Coping with chronic lymphocytic leukaemia (CLL)
This page tells you about coping with chronic lymphocytic leukaemia (CLL). There are sections about
Coping with chronic lymphocytic leukaemia (CLL)
It can be very difficult coping with a diagnosis of leukaemia, both practically and emotionally. You are likely to be feeling very confused and upset at first. The word leukaemia sounds frightening and many people do not realise that chronic lymphocytic leukaemia is a very slowly developing condition. And that many people have a normal life for several years or more after their diagnosis. You may find that you need to explain to people exactly what your condition means.
Coping practically with CLL
As well as coping with how you feel emotionally, you may have to work out how to manage practically. If you are having treatment or the CLL is advanced you may feel very tired. Treatment may also cause other side effects such as feeling sick or skin rashes. Your doctors and specialist nurses can advise you about coping with these. Do ask for help if you need it.
The coping with cancer section has lots of helpful information. There are sections about your feelings, helping yourself and how others can help you, sex and sexuality, and financial support including information about benefits and sick pay, mortgages, pensions, loans and insurance.
You can view and print the quick guides for all the pages in the Living with CLL section.
It can be very difficult coping with a diagnosis of CLL both practically and emotionally. You are likely to be feeling upset and confused. The word leukaemia sounds frightening and many people do not realise that chronic lymphocytic leukaemia is a very slowly developing condition. And that many people have a normal life for several years or more after their diagnosis.
You may find that you need to explain to people exactly what your condition means. 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.
Adjusting to any new situation in life takes a while. Give yourself that time. There is no right or wrong way to approach this and you can find out as much as you feel you need to from your doctors and clinical nurse specialist.
Many people with early stage CLL have no symptoms and have a very good quality of life. If you need treatment, or the CLL is advanced, you may feel very tired and lethargic a lot of the time, especially for a while after treatment. There is information about tiredness (fatigue) and cancer in the section about coping physically with cancer.
Some treatments may cause other side effects such as feeling sick or a skin rash. We have a section about coping with the side effects of cancer drugs. Other physical changes will depend on the treatment you have had. For example, if you had certain chemotherapy or biological therapy drugs your skin will be more sensitive for a while and you will need to be more careful in the sun.
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.
As well as coping with the fear and anxiety that a diagnosis of CLL 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. Who do you tell that you have cancer? And how do you find the words? You may also have children to think about. We have information about talking to people about your cancer and how and what to tell children.
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. 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.
You may need to have access to support staff, such as a dietician. Social workers can help you with information about your entitlement to sick pay and benefits.
The coping with cancer section has lots of helpful information. There are sections about
- Your feelings
- How you can help yourself
- Who else can help you?
- Mortgages, pensions, loans and insurance, including travel insurance
If you would like more detailed information about coping with CLL, contact one of the organisations on our chronic leukaemia organisations list. They will be happy to help. They often have free factsheets and booklets they can send to you.
The organisations may also be able to put you in touch with a support group. At the groups you can discuss your feelings and fears with others who know what it is like to be told that you have leukaemia and have to cope with treatment. Your clinical cancer nurse specialist might be able to tell you about local support groups. We also have a chronic leukaemia reading list.
You can also find details of counselling organisations that can tell you about counselling and help you find sources of emotional support in your area.
Cancer Chat is Cancer Research UK's online discussion forum where you can talk online to other people, share experience and find information.
You can also contact our cancer information nurses. They would be happy to help.
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