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.

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.

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 specialist nurses 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. 

Or you may want to see a counsellor.

Cancer chat 

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

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.

Physical problems

AML and its treatment may cause physical changes to your body. Your doctor and specialist nurse can help you manage these changes. They can refer you to see other health professionals such as dietitians and physiotherapists.

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.

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.

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, college, university, going on holiday, or just planning for the future. Remember that it is better to feel 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. It’s 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. As time passes since your treatment, you will find getting travel insurance easier.

Coping practically

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay, prescription costs 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 hospitals have a social worker available for people with cancer.

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life.

You might need to choose where you want to be looked after and who you want to care for you.

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.

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.