A guide to helping with life after having a transplant for Hodgkin lymphoma.
Gradually you will put on weight and start to feel stronger. But it takes a long time to get over intensive treatment such as a bone marrow or stem cell transplant. It is not unusual to have to go back into hospital once or twice. And it may be a year before you really feel you are on the road to recovery.
You have your central line in until you no longer need platelet transfusions or blood transfusions. You will probably get at least one infection that needs hospital treatment. It takes a while to get back to normal in a few areas of your life.
Eating and drinking
For the first few months, to help reduce the risk of infection:
- eat only freshly cooked food
- avoid undercooked eggs
- avoid soft cheese and blue cheese
- avoid creamy cakes and puddings
- wash salads and fruit very thoroughly
- avoid takeaways and fast food restaurants
Don't drink more than the recommended level of alcohol (2 units a day). Too much alcohol can slow the recovery of your bone marrow. Ask your doctor if alcohol will interfere with any medicines you are taking.
Your social life
Reduce your risk of infection by:
- avoiding crowded public places, such as cinemas or public transport
- avoiding anyone who you know has come into contact 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 nurse to be sure.
School, college or work
You will not 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 about your illness and treatment. Or you might prefer to talk to them yourself.
Sport and exercise
Exercise will help you to get your strength back. But while your platelet level is still low, you have to be careful about getting any knocks. Choose something gentle like walking. When your white blood cell level is normal you can go swimming.
Once all your blood counts are getting back to normal you can do just about whatever you like.
Holidays and travel
If you want to go abroad, talk to your doctors. They may 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 can’t travel by plane if your platelets are too low.
After the first year, you can go where you like. But you need to avoid having some vaccinations. Your doctor can advise you about this.
Whenever you go away, it is helpful to carry a doctor's letter. The letter gives information about your treatment and a phone number for emergencies.
To start with, you are likely to have difficulty arranging travel insurance. Most companies will cover you for loss of luggage, delays and cancellations by the tour company. But at first, they won't want to cover you for the cost of medical treatment abroad. They also won't want to provide insurance that covers cancellation of your trip.
If a company agrees to insure you, they will almost certainly ask for a letter from your consultant about your fitness to travel. As the time since your treatment increases, you will find getting travel insurance easier.
Your sex life
A transplant doesn't physically stop you from having your normal sex life. But you might find that your sex drive is 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)
- 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 both feel.