It takes a long time to get over intensive treatment such as a stem cell or bone marrow transplant. You might need to make adjustments in various parts of your life.
You might have to go back into hospital once or twice. And it could be a year before you really feel you are on the road to recovery. Feeling tired and fatigued is normal for the first few months at least.
You still have your central line in until you no longer need platelet or blood transfusions. Unfortunately, you will probably get at least one infection that means you have to be treated at the hospital.
Eating and drinking
You will probably lose weight during your treatment. But gradually you put it back on and start to feel stronger. To avoid infection for the first few months:
- eat only freshly cooked food
- avoid undercooked eggs
- avoid soft cheeses and creamy cakes and puddings
- wash salads and fruit very thoroughly
- avoid takeaways and fast food restaurants
- drink alcohol in moderation
To keep the risk of infection as low as possible, you should avoid
- crowded cinemas, restaurants and public transport
- anyone who has come into contact with an infectious disease such as chicken pox or measles
Once your white cell count has recovered enough, you can go just about anywhere. This takes roughly 3 to 6 months. But you must check with your doctor to be sure.
Work, college or school
You won't be able to get back to your usual daily life until your white cell count is nearing normal.
It is a good idea to go back to work, college or school part time at first, until you get some of your strength back. Talk to your employer, tutor or teacher about this. You might also want to think about whether you would like them to talk to your colleagues or other students about your illness and treatment. Or you might prefer to do this yourself.
Sport and exercise
Exercise helps you to get your strength back. But while your platelet count is still low, you have to be careful about getting any knocks. Choose a gentle type of exercise, like walking. When your white cell count has improved, you could go swimming.
Once all your blood counts are getting back to normal you can do just about whatever you like. Talk to your doctor or nurse to get advice about this.
Holidays and travel
Talk to your doctors if you want to go abroad in the first year after treatment. They might want to contact a treatment centre near to where you are going and let them know you are in the area, just in case you have any problems.
You cannot fly if your platelets are too low.
For a year after your transplant you should not sit in the sun. It could cause a skin reaction. And if you have graft versus host disease (GVHD) of the skin, it could make it worse. Wear long sleeves, a hat and trousers in the sun. And use a high factor sun cream.
After the first year you can go where you like. But you should avoid some types of vaccination.
Whenever you go away from the hospital that treated you, it is helpful to carry a doctor's letter saying what you had done and giving the phone number of your medical team for emergencies.
To start with, you might have difficulty arranging travel insurance. Most companies cover you for loss of luggage, delays and cancellations by the tour company. But they won’t want to cover you for the cost of medical treatment abroad, or for cancellations by you. If a company will insure you, they will almost certainly ask for a letter from your consultant about your fitness to travel.
Remember that you can travel without insurance. But you are taking a risk. If you travel in Europe, get a European Health Insurance Card (EHIC). This covers you for medical treatment within the European Economic Area (EEA). But you won’t be covered if you need to be flown home, or for the cost of extras such as trips by ambulance.
Your sex life
A transplant doesn't physically stop you from having a normal sex life. But you might find that your sex drive is low for a while. This could be due to:
- the treatment
- lack of strength and energy
- worry about the future
- feeling upset about losing your fertility
- lack of confidence about changes in your appearance that a transplant causes (hair and weight loss, for example)
- getting used to changes in levels of sex hormones
Some of these take time to get used to. Some get better on their own. For example, your hair will grow back and you will put on weight. The most important thing is to give yourself time. And if you have a partner, keep talking about how you are both feeling.