Living Well with Chronic Myeloid Leukaemia (CML)

A Guide for Patients Introduction

Being diagnosed with chronic myeloid leukaemia (CML) can be a shock, particularly when you may never have heard of it. This booklet covers a range of topics to help you cope a little better.

Booklet compiled by Flora Melanie Joy Hanni for her valuable Dangwa, Monica Figueiredo, contribution as patient reviewer. Anne Crook, Alison Kyle, Sandra You may experience all of the Gates, Moez Dungarwalla, Anne emotions featured in this booklet, Johnson, Genevie Isaacson, some of them, or maybe none at Andrew Nye, Molly Clavering, all. Experiences vary from person Steve Knapper, Julia Williams, to person. This booklet, and the Sebastian Francis and Caroline organisations listed in it, are Hoffman who also peer reviewed available to help you whatever you along with our Nurse Advisor may be facing. Fiona Heath and Natasha Jones, Hannah Tramaseur, Lizzy Davies, Remember, you can also find Una Farrell, Catia Oliveira, Mary tailored advice for your particular Frances McMullin and Dragana situation by talking to your GP or Milojkovic. We are also grateful to your medical team.

If you would like any information on the sources used for this booklet, please email [email protected] for a list of references.

Version 1 Printed: 05/2019 2 www.leukaemiacare.org.uk Review date: 05/2021 In this booklet

Introduction 2 In this booklet 3 About Leukaemia Care 4 How to interpret PCR results 6 Coping with side effects of TKIs 8 Changes to appearance and body image 14 Relationships, fertility and sex 16 Emotional impact of CML 24 Diet 32 Exercise 40 Fatigue 48 Work and finances 54 Telling others about CML 66 Complementary therapies 75 Mindfulness 86 Glossary 87 Useful contacts and further support 89

Helpline freephone 08088 010 444 3 About Leukaemia Care

Leukaemia Care is a national charity dedicated to ensuring that people affected by blood cancer have access to the right information, advice and support.

Our services has been affected by a blood cancer. A full list of titles – both Helpline disease specific and general Our helpline is available 8:30am information titles – can be – 5:30pm Monday - Friday and found on our website at www. 7:00pm – 10:00pm on Thursdays leukaemiacare.org.uk/support- and Fridays. If you need someone and-information/help-and- to talk to, call 08088 010 444. resources/information-booklets/

Alternatively, you can send Support Groups a message via WhatsApp on Our nationwide support groups 07500068065 on weekdays are a chance to meet and talk 9:00am – 5:30pm. to other people who are going Nurse service through a similar experience. For more information about a We have two trained nurses on support group local to your area, hand to answer your questions go to www.leukaemiacare.org. and offer advice and support, uk/support-and-information/ whether it be through emailing support-for-you/find-a-support- [email protected] or group/ over the phone on 08088 010 444. Buddy Support Patient Information Booklets We offer one-to-one phone We have a number of patient support with volunteers who have information booklets like had blood cancer themselves this available to anyone who or been affected by it in some

4 www.leukaemiacare.org.uk way. You can speak to someone information on our website, who knows what you are going www.leukaemiacare.org.uk, through. For more information as well as speak to one of our on how to get a buddy call advisers on our online support 08088 010 444 or email service, LiveChat (9am-5pm [email protected] weekdays). Online Forum Campaigning and Advocacy Our online forum, Leukaemia Care is involved in www.healthunlocked.com/ campaigning for patient well- leukaemia-care, is a place being, NHS funding and drug for people to ask questions and treatment availability. If you anonymously or to join in the would like an update on any of discussion with other people in a the work we are currently doing or similar situation. want to know how to get involved, email advocacy@leukaemiacare. Patient and carer conferences org.uk Our nationwide conferences provide an opportunity to Patient magazine ask questions and listen to Our quarterly magazine includes patient speakers and medical inspirational patient and carer professionals who can provide stories as well as informative valuable information and support. articles by medical professionals: www.leukaemiacare.org.uk/ Website communication-preferences/ You can access up-to-date

Helpline freephone 08088 010 444 5 How to interpret PCR results

The monitoring of CML is white cells. The hospital may also important for assessing your arrange a bone marrow aspiration response to treatment. Your and biopsy at diagnosis, and response to TKI treatment will this looks more closely at the help the haematology team chromosomes of the dividing manage your CML, and allow CML cells. The chromosomes appropriate changes in your CML contain long strands of DNA treatment, if required. It is very which control the behaviour and important to take your tyrosine properties of the cells. In CML, kinase inhibitor (TKI) medication chromosome 9 and chromosome as instructed by the haematology 22 exchange material giving team. Missing TKI medication can rise to the Philadelphia be detrimental to your overall CML chromosome. A special technique care. Attending hospital clinics called karyotyping can identify as planned by the haematology the abnormal Philadelphia team will aid doctors in charting chromosome. This technique can your progress at important time also identify other chromosome points. changes in addition to the Philadelphia chromosome At the diagnosis of CML, the abnormality. haematologist will arrange a full blood count. This test checks the Blood samples taken at the haemoglobin, white cell count diagnosis of CML are sent to the and platelet count. When CML laboratory to perform specialised is first diagnosed, the white cell tests. The quantitative reverse count is elevated, and the platelet transcriptase polymerase chain count can also be increased. reaction (RT-PCR) is a test that The laboratory staff will look at analyses a short sequence of your blood under the microscope DNA. In the case of CML, the test (blood film). The blood film shows compares the ratio of abnormal lots of mature white cells called BCR-ABL1 gene transcripts neutrophils and also immature (associated with the Philadelphia

6 www.leukaemiacare.org.uk chromosome) to the normal The RT-PCR test is very sensitive version of the gene. This baseline and can detect low levels of result enables monitoring of CML disease. This test can detect at specific time points during TKI 1 CML cell in 100,000. If there therapy. is a reduction in disease by hundred-fold, this is equivalent The European Leukaemia Net to a cytogenetic remission (no (ELN) 2013 guidelines are Philadelphia cells in the marrow). the standards by which the The ideal response to treatment haematology team will make is when the CML disease level decisions on your response to falls by 1,000-fold, this is known TKI therapy. The ELN response as a major molecular response criteria assesses your response (MMR). The fall in the RT-PCR to TKI therapy at three, six, 12 is not judged from the level and 18 months. At three months, at diagnosis of the individual it is generally expected the full patient, but to an International blood counts will normalise and standard which is expressed as the spleen will be of normal size. an International Scale (IS). The Every three months, a sample RT-PCR test can detect disease will be sent for RT-PCR to monitor levels as low as a 100,000-fold the BCR-ABL1/ABL1 ratio. The reduction from diagnosis. This haematologist will interpret is important to bear in mind, as the BCR-ABL1/ABL1 results and studies have shown CML patients advise accordingly regarding with deep responses to treatment any changes in medication, for a certain period of time can dependent on the guidelines. potentially stop TKI therapy after If the results show a failure of discussion with the haematology response, then your doctor will team. This is called Treatment change you to another TKI therapy Free Remission (TFR). and check for mutations which could have potentially stopped the TKI from working.

Helpline freephone 08088 010 444 7 Coping with side effects of TKIs

The tyrosine kinase inhibitors If you are a man with newly (TKI) are usually well-tolerated diagnosed CML, you will be offered and rarely cause severe side the opportunity for sperm storage. effects (grade 3 or 4 toxicity). If you are a woman, your doctor They are targeted drugs which will reassure you that fertility is means they eliminate the CML not recognised to be impaired. You cells expressing BCR-ABL. It is can discuss this further with your important to take the medication doctor. For more information on as directed by the haematologist relationships, sex and fertility, go in charge of your care. Prior to to page 16. starting the TKI therapy, you will The TKIs can cause general side be given information leaflets effects such as tiredness and about the specific TKI your lethargy, abnormal liver function, haematologist is proposing to skin rashes, muscle aches and start. A consent form listing joint pains, headaches, changes the potential side effects of in bowel habit and a fall in blood the specific TKI will usually be counts. These side effects are provided. Your doctor will explain mild and are measured as grade 1 the common, uncommon and or 2 side effects. If necessary, they rare side effects. If you experience can sometimes be treated with symptoms which are affecting medication. your quality of life when taking TKI therapy, then contact the Imatinib haematology team and your CNS. Imatinib is the most common Viral testing for hepatitis B TKI prescribed in the UK. Side is always performed prior to effects usually occur in the first TKI therapy. If you have had a one to two months, though there previous hepatitis B infection, are some long-term side effects then the doctor will recommend associated with imatinib. screening to reduce the risk of the hepatitis virus from reactivating. Fluid retention can be a

8 www.leukaemiacare.org.uk troublesome symptom in up to the eye), eyelid swelling, dry eyes 2.5% of patients on imatinib. This and blurred vision. It is important can sometimes be treated with to discuss these with your doctor. diuretics, and regular weight Imatinib is not thought to be measurements can help guide associated with an increased risk treatment response. Fluid buildup of bacterial infections in the form around the eyes (periorbital of respiratory and urinary tract oedema) can also be an issue, infections if the white cell count but, again, can sometimes be is not low. If you have fevers, responsive to diuretics. If the it is important to contact your fluid buildup around the eyes is haematology department. Viral difficult to control, the dose of TKI reactivations such as hepatitis B may be altered or another TKI may can also occur while on imatinib, be required. particularly if there is a past Muscle cramps, joint pains history of hepatitis B. Responses and general bone pain are also to various vaccinations against side effects of imatinib. Muscle influenza and bacterial infection cramps can be frustrating (pneumococcus) can be less and affect your quality of life. effective while on TKI therapy. Live The doctor will check your salt vaccines are not advised, and if levels in the blood and restore necessary should be discussed deficiencies if present. Simple with your doctor. pain relief and tonic water or Skin rashes can occur while on occasionally quinine can also be imatinib treatment. Skin rashes helpful to treat the cramps. can be treated with steroid Symptoms affecting the eyes creams, antihistamines and oral are common with imatinib. steroids if necessary. If the rash Imatinib can be associated is severe, the imatinib will be with conjunctival haemorrhage stopped temporarily. The doctor (bleeding into the white section of may decide to restart the imatinib

Helpline freephone 08088 010 444 9 Coping with side effects of TKIs (cont.)

if the skin rash improves. Imatinib tests, and your doctor will be associated photosensitive skin regularly monitoring the liver reactions have been reported, function. Imatinib rarely causes but, regardless, avoiding direct severe liver abnormalities but, sunlight and using high-factor if there are significant liver sun protection is recommended. abnormalities, the liver tests usually recover once imatinib is During treatment with imatinib, stopped. the haematology team will monitor your full blood count. While on treatment for imatinib, Imatinib can cause a reduction in your doctor may check your the red cell count (haemoglobin), thyroid function if you have white cell count and platelet symptoms of low thyroid levels. count. Your doctor will closely In female patients, imatinib may monitor the blood counts and adversely affect a pregnancy and the imatinib may need to be the foetus. Foetal malformations temporarily stopped if the blood have unfortunately been counts fall below a certain level. documented with imatinib use. Your doctor will then decide It is therefore vital to discuss whether to restart at a lower dose. with your doctor when it is safe Nausea, vomiting and abdominal to consider trying for a baby. discomfort are all recognised side Safe and effective contraception effects of imatinib. Nausea can is important while on imatinib. sometimes be reduced by taking Imatinib will be stopped while you imatinib on a full stomach or try to conceive. Imatinib is found during the meal. Anti-sickness in breastmilk, and it is therefore and anti-indigestion medication recommended not to breastfeed can also be helpful. while on imatinib. Imatinib has been associated with reduced Imatinib is mainly metabolised sperm counts in males but, more (broken down) in the liver. It can recently there has been less cause abnormal liver function

10 www.leukaemiacare.org.uk concern regarding male fertility, may need adjusting, and your which your doctor can discuss doctor may decide to give you an with you. alternative TKI. Nilotinib Nilotinib can cause heart rhythm disturbances. Your doctor will Nilotinib is associated with an arrange an ECG to be done prior increased risk of arterial blood to starting nilotinib to ensure clots in the lower limbs and this medication is safe for you, coronary vessels and an increase as certain heart rhythm changes in lipid and glucose levels. It is may prevent you from taking important to reduce the risk of nilotinib. arterial blood clots by prevention and early detection. It is advised Liver abnormalities, including to try and stop smoking, and abnormal liver function tests, good blood pressure control is can occur while on nilotinib. encouraged. This is achieved by Depending on the severity of the monitoring your blood glucose, abnormal liver function tests, cholesterol and blood pressure nilotinib may be temporarily regularly. If angina develops withheld or stopped permanently. while on nilotinib treatment, a Rarely, nilotinib can also be cardiologist will help control associated with inflammation of the symptoms and optimise the pancreas, especially if there is your heart medication and your evidence of abdominal discomfort haematologist may recommend and high amylase levels. that you switch TKIs unless there Nilotinib, like imatinib, can rarely is another alternative. While cause headaches, infections, on nilotinib, the blood sugars nausea and change in bowel can increase. If you have pre- habit. Skin rashes and itching are existing diabetes, it is important common on nilotinib. to monitor your blood sugars as your diabetic medication doses

Helpline freephone 08088 010 444 11 Coping with side effects of TKIs (cont.)

Dasatinib Bosutinib Dasatinib can be associated Bosutinib can cause diarrhoea with minor buildup of fluid in the soon after taking the medication. lungs in up to 28% of patients. Diarrhoea can still be problematic However, a small number of in some patients for some time, patients treated with dasatinib but loperamide is helpful to treat have continued gradual lung it from the outset. fluid buildup, called a pleural Bosutinib can also cause a fall in effusion, and can occur at any blood counts, infections (if the time after dasatinib treatment. blood counts are low) and skin The fluid buildup is usually not rashes. serious. However, in some people, it can cause dry cough, shortness Ponatinib of breath and reduced exercise tolerance. If the pleural fluid is Ponatinib can cause an increased causing symptoms, then the risk of blood clots in the arteries dasatinib will need to be stopped, (thrombosis) and veins. The risk and steroids (possibly diuretics) is higher than with other TKIs. may be required. It is important to Thrombosis can develop in lower contact your doctor if you develop limbs and heart vessels. The these symptoms. A chest X-ray risk of this can be reduced by can help to determine if you have controlling the blood pressure, a pleural effusion. It is important stopping smoking, maintaining not to re-start the dasatinib until good diabetic control if you the fluid has resolved. are diabetic, and treating high cholesterol levels. Dasatinib can also cause headaches, a fall in blood counts, Ponatinib has also been skin rashes and infections (if the associated with inflammation blood counts are low). of the pancreas. This can cause abdominal pain and your doctor

12 www.leukaemiacare.org.uk needs to be informed.

Ponatinib can cause a fall in blood counts, infections (if the blood counts are low), liver test abnormalities and skin rashes.

Helpline freephone 08088 010 444 13 Changes to appearance and body image

CML is generally treated with tyrosine kinase inhibitors which tend not to have a big impact on appearance, your body and your body image. However, for those who receive chemotherapy, there may be some noticeable changes.

Weight appetite, fatigue, nausea and psychological distress. Some people may experience weight gain as a side effect of There are different approaches to treatment or a symptom of CML. managing pain. If you experience pain, it can be treated with There are ways to help you painkillers. Other approaches maintain a baseline or good include complementary therapies, weight throughout. These include psychological interventions like screening and assessing your mindfulness, meditation, nerve weight and nutrition status blocks and TENS (transcutaneous at presentation of CML. If you electrical nerve stimulation) used experience extreme weight for blocking pain signals from the loss, you should be referred to nerves to the brain. a specialist dietician, where appropriate. Where pain is not adequately controlled, or there is no response Physical pain from standard interventions, Bone and joint pain is more specialist palliative care teams commonly reported in patients can play a significant role in with CML as this is a side effect managing pain symptoms. of some TKIs such as imatinib. If you need any help in dealing Furthermore, certain procedures with pain, speak to your medical and treatments can be associated team. with pain, including bone marrow biopsies. Hair loss Chronic pain has also been found Hair loss or alopecia is a common to be associated with a lack of and well-known side effect

14 www.leukaemiacare.org.uk experienced by people receiving version of the infection) while high-dose chemotherapy; some are inactive (they contain however, it is not a common dead particles of the infection and side effect of TKIs. In fact, most therefore incapable of causing an TKIs can initially cause some infection). hair thinning, but this normally Live vaccines should not be resolves on its own within six given in general to blood cancer months to a year. patients, but your doctor can You are entitled to a free wig discuss this in more detail. The if you are a hospital inpatient. seasonal influenza vaccine is For more information, go to recommended yearly. the NHS website: www.nhs.uk/ NHSEngland/Healthcosts/ Pages/Wigsandfabricsupports. aspx Infection control The infection rate in CML patients is much the same as the general population. When you have an infection, it can take several doses of antibiotics to bring your temperature and symptoms under control, but antibiotics should offer an effective treatment.

Vaccinations are designed to protect people against infections by priming the immune system. Some vaccinations are live (they are capable of causing a milder

Helpline freephone 08088 010 444 15 Relationships, fertility and sex

Sex life and libido They are present in the body and brain and they can interfere The human and personal in sexual impulses, libido and experience of sexuality varies frequency of sexual intercourse. from individual to individual. It is lived, sensed, experienced, There are also other factors that expressed and communicated can influence and interfere with in different ways, via thoughts, your sex life and libido on a fantasies, desires, beliefs, permanent or temporary basis. attitudes, values, practices and The physical and emotional the way relationships are formed. impact of having a cancer It is related to the way human diagnosis and the side effects beings form emotional and of treatment can have a huge physical bonds. influence on libido, wellbeing and relationships. World Health Organisation states clearly that human sexuality has At diagnosis many dimensions and factors The news of cancer may impact that include sex, gender, sexual your wellbeing and create anxiety identity, sexual orientation, and fear which may lead to a loss eroticism, love/emotional of interest in sex and reduced connection and reproduction. libido. However, while CML is a A great part of our sex life, libido, form of cancer/neoplasm, most feelings and the way human patients will have a normal life beings form relationships is expectancy. influenced by hormones that It is important that you are released in our brains and communicate your feelings and travel through our bodies, emotions with your doctor, nurse having different effects in and partner and not to isolate specific parts of it. Some of the yourself. It’s important that you hormones involved in sexuality involve your partner as early as are testosterone, dopamine, possible in the process. Having norepinephrine and serotonin.

16 www.leukaemiacare.org.uk an emotional support system to express your emotions and whilst going through cancer is feelings. Remember that your important, as well as maintaining first priority is your health, so you connections and a bond with may find alternatives to sexual your partner through the process. intercourse and ways to express Your partner may also wish to your emotions which are as be involved in the consultations valuable as sex. It is important and, sometimes, may help you to to involve your partner along the envisage how to best cope with way. short, medium- and long-term It is okay if during treatment it strategies and plans for facing takes some time to adjust to the future. It is important to have the new reality, and this may in mind that whenever there is a also affect your relationships. crisis in a person’s life such as You might have less interest cancer, having a good support in sexual contact and desire to system helps to overcome have intercourse for a number the difficulties of diagnosis, of reasons. Treatments may treatment and follow ups, as well potentially affect your hormonal as managing and maintaining a system in your body, and/or cause good quality of life. Bear in mind temporary or long-term changes that having your partner in your in your body, which may interfere life can be important, as they are with your body image, your there to help support and nurture wellbeing, your self-image and you. sometimes your mental wellbeing. During treatment It is important that you talk to your partner and healthcare Some treatments may put you professionals as they will able to off of having sex and reduce your provide support. libido and desire for sex. If you are feeling this at the moment, that’s Try to remember that you are perfectly normal and a common not alone in what you are going side effect. There are many ways through. Although it’s always

Helpline freephone 08088 010 444 17 Relationships, fertility and sex (cont.)

different from person to person treatment, your nurse/doctor and it is your own individual may advise you to abstain from experience, there are other unprotected sexual relationships. patients that somewhere along TKIs will affect the development their cancer journey have felt of a foetus therefore avoiding a similar to you. Your healthcare pregnancy while on treatment professionals can help you to get is important; until you seek information and proper support medical advice on this matter. You for your particular struggle, should always prevent a natural if needed. In some situations, conception from occurring these problems may already be before you seek proper advice thought of and foreseen whilst from your oncology/fertility professionals organised your team. Each treatment strength treatment care plan. Reach out to is different, so it is paramount your healthcare team so they can that you ask for individual and provide and/or direct you to the specific advice before making a professionals that can help you. decision to naturally conceive. There isn’t a formula to calculate Contraception the exact date and time when There is no contraindication on you can naturally conceive, but having sex whilst on treatment. you can discuss the timing with However, if it makes you your doctor. Not waiting for the uncomfortable, you and your correct time to naturally conceive partner should respect each may put your baby at risk of other’s decision. Exploration malformation at birth, in the of your partner’s feelings and uterus or other complications sensations can be done via other through life. It is safer to confirm ways and can be as pleasant as with your clinician and discuss sexual intercourse. this issue before attempting a pregnancy. Please talk to your After you start your cancer doctor/nurse/fertility specialist

18 www.leukaemiacare.org.uk before you start planning a family. decision leading up to the due date. Pregnancy and breastfeeding Experts tell us that TKI therapy during the first trimester of Research studies show that pregnancy is to be avoided as it cancer during pregnancy is can cause high genetic anomalies relatively rare. Depending on the to the baby and could potentially stage of the pregnancy when the impact the baby for life or result diagnosis is disclosed, the way a in a miscarriage or still birth. pregnant woman with a diagnosis of CML is treated will vary. Every Nevertheless, it’s always case is different and the whole discretionary and up to your team is involved as well as you team of healthcare professionals and your partner. It is important to discuss the timing of CML that you seek information and ask treatment with you. In some questions about treatment, the situations, it may not be possible impact on the baby and/or when in this period due to side effects, is time to decide to go through so it is important that you always a different route. It is important seek advice from your healthcare that you seek information and team. ask all the questions you want. If you are diagnosed in the last The welfare of the child and its months of your pregnancy, your future will always be taken into doctors will discuss treatment consideration by the team, and options with you, the period of decisions may need to be made, pregnancy and the decision to so it’s very important that you and start treatment before or after your partner are comfortable with delivery. Seek advice from your the explanation obtained, as well consultant and medical team. as feeling confident that you were given enough information in order to be able to make an informed

Helpline freephone 08088 010 444 19 Relationships, fertility and sex (cont.)

Breastfeeding medication you are taking. Always seek medical advice. There are Milk is produced in the woman’s several baby formulas in the breast and released through the market which will keep the baby mammary ducts and expelled by fed and healthy. the nipples.

Whether or not you can breastfeed Fertility after CML your baby will depend on the When facing a diagnosis of CML, treatment regime you are on, the priority is survivorship. but it is not advised on TKI In the UK there are some therapy. Other clinical situations restrictions to all types of fertility may impose a challenge on treatments. Funding for fertility breastfeeding, so seek a medical treatments under the NHS follows opinion from your nurses, strict rules and policies so it midwives and doctors. is important to speak to your Breast milk is still the most General Practitioner and hospital complete food for babies, and it consultant when you are thinking has several benefits which baby of applying for an assisted formulas cannot give. There are conception treatment, if you are other components in breast milk struggling to naturally conceive. which will also help the baby to As soon as possible, you should develop their immune system seek information from both and be more equipped to fight oncologist and fertility specialists infections. In the first few days in order to make informed following delivery, you may be able decisions about fertility and the to feed your baby with colostrum, next steps you should take. the first form of milk from the mammary gland. The NHS funds the IVF (in-vitro fertilisation) and ICSI (intra If you are on long term medication cytoplasmic sperm injection) for CML, you potentially may not treatment for female partners be able to breastfeed due to the with a different amount of

20 www.leukaemiacare.org.uk funding available in each region your haematologist. of the country. With this being Adoption is also an alternative said, for a woman that already when other options are not has one child, or has reached a possible. certain age, it is less likely that funding will be granted. In the Men and infertility event that you are not granted the funding, you may need to fund With some treatments, the cells your treatment privately. responsible for producing sperm can be affected. Therefore, before Women and infertility undergoing TKI treatment, you should discuss the need for Women are born with all the sperm freezing. This would give eggs they will ever have. After you the chance to try to father a puberty, one egg is released each biological child in the future via cycle/month, it travels from the IVF or ICSI (in case your fertility ovary through a fallopian tube is affected during TKI treatment). and reaches the uterus. If this TKIs do not in general affect egg is not fertilised by a sperm, fertility and males can continue the pregnancy will not occur. on treatment when they father a Ovarian reserve is the term used child without any ill effects. to describe the remaining egg supply of the ovaries. For more information about sperm storage go to the HFEA When you are diagnosed with (Human Fertilisation and CML, your fertility is not thought Embryology Act) website at www. to be at risk before TKI therapy, hfea.gov.uk. but your doctor can advise you further. However, once you Changes in have started and responded to treatment, there are options as relationships to when and how you can stop Following the news of a cancer treatment in order to have a diagnosis, its impact can vary family which you can discuss with from person to person as well as

Helpline freephone 08088 010 444 21 Relationships, fertility and sex (cont.)

in their partners and family. You It’s important that as soon should seek as much information as possible you involve close as possible about your treatment family and your partner in the as well as other factors as this process. This will give them the may help to empower you to make opportunity to be involved and be the best decisions regarding your aware of the decisions that are future. being made.

Depending on your CML and An honest discussion is duration of treatment, there will important. You may have loads be a period where you will suffer of thoughts coming through from some physical symptoms. your head about the disease, the Cancer and treatment can make future and about your partner you feel physically ill, cause you and the relationship. It is okay to pain, tiredness, decrease your feel confused and sometimes to libido, and cause you to feel feel afraid and uncertain about it all sorts of emotions. You may all. If you need to when it comes feel weak, unattractive, afraid, to breaking bad news to your feel that your body is different partner, go to page 66 or seek help because of the side effects or from your medical team. based on the fact that you may be Changes in your body can affect losing or gaining weight. Sex can your self-esteem and your sense become the thing that you don’t of feeling desired. Your libido may want to do, or that is something be affected also. that you don’t want to talk about. This can affect your relationship. You may feel more emotional and you may even have difficulties in The libido can decrease as well as processing all the information the frequency of intercourse. that is given. You may need to There will be some changes in ask the same questions many your life, when you are attending time. Feel free to enquire as the hospital/clinics for your many times as you need about treatments. information concerning you and

22 www.leukaemiacare.org.uk your treatment/future.

It is important to talk to your partner and seek support. You are not alone, and you shouldn’t be. There are other sources in the community that offer help. Charitable organisations and your medical/nursing team/ GP can also guide you through other resources available in the community.

Helpline freephone 08088 010 444 23 Emotional impact of CML

This chapter describes some of the more challenging emotional responses you may experience as you adjust to life following a diagnosis of CML. Everyone is different and what follows may or may not apply to you. There is no right way or wrong way to live with CML. As you gradually adjust to this major change in your life you will find what is most helpful and feels right for you.

Feelings is similar to that of the general population. Living with CML can be described as feeling like being on an Hope and emotional rollercoaster ride. You determination have had to face the shock of being told about the diagnosis Hope and determination will help and then the challenge as you you to face CML. Identify your adjust to the CML treatment that reasons to have treatment and is right for you. The knowledge remind yourself of them when you that CML will always be a part feel that you are struggling. Notice of your life brings its own what helps you to feel strong and adjustment. You may experience draw on the support of others. We a range of emotions that can are very resilient beings and with catch you by surprise and may time and good support, you can sometimes feel overwhelming. adjust to this enormous change It is common to feel low, sad, in your life. angry or anxious. Feeling down or worried is a normal reaction Anger and does not mean that you Anger is an emotion that we are weak or failing to cope. Your naturally feel when we are feelings may come and go. There challenged and under threat and may be times when you are not so it is not unusual for illness sure how you are feeling and to provoke an angry response. other times when you feel okay. You may feel angry with your However, it is gratifying to know body for becoming ill in the first that for responding patients, the place. Thoughts like, ‘Why me? life-expectancy of CML patients It’s not fair, I don’t deserve this’

24 www.leukaemiacare.org.uk can make you feel angry. You help you to feel more in control of may be annoyed with healthcare things. This could be setting some professionals and with the lack recovery goals for yourself, doing of control over your life. It may be some exercise or physical activity frustrating that you have to live to shift your pent-up tension or with the side effects of treatment talking through your frustrations such as fatigue or diarrhoea. with someone who is a good listener. Anger makes us feel uncomfortable. Some of us Feeling alone shout and stomp around, but for others, feeling and expressing There are times when living with anger is a struggle. It can be a CML that you may feel alone. physical feeling of restlessness This can be despite having good and frustration and of not being support from your family, friends able to settle. It may leak out as and healthcare team. irritability or impatience with the Worrying about how others might people around us. respond if you tell them what’s It helps to acknowledge your really on your mind, feeling that anger at the time rather than you need to hide your feelings to hold on to it and let it build up, protect others or because they otherwise, it may burst out and may not understand can leave you leave you feeling helpless and out feeling isolated and alone. Feeling of control. Buy yourself some time different from those around you to let the tension go by leaving whose lives are continuing as the room, getting some fresh air, before can be a challenge. listening to some loud music, Loss, sadness and doing something physical or putting your angry thoughts down depression on paper. Try and identify what it The experience of CML brings with is that is making you angry, so it many losses. You might pine you can direct the energy that for the life that you had before comes with anger in ways that the illness, and for the hopes and

Helpline freephone 08088 010 444 25 Emotional impact of CML (cont.)

plans that have been changed will help you to get through the for now, due to the loss of control challenges but it is alright to feel over your life you feel because of low from time to time, particularly treatment. You may feel a sense when your energy is low, or you of loss for the healthy you and experience setbacks. feel sad and vulnerable because Feeling low from time to time of the changes to your body. It is is normal and these feelings normal to grieve for these losses usually pass. But if your low and to feel sad when you think mood persists over a couple of about the impact that CML has weeks, you feel depressed and had on you and those close to you. it is affecting your day to day Give yourself permission to allow life, you may be suffering from these feelings of grief to surface. depression. It can be hard to It is not self-indulgent or weak to separate out the physical and feel sad as you adjust to your new psychological causes, but the reality. feeling of depression is deeper, Sadness can often make our longer and more unpleasant than mood feel low. People sometimes the short episodes of feeling worry that feeling low can affect low and unhappy that everyone how they live with CML or respond sometimes experiences. to treatment. They can put Some of the common symptoms themselves under pressure or are of depression include: encouraged by others to remain ‘positive’ and to ‘fight’ the illness. ••Feeling sad or low, most of the This becomes a way of coping time for some people and it works for them. It is important, though, ••Losing interest or enjoyment in to know that everyone copes in people and things their own way and that you don’t ••Finding it harder to concentrate have to be positive all the time. A or make decisions hopeful and determined outlook

26 www.leukaemiacare.org.uk ••Feeling helpless, hopeless or help books or an online course. worthless Depression can make you feel less inclined to ask for help, so be Feeling restless, agitated and •• guided by those close to you. irritable If you are having suicidal Feeling easily moved to tears •• thoughts or feelings, you can call ••Thinking negative thoughts the Samaritan 24-hour helpline about yourself, the world and on 116 123. www.mind.org.uk the future and www.nhs.uk have further information and links to support. ••Difficulty getting to sleep or waking up very early Anxiety and worrying ••Having thoughts of self-harm or about your health suicide CML brings with it the challenge of living with uncertainty. What Depression does not mean that will happen to me? Will the you cannot cope or are weak. It is treatment work? Will the CML a common medical condition and stay in remission? It is natural there is support available to help to feel anxious when faced with you get through it. You cannot fears for ourselves. Anxiety is like simply ‘snap out of it’ or ‘pull an internal alarm system going yourself together’. off. Being anxious will not affect Talk to your GP or healthcare the CML or harm your response to team if you think that you may treatment. Do ask for support if be depressed. Depression can it is making it difficult for you to be treated with both medication have medical procedures. and talking therapies such as We feel anxious when we feel cognitive behavioural therapy threatened. The brain uses (CBT) and counselling. Your adrenaline to tell the body to run doctor may also recommend self- away from or to fight a danger

Helpline freephone 08088 010 444 27 Emotional impact of CML (cont.)

and this is called the ‘fight-flight often, these ‘What if ...’ thoughts response’. It is helpful when we or images focus on things that need to escape quickly from a could go wrong in the future. physical threat such as a fire, All that worry does is keep our but less helpful when the brain attention focused on the threat interprets stressful life events and this keeps the anxiety going. like illness in the same way. It’s helpful to remember that our Because we can’t physically brain is responding to the threat run away (although we may feel of something that may happen in like it), those same fight-flight the future. It hasn’t happened yet, physical symptoms can persist and it may never happen. and make you feel uncomfortable. When we are faced with a threat It causes that familiar feeling like CML, our alarm system of lying awake at night and the can become a bit too sensitive mind won’t switch off because and lots of things can trigger it’s focused on the threat, and our anxiety and keep it going. with it comes a racing heart, tight We are always on the look-out chest and tense muscles. When for threats. Each pain, niggle, we feel constantly stressed, we clinic appointment or wait for struggle to relax, it is difficult test results can set off fearful to concentrate, and we can feel thoughts about your health. This impatient, irritable and restless. is normal and gradually eases as Worrying is something we do to you adjust to living with CML. Your try and cope with uncertainty. consultant and specialist nurse We try to predict and control will be able to guide you about any future events by thinking about physical symptoms that you need them, perhaps to try and prepare to watch out for. ourselves if the worst happens. If you notice that you are Worry can be useful when it constantly checking for new helps us to take action to sort symptoms, frequently seeking out a difficult problem. But more reassurance from others or that

28 www.leukaemiacare.org.uk you avoid doing things, it may be about the potential benefits of a sign that anxiety is becoming exercise, go to page 40. a problem. If you feel that the Relaxation and breathing uncertainty is making you feel •• exercises can help to calm so anxious and worried that it the mind and release muscle is affecting your daily life, you tension. may find it helpful to talk to your healthcare team. ••Doing an activity that you enjoy can help you to stay in There is more information about the present moment and enjoy anxiety and helpful links on life in the now rather than the NHS website: www.nhs.uk/ jumping ahead in your mind to Conditions/stress-anxiety- predicting the future. depression/Pages/low-mood- stress-anxiety.aspx ••Talking about what’s on your mind to someone who Managing Stress is a good listener or writing You cannot remove the stress worries or thoughts down on of CML completely but there are paper can make them feel less some things that you can do to overwhelming. When we hear help yourself manage when you ourselves out loud, we are more are feeling stressed: able to rationalise and put worries into perspective. We can ••Exercise is an excellent way to ask: "Is this a problem that I can reduce the impact of stress. It do something about or is this could be any physical activity an uncertainty that may never – walking, exercise or dance happen? Am I concentrating classes, yoga, gardening, on negative fears for the future housework etc. It helps us at the expense of hope and to use up some of that extra enjoying life again today?" adrenaline that comes from worrying, helping us to feel ••Mindfulness is a great way to calm. For more information be in the present. It is simply

Helpline freephone 08088 010 444 29 Emotional impact of CML (cont.)

bringing our attention into the counselling can help you to talk present moment and being through your experience to try fully aware of what we are and make sense of it all. Talking experiencing - noticing what to someone you don’t know and is going on using your senses in confidence can be helpful rather than thinking about to understand and process the past or worrying about the feelings as normal responses to future. We are observers of our a difficult situation. Counselling thoughts and feelings, allowing may be available through your them to come and go without doctor or local cancer support getting caught up in them. centre. When we bring our attention Connect with others who have into the present moment rather •• been affected by CML through a than our imagined future, we support group or online forum. realise that we are coping, and Each person’s experience is getting on with life the best we unique, but it can help to hear can. If you have experienced from others who know what it is trauma in the past, mindfulness like to have CML. may not be helpful and so seek advice. For more information ••Do the things that work for you about how mindfulness may be – maintain the activities and able to help you, go to page 86. hobbies that were important to you before your diagnosis and ••Complementary therapies can try to keep these interests going help you relax and feel more if they are not too tiring and you in control, but make sure you are still enjoying them. are seeing a qualified therapist who has experience of treating ••See the people you want to see people with cancer. If you would and talk about what you feel like to know about the types comfortable with. It is fine to of complementary therapies change the subject if you don’t available, go to page 75. want to talk about something. ••Talking therapies such as

30 www.leukaemiacare.org.uk A new normal with those around you helps you feel more prepared for what the A diagnosis of CML for most future may hold. Perhaps you will people will mean living with daily discover that you or those around medication and its possible side you are more resilient than you effects. There will be regular blood ever imagined. tests and clinic appointments but much of life may carry on as A good response to treatment before. With time and support, brings hope for the future, and you can understand, manage and life inevitably takes on a new adjust to living with CML as one meaning. People sometimes think aspect amidst the rest of your life. about what is most important to them in life and make changes for Having a good understanding of the better. As you work through CML can help reduce the stress your process of adjustment, you and uncertainty. Get as much can gradually incorporate all that information as you need from you experience because of CML your clinical team and support into your new view of yourself and organisations. Keeping a diary of your life. your symptoms may be helpful to keep track of side effects to discuss with your team. Managing your condition day-to-day can help you feel that you are taking back control e.g. plan activities so that you can pace yourself to manage fatigue and follow a healthy diet.

Your life may have a very different outlook because of CML. Continue to seek support from those close to you. You might find that making decisions and plans

Helpline freephone 08088 010 444 31 Diet

Nutrition and wellbeing measures to prevent this is to ensure scrupulous food hygiene. With a diagnosis of CML, some aspects of your day to day life What is a healthy diet? may change during the duration To help ensure your treatment is of your treatment. It is therefore as effective as possible, a well- important that you have balanced nutritional intake is information that will help you, or a good starting point. This can someone you care for, to stay as be difficult if you are not feeling well as possible throughout their well and some ideas to cope with treatment. these particular difficulties will be What is neutropenia? covered in this chapter. Treatment for some cancers acts Diet and nutritional intake is to ‘kill off’ the harmful tumour an area where there is a huge cells in the body, and in doing so amount of information available the treatment can also destroy to the public, and unfortunately healthy cells. When this happens not all of it is based on scientific with blood cancers, the protective evidence. It is advised that white cells in our body (called sensible healthy eating advice is neutrophils) which naturally fight followed for all patients and that infection, are reduced by both the no ‘special’ diets are used unless disease and by the treatments. this is recommended by your consultant or a qualified dietitian, Neutropenia occurs when the and forms part of your clinical level of neutrophils falls below a treatment. certain level as a result of your illness. However, patients on long- However, just knowing what term TKI therapy are rarely if ever makes up a well-balanced neutropenic. diet can lead to confusion. The Government’s Eatwell Guide As your neutrophils are much shows that you should try to lower than normal you are at eat foods from all food groups greater risk of infection, including every day and within certain foodborne infections and food proportions. poisoning, and so one of the

32 www.leukaemiacare.org.uk Try to have as many different food with frozen fruit and added stuffs from all food groups as milk can make a high energy this will ensure you get all your drink and are particularly necessary nutrients for good helpful if your appetite is poor. health. Fruit and vegetables will also provide dietary fibre which helps Carbohydrates regulate your bowels and prevent These foods are often considered constipation which can be a side unhealthy. This is not true, and effect with your treatment. you should try to have some starchy carbohydrate at each Dairy foods main meal like porridge, cereals, Milk, cheese and yoghurt are good potato, pasta, rice or couscous. sources of protein and calcium in These foods should make up the diet. If you have lost weight or at least a third of what you eat. your appetite is poor, these foods Wholemeal and wholegrain are very helpful as they tend to be varieties will increase your fibre relatively high in energy and can intake, but white ones are also help to boost your overall calorie healthy foods. Nutritionally, all intake. these foods are very similar and will provide you with a supply of Other protein foods energy throughout the day. (meat, poultry, eggs, Particularly if you are being pulses, peas, beans and treated with imatinib, a lentils, nuts and meat carbohydrate full meal can also alternatives such as help with nausea. Quorn or tofu) Fruit and vegetables Protein is an important nutrient Make sure you have your five as it helps to maintain your portions of fruit and vegetables muscle strength and enables you a day. This can be all kinds of to go about your normal daily fruit or vegetables: fresh, frozen, activities and reduces fatigue. It canned, dried or as juice or is recommended that you have at smoothies. Smoothies made least two portions of protein foods

Helpline freephone 08088 010 444 33 Diet (cont.)

from this group every day, but you between meals. may need to increase this if you In summary, the nutrients each have lost weight to enable you to food group provides are: replace lost muscle tissue. ••Bread and cereals - provide Oils and spreads energy, B-vitamins, iron and The last very small group is for folic acid and dietary fibre. fats and spreads which are used Fruit and vegetables - provide in cooking. General healthy eating •• vitamins A, C and E, folic acid, advice is to use less fat, and dietary fibre and potassium. that the fat you do use comes from healthier unsaturated ••Fish, eggs, Quorn, nuts, fats such as olive, sunflower, soya - provide protein, iron, rapeseed or soya oils. If you B-vitamins, thiamine and B12, need to gain weight it is okay to zinc. use a little more of these fats to increase overall energy intake ••Milk and dairy products but remember that the most - provide protein, Calcium, important nutrient way to regain B-vitamins, riboflavin and B12. lost weight through illness is by ••Fats, oils and spreads - provide increasing protein and overall energy, essential fatty acids and energy intake. fat-soluble vitamins ADE and K. Sitting outside the Eatwell Guide are treat foods such as cake, Neutropenia: what you biscuits, crisps or sweets and need to be careful of chocolate. These foods are outside If you have neutropenia, the the main plate model as they are following guidelines should not essential to health. However, always be considered when they can make an important choosing and preparing food: contribution to your total energy intake and also can help boost Water appetite. A drink of ice-cold milk Freshly drawn tap water and fizzy and a small slice of sponge cake bottled water is safe to use as a makes a good high energy snack drink and in cooking. This can

34 www.leukaemiacare.org.uk also be used to make ice at home. and spore-forming bacteria. Despite its antibacterial Milk, cheese and ice cream properties, it is recommended Milk must be pasteurised or UHT. that honey from the following This applies to all kinds of cows’ sources is avoided during your milk, sheep and goat’s milk, and treatment: raw honey, fresh honey milk alternatives such as soya comb, unpasteurised honey milk. or strained honey. Pasteurised or filtered honey removes fine Similarly, all cheese must be particles of dust, pollen or nectar made with pasteurised milk. and is fine to use. Where possible, This includes fresh and vacuum- use small jars or individual packed cheese as well as portions. processed cheese spreads. You should avoid blue and veined Nuts and dried fruit cheeses, soft mould ripened As long as these have undergone cheese like camembert and feta heat treatment, to kill off any cheese. potential bacteria, they are All commercially available considered safe to use. Therefore, ice cream maintained at the roasted nuts, nut butters, cooked appropriate temperature is fine, dried fruit in tray bakes, flapjacks, so long as it is not allowed to cereal bars or scones are good thaw and refreeze. Do not use soft sources of snacks. scoop ice cream or ice cream from Smoothies and fruit juice open ice cream counters. If you purchase these, make sure Yoghurt they have been pasteurised. It Live yoghurt is not harmful and is not recommended to have can be safely included in your diet. smoothies made at home However, it is advised to avoid with fresh fruit as it cannot be yoghurts and drinks containing guaranteed that the bacteria has prebiotics and probiotics. gone. Honey Cooking Honey naturally contains yeasts Generally, all food should be

Helpline freephone 08088 010 444 35 Diet (cont.)

well cooked. This includes all is advised that you avoid certain meat, poultry, fish and eggs. fruits, particularly citrus fruits Avoid any undercooked foods like grapefruits or Seville oranges, or anything traditionally served as well as pomegranate and star with uncooked ingredients such fruit as these can increase the as sushi, fresh mayonnaise, drug levels in your blood. homemade ice cream, dressings For more information on how containing egg or any fresh pâté. your food can interact with your Do not reheat foods where treatment, you can order our possible and always follow Chronic Myeloid Leukaemia (CML) standard food hygiene to store booklet. Alternatively, if you would any leftovers in a refrigerator by like information regarding your covering with cling film or foil and specific TKI, check out our booklet using within 24 hours. Defrost entitled Chronic Myeloid Leukaemia frozen food in the fridge and once (CML) – TKIs and TFR or speak to defrosted use at once following your doctor. cooking instructions. The one food you must not reheat Remember: Mealtimes is boiled rice. Cook, serve hot and are a key time of day so eat immediately. Any leftovers try to eat with friends must be thrown away. and family to help you Good food hygiene is important maintain as normal for everyone and simple things a routine as possible. like washing your hands thoroughly before and after food This is an enjoyable preparation, before eating or after social activity and may visiting the bathroom should help take your mind off always be followed. your treatment for a Foodstuffs that short while, benefiting interfere with TKI your overall health and therapy recovery. When being treated with TKIs, it

36 www.leukaemiacare.org.uk Side effects and their amount of food is off-putting and so you can quickly find yourself impact on diet in a situation where you are Nausea eating less and less every day. If you can avoid preparing and First of all, allow others to help if cooking food, let someone else they offer. Someone else taking do it for you. The smell of food the decision of what to prepare cooking can make you feel worse means you do not have to think of so try and stay away from the it and when you get the meal you kitchen if possible. Also fried, may find that you can manage highly flavoured or fatty foods can a small amount after all. Also, make this seem worse so simple, small frequent meals are much chilled or cold meals are often better than three main meals a tolerated better. day so have little and often when possible. Don’t worry too much Sometimes sucking a boiled about healthy eating as it is better sweet, trying ginger flavoured to have two puddings than no chilled drinks or teas, nibbling lunch at all. Also, to make sure a plain biscuit or drinking every mouthful counts, do not fizzy water can help. If you are routinely use low fat, low sugar struggling to drink, try eating fruit foods and add extra spread, ice lollies or ice cubes to help you grated cheese, cream or preserves stay hydrated. to help you increase calorie value of foods. If nausea is so bad that it prevents you from eating and you Constipation and Diarrhoea are losing weight, anti-sickness Both of these bowel problems medication can be prescribed can be the result of oral alongside your treatment drugs to medication, chemotherapy and enable you to eat and feel better. also radiotherapy. You may be Poor Appetite prescribed medication to help you deal with either condition If you have a poor appetite, the alongside your CML treatment. thought of preparing and then However, remember that regular eating a meal or snack can be meals as part of a well-balanced difficult. Often the sight of a large diet, plenty of fruit and vegetables

Helpline freephone 08088 010 444 37 Diet (cont.)

(but do not overdo) and fluids are of over the counter vitamins or key to managing both diarrhoea minerals. There is no evidence and constipation. that these components, that are normally required in very Also, regular physical activity, small amounts, will convey even a short walk for 10 minutes any additional benefit in the in the fresh air, will help regulate treatment of blood cancers. You your bowels and make you feel may be given transfusions of red better by being more active. blood cells or prescriptions of What about ‘special’ iron tablets with some B-vitamins such as folic acid and these must diets? be taken as advised. On a large population basis if scientists look at disease and dietary intake, there are links between dietary patterns in population and disease incidence. However, it is important that you do not follow any unnecessarily restrictive and limiting diets that cut out entire food groups - such as no dairy or no foods containing carbohydrates, foods that are gluten free or suddenly swapping to vegetarian or vegan diets if you previously ate animal products. There is no evidence that diet alone causes any type of cancer or that elimination of food stuffs from your diet will improve or cure a cancer over conventional medical care.

Another dietary consideration often asked about is the use of dietary supplements in the form

38 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 39 Exercise

What are the benefits you are feeling. of exercise? It is possible that exercise There is a huge amount of lowers the risk of cancer relapse, research and information although, whether it can prevent available on the benefits of the recurrence of leukaemia, or exercising with cancer. However, any other type of blood cancer, many people still feel unsure how is still unknown. Keeping your this can help especially when fitness up can reduce longer term you are going through treatment, risks such as heart disease which feeling very unwell and tired. may be associated with some treatments. You need to remember everyone is different. Treatment is specifically When thinking about exercising, tailored to each individual and it is always good to speak to this should be the same with someone from your medical exercise. Side effects, coping team to keep them informed mechanisms and general as they may advise you of any wellbeing effects are not the same precautions you need to take. for everyone and what works for Some side effects are more one person isn’t necessarily going common than others but, in to work for you. general, if you are able to exercise A good exercise programme can at a level that is tailored to your help to improve many cancer or physical needs, these side effects treatment-related side effects. should not be made any worse and, in some cases, may actually Exercise is medicine, wonderful improve. for our physical and emotional health. It is one thing you can Contrary to belief, exercise can do for yourself, which is very help with tiredness and does not empowering. It can be carried out make it worse. An overemphasis before, during and after treatment on energy conservation can but you need to be mindful of how result in treatment-related losses

40 www.leukaemiacare.org.uk of aerobic fitness and muscle depend on your type of treatment strength. Exercise can help to and your current fitness level. decrease bone pain, improve sleep You need to be aware of picking and appetite. If your weight has up infections, so gyms and increased, gentle exercise may swimming pools are not always not stop you putting weight on, the best options. but it can help in reducing the Always ensure you are sensible amount gained. and listen to your body. Those who Exercise can also have significant are already active should not look improvement on your wellbeing at increasing your fitness level and quality of life, helping to if still on treatment but focus on relieve stress related to the maintaining what you have. Your disease and treatment. fitness may drop but do not be discouraged, the fact that you What sort of exercise is are managing to still exercise is recommended? a great achievement. If you have never done exercise, it is still a You need to ensure you choose good idea to try and do some something you enjoy which is gentle activity and walking or a also appropriate for your age and home programme is usually the circumstance. There is no point best prescription. doing something you have no interest in as most people find it Walking enables you to go at your hard enough getting motivated to own pace and distance. The key is exercise in the first place. If you to keep it gentle and easy, so you don’t want to do it, without taking can do little and often, even if it is into account other factors that a walk to the end of the garden. could come into the equation, you are likely to struggle. Treatment can be tiring and some days you may struggle to get Going through treatment is a out of bed and feel completely worrying time but it is good to exhausted. On these days, keep try and exercise gently. A lot will positive, rest and when you feel

Helpline freephone 08088 010 444 41 Exercise (cont.)

better try to do a small amount of day to allow for any physical or exercise. People who are exercise psychological side effects you driven or determined to make may be experiencing. a change need to be cautious. A walking programme is a great Pushing yourself on the days •• way to start physical activity. when you feel better can have If fatigue levels are high, start a negative effect. Hard exercise small and build up gradually. could end up being too much and This could be as little as five result in you spending the next minutes to begin with, adding few days completely exhausted, on a few minutes each time. resulting in no exercise and leading to a negative effect. By Consult with a dietician (your being sensible, it means you can doctor should be able to refer exercise the next day or every you to one, where appropriate) to other day which results in you address weight loss and focus having more active days. You need on gentle strength exercises to feel energised, not wiped out. to improve muscle mass. It is important that you seek There are many variables that out tailored advice on what can determine which exercises or is appropriate for you as your activities are effective and safe personal experience can affect for your particular situation. Every what exercises would be best. day can bring new challenges and new accomplishments, so it Once treatment has finished is important to be able to modify and you are feeling better, you your physical activity to suit your can start looking at increasing needs at any given time. your activity level by basing your starting point on what you have Things to consider: currently been doing. If you were ••Exercise when energy levels are unable to do any activity during at their best. treatment now is the time to look at what you can do. ••Customise your exercise each

42 www.leukaemiacare.org.uk The guidelines for staying healthy cannot forget that the loss of lean are 150 mins of moderate aerobic muscle mass contributes towards activity a week plus two or more this very significantly. When we strength days. Moderate means do not use our muscles, we simply getting slightly out of breath such lose them. as a brisk walk or cycling. You For some people, this is far more can still have a conversation, but than they have ever done or are you are aware of your increased capable of, so keep your goals rate of breathing and are feeling achievable and realistic. There is warm. This can be broken down no point setting the targets too into smaller bouts of exercise high, keep them small so you are to suit you. For example, six lots more likely to succeed, and it will of five minutes may seem more be much easier, more positive achievable to begin with, before and you can then look at your next slowly building up to the 30 step to take your fitness further. minutes for one day. Lifestyle plays a huge role in Strength and resistance days are what we can do and there are where you work your main muscle many barriers which may need groups: legs, back, chest, hips, to be looked at. Not just side abdomen, shoulders and arms. Try effects but motivation, finances, to do this two to three times per time, lifestyle, risk and fear. week, ideally not on consecutive Exercising with a friend can help days. Improving muscular and there are lots of ways to strength and stamina can help exercise which are free, not just to improve your quality of life walking and cycling. Some local by making day to day activities borough councils have set up easier and more enjoyable. exercise groups that are friendly, Gaining strength can also reduce convenient and free of charge. the chance of injury and empower Local exercise classes are a great you both physically and mentally. way of meeting new people and While diet is often the most can provide the support you need critical factor for weight loss, we and give you some confidence.

Helpline freephone 08088 010 444 43 Exercise (cont.)

If you prefer to exercise at Active Daily Living home, there are a number of workout DVDs and home exercise (ADL) programmes available. ADL is another great way to increase your fitness. These are Cancer charities and some jobs or tasks you naturally do centres often run classes during the day, whether at home specifically for those on and off or work, and building on them. treatment. This environment They are ideal if you have a low can feel safe and supportive fitness level or if you struggle for for patients and far less time as they can be built into your overwhelming. daily routine.

Exercise can be daunting, and Jobs at home which get your walking is a good way to start. heart rate up all count. These can You can tailor it specifically to include: your needs in time, intensity and when it is convenient for you. ••Getting off the bus or tube a Pedometers are a great way to stop earlier increase you daily activity and Taking the stairs instead of the can be picked up cheaply, or there •• lift are numerous phone apps which can help. It doesn’t matter how ••Iron a couple of items, putting many steps you do a day, whether them away, coming back and it’s a few hundred or more, you repeating can build on this. ••Parking at the back of the Try and aim to be consistent with supermarket car park your efforts by doing something every day. When energy levels ••Gardening are very low, perform some There are lots of things you can stretches or practice deep do. The aim is to get you thinking breathing techniques or balance about little changes and then movements. these little changes can then lead onto bigger ones. Progressing

44 www.leukaemiacare.org.uk slowly ensures you are being makes them feel emotionally realistic and allows you to plan and physically better and can achievable goals which you can help with strength and range of build on. movement. For more information about these complementary Before embarking on your chosen therapies and others, go to page activity, you need to ensure you 75. have an adequate warm up which can be incorporated into your Once you have established your exercise. It is important to start exercise routine, ensure you build off gently and gradually increase on it gradually. Increase the time your range of movement to get before intensity until you are your body warmer and slowly doing at least 20-30 minutes of build up your heart rate. For moderate intensity exercise a the cool down, bring the heart few times a week before making rate down slowly by gradually it harder. Strength work which decreasing the intensity/speed involves repetitions should be of your exercise and not stopping done moderately, working towards immediately. If you have a slow three sets of 12-15 repetitions progressive warm up, you may (resting between each set). Ensure decide not to include stretches. you can complete one set before However, it is really important to continuing to two and then three remember to stretch the muscles sets and only then increase the you have used after exercise. If weight. you are unsure of which stretches Exercise is important for to do or how to do them, speak those receiving palliative to a physiotherapist or fitness care. Systematic reviews have advisor. Any areas of reduced shown exercise is feasible with flexibility should be worked on important benefits in physical daily, ensuring you are gentle function, symptoms and quality and work slowly without over of life. There can be improvement stretching. Whilst there is no in fitness, functional ability, research to suggest yoga and emotional wellbeing as well tai chi can help prevent or treat as symptoms such as fatigue, cancer, some people find it

Helpline freephone 08088 010 444 45 Exercise (cont.)

dyspnea and anorexia. Quality of life can be helped by keeping you independent and able to carry out everyday tasks which are important to you. Depending where you are on your pathway, there are different options available. Keep in mind what would work best for you and speak to the team around you who can give you the help and support needed.

Once you have decided what you would like to do, you need to ensure you stay safe. If you are going through treatment and experience extreme fatigue, have a low blood count or are anaemic, you should not exercise. If you are unsure, your medical team will be able to advise you on this. After treatment, if you are experiencing extreme fatigue, balance problems, aching, heaviness, swelling, dizziness, shortness of breath for no reason and/or sharp pain in a specific area, you should not exercise and seek help from your GP/medical team.

46 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 47 Fatigue

Fatigue is one of the most nature. common consequences of cancer and related treatments. Its How long does it last? cause, however, is not yet fully There are no hard and fast rules understood. Fatigue is thought to for how long fatigue will last. affect the majority of people who Many CML patients expect to have had a cancer episode and feel fatigued during treatment may be defined as: with TKIs as they can exacerbate "A distressing, persistent, subjective fatigue. However, as diagnosis sense of tiredness or exhaustion and treatments improve we are related to cancer or cancer treatment beginning to learn that people that is not proportional to recent living with and beyond cancer activity and interferes with usual may experience significant functioning." fatigue which interferes with day to day life for several months What does TKI-related and, in some instances, for years. fatigue feel like? The good news is that, over time, fatigue may subside, and a lot of Given the subjective nature of people get back to their normal fatigue, it may feel different from energy levels once blood counts one person to the next. Most have become controlled. people however, will experience a degree of fatigue which feels How can fatigue affect invasive in that it affects them your daily life? both physically and cognitively. This means that it is different Your fatigue can negatively to the tiredness you might impact on all aspects of your usually have experienced prior to day to day life. This may include becoming ill, or as a consequence disruption to your usual and of doing something pleasurable. taken-for-granted activities such as personal care, including It is common for patients to showering and dressing; leisure sometimes find it difficult to and social activities, such as adequately explain how fatigue keeping fit or going out with actually feels due to its invasive, family and friends; and others fluctuating and troublesome may experience disruption to

48 www.leukaemiacare.org.uk work and educational attendance responsibilities and involvement and performance. For people who in day to day activities and events. are working and trying to manage As fatigue is not always obvious with compromised energy levels, to others, it might be that friends, there may be a tendency to use family, or employers do not seem most of their available energy for to understand the impact of work purposes. By the end of your fatigue on a person’s life or how working week, you may find there best to support them. This may is little left in your ‘battery’ for cause you to experience some leisure activities and socialising. feelings of frustration, anger or guilt if you are currently unable Being unable to do everything to do everything you normally do, you need, want and have to do or what others expect from you. can prevent you from being in For some, feelings of anxiety and contact with other people as a sense of sadness may lead to much as you would like. This can distress and low mood which can understandably lead to feelings of be difficult to cope with alone. social isolation and sadness. Relationships of an intimate Additionally, people may nature may also be affected by experience a sense of ‘loss of the presence of fatigue and you former self’ akin to feelings of may feel too tired to participate in bereavement and might grieve sexual intercourse. Additionally, for the normal life they seem to your partner may be cautious to have left behind. Some patients do so and worry that they may also worry about the cognitive make your fatigue symptoms impact of fatigue which may lead worse. For more information about to what some people describe the impact a CML diagnosis can as ‘brain fog’ or ‘chemo brain’. have on your relationship, go to This commonly includes reduced page 16. concentration, memory issues and communication difficulties, All of these affects are commonly all of which can be scary. reported by people living with and beyond cancer. However, there are You may also have worries over strategies that you can employ the expectations others may have to help you better manage these of you in terms of pre-illness roles,

Helpline freephone 08088 010 444 49 Fatigue (cont.)

and feel more in control of your that activity management and day to day activities, roles and energy conservation may help. responsibilities. Here are some top tips for Steps to combat regaining control of your day to fatigue day life: The first step in self-managing ••Identify activities, both physical your fatigue symptoms is and cognitive, that drain your acknowledging that you have battery/energy the most and fatigue. Secondly, being self- make a note of these. compassionate and not expecting ••Identify activities that make you yourself to perform all the feel you have topped up your activities you did before you battery/energy levels. These became ill will help if fatigue is an may include physical activity, issue. such as a paced walk, and do Congratulate yourself on what you not necessarily mean resting or do achieve rather than punishing sleep. Make a note of these. yourself for what you don’t, ••Use a diary or calendar as a regardless of how little it seems, reminder to note down what and do not compare yourself with drains your energy and what others or past performance. tops you up. If you accept that your available ••Pace the most draining energy is not currently what it activities and use top up used to be, you can then begin to activities to replenish your think about how much energy you battery in between. This may have in your ‘battery’, how you are help you get through to the end using this and whether you would of the day easier. like to use it differently. This self-management approach will ••Prioritise which activities you hopefully help you to regain some need, want and have to do and control over your daily activities, decide whether they really all roles and responsibilities. need to be done on the same day. Avoid overdoing things Research evidence demonstrates when you are having a good day.

50 www.leukaemiacare.org.uk ••Plan activities in a diary and professionals. Some people pace them across the week if will need to be educated by you possible, to spread out energy about the impact of fatigue on expenditure. Plan outings and patients with cancer, as they events and incorporate top up are unfamiliar with this. If you points during the day. would like more advice about telling others about your CML Getting back to, or slowly •• diagnosis, go to page 66. introducing, some form of physical activity into your daily ••If you are struggling routines may help to reduce emotionally, try learning a cancer-related fatigue. There is relaxation exercise, mindfulness also some research evidence technique and/or seek medical to show this may also help you help from your GP to discuss to return to pre-cancer levels other support. This may be of sexual activity. It doesn’t in the form of counselling really matter what type of or ‘talking therapies’ and/ physical activity it is, so it is or include temporarily taking your opportunity to choose medications to raise your mood something you would enjoy. It and reduce anxiety. may be through attending a Eat a well-balanced diet gym or yoga class, or pursuing •• and have nutritious snacks something less traditionally throughout the day to top up considered as physical activity, your energy levels. If you would such as dancing, which has like more guidance about how been shown in some research to develop a healthy diet, go to to reduce fatigue. For more page 32. information about exercise, go to page 40. ••Adopt a relaxing ‘wind down’ regime an hour or two before ••Communicate your needs and you go to bed at night in order share your knowledge of CML in to promote relaxation and aid a calm and articulate way with restful sleep. Sleep hygiene all those around you including strategies may be helpful and family, friends, employers, enjoyable. colleagues and health

Helpline freephone 08088 010 444 51 Fatigue (cont.)

••Contact an organisation such needed. as Relate www.relate.org. Remember the fatigue you are uk if you are struggling with currently experiencing may communicating your needs well go away over time. In the to your partner, or intimate meantime, self-managing your relationships. fatigue will help you feel more in ••Access available information control and add to your sense of and local support groups wellbeing. and online forums (see www. leukaemiacare.org.uk) as this may help reduce feelings of social isolation. ••If you have concerns linked to employment issues contact your local Citizens Advice Bureau or access the Advisory, Conciliation and Arbitration Service (ACAS) website www. acas.org.uk. Reasonable Adjustments to your workplace and/or work role under the Equality Act 2010, can be explored to make things easier for you and your employer. More information about this can be found in the work and finances chapter of this booklet, starting on page 54. ••If you are a student, discuss the impact of fatigue with student disability services and request support from your organisation, such as extensions to hand- in dates for assignments if

52 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 53 Work and finances

I’m still working - what ••Will my bonus be impacted? are my rights? ••How will my colleagues react A cancer diagnosis at any stage to my cancer diagnosis and of your life is hard to digest and treatment? how you approach your diagnosis ••How will I come back to work and treatment is very personal. after treatment? If the diagnosis does occur while you are working, it can feel very ••What if I feel I cannot come back daunting and scary. Some of the to work after treatment? questions you may be concerned This is by no means an exhaustive about are: list of questions and, depending ••How will I cope with treatment on your job, there may be many and work? more. ••How will the treatment affect Deciding to continue working my ability to complete my tasks during your treatment is a very at work? personal decision and should be discussed with your manager ••How much time will I need off or Human Resources (HR) for treatment and/or recovery department, so they can best time? assist you during this time.

••What do I do if I need time Treatment plans and the side off for treatment or medical effects are as unique and complex appointments? as the individual undergoing ••Will I be assessed differently treatment. Some people have little at work due to my cancer or no side effects and they find treatment? that continuing with their normal day to day life is the best way of ••Will I be looked over for dealing with their diagnosis. promotions because of the length of time I took off work Other people have severe side for treatment or recovery from effects and can only continue with treatment? flexible working arrangements or cannot work at all. These

54 www.leukaemiacare.org.uk decisions can only be made once your medical practitioner and you have started treatment. communicated to your employer.

Although you may have decided Once you are back at work, your to continue working for the time manager or HR should keep being, it does not mean that you in touch with you regularly to cannot change your mind later determine if you require any and request more flexible working assistance with either your job, arrangements from your employer workload or if there is any other as a reasonable adjustment. You way that they can support you. should note that your employer Going through cancer treatment is required to assist you with can be very challenging but your reasonable adjustments while rights at work are protected under you are undergoing treatment and the Equality Act. Try to be open thereafter. and honest with your employer You may not be discriminated about your treatment plan and against for continuing to work your needs, to enable you to but, if your employer does begin negotiate your treatment and to treat you less favourably as recovery as best as you can. a result of you having cancer Not all employers are aware of at present or in the past, that their responsibilities and your is discrimination and is in rights under the Equality Act. It contravention of the Equality Act is important to make sure you 2010. are aware of your rights both as During treatment, your employer they relate to the Equality Act should allow you as much time and your company procedures. off as you require to attend If you encounter difficulties at medical appointments or undergo work, speak to your manager treatment to aid your recovery. and HR team first, in order to see if a solution can be obtained. Your employer should also If you are still not satisfied allow you reasonable sick leave with the outcome, seek legal after an operation or invasive assistance from either a voluntary medical procedure. The time off organisation, Citizens Advice required should be specified by Bureau (CAB) or an employment

Helpline freephone 08088 010 444 55 Work and finances (cont.)

solicitor. The acts will even protect an employee when they no longer The Equality Act and work for the employer. Cancer Patients In order for you to benefit from In England, Scotland and Wales, the protection of these acts, your the Equality Act 2010 as well as employer must be aware of your the Disability Discrimination Act diagnosis, except for Indirect 1995 (DDA) protects employees. Discrimination. It is advisable In Northern Ireland the extension, to discuss your diagnosis with the Disability Discrimination either your Human Resources (HR) Order of 2006, protects employees. Department or your manager, as soon as possible, so that you can Under these acts, it is unlawful to determine the best way forward. treat an employee less favourably because of their disability. Cancer There is no legal requirement is legally classed as a disability for you to inform your employer and will also include a person who of your diagnosis, but if they had cancer in the past, has gone are not aware of your diagnosis, through treatment and is now in they cannot assist you during remission. The employer cannot your treatment and/or recovery treat the employee less favourably period. Regular absences or low because of his/her past cancer performance when completing diagnosis. your tasks could be considered performance-related issues and The Equality Act and DDA, will not be attributed to your covers all areas of employment, treatment or period of recovery. including but not limited to: The Equality Act protects Recruitment •• employees against Direct ••The employee’s terms and Discrimination; Indirect conditions Discrimination; Harassment and Victimisation. ••Benefits and bonuses Discrimination can occur in ••Opportunities for promotion various ways and may even ••Training be well intentioned. Some of

56 www.leukaemiacare.org.uk the following are examples of you have cancer. discrimination that you may Your employer may select you encounter: •• for redundancy or for reduced ••You are not promoted or offered hours working because of your the same opportunities because cancer. of your cancer. ••Not being offered a job because ••Your employer does not make you have or have had cancer in reasonable adjustments. the past. These are suggested workplace adjustments that could assist Direct Discrimination you during your treatment and/ Direct Discrimination is when, or recovery. due to your cancer diagnosis, you are treated less favourably ••Giving you a warning because than someone who does not have of persistent sick leave and cancer. This can include not being not taking your cancer into offered a job or not promoted consideration. because you have or have had ••Your employer may suggest cancer. that you do another role in the business which is a demotion Indirect Discrimination from your current role and does Indirect Discrimination is when so because you have cancer and there is a "rule, policy or practice without your consent. which applies to everyone" but ••Your employer gives you a it puts you at a disadvantage poor end of year appraisal and compared to the other employees does not take your cancer into who do not have the same consideration. disability. You can only challenge a practice, policy or rule which you ••Your employer may give you a think is indirectly discriminatory reduced or pro-rated bonus. if it affects you personally. ••Your employer may suggest For example, if your employer that you resign from your wants to make redundancies employment or retire because using the amount of sick leave

Helpline freephone 08088 010 444 57 Work and finances (cont.)

taken as a selection criterion, that reasonable adjustments. is indirectly discriminatory. An Your employer is not required to employee with cancer could be make reasonable adjustments if discriminated against because they are unaware or have not been they have had to take time off told that you have cancer, or they work due to treatment and could not have reasonably known will be at a clear disadvantage that you have cancer. However, compared with a person who "should have reasonably known," has not had cancer. In these will be difficult for your employer circumstances, you would need to dispute once they start to see to make your employer aware physical changes occurring due that the policy is discriminatory to your cancer treatment. For because, although neutral in example, if your hair is falling out; nature, it disadvantages you and you are looking ill; you are unable others with cancer. With Indirect to do tasks that you previously Discrimination, an employer may could have done, or you are taking not be deliberately discriminating extended and/or frequent periods against anyone, but it is still of sick leave. discrimination and not knowing you have cancer is no defense. Being required to make reasonable adjustments means It should be noted, Indirect that your employer is required to Discrimination may be permitted assist you to manage your work if the employer can show that with either a change in how your the aim of the policy is for a good employment is structured, by reason or can be justified, that removing physical barriers, or by the aim of the organisation is fair, providing additional support. balanced and reasonable and that reasonable adjustments have There is no definitive description been considered. of what a reasonable adjustment is, but the following will be taken Reasonable into consideration: adjustments ••The size of your employer The Equality Act 2010 and the DDA, requires your employer to make ••How much will the adjustment

58 www.leukaemiacare.org.uk cost another employee. ••How much will the adjustment ••Requesting physical assistance benefit you – changing the way your work station is set up. ••Whether making the adjustment will affect the ••Requesting props to assist you employer’s business service or at work, like a back rest or a financial situation cushion. Here are some examples of ••Making sure that you can reasonable adjustments: access your place of work – including adding a ramp, lift or Having time off to go to medical •• hand rails to name a few. appointments. ••Requesting that your work Having time off to recover from •• location is adjusted – moving treatment. to a lower floor or working from ••Allowing you to tailor your home. hours to suit your needs. This is Reasonable adjustments are not called a phased return to work easily or formally defined. They are and is very often used to ease usually quite specific to you and employees back into work, after the assistance that you require a period off sick. during treatment or thereafter. ••Allowing you to undertake Whether it is a change in your lighter duties during or after duties or hours, counselling, treatment or allowing you more coaching or something more periods of rest. physical, always speak to your employer to determine whether ••Changing your job description they can assist you. Your employer to remove tasks that could is required to try and implement prove physically difficult or reasonable adjustments and stressful. This would be done cannot merely refuse. Reasonable with your full co-operation and adjustments can be either agreement. temporary or permanent. It is ••Sharing some of your tasks with more difficult for an employer to

Helpline freephone 08088 010 444 59 Work and finances (cont.)

refuse a temporary adjustment The law will also protect your and it is a good starting point colleagues from Victimisation if when asking your employer they support you in making the to implement reasonable complaint. adjustments. Harassment If you encounter difficulties having your reasonable Harassment is where certain adjustments agreed to, it is behaviour is meant to or has important to think about seeking the effect of either: violating legal assistance. There are also a your dignity, or creating an number of free services available intimidating, hostile, degrading, that can assist you, including the humiliating or offensive Disability Law Service or Working environment. with Cancer. Harassment would also include bullying in the workplace. Victimisation According to the Workplace Victimisation is when you, as Bullying Institute, bullying at work a disabled person, are treated means "repeated, health-harming less favourably than another mistreatment of a person by one employee, for asserting your or more perpetrators. It is abusive rights as a disabled person. conduct that is: threatening, humiliating, or intimidating, or An example of this would be if work interference or sabotage you were to request time off for which prevents work from getting treatment and your manager does done, or verbal abuse." not grant your request. You decide to take the matter up with your HR What do I do department. They agree that you if I encounter are entitled to the time off and instruct your manager to grant discrimination in my the time off. Your manager is now workplace? so annoyed that you went over If you feel that you have been their head to HR that they do not discriminated against at work, put you forward for training and speak to your manager or HR you are given a negative appraisal. Department and see if the issue

60 www.leukaemiacare.org.uk can be resolved. Quite often issues invested in resolving the arise due to miscommunication situation. or the employer not being fully Make sure you know and aware of your needs and/or your •• understand your legal rights. situation. Try to speak openly and update them about your situation If the matter still stays unresolved throughout your treatment and despite you approaching your after your return to work. employer and speaking openly about it, you may be required to If you are unable to speak to lodge a formal grievance. your manager or HR department, speak to your Union if you belong Your employer will have their to one or ask for help from an own grievance procedure, either Occupational Health Adviser, in their employer handbook which your employer can arrange or stated in your contract of for you. If you still feel like issues employment. If you are unable to are not being addressed, seek find this, ask your manager or HR assistance from the Citizens department for a copy. Advice Bureau or organisations like Working with Cancer or To raise a formal grievance, you Macmillan Cancer Support which will need to write a letter to your deal specifically with providing manager detailing the incidents advice about work to cancer which have led you to believe patients. that you have been discriminated against. It is suggested that you What should I do? be specific and detailed when drafting this letter. Your employer •Have a look at the relevant • will be required to investigate company procedures and your grievance and deal with it policies. Your manager or HR fairly. department should be able to provide you with a copy. If you are not satisfied with how your employer is dealing with •Approach your employer with • your grievance and you believe solutions and suggestions. that it is not being dealt with This will show that you are fairly, or your employer is being committed to your job and

Helpline freephone 08088 010 444 61 Work and finances (cont.)

unreasonable, you can bring a sick leave, then you are likely to complaint to an Employment be entitled to Statutory Sick Pay Tribunal. from your employer. You can have 28 weeks (about 6 months) of SSP Before you bring a claim, you will before it runs out. This is usually have to notify ACAS (Advisory, straightforward to ‘claim’ because Conciliation and Arbitration it is arranged and paid by your Service) of your intention to lodge employer like your normal pay. If a claim. ACAS will try and sort you (and your partner’s) income out disputes between the parties is low, then you might be able to before the matter goes to an top up your income with a benefit Employment Tribunal. called Income Support. More information on how to lodge Employment and Support a claim with an Employment Allowance Tribunal can be found here: www. gov.uk/employment-tribunals This benefit provides financial help to people who are unable Alternatively, you should seek to work following completion of advice from an Employment the Statutory Sick Pay period (28 Solicitor. weeks). You may also be eligible if you can’t claim SSP because I’m unable to work: you’re self-employed, unemployed what benefits am I but not in receipt of Jobseeker’s entitled to as a cancer allowance, you earn less that the patient? National Insurance contribution threshold or are under State There may be various benefits Pension age. ESA also provides available to you, all of which personalised support to those will depend on your individual who are able to work. circumstances – there is no benefit for which you There are three different types of automatically qualify solely based ESA, each with different eligibility on your cancer diagnosis. criteria: Statutory Sick Pay 1. ‘New style’ ESA – to claim this you will need to have been If you are an employee taking

62 www.leukaemiacare.org.uk employed or self-employed will look at how many hours you’re and paid National Insurance working, how long you have been contributions, usually within on sick leave, whether you are the last two to three years, paying for childcare, and much and now have an illness or more. Working Tax Credit is paid disability that affects your for people in full-time work and ability to work. you can be treated as being in full- time work for the first 28 weeks Contribution-based ESA – 2. of sickness if you were working this follows the same type of sufficient hours beforehand. You criteria as ‘new style ESA’, but have to be responsible for a child you also have to be in receipt of in order to get Child Tax Credit. the severe disability premium or you should have received it Personal Independence within the last month and still Payment be eligible for it. If you have care or mobility needs 3. Income-based ESA – this and you expect these needs to type of ESA is not related continue for another nine months to your National Insurance or more, then you might be contributions. eligible for PIP. There is a fast- track system with guaranteed For 13 weeks after your claim you eligibility for the enhanced daily will receive the assessment rate living component of PIP for and, if you are entitled to ESA, you claimants with a terminal illness will be placed in either the work- who have a ‘DS1500 form’ from related activity group (up to £73.10 their doctor or specialist nurse. a week) or the support group (up PIP is not means-tested, so you to £111.65). can claim it regardless of your Tax Credits employment status, income, and savings. Depending on your circumstances, a reduced income Housing Benefit and Council might entitle you to Working Tax Tax Support Credit or Child Tax Credit or both. These two benefits can help with The eligibility criteria for Tax rent and council tax bills. You Credits can be complicated and

Helpline freephone 08088 010 444 63 Work and finances (cont.)

cannot claim Housing Benefit for benefit entitlement for people mortgage payments. These are too ill to work. There are many both means-tested and will take other benefits available, as well account of your circumstances as further eligibility criteria for to determine how much help the benefits that are listed above. you are entitled to, such as non- It is well worth seeking help from dependents living with you and specialist advisors at Citizens how many bedrooms you have. Advice, Macmillan, or other Housing Benefit is unlikely to benefits advice agencies locally. cover the full cost of a privately More information about benefits rented property. can be found at www.gov.uk Universal Credit Can those caring for me This is a new benefit rolling out claim any benefits? across the country which replaces If someone is caring for you then Income-related ESA, Income- they should be able to claim based JSA, Income Support, Carer’s Allowance as long as: Housing Benefit, and Tax Credits and unifies them into one benefit. ••They spend at least 35 hours per In some areas of the country, week caring for you you must claim Universal Credit instead of the benefits it replaces. ••They don’t earn more than £116 For sick or disabled people, per week Universal Credit will usually ••They are over 16 and not a full- mean less weekly income than time student the benefits it replaces. If you live in an area that only offers and In addition, they have to be caring accepts new claims for Universal for someone who receives a Credit, but you still receive the disability-related benefit such as old benefits, you should seek Personal Independence Payment specialist advice before making or Attendance Allowance. If the any new claims – it could trigger person being cared for does a switch to Universal Credit and not receive such a benefit, then leave you worse off. the carer cannot claim Carer’s Allowance. This is only a brief overview of

64 www.leukaemiacare.org.uk If the carer does meet all the reduce your weekly income if you criteria, then they can claim are receiving a severe disability Carer’s Allowance of (currently) premium. £62.70 per week. If they have a low If the person caring for you income, then they might be able already receives state benefits to have their income topped up or a State Pension, then they by another benefit called Income might not be able to receive any Support. Carer’s Allowance payments. It is feasible that you could face This is because other benefits a situation where your carer has ‘overlap’ Carer’s Allowance. Even if to stop work to care for you but this is the case, the carer should cannot claim Carer’s Allowance still apply for Carer’s Allowance. because you are not in receipt of Although they will not receive Personal Independence Payment. any payments directly, they should be awarded an ‘underlying As a PIP claim can take months entitlement to Carer’s Allowance’ to reach an award, and often are that can be beneficial to them unsuccessful, it could mean a when calculating other benefits long wait without any income for and credits them with National the carer. If your carer is on a low Insurance contributions. income they could be entitled to Income Support whilst you are In some circumstances, a carer waiting for your PIP or Attendance under pension age can claim Allowance claim to be decided. Carer’s Credit even if they aren’t However, they will not get paid entitled to Carer’s Allowance. beyond 26 weeks if your claim This won’t give the carer any takes longer than that to decide. income, but it will credit them If you are living on your own and with National Insurance credits receiving a disability-related towards their State Pension. benefit in addition to other benefits, such as Employment and Support Allowance or Pension Credit, then seek advice before allowing a carer to claim Carer’s Allowance. Their claim could

Helpline freephone 08088 010 444 65 Telling others about CML

Your relationships are unique to you and so there is no one way to tell others about CML. Our relationships can be a great source of support when we are ill and can bring people closer together. Relationships are often complicated, and the challenge of illness can open up difficulties as well. It generally helps when communication is as open and honest as possible. Here is some guidance to help you think about what feels right for you.

Should I tell others you want to know and others that you would prefer not to. It is about the CML? up to you who you tell and how When you are first diagnosed, much you tell them but going there is a lot of information to through treatment for CML is take in and you may be feeling not something that you can hide shocked and overwhelmed by from the people closest to you. different emotions. You may You may be concerned about how need to give yourself some time family and friends will react and to think about this enormous be tempted to protect them from thing that is happening to you upset and worry by not telling before you decide when and how them. It is usually harder for them you tell others about it. People to manage when they sense that may be anxious to know what is something is wrong and try to happening and this can make guess what it is. Take some time you feel under pressure to pass to plan how you will tell children on information before you are and elderly parents. It may help to ready. Let them know that you sit down with someone else first need some time to process the and rehearse what you are going information yourself before you to say. Hearing yourself say the are ready to talk about it in more words out loud first will help you detail. to feel calm when you come to talking about it. There will be some people that

66 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 67 Telling others about CML (cont.)

How to tell a partner to have lots of information and ask lots of questions and the Your partner may have been with other may prefer to know less or you when you heard about the to quietly think things through. CML. If not, they will most likely One may like to talk about want to know as soon as possible feelings and the other not. You to be able to support you. It can may want to try and protect each be hard talking to them about it other from upset or how you feel, because they will have their own and this can get in the way of concerns and emotions and they talking to each other when you will also need time to adjust to most need to. Finding ways to the shock of the diagnosis. manage your different needs can As you adjust to life with CML, be a challenge throughout your your partner and family will be experience of CML. affected in their own way. They will Some couples describe having also need the support of family to go through the challenge of and friends. They can also access illness as an experience that support for themselves such brings them closer together. For as counselling and support for others, the stresses can put a children through helplines and strain on the relationship and it cancer support centres. Ask your can become difficult to find your healthcare team about what is way together. The more open and available locally. honest you are able to be with It can be helpful to have your each other, the more you will be partner with you for hospital able to work together as a team to appointments so that you are get through it. both able to hear the information When you are going through being given and have the some treatments, it can be hard opportunity to ask questions. We to find time for yourselves as often have different needs for a couple. When you are feeling information. Perhaps one prefers relatively well, you may want to

68 www.leukaemiacare.org.uk set aside some time to catch up People will have their own ideas and give each other a chance to and possible misunderstandings say how you are. Identify what is and it can create more helping each of you get through uncertainty for you if you cannot this time and what is making it answer all of their questions. difficult. This could be on both an It is exhausting to have to keep emotional and a practical level. It repeating the same difficult is also helpful to set aside some conversation and you could ask time when you can be a couple someone else to tell people who and do something "normal" like are not so close to you. It can be watch TV, have a trip out together easier over the phone or by letter or decide to have a CML-free day or email as this gives you more where you talk about other things. control.

How to tell a friend or People will often want to do what family member they can to help and support you. Telling people that you have a Think about practical things that rare condition like CML can be will help such as lifts to and from hard to explain. Keep it simple hospital appointments and help and explain that CML is a type of with shopping, housework or blood cancer. It means that the childcare. As treatment continues, bone marrow does not function you will have a better idea about properly, and this affects the what you need and what works for blood cells it produces. The you. treatment will aim to get the CML Your family and friends will be under control. keen to know how you are and If they have more questions, you for updates about your progress. may find it easier to direct them Keeping in touch can be hard to information leaflets or our work when you are not feeling website for more information than well, and you may want to to try and explain it all yourself. consider having someone else as a point of contact to pass

Helpline freephone 08088 010 444 69 Telling others about CML (cont.)

on information. This saves you them. This is hard when you’re not from having to repeat similar feeling well yourself. People who conversations. You may not feel care will want to help you as best up for long conversations when they can, but they may first need you are feeling unwell but keeping time to adjust. in touch through texts can help You may find that not everyone is you feel connected to others. sensitive to your needs and this Some people send out a group can be upsetting and frustrating. email or use social media to pass If some people avoid you, it is on news. This can make it quick usually because they don’t know and easy to contact a lot of people what to say or are worried about at once. However, do consider saying the wrong thing. Often who you want to see your posts, people make assumptions and check your privacy settings and say what they think is helpful. remember that information stays They might say that you look well, on the internet unless you remove recount stories of others they it. know with a similar diagnosis or even a completely different type of Coping with other cancer. They may encourage you people’s emotional to stay positive and to look ahead. reactions They may have advice about particular diets or supplements You can be sure that there will be you can take. This may not reflect a wide range of reactions from how you are feeling or be what you people you talk to about your want to hear. Where possible, try illness. Hopefully, they will be to let people know what you find supportive and open to following helpful and unhelpful. In time, your lead about what will be most you will discover who is better helpful to you. Some may be upset at giving you the practical and and distressed by your news and emotional support that you need. you may find yourself needing to be strong and supportive for See the people that you want to

70 www.leukaemiacare.org.uk see and talk about what you feel Telling children or comfortable with. Ideally, people will give you the opportunity to vulnerable people talk about how you are feeling if Our instinct is to protect children that is what you want or respect from upset and you may be your wishes if you prefer not to tempted to put off telling them talk about it. Some of us are better about your diagnosis. You may listeners than others. It is fine to worry about how they will cope change the subject if you don’t and how you will support them, want to talk about something. especially when you have so You could say that you are giving much to deal with yourself. We yourself a break and having a day know from research and the without talking about your illness. experience of others that children Asking others about themselves cope better when they are told and what they are doing can about an illness. Children are very steer the conversation away from good at sensing when something illness. is wrong, and it can be more distressing for them to not know Going through CML is an what this is. Not telling them can enormous challenge and you and leave them feeling frightened those close to you are likely to feel when they don’t understand stressed at times. It’s natural to what is happening. Talking about feel anxious, angry or frightened the illness with openness and when faced with CML and it is honesty sets the tone for the way often those closest to us who ahead. may feel the brunt of these strong emotions. We often take out our Telling your children means that feelings on those close to us. This you can be more open about what can put a strain on relationships. you say at home and not have The more open and honest we to worry about them hearing can be during these times, the something at school or from easier it is to work through any someone else. It gives them the difficulties or misunderstandings. opportunity to ask questions and

Helpline freephone 08088 010 444 71 Telling others about CML (cont.)

to say how they are feeling. It can impact on them. Let them know help you all to feel closer and to that they have not caused the CML work through things together. and that they cannot catch it from you. They may carry on playing Telling children about the CML in as if they haven’t understood a way that they can understand but they will be processing the will vary according to their age. information in their own way. They If you have more than one child, may then surprise you with a very telling them together or as closely direct question when you least together as possible will avoid one expect it. carrying the burden of knowing or wondering why they were told last. Teenagers are likely to want more information but will also You know your child best and so need time to work through their trust your instincts when it comes feelings. They might be reluctant to supporting them. You might to talk about it with you and may like to think about what you will want to spend time alone or will say in advance and choose a time seek support from their friends to avoid interruptions. Try not to or other family members. Letting put pressure on yourself to have your child’s school know will the perfect conversation. The aim mean that that they can also offer is to convey enough information support. to begin an on-going process with many more opportunities to talk As time goes on, help them to about what is going on. You may be prepared for any changes in be surprised by their questions your appearance such as hair or reactions. It is fine to say if you loss and weight changes. Explain can’t answer all of their questions that fatigue may make it harder but can try to find out. for you to do the same activities with them. If they are able to Younger children will respond visit you in hospital, explain to small chunks of information what they can expect to see. at a time and may be keen for Playing with hospital toy sets, reassurance about how it will books and imaginary games can

72 www.leukaemiacare.org.uk help younger children express themselves and feel connected Our easy read to what is happening. Reassure document, All About them that their routine and Leukaemia, may be activities will stay the same as a useful resource to much as possible. Explain that help tell your loved family and friends may be more ones about your involved in activities such as diagnosis. To order a picking them up from school and copy, call the helpline be clear about what the plan for on 08088 010 444 them is. Maintaining boundaries and limits for all ages will help Telling work about the them to feel contained and more able to know where they stand. diagnosis Being diagnosed with CML will You may have vulnerable people mean that you need to start in your life, perhaps a frail treatment straightaway or in a parent or relative or friend who matter of weeks if it has been is unwell that you would like to discovered very early. You or tell. Again, plan how you will tell someone else will need to let them as appropriate to their your employer know about your circumstances and explain that situation. Your medical team you may not be able to visit them will be able to advise you about as frequently whilst you are going timescales. You may need to through treatment. They may want negotiate a reduction in working to feel that they too are able to hours or arrange with your support you by thinking of you. employer for times when you are in hospital or for when you are not well enough to go into work.

Your consultant or your GP can arrange letters to your employer to confirm your diagnosis and the

Helpline freephone 08088 010 444 73 Telling others about CML (cont.)

effects it may have on your work Returning to work after your initial life. It is often worth taking time diagnosis or after the initial side to explain CML to your employer, effects of your treatment have as it is likely they will never have subsided can feel like another heard of the disease. big challenge. You may wonder if people will want to talk about Hopefully, your employer will be it too much or not at all. If some supportive. You may worry that people avoid you, it is usually you could be given the sack or because they don’t know what to made redundant if you cannot say or are worried about saying work. This should not happen the wrong thing. It can help if you because people with any form or your colleagues let people know of cancer are covered in law by if you do or don’t want to talk the Equality Act. This means about it. Plan beforehand what that legally your employer you might say if someone asks cannot discriminate against how you are. It is up to you what you and must make reasonable you say and in how much detail. arrangements relating to your At other times, it can seem that disease. people have forgotten what you You may also be wondering about are going through and you need what you tell your colleagues. to gently remind them that you You may want to keep your are still coping with side effects diagnosis to yourself and it is and that your recovery is ongoing. important that your privacy is As with all of your conversations respected. Telling those you are about CML, being honest and closest to gives them a chance saying what you need to say to support you and may help you is generally the most helpful feel connected to work. It can also approach and makes it easier for make it easier when you do go you both. into work if they know that you are at risk of infection or if fatigue or poor concentration is a problem.

74 www.leukaemiacare.org.uk Complementary therapies

Complementary therapies an appropriate therapist privately. have been used in a supportive During your treatment and capacity both within the NHS and hospital visits you may be offered by charities for the enhanced a choice of treatments from a wellbeing of patients and clients complementary therapy team; within haematology for over this service would usually be 30 years. Aromatherapy and free and provided by experienced reflexology are generally the most therapists who are accustomed popular and available within the to CML and the treatment you are NHS due to their effectiveness; receiving. assisting with overall wellbeing and relaxation, as well as Complementary addressing pain, nausea and other side effects from treatment Therapist and medication as part of a A complementary therapist will package of care. Consultants have offer supportive therapy as part of commented that the more relaxed an integrated practice, alongside the body and mind is, the better standard medical treatment for accepting of their treatment it is, CML, not an alternative treatment. even taking bloods. When looking for a therapist In the next section, there is some it is important to ensure your information about a variety of therapist has appropriate training complementary therapies and for your needs. The therapist exercise that may be helpful at will generally be a member of different stages; before, during a representing body for their and after your treatment. therapies and must have the appropriate insurance. The guidance is to enable you to have an overview of the The Complimentary and Natural benefits of different therapies Healthcare Council (CNHC) is a and also includes contacts and representing body for yourself as information to enable you to find the client. All therapists on this

Helpline freephone 08088 010 444 75 Complementary therapies (cont.)

register will have a certain level Types of of qualifications and insurance. Most NHS therapists will be complementary and members. When approaching supportive therapies a therapist do check that Acupuncture they have taken part in some Acupuncture is a form of additional training or continued Traditional Chinese Medicine professional development (CPD) (TCM). This treatment uses the or have experience with haemato- application of fine needles in oncology clients and understand points in the body which have the appropriate guidelines that been identified as helpful for apply. various symptoms and side When treating patients with effects that are present at CML, all hands-on massage the time. Many people find therapists are advised to work acupuncture very relaxing and with light touch techniques and useful for health problems such massage due to the possibility of as fatigue, sleep problems, low platelet counts and the risk nausea and pain. It can also of bruising. This doesn’t affect support emotional wellbeing. the quality of treatment but Health professionals and ensures you receive massage or doctors also train in a method reflexology with the appropriate of acupuncture called Western lightness of touch, and therefore Medical Acupuncture which the best outcomes. is often used as part of an Before starting on a course of integrated service. NICE treatments the therapist should guidelines recommend take a detailed case study on your acupuncture for headaches, overall health and wellbeing in whilst it has also been reported order to tailor the treatment to as beneficial for nausea and you, accommodating your needs. vomiting. The WMA approach is different to TCM, but they are used for similar concerns.

76 www.leukaemiacare.org.uk For more information on the The use of touch and essential two approaches – including how oils are documented with positive they differ, and which may be results. For example, lavender more suitable for you – speak to has been found to be beneficial a professional acupuncturist or for stress and anxiety due to the your medical team. amount of the chemical esters in this oil which are known to Aromatherapy be calming and soothing. When Aromatherapy is the use buying essential oils for home of essential oils which are use, good quality oils should be aromatic volatile oils extracted used especially when they have from plants. Aromatherapy as contact with the skin. Essential a therapy is most often used oils should always be diluted, with massage but can be used the exceptions being lavender in bath and skin preparations, and tea tree which are generally inhalation, compresses and acknowledged as being suitable other methods. The chemical to apply directly to the skin. constituents or make-up of each However, if you are unsure, a oil assists the aromatherapist in patch test should be carried out choosing the most appropriate with the oils first. Oils used in oil or combination of essential an aromatherapy fan or ceramic oils for their client’s needs. burner are using the olfactory These therapeutic properties senses and so, the aroma must of essential oils may assist be pleasurable. Only a few drops with psychological, emotional are needed, and, if using in the and physical concerns and, bath, always follow guidelines. If importantly, relaxation. Clinical you have nothing to hand, the fat aromatherapists would also content of a couple of tablespoons choose essential oils to assist of milk will disperse the oil into with side effects of standard water. Coconut oil is also suitable. medical treatments which might For a massage, the include nausea, poor sleep and aromatherapist will blend a pain. dilution of essential oil in a

Helpline freephone 08088 010 444 77 Complementary therapies (cont.)

vegetable oil, often known as the anxiety, or the feel-good factor. carrier oil. A very weak dilution, An aromatherapist may give the usually of around one percent, balance of an oil blend in this would be made up for those way for home use and a lovely with CML who have undergone reminder of the benefits of the treatment, or those who are treatment received. less well. An aromatherapy Nourishing blends of carrier massage should be light touch oils can feed the body through and leave you with a feeling of the skin, providing a variety deep relaxation. Relaxation is of nutritional benefits when an important part of recovery. absorbed, as well as excellent skin Massage can be full body or care. directed to specific areas of discomfort. A hand massage can Bowen technique be extremely relaxing. The Bowen technique is a In addition to massage the gentle therapy which aims to aromatherapist may make a rebalance the body’s energy flow personal inhaler to assist with to assist the body to heal itself. specific problems. Inhalers can This treatment utilises a light be useful to carry with you for rolling movement of the thumb nausea, using a blend that might and fingers over the skin. This include Spearmint. Inhalers can system uses subtle and precise also assist with deepening the mobilisations called "Bowen breath. Frankincense may be moves" which affect the muscles, used to help when we are anxious, tendons, nerves and fascia and our breathing becomes (connective tissue) by application shallow. Blends of essential oils of this gentle treatment with can also be diluted for use in a non-invasive pressure. These roll-on bottle which can be used procedures follow prescribed like a perfume on pulse points. sequences to affect specific Suitable blends can be extremely body systems. The therapist will helpful assisting with stress and take frequent pauses during the

78 www.leukaemiacare.org.uk treatment to allow the body to addressing different emotions. A adjust and absorb the treatment. blend of essences is common as a rescue remedy, as in Bach flower Energy therapies remedies, and thought to assist Bach flower remedies and with stressful situations such as flower essences hospital visits and exams. Flower essences are preparations Flower essences are available which utilise flowering plants from many chemists and health and the sun’s energy. Bach flower shops with accompanying remedies were created from information to assist in correct British plants. Other examples of selection. essences are made from varieties Therapists who specialise in of rose or other countries’ flower essences will take a case indigenous plants such as history and then blend a group of Australian Bush plant remedies. essences to address their client’s Flower essences are considered emotional needs. by some to assist with emotional imbalance, often assisting Energy therapies; with emotions, mood, mental healing, reiki, state, shock and sometimes therapeutic touch trauma. These are often seen as precursors to physical illness. These therapies are frequently The essence from the flower of used in supportive and palliative the plant is usually stabilised care. Although the word ‘healing’ in alcohol, although special is used as part of the treatment, preparations are available for this is not referring to cure those who wish to avoid any and likewise ‘spiritual’ is not alcohol content. Just a few drops associated with any religion. are added to water or dropped These modalities are often used under the tongue. with the intent to assist with pain relief, promote relaxation, Each plant has a unique signature improve sleep, to contribute to a

Helpline freephone 08088 010 444 79 Complementary therapies (cont.)

sense of well-being or to reduce Therapeutic Touch side effects of chemotherapy and Therapeutic touch is a modern radiotherapy. interpretation of some Healing traditional healing approaches. It is described as an exchange Healing, sometimes referred to of energy between client and as spiritual healing, is described practitioner, a healing meditation. by The National Federation of During the treatment, the Spiritual Healers as "a process practitioner will place their hands that promotes better health, a little way above the client’s through the channeling of healing body and rhythmically move their energies through healer to hands from head towards the feet receiver". Healing should not be with the aim of creating a sense of confused with curing cancer. deep relaxation for the client with There is some evidence that the potential of reduced anxiety. suggests this supportive therapy Hypnotherapy may quicken the body’s own healing process. The practitioner Clinical hypnotherapists believe will use light touch or no touch as that creating a more positive appropriate for the patient who relaxed state of mind helps the will be clothed. body to repair and heal. Reiki Hypnotherapy is a way of reducing the stress response. During a Reiki is a method of healing which first hypnotherapy session, the promotes the aim of homeostasis hypnotherapist will take their through balancing the body’s own client through a progressive Ki (energy) with Rei (universal relaxation, relaxing first the energy). This healing modality body and then the mind. The originated in Japan with its origin therapist may provide clients in self-healing. Reiki treatments with relaxation techniques and are received in a similar way to recordings to help them relax at healing with the recipient fully- home and, after a little practice, clothed.

80 www.leukaemiacare.org.uk these may assist a reduction in in touch with the practitioner’s stress levels with an improved voice but in a deep sense of sense of relaxation, with the aim relaxation. The therapist will of feeling much better as a result. make positive suggestions which may assist in a change in mental Hypnotherapy aims to create attitude towards a problem or powerful and positive changes. life concern, either physical or Unlike other therapies that emotional, according to the desire work over a prolonged period, of the patient. Hypnotherapists hypnotherapy will help you to also have reported success with move on as quickly as possible, addictions. leaving unwanted anxiety, stress, fear, phobia or habit behind, often Massage after only two or three sessions. This touch therapy is the most There is significant evidence well-known, but sometimes for the use of hypnosis within met with reluctance. A clinical/ integrative care in reducing professional therapist will have different side effects to treatment completed extensive training such as nausea or anxiety or and qualifications in anatomy overcoming phobias. Some and physiology in addition to medical practitioners receive extensive massage techniques. training in these techniques. Therapeutic Massage is a combination of different touch Hypnotherapists will often tape techniques manipulating the record sessions for use at home soft tissue using the hands in the same way as a meditation, and perhaps forearms. Each with mindfulness techniques treatment will vary according to often incorporated into it. During a the client’s requirements and hypnotherapy session, the patient health state. CML patients and or client will be guided into a others recovering from ill health trance state, through suggestion should receive a lighter touch as of voice. This trance is a state of they may be at risk of bruising. awareness where the client is Pressure will vary dependent on

Helpline freephone 08088 010 444 81 Complementary therapies (cont.)

the sensitivity of the body and Reflexology will ideally be a gentle rhythmical A reflexologist will apply an touch. Oil, or sometimes powder, intermittent pressure using is used to ensure a smooth and their thumb and fingers to areas comfortable treatment. The of the feet or hands which they therapist will offer a full body believe will access all body massage or massage to specific systems with the aim of bringing areas of discomfort such as neck balance, or homeostasis, to their and shoulders. In cancer and client. A reflexologist does not palliative care, several studies diagnose but, with reference have taken place identifying of a foot chart, which relates assistance with anxiety, pain and areas of the feet to areas of the a variety of reduced physical and body, they can identify potential emotional symptoms. areas of imbalance through M Technique an altered state in the feet in different areas. Clients may also Touch M has been widely used in feel areas of discomfort in their hospital and hospice care. This feet or sensation in their body. very light touch manual treatment If this is the case, the therapist utilises a formula where each and client together will identify treatment will be given in the areas of imbalance in the same sequence and same level of body. This holistic treatment is light touch throughout, making found by many clients to offer it accessible to anyone, however deep relaxation, boost their unwell. Treatment can be full immune system and assist with body or just to specific areas. maintaining good health. Some Training is available to anyone studies and client feedback have who wishes to give touch to suggested that reflexology can friends and family, also for health assist with anxiety, pain, nausea, professionals and therapists. M sleep and digestive problems. technique is extremely relaxing and invaluable to anyone with Reflexology Lymphatic low energy or high stress levels Drainage (RLD) or where deeper massage is RLD is additional training inappropriate. available to qualified

82 www.leukaemiacare.org.uk reflexologists which focusses and emotional distress and live a specifically on the lymphatic happier life no matter what we are system. Early indications from facing. the founder suggest RLD is A candle or flower or other object useful in reducing volume for may be used to focus the mind lymphoedema and assisting with to help build concentration. The oedema as well as inflammatory instructor or teacher will use the and auto-immune disorders. patterns of your breathing and This treatment of feet or hands is may also use guided meditation deeply relaxing. as well as other techniques for Movement, self-practice. mindfulness and Mindfulness classes and courses meditation in healthcare have become increasingly popular, including Mindfulness and meditation the following programmes: Meditation, or mindfulness Mindfulness-based stress meditation, is often offered by reduction, Mindfulness Based yoga teachers as a separate class Cognitive Therapy and Mindful or as part of a regular yoga class. Self-Compassion. The aim of meditation is to bring your attention and awareness Mindfulness invites you to pay more fully to the present moment, attention to your present moment being aware of thoughts, physical experience with kindness and sensations and emotions, as curiosity; thus, changing your they arise, experiencing them as relationship with your experience. they are without trying to change Proven benefits include reduced anything. This simple act of stress symptoms, improved bringing attention and awareness quality of sleep and enhanced to our experience from moment to quality of life. moment allows us to find better Yoga Nidra ways of responding to situations in our lives rather than our Yoga Nidra is a form of guided automatic habitual reactions. This visualisation bringing attention can lead us to reduce physical to different parts of the body. This practice requires the

Helpline freephone 08088 010 444 83 participant to lie or sit quietly This Tripudio Flow sequence while their mind is guided is also used at the beginning through a structured sequence of and the end of a one-hour class visualisations. Yoga Nidra may be which uses a mixture of seated offered as a one to one session or and standing gentle stretching, in a class. This practice is deeply mobilisation, strengthening and relaxing and can also be taught low impact aerobic exercise all for self-practice. set to music. There is no floor work involved and TMS is suitable Tai Chi for any age or ability. Classes are Tai Chi could be described as often on offer at cancer centres, a moving meditation, using hospices and hospital clinics, as a sequence of gentle flowing well as in the community. movements that combine breathing, movement and Yoga awareness exercises with There are many different styles meditation. of yoga, some very vigorous and others slow or relaxing. There are many forms of Tai Chi Gentle classes which focus on and, practiced regularly, may help a mix of stretching/postures, reduce symptoms or side effects breathing and some meditation including stress and anxiety, or relaxation would be most increase flexibility and balance appropriate. To support your and improve overall physical and wellbeing, find a class that offers emotional wellbeing. a gentle, relaxing approach or a Tripudio Movement Systems class that is specifically designed (TMS) for people who are affected by cancer. Tripudio Movement was developed to provide a short practical Yoga aims to bring balance to sequence of movements that the whole (mind, body and spirit) can be taught for home practice, through awareness of your breath encouraging a healthy, flowing and movement. Classes usually lymphatic and circulatory system last between one to one and a utilising a mixture of gentle half hours and require loose or mobilisation and stretches which comfortable stretch clothing and can be done seated or standing. bare feet.

84 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 85 Mindfulness

What is mindfulness? much better. Mindfulness is a way of living What are the benefits our lives that can help us of mindfulness? become more resilient and cope more effectively with whatever Mindfulness can help us learn we are facing, including living to respond more effectively to with a diagnosis of leukaemia. whatever is happening in our Mindfulness is a natural lives. Whilst we cannot prevent human tendency that we can all difficulties from happening, develop. Through the practice of through mindful awareness we mindfulness, we become more can learn to cope better with aware of the experience of what situations. is happening from moment to Increasing our awareness of what moment and therefore engage in is happening from moment to an effective way of responding moment enables us to notice to it. The present moment is the our automatic reactions and only time that we can change learn to respond more effectively. anything, including our automatic We can respond better to our reactions and responses to any constant stream of thoughts given situation. and worries. Research in people With regular practice, we can affected by cancer has shown this cultivate mindfulness; we learn to be helpful with pain, stress, to rest back into the awareness fatigue, anxiety and depression, of the moment to moment and generally helpful with comings and goings of physical general wellbeing. Essentially, sensations, thoughts, emotions, mindfulness can help us to sounds, sights, smells and tastes. live happier and healthier lives, We can bring curiosity to this whatever we are facing. rather than judgement. This can help us to become less reactive How to be more and we can become more effective mindful in our responses to whatever we We can incorporate mindfulness are experiencing. This helps us into our lives in two ways. become more resilient and cope

86 www.leukaemiacare.org.uk One is the formal practice of called Mindfulness Based Stress mindfulness, setting time aside Reduction and Mindfulness-Based to bring awareness to sensations Cognitive Therapy. Courses can be occurring during our breathing, found on www.bemindful.co.uk when we move, when we are lying down and when we are walking. Mindfulness Practices These practices are often done These come in various forms slowly, giving the attention including the mindful body time to become fully absorbed. scan, mindful walking, mindful These practices can be done for movement, and mindful sitting anything from a few minutes practice. There are podcasts to longer practices of up to an available that can help you and hour. Research tells us that it have been especially designed for is the regular daily practice people affected by blood cancers of mindfulness which is so http://www.abbvie.co.uk/ beneficial and anything from 10- mindfulness.html 30 minutes has been effective in its cultivation. Mindfulness of the We can also be mindful in the soles of the feet activities of everyday life. We While you are standing or sitting, can turn off the phone, TV or gently bring your attention to music and just pay full attention the soles of the feet and start to to sensations when we are, for notice the sensations - whatever example, standing and walking, is happening from moment to sitting down or lying, chopping up moment and remembering that the vegetables, taking a shower or there is no right or wrong way to getting dressed. Maybe walking experience the present moment outside in the park and feeling the so whatever is happening is air and sun or rain on our faces completely fine. Maybe there is and the ground underneath our heat, coolness, moisture, dryness, feet. tingling or numbness or maybe other sensations. The point is There are eight-week courses to just notice whatever is there available in mindfulness from moment to moment. Each provided by trained teachers time that you find your mind has

Helpline freephone 08088 010 444 87 Mindfulness (cont.)

wandered away, which all our uncertainty of a leukaemia minds do, just bring the attention diagnosis. Like anything, some back to the soles of the feet again. people may find it less helpful than others, but generally You can practice this for a few speaking, many people find that seconds or a few minutes. Try it there is something helpful that for yourself. they can take from the practices Mindfulness of and use to support them in daily life. breathing If you are suffering from a mental Find a comfortable position, health condition, you should sitting up or lying down, allowing check with your doctor that this is your body to settle. Become aware appropriate for you right now. of your body in the position that you have chosen and take a couple of breaths. Let go of any tension in the body as you breathe out. Now bring your attention to the movement of the breath in the body and become aware of where you notice it most. Allow your attention to rest on the movement there as you breathe, gently coming back to that area each time your mind wanders away, as it surely will. You can practice this as long or short a time as you have available. Is mindfulness helpful for everybody? Many people find mindfulness helpful and find ways to apply it in their lives which are beneficial, especially when facing the

88 www.leukaemiacare.org.uk Glossary

Allopecia Fatigue Hair loss. Extreme tiredness, which is not alleviated by sleep or rest. Alternative therapies Fatigue can be acute and come on These are treatments used suddenly or chronic and persist. instead of conventional western medicine. Full Blood Count (FBC) A blood test that counts the Antibiotics number of different blood cells. These are used to treat or prevent bacterial infections. They work Holistic Needs Assessment by killing bacteria or preventing (HNA) them from reproducing and This can help identify some of the spreading. physical and psychological needs of patients and ensure patients’ Blood cells needs and management plans are Blood cells have many different met in a timely and appropriate functions including transporting way. oxygen and nutrients to the lungs and tissues, forming blood clots Mindfulness to prevent excess blood loss and Mindfulness is a way of carrying cells and antibodies that approaching life that can help fight infection. with resilience and coping more effectively in the present moment. Chemotherapy A form of cancer treatment that Mucositis uses one or more anticancer Chemotherapy-induced mucositis drugs as part of a standardised causes the mucosal lining of the treatment regime. mouth and gut to waste away and break down forming ulcers, Complementary therapies leading to a sore mouth and These are treatments used diarrhoea. alongside conventional western medicine.

Helpline freephone 08088 010 444 89 Glossary (cont.)

Neuropathy Platelet Also known as parathesia, but A disc-shaped element in the more commonly called pins and blood that assists in blood needles, this is indicated by clotting. During normal blood tingling or numbness on the skin. clotting, the platelets clump together (aggregate). Neutropenia A condition in which the number White blood cell (leukocytes) of neutrophils (a type of white One of the cells the body makes blood cell) in the bloodstream is to help fight infections. There are decreased. several types of white blood cells. The two most common types are Neutrophil the lymphocytes and neutrophils. A type of white blood cell that helps fight infection. If you would like more definitions of terms Red blood cell you may come across The blood cell that carries oxygen. during your blood Red cells contain haemoglobin, cancer journey, you which permits them to transport can order our A - Z of oxygen (and carbon dioxide). Leukaemia by calling Patient Services on 08088 010 444

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90 www.leukaemiacare.org.uk Useful contacts and further support

There are a number of helpful Bloodwise sources to support you during Bloodwise is the leading charity your diagnosis, treatment and into the research of blood cancers. beyond, including: They offer support to patients, ••Your haematologist and their family and friends through healthcare team patient services. ••Your family and friends 020 7504 2200 ••Your psychologist (ask your www.bloodwise.org.uk haematologist or CNS for a Cancer Research UK referral) Cancer Research UK is a leading Reliable online sources, •• charity dedicated to cancer such as Leukaemia Care research. Charitable organisations •• 0808 800 4040 There are a number of www.cancerresearchuk.org organisations, including ourselves, who provide expert Macmillan advice and information. Macmillan provides free practical, Leukaemia Care medical and financial support for people facing cancer. We are a charity dedicated to 0808 808 0000 supporting anyone affected by www.macmillan.org.uk the diagnosis of any blood cancer. We provide emotional support Maggie’s Centres through a range of support Maggie’s offers free practical, services including a helpline, emotional and social support patient and carer conferences, to people with cancer and their support group, informative families and friends. website, one-to-one buddy service and high-quality patient 0300 123 1801 information. We also have a nurse www.maggiescentres.org on our helpline for any medical Citizens Advice Bureau (CAB) queries relating to your diagnosis. Offers advice on benefits and Helpline: 08088 010 444 financial assistance. www.leukaemiacare.org.uk [email protected] 08444 111 444 www.adviceguide.org.uk

Helpline freephone 08088 010 444 91 Leukaemia Care is a national charity dedicated to providing information, advice and support to anyone affected by a blood cancer.

Around 34,000 new cases of blood cancer are diagnosed in the UK each year. We are here to support you, whether you’re a patient, carer or family member.

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Helpline: 08088 010 444 (free from landlines and all major mobile networks) Office Line: 01905 755977 www.leukaemiacare.org.uk [email protected]

Leukaemia Care, One Birch Court, Blackpole East, Worcester, WR3 8SG Registered charity 259483 and SC039207