Coping with acute lymphoblastic leukaemia (ALL)

Coping with a diagnosis of acute lymphoblastic leukaemia (ALL) can be overwhelming. Help and support are available, including things you can do, people that can help and ways to cope.

Your feelings

You might have a number of different feelings when you're told you have cancer.

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.

How ALL affects you physically

Many of the physical effects you have are mainly due to the treatment. So they will usually improve once the treatment ends. One of the most common problems is tiredness. This can continue for some months after treatment.

You will lose your hair. Many people find hair loss difficult to cope with. But your hair will start to grow back within a few weeks of finishing treatment. Remember your hair may not grow back exactly the same as it was before. The colour may be slightly different, and it may be straighter or curlier than it was before.

Other physical changes will depend on the treatment you have had. For example, if you had total body radiation your skin will be more sensitive and you will need to protect it from the sun.

If you had an allogenic transplant you are at risk of a side effect called graft versus host disease (GvHD). The donor cells start to attack your own tissues, and can cause symptoms such as diarrhoea, weight loss and skin rashes. You take immunosuppressants if you develop GvHD to calm down the immune reaction.

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
• having a calendar with all appointments
• having goals
• planning enjoyable things around weeks that might be emotionally difficult for you

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.

Specialist nurses can help you 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 about your cancer.

Dietitians can help you with any eating or nutritional problems you have during treatment.

Support groups

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

Getting back to normal after ALL treatment

People often think that once they have had their last treatment everything goes back to normal. You might feel frustrated that it takes time to get over the treatment. But you need to give yourself time to recover.

You may be thinking about work, college, university, going on holiday, or just planning for the future. Remember that it is better to feel really ready to go back to work or school than to try and go back too early and have to take more time off. Think about how you feel both physically and emotionally. Many people find the diagnosis and treatment draining. You may want to think about going back part time at first. Then you can build up to full time when you feel you can manage it.

Going back to college, university or work

Some people worry about going back to work, college or university, especially if they have had a long time away. You may be worried that everything will have changed or that people won’t know what to say to you. You can talk to your tutor or employer about whether you would like them to tell people about your leukaemia or whether you would like to do it yourself. There is no right or wrong way of doing this. Some people find it easier if everyone knows before they get there so that they don’t have to explain over and over again. Others prefer to tell people in their own time.

Travel

Planning a holiday is a great way to relax and help you recover. For most people, once you have finished treatment and your blood count is back to normal you can go away. Talk to your doctors if you want to go abroad because there are times when it is advisable for you not to travel.

If you want to travel abroad it’s very important to get travel insurance. It’s there to help you get compensation for anything that might go wrong with your travel. Its also there if you need to claim back compensation for any medical treatment you have while you are in another country.

Getting travel insurance when you have or have had cancer can be difficult and expensive. This is because insurance companies only make money from people who don't claim. Because you’ve been ill, they think you’re more likely to claim. For example, you might need to cancel your trip or have medical treatment abroad. This makes you a bigger risk to the company. So they might:

• refuse to give you travel insurance
• give you travel insurance, but it’s likely to be very expensive

If a company agrees to insure you, they will almost certainly ask for a letter from your consultant about your fitness to travel. 

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.