Coping with hairy cell leukaemia

Coping with hairy cell leukaemia (HCL) can be difficult.  Help and support are available. There are things you can do, people to help and ways to cope with a diagnosis of HCL.

Helping yourself

You are more able to cope and make decisions if you have information about your type of leukaemia and its treatment. Information also helps you to know what to expect.

Taking in information can be difficult at first. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask and help remember the answers.

Ask your doctors and nurses to explain things again if you need them to.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

Treatment causes side effects. These can be mild or more severe. Tell your doctor or nurse if you have any side effects or if they get worse. They can treat them and help you find ways of coping.

Talking to other people

Talking to your friends and relatives about your leukaemia can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you.

Help your family and friends by letting them know you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone outside your own friends and family.

Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Explaining your leukaemia

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.

Most people have probably never heard of hairy cell leukaemia. So you might have to teach other people about what your condition means.

Remember that hairy cell leukaemia 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 you will probably have a normal life span.

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 can help if you have someone to share your feelings with, even when you are not sure how you feel yourself.

Support groups

You might find it helpful to go to a support group to talk to other people affected by leukaemia or cancer.

NHS Choices has a service that tells you about local information and support.

Leukaemia Care run local support groups for patients and their families affected by any blood cancer including leukaemia.

Coping physically

You might not have any symptoms when you are first diagnosed with hairy cell leukaemia. And you will probably feel well, unless you have other health problems. You might not need to start treatment for some time, possibly years.

Having hairy cell leukaemia can cause physical changes in your body, such as weight loss. The treatments can also cause side effects, such as sickness or skin rashes. You might feel tired and lethargic, especially for a while after treatment or if the leukaemia is more advanced.

These changes can be difficult to cope with and may affect the way you feel about yourself. 

Your doctor or specialist nurse will help you to manage any changes. They can also refer you to other health professionals if needed, such as a dietitian or symptom control team.

Relationships and sex

The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.

Coping practically

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare
• Blue Badge applications
• help with travel costs
• changes to your house

Talk to your doctor or specialist nurse to find out who can help.  You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.