You’ll be able to go home when your blood count has gone up and your risk of infection is reduced. You’ll still need a lot of monitoring and will have to come back to the hospital for regular checks.
The first few months out of hospital
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For the first 2–3 months after leaving hospital, you’ll have frequent blood tests to check your blood count.
You may have to take regular doses of several different drugs. Antibiotics, such as co-trimoxazole (Septrin®), and anti-viral drugs, such as aciclovir, may be given to reduce the risk of infection.
Occasionally you may still need to have blood or platelet transfusions. These can usually be given as a day patient.
If you become unwell, you’ll need to go back into hospital. It’s quite common for this to happen once or twice after high-dose treatment. This is not a major setback, although it can be very worrying for you.
It’s very important to take great care of your health during this time. There are a number of possible problems that might occur because your immunity is reduced. Get in touch with your hospital immediately if you have any of the following symptoms:
feeling cold and shivery
a temperature over 37.5°C (99.5°F) for more than two hours
infections (for example, of the skin or mouth)
breathlessness or breathing difficulties, as it’s particularly important to have these symptoms dealt with quickly
feeling sick (nausea) and being sick (vomiting)
cough or cold symptoms.
Very few people have any major problems after leaving hospital. If possible, however, you should have a discussion with your doctor before you leave hospital about what you should do if anything happens that worries you.
You should always carry a 24-hour hospital contact telephone number with you. If you’re worried, you can ring the hospital at any time of day or night to speak to someone who understands the treatment you’ve had. The doctors and nurses where you had your high-dose treatment would rather be contacted unnecessarily than risk you becoming ill at home.
If you feel unwell and are unable to contact the hospital, get someone to take you back to the hospital immediately.
The first three to six months
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After a few months, your immune system will probably have returned to normal, and the bone marrow will be producing blood cells normally. Occasionally this may take a little longer.
You should continue to be careful, and you’ll still have regular check-ups. You’ll have a higher risk of infection than normal and, very occasionally, some people still need blood transfusions. You may be advised to carry a medical alert card in case of an accident.
When you only need occasional blood tests or infusions, your central line will be taken out.
It’s very important to keep in close contact with your doctors and to discuss any problems or worries with them. This can be a difficult time psychologically, both because you’re starting to return to your normal activities and because you’re still unsure about your health in the longer term.
Your weight and strength should gradually start to recover, and you’ll probably be able to return to work during this period.
You’ll need to have regular check-ups to ensure that you remain well and that there’s no evidence that your cancer or leukaemia has come back. Usually these will take the form of a medical examination, a blood test and possibly x-rays. Eventually, as long as you stay well, these will become yearly visits. You should be able to return to a normal way of life without restrictions.
These check-ups can be unsettling. You’ll probably be anxious about whether the treatment has worked. It often makes it easier if you take a relative or friend along for support. The check-ups are a good opportunity to discuss with your doctor any worries or problems you may have.
We have more information about life after high-dose treatment with stem cell support.