What is leukaemia?

Leukaemia is a cancer of the blood cells. Blood cells are produced by the bone marrow.

There are four main types of leukaemia: acute myeloid (AML), acute lymphoblastic (ALL), chronic lymphocytic (CLL) and chronic myeloid (CML).

Each type of leukaemia has its own characteristics and treatment.

The bone marrow

Bone marrow is a spongy material that fills some of our bones and produces stem cells. Stem cells are cells at a very early stage of development. All the blood cells in the body develop from stem cells. A type of stem cell called a myeloid stem cell can make:

red blood cells, which carry oxygen to all cells in the body
white blood cells called granulocytes, which are essential for fighting infection
platelets, which help the blood to clot and control bleeding.

There are different types of white blood cell. The two main types are granulocytes and lymphocytes and these work together to fight infection.

Blood cells go through various stages of development before they are fully mature and able to work properly. Normally, while blood cells are developing, they stay inside the bone marrow. Once they are mature, they leave the bone marrow and enter the bloodstream.

Some types of blood cells only live for a few hours or a few days, so the bone marrow is constantly making new cells. The bone marrow normally makes millions of blood cells every day. This
process is usually controlled - with cells dividing to produce new cells as they are needed.

What is acute myeloblastic leukaemia?

Normally, blood cells are made in the bone marrow in an orderly and controlled way. In acute myeloid leukaemia (AML), this process gets out of control and many abnormal leukaemia cells are made. These cells are immature and aren't able to develop into normal functioning blood cells. They are sometimes called blast cells.

AML is an overproduction of an early myeloid cell. In most types of AML the leukaemia cells are immature white cells. But, in some less common types of AML, too many immature platelets or immature red blood cells are made.

The immature cells fill up the bone marrow, taking up space that is needed to make normal blood cells. Some leukaemia cells 'spill over' into the blood and circulate around the body in the
6 bloodstream. These leukaemia cells don't mature, and so don't work properly. This leads to an increased risk of infection as well as symptoms such as anaemia and bruising caused by fewer
healthy red blood cells and platelets being made.

Your feelings about having AML

Most people feel overwhelmed when they are told they have leukaemia. Many different emotions arise which can cause confusion and frequent mood swings. You might not have all the feelings discussed below or experience them in the same order. This does not mean, however, that you are not coping with your illness.

These emotions are part of the process that many people go through in trying to come to terms with their illness. Partners, family members and friends often experience similar feelings and frequently need as much support and guidance in coping with their feelings as you do.

Reactions differ from one person to another - there is no right or wrong way to feel. Some of the common emotional effects are mentioned below, however, reactions vary and people have different emotions at different times.

Our booklet on the emotional effects of cancer discusses the feelings and emotions that you may experience and has advice on how to cope with them.

Shock and disbelief
Fear and uncertainty
Denial
Anger
Blame and guilt
Resentment
Withdrawal and isolation

Shock and disbelief

'I can't believe it' / 'It can't be true'

This is often the immediate reaction when leukaemia is diagnosed. You may feel numb, unable to believe what is happening or to express any emotion. You may find that you can take in only a small amount of information and so you have to keep asking the same questions over and over again, or you need to be told the same bits of information repeatedly. This need for repetition is a common reaction to shock.

Some people may find that their feelings of disbelief make it difficult for them to talk about their illness with their family and friends. Other people may feel an overwhelming urge to discuss it with those around them.

You might find our booklet on talking about your cancer helpful.

Fear and uncertainty

'Am I going to die?'/ 'Will I be in pain?'

Leukaemia is a frightening word surrounded by fears and myths. One of the greatest fears expressed by almost all newly diagnosed patients is 'Am I going to die?'.

In fact, nowadays some people with CML are cured with treatment. Many people with CML have the leukaemia controlled for many years and live an almost normal life for most of that time.

'Will I be in pain?' and 'Will any pain be unbearable?' are other common fears. In fact, many people with leukaemia feel no pain at all. For those who do, there are many modern drugs and other techniques which are very successful at relieving pain or keeping it under control. Our booklet on controlling cancer pain describes these methods.

Many people are anxious about their treatment: whether or not it will work and how to cope with possible side effects. It is best to discuss your individual treatment and possible outcomes in detail with your doctor.

You may like to take a close friend or relative to the appointment with you. If you are feeling upset, they may be able to remember details of the consultation which you might have forgotten. You may want them to ask some of the questions you yourself might be hesitant of putting to the doctor.

Some people are afraid of the hospital itself. It can be a frightening place, especially if you have never been in one before, but talk about your fears to your doctor, who should be able to reassure you.

You may find that doctors can't answer your questions fully, or that their answers sound vague. It is often impossible to say for certain whether someone can be cured or whether the leukaemia  may come back. Doctors know from past experience approximately how many people will benefit from a certain treatment, but it is impossible to predict the future for a particular person. Many people find this uncertainty hard to live with - not knowing whether or not you are cured or how long the leukaemia can be controlled for can be disturbing.

Uncertainty about the future can cause a lot of tension, but fears are often worse than the reality. Gaining some knowledge about your illness can be reassuring. Discussing what you have found
out with your family and friends can help to relieve tension caused by unnecessary worry.

Denial

'There's nothing really wrong with me' / 'I haven't got leukaemia'

Many people cope with their illness by not wanting to know anything about it, or not wanting to talk about it. If that's the way you feel, then just say quite firmly to people that you would prefer not to talk about your illness, at least for the time being.

Sometimes, however, it is the other way round. You may find that it is your family and friends who are denying your illness. They appear to ignore the fact that you have leukaemia, perhaps by playing down your anxieties and symptoms or deliberately changing the subject. If this upsets or hurts you because you want them to support you by sharing what you feel, try telling them. Start perhaps by reassuring them that you do know what is happening and that it will help you if you can talk to them about your illness.

Anger

'Why me of all people?'/ 'And why right now?'

Anger can hide other feelings such as fear or sadness and you may direct your anger at the people who are closest to you and at the doctors and nurses who are caring for you. It is understandable that you may be deeply upset by many aspects of your illness and there is no need to feel guilty about your angry thoughts or irritable moods. However, relatives and friends may not always realise that your anger is really directed at your illness and not against them. If you can, it may be helpful to tell them this at a time when you are not feeling quite so angry; or if you would find that difficult, perhaps you could show them this booklet.

Blame and guilt

'If I hadn't... this would never have happened'

Sometimes people blame themselves or other people for their illness, trying to find reasons why it should have happened to them. This may be because we often feel better if we know why something has happened, but since in most cases it is impossible to know exactly what has caused a person's leukaemia, there is no reason for you to feel that you are to blame.

Resentment

'It's all right for you, you haven't got to put up with this'

Understandably, you may be feeling resentful and miserable because you have leukaemia while other people are well. Similar feelings of resentment may crop up from time to time during the course of your illness and treatment for a variety of reasons. Relatives too can sometimes resent the changes your illness makes to their lives.

It is usually helpful to bring these feelings out into the open so that they can be aired and discussed. Keeping your resentment to yourself can make everyone feel angry and guilty.

Withdrawal and isolation

'Please leave me alone'

There may be times during your illness when you want to be left alone to sort out your thoughts and emotions. This can be hard for your family and friends who want to share this difficult time with you. It will make it easier for them to cope, however, if you reassure them that although you may not feel like discussing your illness at the moment, you will talk to them about it when you are ready.

Sometimes depression can stop you wanting to talk. If you or your family think you may be depressed, discuss this with your GP, who can refer you to a doctor or counsellor who specialises in the emotional problems of people with cancer or prescribe a course of antidepressant drugs.