Claire Mason is a senior physiotherapist at Northern Ireland Cancer Centre, working in haematology with a range of patients, including those who have received a stem cell transplant. Claire shares with us some specialist advice about managing physical health before and after transplant, as well as side effects such as fatigue, and how to take recovery at your own pace.
We know that having a stem cell transplant can change your physical health and daily life – what is your advice for preparing for a transplant?
It is important to do some physical activity, anything you can to help prepare. It can put you in the best physical condition for going into transplant. This is known as prehabilitation and more research is currently being done to show its positive effects.
One perspective is that we all have a ‘strength bank account’: the less activity you do, you get depleted, and if you don’t put some strength back in again before your treatment, then you’re going to use up all your ‘strength bank account’. This can worsen transplant side effects. Ideally you can ‘save’ strength by building it up beforehand for when you need it later.
You can do this with some sort of physical activity, depending on where you’re starting from – which can just be going for a walk. It’s also helpful to do some sort of strengthening work. This doesn’t mean ‘pumping iron’ weights – it can be as simple as sitting down to standing up repeatedly, as if it were an exercise. Strengthening is important and carries into your daily functions, such as lifting things into cupboards, squatting down to get things out of the fridge and more.
If you’re not sure where to start with preparing physically, seek out help. There are great resources out there from Anthony Nolan as well as ‘Move More’ by Macmillan, who can signpost local support. Even if you’re fatigued and can’t do a lot, a small amount is always better than nothing.
What are the potential physical side effects following a stem cell transplant?
Every patient has such an individual response to their treatment and transplant. A common one is experiencing a change in your weight, including muscle mass loss. The loss of muscle mass means it takes a lot more energy to do even the simple things in life such as getting up, showering, or any task where you’re expending energy.
Fatigue is another frequently reported side effect, the severity varying from person to person. It can be made worse if your appetite or taste has been affected which can often leave you lacking in energy.
How long will these side effects last?
It’s difficult to say exactly what’s ‘normal’ but it depends on your treatment and how your body has been affected.
Once your blood counts come up again and your new immune system kicks in, your symptoms will slowly start to improve. Some patients feel that at around three months, they start to notice improvements. Hopefully you’ll be less fatigued and may notice you’ve built up some strength through your recovery phase, starting to adjust to life after transplant and eating better.
What support and guidance can a physiotherapist provide?
A physiotherapist can provide guidance and advice to the individual patient and their needs. Doing small things can really add up – for example, just getting out of bed and spending time in your chair is important while in hospital so you are using your postural muscles. Walking around the ward when you are allowed to also builds up energy for getting home. It’s not very exciting, but it can all add up!
The more patients move in hospital, the more they will be able to do the things they want to do at home. At Northern Ireland Cancer Centre, where we offer an inpatient service, my role is about giving guidance and encouragement to do physical activity while you’re going through a transplant. It’s such an important part of the transplant recovery experience, alongside nutrition and sleep. As long as your immune system has started to recover, we know that keeping active and out of bed can help limit your risk of developing an opportunistic chest infection.
I had one patient who did three minutes on the bike every day and she just loved the psychological boost she got from that. It gave her ownership over something – it helped her fatigue too, which carried through to when she got home. There is an exercise bike in each of the transplant rooms on the ward here. It’s all about people knowing that it is safe to do physical activity and gentle strengthening, tailored to where the person is at in their transplant journey. It’s important to check with whoever is looking after you on the ward that day, that your blood results, particularly your platelets, are at a safe level to exercise. Your healthcare team will help to work this out for you.
How can physical exercise and rehabilitation help after transplant?
Physical activity is linked to improved quality of life as well as a reduction in some side effects, namely fatigue. It’s more than the physical side – it’s about ownership, taking some control back and doing something positive for yourself.
Even if you’re not into traditional ‘exercise’, a little bit of physical activity can help. If you’ve had a rough time, it can give you something to focus on and have a positive mental health impact too. The more activity you do, then hopefully the more your confidence will come back, and you can do the things you enjoy more often.
Fatigue is one of the most common symptoms that patients face. How can patients manage fatigue?
Everyone is likely to have fatigue to some degree. We are lucky that we have occupational therapy here that can give more specialist advice, as well as strategies in how to help.
It’s best to avoid doing everything in the morning as this may make you exhausted for the rest of the day. It’s important to pace tasks out into small nuggets of activity, and then rest afterwards. It’s good to be motivated and want to do things yourself, but there are times when it is better to ask for some help. For example, someone to help you do the shopping, if this is something that really takes it out of you.
Within that, even if you’re tired, some of those periods are recommended to be spent doing some form of physical activity and strengthening. This can be getting out for a short walk, even 10 minutes – you need to start somewhere to help with the fatigue. The phrase ‘rest up until you feel better’ can be counterproductive!
You support a wide range of patients post-transplant. Is there a patient recovery story that stands out for you?
The one that stands out to me was a patient who was an older gentleman who was very proactive and wanted to help himself as much as possible. He had said the best piece of advice he’d had from someone was ‘don’t go home and sit in the chair all day.’
He used to give presentations to patient groups, and he had a picture of his chair in his living room. When it all felt too much, he would look at that chair and think ‘sitting there is not what will get me through this.’ He slowly increased his physical activity even though he was so tired, which was great, making him feel better and stronger. He built up to doing short bike rides and walking his daughter’s dog.
Lastly, what advice would you give to a patient who is struggling after their transplant?
The main thing is that you’re not on your own, there are services out there for you that you can be signposted to – such as local charities and support groups – as well as working with your Clinical Nurse Specialist and team who are a great source of information.
Going online for information is also good, but stick to recommended, trusted sites such as the Anthony Nolan website and its resources as it really shows you’re not alone in this and other people have gone through it too.