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Coping with hairy cell leukaemia

Men and women discussing hairy cell leukaemia

This page tells you about coping with hairy cell leukaemia (HCL). You can find information about

 

A quick guide to what's on this page

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.

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.

Remember that HCL can be so slow to develop that for some 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.

As well as the support that is available to you at the hospital, there are leukaemia and cancer support groups around the country. Your cancer nurse might be able to tell you about local support groups. Or you may want to contact one of the chronic leukaemia organisations. You can also contact our cancer information nurses for support.

Our coping with cancer section has lots of information about coping practically and emotionally that you may find helpful.

 

CR PDF Icon You can view and print the quick guides for all the pages in the Living with hairy cell leukaemia section.

 

 

Coping with your diagnosis

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 blood cancer doctors (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.

 

Learning about hairy cell leukaemia and its 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.

 

Coping physically

HCL may cause physical changes in your body such as weight loss. The treatments may cause side effects such as sickness or skin rashes. These changes can be very difficult to cope with and may affect the way you feel about yourself. Such changes can affect your self esteem and the way you relate to other people, especially close family and friends. 

Another problem you may have to cope with is feeling very tired and lethargic a lot of the time, especially during and for a while after treatment or if the leukaemia is advanced. There is information about tiredness (fatigue) and cancer in the section about coping physically with cancer.

If you are having a sexual relationship, one or all of these changes may affect your sex life. There is information about how cancer can affect your sex life in the coping with cancer section.

 

Coping practically

As well as coping with the worry and anxiety that a diagnosis of leukaemia brings, you may also have to work out how to manage practically. There may be money matters to sort out. You may need information about financial support, such as benefits, sick pay and grants. Our section on coping practically has information about these issues.  

Who do you tell that you have cancer? And how do you find the words? We have information about talking to people about your cancer.

Just try to remember that you don't have to sort everything out at once. It may take some time to deal with each issue. Do ask for help if you need it though. It is likely that your doctor or specialist nurse will know who you can contact to get some help and they can put you in touch with people specially trained in supporting those with cancer. These people are there to help and want you to feel that you have support. So use them if you feel you need to.

 

More information on coping with HCL

The coping with cancer section has lots of helpful information. There are sections about

If you would like more detailed information about coping with hairy cell leukaemia, contact one of the chronic leukaemia organisations. They will be happy to help. They often have free factsheets and booklets they can send to you. There is also a chronic leukaemia reading list.

You can also contact our cancer information nurses. They would be happy to help.

You can also find details of counselling organisations, that can tell you more about counselling and help you find sources of emotional support in your area.

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.

If you want to find people to share experiences with online, you could use CancerChat, our online forum. 

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Updated: 16 April 2015