered by a particular thought or • Learn an effective breathing talk to aunts, uncles, cousins or chatting to people who’ve been image or smell, but sometimes they feel technique, like the one described grandparents – people who probably through similar things can still be as if they just come out of nowhere. ONEopposite - people often think they aren’t living with you but will have really helpful. Lots of groups are also have tried breathing exercises and plenty of love and support to give you good fun and very social, so you they don’t work but it usually turns • Your doctors and nurses - They’re might find you make new friends. out they’ve not been doing the JUDGE not only there to talk about physical Turn to page 178 for useful contacts technique quite right problems – your care team can also • Online support - It’s easy to find • Avoid caffeine, alcohol and smoking help with the emotional stuff groups, blogs and forums online too. - these can cause your heart rate to • Friends - Sitting down and talking This can be a great way to read and quicken which people often experience through your fears and frustrations share stories and experiences, and you as a symptom of anxiety, so this can with friends can help you deal with can usually post anonymously if you start someone feeling on edge your emotions – and help you feel want to. It’s important to remember more like your old self, too that you can’t always trust everything • If you can, do some exercise you enjoy - this is a very good way of getting your • Partners - Boyfriends and girlfriends people post, though, so tread carefully body to relax and if your body feels can give you the perfect shoulder (visit www.thinkuknow.co.uk for tips relaxed, it’s hard to feel anxious inside. to cry on or laugh on, depending on on internet safety, and see page 16 of what kind of day you’re having this book for more about reliable info) • Teachers - If you get on well with one of your teachers, don’t be OPEN afraid to contact them to ask for a chat – teachers tend to be pretty good listeners 93 UP YOU94 What’s happening? Sometimes you might breathe more FEELING LOW? exercise can lift your mood. It releases You might have heard of ‘fight or quickly and not get enough oxygen Knowing the signs of depression endorphins (chemicals that can make flight’– nature’s way of helping if you which makes things feel even worse (if People experience depression differently, you feel positive) and can leave you with are in physical danger (for example, if your lips have ever tingled that’s a sure but if you have a few of the symptoms a real sense of achievement: just make you were faced with a hungry saber sign to slow down your breathing). below for more than a couple of weeks, sure you set yourself small, realistic toothed tiger). Fear fills your body with or if they keep coming back for a few goals. Staying in touch with people close So what can you do? adrenaline, and blood rushes to the days at a time, try to speak to someone to you can help too. And so can making muscles you need to fight or run away. If you’re having a panic attack about it. a conscious effort to break the cycle of The aim is to get rid of the adrenaline negative feelings. It’s all pretty useful if you come face your body has filled with. How? Change Depression can change: to face with a tiger (not likely). Not so If the depression is severe, you could the levels of carbon dioxide in your • Your mood - You might feel sad, helpful when the anxiety is there because find yourself experiencing suicidal blood. And the way to do that is to helpless or moody most of the time. of cancer. You can’t spring into physical thoughts. If that happens to you, it’s breath out for two seconds longer than You might struggle to concentrate. action by running away or fighting so the vital to get help. Tell a member of your you breath in. You need to do this for You might feel like there’s nothing to adrenaline just stays in your body with treatment team as soon as possible, and at least five deep breaths and you need look forward to. And you might stop no way of being released. if you’re ever concerned for your safety, to time it because it has to be precise! enjoying the things that usually make go to A&E or call 999. You can get in That’s what causes the pounding heart, It doesn’t matter how many seconds you happy touch with the Samaritans for help 24 feeling faint, shaky and sick. And as you inhale for as long as you exhale for • Your behaviour - Crying a lot is a hours a day, every day on 116 123. some muscles fill with blood, others, like two seconds longer. Timing this will also common sign of depression, and so the digestive muscles get less blood to distract your mind from the images or is feeling like you can’t be bothered But the first step is mentioning how them – which can also make people feel thoughts that are fuelling the anxiety. to do anything. You might start to you’re feeling to someone else. So try to sick or have diarrhoea. lack confidence in yourself, too, and start there and talk to the people close become quiet or withdrawn. And you to you to figure out what’s most likely might feel like doing things you know to help. aren’t good for you, like smoking, taking drugs, getting drunk or Remember: You’re not alone. harming yourself Definitely not. Your friends, family and care team are there for you. • Your body - You might eat or sleep too much, or not eat and sleep enough. And you might start feeling sick or exhausted a lot of the time

DEALING WITH DEPRESSION If you are feeling depressed, your doctor can recommend various treatments that might help. A lot of them involve talking – to clinical psychologists, to counsellors and to other people in support groups. Drugs are sometimes used too. There are also various things you can do to help yourself. If you feel up to it, 95 O 96 FEELING ANGRY? • Writing down what you’re It’s not unusual to feel seriously fed feeling - It’s not a test and no one up when you have cancer. But there else has to read it – so don’t edit, RELIGION AND are unhelpful ways of dealing with just vent anger – like taking it out on other • Turning up your music - Metal. people, distancing yourself from family Mozart. Musicals. Whatever makes and friends, hurting yourself, taking SPIRITUALITY you feel better drugs and drinking. And then there • Having a good cry - All of are more helpful ways to deal with it. these ideas basically come down to For instance… releasing what’s inside. So if you feel Living with cancer can make you • Taking some deep breaths - like crying, don’t try and sniff back Concentrate on nothing but your those tears – let it all out ask some pretty big questions, breathing for at least five breaths. • Talking to people - You’re probably even if you’ve not really thought The key trick here is to exhale for two getting used to us recommending seconds longer than you inhale. This this one by now, and that’s because much about them before. changes the carbon dioxide levels in it works. Being honest about your your blood, creating a calming effect. emotions can help your anger Make sure you time this accurately or fade away If religion already plays a part in your Talk to people you trust about it. it won’t work. Timing your breaths can • Learning self-help techniques life, you might find it’s a real source of Religious leaders speak to people about also help because it distracts you from - Cognitive Behaviour Therapy comfort and support for you during your these kinds of issues all of the time, and whatever is making you angry (normally called CBT) might be treatment. Having faith can help you feel they won’t be angry or judge you if you • Shouting - As loud as you can. And a bit of a mouthful, but it can better about what’s happening, and you bring them up. then shouting even louder. Screaming might feel comfortable talking to people actually really help you to deal NEW TO ALL THIS? at the top of your lungs can be an at your place of worship about cancer too. with difficult emotions like anger. Try If you’ve not been particularly interested amazing release, so find somewhere www.getselfhelp.co.uk as a good But you might also find that the in religion before, it can feel pretty weird private and let rip starting place to find out more opposite is true, and that you start to start wondering about gods and • Punching your pillow - It’s a good asking more questions about your faith faiths, but it’s definitely not unusual. way to get aggression out – and a and your beliefs. That’s also completely In fact it’s pretty natural to start asking much better idea than punching a wall understandable. Lots of people find yourself all those why-are-we-here? and (less painful too…) cancer makes them see things they’d why-did-this-happen? - type questions. • Exercising - It works for depression previously taken for granted in a slightly If you do find yourself being drawn and can work for anger too. If you’re different light. towards a particular religion, you feeling physically OK, a jog, walk, It can be a tough time, especially if your might find it’s a huge support. Religion swim or bike ride can really clear family are religious and you find yourself sometimes helps people make sense your mind and help use up some struggling with your faith. Our advice? of confusing and difficult situations. of that angry energy that’s built up It’s the same as it’s been throughout inside you this book: try and be honest about what you’re thinking and feeling.

97 98 And even if you feel religion isn’t really and the way they’re dealing with cancer for you, you might start thinking about treatment – as we’ve said before, other types of spirituality. Again, we’d everyone handles this time differently. NOT A SAINT? recommend searching out a good listener You might find it useful to chat to them and talking to them about this stuff. about their faith and what it means to ITS ALL ABOUT RESPECT them, too. THAT’S JUST If you’re staying on a ward or cancer This can be a difficult time to get your unit, you might meet other people who head around. It’s certainly completely believe strongly in a certain religion or unfair that you’ve got cancer. And have strong views about spirituality. FINE thinking through things like religion It’s important to respect their beliefs and spirituality might just help you get through it a bit more easily. There are lots of things written IT’S OK TO about people who are ‘touched by IT’S OK TOIT’S TALKOK TO ABOUT cancer’ and come out the other SPIRITUALITY side grateful for the experience and IT’S OK TOTALKIT’S ABOUTTALKOK TO ABOUT having discovered the meaning of TALKSPIRITUALITY ABOUT life. If you don’t feel remotely like TALK ABOUT SPIRITUALITY that, don’t worry – and don’t even SPIRITUALITYSPIRITUALITY NO NO WILLthink about feeling guilty. Sure, lots of young people say cancer But while lots of people do feel inspired ONE made them look at things differently, by what they’ve been through, lots of NO NO WILL JUDGEappreciate things more and find strength young people also say cancer didn’t NO they didn’t know they had. It’s not change how they feel about life at all – ONE unusual to want to change things after and that’s absolutely fine. JUDGEWILL cancer treatment, whether that means WILL So if you feel like you’ve somehow failed little things like calling your friends because cancer hasn’t made you see the more often or taking life less seriously, ONEONE WILL world in a new way, it’s time for a reality JUDGEYOUor bigger challenges like running a JUDGE check, courtesy of our 100% accurate marathon or jumping out of a plane. bullet list of how it’s OK to feel during ONEYOU and after treatment… YOUYOUJUDGE 99 YOU 100 NOTES

Need to get your feelings down on paper? Heard some brilliant advice HOWEVER you don’t want to forget? This page should come in handy. YOU FEEL IT’S OK... • It’s OK not to feel special Remember: everyone deals with • It’s OK to get angry cancer differently. The only thing that should matter to you is how YOU deal • It’s OK not to be the perfect son, with it. daughter, brother, sister, friend, boyfriend, girlfriend, grandson, granddaughter… you get the idea • It’s OK not to feel brave • It’s OK to think that cancer sucks • It’s OK to feel negative • It’s OK to change • It’s OK to stay the same

101 102 NOTES A bit more space for whatever you want to write. LIFE STUFF LIFE STUFF

103 LIFE STUFF in casethey start acting differently. about what your parents are dealing with want to do. But itmight help you think freak you out– that’s thelast thingwe as itdoesfor you. This list isn’there to as overwhelming for your parents/carers test, andacancer diagnosiscanfeel just Cancer canputany relationship to the can really help. important –andbeinghonest andopen But keeping friendsandfamily closeis natural canfeel strange andstrained. Suddenly relationships that have been like themjusttobenormal. up actingweird–whenyou’dreally know howtorespond,sotheyend things youdid.Theymightnot probably feelalotofthesame find outyouhavecancer,they’ll When thepeopleclosetoyou AND CARERS LET’S START WITH PARENTS RELATIONSHIPS DEALING WITH to cope. they’re betheirway doing,it’ll oftrying to put onabrave face). Butwhatever (which probably meansthey’re trying They might notseemlike themselves They might beover-protective ofyou. • • • • • Tired andshort-tempered • • Shocked, scared andangry They might befeeling: time off work orpaying thebills Stressed, about thingslike get not besure how t Isolated, becausetheirfriendsmight this outfor you Helpless, because they can’tjust sort don’t seemsoimportant Distracted, becausenormalthings your brothers orsis Worried aboutyou, andabout o help ters ting 104 104 If you do feel like you’re not being If you’re from a family that doesn’t do KEEP listened to, try to talk to your parents conversations about emotions, you calmly about what you’d like from them. might find it helps to write in one of You might discuss: the cards at the back of this book and leave it somewhere where your parents FRIENDS • Who will go to your appointments – or carers will find it. They’ll understand you might want a family member or how you feel – without you needing to friend to go with you, or you might squirm and try and find the right words & FAMILY prefer to go alone on the spot. • How you will be involved in decisions And a lot of families find it helps to about your treatment CLOSE get support from someone outside the • How to keep doing the things you’ve family. Psychologists, counsellors and always enjoyed your care team at the hospital know a GOING BACKWARDS? If they are being over-protective, it’s • How you’ll stay in touch and tell your lot about the impact of cancer and can If you get cancer as a teenager probably because they’re worried about family what’s happening – maybe you help you, your parents/carers and your or in your early twenties, you can you, but it’s still a good idea to let them want to know they’re always a phone brothers and sisters talk honestly about suddenly find yourself spending a lot know how you’re feeling. Chances are call away, rather than with you the how you’re feeling. You’re all trying to more time with your parent/carer – they won’t know what you need from whole time figure your way through this, and talking just when you were getting used to them otherwise... • Why it’s important to be left alone about it honestly usually makes you feel spending a lot less time with them. when you need space a lot better. And losing that independence can TAKING CONTROL • How to keep everyday life as normal be tough for everyone. Even though you sometimes might Turn to Page 178 for cancer support feel too exhausted to do anything for as possible organisations. You might need your parent/carer for yourself, it can be really important to try emotional support or for practical things and hold on to your independence and Your care team will have helped young KEEPING THE CONNECTION like driving to appointments or cooking play a part in decisions that affect you. people deal with these issues plenty Calling, texting and messaging can all you food. You might need to move back of times. So if you think talking to your help you stay connected with family home or to ask for help with things Your parents or carers may feel like family or friends could be tricky, it might and friends. But sometimes, spending you’d definitely rather do by yourself, they know what’s best, and it can be help to chat to the people who are time together in person makes all the like getting dressed or having a shower. tempting to let them take control. If looking after you first. difference. Maybe you plan a day trip that works for you, that’s fine, but there away from home, or an hour or two out And you might need your parent/carer THE EMOTIONAL STUFF might also be times when you need to of the hospital ward to get a change to help out financially too, which can Sometimes you might not want to be involved too – and learning about of scenery. be difficult if you’re used to having your tell your parent/carer if you’re feeling own cash and paying your own way. your cancer and your treatment can help you feel more confident about having scared, depressed, stressed or just in Changes like these can make you feel your say. (And if there are limits to what need of a hug. Maybe you’re worried frustrated and smothered and possibly a you want to know – like the details of a about making them worry even more. bit embarrassed. It can seem like you’re procedure – just let people know before But if you bottle things up, you usually going backwards, and you might feel they start explaining things.) end up feeling lonely or ready to like your parents/carers are fussing or explode. Or both. nagging or treating you like a kid. O 105 106 WHY ARE THINGS CHANGING? • Guilty – When your siblings are It’s always strange if relationships you’ve out having fun, don’t be surprised if BROTHERS taken for granted start to change. But they’re feeling bad because you can’t it’s worth trying to think about what do the same. It’s also not unusual your siblings are going through and, if for brothers and sisters to say cruel things are changing, to try and figure things they don’t mean and then feel AND SISTERS out why. guilty about that. That doesn’t mean they don’t care about you: it’s a pretty Your brothers and sisters will probably common way to respond if you’re be feeling a lot of the things that you’re worried or upset Fight like cat and dog? Get on like feeling. And if they start behaving a house on fire? A bit of both? differently, it might be because they’re • Lonely – If you and your parents struggling to deal with that or trying to spend time in hospital, your brothers Whatever your relationship with keep things as normal as they can. and sisters will probably miss you and miss the way things were. Their friends your siblings is usually like, you You might find your brothers might drift away too, because they and sisters are: don’t know how to react, and that can might find that cancer makes • Scared – No matter how tough they be a pretty lonely experience things a little different. pretend to be, they’ll be worried about you – especially if they feel like your • Worried this is their fault – parents aren’t telling them everything Sometimes brothers and sisters or if they don’t quite understand think they might have done If you have brothers and sisters, you’ll back in your old room, they’ll be going what’s going on something that’s caused your cancer. probably find that lots of things don’t through the same thing (especially if It’s important to let them know that’s change between you. What makes you that room had become their room and • Angry – They might feel left out or not possible. Nothing they – or you – laugh about them will probably still they’ve now been kicked out of it…) annoyed because they have to do did made this happen make you laugh. What annoys you about more chores or because all of the You might find your brothers and sisters them will probably still annoy you. attention is on you (and they might It can all seem pretty complicated. suddenly get really overprotective – so be angry at themselves for feeling But the simple truth is that talking But a cancer diagnosis can affect your you end up with three (or four or five) like that) helps. Even if you’ve got the sort of relationship with siblings too, in lots of parents/carers, instead of one or two. relationship where you don’t usually different ways. Or they might go quiet: staying silent • Jealous – It probably sounds weird speak about feelings and emotions, just and not mentioning your cancer at all. to you, but you’re getting a lot of It might bring you closer as you deal sitting down and being honest with each Either way, it can be pretty weird. attention – and they may not be. It can with this together. Your brothers and other can be a big step forwards. seem unfair if you’re getting presents sisters can be a handy link with your And if you’re in hospital for a while, or not having to do so much around It won’t necessarily get things back to friends, school or college, and you might that can also put a strain on things. You the house, while your brothers and how they used to be, but it usually really find yourself spending more time with might find your brothers and sisters sisters have to pick up the slack helps to clear the air. them than you’re used to. don’t want to come and visit, or it might start to feel like you don’t have as much But it doesn’t always work like that. in common anymore, because you’re not If you need to move back home, for going to school or college together or example, that can be tricky. As you’re spending much time hanging out. trying to get your head around being

107 108 TIPS TO STAY IN TOUCH You might need to take the lead to TALKING FRIENDS help your friends deal with what they’re going through. That can feel pretty frustrating – it’s not like you haven’t already got plenty on your plate – but WILL Your friends might be amazing they might not have been around during your cancer treatment – someone with cancer before, and they’re probably stressing about how to act. REALLY

saying and doing all the right things, Top tip: Try and imagine how your

friends might be feeling. If they’re HELP CLEAR generally being awesome. But cancer acting differently, it’s probably

can put pressure on any relationship, because they care about you but THE AIR aren’t sure what to do. and sometimes even the closest Often all it needs is for you to be friendships get messed up. straight with people and let them know You could: they don’t need to walk on eggshells. • Ask people to keep calling, texting and inviting you out It can help to try and see things from Having your friends around you while instance, or you might not be able • Explain you sometimes might take their perspective. (And if one of your you’re dealing with cancer can be a to do the same things you used to do. a while to reply massive source of comfort. You might friends has ever lost someone they • Make sure you contact them too feel like they’re the people who know But a lot of the time friendships drift loved or if their parents separated, • Let your friends know what they you the best, and you can probably apart because people feel awkward. think about how you felt – probably can do to help be totally straight with them too. Your friends don’t know what to say. pretty awkward.) You might find that Maybe you’ve gone a bit quiet on social your friends are asking themselves a • Let them know if you’re happy to But sometimes people find that even media for a while – maybe they have. whole lot of questions. Like… answer questions their closest and oldest friendships start They worry about saying or doing the to feel strange and strained. There are wrong thing. And before you know it • What am I supposed to do? Even if you can’t always go out and lots of practical reasons why that can you’re not seeing each other as much • What if I say the wrong thing? do the things you used to do together, happen. You might need to spend time as you used to. • How can I help? seeing your friends when you feel up away from home in hospital, for to it can give your mind a rest from just • Is it OK to visit or should I stay away? thinking cancer, cancer, cancer. • Should I talk about cancer or shut up about it? So let them know if you’re happy to • Should I talk about other things or hear the usual gossip and day-to-day will that make me seem selfish? stuff (otherwise they might think it’s too trivial to bother you with). Talking through those questions can really help to clear the air, and so can And try not to worry about sounding letting people know how much their like a whinger when you’re with your friendship means to you. friends, people understand that things are tough for you right now. 109 H II 110 THE TEENAGE CANCER TRUST DRIFTING APART? EDUCATION & AWARENESS TEAM It might be that you get closer than ever You can arrange for our education to some of your friends during cancer BOYFRIENDS experts to visit your school and speak treatment. Having people to listen to to your friends. It’s a great way for you, make you laugh, talk things through people to learn more about cancer and and give you a shoulder to cry on can be to ask questions they might be worried AND just the support you need. about asking you. Search for ‘education’ at www.teenagecancertrust.org to find But you might also find that you end up out more about arranging a visit. losing touch with people. Some of your GIRLFRIENDS friends might not be able to understand IT’S WORTH REMEMBERING… what you’re going through, and might There might be times when your end up not being very friendly. They friends annoy you, especially if you’re might even be jealous of the attention Dealing with boyfriends and feeling crabby or crappy because of you’re getting. Or your perspective on your treatment. It’s only natural and life might change, so you struggle to girlfriends can be a minefield at it probably happened before you had relate to people like you used to. cancer too. But instead of getting angry the best of times. Throw cancer into with them, try to remember that: If this happens to you, try not to let it get you down. Friendships change all the mix and things often get even • Sometimes people don’t know of the time – cancer or no cancer. what to say - so they stay quiet or more complicated. You’ll probably find yourself building say things without thinking new relationships, especially if your • Sometimes people ask silly outlook on life is changing or if you meet If you’re in a relationship, going through this. Your partner might really want to questions - It’s only because other young people living with cancer. cancer treatment can bring you support you but not know how. Stuff like they’re interested And what matters most is spending together, helping you realise just how that doesn’t come out easily unless you • Your friends aren’t deliberately time with people who make you feel much you mean to each other. But it talk about it. trying to annoy you - so if they do can also push you apart, as you struggle good – whether you’ve known them THINGS THAT MIGHT HAPPEN something that gets on your nerves, to communicate like you used to about for years or got chatting to them on the Every relationship is different, but these try to talk it through calmly what you’re feeling and what’s going on. bus this morning. are a few things that can sometimes • Your friends might not realise just Whatever happens, remember you’re happen after a cancer diagnosis. how bad you’re feeling - so they both reacting to a really tough situation • You get closer - We wanted to start might assume you’re feeling happier or YOUR – and you’re both probably feeling a lot with this one because it does happen more robust than you are inside of the same emotions. It’s never easy, PERSPECTIVE and because the rest of the list can • Your friends have their own lives but sharing what you’re going through – seem pretty negative. But lots of and trying not to criticise or blame each - so try not to get upset if they talk couples find their bond gets stronger ON LIFE other – can stop you drifting apart. about school, college or whatever – it during treatment can actually give you a nice chance to You might feel like you’re a burden, or think about something else worry that your partner didn’t sign up to MAY CHANGE 111 112 • Your partner seems distant - • You feel guilty - No matter how And remember that being diagnosed Sometimes people respond to news many times your partner tells you with cancer doesn’t mean cancer is now MEETING they really don’t want to hear by it’s not true, you might still feel like a the only thing in your life. Remember to: blocking it out. If this happens, it can burden. And that can make you worry • Talk about all the other stuff you’ve seem like your partner is ignoring you that they feel stuck with you or are always talked about or doesn’t want to talk about cancer. only with you out of sympathy NEW That can be pretty painful • Plan time to just be together • You change - If your outlook on life PEOPLE • Your partner smothers you - alters during treatment, you might • Laugh together. It’s a pretty good This is the total opposite of getting find you grow apart from your partner. medicine. (Crying can be pretty distant. You might find your partner It can happen in any relationship – effective, too, if that’s how you feel.) IS EASIER suddenly won’t let you do anything whether you have cancer or not TIME TO MOVE ON? THAN YOU for yourself, leaving you feeling There’s never an easy time to end a • Your partner can’t handle it - suffocated and helpless relationship, but having cancer doesn’t Sadly this does sometimes happen. mean you should stay with someone • You seem out of sync - There Your partner might feel they can’t THINK who isn’t right for you. And it doesn’t might be times when you feel glass- deal with this right now and choose mean someone should stay with you half-full but your partner feels glass- to move on Well, here’s the thing. There are plenty when they don’t want to, either. half-empty. Sometimes the opposite of people out there who will like you If you were having doubts about your might be true. This can put a strain on • You can’t handle it - This happens for who you are, and who will see you relationship before your diagnosis, be both of you – but try to remember it’s too. Some people just feel they lack as who you really are – not as someone honest. Even if you and your partner now OK to feel differently about things the energy for a relationship during who has cancer. cancer treatment and decide to call it feel you ‘should’ stay together because of • You worry about how you look - a day what’s happened, that might not really be Not only that, but the internet has made If your body is changing, you might be the best thing for either of you. it a lot easier to meet those people. scared that your partner won’t fancy Top tip: Whatever happens in your Of course, you can still do things like MEETING NEW PEOPLE you any more. And if your fertility is relationship, remember that it’s get your friends to set you up, or join Getting diagnosed with cancer doesn’t affected by your treatment, that can not your fault that you got cancer. a sports club, or hang around in the mean you suddenly stop being supermarket hoping that Mr or Mrs weigh on your mind too HONESTY = THE BEST POLICY interested in relationships. Sure, there Right is doing the weekly shop. But if It’s true. Hiding things causes might be times when you’re feeling too that doesn’t work for you, we have two arguments. Being honest might make for BEING tired to even think about it, but there words: dating sites. HONEST tricky conversations, but at least it gets might also be times when you fancy ABOUT any issues off your chest. meeting someone new. It can be great Try not to let the fear of rejection stop for your self-confidence and help your you from dating. Even if you’re not So if you’ve got any doubts about how life to feel a bit more normal. feeling great about yourself, that doesn’t your partner is feeling or how you’re mean other people won’t find plenty to HOW YOU feeling, get them out in the open and try But how do you go about it? It’s not like in you. to talk things through without blaming something most people find easy at the FEEL or criticising each other. Make sure you best of times, and now you might have Of course, you might meet people you’re FEEL listen too, rather than pressuring your added worries about how your body has not keen on, but that’s just the way it partner to feel a certain way. changed or how tired you sometimes feel. goes. The point is that if you do want to meet new people, there’s no reason you KEY IS KEY won’t end up meeting someone great. 113 114 INTERNET DATING: STAYING SAFE download Childline’s Zipit app. It helps The web is a great place to meet people, you get flirting back under control and but it’s also really important you stay safe has plenty of handy tips and comebacks TELLING and remember that people aren’t always for when people share too much. who they seem. It’s a good idea to: Finally, for a lot more useful info • Be anonymous – Choose a username about staying safe online, head to YOUR KIDS that doesn’t include your full name and www.thinkuknow.co.uk/14_plus don’t include your email address, home address, phone number, workplace or WHAT TO TELL A NEW PARTNER school in your public profile It’s up to you when you decide to tell If you’ve got children, you’ll need • Trust your instincts – If something someone new that you have cancer. doesn’t seem right, or if someone asks You might want to wait until things to try and explain to them what’s for money or says things you’re not seem to be getting serious, or you going on – and you don’t need comfortable with, walk away might want to put your cards on the table from the start. • Go slowly – Once you’ve shared us to tell you that that’s not an anything online, you can’t get it back. Whatever you do, remember it’s not So take care and take your time when something to be ashamed about. Your easy conversation. you talk about yourself. You don’t need partner may even know someone who to share your life story straightaway has been through something similar. When you’re young, your brain is like a PLANNING THE CONVERSATION • Do your own research – If you’ve If your body has changed because of sponge. You soak up everything that’s There’s no point denying it: telling your met someone you like but want to your cancer treatment – if you’ve had a going on around you – even if you don’t kids you have cancer is a horrible thing check them out, a quick search of breast or testicle removed, for instance – exactly understand it. to have to do, and they will probably be Google, Twitter and Facebook can you might want to talk about that before very worried by what they hear. usually show you if they’re who they you get too intimate. It’s not always the So if you’ve got children, chances are say they are easiest conversation, but it can help you they’ll figure out fairly quickly that But by thinking carefully about what you want to say and how you want to say it, • Be smart when you meet feel more comfortable. And it means you something is up – especially if your appearance is changing. For that reason it’s possible to make the conversation someone – Meet in public during can both have a little time to get used to it’s worth trying to do what you can to less painful. You might find it helps to: the day, tell your friends where you’re how that makes you feel. explain it to them as early as possible. • Explain things step-by-step, so going to be, arrange to contact But however you decide to talk about It’ll help them make sense of the that your kids can come to terms with someone afterwards and leave at any cancer with your new partner, it can changes they notice, too. your diagnosis and treatment gradually time if you feel uncomfortable help to: The good news is that children want to One more thing: think very carefully • Pick a time when you are both relaxed • Be honest, they’ll figure out pretty learn, and they also don’t have the same before you start sexting. It’s illegal, first quickly if you’re holding things back • Think about what you want to fear of the word cancer that adults do. of all, and it can also put you in a really Encourage questions say beforehand If you explain things in a simple way, • and ask vulnerable position. Once you’ve shared • Be honest about how you’re feeling they’ll get it. And if you’re open and your children to be open about how private images, you can’t get them back and encourage your partner to be honest with them, chances are they’ll be they’re feeling and have no control over them. honest too open and honest with you. • Reassure your children that So protect yourself and, if you’ve been And, if you’re feeling worried, turn to this is nobody’s fault and that cancer sent explicit images by someone you’re page 120 for a little more advice on telling isn’t contagious in touch with and feel uncomfortable, people about your cancer diagnosis.

115 116 • Tell them you love them, because It can help to try and spend as much there aren’t many things that provide time with them as you can, or to ask more comfort than that friends and relatives to spend extra TALKING IS time with them if you’re not around. • Ask them to repeat what you’ve Simple things like playing with them, said - so you can check they’ve going for a bike ride or walking to the understood it park can make both of you feel better. TOUGH There are books you can use to explain Finding ways for them to help out and what’s happening, so ask your youth get involved in your treatment can be a support coordinator if you’d like to use good idea too. OK, so all through this book we’ve one of those. And there might be play specialists at your hospital who work And don’t be afraid to let them know if been encouraging you to open up with children and can help with the there are times when you could really do conversation too. with a hug. Your children can be a huge about your feelings. But what if you source of support – and can usually put WHAT TO EXPECT a smile on your face – if times get tough. struggle with that? Children react in all sorts of ways. They might become clingy, insecure or withdrawn, or they might start playing You might already have seen videos • Being scared that you will upset up to get more attention. You might find online or looked at leaflets that feature people can mean you hold things back they go through stages of acting in all of families sat together after a cancer when they really want to know the these ways. diagnosis, with everyone calmly truth, so being honest is important – discussing their feelings like it’s the most even if it’s tough natural thing in the world. The trouble is, TIPS FOR TALKING real life often isn’t like that. It’s totally up to you what you talk about, Lots of people like to keep themselves to how you talk about it and who you talk themselves, and that doesn’t suddenly to, but these ideas might help to make change after a cancer diagnosis. You’re conversations a bit easier: still the same person you always were. • People might avoid talking about But talking really can help, and going cancer because they’re not sure if you through this alone usually makes it want to, so it’s a good idea to let them harder. The trick is to find a way to talk know if it’s OK or if you don’t want to that works for you. talk right now • Remember how we suggested that For starters, try to remember: you plan what you want to say before • There’s no right or wrong way to you talk to doctors, and maybe write it WITH YOUR talk about cancer down? That can be a good idea when • Finding the right person to talk to you’re talking to friends and family can make a big difference (see page too. (You could even write a letter 80 for more about this) instead of talking, so people have time to process your news and think about CHILDREN their response.) 117 118 • It can help to start by explaining what Or you could always: you’d like to talk about and if there’s • Send an email, letter, text or anything you’d rather avoid instant message ‘YOU’VE GOT • There might be silences and people • Take photos, draw pictures or send might get upset. That’s OK, so try songs that sum up how you’re feeling not to let it freak you out. Take a few WHAT?!’ breaths, have a cup of tea and see if • Leave a sign on your bedroom door you feel ready to keep chatting. If not, • Write a blog to let everyone know don’t force it. Take a break and try what’s on your mind again later CHOOSING • Keep a diary, to get your thoughts • Some people prefer to talk while out even if you don’t want to share they’re doing something else, so that them with anyone else all the attention isn’t on them. If that WHO TO TELL sounds like you, think about times that If your family is really struggling might work – like when you’re in the to talk, it can also help to speak to car, out shopping or watching TV. Or if someone whose job it is to help people Talking to your family and close you prefer to talk somewhere private communicate. Counsellors, social and quiet, choose somewhere you feel workers, doctors and nurses will all friends about cancer is tricky really comfortable be able to give you lots of practical ideas and clinical psychologists are enough, but what do you do about • Try not to worry too much beforehand experts in helping people have tricky – conversations often seem much worse conversations, so don’t be afraid to ask telling people you know less well in your head than they actually turn out for help. Even if it feels weird at first, to be. Most of the time, talking about involving someone who’s not so close to – like your classmates, teachers or this stuff makes everyone feel better the situation can help everyone relax. people you work with? IF TALKING IS TOO TOUGH If you really don’t feel able to talk, don’t worry – there are plenty of other ways to After you’re diagnosed with cancer, weigh up the pros and cons for everyone let people know how you’re feeling. it’s normal to start asking yourself you’re wondering about telling. We’ve included some cards at the end questions about your relationships. YOU MIGHT DECIDE TO TALK Questions like, ‘How will people react of this book that might come in handy. TO PEOPLE BECAUSE… They’re designed to make it easy for you if they find out?’, ‘Do I want that person • Keeping cancer to yourself can be to let people know what’s on your mind. to know?’ and ‘Am I really going to stressful and exhausting, whereas All you need to do is leave them where keep this from people?’ being honest can be a big relief people will find them or drop them in The truth is that your treatment might the post. make it hard not to say something. • Telling your teachers or boss can make If your appearance changes, for example, it easier to get extra support at school, avoiding awkward questions can be tough. work, college or uni, like having time off for appointments, changing your But whatever happens, who you decide work hours or avoiding things like to tell is your choice – and it can help to heavy lifting or using machinery

119 120 • You might not feel able to keep doing It’s your cancer, and your call. There your normal job safely are some questions it can help to think through before telling people, though. • You might feel tired or struggle SCHOOL AND Questions like: to concentrate because of your treatment, and explaining why can • How much information are you be more straightforward than making happy to share? You could write STUDYING something up this down beforehand Or you might decide not to talk • What do you want to say? It can to people because: help to practise on your own first What happens with school, • You’re worried about getting a weird • How do you feel about people reaction and being treated differently passing the news on? Let them college or uni during treatment? • You haven’t got the energy to know if you don’t want it to go any Here’s what you need to know keep repeating the same story and further (but bear in mind that most answering the same questions people will want to tell at least one about cancer and education. other person, usually because they’re • You don’t feel comfortable discussing feeling worried or upset and want to your health, especially if your cancer talk things through) If you’re a full-time student, your doctors LETTING PEOPLE KNOW is affecting a part of your body you and nurses might recommend you take Your school, college or uni can only wouldn’t normally talk about, like • Are you happy to answer some time off school, college or uni to provide support if they know what’s your testicles or breasts questions? Some people might have help your recovery. This can sound like going on. So while it’s up to you who you a lot. Others might feel a bit shocked • For as long as possible, you want to keep tell, it’s usually a good idea to let your and so stay silent. Either way, it can a great idea at first, but can quickly school, work, college or uni as a place tutors know about your diagnosis as help to let people know what you’re feel quite weird. There’s only so much where you’re not defined by cancer soon as possible. Schools can help you OK for them to ask daytime TV a person can take. keep up. Colleges often have support • You feel like it’s nobody else’s business The good news, though, is that there • Is there anything people can do services and can get funding to help you. are plenty of options to prevent you However you feel is completely fine and to help? It’s often the first question Unis can make adjustments or postpone from losing touch with your studies totally understandable. It’s your body, people ask when they find out, so have your studies. And you might be able completely – and plenty of ways to make your life and your decision who to tell a think about any practical support to get help via the Disabled Students’ your return to school less stressful, too. (though it is worth bearing in mind you need and things like how often Allowance, too. But all of these things that if you don’t tell your employer, you’d like people to be in touch STAYING IN TOUCH can take time to get sorted. Cancer they don’t have an obligation to make It can be a tricky conversation, but It can help to try and keep up with some charities can often help with information reasonable adjustments for you at it’s often much more straightforward work even if you’re not able to stay at for teachers, lecturers and friends. work – you can read more about that than you expect. It’s also not unusual school, college or uni full-time. Doing on page 125) LEARNING AT HOSPITAL OR HOME for relationships to grow stronger things you’re used to doing can help you If you’re in compulsory education (which HOW TO TELL PEOPLE after people find out about a cancer feel more positive, and so can keeping means you’re 16 or under) and staying in diagnosis. But don’t feel any pressure to in touch with your teachers, tutors and This one is up to you too. You might want a children’s cancer ward or teenage and tell anyone you don’t want to. people in your classes. Chat to your to tell people separately or in a group. young adult unit, you might be able to You might want to go for a walk or find tutors about what is possible for you to study while you’re there. Lots of these a quiet classroom or meeting room. You We’ve said it before and we’ll say it do, but try to avoid taking too much on You’re... The... Boss. facilities have education departments might want to talk about everything at again: and stressing yourself out. that employ teachers. once or keep your explanation short.

121 122 And if you’re 16 or under and not in Visit www.teenagecancertrust.org and KEEPING UP hospital but not well enough to go to search ‘education’. If you struggle to keep up with your school, you might be entitled to home work at first, don’t worry. You might IN tuition or be able to study online. And you can arrange for a member have missed a lot. Your treatment GET You can ask your social worker or of the Teenage Cancer Trust education might have affected your ability youth support coordinator for more team to visit your school and talk to concentrate. You might just feel information about this, or you could about what cancer is and how treatment exhausted. However you feel, your TOUCH get in touch with your local authority. works. They’ll be able to answer any teachers will understand – and your WHO TO TALK TO questions people might have about classes will get easier as time passes. If you’ve got concerns about your studies Top tip: Staying in touch with cancer, too. You can find out more and book a session by visiting or you’re struggling to keep up, try not to your school, college or uni can And remember to let people know if and keep it to yourself. It might help to talk to: help life seem more normal – even www.teenagecancertrust.org you’re going to miss classes because of searching for ‘education sessions’. if you’re simply emailing tutors or appointments. You could: • Your teachers, who are there to support meeting up with friends. YOUR FIRST DAY BACK • Ask a friend to take notes for you you as well as teach you Like a lot of things, your first day back • Get the teacher to email you with • Your school, college or university READY TO GO BACK? usually seems a lot worse in your head counsellor or pastoral support team, any work you miss Once you’re feeling well enough to than it turns out to be. Sure, you might which might sound like a scary option start studying again, chat to your find that some people stare at you •Talk to your teacher about which but really isn’t – these are people who doctors and nurses. They’ll help you or seem a bit awkward, especially if work is most important, so you can are trained to listen and help you deal work out what’s possible and give you you look different now. But you’ll also focus on that with problems advice on what to expect. probably find that lots of people are APPLYING FOR SUPPORT • Your parents, who can talk to teachers really happy to have you back. It’s also a good idea to visit your school, If you’ve got exams coming up, you if you’d rather not and might be able to college or uni, so you can let your It’s a good idea to arrange to meet a might be able to apply for various ‘access help you get extra support teachers know how you’re doing and friend beforehand, because arriving with arrangements’. This can cover things • The people taking care of you, including how they can help. If you don’t want to someone else might help you feel a bit like being given extra time or having doctors, nurses, social workers and your do this yourself, you can always ask your less self-conscious. someone to write for you during an exam. youth support coordinator, who might parents or a friend to go with you - or to have some helpful ideas on how to cope go instead. And if you look different after treatment Similarly, you might be able to get with studying and are worried about how people might ‘special consideration’. That basically HELPING PEOPLE UNDERSTAND react, you could arrange to meet up with means your individual circumstances are • Your friends, who might be able to You might also like to ask your teachers a few people before you go back. Try to taken into account when your paper is help you keep up, or might just be the perfect people to open up to about to talk to your class before you go remember, too, that everyone will get being marked. back, so people have an idea of how used to how you look now very quickly. your feelings Lots of people apply for access your treatment has gone. It can help USEFUL CONTACTS you avoid having to answer the same If anyone does make nasty comments, arrangements and special consideration For more support and advice about questions a thousand times. try not to react. As well as being every year, for all kinds of reasons. It can anything to do with school, you can get idiots, they’re probably just nervous or help to take some of the pressure off in touch with: We’ve developed a wide range of confused about cancer. And if it carries when you’ve had a difficult experience. lesson plans, quizzes and games your on, let someone know – dealing with It’s not a blag and it doesn’t make your • Our experts, by emailing teacher can use to help people learn bullies isn’t something you need to deal result worth any less – it’s just recognition [email protected] about cancer. with on your own. that you’ve not been able to study as • CLIC Sargent - www.clicsargent.org.uk much as you’d normally be able to. • Macmillan – www.macmillan.org.uk

123 124 But whatever your situation, wait until • Be honest if you’re struggling you feel ready to go back to work, then - No one will judge you, and your ALL ABOUT talk to your boss, your doctors or your boss might be obliged to make clinical nurse specialist about what’s reasonable adjustments to make possible, and ease yourself back in things easier for you gently. Your social worker and youth • Go easy on yourself - It takes WORK support coordinator can help you talk time to recover from cancer and things through too. cancer treatment, so listen to your Top tip: Thinking of going back to body and don’t stress if you can’t do Keeping up at work, returning work (or school)? You can always everything straightaway contact Teenage Cancer Trust for after treatment or looking for a The people you work with will probably more support and advice. Email be curious about your treatment and [email protected] new job can be a challenge... but how you’re feeling, so it’s worth thinking and we’ll get right back to you. there’s plenty you can do to make about how much you want to let TIPS FOR GOING BACK them know. You might want to talk to things easier. You might find you get tired more everyone together, or you could speak easily at first or sometimes struggle to to a few people and ask them to let concentrate. Try not to worry – that’s others know. DURING TREATMENT Don’t rush into anything! very common. It can help to: Legally you don’t have to tell your If you’re reading this section because We’ve also included some cards at the • Make a return-to-work plan employer if you’ve been diagnosed you’ve had a cancer diagnosis and are end of this book that might come in with cancer. But if you don’t tell them, thinking of quitting your job – don’t do - This gives you and your boss the handy. They’re there for any times when chance to agree what you’re able to they don’t have any obligation to make anything rash! Take some time, speak you don’t feel like talking but don’t want do, which parts of your role you should reasonable adjustments to help you. to people close to you and work out people to feel ignored. focus on, any changes that are needed, whether that’s really what you want any appointments you’ll need time off Keep your eyes open! Reasonable adjustments can include to do. things like giving you time off to go for and so on. Your return-to-work plan Most bosses and companies are brilliant to hospital or doctor’s appointments, READY TO GO BACK? should be flexible, and it’s a good idea at adapting to make your life easier – giving you extra breaks and letting you Going back to work if you’ve taken time to review it regularly but some aren’t. So if you think you’re off for cancer treatment can feel like a not being treated fairly or it feels like return to work gradually. These are all • Go back part time - You could talk big step forward. But it’s important not a fight to get adjustments made, try covered under the 2010 Equality Act to your boss about working fewer not to stay silent. You could speak to (Disability Discrimination Act in Northern to rush it – and not to expect too much days or shorter shifts, or maybe about colleagues, family or friends, and the Ireland). This classifies everyone with of yourself, too soon. working from home cancer as disabled (even though you Citizens Advice Bureau can help too: If you’re going back to your old job, your might not think of yourself as disabled). • Adjust your routine - Ask if you we’ve included their details in the Useful employer has a duty to make changes can arrange your day around the times contacts section on page 178. Once you’ve told your employer about that could help you (as long as that’s you feel at your best your diagnosis, it’s illegal for them reasonable and you’ve told them about • Take your breaks - Make sure you to discriminate against you. So think your diagnosis). And if you’re looking don’t miss them – and relax when carefully if you’re not planning on letting for a new role, there’s no reason that you have them them know. And for ideas about how to cancer should stop you landing the job tell your boss and colleagues about your you want. diagnosis, turn to page 121.

125 126 Looking for work So if you’re asked if you’re disabled, you Searching for a new job is tricky at the should say yes, even if it doesn’t feel best of times. After you’ve had cancer quite right. GETTING it can seem even trickier. But if you’re qualified and physically able to do a job, Look out for the there’s no reason that cancer should be ‘positive about a barrier. disabled people’ AWAY FROM symbol on job ads, In fact, there are very few reasons that too. If you meet the an employer can question your health in basic conditions for these jobs, you’ll IT ALL an interview. It’s OK for employers to ask definitely be asked in for an interview. about your health to check if you’re able to complete a task that’s fundamental to Top tip: the role, or to make sure the recruitment My Plus Students Club offers Ready for a break? Cancer doesn’t process isn’t discriminating against job-hunting tips, legal advice anyone, or to help them take ‘positive and info about companies who have to stop you dreaming of action’ (which might mean improving are committed to employing their recruitment of people with people with disabilities. Visit sun, sea and sand. You just need disabilities, for instance). myplusstudentsclub.com to think about a few more things But it’s up to you how much you tell Changing career before you go. any potential employer. Try and resist A lot of people decide to try any temptation to be dishonest, though something different after going through cancer treatment. It can change your – false answers have a habit of coming Let’s start with the good news: this and follow these ten handy tips if you perspective and make you feel like the back to haunt you in the future. section isn’t here to tell you that there’s are thinking about travelling: path you were on isn’t right for you no way you can go on holiday before, And remember that, while you might anymore. If you’re feeling like that, BE REALISTIC after or even during cancer treatment. not think of yourself as disabled, the make sure you take time to think This one isn’t always easy, but it makes Definitely not. A change of scene can do Equality Act and the Discrimination about your options. sense. If you find yourself getting tired wonders for you and your family. Act consider everyone with cancer to easily at the moment and can’t walk This could be the start of something be disabled. What is important, though, is that you long distances, now probably isn’t the brilliant, but there’s no rush. Take time chat to your medical team before going time to book that trip to hike the Inca to think about what you really want to anywhere. Having cancer might affect Trail in Peru. Go easy on yourself and be do. Chat to your friends and family. And where you can go, when you can go and honest about what you can and can’t then start shaping your future – exactly what you can do, and your doctors and do. Symptoms like fatigue, sickness, how you want it to be. nurses will be able to help you make the diarrhoea, increased risk of infection best choices. because of your treatment and increased sensitivity to the sun can all affect your So don’t rush off anywhere just yet, travels, so take them into account when but don’t throw away those holiday you’re planning your trip. brochures either. Just allow a bit more time to make any special arrangements,

127 128 PLAN YOUR MEDICATION SPEAK TO YOUR If you’ll be on medication while you’re TRAVEL COMPANY TALK TO YOUR away, take enough for the whole trip – Some travel companies and airlines have plus a few extras in case flights or trains medical officers who will be able to give are delayed or you lose some. If you’re you advice about your journey. They’ll be DOCTORS going away for less than three months, able to organise things to make your trip your doctor will be able to write extra easier too – like early plane boarding, prescriptions for you. (If you’re away the right meals for you and a wheelchair for longer than that you’ll need to get if you need one. drugs overseas.) Some countries limit THEY’LL GET AN EHIC CARD the amount of certain drugs you can If you’re travelling anywhere in the EU, take in, so if you’re worried contact their or to Norway, Lichtenstein, Iceland or embassy in the UK (you can find a full Switzerland, apply for a European Health list at www.gov.uk). It’s also a good idea Insurance (EHIC) card online. Having one to get a letter from your doctor listing all of these means you can get healthcare the drugs that you’re taking. And make for free or at a reduced cost in those sure you carry any drugs, syringes and countries. And don’t get duped into medical pumps in your hand luggage so paying for one – lots of websites charge you can get to them easily. YOU MAKE A for these cards, but you can get one for MAKE SURE YOU’RE FIT TO FLY free at www.ehic.org.uk You can usually fly without problems, PROTECT YOURSELF IN THE SUN but there might be times when changes Some cancer treatments can make your in pressure or the amount of oxygen in skin more sensitive to sunburn – and it’s the cabin could be issues. So check with good advice anyway. So cover up, pop PLAN your doctor and airline before flying on a hat and slap on suncream that’s anywhere, and in particular if: Factor 30 or higher and remember to • You’ve recently had surgery CHECK OUT INSURANCE re-apply regularly. • You’ve had a bone marrow or stem cell Getting travel insurance can be more ENJOY YOURSELF transplant in the past year difficult when you have cancer and can We know it can seem like a lot of faff to take longer to arrange. That’s because • You’ve got low levels of platelets in get all of these things sorted, but once ASK ABOUT VACCINATIONS insurers have to cover the cost if you get your blood you’re there, make the most of it. So To travel to some countries you need ill while you’re away or need to cancel • You get breathless easily from the moment you arrive, it’s to get vaccinations before you leave your trip. You’ll usually need to give the time to relaaaaaaxxxx… insurance company a letter from your (as if you’ve not had enough injections PACK YOUR MEDICAL RECORDS doctor before they make a decision. And already…) But taking certain cancer They’ll come in very handy if you need make sure you’re totally honest when you drugs can weaken your immune system, any treatment while you’re away. apply – otherwise your insurance policy which means you can’t have the might not be valid. Turn to page 178 for vaccinations. Check with your doctor useful contacts. to see what’s possible for you.

129 130 DEALING WITH DISCRIMINATION the problem, speak to your social worker You have important rights under the or youth support coordinator, or contact LEGAL STUFF, Equality Act to make sure you aren’t Citizens Advice Bureau (see over). treated differently because you have TRAVEL INSURANCE cancer. They mean that: Our travel section on page 128 lists a MONEY STUFF • You can negotiate for reasonable few things to think about if you want to changes at work – which might get away from it all for a while – and include flexible working hours or one of those things is travel insurance. We’re not lawyers and we’re not time off for treatment It can be tricky to get insurance during • You have legal protection if you feel or after cancer treatment, but it is financial advisers, but we do know you’re being treated unfairly at work possible. So read our travel tips on page 128 and then turn to page 178 for useful where you can get answers if you’ve • You shouldn’t be treated unfairly at contacts who might be able to help. school – your school should work with got the law or money on your mind. you and your family to consider what’s MAKING A WILL best for your education This is probably something you’ve not given much thought to before now. • You shouldn’t be treated differently by But if you’re over 18, writing a Will is There are a whole lot of legal and money MONEY MATTERS landlords (who can’t refuse to let you a a really good idea (whether you have issues that can come up during cancer The NHS will cover all of your treatment property because you have cancer) cancer or not). treatment. Maybe you think your boss costs (unless you’re receiving private could be discriminating against you. care), but cancer can still make life If you feel you’re being discriminated You don’t need to have millions stashed Maybe you want to know more about difficult financially. You or your parents against, start by talking to your boss, away in a secret bank account – a Will is benefits or about any support that exists might be earning less if you’ve had to teachers, landlord or whoever about simply a way to explain what you want for your parents. Maybe you’d like to find stop working or reduce your hours. how you’re feeling. If that doesn’t sort to happen after your death. out about help with travel costs. You might need to pay for travel to appointments. Your parents might Issues like this can seem like a real pain need to pay for accommodation to stay when you’re trying to focus on your nearby if you’re away from home. And health. But the good news is that plenty costs like heating can increase too if of organisations can make it easier to find you’re spending more time indoors or the answers and support your needs. feeling the cold more. GET THE Top tip: If you’ve got legal or If you and your family find yourselves money questions, speak to your struggling with the financial side of social worker or youth support things, there is a lot of help available coordinator first. They’ll either – like benefits, grants and tax credits. know the answers or be able to There are also plenty of organisations point you in the right direction. that are very experienced at supporting RIGHT people in your situation – we’ve listed a few in the useful organisations section (page 133) - but they can only help if you talk to them. ADVICE 131 132 It can cover your possessions, who will CLIC Sargent offers lots of useful look after your children (if you have financial information for parents, including any) and any details about your funeral. benefits advice (and advice on recent NOTES You need to make sure it’s legally valid, changes to the benefits system), tips for and once you’ve done that you can be living on less money than you’re used to confident that things will happen the and ideas for budgeting and dealing with Got questions about school, money, relationships or anything else in way you want them to. debt safely. Visit: www.clicsargent.org.uk/ this section? Fancy playing noughts and crosses while you wait for an financialsupport or contact the charity’s appointment? Be our guest. You can find information about what’s welfare advice service by calling involved at www.gov.uk/make-will 0800 915 4439 or emailing and by searching for ‘wills’ at [email protected] www.adviceguide.org.uk Macmillan employs benefits advisers USEFUL ORGANISATIONS who can help you figure out if you’re Cancer Research UK has an area of entitled to benefits, tax credits, one-off its website – www.cancerresearchuk.org grants or loans. You can speak to them – dedicated to the latest financial info. by calling the Macmillan support line You can find it in the ‘Coping practically’ on 0808 808 00 00 or by searching section of the site. It includes details for your local Macmillan support group about applying for benefits you may at www.macmillan.org.uk (look for be entitled to. the ‘In your area’ section of the site). The website also has a handy tool Citizens Advice with guidance on things like managing offers lots of information on financial your budget, paying bills, borrowing issues, including benefits, dealing money and writing a Will. And you can with debt and borrowing money. download various useful resources – It’s also a great resource to help you including a very comprehensive booklet understand more about your rights called ‘Help with the cost of cancer’. and about discrimination. www.gov.uk Head to www.adviceguide.org.uk to The government’s own website provides search for answers to your questions. a lot of clearly written information on You can also talk to advisers at its offices subjects like benefits, employment, across the country. money and tax. It’s well worth looking at for general advice.

133 134 NOTES BEYOND CANCER BEYOND CANCER

135 BEYOND CANCER ‘NORMAL’ But what happens now? But whathappensnow? Congratulations, that’samazingnews. wanted tohearforsolong–‘remission’. So you’veheardtheword adjust to your new normal. looking forward to it,ittakes timeto And nomatter how muchyou’ve been ordinary life after cancer treatment. ordinary aboutgoingbackto your moment, don’tworry. There’s nothing If theworld seemsstrange at the you thinkaboutnow? weird andeven slightly scary. What do anymore, andeverything canfeel abit don’t have to thinkaboutthose things But finallytheday arrives when you goes withacancer diagnosis. and sideeffects and everything elsethat and hospitalstests andmore tests cancer –andabout doctors andnurses to spendalotoftimethinkingabout getting treated for cancer, you tend When you’re livingwithcancer and BACK TO BACK TO GETTING long-term goalscanhelptoo. advice you trust. Writing down shortor workers, religious leaders: anyone whose family, friends,careers advisers, social different options. Itcanhelp to talk to Now canbeagoodtimeto look into than rebuilding it. about redefining your life now, rather to make choices. Itmight helpto think So give yourself timeanddon’t rush you want –butitcanbeconfusing too. because you canbeginagainhowever normal isnow. That canbeexciting – In fact, itcanbehard to work outwhat when you get ridofthedisease. getting over cancer doesn’thappen come through amassive challenge. But You andthepeoplecloseto you have REDEFINING YOUR PLANS REDEFINING YOUR PLANS WHAT IS ‘NORMAL’ NOW? 136 NOW’S The most important thing is to do • You might feel like your Some people even struggle to make whatever feels right to you. THE TIME TO relationships with the people close plans or to enjoy life fully because to you have changed they’re worried cancer might come back. You might want to pick up where • You might feel more mature and stronger you left off with some goals, while THINK The truth is, it’s not an easy one to others might need a rethink… ABOUT YOUR • You might value different things answer. You might find your doctors • If cancer has affected your body, your • People might treat you differently, even and nurses are reluctant to say that energy levels or your emotional state, SHORT LONGTERM if you’re no longer living with cancer your cancer is ‘cured’ because cancers you might not feel able to follow the can come back in the same place or It can be frustrating if people act plans you used to have. This can be somewhere different. This is usually strangely or single you out, but try to hard to adjust to, but don’t rush to plot GOALS because treatment didn’t destroy all of remember that it won’t last. Doing the out a new direction. The time will come the cancer cells in your body. things you used to do – like going to when you feel ready to think about school or work or just hanging out with The good news is that, for most different opportunities happened and move on. Or maybe you’re swinging between feeling friends – can help people get used to cancers, the more time passes, the less • Maybe you’re thinking about aiming positively and negatively about what having you around again. And meeting likely it is that cancer will come back. towards a totally new career. You might you’ve gone through. new people can be a good idea too, if But if you are worried, don’t try and want to work in healthcare after seeing you feel up to it. hide your fears. Everyone has bad days, the amazing work your care team Everyone’s experience is different. so try to accept your feelings and work does during your cancer treatment. But if you do find yourself wanting to It can also be difficult getting used to not through them. (or maybe you never want to set foot talk about issues like these, try your being the centre of attention anymore. in a hospital again). Whatever you’re friends and family. There’s a chance That’s also natural. It’s a confusing time, People like clinical psychologists and thinking, speaking to a careers adviser you’ll even find they’ve been asking so don’t rush to figure out who you are. counsellors aren’t just there for you can help you figure things out themselves similar questions. Identity constantly changes, and after during treatment; it can really help to living through cancer it’s not unusual to talk to them afterwards, too. They’re • Maybe you’ve got no idea what you Online forums can be helpful too, as feel a bit lost for a while. able to suggest ways of managing want to do. That’s nothing to worry they can put in you in touch with people any anxieties you have, which can be about. This is a tough time, and no one your age who have been through cancer. Finally, you might find it helps not to especially handy if your worries about will blame you for feeling confused. Remember that everyone’s experience set your expectations too high. If you cancer coming back are getting in the (And plenty of people live a happy life is different, though (and remember that go back to school or work expecting way of you living your life. without ever really knowing what they not everything you read online is true – everything to be just like it used to be, want to do.) turn to page 16 for more on that) you might be disappointed. But if you There’s no doubt that living with prepare yourself for things to take time uncertainty can be tough, but it does LOOKING FOR MEANING WHO AM I? or to feel weird for a bit, it might make usually get easier. And while you’ll never Cancer is a life-changer, so it’s not That’s a pretty tricky question at the the experience easier. completely forget having cancer, it’s unusual to think about the impact it’s had best of times, but cancer can make it likely you will think about it less and less WILL CANCER COME BACK? on you. A lot of people want to know why a whole lot trickier. There are various as time goes by. it happened to them, what it means and reasons you might not feel quite like you That’s usually one of the first questions what they can learn from it. used to: people ask when they find out their Teenage Cancer Trust organises regular cancer is in remission, and it can be a events that bring young people together You might feel it’s left you feeling • The way you look and the way you difficult one to cope with. and tackle the topics that are important. stronger and able to enjoy life more. see yourself might have changed To find out about upcoming events email Perhaps you prefer just to accept that it’s (which can hit your confidence and self-esteem) [email protected]

137 138 It’s a good time to experiment with who And try not to worry. Even if it feels like does what, and to be honest about how a lot is changing now, you’ll soon get a RELATIONSHIPS you’re feeling. Try and find out what better idea of what you care about and works best for everyone and how best what kind of people you want to hang to support each other. Take the time to out with. Just give yourself a bit of space AFTER CANCER listen to the people around you (that’s and time. a good idea as you work through all of BOYFRIENDS AND GIRLFRIENDS your relationships). You’ll figure what’s The section on page 112 gives a lot of normal now soon enough. You know that phrase ‘getting back advice on changes that might happen to FRIENDS relationships during cancer treatment, to normal’? Life often isn’t like that. You might have stayed close to your but what about afterwards? friends right through your cancer You go through things that change treatment, so they know what’s Even if you’ve been with someone you, and going back to how life was happened to you, you know what throughout your treatment, you might they’ve been up to, and all of you fit still find that things feel slightly odd. before doesn’t seem right or realistic. right back together now you can spend Don’t worry – that happens. Just like more time with them. with your family and friends, it’s all about readjustment. You might find that’s how you feel Your mum and dad might have given But sometimes it’s not that You should know each other pretty well after your cancer treatment. The people you more attention than your brothers straightforward. Maybe you feel you’ve by now, so talk about anything that close to you might feel the same way. and sisters. Your brothers and sisters missed out on things or can’t relate to feels strange. It might be that neither And, as a result, your relationships might have needed to do more around your friends like you used to. Maybe of you have really spent much time might start to change. the house. And so on and so on. you feel like you’ve grown up faster than them or they’ve left you behind. thinking about what’s going to happen. FAMILY Now your treatment is over, figuring Or maybe their problems and worries Even if you’ve talked about the future During your treatment, you and your out how things are going to be from seem a bit trivial now, so you find you’re before, the situation can seem different family will have adjusted to your new now on can be complicated. It can leave less interested in hearing about them. when that future actually arrives – so reality. You might have needed more you feeling like you’re dancing around it’s important for both of you to work support than you’re used to. each other as you try and get your If some friendships have become through what you want now. independence back and everyone tries difficult, you might find things gradually When you’re feeling ready, it could to readjust. feel less strained once your treatment is over. Spending more time with people help to talk through: LISTEN and doing the things you’ve always done • Anything new you want to do in can help everyone feel more comfortable. the future • Anything you’re confused about But it might be that some friendships TO or want help with THE don’t quite click anymore. That happens too – cancer or no cancer. • How you feel about your PEOPLE AROUND relationship now If you find that you’re interested in • How you’d like your relationship new things, you might want to try and to develop meet new, like-minded people – maybe by joining a local club or team or by connecting with people online. 139 140 That might sound pretty scary, but it • Focus on anything positive that’s come can be exciting too. After all, this is your out of your treatment – maybe you feel chance to start thinking about all of the stronger or you appreciate people more LATE SIDE things you might have been too nervous • Talk to friends, family or a professional or distracted to think about before. – like a psychologist or a counsellor – if MEETING SOMEONE NEW you’ve got body issues that are weighing EFFECTS Trying to start a new relationship is on your mind often daunting. If cancer has affected If your treatment has affected your the way you look or given your fertility, you might be worried about confidence or self-esteem a knock, telling people about that. But there’s no There is a chance you could it can seem even harder. rush. If you meet someone and the time still get side effects after your feels right, explain the situation and talk But people will still feel attracted to you through what it means – and remember after you’ve had cancer. And while you treatment is finished. This doesn’t that you can always talk to your doctors never know when you might bump into about fertility treatments too. happen to everyone and it doesn’t Mr or Mrs Right, if you do want to meet someone new, it might help to: ‘GETTING OVER IT’ mean your cancer is back – but it • Join local groups or clubs, especially You might find some people struggle to if you’ve not hung out with many understand why you can’t just go back can be seriously frustrating and new people lately to being exactly how you were before. Phrases like ‘get over it’ and ‘move on’ pretty scary. • Join an online dating service (but go are about as useful as an inflatable to page 115 first to find out more about dartboard, but that doesn’t mean you keeping yourself safe) won’t hear them. You might hear these called ‘late this section, we’ll use the phrase • Talk to other people who’ve had effects’, ‘late side effects’ or ‘long- late side effects to cover both types cancer about how they met people If you feel like people are pushing you, term side effects’. They’re actually - because what we’re really talking after treatment try to explain that even though your slightly different. about here are symptoms that carry treatment might be over, you still need on after treatment: regardless of when to deal with what’s happened – in your Long-term side effects start during they started. own way. or shortly after treatment and don’t go away within six months of treatment Remember: not everyone gets late And if you notice you’re finding life ending. They might eventually go away, side effects! OIN after cancer particularly challenging, it’s or they might be permanent. WHAT’S GOING ON? important to speak to someone about Late side effects come about because A LOCAL that. It could be someone close to you, Late effects/late side effects are a some cancer treatments, including a doctor or nurse, your youth support delayed response to treatment, and surgery, radiation therapy, bone marrow GROUP coordinator or a clinical psychologist or you can get these months or even OR transplants and some types of chemo, counsellor. Asking for help doesn’t mean years after treatment. can do damage to healthy cells as you’ve done anything wrong. The time Whichever ones you have and whatever well as cancerous ones. And this can after treatment can be one of the most CLUB people call them, they can be really cause problems that take months or challenging to get used to. annoying and seem completely unfair. In sometimes years to appear.

141 142 WHAT ARE WE TALKING ABOUT? • Talk to your doctor or nurse about Potential late side effects vary whether you’re likely to have late depending on what kind of cancer you side effects IF CANCER had, where it was, how it was treated • Go to your follow-up appointments and how old you were. Your doctor or and tell your doctors about any nurse will let you know which effects problems you’re having (if any) have been associated with COMES BACK your cancer. And at the end of your • Keep a detailed record of your cancer treatment, you should also be given a treatments and your care plan (and treatment summary that explains any if you haven’t got a care plan, go and Sometimes, even if it’s been a long potential late side effects and lets you ask your doctors and nurses about it!) know what to look out for. (If you’re not This can help doctors you meet in the time since you had treatment, given one of these, ask about it.) You’ll future who weren’t involved in your have regular check-ups, too, to increase cancer treatment cancer can come back – either the chances of picking things up early. • Look after yourself – a healthy lifestyle where you had it before or WHAT CAN YOU DO? (eating well, exercising, not smoking Late side effects can be really hard to and so on) can reduce the impact of somewhere else. Getting that deal with and make you feel like you’ll late side effects never be free of cancer. But to help news can be devastating – a real If you do experience late side effects, identify and deal with them as early it might help to go back to our tips ‘why me?’ moment. as possible, it’s important to: for coping with difficult emotions on page 80. All of that advice still stands. It’s one of the hardest truths about original cancer or somewhere nearby. cancer: there is a chance that it could Sometimes cells have spread to another come back. For most people, every part of your body and form a tumour day that passes lowers the risk of that there. Sometimes cancer treatments happening. But even if your doctor is increase the risk of getting cancer TELL YOUR 95% certain that your cancer has gone again in the future. And sometimes for good, it can be really difficult to stop cancer cells mutate and become thinking about that 5%. resistant to treatment.

WHY DOES CANCER COME BACK? If you are diagnosed with cancer again, DOCTORS There are several reasons that it can your doctors and nurses will talk through ANY happen – but it’s never because of exactly what the situation is and what anything you’ve done. treatment you might need. Cancer ABOUT treatments are advancing all the time Sometimes cancer treatment doesn’t get and might have changed since your rid of all of the cancer cells, and the ones first diagnosis. So don’t be afraid to ask that were left behind form a new tumour questions or to be totally honest about – either in the same place as your whatever is on your mind.

143 144 DEALING WITH FEAR You might find yourself experiencing Even if you’re feeling well and your a lot of the same emotions you felt doctor has told you that your cancer first time around – but perhaps more WHEN is in remission (which means you’re intensely. We’re talking: no longer showing any signs or • Shock - Which is only natural, especially symptoms of cancer), the knowledge if you’ve been feeling well and like you’ve TREATMENT that it could come back can be really moved on hard to deal with. • Anger - That’s only natural, too. There If you can’t shake the worry that cancer are no two ways around it: this is not fair IS UNLIKELY TO could return and it stops you from doing things, it might help to speak to other • Sadness - You might be upset at people who have had cancer about how the thought of how your life could change again CURE CANCER they deal with that uncertainty. Or you could talk to a professional, like a clinical • Fear - You might be scared about psychologist or counsellor, who will help having to go through more treatment you find ways to deal with your fears Sometimes cancer treatment and anxieties. • Guilty - You might be worried about putting pressure on people again, but try doesn’t work. We’d love that not IF YOUR CANCER COMES BACK to remember that this definitely isn’t your Hearing a doctor tell you that fault. Your family and friends know that to be true. No doubt you would your cancer is back can feel totally and will only want you to be well overwhelming, like everything you’ve too. But sometimes doctors do Facing up to feelings like this again already been through was for nothing. can be really difficult. But you do It’s completely unfair. have to let people know that now have one thing you didn’t have before: experience. their cancer can’t be cured. That experience won’t stop you from REMEMBER having bad days or from wishing this BEFORE YOU READ THIS SECTION wasn’t happening to you again. But it Thinking about death and dying is can help you to focus on one thing: you really tough – and lots of people prefer YOU’VE got through cancer treatment before, not to. So if you’re not sure it’ll help you and you can do it again. to read about these issues, it might be a GOT THROUGH good idea to skip this section. There’s no easy way to talk or read about this. Finding out that your treatment won’t work is a horrible, THIS extremely painful situation. Everyone reacts differently – and there’s no right ONCE or wrong way to react.

145 146 DEALING WITH YOUR EMOTIONS might not be able to get over your • Fear - It’s only natural to have questions You might find sharing your thoughts If you’re told your treatment isn’t likely anger completely. But finding a way to about death. When will it happen? Will and emotions is just too tough, and it’s to work, you might become silent or feel manage it will help you focus on other it hurt? How long will it take? What will important to do whatever feels right like you’re not able to listen or focus things. You can find suggestions for it be like? Will I know what’s happening? for you. A lot of us struggle to talk anymore. You might start crying and dealing with anger on page 92. You can ask your doctors, nurses, youth about death, and in some cultures it’s feel like you’ll never stop. You might feel support coordinator, youth worker, considered disrespectful or dangerous to • Sadness - You probably don’t need completely numb. Or you might feel psychologist or counsellor questions, and the person who is ill to mention dying. us to tell you that you might feel really calm and detached – that happens too. though they might not always be able to If this is the case for you, try to let your upset. That’s not exactly a surprise. You give you a specific answer, it can still be care team know, or ask a friend or family might find you feel too low to share your Especially in the first few days, people helpful to have some information and to member to let them know for you. feelings with others, so don’t let anyone often experience a whole range of talk through the issues that are weighing pressure you into talking if you don’t different emotions. Some may come and on your mind. This is a very personal, emotional time, go quickly. Others can last longer. You want to. Sometimes it can help to write so don’t feel forced into doing anything might feel: difficult thoughts down. You can read • Loneliness - You might feel that no you don’t want to. But if you do want more about sharing your feelings on the one you speak to really understands to talk, talk to people you know won’t • Denial - Continuing to believe that your next page. what you’re going through. And while make things harder for you. You might cancer can be cured and that everything it’s true that your situation is unique, a lot • Detachment - It can be difficult and find you just end up crying on each will be OK isn’t unusual. It can provide of people find it helps to talk to others strange to look around and see people other’s shoulders, but even that can a lot of comfort, and means you don’t who have been told their treatment isn’t catching buses and going shopping and make both of you feel a whole lot better. have to think about what the news working. If you think that could help you, doing other, everyday stuff. You might It’s a totally natural response. really means. But as time goes on, it the charities listed on page 178 might sometimes feel like those things are can be harder to convince yourself that help you make contact. And if you want to talk but don’t pointless now, and that you can’t really everything is fine. And denial can also feel ready to speak to your family or be bothered to do anything anymore. • Guilt - You might be worried that you stop you from doing and saying the friends, your doctors, nurses, clinical This is a common feeling – and often are causing your family and friends a lot things you most want to. psychologist, counsellor or social worker changes with time. Talking about how of pain, and you might be scared about might be able to help. There are also One other point worth making, though: you’re feeling often helps. how they will cope after you’re gone. professional organisations that can sometimes people might think you’re Talking about these sorts of things is • Frustration - You might feel completely offer support at this time - ask your in denial when actually you just want to difficult for everyone, but if you feel able powerless, like your situation is totally out care team for details. focus on other things. You may want to to, it can help to share your feelings. of your control and impossible to change. spend time researching a holiday you You’ll probably find the last thing people PALLIATIVE CARE Not being able to do certain things if know you might not be able to take, for close to you want is for you to feel bad Palliative care is the name given to you’re feeling bad can also be really instance. That’s fine – and it often helps about them. treatment that helps you feel better, annoying. But you can still get involved to explain your approach to other people. relieves your symptoms and improves in decisions about how and where you It’s only natural to have a whole lot of • Anger your quality of life. - Most people feel angry are treated, as well as choosing how you questions right now – and there’s no at some point. You might get want to spend your time – which can such thing as a stupid question. So ask People often think it only refers to angry at your doctors or nurses, help you feel less annoyed. Some people everything that’s on your mind. treatment given after you’ve found out or at your friends and family, or find it makes a big difference to stay that your cancer can’t be cured. But SHARING YOUR FEELINGS at yourself. You might feel like the in control of the things they are able palliative care doctors and nurses might All through this book, we’ve encouraged whole world is against you. It’s to influence. be involved in your treatment right you to be honest about what you’re totally understandable. This is an from the start, because they are simply going through. We’d still encourage that incredibly unfair situation, and you experts in relieving pain. now, but we also know that talking about dying is about as difficult as it gets. 147 148 Palliative treatment can involve a to be cared for if you become too ill to range of drugs, like painkillers and make choices. You might not want to anti-sickness medicines, as well as think about things like that, or you might LET IT ALL cancer treatments like chemotherapy like to talk through where the best place and radiotherapy. would be for you to stay, how you want to be treated and so on. Your family Your doctors will talk to you about and friends can be involved in these SINK IN which palliative care options might work conversations too – and if you’re under best for you – and will aim to choose 18 your parents will be more involved. treatments with as few side effects as possible. Palliative care can make a big You might also want to talk to your We’ve covered a lot of ground in difference in helping you keep your friends and family about anything you’d this book, so here’s a quick recap symptoms under control, so that you can like to happen at your funeral, about keep doing the things you want to do. what you’d like to happen to your things of a few main points we’ve kept - or just what you would want them to MAKING DECISIONS do on your birthday. You might want coming back to. As time passes, you might find your to let them know some of your best feelings become less intense and more memories. Or you might not want to bearable. It might sound strange to think about any of this. Getting diagnosed with cancer can make YOU’RE THE BOSS read, but some people do say they’re your head spin, just when you need to It can be easy to feel that you should gradually able to adjust to finding out But whatever you choose to focus on, take in a whole lot of new information. just sit back and do as you’re told that treatment isn’t likely to work. If don’t ever be afraid to ask questions. We hope this book has cleared up a throughout your treatment. But if you’re that’s the case for you, you might find This is an incredibly tough situation, and lot of things for you, but in case you’re worried or unhappy about something, or yourself thinking about things you want getting the right information is really still feeling a bit dazed and confused, if you’d like to try or do something new, to do, say or get sorted. important as you think through what you here are a few things that we think are don’t be afraid to speak up. It’s your want to do now and start making any You might want to do things you’ve definitely worth remembering. treatment, and your care team are there decision for the future. to listen. always wanted to do. Or you might want YOU’RE NOT ALONE to spend time with the people you love, There is no right or wrong way to No way. There is a huge amount of ASK QUESTIONS doing what you already love. Whatever handle this news, and it’s important support available to you, as you’ll find Keep asking them. Ask some more. you choose is up to you. you are able to act how you want to. out in the coming months. There are all And then ask some more. If you want However you are feeling and thinking sorts of people you can talk to – from to know about anything at all, ask until Your doctors and nurses might want to is natural and understandable. family and friends to social workers and you get an answer that makes sense. We talk to you about advance care planning, clinical psychologists. And there are lots guarantee your doctors and nurses won’t to help you decide how you would like of young people who have – or have had be offended. - cancer, too. Getting in touch with them BEING HONEST HELPS online or through support groups can We’ve mentioned this one a lot. That really help if you’re feeling isolated. The CHOOSE HOW doesn’t mean it’s easy, but it does mean charities listed on page 178 might help it can make you feel a whole lot better. YOU you connect. WANT TO SPEND Cancer can do strange things to your emotions, friendships and relationships. YOUR So – when you feel ready – try and be TIME open about what you’re going through. 149 150 REMEMBER NOTES YOU’RE Thought of something you wished you’d asked? Met someone new whose number you definitely don’t want to forget? NOT Write the details here. ALONE

It can help you and the people close to It’s worth being careful who you you feel less stressed, whereas bottling listen to. There’s a lot of really useful things up doesn’t tend to make them information about cancer out there, but go away. there’s plenty of dodgy stuff too. So choose your sources carefully. And if THERE’S NO RIGHT OR WRONG something doesn’t quite ring true, ask WAY TO FEEL yourself who’s written or said it and why, Angry? Scared? Sad? Jealous? Alone? then do some more research and ask Confused? Guilty? All of these at once? your doctors and nurses what they think. However you’re feeling is absolutely fine. There’s no right or wrong. THIS DOES USUALLY GET EASIER Over time, all of the things that might EVERYONE’S SITUATION IS DIFFERENT seem really tough to deal with right How you experience cancer changes now – like your treatment, or the way based on a lot of things – the type of you feel or look, or your relationships, or cancer you have, how advanced it is, not being able to go to school or work – the kind of treatment you have and so tend to get easier. So try and be patient on. So don’t be tempted to compare with yourself. yourself to other people you meet who YOU’RE DEFINITELY NOT ALONE have cancer. No two experiences are We know we mentioned this one the same. already. But it’s really important that you don’t forget.

151 152 NOTES HANDY STUFF O

153 HANDY STUFF HANDY STUFF

O (OR WHAT (OR WHAT speaking toyourcareteam. to haveitwithyouwhenyou’re sure about.Youmightfindithelps you checkanythingyou’renot we’ve puttogetherthislisttohelp you’re diagnosedwithcancer,so You hearalotofnewwordswhen • • our website. so we canadditto theglossary on [email protected] we’d love you to emailusat: not sure aboutthat isn’tonthislist, And ifyou hearanything you’re THAT MEAN?) THE… DOES GLOSSARY

out, dizzyandout ofbreath which leaves you feeling totally worn haemoglobin in your red bloodcells, a lackofred bloodc Anaemia –Acondition, causedby hair loss Alopecia –The medicalnamefor ells oralackof • • • • •

fr Aspiration –The removal offluid you beingorf Anti-emetics –Drugsusedto stop prev Antibiotics –Drugsusedto fight or a painkiller Analgesic –The medicalnamefor you f Anaesthetic –Adrugusedto stop an operation anaesthetic sendsyou to sleepbefore numbs aspecificarea. Ageneral om your bodyusinga needle ent infection eeling pain.Alocalanaesthetic eeling sick 154 • Benign – The medical term • Care team - The group of • Diagnosis – The identification of • Hormone – Chemicals that are for a growth in your body that people responsible for looking a disease released by glands in your body. They isn’t cancerous after you during cancer treatment. • Donor – A person who gives blood, affect things like your growth, mood • Biopsy – A procedure involving a Your care team is part of your body tissue or organs to be used by and energy levels small amount of tissue being taken multidisciplinary team another person • Immune system – The cells and from your body so cells can be studied • Catheter – A small tube that’s put • External radiation – A type of organs in your body that combine to under a microscope. Biopsies are into your body. Fluids are injected or radiation (radiotherapy) treatment. protect you from illness usually done using an anaesthetic removed through the tube It’s ‘external’ because radiation is • Immuno-compromised • Blood count – The number of • Central line – A catheter that’s given from a machine outside of – The medical term for a weakened different blood cells (white blood placed into a vein near your chest. It’s your body immune system cells, red blood cells and platelets) used to give you fluids and blood, and • Frozen section – A procedure • Immunotherapy – Treatment which in your blood to take blood counts. Lots of chemo involving body tissue being taken helps your own immune system kill the • Blood transfusion – A process drugs are given through a central line and then quickly frozen so it can be cancer cells involving blood from a blood donor • Chemotherapy – Often known studied under a microscope. You’ll • Infusion – The slow injection of being given to you through an as chemo, chemotherapy is a drug have pain relief before a frozen section drugs, blood and other fluids into your intravenous line treatment used to kill off cancer cells • Graft – Healthy tissue that’s taken body, usually through a cannula or • Bone marrow – The soft, spongy • Clinical trial – A type of medical either from a healthy part of your central line stuff in your bones that creates research. These can study a range of body or from someone else and then • Intravenous (IV) – Drugs, blood blood cells things, including the effectiveness of used to replace damaged tissue and other fluids that are given ot you • Cancer – A general term for lots of cancer treatments and the side effects • General Practitioner - Or GP for directly into a vein of treatments different diseases, all of which are short. Your GP is your normal doctor • Leukaemia – The name given to caused by cells not behaving normally • CT scan – It stands for computerised and was probably the person who various types of cancer that begin in • Cannula - A flexible tube, inserted tomography and it’s also known as a referred you for cancer tests in the your bone marrow and affect white into a blood vessel in your lower arm CAT scan, but what you really need first place. There’s a good chance blood cells to know is that a CT scan takes X-rays you’ll stay in touch with your GP or hand, so you can be given things • Localised cancer – Cancer that from a lot of different angles to build throughout your treatment, as he like blood transfusions, medicines hasn’t spread to other parts of up detailed images of your body or she can help you make decisions or an anaesthetic your body • Cytotoxic drugs – Drugs used to kill about things like where you want to • Carcinoma – The name given to • Lumen - A narrow tube used to give off cancer cells. Chemotherapy uses be treated types of cancer that start in your you fluids. If you have a Hickman cytotoxic drugs • HPV - Humanpapilloma virus. Some skin or in the tissues that cover your line fitted, it’s connected to lumens types of HPV are linked to certain internal organs that hang outside your body and are cancers, including cervical cancer covered in a sterile dressing • Haemoglobin – The part of red • Lymph – A clear fluid that flows blood cells that transports oxygen through your lymphatic system and around your body fights infection by collecting unwanted CHECK • Haematology – The branch of bacteria and viruses so they can be medicine that focuses on blood. filtered out through your lymph nodes Doctors who specialise in blood are • Lymphoma – The name given to called haematologists IF YOU’RE various types of cancer that start in

NOT your lymphatic system 155 SURE 156 • Lymphatic system – A network • Platelets – The part of your blood of thin tubes that runs throughout that helps to stop bleeding by causing your body, transporting lymph and blood to clot fighting infection. It forms part of your • Play specialists - Experts in helping immune system children to play in ways that help • Lymph nodes – Glands, found them cope, deal with anxieties, make in places like your groin, neck and friends and keep developing during armpits, that form part of your cancer treatment. Play specialists lymphatic system and help to fight usually work on paediatric wards infection by filtering out unwanted • Primary cancer – The place where bacteria and viruses cancer begins. If cancer spreads to [email protected] • Malignant - The medical name for a somewhere else in your body, it’s growth in your body that is cancerous called secondary cancer and may spread • Prognosis – The most likely outcome • Radiation – A type of energy that • Stem cells – Very new cells in • MDT - Multidisciplinary team, or the of a disease can be used to damage and destroy your body that divide to form other, group of health professionals who • Prosthesis – An artificial cancer cells. X-rays are the main type specific types of cells – for example work together to diagnose, treat and replacement for a part of the body of radiation used to treat cancer blood cells, muscle cells and skin cells care for young people with cancer that has to be removed • Red blood cells – The cells in • Terminal – A word used to describe • Melanoma – A type of skin cancer • Proton beam therapy - A kind your blood that contain haemoglobin, diseases that can’t be cured that affects cells called melanocytes of external radiotherapy that targets which transports oxygen around • Total body irradiation – A type • Metastasis – A secondary tumour cancer cells with particles called your body of radiotherapy usually used to treat caused by cells from a primary protons instead of x-rays • Relapse – The return of a disease, leukaemia that’s given to your whole tumour spreading to another part of • Radiotherapy (or radiation usually after treatment and a period body, rather than to a particular area your body therapy) – A cancer treatment of remission of cancerous cells • Oedema – Swelling caused by a that works by targeting cancer cells • Remission – A period when the signs • Tumour – An abnormal growth in build-up of fluid in your body using various types of radiation. and symptoms of a disease are no your body • Oncologist – A doctor who Sometimes radiation therapy is given longer evident • Tumour marker – A substance specialises in treating cancer from outside your body (see ‘External • Sarcoma – The name given to produced by a tumour. It’s found radiation’, above) and sometimes it’s • Palliative care – Treatment various types of cancer that start in your blood and can help doctors given from inside your body (using designed to relieve the symptoms in your muscles, bones, nerves, understand how a tumour is behaving liquids and implants) of illness. Sometimes people think cartilage, tendons, blood vessels or • TYA - Teenage and young adult.

palliative care is only for people who other soft tissues TYA is often used to describe young

aren’t expected to be cured, but really • Secondary cancer – A type of people with cancer who are under 25

it’s any treatment that’s given to cancer that has spread from a primary • Urinary catheter – A type of relieve symptoms – at any time during cancer somewhere else in your body catheter that’s put in your bladder and your care • Side effects – Secondary, usually used to help you wee. People who use • Plasma – The part of your blood that unpleasant, effects caused by urinary catheters frequently learn to transports blood cells and platelets treatments. Side effects can occur put them in themselves around your body after chemotherapy, radiotherapy • White blood cells – The cells in and surgery your blood that help to fight infection

157 O 158 DON’T FEEL IT’S LIKE TALKING? THESE CARDS GREAT TO CAN HELP HAVE YOU AROUND At times during your treatment,

you’ll probably feel like being by So treatment. help during cancer can really you friends around Having appreciate you mates your tell to want be useful if you might these cards going on. what’s them know them and let yourself and not speaking to anyone.

There might be times when you want people to do things for you but you struggle to ask for help.

Sometimes you might find that friends and family aren’t sure what to do or say. THERE’S And maybe there are things you want to say but don’t feel ready to talk about. THIS For all of those times, and for when you just want to say thank you, we’ve created these cards. Some are for particular people, others are more general. You can tear them out and ONE put them in the post or wherever people will find them. And you can print them out from our website if you need more (search ‘Don’t feel like talking cards’). THING Sometimes writing can be a lot easier than talking – but just as powerful. 159 you But if can help. how they say when people ask to what to know difficult t’s time the next Then need, try writing them on these cards. think of things you and talk it through. over hand one of the cards can do, they someone asks what 160 It means a lot to me to have you as a friend. I know things can be difficult at the moment and you might be worried about doing or saying the wrong thing, but I’d love you to… Call me, email me, text me and message me. It’s always good to hear from you, even if I don’t feel up to replying straightaway Keep inviting me to things. I might not always make it, but I’ll come whenever I can HERE’S Come and hang out with me at hospital Come and spend time with me at home WHAT’S Send me things to make me laugh – like jokes, DVDs, photos and videos Talk about the stuff we’ve always talked about HAPPENING Let me know what’s going on in your life Be honest about how you’re feeling, and feel free to ask questions when you have them (I just might not want to answer them all) FROM Tired of explaining which cancer you have or what treatment you’re you’re treatment or what have you which cancer of explaining Tired in handy. come might these cards Then having?

If you get a chance to do this one thing for me, it would make a real difference. I don’t want to hassle you, but if you’re able to help I’d really appreciate it. HI MUM DAD

FROM

Got something you’d like to say to your parents but don’t fancy talking or but don’t fancy parents your to say to like you’d Got something for one of these cards. reach Just No problem. words? can’t find the 161 162 It gets pretty exhausting talking about cancer all the time. But I want you to know what’s going on, so here are the basics… I have… HI Which means that… HI The treatment I’m having is… Most of the time I feel… MUM I’d prefer not to talk about… MUM What I’d love you to do for me is…

FROM Got something you’d like to say to your parents but don’t fancy talking or but don’t fancy parents your to say to like you’d Got something for one of these cards. reach Just No problem. words? can’t find the

Sometimes I try and say something but can’t find the right words or end up getting upset. So I want to give you this card to make sure you know how I’m feeling.

I know this is really tough for you and I wish you weren’t so worried I really appreciate the help you give me I’m sorry I got angry at you HI Thanks for letting me do some things on my own. I know that’s not easy for you Please try and remember I’ll ask for help if I need it. I know you’re there for me Thanks for being my taxi and my chef Don’t forget to take some time for yourself. It’s important DAD Remember we can still do the stuff we’ve always done. I don’t want everything to be about cancer LOVE

Got something you’d like to say to your parents but don’t fancy talking or but don’t fancy parents your to say to like you’d Got something for one of these cards. reach Just No problem. words? can’t find the 164 Sometimes I try and say something but can’t find the right words or end up getting upset. So I want to give you this card to make sure you There might be times know how I’m feeling. when you want to let people I know this is really tough for you and I wish you weren’t so worried I really appreciate the help you give me know that you’re not feeling I’m sorry I got angry at you great, or that you need to be Thanks for letting me do some things on my own I know that’s not easy for you by yourself, or that you’ve Please try and remember I’ll ask for help if I need it. got something on your I know you’re there for me Thanks for being my taxi and my chef mind. These cards are for Don’t forget to take some time for yourself. It’s important those times. Remember we can still do the stuff we’ve always done. I don’t want everything to be about cancer Leave them on your table if you’re in hospital or somewhere people won’t miss them if you’re at home. And once you’ve used them once, LOVE tuck them into the back of the book so you can use them again.

Sometimes I try and say something but can’t find the right words or end up getting upset. So I want to give you this card to make sure you know how I’m feeling.

I know this is really tough for you and I wish you weren’t so worried I really appreciate the help you give me NOT I’m sorry I got angry at you I’M Thanks for letting me do some things on my own. I know that’s not easy for you Please try and remember I’ll ask for help if I need it. UP FOR I know you’re there for me Thanks for being my taxi and my chef Don’t forget to take some time for yourself. It’s important TALKING Remember we can still do the stuff we’ve always done. I don’t want everything to be about cancer RIGHT NOW LOVE

166 KEEP YOUR I’M FEELING CARDS HANDY TIRED

KEEP YOUR I’M FEELING CARDS HANDY SICK

168 I’D KEEP YOUR LIKE TO TALK TO A CARDS DOCTOR OR HANDY NURSE

Over the next few pages, KEEP YOUR we’ve included a range of cards you might want to give to friends, family CARDS or people on your care team, whenever the time HANDY feels right.

170 I WANTED KEEP YOUR TO WRITE TO TELL YOU CARDS WHAT’S ON MY HANDY MIND

THANK YOU IT REALLY MEANS YOU A LOT TO HAVE O AROUND

172 I hope you don’t mind me writing it down, but it can be hard to explain it lots of times. I’D LOVE IT IF YOU COULD DO THIS FOR ME

LOVE

I hope you don’t mind me writing it down, but it can be hard to explain it lots of times. I DON’T FEEL LIKE TALKING RIGHT NOW, BUT IT’S IMPORTANT TO ME THAT YOU KNOW THIS LOVE

174 If you get a chance to do this one thing for me, it would make a real difference. I don’t want to hassle you, but if you’re able to help I’d really appreciate it. HERE’S THE EDITED VERSION OF WHAT’S HAPPENING TO ME FROM

I hope you don’t mind me writing it down, but it can be hard to explain it lots of times. HERE’S THE EDITED VERSION OF WHAT’S HAPPENING

LOVE TO ME

176 I hope you don’t mind me writing it down, but it can be hard to explain it lots of times. USEFUL CONTACTS

There are lots of great organisations out there that can answer your questions, offer advice and put you in touch with LOVE useful people.

For starters, we’d recommend: • Teenage Cancer Trust • Government website (obviously…) www.gov.uk www.teenagecancertrust.org • Macmillan Cancer Support I hope you don’t mind me writing it down, but it can be hard to • Cancer Research UK www.macmillan.org.uk explain it lots of times. www.cancerresearchuk.org • NHS choices • Citizens Advice www.nhs.uk www.citizensadvice.org.uk • CEOP • CLIC Sargent (for advice on staying safe online) www.clicsargent.org.uk www.thinkuknow.co.uk/14_plus

And we’d also recommend heading to our website, where you’ll find contact details for a whole host of organisations that can help with issues like fertility, drugs, smoking, alcohol, money, insurance and your rights. Simply head to www.teenagecancertrust.org/usefulcontacts

If you have any queries, or would like to know more about the support Teenage Cancer Trust can offer young people, please contact LOVE [email protected]

178 NOTES

Email addresses? Questions for your care team? Meal ideas? Medical explanations? Song recommendations? Blogs to check out? Random thoughts? Lottery numbers you saw in a dream? Whatever you want to remember, the next couple of pages are all yours.

179 180 HOW WE PRODUCE ACKNOWLEDGEMENTS OUR CANCER Thank you to every single person who INFORMATION helped develop this book. We really hope we haven’t missed anyone... Young people with cancer were involved This means we have undergone a rigorous in every stage of creating this book. assessment to check that all of the Thank you to our team of experts, Teenage • Dr Louise Soanes They helped us choose the writer. They information we produce is clear, accurate, Cancer Trust employees and all of the Teenage Cancer Trust Nurse Consultant at told us what they wanted to read. And balanced, evidence-based and up-to-date. fantastic young people and support staff University College London Hospitals NHS they checked out what was written and To find out more about The Information who gave such valuable input, especially Foundation Trust suggested changes too. Standard, visit: www.england.nhs.uk/tis those who attended workshops at the Royal Albert Hall and from our Teenage • Vicky Britton Former Teenage Cancer Trust Youth Support Why do we work like this? Because we Cancer Trust units in Cardiff, Glasgow, Coordinator, Bristol & the South West don’t just care about producing accurate Sutton and Birmingham, for all their help. • Wendy King information. We care about producing EXPERT REVIEWERS Consultant Nurse, formerly at University accurate information that’s as useful as • Jamie Cargill College London Hospitals NHS possible for young people. And to make Teenage Cancer Trust Lead Nurse for Foundation Trust sure that happens, young people have to WANT TO GET IN TOUCH? the TYA South West Cancer Service be at the heart of the process. TEENAGE CANCER TRUST TEAM: If you’re a young person who has cancer • Laura Elder Debbie Adams and would like to help develop our materials, Teenage Cancer Trust Lead Nurse for Accuracy is vital too, of course. So we Naz Ali we’d love to hear from you. Please email: TYA, Merseyside and Cheshire started by only using trusted sources, Serena Bentine • Dr Lorraine Gordon and we then got everything reviewed by [email protected] Gary Doig Speciality Doctor in Teenage and Young specialist doctors, consultants, nurses, Chloe George To find out more about the evidence Adult Cancer Care at Southampton psychologists and youth workers. All of Julia Cornford-Hooke sources we use, please email: General Hospital which means the information in this book Susie Shaw [email protected] is right and up-to-date, so you can use • Dr Rachael Hough Helen Veitch Consultant Haematologist and Clinical it to make the best decisions about your Alex Bermingham This book was first printed in June 2015, Lead for Young People’s Cancer healthcare and treatment. and reviewed and then reprinted in August Services, University College London Writer: Matt Kurton Design: Juice Design THE INFORMATION STANDARD 2018. It’s due to be reviewed again in 2021, Hospitals NHS Foundation Trust Printer: Red River Solutions Teenage Cancer Trust is a certified but if you spot anything you’re not sure • Dr Clare Jacobson member of The Information Standard, about, or have any queries, comments, Specialist Clinical Psychologist, Teenage If you have any queries, or would like to know more about the support ensuring we’re writing to strict quality ideas or concerns, please do email: and Young Adult (TYA) Cancer Service, Teenage Cancer Trust can offer control guidelines and providing [email protected] Guy’s and St Thomas’ NHS Foundation Trust young people, please contact information you can trust. • Dr Martin McCabe [email protected] Clinical Senior Lecturer and Honorary Consultant Paediatric Oncologist, University of Manchester and The Christie NHS Foundation Trust 181 182 ACKNOWLEDGEMENTS IN CASE YOU’RE WONDERING ABOUT US…

We’re Teenage Cancer Trust, CANTEEN QUEEN’S TRUST We’d like to extend special thanks to Everyone at Teenage Cancer Trust wants and we’re here for young people CanTeen, The Australian Organisation to say a huge thank you to The Queen’s for Young People Living with Cancer. Trust, whose generous grant funding with cancer. made it possible for us to produce this CanTeen’s Book ‘Now What? Your book and to give young people such a guide to dealing with cancer’ provided big role in creating it. We believe every young person should get To find out more about our work – and about the inspiration for this one, and we’re the best possible care and support from the how you can help us to keep doing what we grateful to CanTeen for their generous moment the word cancer is first mentioned. do, head to teenagecancertrust.org. help and support. Our website includes personal stories from So we develop specialist cancer units. young people. We fund nurses and youth support coordinators. We bring young people Would your school and friends benefit from We’d also like to thank the together to share their experiences and knowing more about cancer and what it’s following organisations, whose gain support from each other. We fund like to be a young person with cancer? websites and resources were training courses to help health professionals Search for ‘Mates Matter’ on our website. valuable sources of information: understand how cancer affects young people.

• Cancer Research UK – And we publish information about cancer. www.cancerresearchuk.org The sort of information you’ll find in this • CLIC Sargent – book. Honest answers. Sound advice. Just www.clicsargent.org.uk like it says in the title. • Macmillan Cancer Support – www.macmillan.org.uk • NHS Choices – www.nhs.uk • National Institute for Health and Care Excellence (NICE) – www.nice.org.uk 183 X Honest Answers Sound Advice A Young Person’s Guide To Cancer

First published 2015 This version (Version 2) published 2018 To be reviewed: 2021 www.teenagecancertrust.org

Teenage Cancer Trust is a registered charity: 1062559 (England & Wales); SC039757 (Scotland)