Going home from hospital

When your blood counts have reached a safe level, your transplant team will talk to you about going home. You will see your specialist doctor and nurse regularly. Remember that recovery takes time.

Always carry a 24-hour telephone number for your hospital or transplant unit. Contact them immediately if you feel unwell, your temperature rises, or you have any signs of infection.

Your follow-up

You will need to have regular check-ups to ensure that you stay well and that there is no evidence of your cancer or leukaemia returning. Usually you will have a medical examination, blood tests and possibly scans. Eventually, these should become yearly visits. You should be able to return to your normal way of life.

These check-ups can be worrying, as you will probably be anxious about whether the treatment has worked. You can take a relative, friend or partner, if you have one, with you for support. The check-ups are a good opportunity to discuss any worries or problems you may have with your doctor.

Many people go on to make a full recovery with few health problems after a transplant. You will have the support of your transplant team or haematology team during your recovery.

Eating and drinking

Your doctor or nurse can give you information about your diet once you are home. While your immune system is recovering, try to eat a healthy, balanced diet and avoid possible risks of infection from food. They may give you a list of foods to avoid.

Once your immune system is back to normal, you can eat whatever you like. Your dietitian or nurse will give you advice.

Check with your doctor before drinking alcohol. It slows down the recovery of the bone marrow and increases the risk of bleeding. It can also interact with some of the drugs you are taking.

Managing tiredness

Feeling you have little or no energy (fatigue) is very common after this treatment. It can take many months to get your energy back. Recovery is a gradual process, so don’t expect too much of yourself.

We have more information about managing fatigue.

Being more physically active

Being more physically active by taking regular, gentle walks helps keep your muscles toned. While your blood counts are recovering, certain types of exercise will not be suitable. You can ask your specialist about this.

After your blood counts have recovered, you can start doing whatever exercise you prefer. But it is a good idea to increase the amount gradually. Regular exercise can help with your recovery and improve your future health.

Socialising

It is important to spend time with family, friends and your partner, if you have one. You should also do things you enjoy. But try to avoid crowded places until your immune system has recovered. This includes public transport at busy times, shopping centres, cinemas and pubs. After 3 to 6 months, you should be able to have a full social life again.

You should still avoid contact with children who have infectious illnesses such as chicken pox or measles. If you are worried you have been in contact with someone who has an infectious illness, contact your transplant team.

Driving

If you feel very tired, you may find it hard to concentrate and therefore be less alert. Your reaction time will also be reduced.

It is best to avoid driving if you feel like this. Ask a family member, friend or your partner, if you have one, to drive you instead. Ask your transplant team if there is help with transport for hospital appointments.

Some drugs cause side effects that may make it unsafe for you to drive. Speak to your doctor about any concerns you have.

Your sex life

Your treatment does not stop you being able to have sex. But before going home, check with your doctor if there is any reason why you cannot go back to your usual sex life.

It is normal to have a low sex drive after treatment. We have more information about effects on your sex life and tips that may help.

Hormone replacement therapy

Women may have an early menopause because of their treatment. As well as periods stopping, other symptoms include:

  • hot flushes and sweats
  • vaginal dryness
  • mood and concentration changes
  • a low sex drive.

Most of these symptoms can be helped by hormone replacement therapy (HRT). You can talk to your specialist doctor or nurse about this.

The first year out of hospital

By the end of the first year, your immune system should be working well and your bone marrow should be making healthy blood cells. For some people, this may take a little longer so you should continue to be careful. You will still have regular follow-up appointments with your specialist doctor and nurse.

You may still get infections, such as shingles and chest infections. Some people may need to go into hospital to have them treated. Very occasionally, some people still need blood transfusions.

Your weight and strength will gradually recover. When you feel well enough, you may start think about getting back to work or education. Talk to your doctor about this first. It is important not to overdo things.

It is not unusual to find this a challenging time. You may be starting to return to things you did before but still feel anxious about your health. Talk to your doctor and nurse about any concerns or worries you have.

Vaccinations

After this treatment, you lose your immunity to illnesses that you were vaccinated against as a child. You need to have these vaccinations again. You will also need as well as other vaccinations against common infections such as flu. Your specialist doctor will talk to you about this and tell you when to have your vaccinations.

There are some types of vaccines (live vaccines) you need to avoid until your immune system is back to normal. Your haematology doctor will tell you which vaccinations are safe for you to have and which you should avoid.

Holidays and travel

As your immune system recovers and the time between hospital visits get longer, you might think about going on holiday. Talk to your haematology doctor before booking a holiday. They usually advise you not to travel abroad in the first year after treatment.

After this, your immune system should be working well so you should be able to travel abroad. Ask your doctor about any vaccinations you may need.

When you travel, it is helpful to take a letter from your doctor explaining your medical history and giving contact telephone numbers for your hospital.

It can be difficult to get travel insurance if you have cancer, or if you have had cancer before. We have information on travel and cancer that has helpful, practical tips about travelling.

Sun protection

After your transplant, it is important to protect your skin from the sun. Being exposed to sunshine can trigger graft-versus-host reactions. You also have more risk of developing skin cancer.

Use a sun cream with a sun protection factor (SPF) of at least 30, and cover up with clothing and a hat. If you notice any changes to your skin let your doctor know.

Late effects of a donor stem cell transplant

Some treatment side effects may become permanent and others may develop years after treatment has finished. These are called late effects. They may be due to the treatment you had, or because your immune system does not work as well as before.

There are things you can do that may help reduce the risk of late effects, or to help manage them. Always let your doctor know about any problems you have.

  • Eye changes
    Your eyes may become dry and irritated. Using eye drops regularly will help this. You also have more chance of developing a cataract, which is a cloudy patch in the lens of your eye. It can make your vision blurred or dim. Cataracts can be treated with a small operation. Have your eyes checked regularly and tell your doctor if you have any problems with your sight.
  • Underactive thyroid
    Your thyroid gland, which makes the hormone thyroxine, may not work as well. You will have blood tests to check this. Having thyroxine tablets may help.
  • Bone thinning
    The drugs and treatments you have had can increase your risk of developing bone thinning (osteoporosis). Women who have an early menopause are more at risk. Taking HRT can help to protect your bones. You can also ask your doctor if you should take vitamin supplements to help protect your bones. Tell your doctor if you get any problems with your bones. Eating a healthy diet and doing regular weight-bearing exercise, such as walking, will help look after your bones.
  • Effects on the heart
    The treatment may affect the way your heart works. You may have tests to see how your heart is working. If you have pain or tightness in your chest, feel breathless, or notice changes to your heartbeat, tell a doctor straight away. These symptoms can be caused by other conditions but it is important to get them checked by a doctor.
  • Effects on the lungs
    Always tell your doctor if you develop wheezing or a cough, or feel breathless. You should also let them know if any existing breathing problems get worse. If necessary, they can arrange for you to have tests to check your lungs.

Risk of another cancer

After this treatment you have more risk of developing a second cancer. The most common type is skin cancer, so protecting yourself from the sun is very important.

Your transplant team will monitor you closely for the rest of your life. This means that any problems with your health can be found and treated early.

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