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Coping with acute myeloid leukaemia

Men and women discussing acute myeloid leukaemia

This page tells you about coping with acute myeloid leukaemia (AML). You can find the following information

 

A quick guide to what's on this page

Coping with acute myeloid leukaemia

Coping with a diagnosis of leukaemia can be difficult, both practically and emotionally. It can be especially difficult with acute leukaemia because you often get ill suddenly, and have to start treatment quickly. There is usually very little time to take in information and start to cope with it. At first, you are likely to feel very upset, frightened and confused.

Coping practically with AML

As well as coping with how you feel emotionally, you will have to work out how to manage practically. There may be money matters to sort out. Who do you tell that you have leukaemia? You may also have children to think about.

Remember you don’t need to sort everything out at once. It may take some time to sort each issue. Do ask for help if you need it. Your doctor or nurse will be able to put you in touch with people specially trained in supporting people with cancer, for example, specialist nurses. These people are there to help, so use them if you feel you need to.

The coping with cancer section has lots of helpful information. There are sections about your feelings, helping yourself, how others can help you, sex and sexuality, and financial support (including information about benefits and sick pay, mortgages, pensions, loans and insurance).

 

CR PDF Icon You can view and print the quick guides for all the pages in the living with AML section.

 

 

Coping with your AML diagnosis

Coping with a diagnosis of leukaemia can be difficult, both practically and emotionally. It can be especially difficult with acute leukaemia because you often get ill suddenly, and have to start treatment quickly. There is usually very little time to take in information and start to cope with it.

At first, you are likely to feel very upset, frightened and confused. You may feel overwhelmed, and feel that things are out of control. It is important to get the right information about the type of leukaemia you have and the treatment you need. People who are well informed about their illness are usually more able to make decisions and cope with what happens.

 

How AML affects you physically

Many of the physical problems you have will be due to your treatment. So they should improve once the treatment ends. One of the most common problems people have is tiredness. This can continue for months after treatment. There is more about tiredness with cancer (fatigue) in our section about coping physically with cancer.

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 that your hair may not grow back exactly the same as it was – the colour may be slightly different and it may be straighter or curlier than before.

Other physical changes will depend on the treatment you have had. For example, if you had total body irradiation, your skin will be more sensitive and you will need to take care in the sun.

There is information in this section about

 

Coping practically with AML

As well as coping with how you feel emotionally, you will need to work out how to manage practically. There may be money matters to sort out. Who do you tell that you have cancer? And how do you find the words? You may also have children to think about.

Remember that you don’t need to sort everything out at once. It may take some time to sort each issue. Do ask for help if you need it. Your doctor or nurse will be able to put you in touch with people specially trained in supporting people with cancer, for example, specialist nurses. These people are there to help, so use them if you feel you need to.

 

Getting back to normal after AML treatment

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

You may be thinking about work, school, 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.

Some people worry about going back to work or school, 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 teacher 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. If you have had intensive treatment, look in the life after transplant section for specific information. 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. Have a look in the travelling with cancer section, which has information about how cancer and its treatment might affect your travel plans, taking medicines abroad and some travelling tips.

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 will not want to cover you for the cost of medical treatment abroad. They also won’t give cover for if you need to cancel 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.

There is information about travel insurance in the financial matters section.

 

Getting information about coping with AML

The coping with cancer section contains lots of information you may find helpful. There are sections about

If you would like more information about coping with leukaemia, contact our cancer information nurses.

You can also contact some of the acute leukaemia organisations. They will be happy to help. They often have free factsheets and booklets they can send to you. They may also be able to put you in touch with a support group. Or they can tell you about counselling, and help you find other sources of emotional support in your area. You can also look at our acute leukaemia reading list.

If you want to find people to share experiences with online, you could use CancerChat, our online forum.

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Updated: 22 February 2014