Coping and support when you have acute lymphoblastic leukaemia (ALL)

Coping with a diagnosis of acute lymphoblastic leukaemia (ALL) can be overwhelming. Help and support are available for you and your family. There are things you can do, and specialists who can help you with ways to cope.

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.

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. 

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.

Cancer Chat

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

Clinical Nurse Specialists

You will have a clinical nurse specialist (CNS) who will support you throughout your treatment for ALL. If you have a stem cell transplant you’ll also have a transplant specialist nurse.

Your specialist nurse is your main contact. You can call your specialist nurse if you have questions or worries and they can help you with any information you don't understand. They can also give you emotional and psychological support. They can recommend support services such as a psychiatrist, social worker or counsellor and help you contact them.

Support organisations and resources

There are lots of organisations, support groups, books, videos and other resources to help you cope with ALL and its treatment.

Spiritual support

Some people find great comfort in religion. You might find it helpful to talk to:

• a local minister
• a hospital chaplain
• a religious leader of your faith

How ALL affects you physically

ALL and its treatment may cause physical changes in your body. Many of the physical effects you have will be due to your treatment. So they will often improve once the treatment ends. Your doctor or specialist nurse will help you manage any changes. They can refer you to other health professionals such as:

• dieticians
• physiotherapists

One of the most common problems is tiredness (fatigue ). This can continue for some months after treatment.

You can 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 your hair may not grow back exactly the same as it was before. The colour may be slightly different, and it may be straighter or curlier than it was before.

Other physical changes will depend on the treatment you have had. For example, if you had total body radiation your skin will be more sensitive and you will need to protect it from the sun.

If you had an allogenic transplant you are at risk of a side effect called graft versus host disease (GvHD). The donor cells start to attack your own tissues, and can cause symptoms such as diarrhoea, weight loss and skin rashes. You take immunosuppressants if you develop GvHD to calm down the immune reaction.

Relationships and sex

ALL treatment can affect your sex life in many ways. This includes infertility and having less interest in sex. 

Coping practically and financially

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. 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.

Getting back to normal after ALL 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 really ready to go back to work 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 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.

Support at home for you and your family

You might need some care and support at home due to ALL or its treatment. A lot of practical and emotional support is available to you. 

GP and community 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.

Community or district nurse

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 hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Community specialist palliative care nurse

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.

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.

Support for family, friends and caregivers

A cancer diagnosis affects family and friends too.