YOUNG VOICES TRANSFORMING THE LIVES OF YOUNG PEOPLE WITH CANCER INTRODUCTION CONTENTS
1 Introduction There’s never a good time to get cancer, but for a teenager the timing seems particularly cruel. Young people can get some of the most rare 2 Teenage Cancer Trust and aggressive forms of cancer. Their rapidly growing bodies work against them, enabling cancer to grow faster. The emotional upheaval 4 Background of adolescence can make a cancer diagnosis even harder to cope with. 6 Quality 12 Access Every day in the UK, six young people aged between 13 and 24 years old will have to face that diagnosis. Yet, as this only represents 18 Diagnosis 0.6%1 of all cancers they are often misdiagnosed initially and lack access to specialist services tailored to their specific needs. 22 Survival 26 Conclusion This report is a collection of messages from teenagers and young adults 28 Appendix about their experiences of having cancer, the issues important to them and their views on Government policy on health services in the UK.
These messages were collected in a variety of ways - video messages which have been transcribed; hand written and emailed messages. They come from young people across the UK and their families. Selected messages highlighting key themes make up the body of the report; the appendix contains all of the messages.
AUTHOR: Sasha Daly 1'Incidence 2008 - UK' Cancer Stats report, Cancer Research UK (2011)
Young Voices - Transforming the lives of young people with cancer | 1 TEENAGE CANCER TRUST
Teenage Cancer Trust believes young people’s lives shouldn’t stop Teenage Cancer Trust aims to build enough specialist units so that because they have cancer, so we treat them as young people first, all young people needing hospital treatment for cancer across the cancer patients second. UK have access to the dedicated, specialist support we provide.
We exist to improve the quality of life and chances of survival for We lead the world in the care of young people with cancer. the six young people aged between 13 and 24 diagnosed with cancer Together with these young people, their families and the passion every day in the UK. We want to make sure every one of them has of our supporters, we’re challenging healthcare to meet the needs of access to the best possible care and professional support from the young people with cancer and in doing so, we’re transforming lives. point of diagnosis.
• We fund and develop specialist units within NHS hospitals that bring young people together to be treated by teenage cancer experts in an environment tailored to meet their needs.
• By educating young people about cancer and working with health professionals to improve their knowledge, we work to significantly improve their diagnosis experience.
• And through our own research and by working with our partners in the NHS, across the UK governments and organisations both nationally and internationally, we strive to improve survival rates.
2 | Young Voices - Transforming the lives of young people with cancer BACKGROUND
Health services in the UK are currently facing some of the biggest Teenage Cancer Trust’s strategic priorities were born out of financial and structural challenges ever. The economic crisis is having consultation with young people with cancer, their families, health a huge impact, with unprecedented cuts and efficiency savings being professionals, experts in teenage and young adult cancers, and trustees demanded. As a devolved responsibility, health services are now and staff. These priorities reflect our experience and understanding of controlled by different political parties. The ageing population and the challenges faced in delivering services for teenagers and young increasing numbers of people surviving and living with cancer are adults with cancer and their families over the last 21 years: also having a significant impact on cancer services. QUALITY & ACCESS These economic, political and social issues are dominating decisions about health services across the UK. It is important, against this • Funding and developing specialist facilities for young people changing background, that the improved recognition, services and with cancer across the UK, including specially trained staff outcomes for teenagers and young adult cancers are not forgotten or reversed. The UK is leading the world in services for teenagers DIAGNOSIS & SURVIVAL and young adults with cancer, but there is still more to do. • Significantly improving the diagnosis experience and outcomes The NICE Children and Young People’s Improving Outcomes for young people with cancer Guidance (2005) (NICE CYP IOG) helped to secure a step change in the recognition of the specific needs of the 13 - 24 year old age group, and design of services to meet these needs. Teenage Cancer Trust is supporting the delivery of the recommendations in the NICE CYP IOG. This guidance is recognised in England and Wales, and similar framework for Scotland and Northern Ireland would help improve services across the UK.
4 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 5 QUALITY BEING WITH OTHER TEENAGERS AND YOUNG ADULTS
Teenage Cancer Trust units aren’t like ordinary cancer wards. Everything Young people with cancer being treated on adult or children’s about them has been designed to give teenagers the very best chance "Staffing levels in one hospital were very low and wards is often inappropriate and at worst damaging: of a positive outcome. This is backed up by our Nurse Consultants who I was regularly made to feel like a nuisance. My provide clinical care, develop research, deliver professional education mum and my sister (who is a student nurse) did and ensure that standards remain as high as possible. most things for me i.e. changing my bed, dressing my hickman line, helping me shower. The nurses We know how damaging it is to take a young person away from their administered my chemo and gave me drugs (which “I found having to be treated with normal life - their friends, their environment, and put them in a cancer ward with small children or older people. were always late). I understand they were very short adults, mainly OAPs, a lot worse to staffed but I do not think this is an excuse... On a I was treated on an handle than the cancer diagnosis itself... Quality is about making sure the staff and environment are specialised positive note, I found the care at the beatson (West the only thing that made it bearable and tailored to benefit the specific needs of young people. We are of Scotland Cancer Centre) outstanding and found adult oncology ward calling for national standards across the UK setting out expected service the nurses lovely... It was the little things like having was having the Teenage Cancer Trust standards including staffing and age appropriate units and services. a microwave in the Teenage Cancer Trust room or a and it was the hardest team bringing me things to do and nurse having a chat in the middle of the night.” having a friendly face. To make it as STAFFING experience of my life. normal as possible. Mairead, 25, from Glasgow, diagnosed with germ cell tumour Teenagers and young adults face a range of challenges associated with their age and stage in life. These challenges don’t disappear with I had to sleep next to old people who a cancer diagnosis, which is why professionals trained in the needs of were incontinent; who were planning teenagers and young adults are so valued: "I feel it is very important that every teenager and funerals... My whole experience would their entire family are given psychological support have been a completely different story whilst facing cancer. It is simply impossible to expect if I was on an age appropriate ward, a young person, who has so many things to worry Stephanie, 19, diagnosed aged 17, from Hertfordshire, diagnosed with Ewings Sarcoma (right pelvis) with people I can relate to, and with about including academic work, the carelessness of friends' comments, to try to cope on their own." staff who wanted to work with the teenage and young adult age group.” Nilani, 14, Bromley Kent, diagnosed with Adrenal Tumour
6 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 7 Yet, being with people of the same age makes the "I would like to open your eyes to 'God’s waiting world of difference, transforming the experience: room' which is my clinic and being the youngest person by about 40 years as I have 'old man's "I'd never really met other "My experience of the NHS is a good one - the leukaemia'... I want you to know how amazing us care and support I have received is second to 'Cancer Kids' are, and the importance of looking teenagers until coming to none. I hope that this will continue, not just for after us properly." Teenage Cancer Trust or me but all other young cancer patients I have met and who are still undergoing treatment." having the hospital meeting." Jadi, 23, diagnosed with breast cancer Fiona, Morvern and Kirsty "I want the nhs to be more focused to people's needs. when I was having chemo and radiotherapy I was never being treated with anyone that was even similar to my age and "The treatment that I am allowed to access "I hope you understand the need to what I was going through. and every week I went through Teenage Cancer Trust is the best kind into chemo someone else had died. It was just "Babies screaming at 3am along with of treatment I could ever imagine and it's unlike allow the age limit of the Teenage too hard to deal with. There was no one really drip stands bleeping equals unhappy anything anywhere else in terms of getting ill, so Cancer Trust to remain at 25, because specialised in young people." and tired teenagers." keep it in the NHS." if it is lowered to 19, she would lose out on all of the benefits that Teenage Cancer Trust bring, and the support they deliver, not just to patients, but to families as a whole"
Kirsty, 15, East Kilbride, South Lankarshire, whose older sister Morvern is 24 and has ovarian cancer 8 | Young Voices - Transforming the lives of young people with cancer HOSPITAL FOOD
Food is another factor that if improved would provide a better quality "Over the past 18 months I've been experience. In Teenage Cancer Trust units we encourage healthy "You should come on a date with me to hospital eating to support recovery, and we provide opportunities to have and experience life as an inpatient for a young some control over food whilst in hospital through providing kitchen adult yourself. Seriously, you want to try the facilities. Those who do experience regular hospital food have in five different hospitals and the baked potatoes because you won't believe it, reported bad experiences: it's shocking." food has been abysmal. I was always
"Get the food sorted out, how difficult can it be to sort out food. Why can't people see that encouraged to eat well and good and food should be used as a medicine and not just for the sake of it, instead of giving us slop that's We need disgusting, that isn't going to make anybody feel nutritious food-however no good food better? Do something worthwhile. It can't be that good food difficult, surely." was available. A lot of it was very stodgy and not pleasant to eat."
Mairead, 25, from Glasgow, diagnosed with a germ cell tumour
10 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 11 ACCESS " Transition into adult services
Less than half of teenagers and young adults with cancer are getting TEENAGE AND YOUNG ADULT UNITS needs to be a lot smoother; it is access to specialist age appropriate services2 - more is needed to improve outcomes for this age group. Teenage Cancer Trust units bring teenagers with cancer together with difficultwhen you have been in We want every young person with cancer in this country to have that loads of new friends of their own age so they can support each other. chance, and in order to achieve this we believe there needs to be This is an important part of maintaining some normality to life and children's services for so long to appropriate funding to develop and deliver services. integrating back into life after treatment. Access to these specialised units are valued by young people: move into adults. Doctors and
"More teenage wards." nurses from adult services need "More specialist help for young people." to be more understanding.” "Teenage Cancer Trust wards for everyone, everywhere please."
"Teenage Cancer Trust and what it does should be available for everyone."
"Please make sure that all young people from the ages There should be more of 13-24 have some kind of access to appropriate Hannah, 20, from Devon but currently living in Aldershot studying to be a children’s nurse. services for young people." services available for Diagnosed with Acute Myeloid Leukaemia "Just develop more wards for younger people instead people like me and of being on adult wards." our age group. "Please build more hospitals for other kids that can't 2‘How many teenagers and young adults with cancer are being referred to specialst care in get into them." England?’ O’Hara C et al, The North West Cancer Intelligence Service, Manchester (2011)
12 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 13 LOCATION
Every Principal Treatment Centre, or equivalent across the UK, should have a specialised unit for teenagers and young adults with cancer "I have undergone two courses of radioactive iodine which can treat young people and provide expert advice to other treatment. Unfortunately my local hospital doesn't hospitals. The experience of not being able to access a specialist service, offer this treatment to children, but does to adults. knowing that there are some out there is incomprehensible If I was much younger I could probably understand to young people: the decision much more, but I generally would say being 16 I feel grown up enough to have treatment in a local hospital. I ended up having to travel 102 "I am 17 years old and from Somerset. I was I was treated on an miles to London. Even though I know it's in my best diagnosed with hodgkin's lymphoma. At first my interest to be sent for my treatment in London, adult chemotherapy ward family and I had to travel to Bristol for my first I couldn't help but wonder there must have been cycle of chemotherapy. Fortunately I was able to have which is very small as the some way I could have had treatment close to home. my further three cycles locally, to avoid the tiring Leicester hasn't yet got a Teenage Cancer Trust unit travel to and from Bristol, which didn't allow us to teenage and young adult and the hospital in London does." continue with our lives as normal. I found that once service in Cambridge was too I had decided to be treated at my local hospital, the information and support decreased. Paris, 16, from Leicester, diagnosed with Papillary Thyroid cancer far for me to travel (and also Rebecca (Becky), 18, I wasn’t given the choice of In the South West in general I feel like there is not a "The availability of teenage specific cancer units: diagnosed aged 17, with Hodgkins Lymphoma lot of support for young people with cancer, and the where I was to be treated). they need to be available all over the country which lack of a unit in the region makes me feel as though are big enough to hold all the teenagers and young I found it very difficult. we are somewhat forgotten, as we have nowhere to adults diagnosed. They are a vital part of the hospital go specifically." just like separate wards for children, why should teenagers be any different!" Lucy, 17, from Somerset, diagnosed with Hodgkin’s Lymphoma
Stephanie, 19, diagnosed aged 17, from Hertfordshire, diagnosed with Ewings Sarcoma (right pelvis)
14 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 15 CUTS TO THE NHS
Young people with cancer are clear that specialised services need to be protected so they can access them: "With regard to the NHS, I personally think those Mr Cameron , £168 billion is a lot of money that needs cuts should be made elsewhere. Maybe in regards to military spending or not military because I know those guys are doing a tough job. But you can make cutting, or needs to be paid back. If I was in debt myself, I cuts. You're building 5 new war ships, what's the point of that? I just don't think the NHS is the place would reduce my lifestyle. I’d stop drinking and start paying Don't cut youth wards, to make cuts." Teenage Cancer Trust back my debts. That ’s what you need to do for the country. wards, don't stop installing those units. give people the "The only way to make progress in something as People don’t seem to understand that, and I know you’re opportunity to spend time complex and frustrating as oncology is to find the together instead of sticking solution. Why isn't more money being pumped into getting a lot of bad press, but stick at it. cancer research? Although the political theatre is young people on an old somewhat entertaining on a Wednesday afternoon, persons ward, it doesn't I find the soundbite "we inherited from the party One thing I will say is that cancer, particularly among young work, we need to be around opposite" wearing rather thin. Increased government like minded people. spending, that is done effectively, is the only way to people, is something where if cuts to the NHS need to be made improve cancer care."
James, 18, diagnosed with Anaplastic Large Cell Lymphoma in that area, then maybe in paperwork or in bureaucracy, something that won’t affect the patients themselves.
16 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 17 DIAGNOSIS
Teenagers and young adults too often experience delays in diagnosis. GPs AND DIAGNOSTICS "My beautiful daughter died in june this In a survey we carried out in 2011 with young people with cancer, one in "It took me around 6 months to get diagnosed year from cancer after a two year hard and four young people reported that they visited their GP four times or more with going back to the GP every week, they kept before they were diagnosed.4 Young people with symptoms of cancer and their families often report difficult battle which involved over a year that they felt ignored by professionals when they raise their concerns, on saying it's growing pains or you must of pulled a muscle, the pain's in your imagination. They wouldn't of chemotherapy and numerous operations. We know that young people can ignore their symptoms or be too scared and this can have grave impacts on the relationship of trust between send me for an X ray because they're too expensive, to speak to their doctor immediately so it’s vital that when they do, patients and professionals and better outcomes for young people: She was looked after in a teenage cancer trust GPs listen to them and take appropriate action. Two week referral for they also didn't realise that my age group would unit. Prior to diagnosis it took over 6 months suspected cancer is a major breakthrough for cancer patients, but it be at such high risk of getting cancer. GPs need to for her to get the appropriate treatment as have a regular 3-5year training in new discoveries won’t benefit young people until GPs think about cancer when they see "I would like to raise the issue of delays in diagnosis. at the beginning her gp refused a simple young people with symptoms. I went to my GP five times before they started in teenager cancers in particular because there is x-ray request. taking me seriously. I wasn't eating very much and the stigma saying this age group puts things on to We advocate for a three strikes approach - where GPs automatically unable to go to the bathroom and they kept sending get out of work college or school. We are not taken refer young people presenting with the same symptoms after three me off with laxatives. My mum is a GP and it wasn't seriously and some people don't have the support or These young people are not listened to. The repeat visits. We are also calling for better understanding of cancer in until she got involved that they decided to scan me. confidence to keep pushing when something's wrong. fact that she had never attended her gp, apart young people and access to diagnostics to improve diagnosis for GPs. I felt they were just fobbing me off and couldn't be And this late diagnosis makes it a lot harder to win from routine childhood vaccinations, should your battle." Young people also need education about cancer to increase their bothered listening to me." have been enough for someone to realise this confidence in knowing when something is wrong with their health and was a person who didn't complain for the approaching health professionals, we believe this should form part of Mairead, 25, from Glasgow, diagnosed with germ cell tumour Stephanie, 19, diagnosed aged 17, from Hertfordshire, the curriculum in schools across the UK. diagnosed with Ewings Sarcoma (right pelvis) sake of it. I would urge that early diagnosis and treatment is essential and that needs to come from the gp. Late diagnosis and allowing young people to suffer is a terrible injustice. I feel my daughter was let down in the worst fashion ."
Karen, Mother of Zoe, Edinburgh 4Find Your Sense of Tumour Conference, Teenage Cancer Trust (2011)
18 | Young Voices - Transforming the lives of young people with cancer Continued: “Again the Doctors didn’t seem bothered about the lump, this time diagnosing me with ASTHMA! So I After noticing I had a huge lump on my throat I went home, began using the inhalers I had been equipped with. They seem pointless; they did not help at all! That went to the doctors. The Doctor told me I had adult night I went to bed relatively early, A couple of hours later, I jumped up gasping for air! I literally could not croup and to go home to inhale steam. So I did, but breath, my dad ran upstairs trying to help me and I just collapsed outside my bedroom. it did not improve my breathing. I was practically I stopped breathing, my heart stopped. My dad knew struggling for breath walking up a couple of First Aid and luckily bought me round after my heart stopped several times. If it was not for him, I would not be stairs! My parents were still concerned, so the here to tell this story. If the doctor had simply sent me for an x-ray then I would not be mentally scarred as much next day my dad took me to Nottingham Queen Me celebrating my 21st birthday in London recently as I am. Something needs to change to see a quicker diagnostic; no-one deserves to go through what me and Medicals centre’s A and E. my family did that night.”
Danielle, 21, diagnosed with Non-Hodgkin’s Lymphoma six years ago, now studying at Nottingham Trent University
20 | Exploring the Impact of the Built Environment SURVIVAL
"I will have permanent struggles for the rest of “I can say I have survived Cancer which is amazing my life. My mobility has been made a lot more Studies have shown that five year survival statistics for teenage and LATE EFFECTS but sadly I have had friends who have not. Though young adults with cancer are approximately 69% for males and 73% for difficult relying on walking aids, wheelchairs, other I survived Cancer this has come at a price. Late females. However due to the spectrum of tumour arising in teenagers people, lifts and downstairs accommodation for and young adults this ranges from 89% for male germ cell tumours (e.g. The end of treatment for cancer does not mean the end of the effects of the rest of my life. Now due to the chemotherapy effects. If growing up in your teens isn’t hard cancer. Indeed more is being discovered about the late effects of cancer and radiotherapy I have become infertile so that is testicular), to 42% for males with leukaemia and 46% for bone sarcoma. enough I had to deal with the late effects of my These survival rates have not improved for over 20 years.5 as survival increases. This is a huge issue for young people: another huge step for me and my partner to come to terms with and we can only hope the funding treatment, the hardest part being told that I most We know that young people have a much better experience and chance will be there for us when we are ready to have IVF. likely will not be able to have children this I am still of survival if they are diagnosed early and treated by teenage cancer "I think more aftercare could be provided by the Having children has always been my dream and I experts, in an environment tailored to meet their needs. We need better unsure of today. I would probably look different if NHS. During my treatment I had to take steroids did everything possible in the time I had to protect data about teenage and young adults with cancer, and their support to shrink the tumour. This increased my weight my fertility but it failed. So I hope you can help put I had never had Cancer been taller and had bigger needs to improve their quality of life during and after treatment. horrendously, I began my treatment at 66kg by the something in place for myself and many over men assets but at the same time it would have not made end of my steroids I was 94kg. It has taken blood, and women like me!" me the person I am today. sweat and tears to finally shed all this weight! I have spent a ridiculous amount of time at the gym, Stephanie, 19, diagnosed aged 17, diagnosed with Ewings Sarcoma (right pelvis) “ Please implement the survivorship controlling my eating and basically changing my I feel there needs to be better care for people like guidance that the National Cancer whole lifestyle. I endured all this by myself, no help. me who had cancer when they were younger but I feel I would of benefited from advice on how to lose now suffer from the late effects of the treatment Survivorship Initiative is working the weight, what type of exercises and what food I on. It is time to stop young people should eat." these last longer than people think and though they do not always show on the outside like the getting ‘lost in the system’, it’s not Danielle, 21, diagnosed with Non-Hodgkin’s Lymphoma six years ago, now treatment for Cancer it can hurt on the inside and I studying at Nottingham Treat University all about treatment; people have to feel this is forgotten.” live with the physical and emotional Hannah, 20, from Devon but currently living in Aldershot studying to be a children’s nurse. effects of it too.” Diagnosed with Acute Myeloid Leukaemia 5 Survival analysis for TYA in England, Professor Jill Birch (University of Manchester) 2008
22 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 23 WORK, EDUCATION AND BENEFITS RESEARCH AND MEDICINES
Finishing treatment means the welcome, but daunting, task of returning Investment in research and medicines is important to young people with to everyday life. Whilst cancer is clearly defined as a disability in law, "I'd like to bring to your attention the direct impact cancer, who know that access to clinical trials and developing best care "David Cameron's being silly with the way he we know that young people with cancer are often not getting access to on my career that my cancer had. I was aware of and treatment can save lives. chooses to spend his money about some cancer the support they need including benefits, and support to resume their there being a lump in my neck around May/June drugs and that he should rethink the way he treats education and/or employment: There is a significant lack of trials for the types of cancers that affect 2010 when as level exams are taken and due to the teenagers across the country." teenagers and young adults, but for the ones that do exist, often the age severe fatigue I suffered (and still suffer from today range excludes them. as a result of my chemotherapy and radiotherapy "As a teacher of a student who was a cancer survivor treatments) caused me much trouble during my and as a mother of a teenager who has just finished In medicine the gold standard for identifying the best options comes exams. Therefore my exam results did not fulfil my "There needs to be, in my opinion, more money treatment - it is really important that David Cameron from randomised clinical trials. So through missing out on clinical trials, full potential and I feel that this should be more young people are missing the opportunity to have improved treatments spent on the research especially for people that are waives further education fees for students who go over acknowledged by people such as yourself as this and outcomes. relapsed like myself, instead of focusing on the 19 years of age and lose out on education and then would lead to universities considering this when, as majority percentage of people that are cured. return to college to face high fees." you know, university places are much more difficult You need to look at ways of saving more people." to obtain. Anne, Teacher I would very much like to become a primary school teacher as I love to work with, help and shape the "David Cameron, generally I'm not into politics "I think schools need to be more equipped with minds of children and I wouldn't want my cancer Keep Mifamurtide much myself but here's one thing I do have to say. handling pupils with cancer.. I was tormented, name- diagnosis to result in this not being able to happen." I think in order for you to be a great Prime Minister, called and basically laughed at for having the C word. funded - it could and be remembered, you need to stick by cancer pupils need to be taught; even though we are going Rebecca (Becky) , 18, patients, stick by the charities for cancer, and find through this treatment we are still normal and should diagnosed aged 17, with Hodgkin’s Lymphoma be saving my life! a cure. because then, if you put enough money into be treated the right way." it hopefully you'll be able to save a million lives, and I will be eternally grateful. So support us because we Danielle, 21, diagnosed with Non-Hodgkin’s Lymphoma "Raise disabled “Raise the need you." six years ago, now studying at Nottingham Trent University living allowance." rate of DLA.” Ruth, 20, diagnosed aged 18 with Osteosarcoma
24 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 25 CONCLUSIONS
The views of teenagers and young adults with cancer and their families • Every Principal Treatment Centre or equivalent across the UK has a in this report show that they are concerned about misdiagnosis, the kind teenage and young adult unit. of services they will have access to, and the impact of cancer on their lives when they try to resume life as normally as possible. 3. Early recognition and investigation of the signs and symptoms of cancer in teenagers and young adults They deserve the assurance that all that is possible is being done to • Introduction of a three strikes approach – a GP will automatically address their concerns and bad experiences. refer on a case if a young person has visited three times with the same unresolved symptoms. We call on the UK Governments to work with us to improve the outcomes and lives of teenagers and young adults with cancer and • Training and information for GPs and health professionals to improve their families. awareness and understanding of cancer in young people. • Availability of effective diagnostics for GPs to speed up investigation In the next three years we want to see: of symptoms.
1. High quality services, specialised for teenagers and • Education for all young people about cancer, forming part of the young adults National Curriculum and the Curriculum for Excellence to ensure all young people are empowered to speak up about • Every country in the UK to have national standards of the specialised health issues. care for teenagers and young adults, and that these are monitored and implemented. 4. High rates of survival and support for teenagers and young • Patient reported outcomes measures (PROMs) are developed adults surviving cancer and implemented for this group so services are meeting the needs • Accurate recording of teenagers and young adults with cancer, of patients. including late effects and ongoing needs.
2. More specialised services for teenagers and young • Research on the impact of having cancer on education and work adults with cancer across the UK experiences, developing support models to best support young people surviving cancer continue their lives. • Clear guidance and protected financial investment in developingthe services needed to ensure every young person with cancer has access to specialised care.
26 | Young Voices - Transforming the lives of young people with cancer APPENDIX
FIND YOUR SENSE OF TUMOUR MESSAGES ON WHITEBOARD, APRIL 2011
• Hospital Food x 5 ‘it’s terrible’ - ‘not nice’ • We need more financial support for students who want to continue their studies while not at uni. • We need fun and good food • Teenage Cancer Trust wards for everyone, everywhere please • Badly staffed wards not enough trained nurses • If you don’t have health, you don’t have life • Hey Mr Cameron - honestly pour some money into cancer research for young people - lost too many friends • Parliament should respect our rights
• More teenage wards • We need to know more about cancer before and after treatment
• Babies screaming at 3am along with drip stands bleeping = unhappy • Teenage Cancer Trust and what it does should be available for and tired teenagers everyone and soon
• Raise disabled living allowance • Petrol costs too much
• More specialist help for young people • Get out of the EU
• More help for carers • What is more important, fighting cancer and having a healthy life or budget deficit?
28 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 29 MESSAGES ON PAPER
• James, 18, diagnosed with Anaplastic • Jadi, 23, diagnosed with Breast Cancer • Dear David Cameron Large Cell Lymphoma All I wanted to stress is that I hope all the cuts being made to the My message to you is a complaint about recent NHS and education The only way to make progress in something as complex and NHS are the right ones and that this won’t cause any interruption cuts. People in the country you run depend on the NHS so cutting frustrating as oncology is to find the solution. Why isn’t more money to the treatment and care that is given. funds makes no sense - you may have the money for private care. being pumped into cancer research? Although the political theatre But most of us don’t especially with higher VAT and £9,000 for uni is somewhat entertaining on a Wednesday afternoon, I find the My experience of the NHS is a good one - the care and support and cutting ESA is just wrong. soundbite “we inherited from the party opposite” wearing rather I have received is second to none. I hope that this will continue, thin. Increased government spending, that is done effectively, is the not just for me but all the other young cancer patients I have met You’re greedy you take from the poor and give to the rich. only way to improve cancer care. Cancer is a terrible outcome for and who are still undergoing treatment - like me. any adult, let alone a child. More so, than a banker who looked at • Wow, what a question, I have no idea off the top of my head and the balance books in 2009! Cancer is a fight you don’t want, need or I would love to see the government supporting causes like Teenage would have to think about it for a while. I would like to definitely deserve! I just wish more money would come from the government, Cancer Trust and Clic Sargent as their support and care, like the NHS open his eyes to ‘gods waiting room’ which is my clinic and being the maybe my voice won’t be heard, and maybe you will carry on not is invaluable. Thank you. youngest person by about 40 years as I have ‘Old Mans Leukaemia’, listening but one thing that I will carry on doing is fundraising for being made to pay for IVF and the battles in education I’ve had since cancer charities; I hope you will too. • Jacque, 15, diagnosed with Leukaemia my diagnosis. I would also let him know how amazing us ‘Cancer Kids’ are, and the importance of looking after us properly. • Hollie, 18, diagnosed with Nasopharyngeal Carcinoma Please sort out school taxes. Parents are going through bankruptcy. • In the future please ensure that all young people from the ages of I think current travel insurance prices are ridiculous. I am going on • You are a capitalist that does not stand for social mobility, together 13-24 have some kind of access to appropriate services for young holiday soon and have been quoted on average £3,500. I think if an that is a paradox. Efficiency savings and money goals have no place people and receive the right emotional support both during and insurance group came together and gave insurance at a price, then in public services that is business philosophy. after treatment. Please implement the survivorship guidance that the if the patient didn’t claim gave back half the money, there would be NCSI is working on. It is time to stop young people getting “lost in a lot more people getting the right insurance for their illness. I have • Ruth, 20, diagnosed aged 18 with Osteosarcoma the system”, it’s not all about treatment, people have to live with the had to just go for normal insurance and hope I don’t get poorly as I physical and emotional effects of it too. simply can’t afford it. I think this is a great idea and would go far!! Keep Mifamurtide funded - it could be saving my life!
30 |Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 31 FIND YOUR SENSE OF TUMOUR VIDEO MESSAGES, APRIL 2011
• From what I’ve read about the GP thing, considering I wasn’t • I think as well that emphasising on the money side of things that • I think the NHS is working fine, there’s nothing that I’d rather want to • To Mr David Cameron, I would say you can’t cut the NHS services diagnosed by a GP I think it’s a load of rubbish. Yes they should the cuts that are being made at the moment to the NHS that they be there. for treatment of cancer generally as a start. There needs to be in perhaps do a bit more but I don’t think I’d be here today if someone the cuts being made for the right reasons. That it’s not going to my opinion more money spent on the research especially for people hadn’t diagnosed me, that wasn’t my GP. But I think you can only jeopardise the quality of care and support that’s given, because • Better people you can interact with, better nurses, better units that are relapsed like myself, instead of focusing on the majority reform so much, and if he cuts too much and things change too much its second to none like where I’ve been treated at City Hospital in making you feel like home rather than feeling in hospital. percentage of people that are cured. You need to look at ways of and it just will go back to an awful state. I think you’ve just got to be Nottingham and I just hope that it’s going to carry on and that it saving more people. careful that’s all, just be careful David Cameron that’s all. Just don’t won’t affect the quality of care and support given. • David Cameron, you should come on a date with me to Nottingham do anything you’re going to regret later on and then complain about City Hospital and you should experience life as an inpatient for a • Get the food sorted out, how difficult can it be to sort out food. Why it. And stop blaming the other government, seriously. • More funding. young adult yourself. And you know get in there, experience it for can’t people see that food should be used as a medicine and not just yourself. Seriously you want to try the baked potatoes because you for the sake of it, instead of giving us slop that’s disgusting, that isn’t • Please don’t cut nursing staff because it’s so important. Publicise • The most important thing to me in the NHS is the blood bank won’t believe it, you just really won’t its shocking. You need to live going to make anybody feel better. Do something worthwhile. It can’t charities like Teenage Cancer Trust and Samaritans more because because without access to that I would be not here, dead. And the it man. Honestly any time just give me a call and I’ll happily show be that difficult, surely. it’s a needed thing and shouldn’t be run by a charity. treatment that the NHS provides that I am allowed to access through you around. Teenage Cancer Trust is the best kind of treatment I could ever • Also don’t cut youth wards, Teenage Cancer Trust wards, don’t stop • Get more people out there knowing that there is actually child imagine and it’s unlike anything anywhere else in terms of getting • I think everything’s really perfect on the oncology wards in the NHS installing those units. Give people the opportunity to spend time cancers and teenagers with cancer, and get it more promoted out in ill there is no other kind of treatment that matches what Teenage especially with help by Teenage Cancer Trust. But one thing that together instead of sticking young people on an old persons ward, it the world because there are a lot of people out there who don’t really Cancer Trust does so keep it in the NHS. I would improve which will be the food which is given to patients, doesn’t work, we need to be around like minded people. Give us the know about children’s cancer and it’s not promoted as much as other maybe more variety. Of course we get variety of the food, but I think opportunity to do that. Don’t take away things that we need, services cancers like they have breast cancer day and lots of days to raise • Please build more hospitals for other kids that can’t get into them. it should be a wider range so the patient has more things to choose that we need. It’s important that we recover and that we get more awareness and money for the research in adult cancers and really to eat everyday. people back to health and back to recovery. Taking away important it’s getting more common in children cancer. On my ward there’s 4 • Better hospital food. services and research services, taking away nurses that can have the people getting diagnosed a week with cancer now. So it really needs • I’d like to tell David Cameron, that we are teenagers we’re not one on one with patients is not the way to do it. Please don’t do that, • I think there should be more Teenage Cancer Trust wards, instead promoting more and more background and research and money children, and we do understand adult things and that the NHS please help to save more people. That’s what Teenage Cancer Trust of if you’re either with old people or in a paediatric ward with really going into it. is not the best of company and it needs to be sorted. are trying to do. Please join us in doing that. young people. So yeah, that would be quite cool Mr Cameron, and apart from that, that’s it for now. • I would tell him that he’s being silly with the way he chooses to spend his money about some cancer drugs and that he should rethink the way he treats teenagers across the country.
32 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 33 FIND YOUR SENSE OF TUMOUR VIDEO MESSAGES, APRIL 2011 (continued)
• I’d say I wanted to be treated more at home rather than at a hospital. • David Cameron, what I want to say to you is I hope you never have • Mr Cameron, first of all I appreciate the very hard job you’ve got to • Hi David, I think that the way young people with cancer were treated It doesn’t make you feel as normal as everyone else and the same as to go through what we’ve had to go through. I hope no one in your do. £168 billion is a lot of money that needs cutting, or needs to be under the Labour government before you, I think that worked just everyone else. Just because you have an illness doesn’t mean you’re family has to go through what we’ve been through. But let me tell paid back. If I was in debt myself, I would reduce my lifestyle. I’d stop perfectly. With regard to the NHS, I personally think those cuts any different to anyone else. you it’s something that really needs support and it’s something that drinking this stuff, and start paying back my debts. That’s what you should be made elsewhere. Maybe in regards to military spending, is beyond anything. You know to have your life threatened like this, need to do for the country. People don’t seem to understand or not military because I know those guys are doing a tough job. But • Better GPs. to have such horrible treatment, and to have such terrible things. that, and I know you’re getting a lot of bad press, but stick at it. you can make cuts, you’re like building 5 new war ships what’s the And I think Sam sums it up by saying, you know, you’d make yourself One thing I will say is that cancer, particularly among young people, point of that. Like we don’t need them, you know. I mean the... is just • For less people getting diagnosed and for more cures. a great Prime Minister if you support Teenage Cancer Trust or any is something where if cuts to the NHS need to be made in that area, rubbish at the moment and we could do with a lot better situation. sort of cancer charity because it’s a horrible horrible disease. To take then maybe in paperwork or in bureaucracy, something that won’t I just don’t think the NHS is the place to make cuts, the NHS has done • I want the NHS to be more focused to people’s needs. Because on something as nasty as that and win. It’s in your hands and I think affect the patients themselves. Because they really value what they fantastic for me, like, I was treated between the switchover and I when I was having chemo and radiotherapy I was never being treated you can do it. have already and people like George really do find that children’s think that the way the Labour government handled the NHS was very with anyone that was even similar to my age and what I was going ward just really weren’t suitable. very good and I can’t see many improvements you can make. Thanks. through. Everyone who was having chemo at the same time I was So support us because we need you. having chemo that were like 40 or 50 years older than me. And • They weren’t suitable because I was being kept up all night by babies • We need better food. every week I went into chemo someone else had died, like old fellas • I think David Cameron should do more for Teenage Cancer Trust. screaming or constant beeping of the drip machine. And it just on the same ward as me. It was just too hard to deal with, everyone Buy more new equipment to save people’s lives. Get more scientists. wasn’t good and I’d never really met other teenagers until coming to • Raise the rate of DLA and decent hospitals. else’s emotions when I was trying to deal with my own emotions, Get cures for cancer. And everyone to completely stop cancer. Teenage Cancer Trust or having the hospital meeting. We’ve got 10 but it just wasn’t happening. There was no one really specialised in seconds so we have to say goodbye, I’m sorry. There’s more I’d like • We want you to help parents more. young people. I was being treated like I was 50 or 60 years old which • I feel David Cameron should put more money into the Teenage to say to but, oh well. obviously I’m not. Cancer Trust, and just develop more wards for younger people instead of being on adult wards; I know it can feel a bit intimidating. Congratulations, I hope you do a good job. Take care. • David Cameron, generally I’m not into politics much myself but here’s Get more drugs, and not cut back. People need these drugs to one thing I do have to say. I think in order for you to be a great Prime get better, no matter how much effort and time or money it takes. Minister, and be remembered, you need to stick by cancer patients, Because money’s not everything you need life. You need life is more stick by the charities for cancer, and find a cure. Because then, if you important than money. put enough money into it hopefully you’ll be able to save a million lives, and I will be eternally grateful.
34 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 35 EMAIL MESSAGES, SEPTEMBER 2011
Anne, Teacher The way I was diagnosed could be viewed as quite unique. However, despite this I should not have gone through the horrific ordeal Hannah, 20, Devon (currently living in Aldershot studying After noticing I had a huge lump on my throat I went to the doctors. before my diagnostic. If the doctor had simply sent me for an x-ray then to be a children’s nurse). Diagnosed with Acute Myeloid Dear Teenage Cancer Trust, The doctor told me I had adult croup and to go home to inhale steam. I would not be mentally scarred as much as I am. Something needs to Leukaemia in 1999. So I did, but it did not improve my breathing. I was practically struggling change to see a quicker diagnostic; no-one deserves to go through what As a teacher of a student who was a cancer survivor and as a mother of for breath walking up a couple of stairs! My parents still concerned, so me and my family did that night. Cancer, whether you have a tumour or a blood cancer like me, it was a teenager who has just finished treatment - it is really important that the next day my dad took me to Nottingham Queen Medicals centres never something you expected to get, I was young but I can remember David Cameron waives further education fees for students who go over A and E. Again the doctors didn’t seem bothered about the lump, this Also I think schools need to more equipped with handling pupils with so much. The treatment is evil. I can say I have survived cancer which 19 years of age and lose out on education and then return to college to time diagnosing me with ASTHMA! cancer. I was tormented, name-called and basically laughed at for is amazing but sadly I have had friends who have not. face high fees. having the C word. So I went home, began using the inhalers I had been eqipped with. Though I survived cancer this has come at a price. Late Effects. Yours They seem pointless; they did not help at all! That night I went to bed Pupils need to be taught; even though we are going through this If growing up in your teens isn’t hard enough I had to deal with the late Anne Lean relatively early, I woke up a couple of hours later and went downstairs. treatment we are still normal and should be treated the right way. effects of my treatment, the hardest part being told that I most likely I remember I had just had a horrific nightmare, which was very abnormal will not be able to have children this I am still unsure of today. I would for me ( to this day I remember this nightmare). My Dad said I would Furthermore, I think more aftercare could be provided by the NHS. probably look different if I had never had cancer been taller and had be fine so I went back to bed as I had school in the morning. A couple During my treatment I had to take steroids to shrink the tumour. This bigger assets but at the same time it would have not made me the Danielle, 21, studying at Nottingham Trent University, of hours later, I jumped up gasping for air! I literally could not breath, increased my weight horrendously, I began my treatment at 66kg by person I am today. I feel there needs to be better care for people like me diagnosed with Non-Hodgkin’s Lymphoma my dad ran upstairs trying to help me and I just collapsed outside my the end of my steroids I was 94kg. It has taken blood, sweat and tears who had cancer when they were younger but now suffer from the late 6 years ago bedroom. I stopped breathing, my heart stopped. My sister who was 12 to finally shed all this weight! I have spent a ridiculous amount of time effects of the treatment these last longer than people think and though at the time could see this from her bedroom. My dad knew First Aid and at the gym, controlling my eating and basically changing my whole they do not always show on the outside like the treatment for cancer it Hello luckily bought me round after my heart stopped several times. If it was lifestyle. I endured all this by myself, no help. I feel I would of benefited can hurt on the inside and I feel this is forgotten. Transition into adult not for him, I would not be here to tell this story. I was rushed to hospital from advice on how to lose the weight, what time of exercises and what services needs to be a lot smoother, it is difficult when you have been in I was diagnosed with Non-Hodgkin’s Lymphoma in February 2005. I was and spent 5 days in P.I.C.U, where after being admitted on a children’s food I should eat. At the end of the day I did not put on weight because children’s services for so long to move into adults. Doctors and nurses treated at the Queens Medical Centre in Nottingham and my treatment cancer ward was told the worse news possible. of the reasons most people do. My weight increased because if I did not from adult services need to be more understanding, there should be lasted 2 years. take the steroids I would have died. more services available for people like me and our age group. The team at the Queens Medical Centre were amazing and my Professor David Walker enabled me to fight this horrific disease.
36 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 37 EMAIL MESSAGES, SEPTEMBER 2011
Karen, Mother I am not a patient myself but my older sister, Morvern McDonald, Lucy, 17, Somerset, Hodgkin’s Lymphoma Nilani, 14, Bromley, Kent, diagnosed with an Adrenal Tumour I believe you are acquainted?, has ovarian cancer. It has been an March 2010. My beautiful daughter died in June this year from cancer after a extremely long, hard and trying journey for her but also for us, as her Dear Mr Cameron, two year hard and difficult battle which involved over a year of family. In the beginning, when she was having her operations, she was My name is Lucy, I am 17 years old and from Somerset. I was diagnosed chemotherapy and numerous operations. She was looked after in a in the Royal Alexandria Hospital in Paisley and Glasgow's Royal Infirmary with Hodgkin’s Lyphoma in March last year, and treated at Musgrove I was diagnosed with cancer in December 2010. It's been a very difficult Teenage Cancer Trust unit. Prior to diagnosis it took over 6months for in the gynecological wards which are mostly populated by older women, Park Hospital in Taunton. At first my family and I had to travel to Bristol 9 months for me and my family. I felt we were supported very well by her to get the appropriate treatment as at the beginning her GP refused and, as she is only 24, she found it very hard to be in their company for my first cycle of chemotherapy as they were unsure whether my the NHS and the charities that helped us during this hard time; CLIC an simple xray request. She was then seen on numerous occasions by 24/7. She felt that the other, older, patients' conversations were of local hospital could participate in the medical trial. Fortunately I was Sargent, Teenage Cancer Trust and Teens Unite Fighting Cancer. different health professionals who did not think to do one either. These subjects irrelevant to her, so, imaginably, she felt very isolated and able to have my further three cycles of chemotherapy and numerous young people are not listened to. The fact that she had never attended out-of-place. sessions of radiotherapy at Musgrove Park, to avoid the tiring travel to a There is however one problem that must be addressed to improve the her GP apart from routine childhood vaccinations, should have been from Bristol, which didn’t allow us to continue with our lives as normal. way in which young people are made to fight this traumatising illness. enough for someone to realise this was a person who didn't complain The Teenage Cancer Trust allows her to meet people her age and I feel it is very important that every teenager and their entire family, are for the sake of it. I would urge that early diagnosis and treatment is socialise during treatment, and makes the time she spends in hospital I found that once I had decided to be treated at my local hospital, the given psychological support whilst facing cancer. It is simply impossible essential and that needs to come from the GP. Late diagnosis and less daunting. Currently she is being treated at the Beatson Oncology information and support decreased. Although I can’t fault the support I to expect a young person, who has so many things to worry about, allowing young people to suffer is a terrible injustice. I feel my daughter Centre in Glasgow, and, because of the Teenage Cancer Trust, she received from my local hospital, by comparing my experiences to those including academic work, the carelessness of friends' comments, to try was let down in the worst fashion. doesn't feel as nervous or anxious as the nurses are extremely friendly who were treated at Bristol Children’s Hospital, I seem to have missed and cope on their own. NHS funding for this service to be knitted with and understand how important it is to make patients' time in hospital out on some things. In the South West in general I feel like there is not a general oncology treatment is vital. Psychological service is available, as normal and 'homely' as possible. lot of support for young people with cancer, and the lack of a Unit in the but a closer and continuous support is needed. region makes me feel as though we are somewhat forgotten, as we have Kirsty, 15, East Kilbride, South Lankarshire I hope you understand the need to allow the age limit of the Teenage nowhere to go specifically. I was treated on a children’s ward, which was The general awareness of cancer needs to be improved as well, it can Cancer Trust at 25 to remain so, because if it is lowered to 19, she would not always suitable. be very difficult for the friends of a patient to know how to deal with Dear Mr Cameron, loose out on all of the benefits that the Teenage Cancer Trust bring, the situation, one way this can be done would be to discuss it in PSHCE and the support the deliver, not just to patients, but to families as lessons which take place in all schools. My name is Kirsty McDonald, I am 15 and I live in East Kilbride, South a whole. Lanarkshire. I am writing to emphasise the importance of the Teenage I hope you can help us. Cancer Trust in the lives of teenagers and young adults who have been Regards, diagnosed with cancer. Kirsty Thank you, Nilani
38 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 39 EMAIL MESSAGES, SEPTEMBER 2011
Paris, 16, from Leicester, diagnosed with Papillary Mairead, 25, from Glasgow. Cancer: they are still unsure... It A lot of the nurses I encountered were amazing-particularly in the Rebecca (Becky), 18, diagnosed aged 17 with Hodgkin’s Thyroid Cancer is being called a non-gestational chorio carcinoma (in bowel, Beatson. However, when I was in Charing Cross hospital over Christmas Lymphoma in October 2010 mets in liver). I was treated for a germ cell tumour (had I did not have a good experience. Staffing levels were very low and I was I so far have undergone two course of radioactive iodine treatment chemo from June-Aug 2010, op in Oct 2010, two rounds of hi regularly made to feel like a nuisance. My mum and my sister (who is a I was treated on an adult chemotherapy ward which is very small at (I131) for thyroid cancer which I presumed I would have had in my local dose in Dec 2010 and March 2011) student nurse) did most things for me ie changing my bed, dressing my Ipswich Hospital as the Teenage Cancer unit in Cambridge was too hospital. I ended up having treatment 102 miles away from my home in hickman line, helping me shower. far for me to travel (and also I wasn't given the choice of where I was London. Even though Leicester hasn't yet got a Teenage Cancer Trust Firstly, I would like to raise the issue of delays in diagnosis. I went to to be treated) I found it very difficult to be treated on a small adults unit and the hospital in London does, I still felt like it wasn't worth the my GP five times before they started taking me seriously. I wasn't eating The nurses administered my chemo and gave me my drugs (which were ward as I found I was being stared at by the older patients and it was travel as I didn't even get treated on the actual Teenage Cancer Trust very much and unable to go to the bathroom and they kept sending me always late). I understand they were very short staffed but I do not think very unnerving to be the only person without grey hair being treated, ward. Unfortunately Leicester (Leicester Royal Infirmary) doesn't offer off with laxatives. My mum is a GP and it wasn't until she got involved this is an excuse. I've also noticed in hospitals that there is no sense (however the chemotherapy nurses were excellent and I cannot fault this treatment to children but does to adults. If I was much younger I that they decided to scan me. I felt they were just fobbing me off and of urgency-there have been so many days I've been sitting in waiting them on their work in any way, shape or form). I found it extremely could probably understand the decision much easier, but I generally couldn't be bothered listening to me. rooms for hours, which isn't much fun! For me, these were my main difficult suffering from cancer and to deal with it in general as I never would say being 16 I feel grown up enough to have treatment in a local problems that I feel need to be addressed. thought it would happen to me. In fact, when I felt the lump growing hospital in a adults unit. Even though I know it's all in my best interest My tumour produced the HCG tumour marker which meant I tested in my neck (and even when it was becoming more noticeable as it to be sent for my treatment in London, I couldn't help but wonder there positive on a pregnancy test. I knew there was no possibility that I On a positive note, I found the care at the Beatson outstanding became pretty large) I never once suspected it was cancer. Luckily Alice must have been someway I could have had treatment closer to home. could be pregnant and nobody believed me. It was so frustrating. (particularly as I can compare it to other places) and found the nurses Pyne, the girl who wrote the "bucket list" already has your support, During my first treatment I only had one parent with me and found lovely. It was the little things like having a microwave in the Teenage Mr Cameron, so I'm sure you're aware of the cases of teenage cancer, it very hard to go through treatment without all of my close family Another major problem is hospital food. Over the past 18 months I've Cancer Trust room or a nurse having a chat in the middle of the night. however I would really like to raise awareness of teenage cancers as nearby especially my identical twin sister. I think it would be extremely been in five different hospitals and the food has been abysmal. I was I think the Teenage Cancer Trust do such great work and I cannot praise the numbers are shocking once you know them. Moreover, seeing as I beneficially to not just myself but others with the same cancer to have always encouraged to eat well and good and nutritious food-however them enough. It makes me very sad to think others in my situation do never suspected I had cancer and a number of my friends I've gained a hospital able to offer radioactive iodine treatment in every region. no good food was available. A lot of it was very stodgy and not pleasant not receive this care just because they live somewhere else. through the Teenage Cancer Trust felt the same, I would REALLY like to Having cancer isn't just a physical change but dramatically impacts your to eat. raise awareness of the symptoms of cancers especially common ones mental/emotional state. Any changes in which the government could that teenagers suffer with (such as Lymphomas) such as, night sweats, help with would be superficial to everyone! weight loss and fatigue.
40 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 41 EMAIL MESSAGES, SEPTEMBER 2011
Furthermore, I'd like to bring to your attention the direct impact on my for the rest of us. The only thing which made it bearable was having cancer, before I got diagnosed I thought it was only children and middle Sarah, 16, USA Atlanta, Georgia career that my cancer had. I was aware of there being a lump in my neck the teenage cancer trust team bringing me things to do and having a aged to OAPs that got diagnosed as that is all you see in the media in around May/June 2010 when AS level exams are taken and due to the friendly face. To make it as "normal" as possible, I had to sleep next to TV programmes etc. Through befriending Roger Daltrey, I have become active in trying to severe fatigue I suffered (and still suffer from today as a result of my old people who were incontinent who where planning their funerals who help get Teenage Cancer Trust started in the United States, because it chemotherapy and radiotherapy treatments) caused me much trouble had no concept for the the people around them and how it effects other Cancer has changed my life for ever and it has made me a stronger is something we desperately need here. I was treated in an excellent during my exams and therefore my exam results did not fulfill my full people. It was hard to meet people my own age going through the same braver and more confident young women who now doesn’t take Children's Hospital, but it was just that - a Children's Hospital. Sixteen potential and I feel that this should be more acknowledged by people thing as we where on different wards, rooms, or in at different cycles. anything for granted life is so precious. But at the same time I will have year olds don't want to watch cartoons all day and have blocks on the such as yourself as this would lead to universities considering this when, So with out the help of the teenage cancer trust the experience would permanent struggles for the rest of my life my mobility has been made internet. I absolutely love what Teenage Cancer Trust is doing in the UK as you know, university places are much more difficult to obtain. I would of been a lot harder! My whole experience would of been a completely a lot more difficult relying on walking aids wheelchairs other people, and I am doing everything I can to raise money so that once it finishes very much like to become a primary school teacher as I love to work different story if I was on an age appropriate ward, with people I can lifts and downstairs accommodation for the rest of my life. Now due its work there that it can finally move it overseas to the US where there with, help and shape the minds of children and I wouldn't want my relate to. And with staff who wanted to work with the teenage and to the chemotherapy and radiotherapy I have become infertile so that are even more teens with cancer in need of this great organisation. cancer diagnosis to result in this not being able to happen. young adult age group. Me and my family both feel that these wards is another huge step for me and my partner to come to terms with should be made compulsory in hospitals just like children's wards. and we can only hope the funding will be there for us when we are Positive attitudes are everything when you get diagnosed and it is ready to have IVF. Having children has always been my dream and I did made a lot harder when the facilities you are in are not designed for you. everything possible in the time I had to protect my fertility but it failed. Stephanie, 19, diagnosed aged 17, Hertfordshire, diagnosed So I hope you can help put something in place for myself and many over with Ewings Sarcoma (right pelvis) It took me around 6months to get diagnosed with going back to the men and women like me! GP every week they kept on saying it's growing pains or you must of Teenage specific cancer units need to be available all over the pulled a muscle the pains in your imagination, they wouldn't send me Please remember we are all different individuals which are entitled to country which are big enough to hold all the teenage and young for an X ray because they’re too expensive. They also didn't realise that the best possible care just like everyone else. And the teenage units adults diagnosed they are a vital part of the hospital just like my age group would be at such high risk of getting cancer, GPs need to will make the battle to beat cancer a lot easier. separate wards for children why should teenagers be any different! have a regular 3-5year training in new discoveries in teenager cancers in particular because there is the stigma saying this age group puts things I was treated on an adult oncology ward and it was the hardest on to get out of work college or school we are not taken seriously and experience of my life I found having to be treated with adults mainly some people don't have the support or confidence to keep pushing OAPs a lot worse to handle than the cancer diagnosis it's self, you when somethings wrong. And this late diagnosis makes it a lot harder wouldn't put your family through it so how comes it's good enough to win your battle. There isn't enough media coverage about teenage
42 | Young Voices - Transforming the lives of young people with cancer Young Voices - Transforming the lives of young people with cancer | 43 QUALITY ACCESS DIAGNOSIS SURVIVAL
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