This information is an extract from the booklet Understanding chemotherapy. You may find the full booklet helpful. We can send you a copy free see page 11. Contents Feelings and emotions How you can help yourself Finding information Keeping a journal or blog Planning Exercise How others can help Support groups Family and friends Counselling Information Complementary therapies Relaxation Work Financial help and benefits Insurance Help with NHS costs After treatment More information and support Feelings and emotions You may find that having cancer, needing chemotherapy treatment, and the effect that this has on your life can sometimes make you feel anxious, afraid or depressed. Often these feelings can be triggered by something seemingly trivial, such as having to change your usual daily routine to fit in with the treatments. It may also be caused by something more obvious, such as particular side effects of the treatment or the risk of infertility. Macmillan and Cancerbackup have merged. Together we provide free, high quality information for all. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk 1 of 11
It s important to know that you re not alone. It s natural to have these feelings from time to time during your treatment. Some people may feel low or depressed due to side effects such as hair loss and tiredness. It can also be very discouraging if the cancer is taking time to respond to the drugs. Your emotional well-being is as important as your physical health. Everyone needs support during difficult times and having cancer is one of the most stressful situations you re likely to face. You might find it helps to talk over your feelings with someone you feel close to. Some people find it helpful to discuss their feelings with a professional counsellor, a spiritual leader or member of their religious faith. If you feel comfortable discussing your worries with your doctor, nurse or a social worker, they can help you to bring your feelings out into the open and can find you further help if necessary. Sometimes a doctor may suggest some medicine to help with depression or anxiety (anti-depressant or anti-anxiety drugs). These can be useful to help you cope with what is going on. Our booklet, The emotional effects of cancer, may help you cope with your feelings and emotions. How you can help yourself There are things you can do which may make your course of chemotherapy treatment easier to cope with. People often talk about having a positive attitude. This doesn t mean being cheerful and happy all the time. Everyone feels down or worried now and again, and accepting that you will have these feelings is part of being positive. It can help to know what your treatment involves, what side effects to expect, what can be done about them, and what should be reported to your doctor or chemotherapy nurse. Page 2 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
Finding information Knowing more about your disease and its treatment can often help you to feel more in control of your life. You may have questions about the effect the chemotherapy is having both on the cancer and your life in general. Getting information and answers to these questions can help to reduce anxiety. If you don t understand the explanation, then keep asking questions until you do. Most doctors and nurses are very willing to answer any questions and to keep you up-to-date on your progress. You may find you have different questions each time you visit the hospital. Keeping a journal or blog Some people find it helpful to keep a diary, journal or blog (online journal) of their treatment. This can have a practical use, as well as letting you express your feelings. If you record any side effects you have this will help you to tell your doctor or nurse how things have been for you in between your appointments. It will also help you to see how things change when a different medicine is used to help. Changes to reduce side effects can often be made by using this kind of information. As your journal develops, you may find it encouraging to look back at how you coped during previous difficult times. A private diary also allows you to put in writing anything that may be difficult for you to talk about. Sometimes it can be used to help you prepare to speak to someone about a problem, or it can be used to describe anger or sadness that you feel you can t express in any other way. Visit our online community at macmillan.org.uk/ community to chat to people, read blogs and view videos. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 3 of 11
Planning Try to plan your time so that you can still do the things that are important to you. Although it s helpful to try to keep up with your social life, don t be afraid to rest if you need to. Exercise Taking some gentle exercise such as walking can help to reduce feelings of fatigue. It can also help to raise your spirits and release tension. How others can help There may be times when you want to be alone with your thoughts. At other times being able to share your feelings can be a relief. Support groups Family and friends Support groups can put you in touch with other people having similar treatment. Talking with other people can be a good way of discussing feelings, and you can also pick up some useful coping tips. We can give you details of your local support groups. Our booklet Talking about your cancer will also help you to find ways of discussing your cancer. Family and friends often want to help you. However, they may find it difficult to grasp exactly what you are going through. Good communication is really important. Just at a time when you feel your friends and family should be helping, they may stand back and wait for you to make the first move. This is often because they are worried they may say the wrong thing, or they think you may want to cope alone. They may also be feeling quite emotional themselves. Page 4 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
Counselling Try to be open and honest about how your treatment is going and how you feel about it. Misunderstandings can then be avoided and others are given the chance to show their love and support. Our booklet, Lost for words, written for friends and relatives of people with cancer, looks at the difficulties people may have when talking about cancer. Many people find that counselling can help them to face the problems of living with cancer. Counsellors help people talk through and sort out problems and confusion. Emotional difficulties linked to cancer are not always easy to talk about and are often hardest to share with the people you are closest to. Talking with a trained counsellor who is not personally involved in your situation can help to untangle thoughts, feelings and ideas. Information Our cancer support specialists on 0808 808 00 00 can give you and your family information about all aspects of cancer and chemotherapy, including the practical and emotional problems of living with them. Complementary therapies Complementary therapies can help to improve people s quality of life and well-being and can sometimes help to reduce the side effects of chemotherapy. Many people find that complementary therapies or practices can help them to feel stronger and more confident in dealing with chemotherapy. Many of these therapies can be used safely alongside conventional treatments and medicines, but it s important to check the particular treatment with your doctor. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 5 of 11
We have a booklet about complementary therapies, with information on how to contact registered practitioners. You may want to try complementary therapies, such as meditation or visualisation, to help you feel less anxious. Other therapies, such as gentle massage, may also help. Some hospitals offer complementary therapies alongside conventional care. These may include aromatherapy, massage, relaxation, visualisation, guided imagery techniques and acupuncture. Relaxation Deep relaxation is a skill that can be learned. It can be used to help relieve muscle tension and stress, reduce tiredness and pain, improve sleep and peace of mind, and regain control of your emotions. You can learn relaxation techniques from books or tapes, which you can get online, from your local library, book shop and some chemists. Therapists and groups throughout the country also teach particular relaxation methods. Work You may need to take time off work during your treatment and for a while afterwards. It can be hard to judge if and when to go back to work; your decision is likely to depend mainly on the type of work you do and how much your income is affected. It s important to do what is right for you. Getting back into your normal routine can be very helpful and you may want to go back to work as soon as possible. Many people find that going back to work as soon as they feel strong enough gives them a chance to forget their worries and become involved with their job and colleagues again. It can be helpful to talk to your employer about the situation you may be able to work part-time or job share. On the other hand it can take a long time to recover fully from treatment for cancer, and it may be many months before you feel ready to return to work. It is important not to feel pressurised into taking on too much, too soon. Page 6 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
Your consultant, GP or specialist nurse can help you decide when and if you should go back to work. If you have a disability caused by the cancer, your employer can get specialist help to enable you to work. Our booklets, Work and cancer and Self-employment and cancer, give information about employment rights, disability rights and financial issues for people with cancer. Financial help and benefits If you are employed and unable to work, your employer can pay you Statutory Sick Pay (SSP) for a maximum of 28 weeks. If you are still unable to work after this period, you may be able to claim Employment and Support Allowance (ESA). There are two parts to ESA: a contributory part which is dependent on how much National Insurance you have paid, and a means tested part which is dependent on your income and savings. You may get either or both parts. ESA is paid at a basic rate for the first 13 weeks. During this time you ll have to take part in a work capability assessment and attend a work focused interview. After the 13-week period you ll be assessed and placed into one of two groups. If you are found to have limited capability for work you ll be placed in the support group and if you are found not to have limited capability for work you ll be placed in the work related activity group. If you are receiving radiotherapy or intravenous chemotherapy (by injection into a vein), you will automatically be assessed as having limited capability for work and will be placed in the support group. People in the work related activity group will have to attend five more work focused interviews, which aim to help them get back into work. An additional payment will be paid to anyone in the support group and a small additional payment will be paid to anyone in the work related activity group. If you are self-employed you can claim ESA as long as you have paid the correct level of National Insurance contributions. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 7 of 11
People who have not paid these may qualify for ESA under the means tested route. If you are ill and not able to claim, remember to ask your GP for a medical certificate for the period of your illness. If you re in hospital, ask your doctor or nurse for a certificate to cover the time that you are an inpatient. This is necessary if you need to claim a benefit. You may qualify for Disability Living Allowance (DLA) if you are under 65, or for Attendance Allowance (AA) if you are over 65. There is a fast-track claim for people who may not live longer than six months. People who claim under this special rule need to get their doctor to complete a form for either benefit. It s impossible to tell exactly how long someone may live and many people with advanced cancer may be entitled to this benefit. Special rules payments of AA and the DLA care component are reviewed after three years. Information about benefits and financial help For more information about benefits and financial support please call us on 0808 808 00 00. You may also find our booklet Help with the cost of cancer useful. You can find out more about benefits from your local Citizens Advice Bureau or by calling the Benefit Enquiry Line on 0800 882200. You can also visit the Department for Work and Pensions website at dwp.gov.uk Direct payments If your assessment shows you need social services, you may be entitled to get direct payments from your local authority. This means that you are given payments to organise social services yourself, rather than the local social services paying for and organising them for you. You can get more information about direct payments from the Department of Health website at dh.gov.uk or from your local authority. Insurance After having treatment for cancer, it can be more difficult to get life or travel insurance. An Independent Financial Adviser (IFA) can help you with life insurance and can find the best deal for your particular situation. You can find a local IFA Page 8 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
by referral from family or friends, looking in your phone book, or by contacting The Personal Finance Society or Independent Financial Advisers Promotions Ltd (IFAP). We can send you a booklet about travel and cancer and have a list of travel insurance companies who offer insurance to people with medical conditions including cancer. This information is also on our website. Help with NHS costs Prescription charges England Cancer is on the list of conditions which make you exempt from paying prescription charges. You can apply for an exemption certificate, which lasts for five years, by asking your hospital doctor or GP for the relevant form. Northern Ireland and Wales Prescriptions are free. Scotland Prescription charges are currently being phased out to be ended by 2011. If you need more than five prescription items in four months or more than 14 items in one year, you can cut costs by buying a Prescription Prepayment Certificate for four months or a year. You can get this by filling in form EC95, available from your pharmacist, doctor or local NHS board. You will need to show the pharmacist your Prescription Pre-payment Certificate when you collect your prescription. If you re on a low income, you can apply on the Lowincome Scheme claim form HCS1 for a certificate for free prescriptions and services or reduced costs (available at scotland.gov.uk, Jobcentre Plus offices, NHS hospitals, some GPs and dentists). Other health costs If you are on a low income you may be entitled to help with NHS costs including travel expenses for hospital treatment and wigs. You can get more information from the Benefit Enquiry Line (0800 882200) or the Department of Work and Pensions website (dwp.gov.uk). The leaflet Are You Entitled to Help With Health Costs? (HC11) is available from post offices, staff at the hospital, Jobcentre Plus offices, or Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 9 of 11
you can download it from dwp.gov.uk If you live in Scotland visit scotland.gov.uk for further information. You don t have to pay for prescriptions or other NHS costs, if: you are 60 or over After treatment you are under 16, or under 19 and in full-time education you, or a member of your family, receive Income Support, the Guarantee Credit part of Pension Credit, income-based Jobseeker s Allowance or, in certain cases, Working Tax Credit or Child Tax Credit you are pregnant or have had a baby in the last 12 months you receive a War Disablement Pension and need prescriptions for your war injury you are a hospital inpatient. After your chemotherapy has finished you will have regular check-ups and possibly scans or x-rays. These will probably continue for several years. If you have any problems, or notice any new symptoms in between your appointments, let your doctor know as soon as possible. Many people find that they get very anxious before their appointment. This is natural and it may help to get support from family, friends, or one of the cancer organisations. When your treatment is finished, you may feel it s time to get back to normal. However, this can sometimes be one of the hardest times to cope with. Recovery times vary and no one can say for sure how long you should take to get over the treatment and its effects. The end of the visits to hospital for treatment can leave you feeling like you re on your own. Many people find that they feel very low and emotional at this time, when they had expected to be able to put the cancer and the treatment behind them. This may be the time when you need the most support. Support is available if you would like it. Page 10 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
More information and support If you have any questions about cancer, ask Macmillan. If you need support, ask Macmillan. Or if you just want someone to talk to, ask Macmillan. Our cancer support specialists are here for everyone living with cancer, whatever you need. Call free on 0808 808 00 00, Monday Friday, 9am 8pm www.macmillan.org.uk We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. Macmillan cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites to which we link. Macmillan Cancer Support 2010. Registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Registered office 89 Albert Embankment, London, SE1 7UQ REVISED IN JUNE 2010 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 11 of 11