Coping with hairy cell leukaemia

It can be very difficult to cope with a diagnosis of HCL, both practically and emotionally. You are likely to be feeling upset and confused.

When you are diagnosed with HCL you should have access to specialist cancer doctors (called haematologists) and nurses, who can answer your questions about the disease and its treatment.

It is important that you have enough information to make decisions about your treatment, if that is what you want to do. At every stage, you and your relatives should have clear and complete information from your doctors and nurses about all aspects of your leukaemia and treatment.

Many people have very definite ideas about what leukaemia means. But often what they are thinking about is acute leukaemia rather than a chronic leukaemia. You have probably never heard of hairy cell leukaemia.

You may find that you have to do quite a bit of educating other people about what your condition means. Remember that HCL can be so slow to develop that for many people it can be some time before they need treatment. And the treatment available now means that it is so well controlled that it may not be the illness that ends their life.

Adjusting to any new situation in life takes a while. Give yourself that time. There is no right or wrong way to approach this. But it will help if you have someone to share your feelings with. Even when you are not sure how you feel yourself.

As well as the support that is available to you at the hospital, there are leukaemia and cancer support groups around the country. Here you can discuss your feelings and fears with others who know what it is like to hear that you have leukaemia and have to cope with treatment.

Your cancer nurse might be able to tell you about local support groups. Or look at our leukaemia organisations page for organisations that can put you in touch with a support group.

As well as coping with the fear and anxiety that a diagnosis of HCL brings, you have to work out how to manage practically. There may be money matters to sort out. Who do you tell that you have hairy cell leukaemia? And how do you find the words? There may be young children to consider.

The coping with cancer section of CancerHelp UK contains lots of information you may find helpful. There are sections on

• Your feelings
• Talking to people: who and what to tell
• Talking to children
• How else can you help yourself?
• Who else can help?
• Financial support, including Government benefits and charity grants