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Body confidence after stem cell transplant

EPISODE 9: BODY CONFIDENCE AND EMBRACING CHANGE AFTER A STEM CELL TRANSPLANT: GEORGIE SWALLOW’S STORY

Georgie Swallow, 27, was diagnosed with Hodgkin Lymphoma in 2018. Following chemotherapy she had a relapse and needed a stem cell transplant. Georgie tells us what helped her through her transplant, including her time in hospital isolation.

She also explains how she regained her body confidence after treatment and how blogging (and her pet pugs) helped her recovery.

Full transcript (auto-generated)

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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.