Coping and support when you have acute myeloid leukaemia (AML)

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

AML develops fairly quickly, this means that treatment also starts quite quickly. It can feel like you have no time to adjust or think as everything is happening so fast.

You are likely to feel very uncertain and anxious about the future knowing you have cancer. You may find it impossible to think about anything other than having cancer.

Some people say a diagnosis of cancer helps them appreciate ordinary everyday things much more than they did.

Find out about the emotional, physical and practical effects of cancer and how to manage them

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.

You may think you should be talking all this through with your partner, other family members or close friends. But you may find this hard to do.

Or you may want to talk to someone straight away to help you work out how you are feeling.

There is no set way of handling your news, but experiencing different feelings is a natural part of coming to terms with having cancer. These feelings are likely to come and go, some may even come up when you are not expecting it.

Read more about cancer and your emotions

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.

Find out ways to help manage your emotions

You might find it easier to talk to someone other than your own friends and family.

For support and information, you can call the Cancer Research UK information nurses. They can give advice about who can help you and what kind of support is available. Freephone: 0808 800 4040 - Monday to Friday, 9am to 5pm.

Or you may want to see a counsellor.

Read more about talking and counselling

Cancer chat

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

Visit Cancer Chat

Clinical specialist nurses

You will have a clinical nurse specialist (CNS) who will support you throughout your treatment. If you are having a transplant you’ll also have a transplant specialist nurse.

The specialist nurse is very useful for people who have AML. Most people don't know much about AML as it is rare, so your specialist nurse can help you with any information you don't understand. They can also give you emotional and psychological support.

Your specialist nurse is your main contact. They can recommend support services such as a psychiatrist, social worker or counsellor and help you contact them.

Support groups

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

Find out about AML support organisations

Support at home for you and your family

You might need some care and support at home due to your leukaemia or its treatment.  There is practical and emotional support available to you. 

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

• give emotional support

• teach basic caring skills to family members where needed

• get special equipment, such as commodes or bed pans

Community specialist palliative care nurses

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in advice about pain control, sickness and other symptoms of leukaemia. They also give emotional support to you and your carers.

Marie Curie nurses

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

Read more about Marie Curie nurses

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework

• home care assistants for washing and dressing

• meals on wheels

• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about 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 hospital nurse or your GP to refer you.

Local support services

There is usually other help available but services can vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.

Find other resources and support in coping with AML