Body confidence after stem cell transplant

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Welcome to episode 9 patient services team podcast I'm Claire and I'm the patient and family engagement coordinator

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Anthony Nolan different insight into the experience will look at what life was like before during and after transplant as

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well talking with healthcare professionals for advice and guidance will also hear from patients and their families who

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will share their personal stories and experiences with you. We hope you find this helpful interesting and informative.

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Georgie swallow Georgie is 27 and was diagnosed with hodgkin's lymphoma in 2018.

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She recently had a stem cell transplant blog. She shares her experiences of blood cancer and stem cell transplant describe

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yourself as a pug mother figure and Relapse Renegade on Instagram where she shares the realities of living through cancer

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with more than 12000 followers he has worked with the charity Stand Up to Cancer on body a topic that is awesome letter of

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discussions around cancer will discuss The Good The Bad and The Ugly as Georgie pizza including her experience of stencils

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for others.

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Thank you so much for being on Anthony and podcast. It's so great to meet you. Thank you. I'm really happy to be here yet

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delighted to have you on your story to tell your story.

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I think it was.

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Majoritively the ship back. I had no idea what I was doing when I was diagnosed and

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I started going on social media and looking at other girls who in a similar position or other girls who were a few months

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down the line and I still have they were showing their stories and I thought that's a really good way to document what

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you're going through. I use as my own personal diary and also I found it so helpful I could see.

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Follow one girl who is a few months, when did they cut their hair? Did they cut it in stages or do they just shave it all

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off?

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Because I have no idea.

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what to do where you're going up and the last thing you know anything I just shaved my hair off now or how am I going to

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feel you know all these other things so I thought

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I'm going to follow these girls try and get some hints and tips but then if I can start showing my story to then other

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girls may find it helpful as

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Others have help me yeah that makes sense.

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And I got idea and see what I can learn from others and then put that in my own blog my own personal experience and one as

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your own. I think for me is I found my Instagram using it.

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like my Daily Journal is really helped me so I could remember what happened at each stage but also for venting and getting

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everything off my chest or any queries and the world of social media everyone can help answer questions so

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You know I think that's probably the main reason and it's so important if you like within that there's a crazy signs and

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symptoms as well as the reality is like the day. I feel awful and that brutally honest and that's important.

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You're that I think I mean everyone so guilty of using social media as you know these are my highlights. It's like a

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highlight really isn't it? So I'm guilty of it. I've gone out.

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yoga for 10 minutes

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For the rest of the week, I'm sat in bed or I felt really awful and I just didn't want to share.

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Too much of the positives of I wanted to be real and to see the reality and what's normal going through cancer yeah, and

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that makes it better than for those people who are going through something similar. It's not like.

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sunshine and Rainbows and Steph film using a taxi highlighter

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Some days, I'm going to feel bad just what comes with it and I would look at other people going through their own cancer

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journey, and I would look at it on my gosh. They're doing so much so doing so much more than you know they're going out

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exercising every day while I'm sitting here feeling sorry for myself and it got to the point where I just thought you need

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to stop looking at this and you just need to follow your own rhythm and make sure you show.

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It's not all positive. There are some really tough times, but it's just showing a balance. I think absolutely and as

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personal as well and help sometimes and compared to others or whatever they're doing like we all compare. Don't need so

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it's important to bring it back to this story. I'm on my own like a personal journey and so you've had more chemotherapy

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and then you had your stem cell transplant in October there now in 2019 following a Relapse so how was that experience for

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you?

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Relaxing came totally out of the blue. I had a lot of friends who.

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I finish at 6-months of

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I'm chemotherapy for hodgkin's lymphoma and they said you're constantly going to be worried about the council coming back

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every calf ache pain you're going to think it's cancer and I didn't I just thought when I've done my treat. It's luckily a

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highly treatable disease so I went.

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Ask me finish. That's it. So when I went in for my 3-month scan and to get my results. I was thinking right will sailing

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say hi to perform them off we go again and been told you Relapse in the council's back. It just

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Knocked me for six course first time round I was so positive everything was fine you going.

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It sounds odd saying it's all fun, but it's all new experiences. I think you can try and find the fun in it and try and

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see the excitement in you know different things.

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Having already done it you go.

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I know what's round the corner. So did take me a while to pull my socks up and go.

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You got this you've just got to get into the room again. So those three months of chemo.

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Would tough but manageable the side effects are actually a lot easier than the first time round so it's just getting my

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head back in the game.

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And then it was the stem cell transplant. I don't think you can fully prepare.

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Yourself for what it's going to be like I spoke to 10 million people had already gone through it all the doctor's I done

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so much research as offer list for to take and I thought right I'm going to go in now this.

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Play music Evans cancer journey, isn't it is also different so where I went also at this day. I'm going to feel like this

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and this day. I lose my hair.

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I was completely backwards to everything. I thought was going to happen.

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Is this you getting?

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I think well with a lot of cancer treatment is you get your head down you take it day by day yeah and just

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Do the best you can so I went into the hospital when you get a week of high-dose chemotherapy and that was fine because I

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still allowed at the hospital. I could have it or pop around and there's only four and I got my stem cells back.

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Avon hospital, lockdown because your neutrophils are really low and that's only started feeling quite unwell and those few

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weeks.

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I won't lie they were very.

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I got quite unwell.

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Towards the middle of it and I got pneumonia and feeling very sorry for myself and you know it was it was a very

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interesting experience and are being done that you did it again and then like a completely different ball game like a

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completely different ball game. So you'll get used to going to chemo either every two weeks or weekly but feels only for

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either day or hours and then you're not home again. Yeah, but when it's the stem cell transplant and they say look it's

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going to be.

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Probably about 4 weeks.

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a hospital room

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You won't be allowed out your in isolation. I'm in at first. I'm thinking people can be coming in the room and I hazmat

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suits on window to wave at people and that's all the contacts. I'm going to have turned out in your room lights.

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I think going into it you try and prepare yourself as much as you can.

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Each day with different even if I was getting the chemo.

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Which was the same everyday?

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How to have different feelings each day or even you know sometimes I'll be happy or the chemo effects of be a bit

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different so you just couldn't tell what it was going to be like and I went in thinking. I'm going to block all of this.

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Play all of it.

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so I can put it together you know be great for someone else and it got to about maybe a week and a half in when I started

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feeling really unwell and I thought

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I can't do that and I just

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Have you it's better me and at the end of the day?

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Me blogging something isn't that so you have to put yourself first and don't think I need to call someone I need text

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someone I need to make sure that I'm doing this email going to say.

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This is the time in hospital whatever happens happens.

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If I just need to sit do nothing.

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Set a ceiling.

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That's what you going to do when you're giving treatment. It's sort of what you're saying earlier. Ok? I'll do this bit

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and then I wondered that sometimes as you say, it's just taking it moment by moment day by day isolation require a new

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environment. Was you going in another hospital doing your chemo then going home. Where is not confined to a room that

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yeah, I hadn't had more than a couple of days in jail before that yeah, so saying.

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Weeks, are you going to be in there? You're not going to be allowed out after the first few days of isolation. I thought

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Wow, this is actually going to be really tough but unfortunately when the effects of the transplant take place.

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You start to feel quite unwell. You can't really do much so most of the time.

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Laying in bed sleeping, is it all you're going to do anyway? And I didn't want visitors. I didn't want to talk to anyone

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who is just I just want to get through this. Yeah. I think that's definitely strength and today. I don't want to visit. I

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don't want to do anything but that's just not right now. I'm in my family were amazing and my pets a cuppa come up all the

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time.

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Maybe sometimes my mum will come up to come in the room ok?

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I don't want to see anyone today know and she's going to sit in the waiting room all day. Just to be there.

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I just couldn't have anyone in my room. Yeah, it was my little spot. I needed my space and she was I mean and I live in an

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hour away from the hospital so she's come up sit in the waiting room then can say goodbye anything in your hair, but just

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want to be by myself and that's because I've always been always be around people connecting with people and chatting and I

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never be by myself.

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I think the start of the stem cell transplant was very much. No.

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I actually think I need to get my head down.

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Really try and comprehend what's about to happen and if I need my own space.

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And that's what you need to help and understand so whatever you need.

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Just let them know.

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Night Live than they can know what you're up to me that needs support you with it amazing. Thank you. So one thing I found

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so fascinating Georgie is how you can find the sun in someone for example of what a unicorn onesie to chemotherapy you

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give nicknames for your lump, was it back yet until I sleep in your head as well for your hair loss.

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Evident that you have such a creative approach to expressing this work experience so how do you and did you find this

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underneath difficult situations I think.

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where is funny when I first got diagnosed I

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Thrown in really quickly, I literally got the news I have Stage 4 cancer on the Thursday I was in the hospital the next

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day for chemotherapy order to happen so quickly that I don't think I had time to really.

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Register the seriousness of process it going I'm going to have fun. So when chemo chemo parties that have a family of four

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biscuits which have a little picnic corner.

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Go around la patience and have a little chit-chat.

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I've got to have fun. Otherwise. I'm going to probably go crazy as you.

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obviously that doesn't last the whole way through and they going to have mental struggles and I've suffered in the past

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quite badly with depression and I just thought I can't go down the Rabbit Hole Again

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If you're able to recognise the sort of symptoms.

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No, put a stop to it yet, but I think that's what I was trying to do a screen.

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Today if you see the bright side if you see the funny if you see the positive.

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Roll with it so I did I mean I'll be out with Mum I think this is around Christmas time.

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And we were in a London department store.

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Giant Christmas baubles and I thought I need one like it's literally my head. This is it and I think if you can.

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Laugh at yourself.

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As well cos you know I think by the end of it. I looked a bit like a spoon. You lose all of your eyebrows and eyelashes

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and you've just gotta roll with the punches like it's happening in your change my attitude for it felt like the world was

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ending yeah, and you have to accept that you have to let yourself.

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That way I know that it's normal and know that it's ok to have these feelings because it will make it easier to.

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Have a good day again exam with yourself and today. I am going to feel sad today, so don't push yourself out if you're

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feeling and I'm not yourself.

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Take a day take a couple of days. Take whatever time you need do what's going to help you if that's staying in bed for the

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next 3 days to stay in bed, if it's going out walking whatever it is. Just do it and then hopefully you'll find something

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funny in the next couple of days and I'll break your spirit and your website carry on it seems like you're going to get to

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the point where can burnt I will be with the feelings and be with that ok today. I feel low and then as you say you might

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find the energy the next day then that I wrote that I can sit on the couch with a giant chocolate bar in your pugs.

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Sucker for them on the wrist.

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My little angels, but they also.

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Like such comfort Sharon comforts.

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Taking it gently that's so kind to do it for me because on the days that I want to get some fresh air I could take them

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out for a walk or if I felt really upset and just want to suck the couch piglet would lick my head.

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My balls are constantly hours and you're so tired.

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Can't be bothered you need to do.

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and him

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She got cancer so what I was going through my treatment. She got a form of lymphoma and I was ok.

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Is it from my head?

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Incidents on the outdoor them, I don't know what I'd do without them and if that's your source of support like you know

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that there for you. It's reliable you can take them for a walk that as a way to cope and I'm a big I think if you get

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cancer.

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trust me I know it's definitely doesn't really

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One day one day definitely another area of the advocates for Georgie is the importance of talking about body confidence.

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Can you tell me about your time working with Stand Up to Cancer and glamour Magazine about body company? I really

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struggled with my body confidence and that was like since. I've been little so being diagnosed time does Thursday through

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a bit of a loop.

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You're already know I can't wait. It's going to change the meat. You know a lot of people that lose weight.

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Putting on a lot of weight you lose your hair my skin went funny. I was weak. I lost my eyebrows it. Just Changes

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Everything and it got to the point where I look in the mirror and I couldn't recognise myself. I lost my identity and I

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just thought

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is it the end of the world and it was like that for quite a long time especially from my first lot of treatment, I really

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struggled and in remission it's

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You know you reach remission and you can get.

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snap back to normal

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my long blonde hair

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Can I restore the week? You know? I couldn't get an exercise? I didn't like my body. I don't like the way I felt and I so

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just didn't recognise myself because my hair is growing but I've never had short hair before I did like it in.

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They all just got to the point where it was a really tough battle to be able to look in the mirror.

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Oh, I look really nice. I'm not take me hours trying to find an outfit because nothing matched my bald head that exactly.

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so when Stand Up to Cancer

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I mentioned that they were doing something with you. No body confidence and cancer and if I wanted to be involved with or

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Absolutely yeah, this is definitely something I need to throw myself into and I think the week before.

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the actual shoot

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I can't do this bike. What have I signed up for I'm not confident in my own skin. I can't see.

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Do a nude photoshoot and say I'm so happy with the toilet because I don't like it. I'm home.

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Just do it.

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And the day and immediately it just felt right. I mean all the crew. Love you the photographer Alex Hammond lovely.

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Obviously all the team that sounded wonderful and it was just very natural having a good honest discussion and it was ok

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to talk about the dark bits in any areas that you aren't comfortable with and how it made you feel in it was very much.

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You know cancer took my identity.

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And I don't recognise her. I am so how can I accept?

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This new me if I don't recognise me in it yes, yeah, so we did this photo shoot and it was.

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the most terrifying but apparently I've ever done and they said you were going to film your reaction ok, the one of the

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images and I thought

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That's not good. I thought it was terrible but they showed me the image and I burst into tears.

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Happiness and it was funny because I actually said you know I couldn't really associate myself with that same person on

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the screen because it's as looking at woman and I thought like strength and my hair and beauty and I could really see just

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how happy she was and I think they're going on my car.

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I don't want to look in the mirror see now look at that picture and I go.

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That's you you need to look at yourself like this and accept your body and be confident in your own skin and it I think it

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does encourage you to Embrace the things are a little bit more and Embrace the things that you don't really like to the

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minute you do.

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You have so much more power and that's how you feel just like yeah, I think so many of my friends.

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a similar thing is

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We all kinda feel the same we feel like cancer stole identity. Yeah, you know we're trying to evolve.

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How we looking and how we feeling and it's so tough because you think this isn't.

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Do I choose to be a white used to look like and obviously with that enhances its you know you can have mastectomy or lose

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limbs or there's so many things your body can go through when it's not letting you know part of the body to me, but that

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isn't was going to find you. I don't look in the mirror and just see that it's look at what your body is doing for you. I

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keep going to work with it again and that.

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I think a big thing for me is being out to say I shouldn't be.

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Where I can get my body and not want anything to do with it. I should be loving it. It's my home is trying to save me.

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I need to hear it on then.

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I hate it so that she was the best thing I've ever done. It sounds like you had a huge mental shift of the as you said

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there was no you're like.

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Wow, I don't recognise myself and then for someone almost.

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A little bit like that it was amazing to do that also. I just hope that other people were able to see it.

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Not be terrified of my bottom screen.

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Do you know if someone can sit here and say they're so terrified? They didn't like the way they look they didn't see them.

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Is that person be able to do it? So are you telling me that walk around naked no.

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You can look and Embrace the new you and just embrace what your body is going through and I don't know just try and run

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with that yeah and just roll with those yeah, and just be gentle and kind about it and everybody yeah, you are strong you

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are.

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and it's tough obviously not every day is I feel really confident in my own skin because

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No, that's not true none of us are but it's just going to be able to I think see your body in a different light not that

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it.

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negative and working against us

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You know your body is doing everything in its power to have you going to have embrace it and be confident in it and

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there's some people find out because it's it gets left out of the discussion about when we talk about the new normal and

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that might mean you work about your family as you find out so I look at me like how you feeling your body is such a better

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because then you get its medical.

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This is the treatment you're going to have your side effects. This is you know how long you going to be in it for like you

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said when you go back to work and nothing is really.

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So internal that the squishy bit inside you doesn't really get looked after so.

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I think it's very important to make sure you look after the inner. You are very wise words so really what helps you to

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cope and how do you look after your mental health then during this all of course. I mean everyone is going to be

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different.

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And as long as you can try and find something that if you're feeling low or struggling or you need a little encouragement

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as long as you have.

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Little go to list of things you can do.

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Make sure you just repeat them and for me it.

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Taking time for myself. I've been very lucky I have.

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Big support network my parents have been amazing better means I am with someone 24/7. Yeah, so is someone nearby exactly

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and I need.

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Georgie time I need to have my own little bubble where I can go off and read a book.

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Go for a walk.

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Or do anything that I just think.

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I'm in my own space that always really helps me and I said going for a walk and talking to people you have someone I

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really need to and your support network or always if you want to sit around and I found a special the start of treatment

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if I was complaining upset about something people try and fix it and I'll try and give you a

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No, no no, I just I just want to moan and I want you to agree. How awful the world is and how tall is just not away and I

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think once you communicate to everyone around you what you need.

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Falling I wanna support so for me. It's been out here.

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Talk to someone.

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if you need to

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And I've always struggled with make my anxiety anxiety is never through the roof through all of this of course. I mean

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I'll be going up to the hospital for a blood test and you know Mum is dragging me by my foot when really is not and it's

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trying to find someone that you know is going to help fix at so it's reading a book so I love reading anything with a

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little bit of yourself help or you can.

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Take your mind off completely distracted and almost like that.

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caffeine

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I think if you need to speak to someone.

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outside of your

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You know your main group of humans do so seek out counseling if you need it. Speak to your hospital go to your GP

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What is Belle know what to say and they'll know how to help you?

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I think it's like taking that first step isn't recognising I feel bad. I need help and that is so impact on its own and

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then as you said you have that less. I like that like that. You ok now. I'm going to go read a book of Monday this but if

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you are feeling so bad by yourself then it's sticking their nose.

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amazing so

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Also, then she got a little bit into you.

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Things as well and that help you as well. Cope. I really enjoy it. I am absolutely useless I like to think I'm one of

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these really flexible Yogi that you know her doing all these funnel-shaped really I can barely touch my toes, but I love

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it depending on how I feel. It's 8:40 hour of just you.

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sitting

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Practicing immobility you're getting flexible again and as I can't do heavier cos I can't go to gym because I'm used to

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being extra. I haven't got the strength. I'm tired walking up the stairs. I need to find somewhere to get those you know

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happy exercise endorphins and I find that when I do yoga.

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Play Calm like wearing back and I feel a company I feel like I've done something. Yeah, I hate myself off. I've done some

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yoga and I've got yourself a bit with a lot of its new mindfulness and meditation.

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I think that always helps the new after a transplant people sometimes don't mind your head approach to movement again

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after size that sounds like you find it something that really works for you and this focusing on that time and it's good

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for your body is good for your mind and movement. I think it's all coming at the transfer.

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I have no idea how weak I was going to have stiff. I was going to be and so excited again little walks.

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can you find

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Coming out of hospital you do you know I don't have two minute walk.

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absolutely exhaust you and I am I ever going to

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Do more get more physical or even have more energy, but it's everyday.

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I'm not even every day's whenever you feel like it.

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Just doing a little bit.

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And it really is just accepting it was going to do a little bit today little bit tomorrow.

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London all day I hit 10000 steps and it's you or no. I've just done my first you know yoga class.

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I can't wait to do next one next week as I'm going to exactly xx I got really frustrated when I came out the hospital

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thinking I'm never going to be able to do anything. I'm never going to be strong enough to go to the gym or do proper

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exercise or go running.

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And if you look like that you'll get so frustrated because you're just think the recovery is going to be so long way is if

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you if you literally take it day by day.

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Before you know it you'll be careful.

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can we sit down when you find out what works so you have Instagram so I can listeners that listen to This podcast follow

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your blog or checkout on Instagram so the best way is probably through my Instagram and Instagram is Georgie

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swallow and then on my Instagram I've got a link to my blog which is scribbles of a swallow brilliant and

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I just fine I honestly find.

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writing

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But if you have like a bit of frustration or something on your mind or you've been you know feeling a little bit emotional

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about something or even if it's a good news sitting down writing it all out.

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Getting rid of it on to your blog and I found it so so helpful and I mean you have a lot of time.

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Can you go to if you're not working a lot of time on your hands so so the words and you said let them go there because I

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think.

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Philosophy when I go through treatment their face with different with dilemmas and and different issues and things you

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can't necessarily talk in-depth with about other people because they don't understand so being able to sit.

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And get all of your feelings out on paper and you know I mean I found I just one and it was when I was talking about

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fertility treatments and I found myself writing like a pros and cons list and when I got home ok, alright have made my

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decision now.

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send it really helps this even process order situation and yeah work through that in your bed frame modern Fraser and

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Georgie

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Last but not least what advice. Would you give to someone who is going through a stem cell transplant?

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How long have you got I think for me?

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I reached out quite a few people who I know it just done one. I was very lucky. I had a close friend.

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who had

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Just a message to transfer a few months before I had as much as I wish.

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She never had to cross.

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It was very handy because she gave me a big long list of everything. I needed and on the less important scale of things

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you need to know of a stem cell transplant. What's the things in hospital? So you're going to be in there for a very long

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time and she told me take a mattress topper take your own duvet and pillows and I just never thought that I could you

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could you know sheet in those plastic crisp and she said bring it with you. You won't regret it and it.

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Honestly the best things I've bought and you know things that bring your own towel.

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Ring things to do like your books your iPad you know writing puzzles. You're probably use it for the first week and then

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you won't touch him again, but really nice to have and it's nice to have things in the room that feel a bit more homely

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like your space because they are quite clean.

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You know for enjoyment are there a hospital room so things are.

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Fake flowers I had a lovely night fake orchid in the corner and I'd wake up and isn't that lovely.

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That sounds of little things about your room.

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which

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Really really made a difference and I think before you going to send so transfer.

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Just go into it with an open mind I made the mistake of listening to everyone said and go on my expense will be exactly

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like that. You're trying to fit into.

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And really I mean when I went through I got quite unwell I had.

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Little bit of a bad experience and I had no someone else had said that they had that so I'm going you know I'm broken.

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It's not working or something. I'm doing something wrong.

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I think just going to end.

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this is going to help you you need this yet and just

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Go with the flow as much as you can and make sure you speak to me about what you need especially for the nurses the

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nurses.

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Incredible movie

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The one you're with 24/7 looking after yourself you need something if you have a question if you have a way she just need

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a good cry.

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Do it with the nurses they lie for you. They are incredible. They really are I mean I can't tell him out of meltdowns.

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You said that you cry and just be what's going on because it is going to be recognised.

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I think I'm another one that I

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I was really pleased I did is I took my own hair clippers with me cos I'm not sure it is without the hospital, but they

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have a hairdresser come in that one day a week or two days.

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and my hair was falling out and it said 3 or 4 days before the hairdressers coming in and I just thought

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Can't sit here with my hair coming out as I had my own.

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Close the door laugh.

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and that was a big help for me because watching your hair for I can be really challenging and I just

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Get it off get it done you to control. I'm going to do this. I need to do that was probably.

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Like a big day or a big thing for me, sorry.

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You are someone like me who?

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Don't like watching her that I'll be able to tolerate it.

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Hate having control things in your room having your own clippers and ownership you can bring to this is so important

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brilliant. So thank you so much for your benefit from listening to this so I really hope everything goes well with the

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rest of your recovery.

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Information on stem cell transplant recovery as well as free resources that you can download an order visit our website

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00:08:41.079 --> 00:08:48.060
anthonynolan.org will serve a fantastic support of top form. That is our patient and family where you can connect with

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00:08:48.119 --> 00:08:55.160
other patients and family members also have had experience of stem cell transplant to sign up to the form. Please visit

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anthonynolan.org 4 / 4.

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00:08:56.800 --> 00:09:05.583
We also have a patient and family Facebook page where you can access our latest posts information events and much more we

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00:09:05.655 --> 00:09:14.293
also offer a telephone peer support service for you can speak to someone at least two years ago to hear more about this

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00:09:14.366 --> 00:09:22.931
and our other patient services, please visit and support for patients you can also email us at info and answering your

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work or call us on 0303 303 0303.