Coping with acute myeloid leukaemia (AML)

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:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty

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 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.

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 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.

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. 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.

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 trickier than others

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 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.

Getting back to normal after AML 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, 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.

Going back to school or work

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.

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.

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.

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. Getting help early with these things can mean that they don’t become a big issue later.

Our coping practically section has more information about all these issues.