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.
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:
- frightened and uncertain
- angry and resentful
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.
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 donor stem cells 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.
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.
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.
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.
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.
To start with, you are likely to have difficulty arranging travel insurance. Most companies will cover you for loss of luggage, delays and cancellations by the tour company. But at first, they won't want to cover you for the cost of medical treatment abroad. They also won’t give insurance that covers cancelling your trip.
If a company agrees to insure you, they will almost certainly ask for a letter from your consultant about your fitness to travel. As time passes since your treatment, you will find getting travel insurance easier.
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.
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
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.