Latest / Tom's Hirschsprung's Podcast / Episode 66 - With Faye Roberts (Part 1)

Transcript

Episode 66 - With Faye Roberts (Part 1) · Tom's Hirschsprung's Podcast

0:05
Speaker 1: You are listening to Tom's Hirshbrun's podcast, where our 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. Hello and welcome to
0:39
Speaker 1: episode sixty six of Tom's Hirshprungs Podcast. I am delighted
0:44
Speaker 1: to be joined by Fay Roberts and we are going
0:47
Speaker 1: to talk about well your story with Hirshprungs and lots
0:51
Speaker 1: of interesting factors within that as well. Welcome to the podcast.
0:56
Speaker 2: Thank you very much, it's a pleasure.
0:58
Speaker 3: Thank you so much for coming on. And I guess
1:02
Speaker 3: we'll kind of start where we usually start, which is
1:06
Speaker 3: by the beginning, at the beginning, So I guess we'll
1:10
Speaker 3: kind of take it from there and yeah, see how
1:12
Speaker 3: we go.
1:13
Speaker 2: Yeah, bro perfect. So Yeah. I was born in nineteen
1:19
Speaker 2: eighty nine, born with hirshpruings, diagnosed at two days old.
1:26
Speaker 2: Following the failure of passing the coonium. I was blue
1:30
Speaker 2: lighted to older hay across the motorway and blue lights
1:37
Speaker 2: and my parents will forever tell me the story that
1:40
Speaker 2: they were in an old clapped out fiesta that ketle
1:44
Speaker 2: jerking its way along the motorway and I'm kneeanoring off
1:47
Speaker 2: on the motorway in the ambulance. So yeah, I arrived
1:51
Speaker 2: at Older Hay just short two days old and they
1:56
Speaker 2: diagnosed me with Hershbrungs. So following that I had numerous
2:03
Speaker 2: pull throughs a couple of months old, stonmas at nine
2:08
Speaker 2: months old, then another pull through eighteen months old, then
2:14
Speaker 2: another stoma, then another pull through, another stoma, and it
2:17
Speaker 2: kept going like that until I was about four years
2:19
Speaker 2: of age. Following four years of age, there were conversations
2:28
Speaker 2: with consultants over Older Hay. Not there anymore, long gone,
2:34
Speaker 2: but basically, was you know, suggesting I was a lazy child,
2:40
Speaker 2: and actually Hirshprung's was. I guess it was quite rare
2:45
Speaker 2: back then, you know, we're you know, we're talking thirty
2:48
Speaker 2: five years ago. Yeah, I was a later child and
2:52
Speaker 2: I'd grow out of it. I was still in nappies
2:56
Speaker 2: and that went on and on and on until I
2:58
Speaker 2: was I think I was round about ten. I was
3:00
Speaker 2: approaching ten years of age and a lovely new consultant
3:05
Speaker 2: came along and I a right to name it.
3:09
Speaker 3: I can always take it out if you need me.
3:11
Speaker 2: He was lovely mister lamm Graham Lamon, loved the guy,
3:15
Speaker 2: Love the guy. He came along, took over my care,
3:21
Speaker 2: and it was as if it was life changing. You know,
3:24
Speaker 2: remember all the tests as a child, and the fingers
3:29
Speaker 2: up at the bum and you know, all of that.
3:32
Speaker 2: I remember all of that and the washouts, all of
3:36
Speaker 2: which had no effect whatsoever on me. I was so
3:39
Speaker 2: completely bummed up and impacted. It didn't marry which end
3:44
Speaker 2: They tried to shift it mouth ways or top or bottom.
3:48
Speaker 2: Nothing was shifting. So they do lots and lots of operations,
3:54
Speaker 2: anesthetic wash it out that way, and then the months
3:57
Speaker 2: down the line about to square one. So that was
4:01
Speaker 2: basically my childhood, you know, back and forth and tolder. Hey,
4:09
Speaker 2: my education was. I was very very very rarely there,
4:16
Speaker 2: you know, and I had one to one in school
4:18
Speaker 2: and was obviously still in nappies, you know, at the
4:21
Speaker 2: age of ten and eleven, and still there was there
4:27
Speaker 2: was if I remember rightly, good god, we're going back
4:30
Speaker 2: now twenty odd years. So there was definitely the urgency
4:33
Speaker 2: that comes with hirsch ruings and what we call the overflow,
4:39
Speaker 2: and that's the reason for the nappies. Really, I had
4:43
Speaker 2: zero control, zero control.
4:46
Speaker 3: And.
4:48
Speaker 2: Then so around about eleven twelve in the the clinic appointment,
4:55
Speaker 2: and I remember the words, and I'm saying, you know,
4:57
Speaker 2: she's going into high school next year and she's still
5:01
Speaker 2: in the peas. You know, we can't manage like this.
5:05
Speaker 2: And I remember, I remember the clinic appointment like it
5:07
Speaker 2: was yesterday, and Graham's turned around and said, well, let's
5:11
Speaker 2: give her a stoma. So there was two options. There
5:17
Speaker 2: was a stoma or there was another surgery that I'd
5:22
Speaker 2: have to scoll down to London for and basically they
5:26
Speaker 2: take a bit of muscle out of your thigh and
5:29
Speaker 2: put it into the sphincter so that you so the
5:34
Speaker 2: sphincter would start to have a bit more muscle and
5:38
Speaker 2: control and resuming. Anyway, we didn't go for that. We
5:42
Speaker 2: went for a stoma. So yeah, at the age of thirteen,
5:46
Speaker 2: off I went and told hey, April the seventh, remember
5:50
Speaker 2: the date you're gonna have to work out the year
5:54
Speaker 2: that the one the year was, but yeah, April seventh,
5:59
Speaker 2: I went into the stone and it was the best
6:00
Speaker 2: day of my life. So no more sore skin, no
6:06
Speaker 2: more wearing nappies because they're really bloody uncomfortable. Yeah, and
6:15
Speaker 2: so for the first time, I was able to wear knickers,
6:21
Speaker 2: you know, the first time in my life as a
6:23
Speaker 2: little girl, I was able to wear knickers. And so
6:27
Speaker 2: that was, yeah, life changing. And we thought, coming out
6:33
Speaker 2: of all the hay discharged two weeks later, this is
6:36
Speaker 2: it like hirshbrungs if you like is Naively, it's gone.
6:41
Speaker 2: We've done. And then the rest of my teenage years,
6:48
Speaker 2: I was literally in and out of an a with
6:52
Speaker 2: obstructions and there were anything, you know, at least once
6:56
Speaker 2: a month, sometimes twice a month. It was almost getting
7:01
Speaker 2: to a point where the doctors within A and E
7:05
Speaker 2: would be rolling their eyes to say back again, back again.
7:12
Speaker 2: And it didn't matter how much actual loaves which way
7:15
Speaker 2: you try to clear that obstruction, you know, they do it.
7:18
Speaker 2: And I swear one a couple of weeks later. So
7:22
Speaker 2: that was that was pretty much my teenage years. So
7:27
Speaker 2: again I never really went to school, but if I did,
7:33
Speaker 2: I'd get to lunchtime and the fatigue would hit randomout
7:40
Speaker 2: midday and I'd been wiped. I'd be wiped out just
7:43
Speaker 2: from a morning in school. You know, come on, do
7:46
Speaker 2: anything do we? And again it was very much shed
7:53
Speaker 2: been a lazy teenager. Is she just you know, because
7:59
Speaker 2: again hers springs so rare. Back then, I think it
8:03
Speaker 2: was very misunderstood and not just by you know, education,
8:09
Speaker 2: but health as well. And no, obviously I'm over the
8:12
Speaker 2: border and in Wales, so Wales unfortunately are on a
8:17
Speaker 2: planet of their own in terms of health care. But yeah,
8:24
Speaker 2: it was so obviously my A and E would have
8:26
Speaker 2: been Wales, and it was Yeah, it was really really
8:29
Speaker 2: difficult actually, and to have that open communication between Wales
8:33
Speaker 2: and England being older, hay, it was. It was really difficult.
8:39
Speaker 2: You know. Glad we were a lot better than what
8:40
Speaker 2: we were, but there was still that lack of communication
8:44
Speaker 2: or lack of understanding. But yeah, I think we've come
8:48
Speaker 2: a long way, hopefully. And so then in twenty seventeen, I,
8:58
Speaker 2: you know, I had cross words with my consultant who
9:02
Speaker 2: showed very little understanding around hirshbrungs, and so I asked him,
9:07
Speaker 2: you know, there must be somebody out there that specialized
9:11
Speaker 2: in hirshbrungs because I can't keep coming to A and
9:14
Speaker 2: E every month with constructions. And he responded, you find him,
9:20
Speaker 2: and I gladly refer him. So off I went like
9:23
Speaker 2: a dog with a bone. I actually phoned Alder Hey,
9:28
Speaker 2: you know, I was no longer a patient and older Hay,
9:30
Speaker 2: but that's the only contacts I had phoned Old Hay
9:35
Speaker 2: and they were incredible as usual, and you know, they
9:39
Speaker 2: recommended somebody over in the Royal and that's where it
9:43
Speaker 2: all began, really. So I met consulting over in the
9:46
Speaker 2: Royal and I had written all my notes to go
9:51
Speaker 2: and meet this new consultant in the Royal pen and paper,
9:54
Speaker 2: and I thought, I'm gonna put up a fight here,
9:56
Speaker 2: you know, if you know, I've put a real good
9:59
Speaker 2: case together to give me the ACE because I'd researched
10:01
Speaker 2: it and I found that this ACE would work possibly,
10:07
Speaker 2: So I've written it all down with big case kind
10:10
Speaker 2: of notes, had written, walked in. I was like, I
10:12
Speaker 2: really want this ACE. I think it would help the obstructions,
10:15
Speaker 2: the blockages, the consta patient, the overflow. He was like, yeah,
10:19
Speaker 2: I found it. What so you're not going to fight me? Yeah? Fine, okay,
10:27
Speaker 2: So yeah, and I was listed six weeks later if
10:32
Speaker 2: that I'm having the astern. The recovery for the ACE
10:35
Speaker 2: was quite painful. I remember open wounds and you know
10:41
Speaker 2: we're talking two inches deep because I am the right
10:47
Speaker 2: pain when it comes to surgery and wounds, IDHs all
10:51
Speaker 2: the time, and no stitches will hold it. And surprise, surprise,
10:56
Speaker 2: when I had the astern the hestic gain and where
10:59
Speaker 2: they the Mickey button in, it actually sunk and right
11:03
Speaker 2: into too inches into my skin. But the Royal, being
11:08
Speaker 2: the Royal, the manager save it, and all was good.
11:11
Speaker 2: And we bought folic after in for a couple of
11:15
Speaker 2: weeks just to just to get the whole solid, and yeah,
11:19
Speaker 2: that was all good. So then we started irrogating with
11:25
Speaker 2: the bag first and foremost gravity bag. And again I think,
11:31
Speaker 2: because my my bow, whether you know the cells there
11:36
Speaker 2: or not, we think, you know all that's left in
11:39
Speaker 2: my bowl right now there are cells. They don't quite work.
11:44
Speaker 2: So even now I still back up. And so yeah,
11:50
Speaker 2: it was so the gravity bags were never enough for me.
11:54
Speaker 2: I always needed that hush. So agatining off, I went
11:58
Speaker 2: with the dog with a bone and looking for alternatives,
12:02
Speaker 2: and I found the brown ear pump in which I've
12:06
Speaker 2: had that for it must be seven or eight years
12:08
Speaker 2: by now, and that works really really well. So I flush.
12:15
Speaker 2: Initially I flushed twice a day, I think it was. However,
12:19
Speaker 2: that's now gone to six times day. But I'll come
12:22
Speaker 2: to that. Why. So, yeah, the brawniery repump is really
12:27
Speaker 2: really good. However they've discontinued it and we're on for
12:32
Speaker 2: another one. I'll come to that. So yeah, so that's
12:37
Speaker 2: why I use is the is the brawniery pump and
12:40
Speaker 2: it works really really well. I might use a bit
12:44
Speaker 2: of lactulos once a month possibly just to give everything
12:50
Speaker 2: a push from the mouth downwards. And yeah, so in
12:55
Speaker 2: terms of hersh runs, that's where we're up to. And
13:01
Speaker 2: then so where it went all a bit pete tong
13:04
Speaker 2: literally in twenty nineteen. So prior to that, we had
13:11
Speaker 2: been trying for a baby, sorry me and my husband
13:14
Speaker 2: trying for a baby for about eighteen months two years,
13:20
Speaker 2: and my husband has got a spinal injury prior to this,
13:26
Speaker 2: so we had gone to Guyiny and we were awaiting
13:30
Speaker 2: the fertinity appointment to see where we lie. Really anyway,
13:36
Speaker 2: lots of tests, had scans, I had a Guyiny consultant
13:42
Speaker 2: look over me, did more tests, did more scans, and
13:45
Speaker 2: it we discovered that we had blooping juice blocked. So arguably,
13:52
Speaker 2: you know, is it all due down to the surgery
13:55
Speaker 2: as a child from hers friends who knows. And so again,
14:04
Speaker 2: because I was over in Whales, the whales consultant of
14:07
Speaker 2: Guyny refused touch me because I was too high risk
14:11
Speaker 2: with all the adhesions, and point blank refused. So he
14:17
Speaker 2: referred me over to England who is a specialist hospital.
14:23
Speaker 2: I probably won't name it, but you can probably guess where.
14:29
Speaker 2: And we saw a guyiny on fertality specialist consultant who
14:35
Speaker 2: was quite blase A I want to say, and I
14:40
Speaker 2: quote I could do. I can remove floaping tubes all
14:43
Speaker 2: day long. You'll be fine. Okay, great, that's quite good
14:48
Speaker 2: confidence in him. And again listed I was in about
14:53
Speaker 2: six weeks later for my floating tubes to be either
14:58
Speaker 2: removed or clipped. So they can be clipped but remain
15:02
Speaker 2: in place. But as long as they clipped both ends
15:05
Speaker 2: the toxic juices, if you like, can't transition into the womb.
15:16
Speaker 2: So we did that with the surgery. I had the
15:19
Speaker 2: surgery on the Wednesday, and we verbally agreed that he
15:23
Speaker 2: would go in keyhole at the top just above my ribcage,
15:28
Speaker 2: and if he couldn't really see anything, because the surgery
15:31
Speaker 2: was not a necessity, we would abandon anyway he did
15:38
Speaker 2: keyhole couldn't see anything, but because we had the colorectal
15:41
Speaker 2: surgeon with us in theater, he decided to cut me
15:45
Speaker 2: open hip to hip. He it was documented that he
15:52
Speaker 2: had removed both blooping tubes. That was on the way Wednesday,
16:01
Speaker 2: and then by the Thursday, I started to have high temperature,
16:05
Speaker 2: last heart rate, typical signs of sepsist symptoms. Remember being
16:11
Speaker 2: a nurse, you know, she came in and she was like, oh,
16:16
Speaker 2: you know very well. I was like, oh, I don't
16:19
Speaker 2: feel very well. And then physio came. Now, as somebody
16:26
Speaker 2: who's been in and out of hospital had gosh, so
16:29
Speaker 2: many operations that I can't even begin to imagine how
16:32
Speaker 2: many lost count I know full well that you need
16:37
Speaker 2: to get moving. You need to get out of that bed,
16:39
Speaker 2: and you need to get moving. The quicker you do that,
16:42
Speaker 2: the quick you can get home, and it just you know,
16:45
Speaker 2: your recovery will be so much more quicker and smoother.
16:49
Speaker 2: So physio come along. Do you want to go for
16:52
Speaker 2: a little walk of the wood. Yeah, great, let's go.
16:57
Speaker 2: I'd literally taken five steps out of the room up
17:00
Speaker 2: towards the nursing station, and I will never forget it.
17:05
Speaker 2: I just thought, I literally can't even take a step,
17:09
Speaker 2: more like one more step, I can't do it. I'm
17:11
Speaker 2: going to pass out. And I never experienced such what
17:17
Speaker 2: would be the word that feeling that is so unwell,
17:23
Speaker 2: never experienced it with a length in all my life.
17:26
Speaker 2: And I just thought, something's not right here, something's really
17:29
Speaker 2: not right. And so obviously they shout for help. They
17:34
Speaker 2: got it back on the bed again, typical steps of symptoms,
17:39
Speaker 2: powder it through the roof, blood pressure on the floor,
17:42
Speaker 2: temperature of forty you know, And days went on. My
17:48
Speaker 2: mom came in to see me on the Friday. Now,
17:52
Speaker 2: me and my mum are really really close, really close,
17:55
Speaker 2: and I would never dream of swearing at her or
18:00
Speaker 2: shouting at her, or we probably never even had cross words,
18:05
Speaker 2: I can remember. Anyway, on that Friday she came to
18:09
Speaker 2: see me and she was stood in front of the window.
18:11
Speaker 2: The window was open, and I told her to four
18:18
Speaker 2: out of the window of the way of the window
18:20
Speaker 2: because I was so hot with the temperature. And I
18:24
Speaker 2: think my mom was like, oh, she's never done that ever.
18:30
Speaker 2: And you know when you think, oh, if I just
18:32
Speaker 2: said that, yeah, but it was out, you know, And
18:38
Speaker 2: again I just thought, I'm really not well, really not well,
18:42
Speaker 2: and so they sent me over to another hospital or
18:47
Speaker 2: a CT scan to rule out a hemotoma or an
18:52
Speaker 2: inja bell and on the scan was noted that there
18:58
Speaker 2: was a strong possibility of an inja bow that's what
19:02
Speaker 2: it looked like, rather than a hematoma, and then sent
19:07
Speaker 2: me back to the original hospital. Now, the original hospital
19:12
Speaker 2: has got no ITU. And you know that they specialized
19:18
Speaker 2: in what they specialized, but that's it. So they haven't
19:23
Speaker 2: got the resources, they haven't got the facility to rescue poorly,
19:27
Speaker 2: poorly patients basically. So I was sent back over and
19:32
Speaker 2: that was on the Friday afternoon, and again so by Saturday,
19:37
Speaker 2: now I'm really poorly typical sepsist symptoms. And there was
19:43
Speaker 2: my husband can only describe it as bright green and
19:47
Speaker 2: luminous Vomit was coming out of every single hole that
19:53
Speaker 2: you can think of. It was coming out and so
19:57
Speaker 2: down below out of the wind on my stomach. I
20:00
Speaker 2: was vomiting it. I was vomiting feces that I'll never forget.
20:06
Speaker 3: Yeah, I can't imagine you'd forget that.
20:08
Speaker 2: Just putting that out there. That was not great at all.
20:12
Speaker 2: That was not my finest hour. So yeah, and when
20:18
Speaker 2: I vomited the feces, I was like, I'm in trouble.
20:23
Speaker 2: I'm in big, big, big trouble. And I was almost
20:26
Speaker 2: drifting out of consciousness as well. But I refuse to
20:31
Speaker 2: get on that bed. So, to give a bit of context,
20:34
Speaker 2: I absolutely hate hospital beds. They're disgusting, they're sweaty, they're hot,
20:40
Speaker 2: they're really uncomfortable, and I absolutely hate them. So I
20:46
Speaker 2: will sit in a chair any day over a hospital bed.
20:50
Speaker 2: So yeah, all this bodily fluid whatever it is, pouring
20:55
Speaker 2: out of every single hole, it could think of rage
20:59
Speaker 2: and temp. You know, blood pressure was down the floor.
21:05
Speaker 2: Oh that's the typical steps of symptoms in and out
21:07
Speaker 2: of consciousness. And doctor's coming to see me. You needed
21:11
Speaker 2: just coming to see me, And so there was basically
21:14
Speaker 2: a bit of a delay in getting me back over
21:18
Speaker 2: to the specialist hospital that you know hasn't had an
21:22
Speaker 2: ITU facility. In the end, I was rushed over by
21:27
Speaker 2: ambulance on Saturday night and the consultant came down to
21:32
Speaker 2: see me on the triage ward and apparently he I
21:39
Speaker 2: me and I was out of it. I was gone
21:40
Speaker 2: by now. He had phoned up theaters and said get
21:45
Speaker 2: ready because I'm running with her now. So my poor
21:49
Speaker 2: husband was like, oh my god. It was very dramatic,
21:55
Speaker 2: possibly rightly, so ran straight to theater with me. And
22:01
Speaker 2: they actually discovered a necrotizing fasciitis. So necuatides to fasciais
22:08
Speaker 2: is like the top top end of sepsis, and it
22:11
Speaker 2: basically the the infection eats away at your your organs,
22:17
Speaker 2: your muscle, your skin eats away quite quickly. There is
22:23
Speaker 2: a very very small time frame that you either cut
22:28
Speaker 2: away all of that bacteria the they're bits, or you're
22:32
Speaker 2: gonna die. Basically, that's the that's the not of it. Really.
22:38
Speaker 2: They have said if I was under the half an
22:40
Speaker 2: hour in game over, so they obviously they operated on
22:45
Speaker 2: throughout the night. Literally they cut me open from hip
22:49
Speaker 2: to hip, top to bottom. I was cut. I brought
22:54
Speaker 2: back to what we call POCKO post offertive critical car
22:59
Speaker 2: unit it and unventilated till till the monday. I think
23:04
Speaker 2: it was back and forth to theater as well, just
23:09
Speaker 2: to check that the nequa site and fasci etors wasn't
23:12
Speaker 2: coming back or it wasn't regrowing. And so yeah, back
23:16
Speaker 2: and forth to theater from from the critical care unit,
23:19
Speaker 2: and yeah, it was. It was horrendous time, horrendous I think,
23:29
Speaker 2: you know, family and friends still talk about it now
23:31
Speaker 2: in the sense that my poor husband spent you know,
23:35
Speaker 2: three or four days literally crying. He had not stopped.
23:39
Speaker 2: And we joke about it. We've got a joke about it,
23:43
Speaker 2: and we've and we've we've got to find some humor
23:46
Speaker 2: in it, because if I'd have been able to, if
23:48
Speaker 2: I wasn't ventilated, I would be saying to him we
23:51
Speaker 2: could pack it in, stop blubbering, pack it in, get
23:54
Speaker 2: a grip. And because that the two of us, you know, mentally,
24:00
Speaker 2: and I've got more resilience, shall we say, which I
24:05
Speaker 2: think is you know, it's probably saved me, saved my
24:09
Speaker 2: arse more than more than I care to. Yeah. Yeah,
24:16
Speaker 2: So once I was brought off the ventilator, I as
24:21
Speaker 2: they were, as they were, you know, lowering the levels
24:24
Speaker 2: of the sedation. I could hear my husband blubbering and
24:29
Speaker 2: sloppering and making a right holy show of himself, as
24:32
Speaker 2: I always say, and then my sister saying, well, it's
24:35
Speaker 2: a fine way to lose some weight, because they had
24:38
Speaker 2: literally cut it all away, taking up, you know, And
24:44
Speaker 2: so yeah, it was it was like, you know, I
24:46
Speaker 2: can hear it, you can hear the conversations, but you
24:49
Speaker 2: literally cannot move. And so as I was coming off
24:53
Speaker 2: the ventilator, I just I just wanted to hug, and
24:58
Speaker 2: so I lifted my arms the hint for a hug,
25:02
Speaker 2: and the nurse was like, oh, she's going to reach
25:04
Speaker 2: and pull the thing out of her mouth. We're going
25:06
Speaker 2: to put her back under and I'm like, bloody hell, no,
25:12
Speaker 2: I'm not going to put it out. It's fine, and
25:15
Speaker 2: so yeah, and I can see it at the corner
25:17
Speaker 2: of my eye, pushing the button good night again. So yeah,
25:23
Speaker 2: another day went by, and then again I was properly
25:26
Speaker 2: taking off the reds later, and I think that's when
25:29
Speaker 2: I realized the extent of the trouble that we has
25:33
Speaker 2: been in. And you know, I certainly wasn't out of
25:36
Speaker 2: the woods, but it was looking a lot better than
25:38
Speaker 2: where it was, and you know, family were called in
25:41
Speaker 2: on a number of occasions during that week. Yeah, it
25:46
Speaker 2: was it was touch and go on a number of occasions. Really,
25:51
Speaker 2: So yeah, that was that was. It was really really hard,
25:55
Speaker 2: back and forth a theater every single day for about
25:59
Speaker 2: six weeks and I was literally, when I say, I
26:04
Speaker 2: was cut open from hip to hip, top to bottom.
26:07
Speaker 2: There is no skin there, so they literally put a
26:11
Speaker 2: piece of cling film it looks like clingfilm over your
26:15
Speaker 2: organs and you can see your organs it.
26:20
Speaker 3: Yeah, that must be bizarre.
26:25
Speaker 2: Yeah, I had no pain. I had no pain whatsoever
26:29
Speaker 2: because they've cut all the nerves away.
26:31
Speaker 3: Oh yeah wow.
26:35
Speaker 2: So it was like that for months on end, you know,
26:41
Speaker 2: every single dressing they could think of. And then they
26:45
Speaker 2: brought out the where he'd injured the bowel. They had
26:49
Speaker 2: brought that out into what was a judge, so if
26:52
Speaker 2: I had a cup of tea, it came straight out. Yeah,
26:58
Speaker 2: and obviously trying to get a bag the stick when
27:01
Speaker 2: there's no skin there. Yeah. So then as as weeks
27:07
Speaker 2: went on and you know, things started to heal over
27:11
Speaker 2: so slowly. This took weeks and weeks and weeks just
27:14
Speaker 2: so you can get a bag to stick on that
27:16
Speaker 2: on that judge where they'd cut. So then they decided, well,
27:22
Speaker 2: everything that comes out, if I have a cup of tea,
27:24
Speaker 2: it's coming straight out. So they decided that I need
27:28
Speaker 2: to go on TPM. So yeah, off I went back
27:33
Speaker 2: to theater and had the Hickman line placed on TPM.
27:39
Speaker 2: I was during I think it was last week from November,
27:44
Speaker 2: so I've been in hospital what two months now. I
27:49
Speaker 2: begged and begged and begged just to go home, and
27:52
Speaker 2: I couldn't. Mentally I was done and I couldn't, you know,
27:57
Speaker 2: And I'd spent you know, eight weeks fighting from a
27:59
Speaker 2: life life. But mentally it was at this point where
28:03
Speaker 2: I was probably the worst and sleep deprived because you
28:08
Speaker 2: know being sleeping hospitals, do you And I think I
28:14
Speaker 2: was just sick and tired, have been poked and prodded,
28:17
Speaker 2: and if it wasn't the Hickman line, it was it
28:20
Speaker 2: was my skin or lack of and things were starting
28:24
Speaker 2: to grow back, and when the nerve cells are starting
28:27
Speaker 2: to grow back, it's really quite painful. I know, pain
28:31
Speaker 2: colors really were touching it. And so yeah, mentally I
28:34
Speaker 2: was in I was not in a good place. So
28:37
Speaker 2: I backed them back to back, let me go home,
28:40
Speaker 2: let me go home, like so anyway they did, and
28:46
Speaker 2: I lasted five days, not bad. And on the fifth day,
28:54
Speaker 2: I remember, well, I'd been vomiting and just generally being
29:00
Speaker 2: very unwell and anted hearing quite quickly, and I remember
29:05
Speaker 2: messaging my mum, who was happening to be on a cruise.
29:08
Speaker 2: I mean, of course, she was, yeah, I think I've
29:12
Speaker 2: got Nora virus. She's like, oh bloody hell. You know,
29:16
Speaker 2: I never thought anything of it. Then the next day
29:19
Speaker 2: my husband couldn't wake me up. It turns out I
29:23
Speaker 2: had a sexist in the line. So yeah, quite poorly
29:28
Speaker 2: in bed, couldn't wake me whatsoever. Ambulance crew came, won't
29:32
Speaker 2: wake me, so they blue lighted me two a completely
29:37
Speaker 2: separate hospital and so not Whales, but it was England.
29:41
Speaker 2: But they had zero notes that no history, could have
29:46
Speaker 2: never even been there before, and so they will the
29:51
Speaker 2: ambulances who wheeled me into recess. Now normally family get
29:56
Speaker 2: ushered into a room, don't they, you know, take a seat,
29:58
Speaker 2: we'll come and see you in a minute. Because of
30:00
Speaker 2: the medical history, and it was so complex, my husband said,
30:06
Speaker 2: you know, the paramedics said, you're going to need him
30:09
Speaker 2: in it in recess with you to explain all of this.
30:13
Speaker 2: So for the poor husband, he was like in the
30:16
Speaker 2: middle of this recess, everyone was running around was like,
30:20
Speaker 2: you know, ten doctors and nurses together, they're just it
30:24
Speaker 2: was just chaos and you know, all working on me now.
30:29
Speaker 2: They sent me for another scan and they thought I
30:32
Speaker 2: had pelvic collections that were sceptis, not the Hickmann lime.
30:38
Speaker 2: So they continued to flush medication through the Hickmann line
30:41
Speaker 2: because my veins everyone else in my body were collapsed,
30:46
Speaker 2: and so they continued to use the Hickman line. And obviously,
30:49
Speaker 2: if anybody knows that basically flushing around the infection around
30:55
Speaker 2: in your bloodstream, around and around around anyway, So I
30:59
Speaker 2: ended up an itu. I was there for about two weeks,
31:04
Speaker 2: wasn't improving really. Every time I ate, it obviously was
31:10
Speaker 2: coming straight back out because that jedge is still there.
31:14
Speaker 2: Every time they were flushing or using that Hickman line,
31:18
Speaker 2: I would get a high temper and those steps of
31:20
Speaker 2: symptoms will come back again. Anyway, So they eventually moved
31:25
Speaker 2: me on to Award anyway, and there was just something
31:30
Speaker 2: inside me that I thought, if I don't get back
31:33
Speaker 2: to the initial hospital, the one that saved my life,
31:39
Speaker 2: and I'm going to die. Yeah, So again begging my husband,
31:44
Speaker 2: begging my mum, get me in that car and get
31:47
Speaker 2: me back over to the hospital, and they wouldn't. It
31:53
Speaker 2: was really difficult so in the end, I have no
31:57
Speaker 2: idea how I found the strength to do it, but
31:59
Speaker 2: I phoned the gastro nurses, the specialists and said, I
32:04
Speaker 2: think I'm not a doctor, I'm not a nurse, I'm
32:08
Speaker 2: not trained. I think it's my Hieman line. It's not
32:12
Speaker 2: been dressed for nearly three weeks, so it was literally
32:15
Speaker 2: hanging out. I think it's that a shoot. So the
32:20
Speaker 2: gastros nurses were like, well, if you can get over it,
32:22
Speaker 2: we'll sort it. That was like quite fine. So I
32:26
Speaker 2: literally knew my husband was coming in to see me.
32:29
Speaker 2: I walked to the main entrance, stood there until he
32:32
Speaker 2: pulled up, got in the car and he was like,
32:35
Speaker 2: what the hell are you doing? And I was like,
32:37
Speaker 2: drives Liverpool. Now. I don't know how I did this
32:41
Speaker 2: because at the time I was very very septic, very
32:44
Speaker 2: poorly actually, And I think there is something in you
32:49
Speaker 2: when you need to fight for your life, you fight
32:51
Speaker 2: for your life. And I'm a big believer on it,
32:55
Speaker 2: because there was definitely something. It was just an indescribable
32:59
Speaker 2: feeling of you've got to fight and I can't quite
33:03
Speaker 2: articulate it, but I can't really put it into words.
33:08
Speaker 2: There was definitely an underlying urge or feeling.
33:12
Speaker 3: Or definitely something that there are a lot of people
33:18
Speaker 3: who will either sympathize or empathize with you. I think again,
33:24
Speaker 3: probably saying exactly the same thing as you. That you
33:26
Speaker 3: can't put your finger on it. Yeah, but there is
33:30
Speaker 3: a feeling where you go, I'm in trouble here, yeah,
33:34
Speaker 3: and if I don't do something, if I don't fight,
33:38
Speaker 3: I'm going to be in a worse position.
33:40
Speaker 2: Yeah, yeah, absolutely, So off we went over to Liverpool.
33:45
Speaker 2: They took one look at me, they cleaned the line,
33:48
Speaker 2: they flushed it, and then all right, actually, you know,
33:53
Speaker 2: I said Neil, husband was a bit like, should we
33:56
Speaker 2: go back the hospital? And I was like, no, no,
34:01
Speaker 2: absolutely not. So I went to the war that I
34:06
Speaker 2: had been spent eight weeks on just to say hi,
34:11
Speaker 2: and it was, you know, for a couple of minutes,
34:13
Speaker 2: it's lovely. Sat They offered me a chair and then
34:16
Speaker 2: the next thing, apparently the color just went straight from me.
34:20
Speaker 2: I vomited in the nursing station. Oh I think that
34:24
Speaker 2: was a win. Sorry, And they were like, oh my god,
34:29
Speaker 2: you can't. You can't go back to the hospital. You
34:32
Speaker 2: need to go back through it and come back in.
34:35
Speaker 2: So what we did, and yeah, long and behold it
34:38
Speaker 2: was an affection in him and line as scept this again,
34:43
Speaker 2: so they kept me in. I was in then o
34:45
Speaker 2: Christmas and I had I had day visits. I came home,
34:50
Speaker 2: see the dog as McDonald's chips on the sofa. Yeah,
34:56
Speaker 2: that's wonders for your mental health. Cuddled with the dog
35:01
Speaker 2: and went back and we did that for about six months,
35:07
Speaker 2: just back and forth. Really I and I need nobody
35:11
Speaker 2: else was like, why don't you just stay in hospital now?
35:15
Speaker 2: And I can't emphasize that enough, that having that break,
35:19
Speaker 2: getting out of four walls, whether it's going to costa
35:22
Speaker 2: and you know, having a nice drink where it's going
35:26
Speaker 2: to come straight back out anyway, but do you know,
35:30
Speaker 2: just something of some normality and there's wonders. So yeah,
35:36
Speaker 2: in over Christmas with a couple of day releases, and
35:40
Speaker 2: back again on. I was on about five different antibiotics
35:45
Speaker 2: at that point, just try and clear the infection all
35:47
Speaker 2: ivy and we got there. In the end again, I'm
35:52
Speaker 2: still quite open hips to hips up to bottom, but
35:54
Speaker 2: it is healing ever so slowly. And then I was
35:59
Speaker 2: like that until October twenty twenty. So we're fourteen months
36:07
Speaker 2: in by now and we were due to go back
36:12
Speaker 2: surgery for the reconstructive surgery. So to close that jedge
36:20
Speaker 2: release all the adhesions, just basically tied it all because
36:23
Speaker 2: it was an absolute mess. Just before they did that
36:26
Speaker 2: reconstructive surgery, they did another of r E scam and
36:32
Speaker 2: it actually discovered that my floaping tubes were never removed.
36:39
Speaker 3: Yeah, it's tough pill to s follow, bombshell.
36:43
Speaker 2: Yeah, and actually there was a high risk of having
36:48
Speaker 2: to have a hysterectomy during that reconstructive surgery. So back
36:54
Speaker 2: to the Rarey Initial Specialist Specialist Hospital for two rounds
36:59
Speaker 2: of five VF fertility preservation. So I'm on TPN, I'm
37:04
Speaker 2: on antibiotics, and now you're going to throw me on IVF.
37:10
Speaker 2: I did it. I did it somehow, So I've got
37:15
Speaker 2: all these Yeah, it's unbelievable.
37:17
Speaker 3: It is.
37:18
Speaker 2: I believe that it is mad. It is. And I
37:22
Speaker 2: guess what you can throw at the body and the
37:25
Speaker 2: human body keeps on taking it and taking it and
37:28
Speaker 2: taking it, And here I am. But yeah, so, surprise, surprise,
37:32
Speaker 2: we had really low numbers from the IVF and we
37:38
Speaker 2: had three embryos in all, but they were put in
37:41
Speaker 2: the freezer. It was sort of put to bed because
37:43
Speaker 2: we're in no position to follow that through right now.
37:47
Speaker 2: And then literally a week later off I went into
37:50
Speaker 2: back into a hospital for the reconstructive surgery and unfortunately
37:56
Speaker 2: we just hit COVID so novis and so I went
38:02
Speaker 2: through that all by myself, and the morale in the
38:05
Speaker 2: hospital was Jesus, it was horrendous. It was absolutely taking
38:10
Speaker 2: my heart off to them. Yeah, horrendous. So I had
38:17
Speaker 2: the facility, I had the facility preservation done, I had
38:20
Speaker 2: the reconstructive surgery done, and I didn't have hysterectomy, but
38:25
Speaker 2: they managed to remove one floating tube but they couldn't
38:29
Speaker 2: get to the other one because it was just so
38:31
Speaker 2: mangled in adhesion. It was such a mess in there,
38:34
Speaker 2: and so it wasn't clipped either. So one is remaining
38:41
Speaker 2: and unclipped and one is out gone. But it's a mess, absolutely,
38:47
Speaker 2: it shit showing there. So I recovered from that and
38:53
Speaker 2: then off TPN. So we thought great, right, life can
38:59
Speaker 2: sort of get to normality now. Naively, and we thought
39:02
Speaker 2: we were done, it's all done and better. I just
39:05
Speaker 2: need to recover type thing. It's all good. And I
39:09
Speaker 2: eat him, which was which was huge. Do you know what,
39:13
Speaker 2: I take my health too. And I envy anybody who's
39:16
Speaker 2: on TPM for life because food is such a massive
39:21
Speaker 2: part of our culture, our identity socially, it's foods everything,
39:26
Speaker 2: isn't it. I am a big foodie. So yeah, the
39:33
Speaker 2: life on TPN is really really difficult in every way.
39:37
Speaker 2: So when they did the reconstructive surgery and they put
39:39
Speaker 2: everything back together and they said you can eat great.
39:44
Speaker 2: So New Year's Day came along and my mom said,
39:49
Speaker 2: let's do a big buffet. I was like, yes, food,
39:53
Speaker 2: proper food, and so potentially did I over eat maybe?
40:01
Speaker 2: And the next day I woke up and I thought
40:04
Speaker 2: I'm in a lot of pain, but I couldn't quite
40:06
Speaker 2: figure out where it was coming from. And then so
40:10
Speaker 2: as the morning progressed, got to about lunch time and
40:15
Speaker 2: an overwhelming, quite urgent feeling to vomit. So it's the toilet.
40:20
Speaker 2: Vomited and on the way back from the toilet, collapsed
40:24
Speaker 2: in the hallway with horrendous pain. I thought I was
40:28
Speaker 2: on the heart attack. I was convinced, And so the
40:31
Speaker 2: pain was radiating up to my chest down to my
40:34
Speaker 2: arm into my jaw, and when I'm lying on that
40:38
Speaker 2: in the hallway, thinking Jesus and money like the tip. Honestly,
40:43
Speaker 2: I thought I'm going to pop the clogs with a
40:46
Speaker 2: heart attack. Just been through all of that, you know,
40:49
Speaker 2: in jaboo and aquatize the fasciaitis. It's going to be
40:52
Speaker 2: a heart seize me off. So yeah, husband calls an
40:57
Speaker 2: ambulance again and off I into any crime COVID time.
41:04
Speaker 2: I was literally in majors with COVID patient next to me,
41:10
Speaker 2: COVID patient next to me on that side, and a
41:12
Speaker 2: COVID patient opposite me, and I am diagnosed with acute
41:16
Speaker 2: necrotic ancrotitis. Oh yeah, very very painful, yes, agony, And
41:27
Speaker 2: again apparently you can be quite poorly with pancretitis and
41:32
Speaker 2: we'll never quite know because I then call COVID, So I, yeah,
41:37
Speaker 2: so I have pankatitis and COVID at the same time,
41:41
Speaker 2: so we'll never actually know which which was causing more
41:46
Speaker 2: senses than the other. So yeah, Following that, a sort
41:53
Speaker 2: of recovered enough. I think I was in about two
41:57
Speaker 2: weeks again, no visitors whatsoever. Prime of its time covered
42:03
Speaker 2: sent home with the referral going back over to Liverpool
42:08
Speaker 2: for the pancreas specialist to see me. Clinic saw me
42:13
Speaker 2: about a week later in clinic and he was he
42:16
Speaker 2: I remember the look on his face. He was like
42:18
Speaker 2: looking at the scam picture on his computer and looking
42:21
Speaker 2: at me and he was like, that'll just not go.
42:24
Speaker 3: Dear.
42:25
Speaker 2: So I had lost some to five percent of pancreas
42:29
Speaker 2: and the tail of the pancreis is disconnected, and so
42:34
Speaker 2: the picture of the scam looked horrendous. But yeah, I
42:36
Speaker 2: was walking into clinic the famous like what and you
42:45
Speaker 2: know I did say to my little feel very well,
42:48
Speaker 2: I feel quite Yeah. He was like, right, you're coming in.
42:51
Speaker 2: I was like, oh no, no, no, no no. I've
42:54
Speaker 2: spent far too many months of my life here. No no, no, no no.
42:58
Speaker 2: I was like you're coming in. H So yeah, and
43:05
Speaker 2: so that's where I went. But back up to the
43:06
Speaker 2: ward and they did numerous endoscopy procedures. In the end,
43:14
Speaker 2: they put a stent in into the pancreas between the
43:17
Speaker 2: pancreas and the stomach. So at all the bacteria and
43:23
Speaker 2: the juices of pancreas called flowing to the stomach rather
43:27
Speaker 2: than building up. Yes, because it's collected so much of
43:33
Speaker 2: dead tissue and bacteria. It was squashing my stomach, so
43:36
Speaker 2: I wasn't able to eat. It squashed my stomachs to
43:40
Speaker 2: be tiny. So yeah, I had that done. The covered
43:44
Speaker 2: door ride from that, and then I went during the
43:48
Speaker 2: summer of that year. So we're now twenty one and
43:52
Speaker 2: I don't know how I did this, but I completed
43:55
Speaker 2: my last year of my social work degree placement.
44:00
Speaker 4: Yeah, I mean decree, no idea, no idea, And I
44:09
Speaker 4: remember days, and there were more days than that I
44:12
Speaker 4: slept on my desk, you know, keeled over just recovering.
44:19
Speaker 2: Really, I mean, I've thrown so much at my body
44:23
Speaker 2: and I think it was just it was. It was.
44:26
Speaker 2: I was knackered. I was absolutely knackered. And then yeah
44:32
Speaker 2: it was it was really really hot. Blood did it.
44:34
Speaker 2: I got through it. I don't know how blooded. And
44:37
Speaker 2: and then October twenty one, we're back in my girld
44:42
Speaker 2: bladder out. So just to give a bit of context,
44:46
Speaker 2: it was the tipm course to gallstones. The gallstones caused
44:52
Speaker 2: the pancretitis, and so the good bladder nearvis come out. Okay,
44:57
Speaker 2: so god bladder was out and October twenty one and
45:02
Speaker 2: we thought, right, okay, surely that's it now, you know,
45:09
Speaker 2: recovered from the gul bother coming out, and again it
45:12
Speaker 2: was you know, it was an opis still an opips,
45:16
Speaker 2: but covered quite quickly. So in the January, where are
45:21
Speaker 2: we now? Twenty two? We thought, this is the best
45:24
Speaker 2: I'm going to be. Let's defrost those little ambrose that
45:30
Speaker 2: we made and try and then plant them and transfer
45:34
Speaker 2: them into me. And so we did that. We did
45:38
Speaker 2: two rounds, and then we realized that there was still
45:42
Speaker 2: fluid within my womb. So the only way that fluid
45:46
Speaker 2: was in my womb was because of that one flopian
45:50
Speaker 2: tube that was unclipped. So this I think we're about
45:56
Speaker 2: early spring now. And that words clinic consultation that I've
46:02
Speaker 2: ever had in my life, and you know, PTSD level
46:08
Speaker 2: with the words you will never be able to carry,
46:10
Speaker 2: you will never have an embryo survive in that womb,
46:14
Speaker 2: and basically give up now you yeah, you won't ever
46:20
Speaker 2: have your biological child and you certainly will never be
46:24
Speaker 2: able to carry a baby to full turn. Yeah, that
46:29
Speaker 2: was that was horrendous, Probably the lowest I've ever been. Yeah,
46:34
Speaker 2: I went off sec from work for about six weeks.
46:38
Speaker 2: Just to get my head around it. Lots of therapy
46:40
Speaker 2: and counseling and yeah, yeah, just to get just to
46:45
Speaker 2: get my head around it. Really, they refuse to do
46:49
Speaker 2: another red collection because of the risk of the adhesions.
46:52
Speaker 2: It's just it's just a mess in there. So, you know,
46:57
Speaker 2: I'd never have biological anyway. So my sister offered to
47:02
Speaker 2: donate her eggs. Unfortunately, we had one embryo on that round.
47:09
Speaker 2: I mean, she's she's five or six years older than me,
47:12
Speaker 2: So scary. How your egg reserve diminishes over four or
47:19
Speaker 2: five years. It is frightening. And yeah, anyone listened to
47:23
Speaker 2: this who thinks they've got all the time in the
47:27
Speaker 2: world to have, you know, a baby, perhaps look into it.
47:31
Speaker 2: It's you know, it's not it's not the same for everybody,
47:35
Speaker 2: but it is frightening. How how quick that diminishes at
47:38
Speaker 2: the time you're thirty nine and forty.
47:40
Speaker 3: It's frightened worth knowing, though, I.
47:42
Speaker 2: Guess, yeah, absolutely. In my naivete, I was like, oh, yeah,
47:46
Speaker 2: it'll be fine. It's the problem. So we tried to
47:51
Speaker 2: implant that embryo of the donated one into a surrogate,
47:56
Speaker 2: and unfortunately that failed. So yeah, we're back to no embryos. Okay,
48:05
Speaker 2: they're in the pipeline. But you get to a point
48:08
Speaker 2: where you think, is there something or someone telling you
48:12
Speaker 2: just to stop stop?
48:16
Speaker 3: I think it's difficult. I think it's difficult to think
48:18
Speaker 3: like that, isn't it. It's difficult to but totally natural
48:22
Speaker 3: to you know, this is fair, this is fair, this
48:25
Speaker 3: is fair. That is it a universal sign? But I
48:28
Speaker 3: depends what you believe in and how you believe.
48:30
Speaker 2: I guess, yeah, And every doctor I speak to and
48:37
Speaker 2: they go, what you've survived necretized and fasciitis. Yeah, yes
48:42
Speaker 2: I have, so in that sense, I'm the luckiest person
48:48
Speaker 2: to survive that, but so incredibly unlucky to have necritized,
48:54
Speaker 2: a factus, necrotic, a pancretitis, So normally it'll go together.
49:01
Speaker 2: So yeah, it's very very difficult five or six years really,
49:07
Speaker 2: so complications from all of that. I mean, and naively
49:12
Speaker 2: I thought, you know, I'd recovered from from each of
49:15
Speaker 2: these things, we'd get them in the end. But actually
49:22
Speaker 2: I have chronic pancretitis. I have delayed dumping syndrome. Basically,
49:29
Speaker 2: the your pancreas releases the sugar the insulin and doesn't
49:34
Speaker 2: match the time that the food reaching your stomach, so
49:38
Speaker 2: presents like hypos and I hypos are quite significant. They're
49:42
Speaker 2: two's low threes, so at the moment, unable to work,
49:48
Speaker 2: too high risk apparently.
49:51
Speaker 3: To work.
49:52
Speaker 2: It's it's really very difficult bio acid malabsorption, the fatigue
50:00
Speaker 2: that's come through from from the past five six years,
50:04
Speaker 2: and uh, it's a bit of a mess.
50:08
Speaker 3: That's Yeah. That's such a fascinating story though. And I
50:13
Speaker 3: have so many, so many questions and so many things
50:16
Speaker 3: to ask you, but I guess one of them would
50:21
Speaker 3: be are you. I know you talked about the strength
50:24
Speaker 3: of the human body and human mind. Are you. Did
50:27
Speaker 3: you surprise yourself at just how strong you are physically
50:33
Speaker 3: and mentally?
50:35
Speaker 2: Yeah? Absolutely. I mean if we go back to being
50:40
Speaker 2: transferred from the initial hospital over to the second hospital
50:45
Speaker 2: and that Saturday, and when they wheeled me into the lift,
50:49
Speaker 2: I had this overwhelming feeling of I am in a
50:53
Speaker 2: world of trouble here, but you're too sick to even
50:58
Speaker 2: verbalize it.
51:00
Speaker 3: That makes sense, kind of paralysis as such.
51:03
Speaker 2: Yea, And you lie there and you think, and you
51:10
Speaker 2: something inside you is almost begging that the health system
51:15
Speaker 2: or saves.
51:17
Speaker 3: Your ass literally pretty much.
51:19
Speaker 2: Yeah, yeah, save your ars big time. So yeah, there
51:25
Speaker 2: were a number of occasions where I thought, this is it,
51:31
Speaker 2: this is it, and then and then there's a there's
51:35
Speaker 2: a rush, whether it's adrenaline or what, I don't know,
51:39
Speaker 2: picks in and you you literally fight for your life
51:43
Speaker 2: without physically fighting for your life, because you know what
51:46
Speaker 2: I mean, you're too sick to physically fight, so you
51:50
Speaker 2: mentally fight. Yeah.
51:53
Speaker 3: That makes sense, That makes absolute sense. And I'm sure
51:56
Speaker 3: there's a lot of people listening who will again and
51:59
Speaker 3: resonate with that and think, yeah, and I know, I
52:02
Speaker 3: know exactly what you're talking about. There'll be some people
52:04
Speaker 3: that go, I haven't got a clue what. Yeah, but
52:07
Speaker 3: that probably because they haven't necessarily had to go through
52:11
Speaker 3: what anything like what you've been through, and luckily for them,
52:16
Speaker 3: But now I do I get exactly what you mean
52:19
Speaker 3: with that as well. And I know you mentioned your
52:22
Speaker 3: husband and how just how supportive he's been in terms
52:27
Speaker 3: of how many times he's called an ambulance and this,
52:30
Speaker 3: that and the other. I mean, how I guess, putting
52:33
Speaker 3: it in your own words, how supportive has he been
52:36
Speaker 3: to you?
52:38
Speaker 2: Oh? But absolutely I wouldn't. I probably wouldn't be here
52:40
Speaker 2: without him, both physically and mentally. And you know, we
52:46
Speaker 2: had only just got married in twenty nineteen in the summer,
52:50
Speaker 2: and so our whole married life has been He's not
52:55
Speaker 2: really my husband, he's my care And how those dynamics
52:59
Speaker 2: change change, and the dynamics change with your friends, your family, husband, wife, whatever.
53:09
Speaker 2: When something like that happens, it it is literally life changing.
53:15
Speaker 2: And I guess you need a lot of you need
53:18
Speaker 2: a lot of therapy to try and process all of that.
53:20
Speaker 3: Really, yeah, huge, huge, And the therapy itself, how beneficial
53:27
Speaker 3: was was that to you?
53:29
Speaker 2: Do you know what? I'll put my hands up. When
53:34
Speaker 2: my GP initially referred me to Community of Mental health,
53:39
Speaker 2: generally very low mood, and I was having nightmares pretty
53:45
Speaker 2: much every night, waking up sweating, and daily, I was
53:50
Speaker 2: having reseeing POKU, which is the post optive critical care unit.
53:58
Speaker 2: I was re seeing the event that unfolded there, which
54:02
Speaker 2: were horrendous. I wouldn't wish that I'm a with enemy.
54:07
Speaker 2: So I was diagnosed with chronic patistic and I had
54:13
Speaker 2: the flashbacks were Actually OKU was a four bedded room
54:19
Speaker 2: and there was no no windows, so didn't know whether
54:22
Speaker 2: it was day or night really, and the only realized
54:26
Speaker 2: for me was the shift changeover. That was the only
54:31
Speaker 2: way that I could vaguely figure it out. And so
54:36
Speaker 2: the other three beds, obviously there were people ventilated, and
54:43
Speaker 2: I thought they were all dead and I was, and
54:48
Speaker 2: I thought that the nurses thought I was dead.
54:54
Speaker 3: Okay, yeah, okay, but I wasn't.
54:56
Speaker 2: I was. I was definitely alive. I I remember leaving
55:01
Speaker 2: the other hospital and the next thing I knew was
55:03
Speaker 2: I was in this pocket. But I am alive, but
55:07
Speaker 2: they don't, but they think I'm dead.
55:10
Speaker 3: So yeah, yeah, kind of process that is mind boggling.
55:16
Speaker 2: Yeah. And if I don't make them realize that I'm alive,
55:22
Speaker 2: They're going to push me to that fridge and then
55:24
Speaker 2: I'm going to die in the fridge. So that's when
55:28
Speaker 2: you talk about mental resilience, that there is that there
55:34
Speaker 2: is that an overwhelming urge to fight. And I was
55:38
Speaker 2: absolute pain in the ass patient because I thought if
55:42
Speaker 2: I wasn't a pain in the ars patient, I was
55:45
Speaker 2: going to end up in the fridge.
55:47
Speaker 3: Right.
55:48
Speaker 2: So you've got and you can't get out of this
55:50
Speaker 2: bed because they've got these stupid railings up so you
55:53
Speaker 2: can't get out. It's about ninety degrees up there, absolutely sweltering.
55:58
Speaker 2: And it didn't matter how many times I said to
56:01
Speaker 2: the nurse what happened, what's gone on? I must have
56:03
Speaker 2: asked her about fifty times in the space of a shift,
56:06
Speaker 2: blass her. And so when she went on a break,
56:11
Speaker 2: and know the nurse was looking after me, and do
56:13
Speaker 2: you know the pain button that you give him?
56:16
Speaker 3: Yeah? Yeah, I was more banging.
56:19
Speaker 2: Yeah, I was banging that on the railings of the bed.
56:23
Speaker 2: And I did that all night long and all day
56:27
Speaker 2: long because I thought if I stopped banging that they're
56:32
Speaker 2: gonna think I'm dead, Okay, I was.
56:35
Speaker 3: I was a nightmare, yeah, I mean, yeah, I won't lie.
56:40
Speaker 3: That sounds that sounds like a nightmare.
56:42
Speaker 2: Yeah. And so then when they obviously that's twenty four hours,
56:47
Speaker 2: it had staying pocketing because they'd given me a drug,
56:51
Speaker 2: and that they'd asked my mum, what's my pain threshold?
56:55
Speaker 2: Like a mum had said, terrible, give her everything under
56:59
Speaker 2: the sun. Obviously it sent me. Yeah, wherever they gave me,
57:06
Speaker 2: I don't know. I think it was keutt them in,
57:08
Speaker 2: but I'm not sure. So once I had come down
57:12
Speaker 2: off that. They then sent me over to Hdu and
57:16
Speaker 2: the transfer from Poku to Hdu again, I was convinced
57:21
Speaker 2: I'm going to the fridge. So, bearing in mind i
57:25
Speaker 2: am cut open from hip to hip, top to bottom,
57:28
Speaker 2: I decided the only way to make sure they know
57:31
Speaker 2: that I'm alive in my ketamine brain was the stand
57:36
Speaker 2: up on the bed. Oh literally, moving down the corridor,
57:40
Speaker 2: I stand up. So they're like, sit down, lie down,
57:44
Speaker 2: get back on the bed. I'm like no so and
57:48
Speaker 2: I remember the porter looking at me going just carry
57:51
Speaker 2: on because they only had to turn around the corner
57:55
Speaker 2: and we were there. So I'm stood up on this bed,
57:59
Speaker 2: cuto from hip to hip, hop to bottom, no pain
58:01
Speaker 2: because I'm off my face on ketamine. I'm not going
58:05
Speaker 2: to the fridge. Please don't take me to the fridge.
58:07
Speaker 2: They're like what what? Yeah? And then once I was
58:14
Speaker 2: in Hdu, I thought they were still trying to kill me.
58:20
Speaker 2: I was gonna die. I'm still going to end up
58:22
Speaker 2: in the fridge. I even thought that my husband had
58:25
Speaker 2: like a secret camera up his nostrils. I was absolutely
58:29
Speaker 2: off my rocket on cat jest. Yeah, and that's where
58:36
Speaker 2: the PTSD comes from. It was about thirty six hours
58:40
Speaker 2: of pocket and HDM. So yeah, So when I d
58:47
Speaker 2: had a therapy, they referred me for emd R, which
58:52
Speaker 2: is the rapid eye movement therapy. You basically follow a
58:55
Speaker 2: light and it goes faster while you're replaying the trauma.
59:00
Speaker 2: And when they first referred me, I thought, this is
59:04
Speaker 2: going to be a load of this is not going
59:07
Speaker 2: to work. Absolutely changed my life. It was a hard,
59:13
Speaker 2: hard sixteen weeks of therapy, and there were there were
59:19
Speaker 2: sessions when I thought I can't do yesterday, and I did,
59:22
Speaker 2: carried on, you know, didn't miss a session, and by
59:28
Speaker 2: say week twelve, flashbacks have completely stopped. The nightmares had
59:33
Speaker 2: completely stopped. There was nothing, nothing. I can go back
59:37
Speaker 2: to that memory now and I'm fine. I've got no
59:42
Speaker 2: physical reactions to it when I described that memory or
59:46
Speaker 2: that time, I'm fine. But yeah, those nightmares they were finished.
59:53
Speaker 2: It was gone after about week twelve. So yeah, highly
1:00:00
Speaker 2: highly recommend dr Highly recommend it. I'm counseling to process,
1:00:07
Speaker 2: you know, enable to carry a child and not being
1:00:10
Speaker 2: able to have a biological child. Lots of therapy and counseling.
1:00:14
Speaker 2: I'm in a completely completely different place to to where
1:00:18
Speaker 2: I have been in part of the last five years.
1:00:21
Speaker 3: It's brilliant. No, that's absolutely fantastic, and I'm I'm I'm
1:00:25
Speaker 3: so glad for you that that the what the therapy
1:00:31
Speaker 3: was supposed to do, did its job, and that's that's fantastic.
1:00:35
Speaker 3: That you're in a much better space, much better space
1:00:38
Speaker 3: now because as we've sat here and talked for the
1:00:40
Speaker 3: last hour or so, you have been through the ringer
1:00:43
Speaker 3: and sub So the fact that you have been able
1:00:49
Speaker 3: to process that, I think is amazing and kudos to
1:00:53
Speaker 3: you on that.
1:00:54
Speaker 2: Thank you. Yeah.
1:00:55
Speaker 3: Yeah, I think just as we wrap up here as
1:00:59
Speaker 3: well in terms of the future for you, so you
1:01:05
Speaker 3: said you're you're in a bunch better space. Now, what
1:01:08
Speaker 3: would you like the future to look like?
1:01:14
Speaker 2: I want a camper van?
1:01:16
Speaker 3: Nice?
1:01:17
Speaker 2: Yeah, because actually, if anything, the last five years has
1:01:22
Speaker 2: taught me, it's life to bloody short and it could
1:01:26
Speaker 2: literally be put in the fridge game over. Yeah, you know,
1:01:32
Speaker 2: and so life is too short, and I just think
1:01:35
Speaker 2: you need to live it. You know a lot of
1:01:38
Speaker 2: people say live it like tomorrow's never promise and all
1:01:42
Speaker 2: of that, but actually I'm a firm, firm believer that
1:01:46
Speaker 2: it could be and so I would like camper Van.
1:01:51
Speaker 2: I would like to go back and work with some dogs,
1:01:55
Speaker 2: and dogs is my passion and I love dogs, yeah yeah,
1:02:02
Speaker 2: all breeze, all sizes, and I love to see dogs
1:02:08
Speaker 2: work and using their nose, using their brains, dogs just
1:02:12
Speaker 2: being dogs and living their best life. Really, however that
1:02:16
Speaker 2: looks like so maybe in the future.
1:02:22
Speaker 3: Yeah, definitely, but I can't see why not be great.
1:02:26
Speaker 3: But now I just want to say thank you so
1:02:28
Speaker 3: much for doing this with me today and for sharing
1:02:32
Speaker 3: your story, because it's been absolutely amazing. So thank you,
1:02:37
Speaker 3: Thank you ever so much, and I wish you all
1:02:40
Speaker 3: the best in the future.
1:02:41
Speaker 2: Thank you very much.
1:02:45
Speaker 1: Thank you for listening to the podcast. Find us on
1:02:48
Speaker 1: Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous episodes
1:02:54
Speaker 1: on Spotify by searching Tom's Hirshbruns.
1:02:56
Speaker 3: Podcast fourteen fourteen fourteen