Managing fatigue & getting back into exercise after transplant

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Welcome to episode 7 of the patient services team podcast and Caroline and I'm the patient and family engagement

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coordinator here at Anthony Nolan through the series of podcast we hope to bring you insight into the experience of having

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a stem cell transplant will be looking at what life before during and after transplant can be like talking to help

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professionals for tips and advice and patients who have been there themselves will be sharing their stories with you.

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We hope you find it helpful and informative.

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Who is the assistant director of patient services that Anthony Nolan patient services team 6 years ago recognising that

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patients and families must be at the heart of everything we do she previously worked for many years as the physiotherapist

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on the transplant team at st. Bartholomew's hospital in London

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hello Kiara text me today my pleasure

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can you

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Telling me this bit about your career and how you came to be the assistant director of student services at Anthony Nolan

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yeah, I'd love to sew.

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I really wanted to be a physiotherapist, but I didn't do quite as well as I thought I would in my A-levels so I kind of

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went the long way round to where I am now so I was a physiotherapy assistants and the London I'm from Yorkshire so I need

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to London after my levels and worked as a physiotherapy assistant.

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At st. George's hospital in Tooting and love that and what I was doing that I then applied and got into a different

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therapy degree and I tried it Brunel and did my three years there and love.

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Every minute of my time at university love being a physio, I was really excited about getting a job and then when you when

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you graduate to do your rotations, so you go and all the different parts of healthcare system.

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Work out what it is that you love what your passions are what you're good at what?

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Get out of bed every morning and I remember rotating into cancer my cancer rotation and it was going to be at st. Bart's

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and had a bit of a bad reputation. No one really wanted to do that rotation, so I have pudding decorations and within

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days. I knew I would also specialise in cancer and it absolutely had me hooked. I loved the staff the hospital and the

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patients with just amazing amazing amazing people and the family so I'm very quickly fell in love with cancer and

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palliative care and just how humbling it was to get up and do that for.

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And then I was diagnosed with a strange lung condition which meant I had to stop working in hospitals, which is a real

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shame, but luckily a really fantastic opportunity came up with.

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And that was to run their information and support center at King's College Hospital so I did that for 3 years and got to

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know these amazing patients outside of the hospital setting and that was really important and their families and it really

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gave me a better insight as to life after their treatment what it was like when they go home the challenges that they have

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going back to work. How their families cope after they've had such an ordeal and then this great job came up at Anthony

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Nolan which was

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The kind of perfect combination of Clinical passion and working with transplant patients during their transplant and then

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the expertise are gained through Macmillan about what that information needs were in real life challenges and that was.

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That's why I come to where I am today brilliant sounds like a really fantastic really long way round.

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You mentioned the challenges that patients face after having a transplant obviously has he worked with.

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What did you find at that time the main concerns where after transplant sort of about their physical recovery? Yeah? It's

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I think the hardest thing.

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For them was.

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I don't think you can ever.

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Properly prepare somebody to have a transplant. I don't think you can really describe to them quite hard debilitating it

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can be and not to say that that's at the end. That's all. I really bad thing but there's something around giving them the

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correct information so that they are prepared for what happens after and it's not all doom and gloom people recover

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recover exceptionally well, but I think they are often too much of themselves and want to have their transplant and be

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better and they've also got the pressure of their friends and their family seeing their transplant as the thing that's

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going to make them better. So they have this frustration at not being able to just down straight out of bed and get home

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really quickly and they're always told that they're going to be in hospital well at the time. It was 3 weeks 5 weeks 6

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weeks. It's got much shorter than a little bit longer.

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Someone they met those milestones if they weren't up and ready to go home. They had this huge.

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On themselves, which was misplaced really so I think the biggest challenge was managing the expectations of how they're

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going to be able to cope and it was also a little bit about who they were as a person are they retired do they have a

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really physically active job? Do they play international rugby? You know it's physically who they were before they

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transplant.

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They have to cross over to get back to who they were that with that was the biggest challenge. I think so we often hear it

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working in the patient services team that fatigue is one of the most common side effects of transplant and

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Can you explain a bit more about fatigue and the difference between?

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And just feeling tired.

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a massive challenge and

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Again, I think people don't get the information that they quite need.

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So they're expecting at the other side of the transplant so the difference between fatigue and tiredness as if you have a

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really late night.

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When you're tired the next day, you can have a couple of naps. Maybe an early night and get a really good night's sleep

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and you feel refreshed the next day.

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Doesn't allow you to do that.

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More sleep or better sleep will not make you feel less to take the next day. I remember patience saying to me that she had

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she was responsible for a couple of kids as she wasn't sure that if the house set on fire that should be everybody else

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because the thought of having to jump up and get out of bed and get her family out safely was almost overwhelming over and

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look there is a scale of the Teague it might just be that.

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You struggle to get up in the morning. You can't face the thought of actually having to get in and out of a shower because

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you know that would just wipe you out down to you struggle to get holidays working.

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I struggle to go back in play competitive sport quite as much as you used to so there is a sliding scale, but it is

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completely different to being tired and

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I also think that's one of the really big challenges for those around the patient because if you're trying to explain

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fatigue it comes across as just been very tired. So someone's knee jerk response will be call. You should get an early

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night for you should try and get some more sleep and actually what we know is.

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Having too much sleep and have a bad impact on 4th Jenny way, so that's the main difference.

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Tiredness you can recover with a good night sleep 40 sometimes you can't even get your head off the pillow.

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And would you say the that fatigue is the result of many factors or absolutely no treatment age a number of things? It's

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exactly is although. It's multifaceted. It's because of that the actual disease aetiology. It's the the treatment that

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you've had radiotherapy is very closely linked to fatigue. Just the onslaught of the treatment you had as well as a real

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combination of factors and I think what we don't talk about enough is psychological impact of having a transplant can also

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really impact on your mood which we know then also in on your fatigue levels, so it absolutely is and suit to manage your

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fatigue you have to have a little look at all of those areas of your life how you sleep. You know what physical activity

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do so as it has a big impact.

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What advice would you give to patients and you can attach them? It's already but who are really struggling with fatigue

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and

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You know I didn't expect to feel this way at all after transplant.

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I think the best thing that you can do for a week or so is make a diary of your peaks and troughs of activity when you

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work best that there are a couple of things that I would.

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Definitely suggest.

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The the temptation to nap can be overwhelming when you've got fatigue and that's fine and sometimes. It's irresistible and

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you have to just take a power nap, but I would I would say to try and push your naps as is possible in the morning. Maybe

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just before lunch or immediately after lunch but perhaps limit them to come about half an hour and no longer than half an

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hour.

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And not much later than 3 16:00 only because we know that an app might make you feel little bit more refreshed, but it

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will almost certainly impact on the quality of the sleep that you have that night.

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And then asleep itself, it's real.

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to get into a routine of preparing yourself if you look online at something for too little sleep hygiene and which is a

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bit of a strange phrase really but what it means that you're preparing your mind and your body for the sleep at night, so

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these sort of magical hours between 10:00 at night and 2 in the morning that we know is the most important restorative

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sleep that restores your body and your mind and they're willing to sleep that you want a crack in terms of getting you for

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taking control so

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As you running into the evening and heading towards bed start to do really simple things turning down your lights stop

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watching TV about half an hour an hour before you go to bed. No phones. No phones absolutely no alcohol the caffeine that

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you're taking in and caffeine again is an interesting one because I think you know if you're not tolerant of caffeine

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because you're lying awake at midnight drumming your fingers cos he had a coffee that was a bit late some people think

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they are very tolerant of

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And it doesn't it doesn't stop them from nodding off, but it going what we know from the evidence is there.

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You can go to sleep but the quality the sleep that you're guessing yeah. It's not as good and doesn't give you that

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restorative quality so

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Manage the time that you have in your naps and prepare yourself for the for the sleepyhead keep your room nice and cool

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really dark, and just have that really lovely drifting to sleep so I got your mind on your body.

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Is there anything people can do if they struggle to get to sleep initially? I know mentioned that in the rumour and young

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not having phones but if they're sort of apps are anything that.

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No, that's fine. I know that there's some really good mindfulness. Apps that you can do or relaxation apps. I love

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listening to music and there are certain artists of things to listen to that. I find particularly relaxing. I know the

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other people really enjoy reading and that gets them into a mindset.

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I think if you're managing fatigue.

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Once acknowledged that actually this is a long-term condition. Don't rush your recovery when it comes to fatigue and try

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and try a few different things and see what works for you. It might be that reading your favourite book a few pages and

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you send me.

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Oh my days I feel.

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Sleepy this is working. I'm just go with it or that.

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Put your radio on and you set it to go off after half an hour and hopefully if you have fallen asleep try a few things and

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see what works great again. You can't touch for a little bit earlier from patients that it can be hard to explain 42 the

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family and the family members and friends often is the impression that they will have the transplant and then be better

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and I can do is normal but as we know they still recovering for quite a long time. How would you advise people to explain

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it to others around them and how can other people maybe help?

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Yeah, that's a really good question and I think that's one of them the tricky things for people to explain.

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Anthony Nolan I've got a guide to managing fatigue and it's got some really great advice about how to manage certainly

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things like your social life and those around you when it comes to describing your 4th God and recommend that but there

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are certain things about explaining to them about.

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What makes it even harder to manage SO40 gloves it when there's boom and bust approach to your life and managing your

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energy levels so by that I mean when you wake up anything. I'm actually having a good day. You go all out and you do your

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supermarket shopping and then you go for a walk and you meet your friends for coffee and then you wake up the next day and

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it's one of those days, where you feel terrible and then you do 0 the next day and that constant up and down have your

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activity levels is exactly what fatigue wants what it doesn't want is for you to maintain a happy medium.

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So that's a really important thing that you can explain and describe to your family if there is you know your 4-year old

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nieces party at 10 on a Saturday morning and then it's your great aunt Nancy's on the Saturday night and then as a family

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Sunday lunch.

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You can explain to them actually you can only go to one of those things and honest underground because it will really

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impact on the person that you are and who shows up at those events if you got try and do all of those so it's about

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managing your time and managing your energy and that's I think the message that you can give your family and friends, but

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it is really difficult but it is a very personal journey and in all the patients. I've ever met and they all have a very

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different experience of the level of the tea that they have what works for them and how it impacts on on their work or who

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they are in their family or who they are socially and again. It's just a little bit about working out who you are in

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those.

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Manage your energy levels and explain that to your family and friends and hopefully that will.

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It's important to have a strong support system around about you is better especially in terms of managing fatigue, but do

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would you advise patients to sort of make sure the family know the takeover daily tasks for them such as you know doing

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the shopping or taking out the bins. I guess to avoid infection risk baby and I think that's why some of the guys that

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we've got a useful because I just as your family members to read.

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Yeah, I have a great family and you have great people around you and that's lovely but actually true that a lot of people

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that have no next of kin and they don't have people to rely on but where we do absolutely make the most of it make them.

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It's up to them to know a bit more about what a transplant is so that you don't have to ask for help. I think that's a

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really important thing is a friends and family listen to this then the most important lesson is to not wait to be asked

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but just a step in if you know the bins need to be put out then ask her permission just do it if you notice that the

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fridge is a little bit empty then go and pick up some supplies because they are busy you'll love them. That's at the

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centre of a trans man is busy recovering.

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So what they don't need this event may be perhaps feel guilty for asking for help because it doesn't always come naturally

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the people so if you're a friend or a family member then just dive right in and an offer whatever support you can.

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Energy levels and sleep as well the importance of these things and on to exercise now.

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It can often be the last thing on the patients mind after a transplant, how would you recommend?

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recommend patients approach this as part of their recovery the huge Factor in aiding recovery but

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patience

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Think about it.

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Yeah, and that's you can imagine me boring into a patient's room and telling you that I'm physiotherapists and let you

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know the feeling at the absolute worst Loughborough transplant. It's a bit of an oxymoron. You know the feeling terrible.

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They were wiped out they got for Tegan and I'm telling him to get up and do some exercise the most important thing is to

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not think of it as being anything complicated physical activity is as simple as somebody getting.

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Getting dressed going downstairs and having your breakfast. You know that sometimes is enough of course again. I keep

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talking about the scales of Recovery it's so personal but it can be so the way.

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recommend

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Initially went home was if they lived in an area where they could walk you never had 200 m one way I can walk in a bit of

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a square that would always get them back home.

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And then just increase the number of times that you do that. It's really important. You go don't go too far away from home

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because you never know if you're going to feel a little bit dizzy or you need a drink. We need to have a bit of a rest you

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want to be close to you. So so doing that sort of thing.

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It gives you a bit of psychological boost. Could you think well I walk around that Square twice?

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TripAdvisor going I've managed to do it three or 4 times. I think doing a little bit Wilder in the ward is really

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important as well because it?

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Really good for your mood and again as so much evidence that supports that wear.

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Even the slightest endorphin that you get from getting up and doing something that you feel good about yourself as a

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massive impact on the mood and that has a big impact on your fatigue and your energy levels how you sleep doing a bit of

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exercise helps you get back into a really healthy circadian rhythm helps you with that really good restorative sleep so

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again. It's about who you were before your transplant if you didn't do any exercise before.

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unexpectedly running a marathon France innolearn you know in a year's time, but if you were pretty healthy and you've got

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some good regimes that you enjoy doing then just gently start to reintroduce elements of that into your daily saying if

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that's just going round the block think great if you want to you know work at a higher intensity, then you can I need to

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do some hard work, but don't do that without getting advice or

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Support from the GP or if you're going out for the first time somebody knows it going out for a nice walk and of course.

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There are a couple of times that we wouldn't advise people to be physically active so make sure your bloods a nice play

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ball and that you're not anemic that you're not busy, but you don't feel sick.

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Diarrhoea unexplained sickness or vomiting because I also has an impact on your hydration to make sure you're eating and

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drinking in our so as long as those things are ok and then check.

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think sometimes you want to protect yourself because you've been through such a rough ride your family might not want you

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to go out and go and do physical activity and exercise and go for a walk, but

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We will never understand how you feel better than you know your body, so if you feel like you're ready to go out and take

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a walk fantastic. Don't go too far away from home Start small and just build up how long before and then how quickly you

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walk for I can go and I can talk about exercise but start with walking build it up. How long you do it for an and what

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intensity workout but they are the key ready to getting back on.

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It doesn't have to be so joining a gym or doing anything nice class. It's just simple steps at the payslip feels good

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definitely no lycra. No sweat bands. No snow marathons, Netflix

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so this kind of links to my next question which is about Anthony

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patient

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could my transplant

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And I understand that you can actually track your exercise goals and set goals as part of your recovery.

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That is correct the app is fantastic and it we had it for a year now. We've had over 1000 downloads of the app. I'm really

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and people put on their phones. It was a really good team effort from social services to stop running and yeah, you can

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set yourself daily goals which really helps some people give them Focus and it can be something like we just describe the

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really short walk or do you want to do like Couch to 5K and really get yourself some physical goals it could be well-being

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goals lifestyle goals social goals and but you can do all of that and tracker and get the rewards through the

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But it also then is in a safe place where you've got all the information or the Anthony Nolan patient services information

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in one place as well, so if you're worried that you're over doing it or you've forgotten some of the side effects might be

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experiencing. It's all there in the app and you can refer back to it.

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This is all information that people like you have asked us to do and more importantly. It's people like you that have

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helped as write it so

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Go on the app set yourself some daily goals and get the rewards and you can just track your recovery through that and it's

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just a lovely way to do that if you if you're.

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Inclined and you like using digital Technology to track your recovery.

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On the subject exercise the British transplant games are taking place in in Newport Wales what happens at these games.

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I've never been 24 you can take.

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The 4 days of the British transplant games are truly for of the best days of my working year and I really look forward to

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them and you can take anybody that's had a transplant any type of transplant. It does have to be in I don't related

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transplant, but if you had a sibling or a heart transplant or umbilical cord transplant and you can join team Anthony

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Nolan and you are surrounded by.

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About 1000 other athletes the majority of human have had solid organ transplant so hearts and lungs and we can have come

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down the pecking order a little bit but we really pack a punch to the two months in Ireland and we are very competitive

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and very loud but I think we also have the most fun.

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There are activities that range from a 5 km walk the social activities you can do darts and there is a competitive element

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because if however while you perform at the British transplant games you do a chance to go on and compete at the world

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transplant games and it's really good and we have had some people from team Anthony Nolan who go forward to represent team

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GB which is the most unexpected and amazing outcome in the British transplant games so I would really really strongly

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encourage people to sign up. It's not scary or intimidating and you get a really cool, London hoodie you get the loudest

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cheer squad alone at the games for being very loud and enthusiastic, but it's a brilliant brilliant thing to do and I love

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being able to take a team of staff along because it's just that annual injection of reminding us. Why we do what we do.

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These people have been through so much and actually see them having fun then you know picking up Meadows left right inside

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and outside transplant within the last year years ago so for them to watch each other and to share their experiences in

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that sort of environment is it's fantastic.

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How to pick a favourite moment from the games I know you've been to a few what would it be?

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What's a very very difficult question he has to take one I have to pick one.

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I think the very first team meal that we had in Newcastle for the first time you took 18 years to the Newcastle British

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transplant games and the female is always on a Saturday night, so it keeps opening ceremony on Thursday and the games are

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on until the track and field events at the end of the day on Sunday on the Saturday night. We that there's a run everybody

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does and then we all sit down as a team staff patients and families and I remember just sitting back and it's exhausting

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as a member of staff those 4 days just wish by but they're absolutely exhausting sitting back and it's the first time and

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allowed myself to have a little drink and I just looked down the table at these amazing people that I get to work with and

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these incredible patients and their wonderful families and just thought

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This is fantastic. This is why we do the job and I'm very very lucky to have an organisational like Anthony Nolan that

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allows us to do something like that and

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The recognises that that is just as much an important part of the recovery as whether they have a CNS or whether they have

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their vaccinations to those patients that is them getting back to normal life and to be able to have the freedom to do

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that and to facilitate that is incredibly special.

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Sounds like a really fantastic for everyone to set up absolutely.

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that moment being one of your favourite, but what part of your job is there a hold of

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What gets you up in the morning?

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I don't have to say this but I have an incredible team have a very good team who motivate me and make me want to do

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better.

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What we do incredibly? Well, is that we are constantly in conversation with our patients and with a healthcare

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professionals that we rely on so heavily.

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So what gets me up is listening to patients finding out what their needs are what's really important to them and then?

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Working with you guys with my amazing team.

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a solution

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What are there on that needs and what can we do to work with the NHS to make that need something like that? You know the

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people having a transplant today won't have to struggle with that's what gets me up to be better and listen to our

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patients and healthcare professionals.

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I'm glad it's not coffee.

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It's not brilliant. Thank you so much for speaking to me.

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My brother thank you very much.

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For more information on stem cell transplant and recovery as well as free resources that you can download an order you can

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visit our website www.nsandi.com we also have an online forum you can join but I was patients and family members to speak

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to each other and get advice from transplant recipients Who been through the process to sign up to the forum, please

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visit.

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We also have a peer support telephone service we can speak to someone who had a transplant at least 2 years ago.

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And other ways we can support you and your family, please contact the patient services team at patient info

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anthonynolan.org.

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I call 0303 303 0303 for a chat if you found this podcast useful, please share it on Facebook and Twitter and let us know

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what future topic seems like to hear.

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Thanks for today.