10 Years post-transplant: Anna's story

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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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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