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Coping with lymphoedema

This page is about coping with lymphoedema. There is information about

 

A quick guide to what’s on this page

Lymphoedema can affect you practically, physically and emotionally. It can be very difficult to cope with. Most people have a mix of feelings. After finishing treatment people are often glad that they have got through it. At the same time it can feel very unfair when you have got over cancer but then have to cope with a treatment side effect.

You may need to cope with a number of changes to your life, including your appearance and how you feel about yourself. If you work you may need to make changes to your job, especially if it involves doing repetitive movements or standing for long periods. Your employer may be able to make changes to help you carry on.

You may need to plan ahead a bit more, including when you go on holiday, especially if you are going to be sitting for long periods. You may need to try to move around as much as possible.

A healthy, well balanced diet helps to keep you well and maintain a normal weight. This can make it easier to manage your lymphoedema. Exercise can help to keep your weight down and is also an important part of managing lymphoedema.

It is not easy to cope with any long term condition. Do ask for help if you need it. There is a lot of support and advice available. Your doctors and nurses will be able to put you in touch with people specially trained in supporting people with lymphoedema.

 

CR PDF Icon You can view and print the quick guides for all the pages in the Treating lymphoedema section.

 

 

How to cope

Lymphoedema can affect you practically, physically and emotionally. Most people have a mix of feelings. After treatment, people are often glad that they have got through it. But at the same time it can feel very unfair to have to cope with a treatment side effect. Living with any chronic (long term) condition is not easy. Everyone reacts differently and it is important to give yourself time to come to terms with it.

Do ask for help if you need it. There is a lot of support available. Your doctors or nurses will be able to put you in touch with people specially trained in supporting people with lymphoedema. There are services in most areas. How the services are set up and what they offer may vary. And you may need to ask your doctor for a referral.

Learning about your condition can help you to manage it. People who are well informed about their illness and treatment tend to be more able to make decisions and cope with what happens.

Remember that although lymphoedema usually can’t be cured, it can be well controlled. And there are ways of managing it in your daily life so that it becomes part of your daily routine.

 

Changes to your appearance

The impact of this will depend on where you have lymphoedema. But even if you have lymphoedema somewhere that is not visible, the swelling can affect how you feel about yourself. The swollen area may feel heavy, stiff or uncomfortable, reminding you that it is there. You may feel less attractive or find it more difficult to go out and socialise. With time, things get easier but it doesn’t always help to hear this at first.

You may find it difficult when meeting new people. They may ask about the swelling or may notice your sleeve or stocking. It can help to think beforehand about what you want to say if someone asks you questions about the lymphoedema. Remember that you have control and it is up to you how much you explain.

Some people find it helpful to talk to other people with similar experiences. Not everyone wants to do this. But if you do, a number of organisations can put you in touch with other people with lymphoedema.

The Lymphoedema Support Network (LSN) is a national charity offering information and support. You can also share experiences with people who have been through cancer treatment on our online forum Cancer Chat.

 

Diet and exercise

A healthy well balanced diet helps to keep you well and maintain a normal weight. This can make it easier to manage your lymphoedema. But maintaining a healthy weight can be difficult for some people, especially if the lymphoedema makes it difficult for you to move around. If you want to lose weight, ask your lymphoedema specialist or cancer specialist to refer you to a dietician for advice.

Exercise can help with your weight and is also an important part of managing lymphoedema. Your lymphoedema specialist may have suggested an exercise routine. If they haven’t and you don’t normally take regular exercise, talk to your doctor before you start. Generally, it is best to start gently and build up slowly. Walking is often a good way to begin. You can gradually build up the distance and pace.

You need to be careful with any sports that involve repetitive movements or staying in the same position because these could worsen the lymphoedema. Sports that need a lot of muscle strength could also make lymphoedema worse unless you build up gradually. If you develop any pain, aching or swelling, you may be doing too much. Go back to your lymphoedema specialist if you have any concerns.  

 

Your sex life and lymphoedema

Changes in your appearance may make you feel less confident about sex. The swelling can affect the way you feel about yourself and how you think others see you. Try talking to your partner. It can be hard for them to understand unless you explain how you feel. This is a difficult conversation for many people. But if you are able to talk about your worries, it can help you both to gradually get used to your new situation. Then things may feel less awkward. A caring and loving partner can help to ease your concerns.

Talk to your nurse or physiotherapist about how your partner can help and be involved. Some people find that if their partner learns to help with massaging and using touch it can be part of the intimacy that you share.

If you have genital lymphoedema, sexual activity will be more difficult. You may need to think about other ways of gaining pleasure while you have swelling in that area. It may still be possible to have sexual intercourse. But to avoid any pain or tissue damage you may need to be very gentle and take things more slowly. If you have difficulties or are worried about having sex, talk to your lymphoedema specialist for advice.

 

Working

Whether lymphoedema will affect your work depends on your job and where you have swelling. If your job involves doing repetitive things or standing for long periods you may need to change it. Often employers can make physical or practical changes to help you carry on working. Talk to your employer and your lymphoedema specialist to work out what might help.

If you are unable to work you will need to claim benefits. There is information about government benefits in the financial support section. This includes information about who to contact for help with claiming benefits.  

 

Going on holiday

There is no reason why you can’t go on holiday when you have lymphoedema. But getting to and from your holiday may mean sitting still for long periods of time. You need to try to move around as much as possible. If you are travelling by car you may need to stop more often.

If you are flying, try to do leg and arm exercises and get up every hour. You may need to wear a compression garment. Put it on before you get on the plane and try to keep it on for 2 hours after you get off.

Things that may help while you are away include

  • Talking to your doctor about taking antibiotics with you, in case you get an infection
  • Wearing a well fitting elastic (compression) sleeve or stocking when travelling
  • Wearing loose clothing
  • Exercising at least every hour
  • Avoiding extremes of temperature – if possible keep cool
  • Avoiding sunburn
  • Looking after your skin – keep it clean and moisturised
  • Avoiding insect bites – use an insect repellent
  • Cleaning cuts and grazes with antiseptic and covering them
  • Drinking plenty of water
  • Not overdoing it when you are away –- do the same amount of exercise as you would normally
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Updated: 3 April 2014