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Produced November 2010 Next revision due November 2012

How do I look after myself during chemotherapy?

Chemotherapy can seem a daunting or even a frightening prospect at first. It can be a difficult time, but it is important to remember that you wont necessarily develop all the problems you will be warned about or which you will hear about from other people. It is important to look after yourself as well as you can while you are on chemotherapy not only physically, but psychologically and emotionally as well. Hopefully some of the following suggestions will help. They fall into three broad categories things you should know about, things you should do and things to think about.

Things you should know about

Know about your lymphoma
Not everyone wants to know all about their condition but it often helps to understand what lymphoma is and what type you have. This can help you to feel more in control of your disease, rather than the other way round. Keep asking questions your medical team wont mind how many times you ask the same question and they would prefer you to do that than to worry. If you look for information in books or on the internet and find something you dont understand or something you want to know more about, the best thing to do is to take a note of it or print it off and bring it with you to your next appointment or chemotherapy session to show your doctor or another member of the team. They will be able to answer your questions about it and explain whether it is relevant to your particular lymphoma or treatment.

Know about your chemotherapy

You might not remember the names of the chemotherapy drugs you are being treated with but it is important that you should know how to get help and advice if you experience any of the side effects they can cause. Your medical team will have explained the possible side effects, such as a sore mouth or hair loss, which you can experience when receiving your particular chemotherapy regime and roughly when to expect them. If you would like further information about side effects of treatment please contact the helpline or look on our website. You should have been given a telephone number you can call 24 hours a day if you are anxious about symptoms or begin to feel unwell while you are receiving chemotherapy keep this number and any other hospital contact numbers with you at all times.
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Some people find that it helps to keep a diary of their treatment. This can make you feel you are progressing, however slowly, towards a goal. You can also keep a record of any side effects you have, which might help the staff to make adjustments to your treatments to avoid these if they can.

Know when you are ill

It is important that you recognise the signs of an infection, which is potentially a serious problem when you are receiving chemotherapy. You will be advised what symptoms to look out for. One symptom is having a high temperature keep a good-quality thermometer in your house or with you when you are away from home and know how to use it. Keep in mind, though, that feeling hot and cold, being shivery or just feeling generally unwell or off-colour can all be signs of infection, even if your temperature is not high. If you are taking steroid drugs it is especially important not to wait until you develop a high temperature before calling your medical team for advice if you feel unwell. It is much better to call the team unnecessarily than to ignore high temperatures or any other symptoms which can be a sign of infection.

Things you should do

Try to avoid getting infections
While receiving chemotherapy you will be more susceptible to infection than usual and if you do pick up an infection (and many people do, in spite of taking precautions) it can become very serious very quickly. Try to avoid close contact with people who have coughs, colds, tummy bugs or contagious diseases such as chickenpox. Dont have any vaccinations unless your doctor has advised you that they are safe. It is important to have a good standard of personal and household hygiene while your blood counts are low. Wash your hands after going to the toilet and after gardening or dealing with pets, and before preparing food. Good food hygiene plays a key part in avoiding getting an infection from food and this is usually all that is required to avoid problems. Some people on more intensive protocols or people whose blood counts have become particularly low need to avoid eating certain foods. This is because these foods carry organisms that are normally harmless but which can cause infections in people whose immune system is run down. You will be advised about what foods to avoid if you are particularly at risk of developing an infection from one of these organisms. We have an information sheet on safe eating when you are neutropenic (when your blood counts are low) ask the helpline if you would like a copy. If you have a Hickman or other indwelling line, you will need to take precautions to stop the site or ports getting infected.

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Despite all these warnings, most people dont have problems with infection. The important thing to remember is that you must not ignore any symptoms of an infection always err on the side of caution and contact your hospital team if you develop a temperature or feel unwell. You can then be treated promptly, before the infection has had the chance to become serious.

Eat well
If you are on steroids (eg prednisolone) as part of your regime you might put weight on but many people find it difficult to maintain their weight or lose weight during their chemotherapy. Your appetite and sense of taste can change when you are having chemotherapy, you can feel nauseous, and your mouth might be sore at times. This all makes it more difficult to eat as much as normal. It is important to try to keep your energy and protein intake as high as possible, however, to aid your recovery. If you have trouble swallowing or with keeping things down or if you just dont know what to eat, ask if you can see a dietitian who can advise you. There are a number of build-up style drinks that they might recommend. We also have information sheets with advice on eating problems during chemotherapy.

Smoking and alcohol

If you possibly can, stop smoking! A combination of the harmful smoke you are breathing into your chest and your decreased immunity to infections is an invitation to chest infections. You could well find that there are times during your chemotherapy when you do not fancy alcoholic drinks, but drinking a moderate amount of alcohol at other times is fine.

Exercise
If you were in the habit of exercising before your treatment you might be able to carry on to some extent if you have the energy and your lymphoma team recommend this. Some sports are best avoided, however, such as high-impact contact sports (such as rugby) and swimming in public swimming pools, so ask your medical team for advice on which exercise is best for you. If you havent exercised before you might find some light exercise makes you feel better. Even a short walk on your better days would be helpful. Progressing from just being able to cross a room to walking down to a local park or the shops will highlight the progress you are making.

Things to think about

One day at a time
It is likely that your mental and physical reserves will be greatly reduced by the presence of the lymphoma and will take a further knock from the chemotherapy. Try not to expect too much of yourself.

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Some people find it helpful to set goals or deadlines and achieving these, however small they might seem, can make you feel as if you are making headway through the treatment. Other people find that goal-setting just adds to the stress and they need to take things a day at a time. You will know how you usually cope best and you should do what works for you. Some people carry on working during their chemotherapy. This can help you to distract yourself from your illness for part of the time but if you are very tired or if your job is physically demanding it just might not be possible to go to work. Let your energy levels guide you and dont push yourself too hard. If you do go to work make sure that your colleagues understand your need for rest and time off and that they should warn you if they have an infection so you can keep your distance from them. It is good to keep up some social life with family and friends during your treatment but, once again, only if you have enough energy and feel well enough. Getting plenty of sleep can help you feel better and you might feel the need to nap during the day again, rest if and when you need to. Keep comfortable, taking special care to protect yourself from the sun or cold weather.

Me! Me! Me!

Try to become a little bit selfish most of us spend a lot of time thinking about other people and about what we can do for them. Let others think about you while you are having your treatment and accept offers of help. Spend a little bit of time concentrating on what you want and what you need and ask for help if you need it. Other people are usually delighted to have the opportunity to do something for you and to know how best they can help. Try not to keep your worries to yourself writing letters or emails, seeing a counsellor or complementary therapist, or joining a support group can all help you feel less isolated and more supported. Even if you have family at home, getting some outside support can be vital. You can always phone our helpline if you would like a chat about anything that is concerning you. If you feel low or depressed during your treatment, that is understandable. Dont feel you have to put on a brave face and bottle things up ask your medical team if you can speak to someone, confide in a friend, or phone our helpline. Treat yourself. At times you will feel just fine. Use these times to have a bit of fun. If you feel able to, spend some social time with family or friends or even snatch a long weekend away at short notice if you can. Take a rest before social occasions if you need to, so that you can enjoy them more.

Looking after yourself

There are some things you will not be able to control during your chemotherapy treatment, but there are many other things that you can control. With the support of your lymphoma team you can work out how you can plan your day-to-day life, your work pattern and social occasions to
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fit round your treatment and how you feel. Factor in time off from work or from other social and family commitments. Rest when you need to, and ask for help with things like childcare, housework, shopping or transport to appointments. Then you can use your energy more productively and look after yourself better during your treatment.

Conclusions
Knowing about your lymphoma and about the treatment you are having can help you feel
more in control and more able to cope with any problems that might arise. Try to look after yourself physically while you are receiving chemotherapy. In particular, look out for any signs of an infection developing and know what to do if you are worried about any symptoms. Dont expect too much of yourself, physically or mentally. Think about yourself ask for any practical or emotional help you feel you need and accept useful offers of help. Some days will be better than others enjoy them when they come along.

Acknowledgements This is a revised version of an article written by Sian Middleton, clinical nurse specialist at Cheltenham Hospital, Gloucestershire, and Dr Jonathan Pattinson, consultant haematologist at Wycombe Hospital, Buckinghamshire. We produce several leaflets about chemotherapy, including information sheets on side effects, nutrition and exercise. Please ask the helpline if you would like any further information on these topics.
About our publications: The Lymphoma Association is committed to the provision of high-quality information for people with lymphoma, their families and friends. We produce our information in accordance with nationally recognised guidelines. These include the DISCERN tool for information about treatments, the NHS Toolkit for producing patient information, and the Campaign for Plain English guidelines. Our publications are written by experienced medical writers, in close collaboration with medical advisors with expertise in the appropriate field. Textbooks and professional journals are consulted to ensure that information is as up to date as possible. References are provided where they have been used. Some publications are written by professionals themselves, acting on guidance provided by the Lymphoma Association. Our publications are reviewed every two years and updated as necessary. Our publications are reviewed by a panel of volunteers with experience of lymphoma. Publications are also reviewed by members of the Lymphoma Association helpline team, who have many years collective experience of supporting those with lymphoma. In some instances, our publications are funded by educational grants from pharmaceutical companies. These sponsors do not have any involvement in the content of a publication. They are not invited to see the content and have no editorial input. Lymphoma Association
Views expressed in this publication are those of the contributors. The Lymphoma Association does not necessarily agree with or endorse the comments included here.

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