Transcript: AfterThoughts - When Cancer Can’t Stop You from Aiming High [Episode 2]
Hosts and Guests
Toby Peach (Host)
Alice-May Purkiss (Host)
Luke Grenfell-Shaw (Guest)
Toby: Every day, 34 people in their 20s and 30s are diagnosed with cancer.
Alice: On the 7th July 2015, I was one of the 34.
Toby: On the 28th August 2008, I was one of the 34.
Alice: These are the stories of what happens afterwards.
Toby: This is AfterThoughts
This series of AfterThoughts is created in partnership with Life Effects by Teva and supported by Trekstock
When Cancer Can't Stop You from Aiming High
Toby: Hi, Alice.
Alice: Hello, Toby Peach.
Toby: Well, this is the... We're now coming up to the afternoon, but we have had an early start this morning, haven't we?
Alice: We have had an early start. We started early because we were speaking to the brilliant Luke Grenfell-Shaw all the way from Baku in Azerbaijan.
Toby: Luke, you might know is Bristol2Beiji-ing.
Toby: Who is pedaling, pedaling, pedaling away. And he's just like, "Oh, my..." He's a story in himself really.
Toby: And so, it's just been incredible to have him on and hear little snippets of those stories.
Alice: Yeah, absolutely. I mean, I feel like I could sit and talk to that man for a really long time. I sort of want to take him to the pub when he gets back.
Toby: That was what I thought. That was what I thought. I was like, "It'd just be nice to go to the pub."
Alice: Do you know what would be really nice actually, if one day we could take all of the AfterThoughts storytellers to the pub?
Toby: Oh, that'd be lovely, wouldn't it?
Alice: Yeah, that'd be really great. We should do that.
Toby: That'd be very nice.
Toby: But as we've heard, Luke might be away for a little while because he is still pedaling all the way to Beijing, but we could wait for him to come back really, can't we?
Alice: Yeah, definitely. Why not? He says it'll be about a year, but he says he's been saying that for about a year.
Toby: Yeah, but that was a wonderful thing, right, of him saying... I really noted that. The fact that... His whole thing is about... It's not about the... It's good to have a goal, but it's about-
Alice: About the journey.
Toby: About the journey, yeah.
Alice: Not about the destination.
Toby: [inaudible 00:02:14].
Alice: I always say that when Chris and I go out on long walks. He's about the destination, and I'm about the journey. But should we stop talking about Luke and let Luke do the talking?
Toby: Let's hear from Luke.
Alice: Toby Peach.
Toby: Good morning, Alice. How are you?
Alice: Yeah, very well. How are you?
Toby: Well, I am very excited because this morning... And it is the morning. We've got an early one because we are so lucky to have Luke Grenfell-Shaw with us. A cycling enthusiastic who is currently in Azerbaijan. Hi, Luke.
Luke: Hi. It's great to be here, Toby and Alice. Thanks so much for having me.
Alice: Oh, thank you for Zooming all the way from Baku.
Luke: A lot quicker to do this via video link [inaudible 00:03:11].
Alice: 100%. We would say that you are our furthest Zoomer, but unfortunately, you've been beaten because at last series, we had Boris Zooming in from Hawaii. And we did just check because, apparently, we're both so terrible at geography. We couldn't tell whether Hawaii or Azerbaijan was furthest away from London.
Luke: Wow. That's something to be, isn't it?
Toby: But we did... I'll say though, Luke, is the thing of going. He definitely flew there.
Toby: You've cycled all the way to Azerbaijan. So, you kind of win on that regard. Like the effort-
Alice: You get the effort points.
Luke: Yeah. By the time I get to China, will that make me further away than Hawaii? Did you run that one through?
Toby: I haven't, but I think that [inaudible 00:03:58].
Alice: Do it. I don't know.
Toby: You go for it. That's fine. Yeah. I think that probably does win you the... Yeah. So, we'll do a second round when you're-
Toby: How long, Luke, until you hope to be in China?
Luke: I mean, it's a really difficult one to try and answer. Since I restarted the ride back in August. So, I started the ride on the 1st of January, 2020. And as everyone can guess, it wasn't a brilliant year to try and cycle from Bristol to Beijing.
Luke [Cont.]: So, that kind of halted in March and I spent five months back in the UK till August and then restarted from Germany. And ever since then, I've been saying, "Oh, about a year from now, I'll be in China." And I don't see any reason to stop saying that. So, in a year from now, Toby.
Alice: So, unfortunately, you'll still be 2,000 miles short of Hawaii. [inaudible 00:04:55] again. Effort points. You definitely went on effort points.
Toby: Before we dive into quickfire questions, I want to mention about... Because, obviously, we're on Zoom, but the listeners won't be able to see. You are currently wearing your cycling outfit. Can you describe to us what the color that... Yeah. Wow. Has it changed? Has it been like... Have you had different designs and different versions of it?
Luke: Yeah. So, for everyone who can't see me, which is everyone listening, I'm wearing a blue and pink stripy top right now. It's sort of like a slightly spiraled pink and blue stripes. And then there's a big lion on the front, sort of a British lion, if you will. And on the back, there's the tail of a dragon which is linking with China.
Toby: I can just about see the Teenage Cancer Trust sign on the right side, and then you've got CLIC Sargent as well, and Trekstock up there as well. Yeah.
Luke: Yeah, I look good. And there's also 5K Your Way. Move Against Cancer. So, yeah. Good eyesight. I love it.
Toby: [inaudible 00:06:06].
Alice: Impressive, Toby.
Toby: ... it's like playing cancer charity logo. What's that game [inaudible 00:06:12]?
Toby: Bingo. Can you start then?
Luke: Yeah, but I'm supporting five incredible charities, and yet we just said four of them. And they were all charities that either helped me through my kind of time with cancer and/or really help people through exercise, which I guess is something we'll talk about, but something I feel very, very passionately about. And then the fifth charity changes leg upon leg throughout the trip. So, it was very important to me to support local initiatives.
Luke [Cont.]: And so, whereas four of these charities are UK-based, we've supported World Child Cancer, which is a project in Kosovo and I visited their hospital in Pristina, the capital. And the second charity, which we're currently supporting, is ChildAid to Eastern Europe, and visited their centers in Moldova and Ukraine. And that will change again when we move into Uzbekistan to a local charity there. So, yeah. It's really fantastic to be able to do something to support these wonderful organizations.
Alice: That is absolutely epic. Amazing. Okay, shall we do some Quick-Fire Questions?
Toby: I think we should dive into Quick-Fire Questions. Luke, are you ready for the Quick-Fire Questions?
Alice: Are you ready?
Luke: No, I'm not. [inaudible 00:07:26].
Alice: Well, [inaudible 00:07:26] just leave.
Luke: Yeah. Let's skip this part.
Alice: All right. Cool. And Luke, what pronouns do you use?
Luke: Ooh. The he one. He, his things. Yeah.
Toby: Luke, who do people say that you look like?
Luke: Ooh, I think when I've been fortunate to travel in places like Egypt and Turkey, they don't say I look like a particular person, but I'm always thought of as being Russian. Everyone talks to me in Russian because they think maybe I have a slightly Slavic-looking face. And so, I'm constantly like, "No, I'm actually from Britain, but talk to me in Russian. That's fine." Actually, the other person... Who's that guy from One Direction? Liam? Liam?
Alice: Oh, Liam Payne.
Alice: I see that.
Luke: ... there's a similarity there.
Toby: I can see that. I can see that. Yeah.
Alice: Yeah, I can see it. And what film would you say defines your childhood?
Luke: Ooh. A film that I absolutely love... And, actually, if I can have two films, one was Shrek. Reason I say it is, one, I've re-watched it. I watched it when I was first seven years old or something. And then I watched when I was perhaps 15 and I realized it was a totally different film. All the jokes that are in there for adults and I was like, "They are geniuses." So, that's the only film that springs to mind, I loved. And the other is Pirates of the Caribbean.
Luke [Cont.]: The first one, I just love Orlando Bloom. I was definitely trying... Yeah, I'd like to look like Orlando Bloom. I think I've got [inaudible 00:08:57] that vibe. And then the music. Always go to music if I want to cheer up or really focus. So, will go for Pirates of the Caribbean.
Toby: And Luke, who is your hero?
Luke: Ooh. I don't think I really have heroes. I don't know if that's an acceptable answer. I need to [inaudible 00:09:18] someone out.
Toby: No, that's an acceptable answer. That's okay. That's good.
Luke: Yeah. There are lots of people I admire and aspire to sort of certain parts of them, but I don't think I have a hero.
Alice: That's all right. And do you have any nicknames? And if yes, what's your favorite one?
Luke: Ooh. I don't know if I should be honest about this. I don't have any currently, but when I was going through school, I had a nickname I inherited from my brother. And my surname is Grenfell-Shaw. And so, that was somewhat shortened to “Greny”. And my brother was called “Greny” by everyone when I joined the school. I was then called “Greny” or occasionally “Mini-Greny”, which was not flattering.
Alice: [inaudible 00:09:57] “Greny”.
Luke: And that was a name that I've thankfully just let die when I got to university. I did not tell anyone I had nicknames in the past, so I'm really hoping that this isn't going to ruin my street cred from now on and everyone's going to be like, "Oh, Greny."
Alice: It's going to have a resurgence.
Luke: Yeah. I hope not. Blaming you if it does.
Toby: I'm sure. Okay, “Greny”. If you could listen to one song for the rest of your life, what song would you choose?
Luke: I think it would be by Sigrid. And probably I Don't Feel Like Crying.
Luke: Or The Sight of You. One of those two songs. I really love her music. Whenever I listen to it, it really... I get very buoyed by it. It's very uplifting. And I find it very relatable as well. So, I love Sigrid. Other one... I know I'm giving lots of answers, but My Shot from Hamilton. Just love it. Love it. And I just love what that... The aspiration that it contains, I suppose.
Alice: You got two big Hamilton fans here.
Luke: Oh, brilliant. Should we just start some freestyle going?
Toby: Oh my god, let's...
Alice: Roller coasters. Love them or hate them?
Luke: Fairly ambivalent. I don't spend much time on roller coasters. I think I enjoy them when I go on them, but I don't sort of go on them very often. So, they're sort of fun in their way, but don't go out of my way to find them.
Toby: And a big one here. What is your favorite way to eat a potato?
Luke: Ooh. Probably should... Why do I need to think so long about this one? Probably it would be baked in the oven, but not like a baked potato, but kind of slice it. Almost like oven-baked chips, but with some paprika and basil and stuff and just sort of mix it all up. So, it's not like a deep-fried potato, but it's sort of crispy and stuff all the thing.
Alice: We're getting a lot of roast chip type suggestions. Aren't we this series?
Toby: This makes me hungry, Alice.
Alice: Yeah. We should have thought about this. And lastly, Luke, could you give us just a one-liner on your diagnosis, please.
Luke: In 2018 when I was 24 years old, I was diagnosed with stage four sarcoma, which is pretty rare and aggressive.
Toby: First up on AfterThoughts, we are going to dive into a story of Beyond the Diagnosis. The diagnosis story is a well-trodden one for lots of people who've experienced cancer. And sometimes the stories that happen afterwards don't get spoken about as much, but we're going to pan over to Luke to hear one of those stories.
Luke: So, I guess like so many people, when you receive your diagnosis... Actually, I'm not going to start like that. I don't know why I'm starting like that. Yeah. So, I guess so many people when you know that you're going to have chemotherapy, and I knew I was going to have about six rounds of chemotherapy, one of the things you always know that's going to happen is that you're told that you're going to lose your hair or at least for most chemo regimes, you're going to lose your hair. And I was told that.
Luke [Cont.]: And so, after my first round of chemo, a couple of days passed. Talk about hair, it was still there. Yeah. A week passed and I was like, "Ah, I've still got all my hair. I'm doing pretty well." I went in for a checkup and I was like, "Hey, look at this. It's all here. You got it wrong this time. You didn't think I could cycle into hospital and well, you didn't think I can keep my hair. Well, this is a bit different."
Luke [Cont.]: However, unfortunately, the inevitable did start happening and a couple of strands came out and [inaudible 00:14:04] sort of best part of two weeks after finishing my first round of chemo. It was quite loose, but I found that if I didn't play around with it too much, I had a full head of hair still.
Luke [Cont.]: And I went up to London, actually, for a ceremony to see my dad get a new sort of badge or a medal for his time out in Afghanistan. And he didn't really do very much. He basically just sort of showed up and then left again after six months, but the army decided to give him a medal. And so, my mom and I, we went there. And we saw him get this lovely little medal. And also there was Sir Nick Carter, the head of the UK Armed Forces.
Luke [Cont.]: And afterwards, I kind of went up to him and I started getting, "Why are we in Afghanistan? Is this really the best use of our money and time?" And Nick was very polite about all of this and he was like, "So, Luke, what are you doing?" And I said, "Well, I was in Russia, but right now I'm having treatment. I'm having chemotherapy." And he was like, "Oh, you look pretty well." And I just [inaudible 00:15:12] a lock of my hair. I just dropped it on the floor in front of him. And there was a bit of a silence after that. Which is not something I had really done before. I think, actually, having a diagnosis made me go, "I don't really care. You're just another human being with a couple of medals on your chest."
Luke [Cont.]: But then, about three or four days later, I remember I was going to bed and I sort of turned over my pillow and I basically left a quarter of my hair on the pillow. That was the point where it was really starting... It was just coming out. And at that point, I went straight into the shower, and I was just pulling all of my hair out and I came up the next morning and people didn't really recognize me and it felt that was a really... Almost felt debilitating. It was very much a soul-crushing moment or something I thought I might be able to get away with it. And I looked healthy up into that point, even if I wasn't.
Luke [Cont.]: And then suddenly, there was something very harsh, I suppose, about just seeing your hair drop out. And having it left on the pillow. I didn't even... Wasn't even pulling at it. It was just there on the pillow. And that was kind of game over. And it was after that, it definitely affected the way I interacted. I nearly always wore a hat. I didn't like people wondering about whether I might be having treatment, if I might have cancer. It was all in my head of thinking, "Are people just going to think that I'm going through some sort of treatment?" And it definitely affected the way I talked to people, avoiding conversations and interactions. And I was lucky enough to do a master's at the back end of that year.
Luke [Cont.]: And for the first term, there was about 24 of us in class, and I was quite quiet. Not my usual self, but then after the January break, after the Christmas break in January, I sort of came back in and started to have some hair growing back. And then one of my mates, Rob, as I walked into the classroom for the first time, he kind of just rubs his hand on his hair, gave me a thumbs up and I just gave him a thumbs-up back. And that was such a great moment for me because I was like, "I'm back. I've got a bit of hair. It's not much, but this is kind of back to me." Actually, that was not true. I wasn't going back to who I was. It was very much a new look, but one I rediscovered a more outgoing side.
Alice: Next up, we're going to talk about the Invisible Impacts. There's so much about going through cancer treatment that you can see. We might lose our hair, as we've just talked about. We might change weights. We might have surgeries that are visible, but there's lots of invisible impacts too. So, Luke, we're going to hand over to you to hear a story about Invisible Impacts.
Luke: Thank you, Alice. Yeah. I wanted to sort of twist this around a bit because so often the invisible impacts that we talk about regarding cancer are negative. And, actually, for me, there can be some really positive impacts. And I guess I want to sort of talk about how cancer's actually really positively impacted my life. And it's something I feel incredibly grateful to have moved in a certain direction because of it.
Luke [Cont.]: I'm also still here to be able to live in a different way to how I lived before. And that's not something I take for granted. And I don't know how long I'll be able to continue doing that, but on the day that I was diagnosed with cancer, I really didn't think I had long to live. It was very advanced. It was very aggressive. And it was kind of pretty rare. They didn't really know if the chemotherapy would work. So, I very much felt like I was looking down the barrel.
Luke [Cont.]: My life felt like it had shattered. I was 24 years old and every hope and expectation, every right that I thought I had to life and having kids and climbing the career ladder, that was just taken away. And so, I went home and basically cried into the sofa, and then read Shantaram which is a great book and even better as escapism.
Luke [Cont.]: Then my dad knows me very well and he kind of dragged me outside for a run. We live in Bristol, so we were running around the downs and we went over to this Clifton Suspension Bridge. And I remember that afternoon, it was a sunny summer's afternoon, and we're looking over this gorgeous view. And my dad said to me, "Luke, if you die in three months, that is horrible, but there is nothing that you or I can do about that. But you do have a choice over how you spend these next three months."
Luke [Cont.]: And, to me, that is such an empowering attitude. And it's not an easy attitude at all, but really, if you don't have long to live, then surely that time becomes incredibly precious. And you want to do whatever you can to make the most of that time. And it's so easy to think like, "I am going to be very resentful and angry that life has dealt me this hand and I did not deserve it or it's unfair."
Luke [Cont.]: And ultimately, you can't change it. That's not going to help. And it just means that you're going to spend those next two or three months unhappy. And surely, it's better to try and spend that next two or three months doing things that make you as happy as you can be given you're still going to be going to hospitals, given there's still going to be a chemo drip in your arm, but there are still going to be things you can do to be happier. And to me, that's a win-win. If you can pull yourself up, then it's a no-brainer, but it's not at all easy to pull yourself up, but really, the invisible impact for me is how it sort of changed my priorities and valuation of life.
Luke [Cont.]: And before, I always assumed that I would be climbing the career ladder, doing a job in consultancy, doing the whole 9:00 to 5:00, 9:00 to 8:00, 9:00 to 9:00, getting a family, getting a deposit for a house. All these things that everyone tells you are important. Society tells you that these are the things that you should do.
Luke [Cont.]: However, on the day that I was diagnosed, I realized that a long-held dream of mine was the thing that I really wanted to do. And if I could only do one thing going forward, it would be that and that is cycling around the world. And so, on the day I was diagnosed, that was the sort of, "If I can get through this treatment," which I didn't think I would. "But if I do, I want to cycle around the world." And that turned into the Bristol2Beijing cycle ride. And I'm currently in Baku, in Azerbaijan, having done about 10,000 kilometers and probably about another 20,000 kilometers still to go. And it's something I just feel so grateful to be doing.
Luke [Cont.]: And I think the way I think about time has changed a lot as well. So, I now love, for example, watching sunsets. And before, I never thought they were... I was just like, "What's the big deal? Can't the sun just hurry up? I've been waiting here for five minutes for it to go down, so I can say I've watched the sunset, so I can say it was beautiful." But now, I have a very different mentality that if you're having to rush to watch the sunset... If you're wanting to get it, what are you wanting to do after the sunset that is so important? Is it a piece of work? Is it rushing from one thing to the next? Is it meeting friends or... We've all got so many calls on our time. And yet, if you don't have time to watch the beauty, then what do we have at all, I suppose?
Luke [Cont.]: It's a very peculiar thing that very often, we're always in a rush for the future because that's where we start living. That's where our hopes and our dreams are and yet we always forget to recognize that, actually, the present is the bit that's happening right now. And if we're not happy in the present, if we're not making the most of what we're doing right now, it doesn't matter what's in the future because in the future, we're going to be acting in the way that we do now, which is not enjoying life. So, it's really important to enjoy life now and feel fulfilled and do the things that make us feel fulfilled now rather than expecting that all to happen in the future because it never does.
Luke [Cont.]: And so, for me, that is part of my attitude now of really recognizing that as a society, we put a lot on hold and we ascribe a lot of meaning to future happiness. We plan for our holidays almost before we... When we sit down meeting a friend for a coffee, we're almost already asking, "Oh, when should we next meet for a coffee?" Rather than recognizing that, actually, the bit that's important is the conversation right there with that friend and if that isn't a value, then there's no point having a future coffee, but so often we say, "Okay, I'm looking forward to the holiday. I'm looking forward to the end of the school week." And that's exactly how I used to be. I was constantly trying to... When I was at school, you try and get to the weekend, try and get to the summer holiday, but if you're not enjoying the process, then you're actually just missing out on all of life.
Toby: Next up on AfterThoughts, it's the Those Around Us section, which focuses on the stories of people who might go through the experience of having cancer with us. So, Luke, over to you for Those Around Us.
Luke: So, I want to tell you about Zak. And Zak is one of my best and oldest friends. And, actually, we first met when I was starting to take my running more seriously at the age of sort of 13 or 14. I remember going to Ashton Court, which is this big kind of park space on the other side of the river Avon in Bristol. And there was this runner who was very good. And I actually discovered he was a bit quicker than me, which is obviously a bit of a problem, but ended up starting chatting to this guy, Zak. And he was just full of beans and energy. He was about six months younger than me, but six seconds quicker, for sure.
Luke [Cont.]: And for quite a long time, our friendship developed very much through the lens of running. And so, we would be basically training partners and doing a lot of sessions together, doing a lot of running, 10 mile runs on a Sunday morning. And it was a sort of thing that the pace would just ramp up and up and up towards the end. And we'd be neck and neck. And, obviously, most of the time, Zak would be [inaudible 00:27:06] me to the post and beating me. But time passed, and we hit our later teens, and we're going to parties and stuff together. And our friendship really developed into something more than just running, but actually, talking about how we feel, plans for the future, girls. What do we want to do? What are our ambitions?
Luke [Cont.]: And so, yeah. Some years passed, and still kind of in and out of contact, I suppose because Zak was in Spain, mostly. And I was doing my things. I was often in Russia, teaching. And then when I came back, I didn't actually tell Zak immediately that I had this cancer diagnosis, but yeah. I did eventually, and he was actually working out in Greece in a refugee camp, but he came back a month or so later. And really what I kind of want to draw out here is Zak's sort of support as I went through chemo in hospital in Bristol.
Luke [Cont.]: And I suppose what it really felt like was that he got it. And what I mean by that is that, actually, when you're on chemotherapy, most of the time, the last thing you want to do is talk to someone or explain how you're feeling because on the hallway, it's pretty obvious. And I do the same of... The first question I asked him with anyone is, "Oh, how's it going?" And even when I know that someone's just like, "[inaudible 00:28:39] relative?" Yeah. It's the first question I want to ask when you know it's not a great question, but it's something that's really ingrained into us.
Luke [Cont.]: And I've really felt with Zak that he didn't need to ask. He's like, "Yeah. It's probably [inaudible 00:28:54], isn't it?" I was like, "Yeah, that's about right." And then we moved on, which was the best bit, but often I find... And I found when I was in chemotherapy, not really wanting to talk. Friends would come and visit and that was wonderful, but I think you often think you need to engage a person in conversation in order to sort of feel like this interaction is important and enjoyable. And so, I was on chemo, I talked for 20, 30 minutes, have a chat, and I was like, "You know, I'm pretty done."
Luke [Cont.]: And then most of the friends would leave after that point. And that's perfectly... It's completely understandable, but actually what was really special about Zak is that he just sat and did his work. He wrote on his laptop. He read a book, and he would just be there in the room. And I think what's so powerful about that is that it really signals that although we're not having a conversation, although Luke is basically just a resting lump of meat on that pillow, he's actually still worth spending time with. It's actually the ultimate form of validation of a person and a friendship to say that they're worth spending time with even when they're not doing anything at all.
Luke [Cont.]: And that was actually something I didn't realize at the time. And that's only something I've come to realize later of how powerful that was. And it's given me a lot to reflect upon since I started this cycle, right. And, occasionally, I've had the chance... A great privilege to visit other people undergoing chemotherapy. And I remember when I visited the World Child Cancer supported center in Pristina, which is the capital of Kosovo. And I went in and I visited these two... Well, one was a teenager and the other was a little boy who was maybe about five years old. And I went in and I thought like, "I've got this. I've had cancer. I'm doing this great ride. I'm going to be able to help them. I'm going to be great."
Luke [Cont.]: And I went in and I was like, "Oh, goodness. I can't actually do anything." I can ask how you are. Rather than asking how you are, it's always, I think, much nicer to ask you to tell me about what you're excited about, what you're interested in. Those sorts of questions, but I was like, "Oh, I actually can't really do very much. What am I even doing here? Is my visit even important?"
Luke [Cont.]: My own sort of self-validation of what I'm doing and, obviously, that ego-stroking, but what I came to realize a little bit afterwards is that actually visiting and just being there can be a really, really powerful statement and you don't need to engage people in conversation and you don't need to feel like you're doing anything particularly useful. You don't need to buy them a sandwich. You don't need to, I don't know, turn or change the TV channel or whatever it is, or slice up a banana. Just being there is incredibly valuable. And that's something I learned from Zak. And I think it's such an important lesson for anyone who feels like they're a bystander, I suppose.
Alice: Now on AfterThoughts, we're going to talk about the Lost Conversations. We know that the young cancer community is getting better at making conversations happen. We are shining a light on so many things now, but there's still some conversations that aren't happening. So, this is a chance for our storytellers to have their say and tell us the lost conversations that they think we should be happening. So, Luke, I'm going to hand over to you so that you can tell us a story on your Lost Conversations.
Luke: Thanks, Alice. So, I really want to talk about exercise and diet. And the day that I was diagnosed with cancer, I was kind of like... I was thinking, "I want to try and do something to help myself." This sounds pretty bleak, but I tend to know that at least, personally, going for a run makes me feel better. And so, I spoke to the doctor and the nurses and I was like, "So, should I be trying to do some exercise? Should I be thinking about what I put into my body? Avoiding certain foods. Should I be making sure I get out each day for a walk or a run or something?" And they were like, "No, just do what you want really. It doesn't really make a difference either way." It's basically what they said.
Luke [Cont.]: And I was like, "Are you kidding me? I know how much exercise helps me. And you're telling me it doesn't matter. This is bullshit. I do not agree with this." And I'm really glad that I didn't take their advice to heart because... And I understand where they're coming from. That when you go through chemotherapy, you feel really rubbish. And to tell people that they should be doing more activity on top of just kind of existing seems like a really tall order. But for me, I think that the benefits of exercise are just enormous. And I think they're both mental and physical, and I think there's something that's really powerful in doing something that you know is going to help you even in a small way.
Luke [Cont.]: And so, knowing that you're pushing yourself to go out for a walk or just go up and down the corridor a couple of times a day, just a little bit more than you would otherwise, it means that you're also taking control of your situation and doing something that is kind of proactively helping you getting you to see slightly different things. You're not just stuck in your room. And I think that's a really important part of taking control, but then also reasserting your identity as not just a patient because it's so easy to think that... As when you go into hospital, when you've got a chemo drip stuck in your arm, when your temperature is tested and your urine is taken, you just become an object. And for me, it was a way of kind of reclaiming that actually Luke is someone who does things for himself because he decides to do them rather than everything happening to you and you being very passive.
Luke [Cont.]: But I also think there's a really important sort of physical side to this that actually there's an increasing amount of research that is coming out and saying that exercising through chemo, through radiotherapy makes it more effective and makes you less tired. And so, even though it's the kind of the last thing that you feel like doing, it's so, so important. And when I try to go for a walk every day that... I was in the hospital for four days at a time. I was connected to a chemo drip or sometimes the saline for 20 hours out of every 24.
Luke [Cont.]: So, I had four hours off and I would always try and just get out even for a short walk. And, occasionally, I always brought my bike into hospital and I had it connected to one of those indoor setups, so I could cycle in my room. And sometimes I use that as well. And it wasn't too hard. It wasn't for long, but it was more than nothing. And to me that is the real take home message of doing a little bit more than you would otherwise because it's going to help you mentally and physically just cope with the treatment a little bit better.
Luke [Cont.]: And I think this is something that's going to become increasingly part of how we treat and sort of prescribe getting through chemotherapy and radiotherapy and having the best outcomes. And when I did it, there weren't any guarantees. I did not know what was going to happen and I knew likelihood, it probably wasn't going to make any difference, but it's about taking those steps to give yourself the best possible chance of getting through it, I think is so important.
Luke [Cont.]: And so, [inaudible 00:37:06] very glad that that happened and... Yeah. About the diet as well. When I got into the chemo ward, I was just amazed that there was this fizzy drinks. There were crisps and cakes, and I was like, "How is this going to help your body?" And I know like... Again, when you're going through a pretty rough time, you're not going to necessarily want to eat kale, but I think it makes a huge difference. And I know this [inaudible 00:37:37] doing sport and just from turning vegetarian and then vegan, it makes your body feel better. And that to me is always the motivation for this is cooking the food in an interesting way with spices and herbs and it makes it exciting. And I think it's also just really important in terms of how your body can cope with things like chemo and radiotherapy. So, those are my sort of two things I'm trying to wave the flag for and get sort of doctor's advice to change a bit because it's going to help.
Alice: I love that. I think there's a couple of really good things that kind of jumped out to me there. The idea of more than nothing when it comes to exercise. I think that's such a great jumping off point because I think it's so easy to become overwhelmed by the thought of exercise when you're in treatment, but more than nothing is such an easy way to kind of quantify it. Trekstock have a really fantastic program that they run. Obviously, Trekstock are supporting this series of AfterThoughts, they have an exercise program called RENEW, which we just want to give a quick shout-out to.
Alice [Cont.]: RENEW is an exercise program, which is run by specialist cancer rehab trainers and they basically help young adults get moving after cancer treatment. And it's basically exactly what you're saying, Luke. They have done loads of research into the fact that cancer can help you feel better [inaudible 00:39:10] exercise. They've done loads of research that proves that exercise can help you feel better when you're going through cancer treatment. And also, I worked with Trekstock on a resource about food and cancer treatment and it's a really, really useful guide for anyone who's feeling overwhelmed by the kind of all of the conversation about nutrition and cancer. So, just a couple of shout-outs there for Trekstock and the resources that they have available, but yeah, just the idea of more than nothing really struck me.
Toby: Next off on AfterThoughts, we have the Not Your Average section, which is to dive into a story which somebody who has experienced cancer will have gone through that somebody who has never experienced cancer might not have had to experience [inaudible 00:40:08]. After that experience, again, everybody, that's fine. So, Luke, let's hand over to you for Not Your Average.
Luke: So, I want to take you back to the time when I was doing my master's and I was really fortunate to be able to do master's alongside the treatment that I was having. And for me, actually, that was a really, really positive thing to take the focus away from the treatment and give me an identity beyond the patient and beyond the hospital and kind of be treated pretty normally as well. So, that was fantastic in a number of ways. And I'd had my chemo and surgery at this point and I was having radiotherapy and on my left shoulder, and that's where the primary tumor had been.
Luke [Cont.]: And as chemotherapy happens for two or three weeks, nothing seems to be happening in that area too. Then gradually, the skin starts to break down and sort of look more red and kind of be like a rash. And then it got infected. And that was really a bit of a turning point because I had this big section on my back, maybe the size... A bit larger than an A5 piece of paper that just ended up getting covered in little pustules. It was all red, it was all covered in pustules and it was itchy as hell. And putting cream on it, and I ended up being in lectures with this horrible sort of sensation of wanting to scratch my back, knowing that it was a really bad idea and kind of feeling a bit gross and icky.
Luke [Cont.]: And I really remember there was a time when I went to the Handlebar Cafe, which is a fantastic cafe in Oxford. Does a great flat white, and I went to the toilet just sort of, I don't know, take off my shirt or put some cream on or try and put a big plaster on it or something. I took off my t-shirt, which was this blue navy t-shirt. And it was just covered in dead skin and puss, and it was kind of caked and it was a really horrible moment. It felt quite dehumanizing to see all of this come off my own body. It was really revolting.
Luke [Cont.]: And at that point, I was like, "This is something that all my other course mates..." They're just getting on, writing their essays. They're focusing on whatever it is, the extracurricular activities, the partying, the sports. And right now I'm looking at a pile of my own puss on my t-shirt. This is gross. I'm quite gross. And I felt quite isolated in that moment that I was going through something that they really were not. And it was one of those, I guess, low points. It didn't feel there were that many low points, but it was one of those times I was like, "This is really not very much fun," but I guess, equally, life goes on and you're there to study. There's some interesting stuff and there are still opportunities and you have to crack on with a disgusting shoulder. And that's what I tried to do. And I remember a touch rugby match that I was playing in, and before the start of it, I was in the changing room, luckily by myself. And I sort of just took off my under-vest and I was just like, "That is gross." I put it back on and you play and it's really nice that you... I was still just very fortunate to be able to do that, to be honest. So, I guess that was my story.
Alice: Last stop, as always, we are going to talk about the bits of cancer that make us laugh because sometimes cancer can be funny. It's hard to say, but it's true. So, Luke, here's your chance to make Toby and I chuckle with a story about cancer that was a little bit funny. Over to you.
Luke [Cont.]: I'll do my best. So, this is going back to just after I'd finished my chemotherapy and I was having brunch with a group of friends. And, of course, at this point I had lost all my hair, had a pretty puffed out face, but I was really looking forward to the opportunity of just having a nice, relaxed, brunch and [inaudible 00:44:56] cooking away in the kitchen. And we still have pancakes. They were my specialty, so I cooked a lot of pancakes. A whole mountain of pancakes. And I thought that was a normal amount. Apparently, it's not. I have quite a large appetite and they were like, "You've cooked 20 pancakes. Are you sure?" / "[Inaudible 00:45:11]. I'm sure they can get eaten." And all sorts of lovely things are on the table.
Luke [Cont.]: There was avocados, there were eggs, there was yogurt, and there was cereal, and all of this. And passing round the bowl of yogurt and one of the girls was like, "Oh, there's a hair in there." There was a [inaudible 00:45:33] pause and I was like, "Wasn't one of mine." And there was this pause again. And everyone was like, "Was he joking?" And then they looked at my face and they were like, "Oh, okay. We can laugh. It was a joke." Okay, great.
Alice: I love those moments when everyone's like, "Are we allowed to laugh at that?"
Toby: And how much better it makes everybody feel once you get that first laugh in and they go, "Oh, thank God. Luke's all right with this. Okay. That's good. [Inaudible 00:46:06] my words."
Luke: Yeah. Yeah. It was the elephant in the room.
Toby: Yeah. So, she went back to the yogurt though. That's fine.
Luke: Yeah. The hair was removed and... It wasn't tainted by chemotherapy, obviously. So, it was safe to consume that yogurt.
Alice: Oh, fantastic. [crosstalk 00:46:26].
Toby: Well, Luke. Thank you so much for being on the podcast and for coming when you're not in the UK and being... I'm so glad we've been able to schedule this and have the opportunity to have you on and hear some of your incredible stories.
Alice: And Luke, can you tell us... Well, tell the listeners where they can find you, find out more about your adventures and more about what you're doing because I definitely think people will want to know more about what you're doing. Please enlighten us.
Luke: Yeah, absolutely. So, the name of the game or the ride at least is Bristol2Beijing. That's a number "2". So, Bristol2Beijing, if you search for that on Instagram, on Facebook, on your social media, then you can find us. There's also a website, Bristol2Beijing.org and most excitingly of all, because if you like podcasts... If you listen to this, you like podcasts. There is, in fact, a Bristol debating podcast and each week I chat with Kate, who's actually an incredible person. She's also a “Can Liver” and I think she'd be awesome in this podcast, but we make a podcast each week about what's happened to me on the road, who I've met, what's happened, any funny stories or anecdotes and, yeah, my thoughts on trying to across Eurasia in a pretty crazy year. And it's something that I'm really stoked share with as many people as possible. So, yeah. Wherever you get your podcasts, just search for Bristol2Beijing.
Luke [Cont.]: And I'd like to say, Toby, Alice, thank you so much for this opportunity to witter on for a good few minutes and for some really interesting discussions as well.
Alice: Oh, man. It's been such a pleasure to have you. Thank you so much for giving up your time and chatting with us. Honestly, your stories have been fantastic and we have loved having you.
Toby: Yeah. Thank you so much, Luke.
Luke: No, thank you.
Alice: Thank you.
Toby: Alice, that was Luke. What an incredible story, what an incredible journey he is currently on. And we have heard some amazing parts of that.
Alice: Yeah. I feel like we've only scratched the surface with Luke. I feel like there's so many more stories that could come and will come out of his adventure. And I feel so lucky that we got to spend a couple of hours with him while he's on this incredible adventure. And I'm just great to hear some of those stories.
Toby: [inaudible 00:49:09] there was so much in-
Toby: ... Luke's story. And when we talked about this just before Luke started, we're like, "Oh, wow." We haven't spoken to Luke before, but we've seen a lot of his story.
Toby: It's that thing of going... So, there's this young man who has had an experience of cancer and now has gone on this epic journey. And there is something in like... And on seeing that. And when you start to dive into all of the... You get deeper into that story. You're suddenly uncovering so much of what is so much for many people who've experienced cancer. There are so many relatable moments in there that have led into that.
Alice: Absolutely. Yeah. And I think this is something that you and I have talked about a bit and it kind of comes off the back of what we were chatting about with Karen yesterday as well. You don't have to be an incredible "cancer survivor" and inverted commas. And I know I always say "cancer survivor" in inverted commas. And you don't have to be.
Alice [Cont.]: And this is the thing, right? I think Luke would have been incredible regardless of cancer. I don't think it's cancer that's made him incredible. I think he probably was incredible anyway, and this is the thing about people who go on to do amazing things and make decisions to do amazing things. They would have just been incredible anyway.
Alice [Cont.]: That is something I think about Kris Hallenga. People say, "Oh, she's amazing." But she would have been amazing because she... But she's not amazing because she's had cancer. She's amazing anyway. And this is the thing that people say about cancer patients and people who've had cancer. They would have been amazing anyway, and they're not amazing because of the cancer.
Alice [Cont.]: And I just think that... That's something that I really... Yeah. Something that I really believe in. And it's a message that I really push home to people a lot. It's something I think about a lot. Toby, what is your afterthought on this episode of AfterThoughts?
Toby: Well, I think for me, there's something in the perspective that Luke was talking about. And the conversation he had with his dad and-
Alice: Oh, yeah.
Toby: ... being... Yeah. How do you want to live these next three months of going, "You can't do anything about the inevitable," which is us learning our mortality. And we had a conversation about us as young people who have learned our mortality at a young age and how that shifts everything.
Toby [Cont.]: Sometimes that can be difficult, but there is also an element of what a gift it is to learn about it at a young age, so that it's not something that suddenly is like, "What do you mean?" When you've reached the later part of your life and then suddenly becomes apparent. It's something that I think is something you kind of have. And then you might kind of like... If you go through a treatment like that, and then... Sometimes, it goes away a bit. Sometimes it comes back in full load and stuff like that, but I really took that from Luke's story and... Yeah, the spark that he had because of it.
Toby [Cont.]: And you said earlier like, "Yeah, he's a pretty... He probably would have been brilliant anyway." Yeah. I can totally see that. And I wonder... Then this conversation with his dad. The spark that just kind of unlocks this thing of going, "You're right. Why have I not thought like that before?"
Alice: But you do not think though like for his dad to have said that to him, those things would have been ingrained in his upbringing anyway, right?
Toby: 100%. No. Yeah, I think it's that thing of going... He didn't need... There was 100%. I think that he is obviously got this drive and this determination and his adventurous side. But I think there's something about learning and mortality.
Toby: I do think there's something to that-
Alice: Yeah, definitely.
Toby: ... which is something that young cancer patients and young people who are beyond a diagnosis just get in a way. And we don't want to have got it. And we talked about that as well, right? Sometimes you go, "Oh, God. I really wish somebody like my partner or my friends, they understood that feeling." But you also don't want them to have to go through the experience to get there.
Alice: It's a version of Dan's world, isn't it? It's a version of the world that Dan talked about in series one.
Toby: Yes. Yes, yes, yes. I thought Dan's world you were just about to say, it was like a theory.
Alice: Dan's world is a theory.
Toby: Theory of Dan's world. Yeah.
Alice: Toby, it is a version of Dan's world, I think. It's maybe a slightly more permeable version than then the version they were talking about, but yeah. It is a version of Dan's world. I think it's... Yeah.
Toby: Alice, tell me, what are your afterthoughts on today's episode?
Alice: My afterthought on today's episode of AfterThoughts, I have to come back to that idea of more than nothing.
Toby: Oh, yes.
Alice: And I think that's something that we can apply to so many facets of life, not just exercise, but I think there's so many places where we can apply it. And I think we need to give ourselves credit for the times when we are doing more than nothing and there's so many times when we are doing more than nothing and we just need to appreciate that and give ourselves a little pat on the back, a little hat tip and say, "You know what? We're doing more than nothing, and maybe that's enough."
Alice: But yeah. I think yeah. More than nothing, that's something that I think I might stick it on my pin board in front of me.
Toby: Oh, yeah. I'm feeling like that. I might just not get it. I'm going to write it in my hand for the day, and that's going to be my first step to holding onto that.
Alice: It's a fantastic mantra.
Toby: Lovely. Indeed, it is. So, thank you so much to Luke for coming to us-
Alice: Ah, [inaudible 00:54:53] legend.
Toby: ... all the way from Azerbaijan and bringing us his stories. And thank you for being the listeners who are taking in those stories into your ears and hitting play. Bye.
If today’s episode of AfterThoughts has brought up any thoughts or feelings that you’d like to speak to someone about, we really recommend grabbing a cuppa with a friend, or dropping them a message.
There are also tons of charities out there who can help you if you’ve been through cancer and need a bit of extra psychological support.
Thanks so much to Trekstock for supporting another series of AfterThoughts. Trekstock helps young adults diagnosed with cancer to get moving again after cancer stops them in their tracks, and the work they do is incredible. Find out more at trekstock.com
This series of AfterThoughts was created in partnership with Life Effects by Teva - an initiative shaped by patients, for patients, to help those with chronic illness live better days. Find out more and read articles written by those living with and beyond cancer at lifeeffects.teva
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