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10 Years post-transplant: Anna's story

EPISODE 5: 10 YEARS POST-TRANSPLANT: ANNA'S STORY

Anna Esslemont had a stem cell transplant in 2006 when she was 23 years old to treat her Very Severe Aplastic Anaemia. Now 10 years post transplant, we talk to her about living with Chronic GvHD and how her love of music helped in her recovery. Anna also performs a beautiful song that she wrote for her unrelated donor found on the Anthony Nolan register.

Full transcript (auto-generated)

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Welcome to the 5th episode of the patient services podcast at Anthony Nolan my name is Billy and I'm the patient

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communication and in site coordinator throughout this series of podcasts. We hope to bring insight and support into the

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experience of having a bone marrow or stem cell transplant will be looking at what life before during and after transplant

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can be like talking to health professionals for advice and patients have been there themselves will be sharing their

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stories and personal experiences with you. We hope you find them helpful and informative.

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Today I'm going by Anna esslemont who had a stem cell transplant in 2006 when she was just 23 years old to treat her very

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severe aplastic anaemia.

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Anna is a former touring musician who still plays music in her spare time and now works as a marketing manager for the

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management centre who focus on charities and ethical organisations 10 years post-transplant will be chatting today about

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her experiences. What her recovery was like and what she's up to now.

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Hi Anna thank you so much for speaking with us today. Can you start by telling me a little bit about when you first became

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unwell and realised something was wrong. Ok, so it would all my chance. I moved house. I went to register at the GP and

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thankfully one of the GP's in the practice recognise. I was white as a sheet and I said I was knackered but I thought well

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I'm a touring musician. So that's logical has covered in bruises at all. I'm looking around at normal. I just thought I

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was naturally pale. She took some blood and yeah, they came they came to my house and got me that night and said they

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actually sat me down and said we think you have to keep.

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and

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is a bed for you and we need you to come into hospital right now, so it's a bit of a shock on a Friday night must have

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been a huge dog with I was with my partner at the time Cormack

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He freaks out.

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and so how long

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Into your treatment was it before it was discussed that you might have a transplant.

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I mentioned it kinda from the beginning as this is what the owner says and you know there's either the treatment route.

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The transplant and the Explained with the transplant the ideal situation would be if you had a sibling match. So you know

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they said they were going to test both my sister's but also the extent that he was pro treatment so for him if you'd

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rather.

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Try that first.

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Yeah, and then it was what I don't know a year and a half or so late. It was after two rounds of treatment and my sisters

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are in a match so we found that early on you.

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50/50 chance

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So, did you did you understand? What it meant to have a transplant we were able to take in all that information. No, I

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don't think I don't think you do and it actually it's a wonderful protective mechanism of the brain.

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because what your body needs to be doing at that point is focusing on existing and there were times when it's

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You know day today week month to month and just getting through and there are times when it's tired or when it's minutes a

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minute and the Brain you don't really need to do anything your brain. Will do that for you. It won't survive the one thing

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it can't do is is process really what's going on last it's trying very hard to help you survive so yeah, it's kind of

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afterwards that I really went for.

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Yeah, I'm silly, but it doesn't sound silly it sounds like something I've heard of the patient.

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Say about the experience of it kind of knock sensor.

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a bit further down the line yeah, yeah and so

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Did you have to wait a long time to find a donor and how is that experience like knowing that you're going to have to

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search for a stranger to help you.

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It's a strange feeling because by that point I already felt guilty enough for taking up every time you know and I think

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it's a hard thing for people who haven't had a long-term illness do understand it takes a lot from your family and stuff

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from people are amazing, but it's not like a cold that goes after two weeks not like something you have for a few months.

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It's a long time and so then.

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Motorpoint when I was really quite ill when

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It became apparent that chance that was the only option and to then have to go now. I'm going to ask a stranger after

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having hundreds of blood and platelet transfusions in the lead up to it now. I'm going to have to another stranger.

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Is also something a little bit magical about the idea that there is somebody that right not even be your gender.

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Is a match for you? I mean that's bonkers your sisters are brothers whenever my love you much.

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A complete stranger in any part, did you have to wait a long time or I was I was really lucky. It was relatively quick I

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think about this. I can't remember how long it was like I say I was pretty at that point.

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Ok, so while all this was going on when you knew you were going to have to have a transplant and you mentioned that you

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were really ill did anybody talk to you about your fertility as a young woman?

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Think think it was mentioned.

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briefly but because I

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Had a plastic anemia as opposed to cancer.

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I was having a very different conditioning regime so I didn't need as much chemo because my body is already.

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Killed off next to my bed and I didn't need any radiation where I had massive amounts of immune suppression, but they they

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did say.

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There's a chance you won't be able to have children.

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is it is kind of likely won't be able to have children but it was

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It wasn't discussed much. I was really difficult to hear.

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Yeah, it's weird. I thought you know being in your early 20s and suddenly having to consider like I didn't wasn't ready

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for kids at that point but certainly having to think about am I losing something that hides yeah. It was weird. I felt a

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little bit like I'm trying to live and strategies exist. I did kind of don't have the capacity to deal with that concept

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ready to be a mum like and will I be able to be nobody ever said anything about late harvesting eggs?

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Like that now.

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Oh yeah, yeah, can you tell me a bit about it? Yeah, I was having a really rough time and air conditioning not the chemo

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side of it, but they can pass that had no reaction to sew from day one of that for the week before they've been giving me

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massive pre-med and so go to charlesland day, and I woke up. I was very lucky. I wasn't that ill during transfer.

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Belligerent young girl and I think that kind of help but I was lucky. I was I wasn't.

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And so I'm very excited in the morning, but I also knew that they were going.

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Feel sleepy on Piriton and everything I didn't want that and then I got all nervous because I knew my donor was in London

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and I was in Leeds and I stupidly was like.

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What's in the news and it's like there's a car crash on the M1 as a comma god?

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Oh, yeah, reminders racing is all the possibility and family would just your call my partner and my mum with her with me

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and that you know they were like.

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Really excited and really nervous at same time and it's a funny feeling.

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Because you've been there sitting there for a week preparing for it and preparing for it for you longer before but

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actually on the day bit bonkers. Yeah, and how did you find the period after transplant was it long? How long did you have

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to remain in hospital?

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let's see no so

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I was there.

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beginning of December

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total

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15th I got as far as New Year

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and

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My cells are God was amazing micelles with chest started to grow and I had the tiny tiny little amount of blood on the

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counts and it was amazing and it was funny cos there was a point on Stephen I just a hit a wall.

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I need to go home if I was earlier would have been bad. I've had a couple of infections.

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Experienced by that point to know that I wasn't going to die in the next 24-hours.

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That was my gut feeling and I felt very strongly that I needed to go home and touch base.

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Just for a night which must have been.

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awful for

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My family for the doctors for nurses retrospectively. I look back and I feel very guilty about what I did, but I did say

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myself out for a night. I will be back first thing in the morning.

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Need to go home and just build up a bit of strength to get to next.

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Psychologically you needed an isolation every single time I was in hospital, which was a lot a lot a lot because of the

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plastic and never on a ward or anything like that and I got good.

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Tom herself and there's a little thing that I found really helpful and I still use it and that's when you're having to

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endure something and it is it's an insurance thing you don't have a choice about it forever every second that you're even

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thinking about.

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Being there that's a second less that you have to enjoy it.

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It's gone it's done in the time that I've been talking about it. That's the couple of minutes. That's gone and you're

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closer to that Endpoint and that helped yeah.

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You had a focus on your mind.

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and Buffy and knitting

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Buffy the Vampire Slayer and knitting and a Focus to find something that they can occupy their mind her that's not to say

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to help to focus on all.

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They can enjoy yeah, and I think you know.

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Trying to make your peace with obviously sometimes it's really hard times.

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Old my eyes out and when you go out and get drunk and be normal and go and see my friend and it's hard but actually the

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more you can realise that you've got the car. Did you get through this you can come yourself that is one of the things

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it's up to you.

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You alright with watching.

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20 hours of TV

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Some level of acceptance which was very easy for me to say on this side.

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Yeah, it's important. Yeah and because it's a having a transplant is a struggle at any time, but your young woman that she

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say you know.

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Must have really interrupted your social life and your relationship.

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That's how to take an isolation give you time to think about these things done that yeah your thoughts can go often not

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very helpful directions and then.

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You know if you've got plenty of time to sit there and we'll them back in and your body and your mind can learn to adapt

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pretty much any situation and that isolated experiences.

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Is hard but it is not impossible. I find now. I'm really good at going into my comms and space which is not actually as

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helpful as it sounds so getting tattoo to commemorate donor you know the number of being stabbed with a needle like I can

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put myself into this beautiful space and sadly so nice and make someone fall asleep. You have to teach me but it's not so

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good when I find my brain has learnt to go into that in fight or flight situation. I understand that's not so helpful so

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now I'm trying to learn how to do not switch off when I don't need to because I'm not in that situation anymore and my

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body is not fighting anymore so

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Why are you giving any psychological support when you're in hospital?

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I saw a wonderful psychologist just before going home because I had to decide.

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To have the transplant it wasn't you have to have the chance and this is what we're going to do. It was a choice which

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just felt so enormous and they sent a lovely lady called silver used to come round and come to my house. I was just saying

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it's so much easier because it.

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Post-transplant I tried seeing some people at the hospital and I just cancel the appointment already. I can't deal with

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this. I didn't want to go back to the hospital and when you didn't have.

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Exactly that but the the woman that came to my house was amazing and you know I'm a man sitting there and saying I haven't

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stopped smoking.

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And she went well, you know that's not good for you. Don't you?

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Yeah, it's not your biggest worry right now and just little things that she she just help me can ago. It's normal to be

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utterly terrified. It's normal to feel lonely and you do have the capacity to get through this.

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Can you tell me what it was like going home after your transplant?

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I remember just wanting to be home so much. I was physically.

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I mean as tiny my body is just tired and amazing to get home and to not be attached to the dog to be able to sit on a real

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toilet cos when I have my transplant we didn't have ensuites been able to use the loo and like sleep in your bed that was

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lucky. I found it.

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A bit difficult on some Council like with family you know obviously they were nervous about me coming home. Well my

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partner that was living with my mum and come stay with us for a bit and you know they clean the house.

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In such a way that I don't know anything was my clothes have been so free arranged and I found that difficult yeah, but I

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think that's a general transfer.

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You know but got the relief of getting home.

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the magic in your groin

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Somebody else's little yourself getting me and you know they've started to produce and this feeling of going all you need

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to do is stay calm and rest you sensible.

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You made it.

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Did you suffer from any gvhd and if so, can you tell me about the Arsenal manager?

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Yeah, so I didn't get acute gvhd. I got chronic gvhd which came is starting to present itself around about 5 or 6 months.

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Post-transplant and I got a little bit and my skin on my face, but where I mostly manifest it was my hands ironic as a

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fiddle player and so it was in the soft tissue the joints and their.

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my hands so if I like they were burning and

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Then they became stiff and they wanted to.

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Close too close to all the time if I couldn't open them to get my fingers flat, how do you describe that?

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I'm sharing it with my hands. Yeah, so they just they were like claws and really.

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Painful so yeah like holding things was really difficult.

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Opening thing is a shade of releasing grip is really difficult.

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It's really hard. Yeah. That was a long struggle then before the transplant and the transplant graft versus for

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6 years

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I kept I mean I had some amazing treatments lots of steroids, which is hard, but I had photo freezes and then I've had

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that for years and years and is and it would get me to a point.

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Just be like coming down on my steroids amazing and it takes so long and then they flare up again the steroids of work up

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and back to square one not happen the couple of times and then.

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My consultant the most amazing guy ever suggested. God. What's the drug my wonder drug?

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Come back to me. There's a drug that they don't really use for graphics and it's something that work for you. Yeah,

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eventually eventually managed to get off the steroids and I say getting off the stairs. It's not like that. You know I was

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on the because I couldn't use my hand flare up from time to time.

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I don't have any treatment. I'm really really lucky.

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So it can happen even when you got it chronic that can still clear up using years and years after.

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Of time where you couldn't play the fiddle.

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yeah, it was tough like so

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Difficulty was playing the film made it worse.

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a lot or sometimes, I do you know I'm playing it and need kind of seize up and

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If that happens if you know where you can do.

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What's half?

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talk to lot with my consultant about it and he understood that that was my life force and without playing I might have

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very well lost it so for me to push myself and go through the pain and

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It was always going to be a thing that that had to happen I had to be able to play side by side trying to get better and

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they don't swear I couldn't pay.

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sucked

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Messi time it's ok, so I paid for it after right.

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Play like I do gig or rehearsal and then I'd smash it wake up because I've been trying to do things for myself. Just get

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glass in the cupboard drop it right.

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Cleared up by effectively like something is in my feet I can get another glass and smash that was really difficult is

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greater than it did by now and it sounds like you had a really supportive consultant as well as all the difference who was

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your support network when you're recovering family friends.

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So I had cromac my partner at the time and I had my mum who is amazing.

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I always feel like it was hard for her that was for me.

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We went really linked up into any support what I understand Anthony Nolan offer which is just massive an awesome and we

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weren't really aware of any of that and because it wasn't a cancer that I had wasn't linked up to Macmillan yeah, you know

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and I was out of the Teenage Cancer bracket and and it wasn't cancer. So there wasn't a great deal of support. They make

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my sister's supported as a man occurred and my aunt was amazing. She was there for a lot of it.

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Friends here and there. Yeah, I think you know it's difficult because you you know if somebody that they can't come to

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you, so you know.

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Starting to explain to people in it as well because of the longevity especially that you experienced did did you find that

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people didn't quite understand why it was.

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Going away.

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Yeah, yeah, there was a guy who was there was a sound engineer and it ago dead.

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You know on steroids was battling the TV he was bad and I was trying to gig and concern engineer who had gained 4 million

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times over the years new me really well.

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We turned up at a gig and I have a big moon face from steroids eyes covered in hair from the cyclosporin and I was a

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really self-conscious and you know that I have to get a like when is open 93.

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You put on weight.

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People when I was on the flip side of that and super super super skinny people have no problem coming in and telling me

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that really no problem.

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It's not fair that people feel that they can comment on your Body Image especially as you say that yo-yo must have been

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very difficult for you to manage without Italian people we know friends. It's tough for them.

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They want to come and see you they want to be there for you.

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Sometimes people would call me up and say what I've felt a little tickle of a sore throat last night. I'm going I really

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respect and I'm grateful to you for calling me. We can we can take the best here sometimes.

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The opposite people you know friends family would show.

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Babe, it's nothing it's late really sorry, but I can't really hang out with you right now. He had to take care of your

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immune system will be mindful of infections and things like that.

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Can you tell me how long after transplant was it before you consider going back to work soon? I think it was about it. It

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was around about the time that gvhd so I think I'd get booked in about 6-months after transplant.

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Which gave me something to aim for?

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How is different as I was self-employed so?

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It was very much up to me and also I planned the gig so that I had close to home close to the hospital and it was with

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people that I knew the book has so about 6.

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How did you find that transition mean?

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Cooking with your chronic gvhd weird.

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Again, it's one of those things. I don't think you really understand until you're out of it and about.

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2 years

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Well, I think it was a long time for you brain start processing so as far as I was concerned. I was better looking than

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absolute numpty.

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Yeah, I take more risks than I should.

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In terms of what I chose to do and there were times when I had to cancel gigs and I would feel very defeated and that was

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pretty so did your music help you in your recovery?

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Passenger yeah, I literally don't think I don't know what I would have done.

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for me the most important thing you can do for yourself to get yourself through as find a way of

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Strengthening your head and your mental side of things and for me.

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I was of musician first and foremost and that was so important and it gave me a Focus and

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It made me feel like a human instead of the sick person and nobody knew I was sick and it was all anybody else to talk

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about but with music now that was.

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Nobody can take that away from me. So you recently had your 10-year post-transplant anniversary which is an amazing

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achievement. Can you tell me how you Mark the occasion? Did you celebrate?

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Yeah, I did it myself and it was really really as a work Christmas party.

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Quote of all the things I talked about today to realise this Is Gonna Be the Day at the moment.

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Christmas party

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and I

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Finally for I wanted to write a letter.

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to my doughnut cuz I always felt bad Lake

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I hadn't reached out sooner.

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Still being ill. I just didn't want to do it while I was ill. I didn't want her to be any of

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Anything coming from me or the way I wrote even though you wouldn't have been allowed to write it still by the way.

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I wanted to be.

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clear and I wanted to be clear so psychologically and to be kind of

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At peace with it and 10 years just felt like the right time to write and you know how do you how do you thank the person

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that?

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Just give me my life back like you know my family that care about me and how they gave.

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Hope them like for every gig that I did.

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because of the person that donated sells to me everything that I did when he stood up and he said you need to go out and

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Blood and platelets and get on the register.

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You wouldn't have this show today without that and that has a chain effect you know.

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Is all done this present how do you find the person it's overwhelming, isn't it?

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Play bubbling and then yeah, you can do what you like and what advice. Would you give someone about to have a transplant?

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Ok under overall site.

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each minute each moment

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retirees day

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the time

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You'll be surprised by how much you can handle.

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Do that also I've found going into transfer and it really helped to be.

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prepared in terms of having

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some of my things around me I know it's difficult with the garden having to be super clean and I did get told off for

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having too much stuff, but like I even

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Took some pictures from home and I got blown up so I could put them on the walls. Yeah.

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amazing pyjamas like super comfy and

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Little things like that is I guess it is got to be different for everyone.

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What is a young woman in her 20s had a I'm not a stuffed toy person but I had an elephant somebody bought for me.

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Ali and Ali Ali was with me the whole time even when all the visitors went home. I know it's stuffed toy elephant.

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But I had heard that.

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Hurt you would recommend you know people taking parcel in fact things that you know remind them of Home remind me whether

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trying to get to yeah and write stuff down actually that's quite helpful to because sometimes you know that is hard

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accepting that there is no way out of this like in the in the now now. You are going to have to go through.

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is going to be tough and there's nothing you can do to change that but sometimes it just helps to write down all that

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frustration and it kind of

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Out of your head and allows you a bit piece.

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Thank you Anna thank you so much for sharing all of your experiences. It's been a privilege to listen to you and really

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really insightful for other patients. So thank you. Thank you for talking to Anthony

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Before we finish today's episode Anna is going to sing for us a song that she wrote for her donor accompanied by her

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friend Ben on guitar. Can you tell me a bit about when you wrote what it means YouTube for me so I wrote this.

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It was towards the end of my treatment for gvhd is so still still in it but very much close to the end and it's called the

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kindness of a stranger.

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And actually it's the music came out of a very silly night with my Band of us playing each other's instruments and this

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little bassline came out and it just sounded so and without even thinking and just sang over it and it was.

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you said

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Don't be afraid, I'll lend you mine and we'll fly away.

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Something about this. It'll be alright. I'll give you a you got you know yourself and your mind I will both go off and

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this dream world and then the chorus just became about.

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awesome

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Somebody could be so kind to another human being and what a wonderful wonderful gift that is.

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34

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you said

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afraid

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angerme

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I've been

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Don't stay away.

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Bigger than the voice I have.

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sing

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Better than the timer half the height.

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Stronger now, I can't breathe.

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play My Life

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I don't know you.

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murder blood flow through my phone

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Hey, I'd like to thank you.

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do that pay

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Nothing greater than strangers kindness.

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nothing compared to how to get

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I wish you well on a Rover

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play Liar Liar

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I don't know you.

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Motability to my phone.

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hey

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Thank you.

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Google window to the page.

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for me

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Thank you for speaking with Anthony Nolan again today and thank you for playing that beautiful song I'm sure your donor

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and all the donors on the register. What absolutely loved it. Thank you for doing it.

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Thank you very much for having me and 2.

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Patience going in getting through it coming out of it. You're awesome. You can do this to all the donors. Oh my god, you

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are a prime example.

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awesome

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human beings can be

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If you'd like to find out more about the ways Anthony Nolan can support you and your family, please contact the patient

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00:07:35.309 --> 00:07:41.160
services team at patient info at anthonynolan.org or call. Oh three. Oh three three oh three.

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A303 for thanks for listening