Latest / Tom's Hirschsprung's Podcast / Episode 51 - With Fred Gray

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Episode 51 - With Fred Gray · Tom's Hirschsprung's Podcast

0:05
Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
0:08
Speaker 1: a look into the remarkable experiences of the most inspiring
0:11
Speaker 1: people around Hirshprung's disease and sports.
0:38
Speaker 2: Hello and welcome to episode fifty one of Tom's Hirshbrung's Podcast.
0:44
Speaker 2: I have a very special one for you today, especially
0:47
Speaker 2: to me. Me and my guests share something very very
0:52
Speaker 2: important in common, apart from having Hirshbrung's disease obviously, but
0:57
Speaker 2: I'm joined by actor and director and Rather alumni Fred Gray.
1:02
Speaker 3: Welcome, Fred, Hello, Hello, very very excited to be here.
1:06
Speaker 3: We were talking same yes before before we came on
1:10
Speaker 3: that I've never met anyone aside from my family Who've
1:14
Speaker 3: got who's got hersbruns. It's it's a hugely exciting day
1:19
Speaker 3: for me.
1:19
Speaker 2: So say so it's you. You're in exactly the same
1:23
Speaker 2: position as I was in a year ago, having met
1:27
Speaker 2: nobody else with hirsh Sprugs. I thought, well, I'll start
1:31
Speaker 2: a podcast about saying to me.
1:32
Speaker 3: Want to start a podcast? I wanna lead you to them.
1:34
Speaker 3: I feel like I want to rival you and meet
1:36
Speaker 3: as many hirs Sprungs survivors as possible. That would be,
1:40
Speaker 3: you know, fun, but I won't do that. It's your thing.
1:42
Speaker 2: You can't call it Tom's Hirshprung's podcast. That's the only rule.
1:45
Speaker 3: It was trademarked. But two thought.
1:51
Speaker 2: It is an enormous pleasure to have you on because,
1:56
Speaker 2: as we mentioned, and for anybody that has listened to
2:00
Speaker 2: your wife Jamie's episode, which has gone out a few
2:04
Speaker 2: weeks ago, they will know that we share something very
2:09
Speaker 2: very important in common apart from having hirshbruns to seat,
2:12
Speaker 2: but we'll leave that a little bit later on. Would
2:16
Speaker 2: she like to start with with.
2:19
Speaker 4: Exactly, build a little suspense, build a little drama. You'll
2:24
Speaker 4: know that being an act, I've a bill.
2:27
Speaker 3: Mix of the trade.
2:28
Speaker 5: I's just really enjoyed it, Carrier, So let's start with
2:34
Speaker 5: your story because you are total colonic hirshbruns diagnosed from birth,
2:42
Speaker 5: but you also have a family connection with with hirshbruns.
2:47
Speaker 2: Your dad has hirshbuns as well. Would you like to
2:50
Speaker 2: talk a little bit about diagnosis?
2:53
Speaker 3: Absolutely. I think one thing that will come become clear
2:56
Speaker 3: over the next forty five minutes is that I actually
2:59
Speaker 3: don't know a lot like medically, I don't really know
3:03
Speaker 3: what like I've got stuff missing inside. I don't really
3:07
Speaker 3: know what's missing, Like I don't really know. In fact,
3:10
Speaker 3: when I was when I was eight, I found out
3:13
Speaker 3: a in a consultation like a check up a Great
3:15
Speaker 3: Woman Street, and my mother found out that I had
3:18
Speaker 3: one kidney. I hadn't found out until I was eight,
3:22
Speaker 3: and I remember my mom being like furious that she
3:25
Speaker 3: didn't know that, and I was like, oh, that's cool,
3:26
Speaker 3: I've got one kidding so I've got like things missing,
3:29
Speaker 3: and I'd like, I don't really know. So there are holes.
3:32
Speaker 3: There are holes in my knowledge. But I know that
3:34
Speaker 3: my my dad has hushbrngs, and obviously I have hirshbrngs,
3:40
Speaker 3: and my son now has hushbrongs. So there's a sort
3:44
Speaker 3: of a three line generational connection. And when I was
3:49
Speaker 3: in Great Machine and explained this, they said, that's incredibly rare.
3:52
Speaker 3: It's not supposed to be hereditary. It's yeah, like even now,
3:57
Speaker 3: I'm like, is that the right word? So yeah, I
3:59
Speaker 3: don't it's not supposed to pass down like that's they
4:02
Speaker 3: were incredibly fascinated by that. My dad's, as far as
4:06
Speaker 3: I understand it, his hirshbrum's wasn't as severe as mine.
4:12
Speaker 3: Maybe it was a short section, but obviously the medical
4:17
Speaker 3: research into it was less so as they didn't know
4:21
Speaker 3: as much about it, and obviously before before my dad's generation,
4:25
Speaker 3: people would just die from it, so you know, so then, yeah,
4:30
Speaker 3: so my dad was had it and that was incredibly
4:33
Speaker 3: useful for me growing up, and hopefully that will be
4:37
Speaker 3: the same for Dylan, my son, who has it. In
4:40
Speaker 3: a way that when you have a parent who has
4:43
Speaker 3: experience life lived experience of it, it just frames everything
4:47
Speaker 3: for you. So I never felt I felt looked after
4:52
Speaker 3: and cared for, But I never felt like I was disabled.
4:58
Speaker 3: If that's like, I never felt that way that would
5:01
Speaker 3: give myself that label. Not there's anything obviously, of course
5:03
Speaker 3: wrong with being. In fact, since since Dylan, I've started
5:06
Speaker 3: using disabled toilets because I'm like, I need this. Why
5:10
Speaker 3: have I never Yeah, it made me thirty odd years
5:13
Speaker 3: to do that. It's you know, it's silly. But I
5:17
Speaker 3: never felt I felt like it was a power. I
5:20
Speaker 3: felt like I'd survived something, and there was a sort
5:24
Speaker 3: of a resilience and a thing that I sort of
5:28
Speaker 3: displayed at a really young age. I was in great
5:30
Speaker 3: mustry for two years. Basically I had multiple operations. I
5:37
Speaker 3: misses my dad before the podcast is at how many
5:39
Speaker 3: operations I had? And he said three. Now I thought
5:42
Speaker 3: it was more than that, but it's three very serious operations.
5:48
Speaker 3: And he said that there was one where they offered
5:51
Speaker 3: me an emergency christening. There was like a twenty percent
5:53
Speaker 3: chances of survival and it didn't look good. And the
5:57
Speaker 3: reason why there was only three is because I was
6:00
Speaker 3: constantly unwell. Like I was constantly not well enough to
6:03
Speaker 3: be operated on. So it's infections and there was like
6:06
Speaker 3: all sorts going on. I was called Spike in hospital.
6:09
Speaker 3: That was my nickname. My hair just spiked up. And yeah,
6:16
Speaker 3: so two years and then obviously went back in so
6:19
Speaker 3: when I left, I would then go have to go
6:20
Speaker 3: back every two weeks, then every month, and every two
6:22
Speaker 3: months and every three months, and eventually discharged when I
6:25
Speaker 3: was sixteen, and then obviously lived my life. It's like
6:31
Speaker 3: I remember having a really normal childhood. I remember that
6:37
Speaker 3: my my my bottom was often sore from the sea
6:41
Speaker 3: or you know, staying in wet swimming drunks was no good.
6:46
Speaker 3: I think from the ages of between four and six. Again,
6:51
Speaker 3: this is just a guess. I could only eat boiled
6:55
Speaker 3: chicken and boiled potatoes for I think was a year.
7:01
Speaker 3: But I could only have only have those two things
7:03
Speaker 3: because anything my body could digest, and apparently I was
7:06
Speaker 3: well up for it every time. At the din of time,
7:10
Speaker 3: I was just like more and they were like what
7:11
Speaker 3: is roll? They were like, jazz it up? You know,
7:14
Speaker 3: They're try and do different things with those two things.
7:16
Speaker 3: And every now and again I might get a bit
7:18
Speaker 3: of gravy or whatever. But it was it was boiled
7:20
Speaker 3: chicken and boiled potatoes, and I still love both those things.
7:22
Speaker 3: You think by now i'd be like, Okay, I'm gonna
7:24
Speaker 3: move on to other things, but absolutely love chicken and potatoes.
7:26
Speaker 3: Love it so like little things like that. I remember
7:31
Speaker 3: being very embarrassed about my body growing up as a teenager.
7:35
Speaker 3: I remember like going going swimming or going on family
7:38
Speaker 3: with holiday with my family, I would i would have
7:40
Speaker 3: my arms crossed across my stomach because I've got a
7:42
Speaker 3: big scar across They used to say it was from
7:44
Speaker 3: a shark attack, and you know, just make things, but
7:48
Speaker 3: just constantly like really embarrassed by that. And and that
7:54
Speaker 3: is something that I wish I didn't waste time on
7:56
Speaker 3: because it was It's again, it's just your scars are
8:01
Speaker 3: souvenirs you never lose, and I just think that was
8:03
Speaker 3: a souvenir of the fact that I went through some stuff,
8:06
Speaker 3: obviously unaware of it at the time. I don't remember
8:08
Speaker 3: anything from hospital. And this is also the thing going
8:10
Speaker 3: going moving on to dinner a little bit, is that
8:12
Speaker 3: when we were in hospital, I don't want to go
8:14
Speaker 3: over the same ground that Jamie did when she was on.
8:16
Speaker 3: I thought it was an incredible it was so I
8:18
Speaker 3: found it really moving listening listening to it obviously, is
8:23
Speaker 3: that Jamie would want worry about Dylan obviously growing up
8:28
Speaker 3: with Hushberer, especially early days before, he's just like, he's
8:32
Speaker 3: just incredible right now in terms of when he got it,
8:36
Speaker 3: I thought, okay, so I was in for two years,
8:38
Speaker 3: maybe it's a bit better now. So maybe looking at
8:40
Speaker 3: like a year year and a half, he'll be in
8:41
Speaker 3: hospital and then we'll sort of do the thing chicken potatoes,
8:46
Speaker 3: We'll go through the motions and I'll know what that
8:48
Speaker 3: is and be fine. And it wasn't like that at all.
8:51
Speaker 3: You know, he was in He was in for maybe
8:53
Speaker 3: four or five months in total, and he was in
8:54
Speaker 3: he was. He was in there for four for like
8:57
Speaker 3: a month, five weeks, then he came out and had
8:59
Speaker 3: to go back he again. Jamie explained all this in
9:01
Speaker 3: the other in the other podcast, but it was nowhere
9:03
Speaker 3: near the two years. It was no in it. And
9:05
Speaker 3: also his scar is nowhere nothing like mine. But it's
9:08
Speaker 3: also in the event that he was it was going
9:11
Speaker 3: to be exactly the same in the same way my
9:13
Speaker 3: parents did for me. It's all about how you frame
9:15
Speaker 3: these things. And I never I never felt, as I said,
9:20
Speaker 3: I never felt different. I never felt like I had
9:22
Speaker 3: something to be Obviously, the teenage thing takes over, yeah,
9:27
Speaker 3: and that's the thing, but I I want for a
9:30
Speaker 3: very early age. I'm I'm I'm getting Dylan too. We're
9:33
Speaker 3: getting Dylan to celebrate this thing. And I remember when
9:36
Speaker 3: he started to put thoughts together. There was one time
9:40
Speaker 3: where he was in the he was in the shower
9:43
Speaker 3: with with me. It was just sort of standing in
9:45
Speaker 3: front of me and showering, and it was just when
9:47
Speaker 3: he was starting to say some thoughts like Daddy, I'm
9:50
Speaker 3: hungry or can I have some dinner? And out of
9:53
Speaker 3: absolutely nowhere, he just said daddy, And I was like, yes,
9:56
Speaker 3: he said, I love my scar, and I was like, oh,
10:01
Speaker 3: oh my god, that's and this is from like he
10:05
Speaker 3: was maybe one and a half two at the time,
10:07
Speaker 3: and I was like, it just absolutely blew my mind
10:11
Speaker 3: that that was one of the first thoughts that he
10:13
Speaker 3: was able to put together, and and that that and
10:16
Speaker 3: that has and has seen it, seen seen him through.
10:18
Speaker 3: It's just that he's such got such a wonderfully positive
10:22
Speaker 3: attitude and out look. And also his scar is tiny
10:25
Speaker 3: compared to mine. And remember Jamie telling you the story
10:27
Speaker 3: about mister the copy. I asked if it's going to
10:30
Speaker 3: look like this, and I lifted up my top and
10:32
Speaker 3: he was like, that's this little tiny thing above the pantline,
10:38
Speaker 3: below the pant line, which is important and stuff. Yeah.
10:43
Speaker 3: So so yeah, the three generational thing was was mad.
10:47
Speaker 2: And also the.
10:50
Speaker 3: What was really strange and hard about the whole experience
10:54
Speaker 3: was obviously me and Jamie were in it together, as
10:57
Speaker 3: we always are, but my experience of it was being home.
11:01
Speaker 3: It was in great Ormond Street. I knew exactly what
11:04
Speaker 3: the beeping and the wires and the tubes and the
11:07
Speaker 3: operations and all of it was kind of second nature,
11:10
Speaker 3: and it was obviously my son, my firstborn son, which
11:14
Speaker 3: is obviously this whole new world that you enter into,
11:18
Speaker 3: but all of that stuff was just sort of second nature,
11:21
Speaker 3: Whereas obviously for Jamie it was incredible, what is all this?
11:25
Speaker 3: What is this world? But on on for me, I
11:30
Speaker 3: was kind of experiencing on a lesser degree, because I
11:33
Speaker 3: don't think Dylan's was ever as serious as it was
11:36
Speaker 3: for me when I when I had those emergency operations,
11:39
Speaker 3: was never a situation where where Dylan had a twenty
11:41
Speaker 3: percent chance to survivor or anything like that. But it's
11:44
Speaker 3: it's still incredibly scary, is that I was experiencing on
11:49
Speaker 3: a on a lesser level what my parents did with me.
11:53
Speaker 3: And that's like, that's that when I started to put
11:58
Speaker 3: that together, it was like it absolutely blew my mind
12:02
Speaker 3: that I was having this this experience, and my mom
12:05
Speaker 3: and dad were at the phone the end of the
12:07
Speaker 3: end of the phone, at the end of each day.
12:08
Speaker 3: And actually my when when we left after four weeks,
12:12
Speaker 3: my mom and dad came and visited him and met him,
12:17
Speaker 3: and then a week after that, my mom died, just
12:21
Speaker 3: out of nowhere. It took us all by surprise, and
12:24
Speaker 3: I like to think that that was my mom. My
12:27
Speaker 3: mom was always going to die, but that she she
12:31
Speaker 3: was waiting until Dylan, her grandson, was at home safe
12:35
Speaker 3: and well, I mean he wasn't well yet, but safe
12:37
Speaker 3: with us, and then she could could go. I firmly,
12:42
Speaker 3: firmly believed that. But to have that, to have that experience,
12:46
Speaker 3: that sort of circle of life thing was and it
12:50
Speaker 3: made me appreciate what they did for me even more
12:53
Speaker 3: about like my mom and dad in terms of what
12:56
Speaker 3: it does to you and I. I and obviously my
12:58
Speaker 3: dad had the advantage that I had, which is that
13:01
Speaker 3: he had experienced it and he was able to feed
13:02
Speaker 3: that in and et cetera, et cetera. But but for
13:06
Speaker 3: Jamie it was horrible. I mean, obviously it was horrible
13:11
Speaker 3: for both of us. And Jane we really talked about
13:13
Speaker 3: her experience of it. Yeah, but to have the experience
13:16
Speaker 3: that my parents had was something I can't really put
13:19
Speaker 3: into words about the sense of gratitude it gives. It
13:22
Speaker 3: gives you for what your parents give you.
13:25
Speaker 2: Yeah, I think that's that's incredibly important. And I doing
13:32
Speaker 2: this podcast, I think has made me really appreciate what
13:35
Speaker 2: my parents did for me too. And I know we
13:39
Speaker 2: were talking a little bit off camera as well about
13:43
Speaker 2: how much we knew about hirshprung's sort of I'm not
13:48
Speaker 2: certainly how much I knew about hirshprungs before starting this podcast,
13:51
Speaker 2: and it was now I think about it, next to
13:54
Speaker 2: nothing and not knowing, not knowing a great deal. And
13:58
Speaker 2: it's really given me a massive appreciation as to what
14:03
Speaker 2: all parents have gone through. I mean, I speak to
14:07
Speaker 2: you know, all manner of people on this show, and
14:10
Speaker 2: a lot of people are are parents of children who
14:13
Speaker 2: have hirshprungs, some of which have hirshprungs themselves, like you.
14:18
Speaker 2: And it just gives me a massive appreciation of what
14:21
Speaker 2: my parents did for me and how worried they must
14:25
Speaker 2: have been as well at the time.
14:28
Speaker 4: And I think it's important.
14:30
Speaker 3: And also the sort of community that you get in
14:34
Speaker 3: greatwn Street or hospitals in general, just sort of life
14:38
Speaker 3: affirming and meet like the awareness of mortality thing that
14:44
Speaker 3: binds people, and there's just there's just kindness. There's just
14:47
Speaker 3: so much kindness, and it's it's it's the kindness that
14:51
Speaker 3: breaks me. Actually, the sort of the trauma and the
14:53
Speaker 3: emergencies of the operations and the beeping the blood and
14:56
Speaker 3: the thing that like, all of that's kind of like
14:58
Speaker 3: you go into sort of survival mode and you're on
15:00
Speaker 3: top of it when someone cuts through that and looks
15:04
Speaker 3: at you and says, are you okay? I'm like, okay,
15:06
Speaker 3: don't stop that. Stop that? Do you need to stop?
15:10
Speaker 3: It's and you get that so much of the vending machines,
15:13
Speaker 3: you know, going down and getting some tomato soup from
15:15
Speaker 3: the vending machines at one in the morning or whatever,
15:18
Speaker 3: and and you meet another parent that's there and you
15:22
Speaker 3: talk about your experience and that you know, I've got
15:24
Speaker 3: harshbrook your son's got Harshbrungs, but their son has a
15:28
Speaker 3: a like something neurological or like yeah, it's just it
15:33
Speaker 3: just blows my mind. When I walk into that building,
15:36
Speaker 3: I feel I feel just sort of like there's just
15:38
Speaker 3: a hug there because there's so much there's so much
15:41
Speaker 3: stuff going on, it just strips away all the nonsense,
15:44
Speaker 3: you know, and then you step out into the street
15:46
Speaker 3: and it's people shouting and cyclists and spitting or being
15:50
Speaker 3: rude or like just being lost in their phone or
15:52
Speaker 3: just there's no sort of like humanity. I don't know,
15:56
Speaker 3: I don't Wally get on another day.
15:57
Speaker 2: I I know what you need.
15:58
Speaker 3: Yeah, there's just some thing that binds when you when
16:01
Speaker 3: you're in that sort of situation that nothing really matters,
16:05
Speaker 3: just nothing, nothing matters. It's just like and also the
16:10
Speaker 3: first son thing, the first child thing, obviously him being sick.
16:14
Speaker 3: I've never had a child that hasn't been sick. And
16:17
Speaker 3: I don't know if I will again or we will again.
16:21
Speaker 3: But how much your your love is fast tracked by
16:25
Speaker 3: your child being unwell is insane. And it's it's like
16:30
Speaker 3: obviously it's genetic and DNA and but it's like, okay,
16:36
Speaker 3: he needs to be better. But the person you've never
16:40
Speaker 3: met before then becomes the center of everything, like nothing
16:45
Speaker 3: else matters. In a second, it's just like wow, and
16:48
Speaker 3: then yeah, it's it's something I can't I can't explain,
16:51
Speaker 3: and I like, I'm sure it's I'm sure it's that
16:53
Speaker 3: way for any parent whose child is also healthy. You know,
16:57
Speaker 3: love just to media, but I've never experienced that. All
16:59
Speaker 3: I can expels aerience is what it felt like to
17:01
Speaker 3: be told, because Jamie obviously was. It was during COVID,
17:04
Speaker 3: she was by herself, and I remember getting that call
17:06
Speaker 3: in the morning, saying he needs to come in. He's
17:07
Speaker 3: been transferred. He's not putting it. He's been transferred to
17:11
Speaker 3: to Nicou. And I remember driving in the car with
17:14
Speaker 3: with Jamie's mom, Kate. It's been amazing through all of this,
17:19
Speaker 3: and and just again going through that, okay two years
17:22
Speaker 3: and trying to just sort of process that immediately then
17:24
Speaker 3: and then walking in and seeing him in that, in
17:27
Speaker 3: that little incubator with all the stuff like this helpless too,
17:31
Speaker 3: like one day old, two day old little thing, and
17:34
Speaker 3: you're like, okay, I need to do everything everything and
17:38
Speaker 3: least do everything to protect to make it, to make
17:40
Speaker 3: him better. And now it's it's like he's never he's
17:44
Speaker 3: never had it. He's potty train and he's like he's
17:48
Speaker 3: just it's just insane. And he can eat anything, you know,
17:51
Speaker 3: like you know my chicken and potato thing nowhere near it,
17:55
Speaker 3: just nowhere near it. He eats everything. And now you
17:57
Speaker 3: go to the nursery's like he had finished all his
18:00
Speaker 3: dinner and he finished someone else's today. And that's that's
18:05
Speaker 3: the same way, same way with me as well. Yeah,
18:09
Speaker 3: that that is brilliant.
18:11
Speaker 2: I take that point as well, because having spoken to
18:14
Speaker 2: people in the field of Hirshbrungs.
18:17
Speaker 3: You know.
18:18
Speaker 2: I mean, I never, you know, give medical advice on here,
18:21
Speaker 2: because I'm I wouldn't know what to do or to say.
18:25
Speaker 2: But a lot of people that I've spoken to within
18:27
Speaker 2: the medical field, and some that I've had on this
18:29
Speaker 2: podcast have said that there are a lot of advancements
18:34
Speaker 2: being made within Hirshbrungs, and one of them being, you know,
18:37
Speaker 2: the scars. I mean, I've spoken to people who are
18:41
Speaker 2: around my age, within sort of you know, maybe ten
18:46
Speaker 2: years or so either way, and they do have that
18:49
Speaker 2: big what I call it a train track effectively, so
18:53
Speaker 2: it has sort of a scar right across the middle
18:55
Speaker 2: and then sort of lines going vertically. It's a big
19:02
Speaker 2: horizontal line and lines going verstically down. I think there's
19:04
Speaker 2: about ten on there. Looks exactly like a train track.
19:08
Speaker 2: But I spoke to somebody the other day saying, no, no, no,
19:10
Speaker 2: that we don't. We don't have things that look like
19:12
Speaker 2: that anymore. We have sort of very little scars that
19:16
Speaker 2: you can't see a huge amount of and things like that.
19:19
Speaker 2: And so hopefully in time, I mean, there'll always be
19:23
Speaker 2: a scar of some kind, but maybe in time there'll
19:26
Speaker 2: be sort of really really tiny that you can't quite
19:29
Speaker 2: see it anymore.
19:30
Speaker 3: Well, but I don't know, I'm being too sort of
19:34
Speaker 3: romantic about this. Definitely the wrong word, but like for me,
19:40
Speaker 3: I don't know what's wrong with it?
19:43
Speaker 2: Yeah, you know, very true, you know.
19:46
Speaker 3: I remember I remember actually when I was at a
19:48
Speaker 3: drum school, Rada, we were doing a doing a film
19:53
Speaker 3: class and you know, someone asked, why do you do
19:56
Speaker 3: you have to put your hands backwards and for when
19:58
Speaker 3: you do like do for adverts and things, you have
20:00
Speaker 3: to show your hands and it said, They said, well,
20:02
Speaker 3: that's just to see if you've got any scars, scars,
20:05
Speaker 3: are any abnormalities on your hand? And I was like,
20:08
Speaker 3: you know, I was, I was like, what's wrong with scars?
20:13
Speaker 4: Like line of lag?
20:14
Speaker 3: And they said, well, from a sort of advertising perspective,
20:17
Speaker 3: they don't want to be you know, the client, the
20:20
Speaker 3: consumer doesn't want to be looking at you're advertising a
20:23
Speaker 3: mobile phone and they're looking at the scar as opposed
20:25
Speaker 3: to the product. Then it's not landing. It's as much
20:28
Speaker 3: as it And I was like, okay, is it? And
20:32
Speaker 3: you're sort of fighting against the system human psychology or whatever,
20:35
Speaker 3: and you're like, that is such a shame that I
20:37
Speaker 3: want to I want to move into a situation where
20:39
Speaker 3: people are like celebrating scars in the same way they
20:42
Speaker 3: they they represent stories in the same way tattoos do.
20:45
Speaker 3: And that like if the if the body is a
20:47
Speaker 3: sort of canvas, it's like, well, what's that, Oh what's that?
20:50
Speaker 3: Oh that's cool, what's this, rather than like, ah, let's
20:53
Speaker 3: just do everything we can to hide this so that
20:55
Speaker 3: people don't see. Are you know this is? This is
20:58
Speaker 3: the thing I want to I want to and now
21:00
Speaker 3: I want to talk about it. Lows is when why
21:01
Speaker 3: when I found out about your podcast, I was like,
21:03
Speaker 3: oh my god, I need to get on that and
21:04
Speaker 3: to like because it because it's it's it's incredibly empowering.
21:09
Speaker 3: It's incredibly like to know that other people have had
21:12
Speaker 3: the same experience but haven't gone through it yourself, and
21:15
Speaker 3: and and say I got through that. I got through that,
21:18
Speaker 3: and I had twenty percent chance of survival and and
21:21
Speaker 3: I made it. And obviously I was just a baby,
21:24
Speaker 3: probably very little to do with me, But I like
21:27
Speaker 3: to think that, you know, my my outlook and and
21:30
Speaker 3: sort of driving forward as a result of my experience
21:32
Speaker 3: of having Hushbrungs is different from from from someone who
21:37
Speaker 3: who hasn't had that experience. And I think like personalities
21:40
Speaker 3: are built through driving through adversities in my opinion. And
21:44
Speaker 3: and that's just saying I've got a wonderful personality. But
21:46
Speaker 3: I'm saying, carry on, that's good.
21:50
Speaker 6: I think you go through.
21:51
Speaker 3: Something like that, you have to you have to negotiate,
21:55
Speaker 3: You have to negotiate difficulty and and and get over
21:59
Speaker 3: problems and and you know that that teenage thing. It's like,
22:02
Speaker 3: I remember I did a I did an autobiographical performance
22:05
Speaker 3: module at Glasgow University and my module was all about
22:10
Speaker 3: my body. Remember that I had like a I won't
22:15
Speaker 3: tell you the whole thing. It take ages, try like
22:17
Speaker 3: the scarf over my scarf, and it was like I
22:21
Speaker 3: basically ended up just taking it off and giving this
22:25
Speaker 3: monlogue about I'm proud of this. That's a very shorthand
22:29
Speaker 3: version of what actually happened. I'm making it sound terrible,
22:31
Speaker 3: and it probably was terrible because I was like, you know,
22:34
Speaker 3: being like, oh, I'm glad, you know, I was saying
22:38
Speaker 3: autobiographic performances from students a un necessarily the greatest things.
22:41
Speaker 3: But I've got them some, but it was it was
22:45
Speaker 3: an incredibly empowering moment for me because I was able
22:50
Speaker 3: to stand in front of my friends and celebrate who
22:53
Speaker 3: I was and celebrate what was on my body and
22:56
Speaker 3: what that represented in the way that I hadn't really
22:59
Speaker 3: done before. And that was that was that was great.
23:03
Speaker 3: I just yes, both my overall point as I wish
23:05
Speaker 3: that we could move past the thing of scars being
23:08
Speaker 3: something that we need to hide or make smaller or like,
23:11
Speaker 3: you know, let's talk about them and let's talk about
23:13
Speaker 3: why they matter and why you're here, like why you're
23:16
Speaker 3: at here, this this scar is I'm still here.
23:20
Speaker 2: Yeah, I'm still absolutely absolutely. And you mentioned a point
23:23
Speaker 2: there about you know, you might not know what's going
23:26
Speaker 2: on when you are a baby and you're having all
23:29
Speaker 2: of these you know, tubes and being surgically operated on,
23:35
Speaker 2: et cetera. But I fully believe that And again I
23:40
Speaker 2: might just be talking whatever, but I believe a great
23:44
Speaker 2: amount of resilience comes from that. I mean, I again,
23:49
Speaker 2: I don't know whether it's the same for other Hirschprungs people,
23:51
Speaker 2: but I have an incredibly high pain threshold, ridiculously high.
23:56
Speaker 2: But I believe that came from having so many surgeries
23:59
Speaker 2: as a baby, and I think it does in a
24:02
Speaker 2: way make you incredibly resilent.
24:06
Speaker 3: Yeah, yeah, And I actually think that generally speaking, and
24:13
Speaker 3: Jamie will attest to this that, yeah, my immune system
24:16
Speaker 3: seems to be stronger as well. I'm very rarely ill
24:20
Speaker 3: saying that. Actually, about two months ago I was hospitalized
24:26
Speaker 3: for dehydration because I got gastroans writers and because Dylan
24:33
Speaker 3: got it and I was desperately trying to get him
24:36
Speaker 3: to drink dirolite and try and get him better. And
24:38
Speaker 3: I succeeded. But Jamie was away with work at this time,
24:43
Speaker 3: just in case you thought she was just not involved
24:44
Speaker 3: in them, fine, and I got the same thing. Whatever
24:51
Speaker 3: Dylan had, I had it as well. Dylan made a
24:54
Speaker 3: recovery and I got progressively worse. And it's the first
24:58
Speaker 3: time in about fifteen years that I was falized because
25:01
Speaker 3: obviously the main the main issue for me now is
25:07
Speaker 3: de hydration. That I have a letter from Greatlminstras saying
25:10
Speaker 3: saying if this which I actually don't have anywhere, but says,
25:15
Speaker 3: put this man on a drip if he needs to,
25:16
Speaker 3: it could be fatal. And I got uh probably yeah,
25:22
Speaker 3: more dehydrated than I have ever been because I thought
25:26
Speaker 3: I could as I always have done. It's not like
25:27
Speaker 3: I haven't got dehydrated. I've always been able to hydrate myself,
25:30
Speaker 3: whereas this time it just it just flowed me. And
25:33
Speaker 3: I phoned UH one one one and I passed out
25:35
Speaker 3: on the phone and it was just me and me
25:37
Speaker 3: and Dylan in the house, and he was he was incredible,
25:40
Speaker 3: like he was. He was incredible that the ambulance then
25:43
Speaker 3: came and and Dylan was just sort of their stroking hand.
25:47
Speaker 3: I mean, he's three, his street drug man. I'm like,
25:50
Speaker 3: we're going to take take Daddy to the hospital now,
25:53
Speaker 3: and it was like, no, you haven't finished checking him.
25:55
Speaker 3: So he had like all things on me and like
25:58
Speaker 3: he was just like he's just the most empathetic and
26:00
Speaker 3: he was like, it's okay, Daddy, It's okay. I was like,
26:02
Speaker 3: why am I so? How is this? You know? It's
26:05
Speaker 3: just just amazing. So that was that was again quite
26:09
Speaker 3: quite a humbling experience, because I think as you grow
26:12
Speaker 3: up with Hushprung's, obviously your body gets stronger, you adapt,
26:16
Speaker 3: and you're you know all that, you know, you just
26:18
Speaker 3: get better. But an experience like that makes you realize,
26:23
Speaker 3: actually things aren't because they're getting up in the night
26:27
Speaker 3: and going to the toilet and you know you need
26:28
Speaker 3: to go to the toilet more during the day, and
26:30
Speaker 3: the consistency of your poo and things like whatever. Is fun.
26:33
Speaker 3: It's just part of your normal life, right. But the
26:38
Speaker 3: going into hospital and having that treatment that you've had,
26:43
Speaker 3: it's like, oh, this can flaw you, this can still
26:46
Speaker 3: get you. This is like, this is still a thing.
26:50
Speaker 3: You know. I used I used to sort of maybe
26:52
Speaker 3: put it in the same way I didn't use disabled toilets,
26:55
Speaker 3: is that I would always kind of maybe diminish that
26:58
Speaker 3: how serious it is maybe, And so that made me
27:05
Speaker 3: sort of, yeah, I don't know. Just again I warn
27:08
Speaker 3: some mortality and stuff. I wasn't close to dying, I
27:10
Speaker 3: don't think well actually saying I wasn't close to dig
27:13
Speaker 3: but my kidney levels, again speaking to my brother, were
27:17
Speaker 3: inpredomly high and obviously I've got only got one kidney,
27:20
Speaker 3: so there was when I went in, there was a
27:23
Speaker 3: there was a potential for if it got worse, didn't improve,
27:27
Speaker 3: I would it was on the road to dialysis and
27:30
Speaker 3: all that sort of stuff, which is dangerous yeah, and
27:35
Speaker 3: in the same yeah, I wasn't allowed to play rug
27:36
Speaker 3: like my parents don't want me to play rugby at
27:39
Speaker 3: school and things like this.
27:40
Speaker 2: Exactly, absolutely, But I think that's that's an important point
27:45
Speaker 2: you make about people who, yeah, maybe like us who
27:48
Speaker 2: were a great ormond streamer, were at a certain hospital
27:51
Speaker 2: till sixteen, and then you leave, and then it's kind
27:54
Speaker 2: of like, well, everything's fine now well and people say
27:58
Speaker 2: things like, well I had hirshbruns. It's well you still
28:02
Speaker 2: you still have it? You know, it's not you know,
28:05
Speaker 2: the the ganglion cells in the intestine haven't grown back
28:09
Speaker 2: overnight just because she was seventeen. It doesn't doesn't quite
28:14
Speaker 2: work like that.
28:15
Speaker 3: Did you have Did you have a stoma?
28:17
Speaker 2: I did? I had the ace malone stoma when I
28:19
Speaker 2: was nine and then reversed at twenty three.
28:23
Speaker 3: Wow. Wow, I don't have I didn't have a stoma,
28:29
Speaker 3: like I never had that growing up past being out
28:32
Speaker 3: of hospital.
28:34
Speaker 2: No.
28:35
Speaker 3: No, I so you so you lived those thirteen thirteen
28:39
Speaker 3: years going into like, so you must have experienced the
28:43
Speaker 3: same level of embarrassment as a teenager. How was it?
28:47
Speaker 2: Yeah, I mean, perhaps I know we were talking a
28:49
Speaker 2: little bit off air about Tega derms. I've mentioned Tega
28:52
Speaker 2: d ms before and about having the tegaderm over the stoma,
28:56
Speaker 2: but it was used to do the washouts, so put
29:01
Speaker 2: the kafter through and I think it's like once a
29:04
Speaker 2: week or something, you do four different solutions. Saline was
29:07
Speaker 2: one of them. I think there was another couple of
29:09
Speaker 2: other things as well, and I do that once a week,
29:12
Speaker 2: but then over time I had to do the washouts
29:17
Speaker 2: less and less until at fifteen we sort of trialed
29:21
Speaker 2: stopping them entirely, and thankfully I haven't had to do
29:27
Speaker 2: another wash out since the age of fifteen. But I
29:30
Speaker 2: partially attribute that to keeping very fit because I've always
29:34
Speaker 2: been in the sports industry, so keeping keeping healthy, I
29:39
Speaker 2: think was something that was really really important. But then
29:44
Speaker 2: I had the reversal at twenty three, but I didn't
29:47
Speaker 2: know before then that you could have Stona reversals, So
29:51
Speaker 2: I never knew. Leaving Greave Ormond Street, nobody, I guess
29:56
Speaker 2: nobody said we've sort of kept it just in case
29:59
Speaker 2: I needed it again, but I never knew you could
30:03
Speaker 2: have reversals until then. It started becoming a bit of
30:07
Speaker 2: a problem. It started leaking and it was just you know,
30:11
Speaker 2: again being sports coach that I am and working in
30:17
Speaker 2: schools all the time, and.
30:18
Speaker 4: It was leaking. It was just, you know, it's not ideal.
30:21
Speaker 2: So then I did some research, spoke to GP, said
30:25
Speaker 2: you know, can this thing actually re reversed? And they said, oh, yeah,
30:28
Speaker 2: of course it can, so oh right. I didn't know that,
30:31
Speaker 2: And so then I had it reversed at twenty three
30:35
Speaker 2: and then touch Wood no more operation since twenty three
30:40
Speaker 2: and I'm thirty two.
30:41
Speaker 3: Now, wow, what does that feel? What did that feel
30:45
Speaker 3: like to have a to have a obviously, the stoneA
30:48
Speaker 3: must just felt part of you. I don't even remember
30:50
Speaker 3: before before nine, that's the thing. At nine.
30:53
Speaker 2: I mean, I don't remember a great deal about it.
30:58
Speaker 2: It just kind of it was just there, you know,
31:00
Speaker 2: and one day you you don't have a stomer, and
31:03
Speaker 2: the next day you do have a stomer, and then
31:06
Speaker 2: you have to do all these you know, washouts and
31:08
Speaker 2: things like that which were not which were not nice,
31:11
Speaker 2: you know, and but it was better than an alternative,
31:15
Speaker 2: I guess.
31:16
Speaker 3: But then, yeah, that's fact like friendships or relationships.
31:20
Speaker 2: Sorry, that's too Yeah, No, I don't think so. But
31:25
Speaker 2: I think I was self conscious of it. I mean
31:28
Speaker 2: obviously doing a lot of sport pee lessons, playing football
31:35
Speaker 2: at the weekends, playing cricket at the weekends.
31:37
Speaker 4: You know, you're constantly in changing rooms, aren't you.
31:40
Speaker 2: So you know there will be people that went, oh,
31:43
Speaker 2: what's that? You know, and obviously you can't explain it
31:47
Speaker 2: necessarily because it would take hours, so you kind of
31:51
Speaker 2: just say, oh, yeah, you know, I have a stomach condition,
31:57
Speaker 2: and generally they go oh, okay, you know, and you
32:00
Speaker 2: move on with life. Or some people, like like you said,
32:03
Speaker 2: with the shark attack, I have had some people I
32:06
Speaker 2: do remember this going way way back, probably about twenty
32:09
Speaker 2: years ago, with people who went, oh, you're attacked by
32:11
Speaker 2: a shark, And it was a genuine question. It wasn't
32:14
Speaker 2: taking a mick. And sometimes I'd say yes and sometimes
32:18
Speaker 2: I'd say no. It depended whether I wanted to lie
32:21
Speaker 2: about it or not.
32:22
Speaker 3: Yeah, but yeah, I think it's I think that that.
32:28
Speaker 2: Body confidence I think is really really important and something
32:33
Speaker 2: that isn't necessarily talked about a huge amount. I think
32:39
Speaker 2: that's incredibly interesting. Just just sort of with the scars
32:46
Speaker 2: as as they are and being proud of them, I
32:50
Speaker 2: think is definitely a great way to go instead of
32:54
Speaker 2: you know, like we, like you said with the swimming
32:56
Speaker 2: and like me as well, sort of almost trying to
32:58
Speaker 2: hide them from people. And I think that kind of
33:05
Speaker 2: and again, it's it's a it's a personal thing, isn't it.
33:08
Speaker 2: You can't necessarily just say to somebody, be happy with
33:12
Speaker 2: with your scars, because because they might, you know, they
33:14
Speaker 2: might take quite a long time to to sort of
33:19
Speaker 2: appreciate that, I guess, and I think that's really important.
33:23
Speaker 3: Suppose that's why the Daddy, I Love my scar moment
33:26
Speaker 3: was so huge. Then it was just like it was
33:29
Speaker 3: just a pure thought and it's like, if you're having
33:32
Speaker 3: that now, that's what we're just going to sort of
33:35
Speaker 3: nurture and cultivate as a as a as a thought process,
33:38
Speaker 3: which is that you're proud of your scar, and you're
33:39
Speaker 3: proud of you're proud of this thing that you have
33:41
Speaker 3: that makes you different. And it's the difference. It's the difference,
33:44
Speaker 3: I suppose is that having any sort of disability of
33:48
Speaker 3: any description or anything that makes you different from everyone
33:53
Speaker 3: is a wonderful thing and should be it should be celebrated.
33:57
Speaker 3: Even even the word disability I have a problem with,
34:01
Speaker 3: you know.
34:02
Speaker 2: Yeah, yeah, this isn't it. It's that disc part, which.
34:05
Speaker 3: Is the dis part. It's that it's it's uh yeah,
34:09
Speaker 3: just others others in a negatives and it's as negative
34:13
Speaker 3: connosations that you're somehow less than and you're not. This
34:19
Speaker 3: is the opposite of that for me. So yeah, yeah.
34:24
Speaker 2: I totally agree. I totally agree, And I'd like to
34:27
Speaker 2: move on if I made to something we mentioned right
34:29
Speaker 2: at the very beginning, and I didn't want to give
34:35
Speaker 2: away any spoilers. I've done it, done half an hour's
34:37
Speaker 2: worth of suspense. I think that's enough for people that
34:42
Speaker 2: we share as well as having Hirshbruns And anybody who
34:46
Speaker 2: has listened to Jamie's episode will know this as well,
34:50
Speaker 2: that we for many, many years, but decade and a
34:54
Speaker 2: half just over had the same consultant, same Hirshprung specialist,
35:00
Speaker 2: the wonderful mister Kylie Boy who saved both of our lives.
35:08
Speaker 2: And I mean, I I can't thank the guy enough.
35:14
Speaker 2: You know, hopefully we'll get to speak to him again
35:17
Speaker 2: one day, which would be amazing. What were your experiences
35:22
Speaker 2: of mister Kylee?
35:25
Speaker 3: Oh, I just can't. Uh, he's obviously outside of my
35:30
Speaker 3: family he's the most important man in the world, Like
35:34
Speaker 3: I wouldn't be here without him. He is a legend.
35:39
Speaker 3: I mean, he's a legend. When we when we were
35:42
Speaker 3: in hospital with with Dylan, they said, you know you
35:44
Speaker 3: were in hospital where you've read who are you? Who
35:46
Speaker 3: is your surgeon? I said, mister Kylie. It was like
35:49
Speaker 3: and didn't then you already said this. It was like,
35:52
Speaker 3: you know, I said the name of a major celebrity
35:54
Speaker 3: and my Dylan's surgeon was mister mister was mister Carlie's protege.
36:03
Speaker 3: Like again, this sort of circle of life thing was
36:06
Speaker 3: going on there as well. And I remember we had
36:09
Speaker 3: a little chat before we went on on air about
36:14
Speaker 3: when I came. When I came to London to go
36:16
Speaker 3: to the Drama Square after my time in Glasgow. I
36:20
Speaker 3: saw I was on my laptop just doing something and
36:22
Speaker 3: I heard his voice it's wonderful sort of Irish lilt,
36:27
Speaker 3: and looked up and there he was. It was a
36:29
Speaker 3: documentary about hope and faith, the Siamese Twins, and he
36:32
Speaker 3: obviously did that operation, and I was like, I need
36:35
Speaker 3: to go and see him. I need I need to
36:36
Speaker 3: go and see him. I need to go to great
36:37
Speaker 3: Elm Street and see him for them. So I went
36:38
Speaker 3: to Russell Square, I went to great em Street and
36:40
Speaker 3: I said, oh, sorry, can I just see mister Carlie.
36:42
Speaker 3: Obviously you can't because he's the busiest man in the
36:45
Speaker 3: world saving Jildren's lives. Why would you just want to
36:47
Speaker 3: Who are you? By the way, I was like, I'm Fred,
36:51
Speaker 3: I'm Spike. He might remember me. I was here for
36:54
Speaker 3: two years and long story short, five weeks later got
36:58
Speaker 3: a ten minute window and went in and I just
37:01
Speaker 3: basically shook its hand and thanked him for saving my life.
37:03
Speaker 3: And obviously he's the most humble man in the world,
37:06
Speaker 3: so obviously didn't want any of that, didn't want any
37:09
Speaker 3: of that at all. We just turned into a consultation
37:11
Speaker 3: about my bowel movements and I was like, okay, here
37:13
Speaker 3: we go. But he's just he's just the most incredible man.
37:18
Speaker 3: There was a documentary which I'm desperately trying to get
37:20
Speaker 3: old of, and so is my brother, who's a pediatric
37:22
Speaker 3: consultant now as a result of me being ill in Ostall,
37:25
Speaker 3: he's now a pediatric consultant at Salisbury. Sebastian Gray shouts
37:29
Speaker 3: out and he's trying to get old of it as well.
37:34
Speaker 3: The documentary Great Almonstry where mister Kylie and another surgeon
37:37
Speaker 3: whom I can't remember his name now talk about what
37:40
Speaker 3: it is to do what they do, and it's just
37:43
Speaker 3: incredible because you see it from both sides, and there's
37:47
Speaker 3: different cases that they study. But you see mister Kylie
37:51
Speaker 3: talking about what it is to do what he does,
37:53
Speaker 3: and you also see that moment where you obviously they
37:56
Speaker 3: show him doing the operations to a boy as a
37:59
Speaker 3: tumor in in his stomach, I believe, and then he
38:02
Speaker 3: removes it, and then that moment where he comes in
38:04
Speaker 3: and tells the parents that he's okay, And it's the
38:08
Speaker 3: it's the juxtaposition of of their like almost falling to
38:12
Speaker 3: their knees, gratitude to him, and just like I don't
38:15
Speaker 3: know what to do with themselves that they're there, their
38:18
Speaker 3: young child is is saved and better because of him,
38:22
Speaker 3: and him sort of just shrugging off as if he's
38:24
Speaker 3: just you know, bought them a coffee. It's like, no, no, no,
38:29
Speaker 3: I need to realize that you've you've saved us, you've
38:32
Speaker 3: saved our family, You've saved this person. I like I
38:35
Speaker 3: say to my brother and my sister in law who's
38:37
Speaker 3: a GP as well. But I just and any doctors,
38:41
Speaker 3: I just don't know how they do it. I just
38:43
Speaker 3: don't know obviously. The it's just the pressure, the like,
38:49
Speaker 3: the the the steaks. I just like, I'm an actor, director, man,
38:55
Speaker 3: and like just sort of mess around for a living.
38:58
Speaker 3: I don't This is his his craziness. Like if I
39:04
Speaker 3: saved anyone's life ever, like that's all I would talk about.
39:08
Speaker 3: I would always put it in conversations. I would phone
39:10
Speaker 3: people up and tell them it would be a thing,
39:13
Speaker 3: like it wouldn't. I just couldn't shrug it off in
39:16
Speaker 3: the way that he did. He does. But from my perspective,
39:20
Speaker 3: seeing that again was like imagining him. This is obviously
39:22
Speaker 3: before Dylan was born. Imagining him coming and telling my
39:25
Speaker 3: parents that I was better after an operation, and the
39:29
Speaker 3: fact that he did that hundreds thousands of times in
39:33
Speaker 3: his life. I mean, what a life and what a guy.
39:36
Speaker 3: How do you not develop an ego? Oh no, I've
39:39
Speaker 3: done no idea, I have an ego. I just don't.
39:43
Speaker 3: And then and then during this consultation of meeting him
39:45
Speaker 3: and saying thank you for saving my life, he then
39:48
Speaker 3: started recounting things that my parents didn't even remember. He said,
39:51
Speaker 3: did you ever end up moving to Australia? And I
39:54
Speaker 3: was like what? And then I phoned my parents said
39:57
Speaker 3: what's this talk about us moving to Australia? And it
39:59
Speaker 3: jogged him for them. And there was a period of
40:01
Speaker 3: time when we when you were like six, where we
40:03
Speaker 3: were potentially going to move to Austradia. I was like,
40:06
Speaker 3: how how does this man remember that he called meet?
40:09
Speaker 3: He called me Spike, like you remember my name from hospital?
40:13
Speaker 3: He was like, woant me to call you Spike or
40:15
Speaker 3: Frederick and go by fred now? And he's like, okay,
40:18
Speaker 3: call you fred. I was like, oh my god. Play
40:20
Speaker 3: absolutely incredible, like absolutely, and I would I would love
40:25
Speaker 3: to meet him again. I would love to see him
40:26
Speaker 3: again obviously, you know, as I said, it takes this
40:29
Speaker 3: five weeks to get hold of him last time. Yeah,
40:33
Speaker 3: to wait, and if you can get him on the podcast,
40:35
Speaker 3: I would, Ah, my goodness, that would be incredible. He's
40:37
Speaker 3: just he's an incredible man. And yeah, I've got I've
40:42
Speaker 3: got nothing nothing negative to say about him. Cut. One
40:45
Speaker 3: of my mom's favorite stories about what one of the
40:48
Speaker 3: times I went in to see him is the actually
40:50
Speaker 3: a story about me rather than very gatistical Fred was.
40:55
Speaker 3: He said to me, what's your favorite favorite time of
40:58
Speaker 3: the day? When when you schooch every time of day?
41:01
Speaker 3: And I was like, blush time because I just I
41:05
Speaker 3: was always always hungry, always hungry. It's very expensive in
41:09
Speaker 3: this house, very expensive, and it's going to be expended
41:12
Speaker 3: like me and Dylan with hirsh Brouns. I mean, he's
41:15
Speaker 3: going to get as a teenager and it's going to
41:16
Speaker 3: be like, oh, okay, we need to get another job,
41:19
Speaker 3: like to work, to work a team. Yeah, that's amazing.
41:25
Speaker 2: And I pick up your point about not having an ego.
41:28
Speaker 2: And I mean, you know, if I mean again, who
41:32
Speaker 2: knows how many lives he saved. You know, we're probably
41:36
Speaker 2: talking hundreds, hundreds, thousands, you know of operations of people
41:43
Speaker 2: walking in to see parents and saying, yep, everything's fine,
41:47
Speaker 2: you know, or we've done this, and we've done this,
41:49
Speaker 2: and whatever the issue was, we've you know, we've sorted it,
41:52
Speaker 2: solved it. And I mean, as you said, you know,
41:56
Speaker 2: you talk about it all the time, but he's such
41:58
Speaker 2: an elusive man. I mean, I would have, you know,
42:00
Speaker 2: I'd have a LinkedIn page, I'd have everything saying, oh,
42:03
Speaker 2: I stayed someone's life. You know, it would be the
42:06
Speaker 2: first thing that I think my voicemail would say by
42:10
Speaker 2: this is Tom, I save someone's life. Anyway, what do
42:12
Speaker 2: you want?
42:13
Speaker 4: You know, it would be it would be everything.
42:16
Speaker 2: Yeah, but he's such an elusive man and he he's
42:21
Speaker 2: done the odd sort of seminar here and there. But
42:25
Speaker 2: apart from that, you know, there's no social media and
42:28
Speaker 2: there are sort of social media posts about him, but
42:31
Speaker 2: he doesn't have social media for as far as I know,
42:35
Speaker 2: it doesn't have you know, Instagram linked in all of
42:37
Speaker 2: that stuff.
42:38
Speaker 3: Just I just think, I just think again, it's it's
42:44
Speaker 3: I feel very very obviously, very lucky to have had
42:48
Speaker 3: him as as a surgeon and to be in Great
42:50
Speaker 3: Woman Street. You know, since Dylan's diagnosis, we joined a
42:55
Speaker 3: Facebook group. Are you on that as well? I'm on
43:00
Speaker 3: a couple.
43:01
Speaker 2: I think there's a Hirshprung's Family and Friends which is
43:03
Speaker 2: got about ten thows on it, and then there's hush
43:05
Speaker 2: Sprung's Group UK.
43:12
Speaker 3: And I am just very lucky because not everyone has.
43:19
Speaker 3: Not everyone's been as lucky with the care they've received
43:24
Speaker 3: and where they are in the world and the particular
43:27
Speaker 3: condition that their child has, and it's a it's a
43:32
Speaker 3: group that I when Dylan was in hospital, I just
43:35
Speaker 3: had to stop looking at it because it would be
43:37
Speaker 3: is obviously people don't in the same way you go
43:38
Speaker 3: to a you go to a restaurant, and you don't
43:41
Speaker 3: often post things that are good, do you, Well, it's
43:45
Speaker 3: neat reviews that are bad. And it's similar with this
43:49
Speaker 3: group is that people would often would only really post
43:51
Speaker 3: saying my son has this and my daughter has this,
43:54
Speaker 3: and it would all just be sort of emergencies about
43:58
Speaker 3: how bad the condition is, and it would just be
43:59
Speaker 3: sort of it would just make me scared about the
44:02
Speaker 3: fact that I've had this experience that that has been
44:06
Speaker 3: by and large obviously traumatic for my parents. But my
44:11
Speaker 3: memories of it were were mostly positive and fine, like, yeah,
44:16
Speaker 3: it's two years of a long time and obviously past that,
44:19
Speaker 3: obviously a lot of my time was spending Great Woman Street,
44:21
Speaker 3: but I don't, Yeah, I've just been incredibly lucky to
44:25
Speaker 3: be here just sort of exist and live my life.
44:29
Speaker 3: And you know, I'm standing forty next year, which is
44:32
Speaker 3: which is amazing and stuff and that it doesn't seem
44:36
Speaker 3: to yeah, and I just I just feel really grateful
44:39
Speaker 3: for that, because there are there are obviously stories that
44:42
Speaker 3: aren't as successful with people with with with Hirshbrum's and
44:45
Speaker 3: I suppose things like this and that community. I mean,
44:48
Speaker 3: I'm not saying that this supposed to the group shouldn't exist.
44:50
Speaker 3: By the way, I think it's fantastic that people are
44:51
Speaker 3: reaching out offering help, and I've I've written a few
44:54
Speaker 3: posts offering hope. I suppose saying look, I went through
44:59
Speaker 3: all of this and I am fine, and hopefully I
45:03
Speaker 3: think crossing my fingers that you know, I just feel
45:06
Speaker 3: at that stage it feels so sort of futile to
45:09
Speaker 3: say those things because you're like, well, you're in the
45:14
Speaker 3: depths of hell right now, and nothing I could say
45:16
Speaker 3: or anyone could say, you know, because in terms of
45:19
Speaker 3: like practical advice, we were learning on the job as
45:21
Speaker 3: as well. I didn't when putting Dylan's stoma on and
45:26
Speaker 3: like putting dylanster on, putting the bags on and things
45:29
Speaker 3: like was a whole new world to me. It wasn't like, oh,
45:31
Speaker 3: here we go again, because I've never I didn't have
45:34
Speaker 3: a stoma that went past the age of two. I
45:36
Speaker 3: don't think, you know it was like, I remember my
45:41
Speaker 3: parents telling me a story that one of the worst
45:44
Speaker 3: memories of me and hostel was watching me with my
45:47
Speaker 3: stomach open with a hole in the table. I had
45:52
Speaker 3: my hands tied and my my the waste from my
45:56
Speaker 3: stomach was being dropped into a bucket. Wow, because which
46:05
Speaker 3: is a memory that I I don't want to contell, Like,
46:08
Speaker 3: but they you know, this was a thing that they
46:10
Speaker 3: would say happened, and I don't know how that could happen. Well,
46:15
Speaker 3: why that happened? I'm like, why why did they tie
46:18
Speaker 3: me to a table? Why was there a hole in
46:21
Speaker 3: the table? Was it specifically desired?
46:23
Speaker 2: Like what?
46:24
Speaker 3: And why? Into a bucket? Like everything about it? Yeah,
46:27
Speaker 3: there's nothing about it that sounds normal exactly. So in
46:30
Speaker 3: terms of moving forward, you know, we had some hot
46:34
Speaker 3: like the time in hospital with Dylan, there was some
46:38
Speaker 3: really horrible Like there's nothing I would take Dylan in
46:41
Speaker 3: for his operations. He had five in total, and there
46:45
Speaker 3: is nothing that prepares you for putting your child under anesthetic,
46:49
Speaker 3: like and watching the eyes roll back in the head
46:51
Speaker 3: and then going sort of floppy like it's it's the worst.
46:54
Speaker 3: It's the worst thing because you have to sort of
46:58
Speaker 3: bribe them. I remember we show them as like dancing vegetables,
47:01
Speaker 3: and he was like, well, happy sort of dancing, and
47:02
Speaker 3: then they start doing the gas and their things, and
47:04
Speaker 3: then he goes to this happy thing to like just
47:07
Speaker 3: being floppy and sort of lifeless, and you're like, ah,
47:10
Speaker 3: well that's something I'll never forget, you know, But I
47:14
Speaker 3: didn't have a tied to the table. We didn't have that.
47:19
Speaker 3: So we've moved on, let's say absolutely.
47:24
Speaker 2: And then just to sort of as we wrap up
47:28
Speaker 2: towards the end here in terms of that, I know,
47:31
Speaker 2: I asked Jamie the same question. In terms of Dylan,
47:34
Speaker 2: would you like to see him go into the acting world?
47:37
Speaker 2: I would liked him to do obviously whatever he wants
47:40
Speaker 2: to do. He's got this weird thing where he loves
47:42
Speaker 2: to perform. He does this amazing bow which obviously picked
47:46
Speaker 2: up from seeing Jamieans shows. He's got this amazing bow
47:51
Speaker 2: that he does.
47:51
Speaker 3: But then he also just randomly gets really really really shy,
47:55
Speaker 3: like won't do anything in front of any like does it.
47:58
Speaker 3: But also as this I don't know, I don't know,
48:00
Speaker 3: so it's a jury's out. Really, he's very creative, he's
48:03
Speaker 3: very maybe eccentric. No, he's just he's a character. He's
48:09
Speaker 3: got a lot of personality. He could go in any
48:11
Speaker 3: any different direction, like he's going to do something. He's
48:14
Speaker 3: going to do something that involves people, for sure. Very
48:18
Speaker 3: good with people. As I mentioned when I was when
48:20
Speaker 3: I was sick a couple of months ago. His empathy
48:23
Speaker 3: is for a three year old is quite extraordinary. So
48:27
Speaker 3: he my follow is his uncle.
48:29
Speaker 2: Yes, that would be fantastic, fantastic. Well, thank you, thank
48:34
Speaker 2: you so so much for coming on it. It has been
48:37
Speaker 2: It has been a pleasure to meet you and to
48:39
Speaker 2: meet somebody else who's has seen mister Kylie and all
48:41
Speaker 2: of the things that we've had and will have in common.
48:45
Speaker 2: It's just been extraordinary. Lastly, where where can people find you?
48:52
Speaker 3: People go find me. But the thing is, this is
48:54
Speaker 3: the thing. I'm not really a social media and I
48:56
Speaker 3: should be in question, I should be better at it.
48:59
Speaker 3: But I'm on Twitter at at Freddy g one three
49:04
Speaker 3: oh four that's Freddie with a Y. And then I'm
49:07
Speaker 3: literally having to look as we're live on the thing
49:09
Speaker 3: to see what my Instagram handle is because it's the
49:12
Speaker 3: thing that I don't use at all. What is it
49:15
Speaker 3: let's have a look. I can't even fight. Is it Fred?
49:18
Speaker 3: Oh yeah, Bread Underscore Gray with an A one three thirteen.
49:23
Speaker 3: It's Fred Underscore Gray thirty And I'm on Instagram there,
49:27
Speaker 3: So that's where you can find me. But you won't
49:29
Speaker 3: really find me there because I'm not. I don't. I
49:32
Speaker 3: don't use it. I probably need to get on it more.
49:34
Speaker 3: I just have this thing of like, well, I don't
49:36
Speaker 3: that's not interesting, you know, but like like I don't,
49:40
Speaker 3: No one cares what I think about that thing, like
49:42
Speaker 3: just like okay, I'll just cue. Yeah. So that's where
49:45
Speaker 3: you can find me. That's what I think if you
49:47
Speaker 3: use that.
49:49
Speaker 2: Lovely well, thank you, thank you so so much for
49:51
Speaker 2: coming on Weird. I wish all three of you, JB,
49:55
Speaker 2: yourself and Dylan all the best for the future.
49:58
Speaker 3: You know, and if the podcast is running in i'd
50:01
Speaker 3: say ten years, yeah, dinner on, you know.
50:07
Speaker 6: I must let you know in ten years listen older
50:11
Speaker 6: a time by that free done and then you can
50:14
Speaker 6: you know, You've got me, Jamie and Dylan all talking
50:15
Speaker 6: about it's fantastic and you you know it Suspense nailed it.
50:20
Speaker 3: Spense. People be waiting for Dylan to.
50:22
Speaker 4: Come on exactly right now.
50:24
Speaker 3: We're just not that good at you know, like you
50:26
Speaker 3: could could try you get them on for the next week.
50:30
Speaker 2: We'll give it a go. Thank you so much.
50:34
Speaker 3: Yes, thank you, Tom.
50:39
Speaker 1: Thank you for listening to the podcast. Find us on
50:42
Speaker 1: Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen to previous episodes
50:47
Speaker 1: on Spotify by searching Tom's Hirshbrungs podcast.
51:00
Speaker 4: Book step