Coping with CLL 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 CLL.

Your feelings

You might have a number of different feelings when you're told you have cancer. You may feel shocked and upset. You might also feel:

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

You may have some or all of these feelings. Or you might feel totally different. Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all.

Experiencing different feelings is a natural part of coming to terms with cancer. All sorts of feelings are likely to come and go.

Helping yourself

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

Taking in information can be difficult, especially when you have just been diagnosed. 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.

Talking to other people

Talking to your friends and relatives about your cancer 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 and them.

Help your family and friends by letting them know if 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. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Or you may prefer to see a counsellor.

Explaining about your cancer

You might find that you need to explain to people exactly what your condition means. The word leukaemia sounds frightening and many people do not realise that chronic lymphocytic leukaemia is a very slowly developing condition.

Remember that CLL can be so slow to develop that some elderly people don't ever need treatment. Even for people who do need treatment, the leukaemia can be very well controlled for many years.

Support groups

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

Coping physically

Many people with early stage CLL have no symptoms and have a very good quality of life.

You might feel very tired and lethargic a lot of the time, especially after treatment.

Some treatments may cause other side effects such as feeling sick or a skin rash. Other physical changes will depend on the treatment you have had. For example, if you had certain chemotherapy or targeted cancer drugs your skin will be more sensitive for a while and you will need to be more careful in the sun.

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

Practical things you and your family might need to cope with include:

  • money matters
  • financial support, such as benefits, sick pay and grants
  • work issues
  • childcare

Talk to your doctor or specialist nurse to find out who can help. Getting help early with these things can mean that they don’t become a big issue later.

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