It takes a long time to get over intensive treatment such as a stem cell or bone marrow transplant for Hodgkin lymphoma.
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
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. Too much alcohol can slow the recovery of your bone marrow. Ask your doctor if alcohol will interfere with any medicines you are taking.
In general, government guidelines recommend that:
- you drink no more than 14 units of alcohol a week
- if you drink this amount, to spread this evenly over at least 3 days
- to have some alcohol free days in the week to help cut down on the amount you drink
Your social life
Reduce your risk of infection by avoiding:
- crowded public places, such as cinemas or public transport
- 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, 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 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 and 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.
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.