Coping and support when you have chronic lymphocytic leukaemia (CLL)

Coping with a long term condition like 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.

It’s normal to feel anxious at first. But remember that CLL can be so slow to develop that some people don't ever need treatment. Even for people who do need treatment, the leukaemia can be very well controlled for many years.

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 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 or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

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

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

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.

You can also do practical things such as:

• making lists to help you remember things and questions for your team

• having a calendar with all appointments

• having goals

• planning enjoyable things around weeks that might be emotionally difficult for you

There is research into cancer that shows focusing on certain lifestyle changes in whatever time you have before treatment starts can help you:

• cope better with its side effects
• improve your long term health

These lifestyle changes are:

• eating a varied diet

• being physically active

• taking care of your mental health

We have information on things you can do to help you feel more in control of your physical and mental health during this time.

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 or be afraid they will say the wrong thing.

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 other than 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.

Cancer chat

You can chat with other people affected by cancer in our online forum. 

Specialist CLL nurses

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.

For some people with CLL, specialist nurses are your first point of call if you have any questions or concerns. You can find out at the hospital if you have a specialist nurse. Make sure you have their telephone number if so.

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.

Recommending reliable websites to your friends and family that explain about CLL could help.

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.

It might reassure you to know that doctors use watch and wait for many people with cancer. For example, according to Blood Cancer UK, around 27,000 people are having watch and wait in the UK. So, there are lots of other people in a similar situation. 

Coping with uncertainty

Preparing yourself for the uncertainty you might experience with a CLL diagnosis is also important. You and your medical team might not know if or when you need treatment. There might be some uncertainty about how well treatment will work and what side effects that you might have.

Some people cope with this uncertainty and the loss of control by focusing on taking it ‘one day at a time’. Finding a balance between preparation and accepting what is outside your control can also be helpful.

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 have had certain targeted cancer drugs your skin will be more sensitive for a while.

It's important to keep safe in the sun when you have CLL. The following tips can help you enjoy the sun safely:

• Spend time in the shade, especially between 11am and 3pm in the UK.

• Cover up with clothes, a wide-brimmed hat and UV protection sunglasses.

• Apply sunscreen with at least SPF 30 and 4 or 5 stars. Use it generously, reapply regularly and use together with shade and clothing.

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, GP 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.

Living your normal life with CLL

For many people with CLL, the goal of treatment is making sure you can live as close to your normal life as possible. It can help to set some goals. These can be whatever is important to you, such as:

• spending time with family and friends

• getting back to work

• doing activities that you enjoy

This might feel a lot at first. You can always break down your goals to more manageable steps.

Talk to your doctors about how they expect your condition and treatment to make you feel. And if there is anything you should avoid.

Working together with your treatment team can help you cope with a diagnosis of a long term condition like CLL. It can take time to adapt to living with it and your feelings can change from day to day.

Support groups

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