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Episode 7: Managing fatigue & getting back into exercise after transplant

EPISODE 7: MANAGING FATIGUE & GETTING BACK INTO EXERCISE AFTER TRANSPLANT

Fatigue affects most people after stem cell transplant. We meet physiotherapist and Anthony Nolan's Assistant Director of Patient Services Chiara DeBiase, who explains the difference between fatigue and tiredness, and tells us how to manage fatigue and return to exercise.

Full transcript (auto-generated)

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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.