Life after transplant for acute lymphoblastic leukaemia (ALL)

It takes a long time to get over intensive treatment such as a stem cell or bone marrow transplant. At first you may have mixed feelings about going home. Your nurse will give you numbers to call if you have any questions or worries and you’ll have regular follow up appointments.

Your central line usually stays in for a little while after treatment finishes. Your nurse can use it for blood tests at your follow up appointments. And some people still need regular platelets or blood transfusions.

It’s likely that you will get at least one infection after your transplant. This means you’ll need to stay in hospital again. This can be quite upsetting for you if you haven’t been home for long. Let the team know if you are struggling to cope, as there are ways that people can help you.   

You’ll start to feel stronger and more active again as time passes. But it can take a while to get back to normal. It might be as long as a year before you really feel you are on the road to recovery.

Eating and drinking

During your transplant your treatment team may have advised you to make changes to your diet to reduce the chance of picking up an infection from your food. You might need to follow the same advice for the first few months after a transplant. The advice can vary slightly between hospitals.  

The general advice is to:

• eat only freshly cooked food
• avoid undercooked eggs
• avoid soft cheese, blue cheese and creamy cakes and puddings
• avoid shellfish
• wash salads and fruit very thoroughly
• avoid takeaways and fast food restaurants (or make sure they make you freshly cooked food)
• don't drink too much alcohol

Too much alcohol can slow the recovery of your bone marrow. Ask your doctor if alcohol will interfere with any drugs you are taking.

Your social life

Reduce your risk of infection by:

• avoiding crowded public places (cinemas or public transport at peak times for example)
• avoiding anyone with infections such as chicken pox or measles

Once your white cell count has recovered enough you will be able to go just about anywhere. This takes roughly 3 to 6 months, but check with your doctor or specialist nurse to be sure.

College, university or work

You won’t be able to go back to normal daily activity until your white blood cell levels are almost normal. It's a good idea to start part time until you have got some of your strength back. Talk to your employer, teacher or tutor about this. 

You might also want to think about whether you would like them to talk to your colleagues or peers about your illness and treatment. Or you might prefer to talk to them yourself.

Sport and physical activity

Physical activity is a great way to help you feel better, both physically and emotionally. It can help to reduce tiredness (fatigue) after treatment. How much you can do will depend on how fit you are and how you feel. You will probably have days when you don’t have so much energy. Listen to your body and build up slowly.

Gentle walking is suitable for most people to start with. If you don't have a central line, you can do most contact sports and swimming once your blood counts are back to normal and you feel up to it.

Holidays and travel

Speak to your doctor before booking a holiday. Most people can go away but to begin with it’s best to stay in the UK. Your doctor can make sure the treatment team near to where you are going are aware of you so they can support you if you have any problems. You can’t travel by aeroplane if your platelets are too low.

After the first year, you can usually go where you like. But you should avoid some vaccinations. And following an allogenic transplant , you should not have live vaccinations.

Whenever you go away from the hospital that treated you it is helpful to take a doctor's letter with you. This gives a summary of the treatment you have had and any medicines you are taking. It includes a contact phone number for emergencies.

It's important to arrange travel insurance if you want to travel abroad. It’s there to help you get compensation for anything that might go wrong with your travel. Its 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. 

Your sex life

A transplant does not physically stop you from having your normal sex life. But you may find that your sex drive and self esteem are low for a while. This may be due to:

• the treatment
• lack of strength and energy
• worry about the future
• feeling upset about losing your fertility
• lack of confidence after the changes in your appearance that a transplant causes at first (for example, hair loss)
• getting used to changes in sex hormone levels

Some of these effects take time to get used to. Some will get better on their own. For example your hair will grow back and you will put on weight. It is important to give yourself time to recover. It can also help to keep talking to your partner, if you have one, about how you are both feeling.

You can always talk to your nurse or doctor if you are having any problems with your sex life. They can help you get the support and advice you may need.

Your feelings

You’ve been through a lot and it can take time to get back to a new sense of normal. It can be difficult to get back to work and family life. You may feel frustrated that you don’t feel as well as you hoped as quickly as you would like. There may be set backs along the way, and you may be in and out of hospital for a while.

After going through such intensive treatment some people may feel a new enthusiasm for life and appreciate the simple things. Other people may find it difficult to cope with and make sense of what they have been through. Some people may have anxiety or depression.

It’s important to talk things through with people around you or your doctors or nurses. They can help you get more help if you need it. Many people find it helpful to have counselling.