Steve Hartley, who had a stem cell transplant, with his family

Taking control of your recovery and living well

Being away from the security of the hospital might bring up feelings of helplessness and anxiety. On this page, we share advice on managing these feelings, getting in control of your recovery and maybe even trying something new after a stem cell transplant.

What’s on this page?

How can I take control of my recovery?

Recovering from a stem cell transplant might be one of the hardest things you’ll ever do. But remember that you don’t have to do everything on your own and other people can help in many ways.

If you are now back at home, it’s time to start getting comfortable with your recovery. It’s the first step in regaining some independence in your life, helping you to find a new sense of normality and get into a healthy lifestyle.

Most people already have lots of things to think about when it comes to recovery, but organisation and control might not be one of them. By recording some information in a diary or a note on your phone, it will help you to:

  • set recovery goals
  • create reminders for yourself
  • check your progress.
Kate and her family

The more in control you feel as a person, the more positive an experience it is.

Kate, who had a stem cell transplant to treat aplastic anaemia. You can read her story on our blog.

Setting goals

Breaking down your big recovery targets into smaller, more manageable goals will help you to feel in control. When you can see improvement every day, it builds your confidence and self-esteem.

Feel free to set as many or few goals as you want. Make sure to choose goals you can see yourself feeling comfortable managing at any given moment.

Your goal might be something like:

  • making sure you take your medication for a week without forgetting
  • going for slightly longer walks or increasing your step count each day
  • having a shower and getting dressed.

Remember to give yourself credit for the things you achieve. It’s easy to keep looking ahead to the next step, the next goal. But this might leave you feeling like you’re always striving for something – take time to notice and appreciate what you have done, and the progress you have made.

British Transplant games
Georgi (left) at the British Transplant Games

I think it’s really important to always have some kind of goal, even if it’s just to get out of bed that day.

Georgi, who had a stem cell transplant to treat acute lymphoblasic leukaemia (ALL)

Exercise goals

Being active reduces fatigue and improves your physical strength. Exercising and fresh air also improves your mental health. Research shows regular exercise can reduce stress, relieve anxiety and improve self-esteem.

It's important to not overdo it, as your fitness levels will have reduced during your treatment. Set yourself small goals and build on them gradually over time.

For more information, see our page on exercise and keeping active.

I'm a Nordic walking leader, I do Tai Chi, I take an Age UK group out for social walks. Now I’m probably more active than I ever was before cancer.

Mary, who had a stem cell transplant to treat acute lymphoblastic leukaemia (ALL)

Sleep goals

Many of us know that things like stress and anxiety can make sleep more difficult. However, poor sleep can also contribute to a mental health problem developing, or make an existing one worse.

Not only do we feel better after a good night’s sleep, but sleeping also helps with recovery after transplant. If you track and record your sleep, you can look back at times when problems occurred. This will help your medical team spot patterns and find ways to help.

For more information on sleep hygiene, see our page on managing fatigue.

I have to make adjustments – for example I’ve recently been on placement, and they let me start a bit later in the day, and that’s so I can have enough sleep to really function throughout the day.

Wendy, who had a stem cell transplant to treat Hodgkin lymphoma

Diet goals

People lose weight after transplant for many different reasons. During recovery in particular, your body needs more nutrients than usual to help grow and repair your cells.

To help with weight loss and recovery, you might set a goal to eat a certain number of calories per day, or aim to eat five portions of fruit and vegetables daily. Eating healthily should help you feel both physically and mentally stronger.

For more information, see our page on diet after a stem cell transplant.

It took me quite a long time to be able to have three meals a day.

Darren, who had a stem cell transplant to treat peripheral T-cell lymphoma

Goals for drinking fluids

Your body’s cells need water to work, including your brain cells and your new stem cells. It’s important to keep yourself hydrated during recovery.

Try to always have a water bottle with you, so you can drink the recommended amount. Doctors give different recommendations to different people, but generally we should drink 1.5 to 2 litres of fluids daily.

It might be easier to drink smaller amounts more often, but you can track your overall fluid intake by noting every time you finish a glass or bottle.

Setting reminders and taking notes

Sometimes it can feel like you have so much to remember during your recovery. It might help to come up with a strategy to help you keep on top of different things.

Appointments

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After your transplant, you will need to visit the out-patient department regularly. Doctors will check everything is going well and possibly adjust your medication. You’ll also have regular tests to measure your blood count, liver and kidney function, and check for viruses.

For more information, see our page about hospital visits after transplant.

Medication

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It can feel hard to remember which medication to take and when. You will also go through changes to your medication which might mean adjusting to a new schedule. Putting reminders in your phone, calendar or diary will help make sure you don’t miss anything.

Medical team

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During your transplant journey, you’re at the centre of a large medical team responsible for giving you the best possible care. However, it can sometimes be difficult to keep track of everybody’s name and what they do. You might find it helpful to write down the name and contact details of everyone in your team.

I feel like I have to be my own stock taker at home. This is how many drugs I have got and this how long it’s going to last me.

Georgi, who had a stem cell transplant to treat acute lymphoblastic leukaemia (ALL)

Recording and checking your progress

Keeping track of your progress in all different aspects of your life might sound like a difficult task. But seeing the improvements can really help with your confidence during recovery.

Mental wellbeing

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Some days you will feel physically and mentally drained, but there will also be good days when you feel strong and happy. You might find great benefits to recording your emotional wellbeing and how your feelings are changing. As well as gaining a sense of progress, it also highlights when you need extra support from friends, family or a professional.

If you feel like you need more support for your mental health, see our page on finding support.

Physical wellbeing

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It’s so helpful for your medical team if you can accurately recall when you had certain side effects and how strong they were. With this information, they can adjust your medication accordingly. Get into the habit of recording any changes you experience – when did they happen? How bad were they? Can you record the intensity using a 1 to 10 scale?

Medical data

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To check your new immune system is working properly, your medical team will regularly count the different types of cells that make up your blood, as well as other factors. They record the results every time you visit the hospital. They will be able to monitor your progress by looking at your:

  • White blood cell count – These cells make up your immune system and fight infections.
  • Haemoglobin – This substance carries oxygen around your body. You can find it in red blood cells (the most common type of blood cell).
  • Platelets – These help the blood to clot after trauma or an injury, cut or graze.
  • Chimerism level – The number of blood cells that come from your donor compared to your own. Ideally, your chimerism would have 100% donor cells.
  • Temperature – A high temperature can be an early sign you might have an infection.
  • Blood pressure – After a transplant, you’re at increased risk of high blood pressure. Doctors will monitor this at every check-up.
Darren

Because you're taking your temperature twice a day, you're constantly looking for and being reminded of, ‘am I all right this morning?’ I feel hot – is it just because the heating's on too high? I've got too many jumpers on?

Darren, who had a stem cell transplant to treat peripheral T-cell lymphoma

Try something new

As part of setting goals and seeing your progress, you might find your priorities in life have changed – or you might just want a good reason to get out of the house.

You might find trying something new can help your recovery and improve your perspective on the future. We’ve shared a few suggestions below, but try not to push yourself too far. Like all of your goals, it’s about small steps at first.

Find a new hobby

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You might find you have a lot more free time during your recovery. You could try something like:

  • painting
  • reading
  • doing crafts
  • learning a language
  • playing a new game
  • cooking.

When you feel stronger, you could also meet new people and socialise through local groups or evening classes. You can find many of these groups via social media, so have a look at what’s available locally in person, as well as clubs and groups online.

If I am blessed and I'm lucky enough to have a second chance at life, I want to be able to live that life as well and as meaningfully as I possibly can.

Darren, who had a stem cell transplant to treat peripheral T-cell lymphoma

Play a sport

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Whether it’s restarting an old sport or trying a new one, being active will help your recovery.

It doesn’t have to be anything too competitive, but socialising and exercising by doing something you enjoy will help improve your mental and physical wellbeing. Finding your local parkrun could be a great place to start. You should also be able to find something at your local sports centre or through social media.

For more information, see our page on exercise and keeping active.

Compete in the British Transplant Games

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Held annually in a different UK city each year, the Games consist of over 20 different events. Anyone who has had a transplant can compete, no matter what age.

If you fancy training for your big day and bringing home a gold medal, visit our page on the British Transplant Games. You can register your interest to join Team Anthony Nolan at the Games by emailing involve@anthonynolan.org

Volunteer with a charity

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Charities always welcome people who want to help. It can feel rewarding to support charities you feel connected to, perhaps to help other people who need stem cell transplants.

For more information about opportunities, visit our page about volunteering with Anthony Nolan.

I gave up work and I do a lot of voluntary work now. That’s what I want to do, I want to give back.

Mary, who had a stem cell transplant to treat acute lymphoblastic leukaemia (ALL)

Fundraise for a cause you care about

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Not everyone will be quite ready to run a marathon just yet, but there are plenty of other things you can do to raise money for a good cause.

For more information about what you can do, head over to our page of tips and ideas for fundraising.

Write a blog or share on social media

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Some people find it therapeutic to write about and share their experiences of stem cell transplant, both good and bad. However, others don’t like the idea of putting themselves on public display – only share if you feel comfortable doing it.

You can try using the free versions of platforms like Blogger or WordPress, as well as writing a blog for Anthony Nolan.

Consider a change of career

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For many reasons, you might not be able to return to the same job after your transplant.

Some people take this opportunity to think about what they would really like to do instead. It might involve applying your skills to a new situation, or taking some time to retrain for something totally new.

For more information on finding a new job, see our page on returning to work.

Stem Cell recipient, Sophie, before and after transaplant
Sophie

This experience has changed my outlook on life. You can’t afford to spend your time with people who don’t make you happy or doing things that don’t make you happy.

Sophie, who had a stem cell transplant to treat acute lymphoblastic leukaemia (ALL)

Information last updated: 30/10/2024

Next review due: 30/10/2027