Latest / Not Your Grandma’s Cancer Show / Too Young for Bowel Cancer?

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Too Young for Bowel Cancer? · Not Your Grandma’s Cancer Show

0:01
Speaker0: Hi, this is Tatum. I'm just popping in before the episode starts
0:05
Speaker0: just to say, in case you know of anyone that
0:09
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0:17
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0:22
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0:25
Speaker0: Shine. We're a team of 10 people,
0:29
Speaker0: and yet we do so much and make so much impact. But we
0:33
Speaker0: can't do it without support. So head on over to our website shinecancersupport.org
0:39
Speaker0: and tell your friends, especially the runners.
0:42
Speaker0: From Shine Cancer Support, this is Not Your Grandma's
0:46
Speaker0: Cancer Show.
0:51
Speaker0: Hi, I'm Tatum Duroc, and today we are
0:55
Speaker0: talking about bowel cancer. This is part of our series of diving
0:59
Speaker0: into specific different cancers, and to do this today,
1:01
Speaker0: I'm I have the best
1:05
Speaker0: guests. Let's get going. This is Not Your Grandma's Cancer
1:09
Speaker0: Show.
1:10
Speaker1: Not Your Grandma's Cancer Show.
1:12
Speaker0: I've got Matt,
1:13
Speaker0: Renee, and Chris. All of you, welcome to the podcast.
1:17
Speaker0: Thank you so much for being here.
1:19
Speaker1: Lovely to be here.
1:20
Speaker2: Yeah, thanks for having us.
1:21
Speaker0: So I've got a question for
1:24
Speaker0: you. What is one of the strangest things that someone
1:28
Speaker0: said to you after you said your diagnosis?
1:31
Speaker0: Matt first, and then we'll come to Chris, and then Renee.
1:34
Speaker3: Well,
1:34
Speaker3: I've had a few odd cousins, you know, recommending strange
1:39
Speaker3: things like cumin and other sort of herbs
1:43
Speaker3: and alternative therapies.
1:47
Speaker3: I have been on a few newspaper articles where they
1:50
Speaker3: end up publishing it online, and you also then, you know, never read the
1:54
Speaker3: comments because the opinions that people say about sort
1:58
Speaker3: of, oh, he probably ate too much bacon. There's often a food-related
2:02
Speaker3: response. That's something I've heard of.
2:06
Speaker3: Not always the funniest, but, you know, I get it, because we're talking about bowels
2:10
Speaker3: and poo and other things.
2:12
Speaker0: I was gonna say, yeah, I mean,
2:14
Speaker0: these are the things that make having bowel cancer a bit different
2:19
Speaker0: from some of the other experiences of cancer.
2:22
Speaker0: And that thing of food and diet
2:26
Speaker0: is, yeah, definitely something that I've heard.
2:29
Speaker1: Chris, is this
2:30
Speaker1: something that's Yeah, I think to add to what Matt
2:34
Speaker1: said, I had various seeds recommended
2:38
Speaker1: to me, another sort of slightly outside of the NHS provision.
2:43
Speaker1: I've also heard of cumin, which might have broad, you know, broad good
2:47
Speaker1: powers, antioxidant powers, but isn't quite the same as eritrican or something like
2:51
Speaker1: that.
2:51
Speaker3: Ooh, that's—
2:52
Speaker1: I've often heard— I know it's one of the few medical
2:55
Speaker1: terms I remember. So yeah, I've had some unusual things. I think
2:59
Speaker1: the best reaction I had was, that's terrible news.
3:02
Speaker1: Because that's like flat batting something. It is terrible news.
3:06
Speaker1: And I just laughed at that because that was an honest reaction. It was a
3:09
Speaker1: reaction I appreciated. I knew this person really, really well. And so I think that
3:13
Speaker1: you get a number of sort of different reactions.
3:16
Speaker1: I think the awkward ones where people don't say anything or they can't because
3:21
Speaker1: they don't know what to say, and that's almost a way better. The ones where
3:24
Speaker1: obviously you get a really honest reaction where you might get,
3:27
Speaker1: you know, someone Upset. You do get those slightly unusual
3:31
Speaker1: reactions. I think one of the challenging ones I had was when someone says,
3:35
Speaker1: oh yes, my friend, cousin, auntie, mother's dog.
3:40
Speaker1: There's no sort of hierarchy of cancer, but you don't really need to
3:44
Speaker1: hear about that story, because you're trying to give your story. So I think the
3:47
Speaker1: best reactions, the most amusing ones, were the honest ones saying, that's terrible news.
3:50
Speaker0: That's terrible news. Yeah. And that's why we called
3:54
Speaker0: this not your grandma's cancer show, because that was the thing that
3:58
Speaker0: I used to get all the time. Oh, my grandma had that.
4:01
Speaker0: And you're like, that's great, she got to be a grandma, you know?
4:04
Speaker0: Um, it's, it's different depending
4:08
Speaker0: on the, the time of life that you're in. And yeah, it's not that it's
4:12
Speaker0: fine for grandmas, like, that's not the, the thing, but it's
4:15
Speaker0: just different, isn't it? Renee,
4:18
Speaker0: what about you? Any, any strange responses or,
4:21
Speaker0: or particularly honest ones?
4:25
Speaker2: Um, I mean, I think the one thing that, um, strikes me, it still happens
4:29
Speaker2: sometimes if I say to someone like, you know, a few
4:33
Speaker2: years ago I had cancer, I would say 99.9% of people assume
4:36
Speaker2: I had breast cancer. So they'll say like, oh yeah, my friend had breast cancer.
4:39
Speaker0: Oh yeah.
4:40
Speaker2: Like, oh, but you know, you can't tell if, you know,
4:43
Speaker2: and stuff. And I'm like, nope, nope, not me. Yeah.
4:46
Speaker2: So it's, um, and even within Shine too, we have a great community in Shine
4:51
Speaker2: and, but it is kind of more common to have breast cancer
4:54
Speaker2: as a female than bowel cancer. So yeah. Yeah.
4:58
Speaker0: So that
4:58
Speaker0: thing of that, that kind of prevalence of even what someone might expect
5:02
Speaker0: your cancer to be, and then needing to go, actually,
5:06
Speaker0: that's not what it is, is a very different way into a conversation
5:10
Speaker0: when you're coming up with that clarity. And Renee,
5:14
Speaker0: tell me, you've been on the podcast before. I'm so glad
5:18
Speaker0: that you're back. Renee was on a, a great episode
5:22
Speaker0: about traveling and of traveling
5:27
Speaker0: right after a diagnosis. And, um, but I'm so
5:31
Speaker0: glad that you're back to find out even more about you. So what was happening
5:35
Speaker0: in your life when you were diagnosed?
5:38
Speaker2: I was actually diagnosed when my
5:39
Speaker2: daughter was, um, 8 months old. So my symptoms
5:42
Speaker2: actually started really soon after giving
5:46
Speaker2: birth, and immediately everything was labeled as
5:49
Speaker2: postpartum. I think because it started so quickly after
5:53
Speaker2: giving birth, it was like, oh, you've got rectal bleeding, It's hemorrhoids,
5:57
Speaker2: period. Like, oh, you're losing weight. Well, you're losing
6:01
Speaker2: the baby weight. Or, oh, you're really tired. Oh, you've got a baby.
6:05
Speaker2: That sort of thing. So it was— I saw
6:09
Speaker2: a GP 8 times, never got
6:13
Speaker2: a referral, and then ended up seeking—
6:18
Speaker2: I basically self-referred into the private system and
6:22
Speaker2: got a referral that way. It was, uh, not an—
6:26
Speaker2: there's never an ideal time to get a diagnosis, but it
6:30
Speaker2: was particularly, particularly complex for me and
6:34
Speaker2: challenging and still is to this day, kind of, um, just how
6:38
Speaker2: it happened and the timing of it, that sort of thing.
6:40
Speaker1: So.
6:41
Speaker0: And this was
6:41
Speaker0: your first child? So yeah.
6:44
Speaker2: And we did IVF
6:45
Speaker2: to get her as well too. So it was also a rocky road to get
6:48
Speaker2: pregnant and, um, Yeah.
6:50
Speaker0: And I'm thinking,
6:51
Speaker0: like, your body has already gone through the biggest changes it
6:56
Speaker0: can go through. When you go and you get told,
6:59
Speaker0: this is hemorrhoids, oh, this is normal, it's not like you had been
7:03
Speaker0: pregnant before, just given birth before, been a mum before,
7:06
Speaker0: and knew it wasn't right for you. In that process
7:10
Speaker0: of going back again and again,
7:14
Speaker0: what was it that That made you go, actually, I can't,
7:17
Speaker0: I, I can't believe it this time. I, I have to
7:22
Speaker0: keep going. Like, what was the thing that happened that made you need
7:26
Speaker0: to seek out a specialist?
7:28
Speaker2: It just lasted for so long
7:31
Speaker2: and just seemed to be getting worse and worse and worse. And, and I also
7:35
Speaker2: think there's just some gut feeling, you know, that I just knew that
7:39
Speaker2: this wasn't hemorrhoids and Yeah.
7:43
Speaker2: And my husband also was like really pushing me because he was like, you know,
7:46
Speaker2: this is not right. And, and at that point, when I finally
7:50
Speaker2: got diagnosed, I was also sick all the time.
7:53
Speaker2: Just like every week I had a high temperature for something and no
7:58
Speaker2: one else around me was sick. You know, just all these weird things were happening.
8:00
Speaker2: So I knew that something was going wrong in my body and I
8:04
Speaker2: needed to figure out why. The other thing too
8:08
Speaker2: is I actually credit my pelvic floor physio with saving my life.
8:12
Speaker2: I think physios are amazing. Period. But so I live in Salisbury,
8:16
Speaker2: and we have a pelvic floor physio, and she's kind of famous in our town
8:20
Speaker2: for doing what she calls a mummy MOT. So after you give birth,
8:23
Speaker2: you go to her, and she kind of does this full check for 90 minutes.
8:27
Speaker2: And I find— I went to her about 6 months after my
8:31
Speaker2: daughter was born, because the GPs kept telling me it's postpartum, it's postpartum, it's postpartum.
8:35
Speaker2: So I said, okay, I'm gonna go do this mummy MOT and figure out what
8:38
Speaker2: about postpartum is causing this. Like bleeding, for example.
8:42
Speaker2: And within the first 15 minutes of the appointment, she was like, you need a
8:46
Speaker2: fit test. Have you received a fit test?
8:48
Speaker2: And, um, and I said no, like, what's that? And,
8:52
Speaker2: um, and she was like, you need to ask for a fit test. So I
8:55
Speaker2: immediately called the GP the next day, was denied a fit test,
8:59
Speaker2: had a follow-up appointment with her, and she said, I will call your GP
9:02
Speaker2: or you need to see a specialist. Which do you prefer? Um, and so
9:06
Speaker2: I said, okay, I'll make an appointment with a specialist. And that's how I kind
9:10
Speaker2: of got the diagnosis. So she also was like really instrumental
9:14
Speaker2: in, in pushing me to get more answers because she,
9:17
Speaker2: she was the one really who like flagged it.
9:20
Speaker0: Yeah. And sometimes
9:21
Speaker0: you need that, you know, you can know things in yourself,
9:25
Speaker0: you can go, okay, this is too long. But to have somebody go,
9:28
Speaker0: actually, this does need to get checked out, like that, that confidence
9:33
Speaker0: to then keep going. I love her too. I have
9:36
Speaker0: not been to Harvard. To have that kind of advocate
9:40
Speaker0: on your side, and it didn't work out with the GP,
9:43
Speaker0: so you ended up circumventing that. Can you
9:48
Speaker0: tell me a bit about your treatment?
9:49
Speaker2: I was lucky in a way.
9:51
Speaker2: So when I first was diagnosed, they, they staged it at
9:54
Speaker2: stage 3 because they saw some enlarged lymph nodes, and— but they planned
9:58
Speaker2: to do surgery first and then chemo afterwards. Um, but when
10:02
Speaker2: they did surgery, so I had lower anterior resection surgery because It
10:07
Speaker2: was rectal cancer. They took out 17 lymph nodes and none of them were affected.
10:10
Speaker2: And so, um, my surgeon actually said that there, there's not going to be any
10:14
Speaker2: benefit to chemo. So in the end, I, I just had surgery, which I think
10:19
Speaker2: is good. I've heard, um, pretty, you know, I've heard that chemo is pretty
10:23
Speaker2: challenging for any cancer, but yeah, for bowel cancer as well. So,
10:26
Speaker2: and I was operated on by a robot, apparently. I found out the
10:30
Speaker2: day of my surgery. It was only the second time he had used the robot.
10:32
Speaker0: So.
10:35
Speaker2: But apparently it went well,
10:36
Speaker2: so...
10:36
Speaker0: Oh, good, good. I'm glad that the
10:40
Speaker0: robot did as it was told. You were already going
10:43
Speaker0: through massive life changes, um,
10:47
Speaker0: becoming a mum, and then you're thrust into diagnosis,
10:51
Speaker0: then thrust into treatment. How did
10:56
Speaker0: you find then going, oh my God,
10:59
Speaker0: I, I now need Yeah.
11:03
Speaker0: ...the effects of this treatment.
11:06
Speaker0: And, you know, in terms of being aware of
11:11
Speaker0: if it's coming back, or what the signs are to look for,
11:15
Speaker0: how did you sort of find— and I
11:19
Speaker0: know this is such an overused word of normal,
11:23
Speaker0: but nothing feels normal after treatment,
11:25
Speaker0: after Surgery, right? So how
11:29
Speaker0: did you sort of go, okay, what am I supposed to be alarmed by
11:32
Speaker0: now, or not, or reassured by?
11:34
Speaker2: I find that particularly
11:35
Speaker2: difficult, um, because I think before the surgery— I think it's a weird
11:39
Speaker2: thing, and probably a lot of other people relate to this— but I feel like
11:42
Speaker2: when you get diagnosed, you can only take in so much information. I think your
11:46
Speaker2: brain is like dealing with the diagnosis itself. But at the same time,
11:50
Speaker2: I feel like I didn't receive like information
11:53
Speaker2: about the surgery and the implications of it beforehand,
11:57
Speaker2: or even just kind of a warning of like, this might happen,
12:01
Speaker2: you know, or like you might go to the toilet 20 times a day and
12:04
Speaker2: that's normal. And, um, you know, I don't know Chris and Matt's stories, um,
12:08
Speaker2: but like rectal cancer. So when you have lower anterior resection
12:11
Speaker2: surgery, there's a syndrome called LARS, lower anterior resection
12:15
Speaker2: syndrome, which is just basically kind of like urgency
12:19
Speaker2: clustering. There's all sorts of, um, sort of. Like a tick list you
12:23
Speaker2: can go through, but a significant portion of people who have the surgery have Lars.
12:27
Speaker2: And I didn't know it existed until 6 months after my surgery.
12:31
Speaker2: Um, but I definitely like had some form of Lars for the
12:36
Speaker2: first 2 years. Um, I would say, and, uh,
12:39
Speaker2: and I, I was terrified because I'm like, this isn't, this isn't
12:43
Speaker2: a normal bowel function. This isn't, you know, and, uh, and the thing
12:47
Speaker2: which really helped me actually was that I found a Facebook group, um, for people
12:51
Speaker2: in the world with Lars. And I was like, I found my new normal,
12:54
Speaker2: essentially. Like what you were asking is essentially it's, you know, thousands of
12:58
Speaker2: people from all over the world talking about their like crazy bowel functions.
13:01
Speaker2: I'm like, oh, I fall in this spectrum. So that's good.
13:04
Speaker2: It's like, you know, I don't fall on a normal person's spectrum
13:08
Speaker2: at all, even now. But I do fall on that
13:12
Speaker2: spectrum. And it was a great place to say like, oh, this is how I
13:15
Speaker2: deal with— typically it's people either fall on the really loose side or the
13:19
Speaker2: really constant And people have their tips on how to deal with both.
13:22
Speaker2: And, um, and it, it has been a really great
13:26
Speaker2: resource, actually, to, to understand more about what my
13:30
Speaker2: new body—
13:30
Speaker0: Yeah.
13:32
Speaker2: Yeah.
13:32
Speaker0: And it's like figuring
13:33
Speaker0: out where to go for those things, isn't it? Kind of like,
13:37
Speaker0: okay, like, what do I do with this? Because it can feel so lonely.
13:41
Speaker0: And like you said, kind of, yeah, like, where,
13:45
Speaker0: where is your new spectrum? You know, because it isn't where it
13:49
Speaker0: used to be. It isn't where your friends are. It isn't where your family is.
13:52
Speaker0: So it's having to step outside and find
13:56
Speaker0: those, um, yeah, sort of bowel buddy friends
14:02
Speaker0: that there is a point of comparison.
14:05
Speaker0: Kind of talking about the side effects, one of the last episodes
14:08
Speaker0: we did of the podcast was all about sex, and that
14:12
Speaker0: was something that was also affected For you, wasn't it,
14:15
Speaker0: Renee?
14:16
Speaker2: Yeah, absolutely. I mean, because of where the
14:19
Speaker2: surgery was, it was really low down. So I have a lot of internal
14:23
Speaker2: scar tissue as a result of the surgery.
14:27
Speaker2: And yeah, it didn't start immediately, but maybe 6 months after
14:31
Speaker2: the surgery, I started to have actually like pretty bad pain
14:34
Speaker2: with penetration. And unfortunately as well, like, I don't want
14:38
Speaker2: to just, you know, talk bad about my medical team and things, but when I
14:41
Speaker2: did go to them and say, I'm having this pain, and this is— I never
14:45
Speaker2: had this pain before. And they said I should probably seek, seek like
14:50
Speaker2: psychotherapy for it, and just really kind of dismissed
14:54
Speaker2: it as having been a result of the surgery at all.
14:57
Speaker2: But again, like pelvic floor physiotherapist, she has been really
15:02
Speaker2: great to help with that, as well as like online communities
15:06
Speaker2: actually have kind of helped to find Um,
15:09
Speaker2: you know, ways around that. So, and it was just also something
15:13
Speaker2: that I don't think I was just mentally prepared for. I think, you know,
15:17
Speaker2: I just, you can never be mentally prepared for everything, um, that might come along,
15:21
Speaker2: but was an additional challenge on top of everything
15:26
Speaker2: else. Yeah.
15:26
Speaker0: And there's 2 things in there, like you mentioned
15:29
Speaker0: about information and how much information can
15:34
Speaker0: you absorb? Do you want? And then there
15:37
Speaker0: is the thing of when you start to have the side effects, you really need
15:41
Speaker0: that information. Like, it becomes, um, not just
15:45
Speaker0: something that's nice to have, to find those friends online
15:49
Speaker0: that are able to go, oh yeah, no, that happens to me all the time.
15:52
Speaker0: It's been happening for a while. It's, you know,
15:55
Speaker0: basically you can reassure yourself. But also other people
15:59
Speaker0: to go, yeah, like, it was painful for me during sex. Because when you're
16:03
Speaker0: told, oh, it Could be if you go see a psychotherapist,
16:06
Speaker0: you know, there is a thing of like, oh, is it me?
16:11
Speaker0: As opposed to, is it scar tissue? Is it something
16:14
Speaker0: else? And so if someone was sort of listening to
16:19
Speaker0: this and going, you know, at the beginning of being diagnosed,
16:24
Speaker0: is there anything that you would say kind of about information
16:27
Speaker0: about what you sort of— wished that you could have
16:31
Speaker0: done with it sooner or had kind of
16:35
Speaker0: like a system of like, oh, when this comes, go there?
16:40
Speaker2: That's a good question. I think it's interesting because I actually have gotten a lot
16:43
Speaker2: out of social media, like these Facebook groups and stuff. And it's interesting
16:47
Speaker2: because before the diagnosis, I was not on Facebook
16:52
Speaker2: groups or looking at any of these things. Um, so I
16:56
Speaker2: have found it really useful to find community in that way. And I
17:00
Speaker2: still do look for like expert resources. I'm not just like consuming all my
17:04
Speaker2: information from social media, but there is something to be said for finding people
17:09
Speaker2: with similar experiences and, and feeling less alone in it
17:13
Speaker2: and, um, and things. And also sometimes it just feeling more like
17:17
Speaker2: human and not medicalized.
17:18
Speaker1: Mm-hmm.
17:19
Speaker2: Because also sometimes when you do get information
17:21
Speaker2: from clinicians, like, It's very cut and dry and medical and, you know,
17:25
Speaker2: statistical and all these things. But,
17:28
Speaker2: um, yeah, so I don't know. I would just say,
17:31
Speaker2: like, when you, when you feel like you have the capacity, join a
17:35
Speaker2: Facebook group and then just don't look at it until you're ready to, like,
17:38
Speaker2: consume that information, until you're ready to ask a question and things.
17:42
Speaker0: But, um, yeah, it's almost like just having
17:45
Speaker0: a couple of things maybe ready, um, but knowing
17:49
Speaker0: that you don't have to, there's no pressure to. And I could really see Matt
17:53
Speaker0: nodding There. I'd love to bring you in. How has
17:57
Speaker0: it been hearing from Renee?
17:59
Speaker3: Many things are completely relatable,
18:01
Speaker3: a very different journey, but at the same time, by hearing things
18:05
Speaker3: like, you know, the need to advocate for yourself, that actually the need
18:09
Speaker3: to challenge. And there's so many things like at certain times you need
18:13
Speaker3: really good medical advice, then other times it's about living
18:17
Speaker3: your life and doing other things and all that kind of thing. So that sort
18:20
Speaker3: of phases. So yeah, But we, I think everyone that's had or living
18:24
Speaker3: with cancer have different journeys from,
18:27
Speaker3: you know, you know one, you know, you know just
18:32
Speaker3: one person's journey, but actually there's lots of overall things
18:35
Speaker3: I think we can all relate to. Yeah.
18:39
Speaker0: And for
18:40
Speaker0: you, at the beginning, would you say that you were a
18:44
Speaker0: person that wanted all the information? Did you want less information?
18:48
Speaker0: And has that changed over Over time?
18:51
Speaker3: I'm optimistic, but I'm an informed optimist. So I need to make sure
18:56
Speaker3: that I— and also need to understand the system, like,
18:59
Speaker3: you know, the NHS. And I've learned a lot.
19:03
Speaker3: You've got to know your enemy. And it does depend on where
19:07
Speaker3: you are, like in an emergency situation, in a
19:12
Speaker3: thing where we're talking about, okay, treatment, or are we going to have this surgery
19:15
Speaker3: and this kind of thing. then you've got to be informed and have
19:20
Speaker3: your medical team. So my A-level biology perhaps helped a little bit,
19:24
Speaker3: who knows. But yeah, I think— but you
19:28
Speaker3: also have got to realise what you aren't, and you're not all of these experts.
19:31
Speaker3: And actually, it was helpful for me to appreciate how things worked, and that there's
19:36
Speaker3: this multidisciplinary team, the MDT, that get together.
19:39
Speaker3: You've got to respect professionals, but also realise that
19:44
Speaker3: there is certain mechanisms There's certain egos at play.
19:48
Speaker3: And for me, things started 5, 6 years ago, and I've had different
19:52
Speaker3: oncologists. And an older oncologist perhaps had a different behaviour
19:56
Speaker3: to my more recent oncologist. And realising how that
20:00
Speaker3: stuff works, it just makes— like, you know, we're saying,
20:04
Speaker3: Mona, about being an advocate for yourself, but also having— making
20:08
Speaker3: sure you're building the right team together, I suppose.
20:11
Speaker0: And these are the things that don't always get talked about. And you sort of
20:14
Speaker0: imagine, when you haven't had cancer, that there's sort of
20:18
Speaker0: this, oh, this is gonna happen. And then, you know,
20:21
Speaker0: you're sort of led through this process. And actually,
20:25
Speaker0: the process to getting diagnosed can
20:29
Speaker0: be full of wanting to believe and then losing trust,
20:33
Speaker0: and then having to advocate. And then when you get information,
20:37
Speaker0: that can then frame the experience going forward. And so with
20:41
Speaker0: each of those ...situations, and every time there is a ball dropped,
20:45
Speaker0: what do you advocate? Which things do you do where?
20:49
Speaker0: And that kind of brainpower going on at
20:53
Speaker0: the same time as, Matt, you were saying, like, there's one thing to be
20:57
Speaker0: unwell, but you also want to, like, you know, do things in your life.
21:01
Speaker0: But that isn't always discussed.
21:05
Speaker0: Can you tell me a bit about what you were doing when
21:09
Speaker0: you were first diagnosed. Tell me about your life.
21:12
Speaker3: Well,
21:12
Speaker3: like many people, I was all— I was in lockdown because it was 2020.
21:17
Speaker3: So we were going through those— that weird phase where we're— where some
21:22
Speaker3: person told us to stay at home and we obeyed. So for me,
21:26
Speaker3: I was 39 and running a small
21:30
Speaker3: business with 2 kids, 2 and 4.
21:36
Speaker3: Probably, you know, sort of working for the future
21:40
Speaker3: a lot, you know, thinking about working hard now for the future.
21:45
Speaker3: Yeah, that was fairly normal,
21:48
Speaker3: reasonably decent dad, father, friend,
21:52
Speaker3: work colleague, I'd hope. But yeah,
21:57
Speaker3: the cancer stuff had barely touched my life. And I
22:00
Speaker3: think, you know, at that period, were all in COVID. That was where it
22:05
Speaker3: all happened for me.
22:06
Speaker0: And so what was the process of getting diagnosed
22:09
Speaker0: for you?
22:11
Speaker3: Pretty rapid,
22:12
Speaker3: because I had a 2-week period of intense pain.
22:17
Speaker3: A phone call with my GP on a Friday saying, oh, we'll try— bear
22:22
Speaker3: in mind, we were still in a lockdown phase, I think, in September of that
22:25
Speaker3: year. And, oh, we'll book you in for an ultrasound
22:29
Speaker3: in a bit, but it probably will have gone. We might get you some baclofen
22:32
Speaker3: and you know, because you're probably constipated.
22:36
Speaker3: I headed down to
22:41
Speaker3: my folks that weekend, so we must have had some ability to move to give
22:45
Speaker3: my wife a weekend off. Little did I know that was going to be one
22:48
Speaker3: of her last breaks. But yeah, it was very rapid
22:53
Speaker3: and massive sudden pain, heading into an emergency
22:57
Speaker3: room. I learned about different scans because initially someone
23:00
Speaker3: just gave me an X-ray and it didn't show anything, and they sent me home
23:02
Speaker3: and said everything was fine. And then it escalated
23:07
Speaker3: further, and the CT scan was the thing that was clearly
23:11
Speaker3: something. And that's when I remember being in hospital and seeing a team of
23:15
Speaker3: people gathering and then looking over to me and then coming over. And I'm
23:19
Speaker3: quite upset, you know, when you see a cancer lanyard over one of the nurses,
23:23
Speaker3: you thought, well, hang on, something serious here. So yeah,
23:26
Speaker3: it was a— they opened me up, got rid of
23:31
Speaker3: 2/3 of my large intestine, and then we progressed
23:35
Speaker3: from there. And then I started learning about biopsies and mutations
23:39
Speaker3: and lots of treatments and all that kind of thing. So yeah,
23:43
Speaker3: it was unlike— and I hear so many stories of, you know,
23:48
Speaker3: us younger people with cancer, where it's
23:52
Speaker3: a long period of, oh, it's of dismissal. For me,
23:55
Speaker3: it was that emergency situation.
23:59
Speaker0: And in that, you're thrust into it, of course. So quickly. So you
24:03
Speaker0: were saying kind of that these layers of information that you're then like,
24:06
Speaker0: okay, now biopsies, now this, now, you know,
24:11
Speaker0: getting a hang of scans, but you're already on to the next thing.
24:14
Speaker0: While you were processing all of that, was there something
24:18
Speaker0: that was helpful to you or anything
24:22
Speaker0: that wasn't helpful?
24:24
Speaker3: I soon realized that when you went
24:25
Speaker3: to different people and spoke to different people, they often asked you what you knew
24:29
Speaker3: about yourself. And realizing that one system has one
24:33
Speaker3: bit of information. It helped that I was a bit of a studio
24:37
Speaker3: manager, project manager. Me and my wife started building up a spreadsheet and putting
24:41
Speaker3: all the information. We had an audio recorder,
24:44
Speaker3: so we recorded conversations with oncologists.
24:48
Speaker3: Then you get a letter back saying,
24:51
Speaker3: the young gentleman, and how much time you're taking.
24:54
Speaker3: Suddenly, you realize 15 minutes of time for them is a lot of time.
24:59
Speaker3: Yeah. Good documentation. research. I found— so
25:02
Speaker3: I have this BRAF mutation, which is the same as Baobab.
25:06
Speaker3: And Renee, you mentioned about social media. She became a North
25:10
Speaker3: Star because we ended up following quite a similar treatment
25:14
Speaker3: plan and routine. And, you know, actually finding
25:18
Speaker3: some people that were knowledgeable, but had better
25:23
Speaker3: success than statistics. All of that starts
25:27
Speaker3: building things up. But you don't— I mean, I'm amazed, I suppose, in a
25:31
Speaker3: way, of what I've absorbed and the knowledge I've gained over the time and what
25:35
Speaker3: I've retained. But in those first few weeks, I wasn't remotely
25:39
Speaker3: there, and that's absolutely fine. You shouldn't have that on you, on you, and you
25:43
Speaker3: can't be responsible for how your parents or siblings
25:47
Speaker3: are going to respond. And I, I think, you know, and also
25:52
Speaker3: maintaining that momentum, like, you get loads of gifts
25:56
Speaker3: and vouchers for Cook or food parcels.
26:00
Speaker3: But 6 years on, I'm not getting them anymore. So there
26:04
Speaker3: is a, you know, there's a pace. And I think you've got
26:07
Speaker3: to realise that you can't possibly retain all of the information.
26:11
Speaker3: You have to build up a team that you trust.
26:13
Speaker0: And did you feel like
26:15
Speaker0: you sort of needed to protect your loved ones from
26:19
Speaker0: some of the information?
26:20
Speaker3: I remember driving,
26:23
Speaker3: kids in the back, and my wife Sarah.
26:26
Speaker3: Driving often is a good time where you can have conversations without too much
26:30
Speaker3: distraction and all that kind of thing. We agreed fairly early to
26:35
Speaker3: be totally honest with our children.
26:38
Speaker3: If they ask a particular word, the word
26:41
Speaker3: cancer for our generation and older generations has a massive impact. For them,
26:45
Speaker3: it won't. It'll be like, this person's got asthma.
26:49
Speaker3: If they ask a question, we would always
26:52
Speaker3: give them the honest answer. Having said
26:56
Speaker3: that, and I think partly because a lot of my early experiences in surgery,
27:01
Speaker3: in first-line chemo, were by necessity
27:05
Speaker3: alone, because we still had masks and no access to hospitals,
27:09
Speaker3: I did a lot of that on my own.
27:13
Speaker3: And Daddy going for treatment on a Friday just sounded like
27:18
Speaker3: he was going for a treat, you know. And I would say I'd put
27:22
Speaker3: on my, like, optimistic treatment jacket when I go in to
27:26
Speaker3: get hooked up to some drugs. And that helped me because it's like, you know,
27:29
Speaker3: you get to know nurses, even initially if they only— you only saw half
27:33
Speaker3: of them because they had masks on. And that
27:36
Speaker3: helped me build my own confidence to get on
27:40
Speaker3: with the on it and with it. And maybe it helped a few other people
27:43
Speaker3: as well, because they're not— as much as they try and make these environments upbeat,
27:48
Speaker3: there's plenty of people hooked up to drugs and of different age groups all feeling
27:52
Speaker3: a bit sad. So yeah, I, I, it wasn't until later on when
27:55
Speaker3: we were able to show the— my wife and my
27:59
Speaker3: kids where I've been going that I realized that I
28:02
Speaker3: had been making too light. Like, you can have a Post-it
28:06
Speaker3: note on your fridge saying, we're not going to be defined by cancer,
28:11
Speaker3: But then we eventually take that off because it gets replaced with some receipts.
28:14
Speaker3: And, you know, and you can go too far. You can go too far to
28:17
Speaker3: make— because it is a bloody big change in your life, right?
28:21
Speaker3: Um, and so, yeah, I think I probably went
28:25
Speaker3: too far at one point, um, to sort of hide what I was going through.
28:29
Speaker0: Yeah, and I can imagine, you know, it sounds lovely,
28:32
Speaker0: kind of a confidence jacket for going out on a Friday night, but it
28:36
Speaker0: sounds a bit exhausting. To have that on for long periods
28:40
Speaker0: of time or feel that it has to
28:43
Speaker0: be put on or that, you know, it's expected.
28:47
Speaker0: When did you sort of realize that it would be
28:51
Speaker0: good to get more time for you to kind of sort
28:55
Speaker0: these things through, to kind of talk them out with someone,
28:58
Speaker0: time without any jackets?
29:03
Speaker3: I realized a little bit too late. I realized,
29:07
Speaker3: you know, I mean, I'm a moderator for Bowel Cancer UK Stage 4 Forum
29:11
Speaker3: on Facebook, and I realized that one of the things I realized, I was giving
29:14
Speaker3: people advice that I myself weren't always acting upon.
29:19
Speaker3: And it was things like, you know, I run a small business and getting my
29:24
Speaker3: mojo motivation back for paying the mortgage, you know, because those
29:28
Speaker3: things, you know, are still there and you can't live every day like,
29:32
Speaker3: ta-da, it's an amazing day. You've still got to learn the dishwasher and put the
29:36
Speaker3: bills, you know, put the bins out and all those kind of things. And I
29:39
Speaker3: was continually struggling with that.
29:42
Speaker3: After lunch every day at work, it'd be because
29:46
Speaker3: I'm the boss, I suppose, I could get away with not doing
29:50
Speaker3: so much in the afternoon and watching too much at-home TV.
29:54
Speaker3: But that doesn't give you peace or
29:57
Speaker3: anything to be proud of. You know, you've got to have purpose and motivation.
30:00
Speaker3: So those are— I've identified that I'd been dragging
30:04
Speaker3: along and not actually, you know, doing much
30:08
Speaker3: that I was proud of. And that's where I said, well, actually, I need
30:12
Speaker3: to get, you know, some support with the mental side of things.
30:16
Speaker3: Because the medical and the intensity of,
30:19
Speaker3: like, surgery and other things, that was all for then,
30:23
Speaker3: you know, out the way. So, yeah.
30:27
Speaker3: And like many trusts, there's charities that provide—
30:31
Speaker3: for me, I got 12 weeks of counseling. And I still got
30:35
Speaker3: a little note on certain things of like the little— for
30:39
Speaker3: me, little mechanisms help. And I realized that I was bundling my medical
30:45
Speaker3: admin into my wellbeing admin. It's a totally different thing.
30:48
Speaker3: You know, for some people, medical admin— you've got a wheel of life,
30:52
Speaker3: if you like, and your medical admin might just be taking, I don't know,
30:55
Speaker3: a vitamin C pill every day or something like that. For us,
31:00
Speaker3: for me, it was lots more other treatments. But that isn't the same
31:04
Speaker3: as actually doing things good for your wellbeing. It's entire—
31:08
Speaker3: it's just, it's become a bigger pie chart. So things like that were
31:11
Speaker3: helpful from talking to someone and then not telling
31:15
Speaker3: you how to fix it, but actually giving you a few things of try this
31:19
Speaker3: and think about that.
31:19
Speaker0: Yeah, I like that separation of
31:22
Speaker0: the two. And actually, the more medical admin that you have,
31:26
Speaker0: kind of the more wellbeing things you know, to refill what
31:31
Speaker0: all of that's drawing from. Thank you,
31:35
Speaker0: Matt. Uh, Chris, how has it been for you hearing from Renee and,
31:39
Speaker0: and Matt?
31:41
Speaker1: Well,
31:42
Speaker1: informative, at times amusing. I love the thing about the receipts on the fridge.
31:45
Speaker1: That, that sings to me. Yeah, I think it's always— the
31:49
Speaker1: reason Shine has worked really well for me is that
31:53
Speaker1: different people will approach, as you know, Renee, Matt, anyone else would have done,
31:57
Speaker1: they'll approach their cancer diagnosis, the cancer story differently, and you've got to you
32:01
Speaker1: want. It's like, uh, getting married or having a baby. Basically ignore
32:06
Speaker1: what anyone else says and take the information you want, then you decide what you
32:09
Speaker1: want to do because it's your, it's your life. You've got to, you've got to
32:12
Speaker1: do you. So it's really interesting to hear their, their stories, how they approach
32:16
Speaker1: things in some ways the same, in some ways differently. I mean, I've learned stuff,
32:19
Speaker1: and that's, that's the thing. The more you can talk to people— obviously talking is
32:23
Speaker1: good as part of holistic healing, or it's good for your well-being to talk to
32:25
Speaker1: other people— talking to people who might have similar life experiences who are,
32:30
Speaker1: you know, decent people. I think that's really,
32:33
Speaker1: really supportive, which is, I think, what Shine does really well. It's kind of a
32:36
Speaker1: no-pressure— you can go to the pub or you can go to the conferences or
32:40
Speaker1: camping, whatever it might be. And so to hear how— I mean,
32:44
Speaker1: both Renee and Matt have obviously persevered, as I think anyone who has
32:48
Speaker1: cancer has done, and the things that they've had to do.
32:51
Speaker1: Like, we all have children of various ages, and that adds a
32:55
Speaker1: certain pressure, I don't know, something like that, but also something
32:59
Speaker1: to live through and by, a goal,
33:03
Speaker1: something to aim for. You know, in the darkness, you've got that sort of shining
33:06
Speaker1: light in your family and your children, whatever it might be.
33:10
Speaker1: So yeah, a motive is what I'd say.
33:14
Speaker0: And tell me a bit about your life when you were diagnosed.
33:17
Speaker0: What was happening for you?
33:19
Speaker1: Yes, a little similar
33:21
Speaker1: to both Matt and Renee. A young child, she was Ophelia
33:25
Speaker1: was 1 when I was diagnosed. And so actually,
33:29
Speaker1: we made the decision, slightly different decision earlier, that we wouldn't talk about it
33:32
Speaker1: because she had no— I mean, she wouldn't have understood anything.
33:36
Speaker1: And so we had a young child. I was busy working.
33:40
Speaker1: I'm a headteacher as well.
33:43
Speaker1: And so I was diagnosed finally in the
33:46
Speaker1: summer holidays. Probably everyone remembers Cancer-versary.
33:50
Speaker1: Mine was— In August 2023, uh,
33:53
Speaker1: so out of lockdown and whatnot. Um,
33:57
Speaker1: so life was, life was just, you know,
34:00
Speaker1: busy. We had mortgage to pay, bills to pay. I was still
34:04
Speaker1: relatively fit for someone in their 40s, probably. Uh,
34:08
Speaker1: yeah, happy at work, you know, good stuff going at work,
34:12
Speaker1: you know, things going well with friends and family. And it's just, uh, you know,
34:16
Speaker1: yeah, just A huge challenge and a massive shock when it does
34:19
Speaker1: happen the first time.
34:20
Speaker2: Yeah.
34:21
Speaker0: And so were you getting symptoms
34:24
Speaker0: that you thought it might be bowel cancer, or did
34:28
Speaker0: you think it was something else?
34:30
Speaker1: Yeah, so completely
34:33
Speaker1: differently. I think it's interesting. I think in terms of age, we're very rarely discriminated
34:37
Speaker1: against for being young. I think age discrimination
34:41
Speaker1: tends to be for older people. For me, because I was youngish,
34:46
Speaker1: I think Matt said, which I love being called. That's one bit of the cancer
34:49
Speaker1: journey I like, is being called young all the time. Fantastic. Um, not COVID,
34:53
Speaker1: like, you're young because you bring— I mean, I— Matt probably feels the same— in
34:57
Speaker1: the chemo ward, I probably brought the average age down there by 20, 25 years
35:01
Speaker1: or something like that.
35:01
Speaker3: Mm-hmm.
35:01
Speaker1: So we'd been on holiday and my daughter
35:05
Speaker1: had either— she'd had a tummy bug basically, and I
35:09
Speaker1: got the tummy bug as well, but it hit me really hard. So I didn't
35:11
Speaker1: think anything of it, had a tummy bug. Fine. That was in December.
35:15
Speaker1: In January, February, felt a bit ropey. And in February, I went to my GP
35:19
Speaker1: and I said, look, I'm not feeling right. I've got abdominal pain. And I'd had
35:22
Speaker1: a hernia surgery 4,
35:26
Speaker1: 5 years before. So initial thought was, and actually what I thought
35:30
Speaker1: it was, was the mesh had slipped or something, which does happen. So they ultrasounded
35:34
Speaker1: me, nothing. Went back, they ultrasounded the other side, because the pain was sort of
35:38
Speaker1: moving. I went back. I had iron,
35:43
Speaker1: which of course then made me slightly constipated, possibly masked the symptom.
35:48
Speaker1: I never— you know, if we're giving out sensible medical
35:52
Speaker1: advice, everyone check your poo. You know, as you know, and I was
35:56
Speaker1: obviously doing it. Is there blood? I never got that symptom until after I was
35:59
Speaker1: diagnosed. I had all these kind of— my stomach felt very solid.
36:04
Speaker1: I went to see the GP. Yeah, about 8.
36:07
Speaker1: More, I'd probably go to the GP normally, what, maybe once, twice a year if
36:11
Speaker1: that. I went back, I think, 8 times in about 3, 4 months. It's like,
36:15
Speaker1: I just, I knew, I just kept going back and I kept going back.
36:17
Speaker1: So the advocacy story is, is really important. You know your body.
36:22
Speaker1: Yeah, Renee, uh, postpartum obviously knew her body, knew something wasn't right.
36:26
Speaker3: Mm-hmm.
36:26
Speaker1: Matt obviously had that, you know, slightly shorter period, but he,
36:30
Speaker1: he knew something wasn't right, kept going back, and eventually GP
36:34
Speaker1: referred me to gastro and urology because they literally,
36:37
Speaker1: they didn't know what it was. And then they gave me a FIT test.
36:41
Speaker1: Now, FIT tests cost somewhere between
36:44
Speaker1: £4 to £6 for the NHS to process.
36:48
Speaker1: If I'd have been 10 years older, I'd have been FIT tested at
36:52
Speaker1: the drop of a hat.
36:52
Speaker3: Hmm.
36:53
Speaker1: You know, and I think probably I'm going to
36:54
Speaker1: presuppose that that's something that would have been sensible for
36:58
Speaker1: anyone that is having those kind of symptoms to have. I think have—
37:03
Speaker1: that's a broader conversation, I think. So unfortunately, the NHS is brilliant. I think
37:07
Speaker1: that's another thing to say to anyone listening to this is we can trust the
37:10
Speaker1: NHS. I know people that have gone private and the private consultant just says,
37:14
Speaker1: go here, you'll get better treatment for whatever reason. And I was very lucky.
37:17
Speaker1: UCLH were a fantastic hospital for me. As soon
37:22
Speaker1: as that FIT test came back positive, I was on the rapid pathway, which people
37:26
Speaker1: listening to this will probably be familiar, which is a 2-week pathway where they're going
37:29
Speaker1: to do additional tests within 2 weeks. And I think from the fit test,
37:32
Speaker1: the diagnosis was literally being sat down,
37:36
Speaker1: was, was 2 and a half weeks. And it is,
37:39
Speaker1: I think, the admin side of things which you've got to be on top of,
37:42
Speaker1: and no one really tells you about that. So spreadsheets,
37:46
Speaker1: Matt, we'd be great friends, I tell you. The spreadsheets I had about finances and
37:51
Speaker1: treatments and childcare and work,
37:54
Speaker1: because you've— I've always been a bit of a a hyper-organizer,
37:58
Speaker1: and I think that was one way I really, like, coped with it, was,
38:02
Speaker1: was organizing it, because that was something I could control.
38:05
Speaker1: And I think that helped me. I said, right, here's the treatment schedule,
38:09
Speaker1: here it is. The things you can't control are what
38:13
Speaker1: your reactions are going to be, as Matt and Raina have said, what the reactions
38:16
Speaker1: of other people are going to be. And then moving through that process of telling—
38:20
Speaker1: you've got to tell work, you've got to tell your family, and all those all
38:23
Speaker1: those bits and pieces becomes difficult,
38:26
Speaker1: particularly I think if you've dealt with— you feel a bit let down. I mean,
38:29
Speaker1: one of the questions you're asked, which I think from what Renee said she was
38:33
Speaker1: asked, you know, are you tired? Well, we both had one,
38:36
Speaker1: one-ish, one-year-old, and you're working. Of course
38:41
Speaker1: I'm tired. What a useless question. But I wasn't asked, have you
38:45
Speaker1: lost weight? Now, I don't weigh myself, but I've been about 70 kilos ever,
38:48
Speaker1: fortunately enough, ever since I was the age of about 20. The first
38:52
Speaker1: time they weighed me, I was 67 kilos. And if I'd have weighed myself,
38:54
Speaker1: I'd have gone, hang on, that's not right. And so I
38:58
Speaker1: think trust in yourself, trust that
39:01
Speaker1: you know. That's something I would say to people. You know, if you feel something's
39:05
Speaker1: not right, go back because, you know, the NHS
39:08
Speaker1: is there to support people. If you think you're unwell, you should go
39:13
Speaker1: back and they should listen to you. And if you feel they don't, you know,
39:16
Speaker1: there are other alternatives. Go see a private consultant, um,
39:20
Speaker1: you know, get referred to another hospital, wherever it might be. But then once
39:24
Speaker1: the system started, the Rolls-Royce of medical treatment is what I had,
39:28
Speaker1: quite frankly.
39:28
Speaker0: Oh, I'm really, I'm really, really glad that you had
39:32
Speaker0: that experience. And you touched on
39:35
Speaker0: that thing of control and sort of lack of control,
39:40
Speaker0: and it's And how everyone
39:44
Speaker0: sort of navigates that differently.
39:48
Speaker0: For you, with the spreadsheets and everything, did you find
39:51
Speaker0: that to be useful at that point?
39:54
Speaker1: Yeah,
39:55
Speaker1: because I could map out— My treatment plan,
39:59
Speaker1: I was asked if I'd like to have a trial, and I thought,
40:02
Speaker1: well, you're going to be monitored more, so I went for a trial. I was
40:06
Speaker1: randomized to Fochtrop,
40:09
Speaker1: 3, which is a study about whether it's better to give chemotherapy before
40:13
Speaker1: surgery or not for bowel cancer, which early— the paper suggested it
40:17
Speaker1: is in certain situations. Not in all, obviously, but certain.
40:21
Speaker1: So I then knew, right, 3 lots of chemo,
40:25
Speaker1: then surgery, and then it's up to 9 lots of chemo afterwards.
40:29
Speaker1: Once I knew that, having a treatment plan, I was like, okay, I know the
40:33
Speaker1: plan. Obviously, you've got blood tests, CT scans,
40:37
Speaker1: PET CT scans,
40:38
Speaker1: MRI, cardiograms, all sorts of
40:42
Speaker1: things. I think once I had 9 appointments across 7 clinics in one day or
40:46
Speaker1: something like that. It's a relentless treadmill,
40:51
Speaker1: which is another thing which, particularly if you— and you can't always
40:54
Speaker1: take someone with you, either for lockdown reasons, medical reasons,
40:58
Speaker1: whatever the thing might be. It feels like a relentless process.
41:03
Speaker1: By organizing it and saying, wait, it's step by step. I can't
41:07
Speaker1: solve this. Of course, what you want to do is, I want to solve it
41:10
Speaker1: now. I want to solve it now. Be at the end. That's what I want
41:12
Speaker1: to do because it's better for me. Then you're thinking about, as I know Matt
41:16
Speaker1: and Renee would have done, or anyone else who has had cancer, they are then
41:19
Speaker1: thinking about family and friends,
41:23
Speaker1: obviously, but really family and those who are relying on you. That kept me going
41:27
Speaker1: as well, was if I organized myself, that was something that I could do because
41:31
Speaker1: I knew, you know, after I come home on a Friday night after chemo,
41:36
Speaker1: responsibly, we always organized my partner or
41:41
Speaker1: my partner and someone else to be there because you're physically just not going to
41:44
Speaker1: be able. And of course, the first time you have chemo surgery, you know you're
41:48
Speaker1: going to be weak. And I think obviously people, when they say you must have
41:51
Speaker1: someone to take you home, you don't know how you're going to respond to that
41:54
Speaker1: surgery. You don't know how you're going to respond to chemo or an MRI scan
41:57
Speaker1: or anything like that. And so So if you can plan those things, at least
41:59
Speaker1: it was something I had done that I could then relax a little
42:03
Speaker1: bit. And then you're dealing with the, you know, the mental side
42:07
Speaker1: of things, and people deal with that in different ways through, you know, talk therapies
42:10
Speaker1: or, you know, going to see a, you know, psychiatrist or whatever it
42:14
Speaker1: might be. And again, you do what works for you. Um, the organization
42:18
Speaker1: side of things helped me. But then in terms of the medical information,
42:22
Speaker1: you've got to be an informed optimist, I think is what Matt said.
42:25
Speaker0: Mm-hmm.
42:25
Speaker1: And to his point, I think that's really good. But they gave me Renee
42:29
Speaker1: said about too much information. They gave me this wodge of, um, here's all—
42:33
Speaker1: because I was on 3 drugs— here's all the information about all the drugs you're
42:35
Speaker1: about to have. And I, I, I've, I've got it somewhere in a folder,
42:38
Speaker1: never read it, because I thought the NHS are telling me that's what you're going
42:42
Speaker1: to put in my body, it's the best thing. I think if I start reading
42:45
Speaker1: too much, I'm going to get too into it. So I was good. I think
42:49
Speaker1: the forums are fantastic, as Renee said, but for your actual medical,
42:53
Speaker1: solid medical advice, I only went to NHS, Macmillan, those sorts
42:57
Speaker1: of things. So you've got to Get your sources of information,
43:01
Speaker1: percolate it, crystallize it into something that you can then cope with,
43:04
Speaker1: because that's what's going to help you, I think. Some people want to read all
43:07
Speaker1: the literature, and some people want to read less than me. Again, it's what
43:11
Speaker1: works for people, as long as you are—
43:15
Speaker1: you should always listen to medical advice. I think that's the thing.
43:19
Speaker0: I have photos of my cancer admin, so I am very familiar.
43:23
Speaker0: I did not look through any of it, and there could have
43:27
Speaker0: been amazing things in there, right? Could have been really
43:30
Speaker0: good resources or tips or— That acknowledgement
43:34
Speaker0: of overwhelm. But there was also something else that,
43:38
Speaker0: with your scheduling, that I really liked, because I always think— I'm
43:42
Speaker0: not a spreadsheet person. I've said this on the podcast a few times.
43:45
Speaker0: I'm in full support of spreadsheet people. I'm not
43:49
Speaker0: one, but I sort of imagine spreadsheet people as being incredibly
43:53
Speaker0: productive and they just keep going and going. And so
43:57
Speaker0: I see a spreadsheet and I'm like, oh, I'm not going to be able to
43:59
Speaker0: do anything. But what you managed to do was compassionate
44:03
Speaker0: scheduling, right? So it was, I don't know how
44:07
Speaker0: I'm gonna feel, so let's put some things in place that would be supportive,
44:12
Speaker0: right? You weren't scheduling, like, as if you were gonna keep going
44:16
Speaker0: and going and going. You were like, okay, Friday night,
44:19
Speaker0: I don't know how I'm gonna feel. And that's the thing about
44:22
Speaker0: chemo is even talking to the
44:26
Speaker0: doctors, They might not have as many patients in
44:30
Speaker0: your age range. So how you might feel might be different to
44:34
Speaker0: someone older. But then, you know, from one person to another,
44:37
Speaker0: there can be, you know, one person can go for a run in the morning,
44:40
Speaker0: and the other person's like crying because they're like, I can't get out of bed.
44:44
Speaker3: Right.
44:45
Speaker0: Like, there's such, such a big difference. But what you
44:48
Speaker0: were doing was really holding that uncertainty
44:52
Speaker0: in a way.
44:52
Speaker1: Yeah, I thought— I think I sort of tried to, tried to
44:56
Speaker1: own it. And as it goes, like, it was the Friday that was poor for
44:59
Speaker1: me, but the weekend after chemo I could do stuff. I was, I was lucky.
45:03
Speaker1: Um, God, it used to take me ages to get out of bed though.
45:06
Speaker1: I don't know, I don't know, it just used to take me absolutely ages.
45:08
Speaker1: I don't know if I felt weak or psychological, whatever it might be.
45:12
Speaker1: And just a funny thing that, you know, one of the other things they ask
45:15
Speaker1: me is, oh, has your appetite been affected? And probably looking back it had,
45:17
Speaker1: but not wanting to eat post-KIP. That to me was so strange
45:21
Speaker1: because I like my food, I like to eat, I like to cook, but not
45:26
Speaker1: wanting to eat was such a strange sensation to me. It just felt
45:30
Speaker1: so unnatural. Yeah, and I think it's
45:33
Speaker1: whoever you've got around you. You know, in modern world, you may not have family
45:37
Speaker1: immediately around me. I did. People traveled in, both my immediate
45:41
Speaker1: family and my partner's immediate family as well, but also friends would help out.
45:45
Speaker1: And there's different ways of supporting as well, and people do different things. So I
45:49
Speaker1: very, I very quickly named my tumor Grendel.
45:53
Speaker0: Grendel?
45:54
Speaker1: Grendel, which is, um,
45:56
Speaker1: the, the monster in Beowulf.
45:59
Speaker0: I knew
46:00
Speaker0: it sounded familiar, but I did not know where that was from.
46:02
Speaker1: I went for
46:03
Speaker1: a walk and I was— anyway, so there's a playlist on my Spotify which myself
46:08
Speaker1: and my very good friends from Suffolk, uh, Andy, Dave, and Gav, it's called Killing
46:11
Speaker1: Grendel. And it's, it's a, it's a, it— I listen back
46:15
Speaker1: to it now and it's basically an chronological order, the songs they fed into it.
46:19
Speaker1: And so there are ways— and so there's ways of feeling close, you know,
46:22
Speaker1: obviously through Zoom or Teams or whatever, you know, video calling
46:26
Speaker1: and messaging. And I think that's one thing the modern world— the internet's
46:30
Speaker1: got some things that I think are less savoury, but actually, you know, forums,
46:33
Speaker1: which Renee has mentioned, being able to speak to people or share music,
46:37
Speaker1: whatever it might be, there are other ways that people can give support in a
46:40
Speaker1: slightly more distance and remote, you know,
46:44
Speaker1: having medical appointments, phone appointments, you know,
46:48
Speaker1: being able to see a psychiatrist on the video or phone. You know,
46:51
Speaker1: 20 years ago, that's impossible. So actually, there is now additional
46:55
Speaker1: different kinds of support up there, although we all know face-to-face chat
46:59
Speaker1: is better than screen chat, and screen chat is in some ways better than just
47:04
Speaker1: voice chat.
47:04
Speaker0: If you're stuck in a hospital, it's better to be able to have
47:07
Speaker0: some way of connecting, isn't it,
47:11
Speaker0: than not? And, you know, we've definitely had people come to us
47:15
Speaker0: our programmes, you know, joining from hospital
47:18
Speaker0: beds, and at times where they couldn't
47:21
Speaker0: go out, and like, to be able to still have that connection.
47:25
Speaker0: And something that someone said on a previous podcast about
47:29
Speaker0: uncertainty, they said, we think of the opposite of uncertainty
47:34
Speaker0: as being control, when the opposite of uncertainty is connection.
47:39
Speaker0: And that took me a second to kind of really sit with.
47:42
Speaker0: But I suppose, In a way, uncertainty is
47:46
Speaker0: so terrifying at its core,
47:50
Speaker0: and connection can only happen when
47:54
Speaker0: we're safe, really.
47:56
Speaker1: I think so. I think so. Matt made a really
47:58
Speaker1: good point, um, you know, the fact that he had to do some of those
48:01
Speaker1: things, you know, alone, appointments. And obviously there's certain ones you have to,
48:05
Speaker1: and sometimes having someone with you, yeah, I don't really feel like talking,
48:08
Speaker1: but actually It's when sometimes
48:12
Speaker1: I probably did exactly the same as Matt and very broad brushstroke.
48:15
Speaker1: Maybe it's a male thing. We're less good at talking about medical issues.
48:19
Speaker1: I was possibly being overoptimistic, you know, sort of blitz through
48:23
Speaker1: it. You know, come on, chaps, let's try and smash this thing. And actually,
48:26
Speaker1: my name is Sharita. You know, she obviously came with me to multiple appointments and
48:29
Speaker1: multiple chemos, and she actually was saying, you know, maybe you do need
48:33
Speaker1: to think about this. And actually, sometimes that sage advice to just think about just
48:37
Speaker1: Just take another look. Fine if you want to deal with this, but actually,
48:40
Speaker1: are you thinking about how you feel in that way? And it's,
48:43
Speaker1: it's good to have those other voices. It's very difficult to
48:47
Speaker1: go through something just by yourself, particularly when it is,
48:50
Speaker1: you know, something which changes your world perspective, you know.
48:54
Speaker1: Yeah, sometimes, sometimes for the better, you know. It certainly makes probably
48:58
Speaker1: everyone reevaluate what their priorities are in life.
49:00
Speaker0: Yeah, and kind
49:02
Speaker0: of thinking about, um, Matt's confidence jacket, There is
49:05
Speaker0: something about kind of the splintering that can
49:08
Speaker0: happen as you're trying to get through something, right? You have
49:11
Speaker0: to put on this hat. Okay, I'm going in to
49:15
Speaker0: see this person. I've got this hat, I've got these practicalities, I've got
49:19
Speaker0: this, you know. But actually, like, where's all the other parts of your
49:22
Speaker0: personality? Like, are they having a place?
49:26
Speaker0: And is there a place where you're like, I'm not confident
49:29
Speaker0: Matt today, like, can actually come out and be
49:33
Speaker0: heard over a pint, you know? Do you have that now,
49:36
Speaker0: Matt?
49:37
Speaker3: Yeah, I do, but it's not always from where you think
49:40
Speaker3: it is from, you know. And actually, because I think you're very protective—
49:44
Speaker3: I, I— of my family, my loved ones, I can
49:48
Speaker3: be entirely honest with my wife. But sometimes when I'm
49:52
Speaker3: retelling what I want to tell my wife or my kids to a mate,
49:55
Speaker3: suddenly you feel like you can say it more casually or with less weight.
50:00
Speaker0: Mm-hmm.
50:01
Speaker3: Before you then edit what you choose to say
50:03
Speaker3: to someone closer to you. And I think that's
50:08
Speaker3: okay. You shouldn't sort of criticize that. You are trying to protect people.
50:13
Speaker3: And so actually where you can be your full self maybe sometimes
50:17
Speaker3: is from entirely an external source. The first connection I
50:22
Speaker3: had with Shine was when you restarted Shine Max, a 2-day session
50:27
Speaker3: up in a country house. And we all had different stories,
50:30
Speaker3: but we could all be our unedited self because
50:34
Speaker3: we didn't really know each other so much to sort of go, oh,
50:38
Speaker3: I don't want to say this to you because... And through
50:42
Speaker3: my 5, 6 years with bowel cancer so far,
50:47
Speaker3: there's plenty of times where we've decided to hold
50:50
Speaker3: off to information with, say, not sharing with my parents,
50:55
Speaker3: partly to protect them, but also partly Knowing the response that
50:59
Speaker3: that could incur back from them, like, no, I can't
51:03
Speaker3: deal with that quite now. And that's okay, because you can't be responsible
51:06
Speaker3: for how other people are gonna come
51:10
Speaker3: back. And that's why it is better sometimes to have other people
51:14
Speaker3: that you can just completely say everything and
51:18
Speaker3: touch onto the darker conversations that someone else— that
51:22
Speaker3: you are thinking about. You have to think about this.
51:25
Speaker3: And getting someone that goes, well, this is a way to deal with it,
51:28
Speaker3: because they care, but they're not so
51:32
Speaker3: invested that you don't feel that you can tell them stuff.
51:35
Speaker0: I feel for
51:36
Speaker0: someone listening to this, that there's so many
51:39
Speaker0: takeaways, really finding that kind of what
51:43
Speaker0: you were saying, Chris, there's lots of ways to, you know,
51:47
Speaker0: be a parent, but actually, you know, you find your own way,
51:51
Speaker0: you know, and you find your own style. But there's some
51:54
Speaker0: commonality talking to other people. There's some points of reference,
51:59
Speaker0: and that it's okay to be different, but it's also okay
52:03
Speaker0: just to, like, check in with how other people are dealing
52:07
Speaker0: with chemo, or dealing with, you know, the admin, or dealing with
52:11
Speaker0: that kind of drain, or dealing with taking off the jacket,
52:15
Speaker0: or dealing with it, like, just, oh, I want a night off,
52:18
Speaker0: you know? I just want to be myself, be a bit lighter. I just
52:22
Speaker0: don't want to think as much. Or, you know, actually, I'd love to go go
52:25
Speaker0: for 2 days away with a bunch of other younger people
52:29
Speaker0: with cancer, and just connect in this very, very different
52:33
Speaker0: way, or I want to join online on a program,
52:37
Speaker0: or whatever it is, that there is points
52:41
Speaker0: of access and connection. And it might be with other people with cancer. And all
52:45
Speaker0: of you have mentioned also other people with a similar cancer
52:50
Speaker0: as well. is also incredibly useful.
52:54
Speaker0: And whether you are a scheduler or not, kind of doing it in
52:57
Speaker0: like this really— I love that. Like, oh, I don't know how I'm going to
53:01
Speaker0: feel on Friday night. Let's put something in, you know, that supports
53:06
Speaker0: that. Love that. Thank you so much. Renee had to
53:10
Speaker0: go, but it's been really fabulous having you all on the
53:14
Speaker0: podcast. I'd love to have you back. Thank you so much,
53:18
Speaker0: Matt and Chris, for being here. And I know, Chris, you're going to do
53:22
Speaker0: some running for Shine.
53:24
Speaker1: Yeah, thanks for the plug.
53:25
Speaker1: I've never run competitively. Does parkrun count? I don't know. I've never run competitively.
53:28
Speaker1: To me, I used to be very fit. I, um,
53:33
Speaker1: but I'd become, you know, a parent and then, you know, you know, getting cancer,
53:37
Speaker1: and I was still able to run occasionally between chemos. Um, after surgery, obviously I
53:40
Speaker1: couldn't. So I've been, yeah, I've been running. I'm training for the Vitality 10K
53:44
Speaker1: in London in September, raising money for Shine.
53:48
Speaker1: Um, but everyone's been so generous that I've, I've upped my target from—
53:52
Speaker1: it was 3 and now it's 5.
53:53
Speaker0: Amazing.
53:54
Speaker1: And I'm sort of creeping up.
53:55
Speaker1: So, and it's, it's such a good cause. And of course it's not one of
53:58
Speaker1: the larger charities, and actually it is about— it is effectively
54:02
Speaker1: about holistic healing because it's about people coming together. There's no research element to it,
54:06
Speaker1: so it's a very sort of specific charity. And also I think it's,
54:10
Speaker1: it's giving back, isn't it? Because Shine's done so much for me,
54:13
Speaker1: you know, where they have supported me, given me access to whether it's
54:18
Speaker1: forums or things and events. So it just felt right to then give something back,
54:21
Speaker1: particularly when I think of, you know, the people I've met. As Matt,
54:24
Speaker1: you know, says, he's— I think he said he's an admin on a forum.
54:27
Speaker1: Anything you can then give back to that community where people are uncertain.
54:30
Speaker1: I, I am, yes, I'm running. So if anyone wants to find my JustGiving page
54:34
Speaker1: and you've got a pound to spare, um, what I need
54:38
Speaker1: is a social media influencer to pick it up. Um, I've been tagging various companies.
54:42
Speaker1: I tagged Andy Burnham. Andy, if you're listening, thanks for chatting about young people
54:46
Speaker1: with cancer. Go big or go home. I did tag you in on the Queen
54:49
Speaker1: Elizabeth Tower, @AndyBurnham. No contact yet, unfortunately.
54:52
Speaker0: Well,
54:53
Speaker0: hopefully that will come through. Well, we very much appreciate it.
54:57
Speaker0: Shine is a tiny charity. There's 10 of us,
55:00
Speaker0: and not even all of that 10 are full-time, if that gives you any idea
55:04
Speaker0: of just how tiny it is. But there is so much
55:08
Speaker0: that comes out of this very, very small team. So everyone's very appreciative,
55:13
Speaker0: and I'm very appreciative both of you for
55:18
Speaker0: being here today and sharing. And to everybody listening,
55:21
Speaker0: thank you so much. And if you want to support Shine,
55:25
Speaker0: head over to the Shine website.
55:28
Speaker0: There's a donate button on there. And head
55:32
Speaker0: over to our social media. You will see Chris probably tagging
55:35
Speaker0: everybody else on there. Thank you so much to Radio
55:39
Speaker0: Facilities. We couldn't do this They sponsor
55:43
Speaker0: our podcast, and we are incredibly grateful to them too.
55:46
Speaker0: Till next time, bye!
55:49
Speaker3: Bye!
55:50
Speaker2: Bye!
55:50
Speaker0: This is not your grandma's cancer show.
55:54
Speaker1: Not your grandma's cancer show.