Coping and support when you have hairy cell leukaemia

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

Your feelings

You might have a number of different feelings when you're told you have cancer. It can be a shock to hear you have cancer when you have had no symptoms. Or that you have cancer and don’t need to start treatment.

You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty
• sad

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.

Helping yourself

You may be 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 with watch and wait

It can be very difficult to find out you have cancer but to not have any treatment. You might feel worried that you aren't doing anything to stop the cancer. And it can be hard to cope with uncertainty when you are waiting for test results and check ups.

You might also worry more than you did about your general health, and any new symptoms you have.

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.

Support at home for you and your family

GP and nursing support

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary, depending on where you live.

District nurses

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections
• check temperature, blood pressure and breathing
• clean and dress wounds
• monitor or set up drips
• provide emotional support
• teach basic caring skills to family members where needed
• get special equipment such as hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. If you have a hospital specialist nurse, they can tell you what is locally available to you.

Social workers

Social workers can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels

Your social worker can also help with money matters by checking you get all the benefits you’re entitled to. Or they can arrange charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your specialist nurse or your GP to refer you.

Support groups

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