What is cancer? How creativity helps Toby share his story

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welcome to episode 8 of Anthony Nolan patient services team podcast

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And I'm the patient and family engagement coordinator Anthony Nolan through this we hope to provide you with different

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insights into the experiences of having a stem cell transplant.

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We'll be looking at what life can be like before during and after transplant as well as talking with healthcare

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professionals for advice and guidance.

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We will also hear from patients and family members who will share their personal stories and experiences with you. We hope

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you find this helpful and informative.

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Buy to eat as a creative Theatre maker performer and director at work includes the eulogy of Toby peach which is the story

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of tobit experience of Hodgkin's Lymphoma at the age of 19 and then again at the age of 21.

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Can we had an auto stem cell transplant and shares of experiences of self mortality through humour and honesty 10 years on

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to be now work for the rate of young people who are fat and uses art and Drama to express these poignant experiences and

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insightful and entertaining way.

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Here's a clip of Toby and action.

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What is the fastest sperm 270 days before the 9th of the 18th of December 1988?

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Is the night the 18th is in 9424 to 100?

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88 hours which is 13 million

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571000

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180

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That time I spent about 180000.

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What's 172 episode?

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Star Trek next

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4000 minutes kissing which

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Not very much.

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It took me today.

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75 to make it to that first

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Play a game of spin the bottle.

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Where I deliver the line.

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happy Chris

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After I finish kissing the girl.

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scouts in 9 years

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405 evenings learning about Notts

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Never got a not bad.

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a mum a dad and my brother Tom who is

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4 years

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9800 hours were spent.

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588000 minutes

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I dressed up as a bandicoot one, so it's

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9 times by the same girl at school

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the age of 10

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I never told anyone.

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lowest diagnosed from cancer 2102000 minutes ago

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570 1290

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I'm still here.

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somehow

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Still here.

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Will be chatting today about to experience his work and what he's up to now.

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Hello to thank you for coming onto the it's great to meet you and it's really inspiring inside of you to share your stuff

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having having a stem cell transplant. What brought you do that decision to tell your story.

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So it was maybe 3 years post-treatment and I was trying to understand a little bit more about what happened to me.

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I wrote this very short story actually maybe a I think it was like 5 minutes long.

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for a

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I was thinking a true story is a Battersea Arts Centre and I I wrote that about.

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The science of the stem cell transplant and in doing that and then researching I realised I had no idea what happened and

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then I start doing a little bit more research and I read the emperor of all maladies a biography of cancer in incredible

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credible book and again really just made me aware of going home now. This is a huge thing. I think I've kind of

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Stopped it off a little bit and I've been trying to.

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I'd like to know what what did happen and so looking at it and understanding and a bit and realising.

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What like I've had cancer and I don't know what it is for people who have not had cancer. How are they supposed to know

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what it is and particularly?

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I was really interested in where hope comes from and

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In learning quite a lot about how the signs of cancer.

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Is just you and this idea of cells replicating and the language that was being banned about about how I thought this thing

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and how brave I was just.

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fascinated by

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The Premiership then going well actually I was fighting myself and rice.

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Saying that he was telling me I was doing was actually this rebellion and also.

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interested in going well actually if I didn't save myself because this thing happened to me my cells and replicated and

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then I was in an uncontrollable way actually then he did save me because

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What means that we have hope something?

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Ok, and then you went on to do the eulogy so.

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What means you go down that Avenue right? Yeah, so the eulogy kind of came about because

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This feeling of trying to paint that picture of like that I was I'm I'm a storyteller and I realise that telling stories

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about cancer is incredibly difficult and because so many people have connections to a bit also a lot of the time. We we

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see that word we hear their stories and no I don't want to talk about that. I don't want to talk about that and

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I think it's really important to talk about it. I think it's really important to clean as we go into a world where it's

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one in 2 people directly impacted by it so I was like how do I make how do I make story interesting and

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One of those things were going well actually I need to I need to make something entertaining. I need to make something

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that people are going to sit there and go as I'm talking about something very dark and there are moments of varied moments

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in it but actually the reality of going.

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there's a lot of lightness that comes from the like an experience of cancer and

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If I want people to listen and to have a conversation with an audience about that I have to make something that is going

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to make them feel comfortable uncomfortable at the right points obviously.

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have the moments where audiences are gonna laugh where they're going to engage with it when I'm going to connect with her

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kind of a story that that moves them as well and that's the wonders of and

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turn other art forms as well, but for me I would came from a theatre background and said that was kind of my way into it

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and

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then

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Edinburgh Fringe Festival with something I never thought about doing it seems like a long time ago that I did it was like

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for four years ago now something that went up and that was where you did you started and again? I'd never never been up

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there. I've never made a solo show before.

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Cute and the idea was that cancer is unfortunately. It's a terrible one man show when you play all the parts and so this

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premise of what cancer is and that show was looking to clear.

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The reality of the fight for telling me about and how I actually I played two characters in that show myself from one that

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looks incredibly like me and how they're kind of.

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They're like the conflict between them is the reality of my cancer diagnosis is how do you find the humour in at Tilbury

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for some patients? They find it really difficult to talk about. How do you find the humour in this store?

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the humour comes from the honesty and one of the things is never a joke at the expense of

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The the difficult moments as well, it's to look at how we make those difficult moments engaging so there are examples in

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that he there is some stuff about an affair with an IV stands and lots of people have relationships or IV stand had a

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blood cancer any most cancers. I guess and I built the store which was about how easy at my ID stand kind of girlfriend

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and how that relationship.

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And how she was this kind of bad influence on me that she shaved all my hair that we do drugs together and like but the

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reason why that the way to talk about it was to talk about loneliness and Cheryl about how a lot of time. You've spent on

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your own and you think about your mortality and

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hunting these things

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When your life I was 22 when I was kind of in that kind of reality I guess so.

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finding the way that somebody can

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understand what that might be about it's really important because unfortunately people aren't going to sit there and

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listen to me moan about cancer and I wouldn't want them to anyway so

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It's just finding a way to make it accessible. My guess is in the way you do that like your character to the ivy style and

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that's really cool and how do you find your audience response when you sell your story I think.

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Over the years there's been a real sense of understanding an audience wants from a cancer story and it's very difficult to

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anticipate and respond to it a lot of the time as well. There is a certain audience of choosing to come and see you so

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they show about cancer which is why perhaps theatre is.

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Is good and useful appointable also inaccessible in some ways as well because the difficulties in certain people coming to

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choose to see that show it's really difficult when Netflix is so.

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had incredible responses years ago on I've been I am feel very privileged about that understand that where it's coming

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from is from her that place of of facts and a real life and that is the inspiration to make the show and

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And a lot of the time. I find the people of finding moments that they are perhaps either.

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yeah, I had that experience or my friend that might be what they're feeling that yeah, and and then there were moments

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that are relatable to one that's

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That's the thing about cancer experiences that so unique there is no one way of telling it and I'm that's one of the

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important things again about trying to stay true to the story.

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send tell somebody else's story I can use my own as an inspiration to talk about it and

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Particularly, I think talking about.

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Hope is probably the hardest words for fighting cancer because so many people are getting affected by and so many in a

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negative way.

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One of the things what about being so hope is important in a cancer story because we need to know where it comes from so

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that we can give more people hope in the future and the unity very much looking at the history of of of cancer as well and

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looking at how Sony 72 years ago making just checking that 72 years ago that the father is leukaemia in Boston and that

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was the start of chemotherapy and it I'm really interested in how 72 years ago. I would have no chance there was no answer

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me if I was diagnosed them, am I recite point is my nan's brother he died from a blood cancer and probably before that

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time as well as it's just this igniter.

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If I was diagnosed then no chance and comparing yeah where we've got yeah, and it's the same.

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The paint going this is where I hope has come from from the developments that come over these years this incredible people

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that pull together and how humanity is the thing that actually gives us hope.

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When I'm quite.

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I explore the fact that I don't think I did as much like I'm looking at them who they do the thing that saved my life and

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looking at these things again actually that's that's with hope comes from from the from the research from the wonders of

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the NHS for my treatment and those loved ones around you pull you through those hard moments and

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And it's not to say.

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Let's just stop there Pat herself on the back to acknowledge of going that's where I hope comes from so that keep pushing

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down those roofs that put the funds into these amazing kind of developments and things so that gives more patience.

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Absolutely about that goes and it's not feel very lonely, but then there's the healthcare professionals your family and

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friends, so it's nice to can a tiny bit of a like on that you know through creative works which is amazing so on that note

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it's very evident how creative you are you're very talented different theatres Entertainment channel. So what are you

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working on at the minute?

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There are arranged with the particular. I found as I mentioned earlier.

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She was show that I've been privileged to show two over coming up to 6 hours and people across the world and I'm so so

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fortunate to have to go and do that one of things about how do we make the stories accessible to others and how do we make

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sure that people are finding it something they can pick up because people are getting in and been getting in touch saying

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can I can I have a copy Script can I see a video of it and the difficulty is that as it is a theatre show you can only do

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it in certain kind of moment and there's the at the gate around that so one of the things. I was trying to do was go well

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actually, how can I make sure that others can pick it up and say I'm really interested and have been developing a way of

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making it into a graphic novel and this is through my own experience of going actually.

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I would not read that Script if I was diagnosed now. I would not read The Script the emoji like it's not something. I I

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just think it it doesn't.

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Translate the way that I would like it to it and actually if I want young patients to pick it up, but also people who find

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cancer is something that is quite hard to look at I don't think you're going to pick up a script about cancer, so I was

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really interesting and so what would I pick up and one of the first things I picked up after about 3 years again was a was

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a graphic novel had a tiny little bit about his he had hodgkin's lymphoma and I just was like actually I picked this up

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because it was beautiful perhaps because I thought it was going to be something really heavy and there are so many

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incredible books out there and things and I was just really interesting over. How can I

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Use the unity which has got a lot of scope for these kind of magical worlds that occur and graphic novels a lot more

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perhaps then than a regular book and so yeah, that's the that's one of the next step so that peace is looking at ways that

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we can find that projects so that we can make the whole book and get it into particularly into the units units across the

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UK and making.

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accessible for young people like that's always been one of the things about the ug is that

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Young people engage with it and I know that is something that is very difficult to do for cancer and so I can find a way

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that this graphic novel can keep doing that and reach different audiences who wouldn't engage with something like a

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theatre show then that's what I would love to do that. So there's a lot of benefits to having that are in the different

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hospitals.

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Can we have so many great creative about that? How would someone be able to find out more about you and accessing meet us.

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So you can go on on Google or other search engines are able and I'm just hoping peach fortunately. I seem to be one of the

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only type of features out there particularly talking about cancer. So yeah, so beach.co.uk or I'm on Twitter and like to

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drop me a line if you're fantastic to speak to them about your recovery after stem cell transplant. Yeah, so I was perhaps

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in a state of like.

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Learning how to be well again for a number of months.

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I think and actually I'd say that's the physical side of things over number one's in the mental side of it is a lot longer

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and I'm really keen to talk.

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How the end of the story is not at the end of treatment a lot of your time and they're the eulogy does stop a treatment

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that's that's that narrative it starts and ends with leaving the room and going home and actually one of the important

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things. I've seen afterwards is how much we have to talk about the afterwards and how important it is to tell stories that

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don't just end with treatment. I made another show two years ago, which was called the other side of a hurricane and that

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was another young patient and that was about trying to acknowledge that there are a lot of things that continue Honour of

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invisible impacts as well as visible ones I guess and play again through. I need talking about my own experience of a

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young person who has experienced. They are going well actually there are things about identity.

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This guilt there's like the emotional responses that happen beyond something like cancer at young age because it's such a

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particular that happens in your formative years and I I think that's one of the hardest things to talk about is how I

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might look.

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Better now wow and I might have looked well. Maybe a year post-treatment and people go yes, are you at Great fantastic?

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Actually either the transition into to being a healthy person. I guess again or I got still ongoing and I think it will

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always be ongoing in a way that the narrative pastry and doesn't doesn't end in a miraculous way, and how important it is

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to talk about that because there are questions that have been opened up at a young age that you're living with the rest of

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your life and a lot of young people who I speak to you in work with are facing a similar things of how how best to talk

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about the fact that they're still like struggling with anxiety. They're struggling with going well. Who am I now? I'll be

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on treatment and what do I do next so?

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I think it's so important to keep keep these conversations going is that we are finding ways to to talk about those people

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who are coming like who are in Treatment that actually we start having these narratives that paint the picture of actually

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it does go on and the sooner we start talking about that the sooner we make it easier for those people who are having the

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same questions.

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Yeah, because it's not something that point and then you just forget about it has a huge impact on your life. So you're

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totally right to have those questions and explore those feelings and yeah whatever for their individual. I was really

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should I got discharged. Maybe 18 months ago or something and I wrote a piece about how.

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I felt like it was it was like a break up like this amazing break up but also like how how much I missed my that that

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safety net and people on our website can Healthcare world of how that that kind of cut-off point when you are discharged

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and which is an incredible thing and it really is but it is also something like is checking me I really want that person

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to check my my lumps and bumps I want to know if somebody's looking out for me and again. That's the whole thing is how we

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make people understand that I want you just like really happy that you like finished.

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Like seeing a doctor in your cured. That's me doing the bunny is it in podcast?

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So yes, how to make people understand that has happened that actually then I went to a stage after that happened when I

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was like really difficult to go well now. I'm not having something to me if I do who do I go to your face from feeling

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worried about something ok? Look after myself. I don't have to but usually they would be available if you needed them, but

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I know what you mean. It's a different sort of stage of the the journey mercy.

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Do you find Toby that your audiences are familiar with hodgkin's lymphoma and stem cell transplant lot of the time. I

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think the audiences who are choosing to come to a cancer show up perhaps have got some kind of bleach about it, but I

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don't think a lot of the time the you know what cancer is until perhaps it at first you may be directly or indirectly but

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also if I can use my own example even after having it. I had no idea what it was. I mean. They're so often I described

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that cancer being an account so kind of experience and treatment of cancer is a little bit like being in a hurricane and

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so often like you just kind of Spinning Around you're saying yes to everything and I'll take that I'll have this. I'll

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have that and and then if you want you can throw now.

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The other side then you carry on spinning for quite a long time and you can't get your feet down. I properly and then

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there is a moment you can perhaps put your feet down like a solid stance and suddenly.

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Unless you looking over your shoulder at this wreckage and perhaps not even knowing what I gone on there and that's where

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I decided that. I was really interested to know what.

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Was that what what is hodgkin's lymphoma? What is a stem cell transplant and yeah like I said like no idea really see the

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science of it and how incredible it is I mean I really remember just Desserts

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Really strong memory which is in the eulogy and as we drove quite a lot of money to tell the story was about just coming

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out of collecting my own stem cells and so I had an auto transplant and so we have to go in and have them collected and I

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went in at uclh just up the road and had them taken out the number of hours. You do and then left in that bag which looks

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like.

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Automatic catch up again. It's really like not impressed. I remember at the end of that day being told that they taken out

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9 million stem cells and

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Ok, and then I left and I went across the road to go and have some dinner.

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Sat down there because you're over just leave and I'm being sat down and eating this dinner and going.

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I just taken out 9 million little bits of me.

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I can go home.

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And I was like how have I done this? How do you take out 9 million little bit of somebody and then they can go home and

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play just really

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Play me realise how incredible our bodies are an incredible the treatment was that point.

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so

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Yeah, it's one of those things are going that is an incredible moment which perhaps I didn't even notice through going

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through it and it's only through reflecting on it and then trying to create some kind of accessible content makes that a

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little bit more. Yeah, open I guess the discussion that we can make you understand what them foamers and watch them cell

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Transplants are and social memory to that and how that meant so much for the time is the next step in your treatment, so

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well, that's really interesting memory question for you. What advice. Would you give when he's going through a stem cell

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transplant?

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I think the advice I find the

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One of those things the uniqueness of an experience I guess is the difficult thing and acknowledging that whatever is

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whatever you can do to be good for yourself is the important important thing in this time.

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Regardless of whatever can see you you have or how your treatment is going you are the one who can know about what's going

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on for you and your mind and also in your body. I guess so it's about being kind to yourself through a treatment for me

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that was perhaps like making sure that I was looking after myself mentally by a distracting myself from from the

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treatment. I guess or being kind to myself and making sure that I'm buying a cup of coffee that I really want to have

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something like that and it's completely unique to everyone but the important thing is this is your your own unique

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response to it and

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As the process goes on its finding ways that you can make it as and cope with it as best that you can.

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Only you will know where that is I guess.

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Very very good. Bye, then. I think you're right. It's the small things can make a difference of tuning in the yourselves

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and what's important to me today. Maybe as you said that cup of coffee and it's just taking it went by moment in that way

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as well. So that begin with me today to be I know a lot of people benefit from listening to this on your story and what

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other work we'll come up with in the future. So thank you so much.

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Thank you for listening to Anthony Nolan podcast if you find this podcast useful, please share on Facebook Instagram

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Twitter and let us know what other topics you like to hear.

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For more information on stem cell transplant recovery as well as free resources that you can download an order visit our

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website at the moment.

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I take a look at a patient and family pages.

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We also have a fantastic supported platform. That is our patient and family forum or you can connect with other patients

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and family members have also been through the same process.

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Define up to the form, please visit anthonynolan.org form.

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We also have our own Anthony Nolan patient and families Facebook page or you can access our latest posts events and much

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more.

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We also offer a telephone peer support service or you can speak to someone who had a transplant at least two years ago to

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hear more about this order see other ways we can support you and your family you can also email at patient info at

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anthonynolan.org.

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the colours on

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