Mandy Ellis is a BMT Nurse Coordinator at Oxford University Hospitals NHS Trust. Mandy has more than 20 years’ experience in Haematology & BMT, guiding patients through all stages of their transplant journey.
Here she explains the importance of planning ahead, listening to your body and being kind to yourself to help you manage your fatigue after a stem cell or bone marrow transplant.
How does the type of fatigue experienced by people who have had a transplant differ from the type of tiredness you or I might have after a bad night’s sleep or a long day at work?
The difference is that people who have had a transplant will often say that they feel as if all their energy has gone, and it doesn’t come back after a rest. If we are tired and rest or sleep, we’ll often feel refreshed, but for people who’ve had a transplant, the fatigue is still there. It’s an extreme type of tiredness.
How common is fatigue after a transplant?
I’d say it affects everyone to some extent. Feeling tired all the time and finding simple activities difficult is one of the most common problems after transplant.
It can be a very frustrating time and I try to reassure patients that this is normal. Prior to the transplant, we tell patients about fatigue so that they can prepare for it and expect it.
Are there any known causes or triggers for it?
There are many different causes and it can be a combination of these that lead to fatigue after transplant. These may include the conditioning therapy (chemotherapy and radiotherapy), not eating and drinking as well as you would like, not sleeping well, general muscle weakness after spending many weeks in hospital and sometimes worry and anxiety.
How long does it usually last?
Unfortunately, no one can tell you how long it will last for you as an individual. In general, the older you are the longer it may take you to recover, but younger people can also feel fatigued for many months as well. In my experience, patients tend to get back to some sort of normal routine about three to six months after transplant but it can take longer.
My fatigue has been going on for years, can it ever just burn out?
Fatigue that lasts for years can be extremely frustrating. My advice is to talk to your team if your fatigue is going on for a long time. They can help explore what’s happening and what may be the cause of it and they can help you to find ways to manage it.
What can I do to improve my energy levels?
Sometimes it’s just a matter of time but there are some simple steps that you can take to help yourself. Monitor your fatigue and what you’re able to do each day, and with time slowly increase what you do. Choose a small activity and do it every day for a week, walking to the end of the drive for example, and then gradually build on that and walk a bit further.
People often feel better when they see that they are improving. Setting yourself achievable goals and building up what you’re able to do can make you feel more positive and motivated, while building your physical strength and stamina.
It can be frustrating if you can’t do all the things you would usually do, even small jobs around the house. In the early days and weeks following discharge, I encourage patients to do small activities and then have a rest. Try not to expect too much of yourself and don’t feel guilty if you are not able to do the things you feel you should do or want to do.
It’s important to have structure in your day. If you’re fatigued it’s easy to stay in bed, but this wont help you get better in the long run. It’s ok to have a lie in, but make sure you get up and set yourself something achievable to do.
If you know you’re going to do something that will take a lot of your energy, be prepared for perhaps feeling more tired the next day. It’s helpful to plan ahead and balance activity with rest.
Photograph copyright Pavlos Mastiki
Can diet help?
Eating a healthy balanced diet is important for your recovery. This often isn’t easy after a transplant as you might not be able to eat normally for a while. Read Senior Haematology Dietitian Nicola Scott’s interview on managing your diet after a transplant for ideas on how to eat well if you have a poor appetite or taste changes. [https://blog.anthonynolan.org/2015/03/managing-your-diet-after-bone-marrow-or-stem-cell-transplant-everything-you-need-to-know/].
Are there any complementary therapies I can try?
In my experience, music therapy is popular with patients. For example, if you’re out for a walk, listening to your favourite music can help you get a bit further and have an uplifting effect.
I suggest reading the Macmillan Cancer Support booklet, Cancer and complementary Therapies, or listen to the audio version, for more ideas and information on therapies you could try.
Is there anything else that can help?
Friends and family often want to help, so accept the support available to you. Ask friends to help with practical things like shopping and cleaning, especially early on. You could ask them to cook meals for you and freeze them for the times that you don’t feel like cooking.
It’s good to plan ahead for the more practical things like this, especially for the first few months. It takes the pressure off while you’re recovering.
Photograph copyright Pavlos Mastiki
What do you say to your patients who are having a hard time with fatigue?
Everybody is different and there’s no right or wrong for how much energy you should or shouldn’t have. Listen to your body. Do the things you want to do if you feel able to. If you feel like your body needs to rest then sit and rest or have a nap.
Be kind to yourself. Try not to think of the things you can’t do because of your fatigue and focus on the small things that you can do that perhaps you couldn’t do the previous week.
Talk to your transplant team if your fatigue is worrying you and/ or making you feel low. It’s a very common problem and they will be able to support you and help you to find ways to manage it.
Find out more
For more on how to manage fatigue, we are about to release our new booklet Managing fatigue after a bone marrow or stem cell transplant. To pre-order your copy email us at patientinfo@anthonynolan.org
You might also find our interview with counsellor Philip Alexander, Managing anxiety and emotions after a bone marrow or stem cell transplant, helpful.
MacMillan Cancer Support’s booklet, Eating problems and cancer, and Leukaemia and Lymphoma Research’s booklet, Dietary advice for haematology patients with neutropenia, have ideas for eating well if you don’t have much of an appetite or aren’t feeling well after a transplant.
The Mental Health Foundation has relaxation podcasts you can download for free.
If you’d like to receive more content like this in the future please sign up to Before, During, After, Anthony Nolan’s quarterly enewsletter for patients and their families.
The photographs in this blog were taken by Pavlos Mastiki. Read about how he uses photography to recover after a stem cell transplant in his blog.
DISCLAIMER: At Anthony Nolan we take great care to provide up-to-date and accurate facts about stem cell transplant. We hope the information here will help you to look after yourself. Each transplant centre will do things differently, so this blog is just a general guide and isn’t intended to replace advice from your doctor and transplant team. Please speak to your transplant team for more details about your own situation as they will be able to give you personalised, specific advice.