Your feelings about having lymphoedema

The lymphoedema swelling may be a constant reminder to you that you have had treatment for cancer - something you perhaps had hoped to forget as much as possible. If the swelling is severe, you may feel embarrassed and self-conscious about it.

Try not to shut yourself away. Almost certainly, the swelling is more noticeable to you than it is to others. If you are nervous about going out in public at first, ask someone you know to come with you. You will probably find that no one makes an issue of your lymphoedema.

As your lymphoedema becomes more under control, and as you get more used to it, you will almost certainly find that your feelings of embarrassment lessen. You will probably realise that true friends care for you because of the person you are, not for your appearance, and this will increase your self-confidence and make you feel more in control of your life.

If you have very obvious swelling, some people will inevitably be curious, especially children. Many people find it helpful to rehearse what they will say in such situations. Your lymphoedema therapist or nurse may be able to help you plan and practise your responses. Or you may prefer to talk about it with other people who have lymphoedema.

You could decide how much you want to say about your condition, whether to refer to your cancer or treatment. Once you have a prepared response, you are less likely to be thrown by any remark or question directed to you. You may even find yourself actively helping others to overcome any awkwardness they may feel.

You may feel very angry that you have to deal with the burden and inconvenience of lymphoedema. You may have been expecting to be feeling well again and leading a normal life.

If your lymphoedema began shortly after your cancer treatment, it may seem like the last straw, on top of all the physical and emotional upheaval caused by having cancer. It is quite natural for you to feel angry about it; you may find the anger becomes less as you get used to the daily treatment routine and the swelling begins to respond to the treatment.

Having lymphoedema means extra effort in taking care of yourself. Following your treatment routine can take up a lot of time. You may feel resentful about this, especially if other people seem free to get on with their daily lives.

Try not to bottle up your feelings but talk to the people close to you about how you feel. Between you, you may come up with ways in which they can help. For example, someone could learn to carry out the lymphatic massage for you, give you lifts to your treatment centre or perhaps help with the shopping, so that you do not have to carry heavy loads.

Once you are used to the routine of treating your lymphoedema and following the guidelines for controlling it, you will probably find it less of a burden and feel more able to enjoy your normal activities. Some people find the swelling eases within a short time, while for others it can take many months, but don’t give up - there is nearly always some improvement with treatment.

Lymphoedema is an ongoing problem and at times you are likely to feel low or depressed about your situation. You may find it helpful to talk to other people who have lymphoedema, and the nurses at Cancerbackup| can give you information about support groups in your area. Your doctor may be able to refer you for help.

We have a separate section which discusses the emotional effects of cancer|.

Lymphoedema may affect the way you feel about yourself, which may have a negative impact on your relationships with other people. People often need to feel happy with their bodies in order to have a fulfilling sex life. Fear that a partner - even a long-standing one - may be put off by the lymphoedema can make some people scared of physical relationships. The lymphoedema may also make it physically difficult to have sex.

Often, talking about how you are feeling can help to relieve any worries you have about how you look. Some people are able to talk with their partner, others prefer to discuss things with a counsellor or sexual therapist. Your doctor or nurse can make a referral to a therapist for you if this would be helpful.

Our section on sexuality and cancer| discusses these issues and how to cope with them in more detail.