AcroTales
AcroTales
Episode 19 - Roz
Roz was diagnosed in 2005 after a succession of symptoms that had been present since her teens. Roz's journey has not been easy and had her third round of surgery only six weeks ago! (March 2024). However, Roz faces her Acro-challenge with a great sense of humour and is now a Volunteer Ambassador for The Pituitary Foundation, proving that every cloud has a silver lining.
We also discuss how vital it is to have a competent Endocrinologist and touch upon the current state of the NHS.
Hello and welcome to AcroTales, the podcast that explores the fascinating world of acromegaly. Acromegaly is a rare condition caused by a benign tumor in the pituitary gland causing an excessive release of growth hormones. My name's Dan Jeffries, and I was diagnosed with acromegaly in 2007. And in each episode of AcroTales, I'll be talking to fellow acromegalics from around the world about this unique condition and the journey that they've been on. It's episode 19. I'm very pleased to welcome Roz from Essex and various other parts of the UK. Roz was diagnosed with Acromegaly in 2005. Ros, welcome to the show. Thank you very much. It's great to be here.
SPEAKER_01:So as I'm sure listeners of all your other series of these will will know, it it was a winding road to diagnosis. And it wasn't an easy one. It took many years, even though I was diagnosed in my twenties, it was a long road to diagnosis. I looking back, I had signs for a long time. So piecing it together, I had joint problems as a child. I had really bad back pain. I was always seeing an osteopath or physio or somebody for sort of back pains, and it ranged from growing pains to something else to something else, and I just kind of accepted that just joint pains was something that I had. And then as I kind of got a bit older, just other things that you just think are part of puberty, but you should have got over it by now. So really oily skin, um ridiculously oily skin and excessive sweating, which is really not good when you're kind of late teens and you think everyone else is getting over this, and I get mine's getting worse, much, much worse. Um other things, things such as, as particularly for a girl, um, you know, dark coarse hair growing, which you're just mortified by and you don't know what's causing it. Um, my sister, whenever I shared a room with her or anyone else, just was like, Oh my god, your snoring is just intense, you know. So various bits and pieces that that came along. So they sort of all felt like I I don't know, I was just continuing with puberty a lot longer than everybody else. It was, it was really unhelpful. And then gradually other things started to happen that were completely for me unrelated. So I used to be a mezzo soprano singer, I loved my singing, I was in choirs, I was doing lots of solo work, um, and I did a recital in a church to raise money for for the church roof. And after the recital, everyone said, Oh, that was amazing. And what me and my singing teacher had a chat, and she was like, There's something not right. There's something really not right, there was something going on with my voice. And very quickly, having noticed that, I went from, for those in the musical world, I went from always the three-octave range to four or five notes, and my voice dramatically dropped. It's quite like people would think I'd be a tenor nowadays, they wouldn't certainly wouldn't hurt me as a soprano. And so I went, for example, um, just to go and see someone, and I ended up seeing an ENT specialist who so cameras down your nose to see what's happening with your vocal cords, and they couldn't quite work out what was going on, it just seemed a bit weird. So that was probably late teens, sort of 18, 19, maybe into my very early twenties. So that's was one thing that happened. The other thing that happened is is real pain in my fingers and hands. So if I woke up in the morning, if I wake up when I woke up in the morning, just things like opening and closing my hands, just really it was really stiff, it really hurt. And walking, like getting up and walking to the bathroom, I was like, my feet really hurt. It was you know painful to walk. It gradually goes throughout the day, and lots of people said, Oh, it's just water retention, which is probably not a normal thing to say to a woman in their twenties having water retention. So I had that and and that sort of that got worse to the point where um in between my uh I think between an Easter and the summer of a graduation, I've got some photos that I'm gonna send through to you, and people in the acro world will look at the photos and go, wow, that's you know, you can see uh see it coming. But between the Easter and the June when I graduated, I'd bought a beautiful pair of shoes um in at the Easter and I couldn't fit the front of my feet into them by the June. I mean, I it was as though I'd bought a pair of shoes six times too small. I mean, what what on earth was I think? I've got big feet anyway, I've got like size seven feet. So the notion that I couldn't fit the front of my feet into them. And so that was, and then so with that, with the joints with the water, you know, people think it's well, I went to see a rheumatologist. So they tested my joints, I they thought I might have rheumatoid arthritis, but again, they just couldn't work out that something just wasn't right with it. So I'd seen an ENT specialist, uh, and then I went to see uh a rheumatologist about that, and I'd um sort of those kind of areas. I did have headaches, but they were really weird headaches. They only happened really when two things happened. If I laughed hysterically, so something really captures you and you can't catch a breath and you're really laughing, I would get what my friends called a ROS headache. I'd have to stop myself from laughing, I'd have to take myself away. Just an intense headache that I thought was going to cause my head to explode. And the other time it happened is going up and down in a plane. So the change in pressure of a plane, and one time I was coming up, I can't remember where I was coming back from now, the stewardess came over to me and said, Are you okay again? Just this really intense pressure in in my head. But it didn't happen all the time, it just happened at those two occasions.
SPEAKER_00:So laughing and flying, which unfortunately are things quite Yeah, that's and laughing, you know, that's that's really unfortunate because you've got to you've got to try and curb a natural you know uh reaction.
SPEAKER_01:That's really it was uh that was really hard, but I and I because they only happened then, I kind of didn't really you don't think anything of it, you just think that's a bit weird. And then so the Aurelius skin and hair continued, and and again, it was one time I went to see a beautician, because I was at one and asking, Can you do something about this? And it was actually one of these people who turned around and went, You do you know this isn't normal? She said, you know, you're not you you don't come from from Spain or or somewhere where dark, you know, dark hair and dust, and you don't have that. You're you're not she said, you should go and see someone. Have you thought that you could have polycystic ovarian um syndrome because of what's happening? So I again I ended up going to see someone about that. So my GP went to see someone about that. Um and my GP through this um as I was in my 20s was phenomenal. Constantly, I said, I'm coming to you again about something. I'm so sorry, I I must feel like like such a hypochondriac, and she said, No, you're not. I can I can see these things going on, so she preferred me here, there, everywhere. And she was really good at sort of saying this there's definitely something wrong. Um, and the one thing that I think caused me to to to really force up the up the ante with this is um I started um I started it's not great things, I started to have lactation, which in my early 20s I definitely had not had a child without noticing. So I knew that I knew that this wasn't normal, and I was convinced I had something like breast cancer. I was absolutely convinced. And I went to my I went to my GP and said, I'm either a hypochondriac or I'm dying. And she said, You're neither, we will get to the bottom of this. So she was absolutely adamant that there was something wrong, and she kept going for test after test after test, went for all sorts of exploratory you know, things which are just unpleasant, you know, um internal ultra cells to check if it really is polycystic ovarian, if they've missed something, all of these kind of things. And eventually, as we know, in the acromegaly world, it was one test that took place. Uh it was just one. It was the IGF-1 test, it was a blood test. It was um I had the um glucose tolerance test later, but it was one test. And I had family actually who work in the endocrinology world, and my aunt, which the IR they'll probably watch this, and I don't hold them responsible for not knowing, honestly, but because they're also kind of it's really rare. Why on earth? I mean, it's so unlikely, isn't it? That I was Yeah, yeah, yeah, of course. So they asked me, you know, what was your IGF one level? We'll come back to the hideousness of some clinicians later, but just on this, uh I asked the clinician when I'd had my test done what was my IGF level, and he said, We'd we'd I don't know, there the scale doesn't go high enough. It was so off the chart. And so that was that. The moment you get that diagnosis, and actually, it was my GP who'd got the test result first. So she called me in and I saw my GP first, which was brilliant for me because I'd had this relationship with this GP. And she said to me, Now I know what it is, it's something called Acromegli. Do not Google it. Whatever you do, don't Google Acromagly. And she was brilliant. She handed me the leaflet of the Petitry Foundation, which I think they must only have been going for five years because they're just celebrating their 30th anniversary, so they they would have been going five years, and the literature was absolutely fantastic, and I was able to tick off pretty much every one of the symptoms of them, and suddenly your whole world comes around and goes, This is the answer.
SPEAKER_00:It sounds awkward to turn around and say, Yay, I've got a really rare condition which is caused by a tumour, but it is that just that is a very that is a very, very natural reaction. It's exactly one that I went through. You finally have an answer, yeah, you can finally do something about it. It is a moment of elation. You nobody wants to be ill, but it's worse to be ill and not know what it is.
SPEAKER_01:Absolutely, and it was great. And I had a lot of friends who were mortally embarrassed by the fact that um I'd been a bridesmaid at a uh of a friend's wedding, and um getting shoes was awful. She said, Oh, are you and your Frodo feet? I mean, it was yeah, and then she was like, Oh god, well I said that you had Frodo feet and you've got a tumour. I was like, it's fine, it's all good. So and then and then, of course, things happen really quickly. Suddenly, all the clinical professionals rally round you and you have all your um oral glucose tolerance test, which is the good one, the insulin stress test, not so pleasant, but you know, you know, have all that all the MRI scans, all of that, and it all comes together, and you get all the details. And one and the reason why I had the headaches is because my pituitary tumour goes into the caverna sinus, so it didn't affect my eyesight, but it was in the really small space. So if I did anything that caused any kind of swelling in that small area, it's why I got the headache. So it was fantastic. I missed all but it was fantastic getting the the diagnosis, and quite rapidly um I had a eventually had a great consultant. So my first consultant that I saw, and obviously I won't name names here, but he was really dismissive of it. Um not dismissive is probably the wrong word, but it was almost as though and he hadn't seen lots of them because uh you people don't see lots of them. And he it was when I said, What was my IGF one level? Because my family member had said what's your IGF one level. He had been late for the appointment, 20 minutes late, said you outcast said, What's my IGF one level? And he went, Oh, expert are we? And turned it round, showed me, and he said, I but I don't know what this means. Oh, sorry, so you're not the expert after all. And he was just awful. And from that moment, the first thing I did, which I would recommend to everybody, is I contacted various people who knew it and said, Find me an endocrinologist who I can talk to, because I cannot work with this person. So I ended up with a brilliant team in in Salford, um, in Manchester. Uh I I lived off in the northwest for a long time, and so I've got an identity issue living in Essex. I don't quite know what I am. Um, ended up with a really brilliant team. And I had to say, from a female perspective, I I had two brilliant female endocrinologists, and that was fantastic because you're able to talk about those. So changed immediately to great consultants who were fantastic and taught me through it. Quite quickly, the decision, I think they had me on some medication for a few months, but very quickly, we're like, we need to operate on this. Um, so I ended up having my first surgery as the beginning of December 2005, um, at Salford in Manchester, and uh went in, had the surgery, came out. Two days later, I was shopping in Marks and Spencer's and bought a pair of size seven shoes. It was just amazing and felt really weird, but my hands, I kind of had this excess skin on my hands where things had kind of reduced.
SPEAKER_00:I mean, it happened really Yeah, yeah, yeah, yeah. I I went through all of that as well. It's very strange.
SPEAKER_01:So I had that, and then however, within a few days, the surgeon phoned me up and said, We didn't get it all. I'd had some tests, we didn't get it all. We're gonna go back in. And they went back in two weeks later, on the 23rd of December, which for my family, let's be honest, was a bit rubbish. Mostly because most Merry Christmas. So mostly because most of my family live in the south, so that caused all the family to have to come and stay stay with my aunt and uncle. So they were delighted that we all descended. Um and went in and had surgery on the 23rd of December, and they had said that second time going in, bit more risky. So they show you the scans and carotid arteries and all this kind of thing. Um and I went in, had the second surgery, and I had a CSF leak the second time. So um that was which is so obviously as people know so what they do to plug the CSF leak is they take a bit of fat from your stomach and put it in your nose. I did say to them, you know, because weight gain is a big part of um acromegaly, you didn't have to stick it off all stick it all up my nose, but you could have taken them all out if you go Honestly. So they did that. Um then they let me out, um, despite tests out because I was uh it was Christmas and I was going home, um I was going staying uh with family members who were in the medical profession. However, I was whisked back in on boxing day uh with suspected meningitis, which I did uh I did then have. They they knew it was coming. And then I was in hospital for quite a long time. I didn't come out until in the new year, but I had so I had meningitis, which was not fun, but you know, it was it I had it too. But it was yeah, they knew what they were doing, so that's fine. And I also had um they've now called it something else, but diabetes insipidus. I had that, so my goodness, I don't really drink much water or fluids, I'm a tell but I was drinking the huge litre bottle. I just thought I was going to die of thirst. Um, and then I was also obviously on hydrocortisol as well, so I had that, but that they all sorted themselves out uh with within a few weeks, and actually six six to eight weeks after that, I was in my twenties, so all fine, didn't die, all good, that's fine, got a new dog, bought a house, went back to university um within weeks, within weeks of surgery, um, and attempted to continue with my with my PhD, uh, which I was doing at the time. So kind of quite rapidly I felt I'm done here. You know, I've I've done this, I've completed this, this is my journey, over and done with acromegaly, you know, um, all sussed. They'd left some tumour, which is very common, but they couldn't tell where it was, so they weren't gonna go back in and do surgery. I was a woman in my early 20s, so they weren't gonna they weren't gonna do radiotherapy either. They wanted to protect as much of the pituitary as they could, in case I wanted children, um, and get you know, all of those elements. So I ended up on treatment. They tried things like octriatide for a while, um, which was okay, but it was starting to come out of its kind of routine. That was what they were um prescribing. Also, I'll be honest, going having to go to a GP of a well, a nurse every month to have an injection when you're in your twenties is really tying, and you go, I I don't want to I don't and also they got it wrong all the time. You know, I'd I'd go in and sit down and they'd shake the vial, and you immediately go, okay, we'll come back in a few days because you've done it wrong. So eventually my consultant argued successfully with in in back in the day, primary care trusts um argued that I needed to be on Pegvisimont, which was just starting in the UK to come through as mainline treatment. Very, very expensive, so it had to have that approval on an individual patient level. Um, but uh excellent consultants who are very good at arguing their case. And I'll be honest, I I was on Pegvisimont probably from 2007-8 until six weeks ago, and gradually increasing levels. Also something called cabergaline, um, which is around uh controlling the tumour, but also around that prolactin um uh uh level um and and then replace they had to replace from thyroxine. So I thought kind of I got away with it pretty pretty well. I think the recovery from those first two surgeries in my 20s, they're kind of however it was probably six months after I'd kind of gone back with gusto, I've survived, hurrah, it's all been great. Life will go back to I don't know what I thought going back to was because I'd probably had it for a really long time. And I really hit I I hit a massive wall. Um I was an academic at the time, and my job was to read lots of journal articles and write essays, and I suddenly couldn't read anymore. Uh I could read, but I couldn't retain information. Yeah. Really struggled, and I still struggle now, I can read in small portions, but it was that, you know, I had to read it four times and then write a post-it note of what it said. So everything took so much longer. Um, it was and would you call it that? Yeah, and and attention span. You know, I thought I was concentrating on something to realised I was doing something else. Doing something different. And pretty much that marked the end of my academic career. I I never did finish my PhD. Um, I spent a long time trying to do it, fighting through that I should be able to do this, and thinking I when I look back on it now, thinking that I just passed my time of doing academia, which may have well done it, but actually looking back, I just I wasn't able, uh, I wasn't able to and I was exhausted. And I spent a long time going back to consultants saying I'm not right, that there's something not right. And I was diagnosing I was diagnosed with chronic fatigue syndrome, which I'll be honest is still not a helpful diagnosis because so many people don't believe in it. Um even you know, consultants don't believe in it, GPs don't believe in it. And that's really hard because they tried to suggest you should do graded activity, which is going out of fashion because the notion, you know, and and and I worked, I so I I gave up my PhD but started a job in the NHS and I had a really good career, not reading journal articles, I spied it doing other stuff, but not journal articles. And I didn't want to stop doing anything and lie in bed and gradually increase. That seemed uh a really sort of counterintuitive thing to do, but but I really struggled with and I guess I still do, uh still struggle with energy levels, you know. I think my friends and colleagues over the years know when I'm about to have a crash, sort of off the chronic fatigue crash, because I really I'm suddenly really productive. I do loads of stuff, I clear emails, I action lots of things to happen, and then they won't see me for a few days because I can't get out of bed. And um, you know, I I I could get out of bed, but then I wouldn't be able to work, so I kind of I I kind of choose choose my elements. So for a long time that was probably the hardest part of actually the recovery of it, in that you're you're recovered, but you're not. You've kind of the the consultants say you're fine, your levels are within whatever the normal range, to which I still question what's normal, because no one knew what normal was before I was diagnosed. So what's normal for me? What's normal activity levels? I mean, who are they comparing me to? Because there's not many of us, so it it's it's hard to compare like to like. And so, but you kind of you kind of end up just getting on with it because there's nothing else you can do, no one's gonna give you anything for it. Um, it's just something that you end you you end up carrying on with. So I guess for almost 20 years, I did just carry on with it, and I'd I'd changed consultants because I'd moved cities and saw a consultant for a long time who was okay, and I thought I was being I'm I'm sure he thought as well that I was I was being well treated from a clinical perspective. But over the last however many years, things still I was like this I my energy levels are awful. I feel almost I I do this, I feel almost as though my hands aren't quite right again. Um shoes that probably should have fitted a while ago, they're not as tight as they that I wasn't, you know, how many sizes bigger, but still not still not right. I had terrible problems with my hip. I ended up having a hip arthroscopy uh a couple of years ago. Awful problems um with with hip and joints um and all those kinds, and also gastro problems. Just things like, I mean, is it IBS, is it not IBS, is it irritable bladder, is it not all these kind of things that you just go, something's not right, lots of colonoscopies, my goodness, in the acromegulary world in the UK we get used to we get used to colonoscopies. Did they find products? Oh tiny ones, um, and you know, whilst we're whilst we're among friends, um one of them turned out and said, Um I my um digestions it it's sh my colon is shaped like a pretzel, which I thought was unique to me. But now when you talk to more acromegulally people, it's all extended and it has to fit in. So they kind of have to go round about, which makes that colosophy experience even better.
SPEAKER_00:Yes. So thank God for Gattermare.
SPEAKER_01:Absolutely. So so lots of lots of things like that. It kind of felt as though things just were progressing in a way that I thought there's something not again, something not right here, and you know, uh 20 years on, I'm an expert at this now. So eventually, I'll be honest, I stacked my consultant. I stacked him. Um, I I felt I wasn't being listened to. I felt also as a woman in my 40s now, there were hormonal issues that I wanted to chat about that he just didn't seem that interested in. So I found myself um through various uh family and colleagues, um, a brilliant um endocrinologist, um actually at the Christie in Manchester, so went went back north, even even though I'm living in the south now. And the moment I started talking to her about everything, again, it was that moment of no, this is all acromegalate, this is something that's all coming together. And when they looked at my test results, I was on the max I'd I'd progressively gone to the maximum level of PEG visamont you can have, and I was still my my um IGF1 levels were still high. So she very kindly said, Well, we'll get the could we'll get the surgical team to look at it, but I think we need to send you for a fancy scan in Cambridge where I don't really understand it, they do something to do with biological I I don't realise that they do a fancy scan where they can tell exactly which cells are producing the the excess growth watering. I thought it was exciting, I've not had one of those, so I was really I was quite looking forward to that as we do, but I like I think there should be an MRI, you know, rate my MRI experience across the country. Looking forward to that, but I never got one because when the surgical team back at Salford looked at my scans from the last however many years, it turns out we don't need a fancy scan. It's that tumour there that we operated on 20 years ago, it's going back. So the scan was there. I'm not gonna say whether my previous consultant had missed it or didn't know or didn't think it was a problem, but they very quickly said this is something that we want to operate on. It's back in the caverna Silas, it's causing problems. You you're not uh your cram AB is not under control, so we need to we need to operate. And and then the best the best course of action is to have an operation. So Did I tell you how big it was? Uh it was it had gone back to just around a around a centimetre, I think. Okay. Um I mean that's not a how how big I didn't ask you how big it was initially. I think it was just over that initially. It must have been, I can't remember.
SPEAKER_00:So it was a mic, it was a micro rather than mm-hmm.
SPEAKER_01:No, I think it was a macro. I was looking round for my macro is two centimeters. So I think it must have I think it must have been w when I was in my twenties. Um they operated really quite quickly. Um so yeah, so and they they operated uh six weeks ago to to to the day. So I got to experience surgical uh pediatric chiever 20 years ago and uh the same team, not the same surgeon, I went for a younger one. Um so yeah, so six weeks ago had the operation again, and they wanted to discharge me the next day, which was which is fast, and I said no, uh, mostly because they didn't give me many well they I didn't have a CSF leak, I my um I didn't have diabetes insipidus. I'm on hydrocortis because they put you on it, but what they did do, which I had asked the surgeon, could you really avoid it if you can? Um they've I've got double vision caused by uh the surgery, which I'm everything crossed that it they've just annoyed some nerves, and it will be fine, but we're fingers crossed at that. So good talking to you quite close because I can see things, but anything further away, I'm I'm I'm rotting the pirate with an eye patch.
SPEAKER_00:How does it feel uh you know, comparing that surgery 20 years ago to what you had now? I mean, I'm guessing one of the major advantages must be you know what to ask. You're probably not as scared, though obviously there's always a bit of trepidation. How how does it differ?
SPEAKER_01:So I'm gonna be like in my twenties, I think I was quite gung-ho about it all. Um so I don't know if I don't remember them telling me all the risks of it, or I didn't listen, or one or the other. Because being told all the risks in your 40s, I was suddenly like, oh hang on a minute. And actually, do you know what? The eyesight one was the one that freaked me out the most. I had I I called my surgeon back and said, I really want to talk about this because I'm really worried um about losing potentially losing my vision. I'm I've always, you know, I've been driving since my 17th birthday, and I've always been really independent, and the notion that I could not be able to drive really panicked me, and he said, Well, we'll do our best, but it is a risk. And of course, it's the one thing I've ended up with. Um, although fingers crossed that the DVLA will let me drive one-eyed, um, and and then hopefully it will go away. But and also I I'm in my 40s, I've got a husband now, um, I don't have children, but I do have a dog, um, and a needy little dog. Um, you know, I've got you know, nieces who are, you know, 14 and and and 10, and and it's the things like that that you just don't think about in your 20s. You don't really think about how it impacts others. And I guess the main thing was is when I was in my 20s being independent as I was, I went through quite a lot of it on my own. I did all the tests on my own. I kinda I hate, I don't know about anyone else, I hate having visitors in hospital, it drives me mad. I kind of quite want to stay on my own. But suddenly there's lots of people who kind of want to know what's going on, I want to see you, and and so it I'll be honest, selfishly, it's managing other people's worries and everything else that you kind of want to turn around and go, I just want to do it on my own, but you can't, obviously, you can't and shouldn't. Um you need to take people with you. But that's really I think that was harder. I think it was harder in my 40s. The one thing I did do is I've been much more engaged with the Petur Tree uh Foundation community and uh the acrobat community. And lots you know, everyone is take the rest, you know, lie in bed, do you know, make sure you rest for at least six weeks. Take it. You know, don't try don't be a hero. And I've done Don't be gung ho. Um and I'm kind of much more aware of I don't want to hit that wall in six life. I've kind of hit the wall, I'm not sure I ever got round the wall, so I don't want to hit another one. Adding a wall to the journey. So I have to, I'm I'm I'm gonna start back at work tomorrow, um, although my company are amazing and that would be gradual, and uh, you know, I'll do things at my pace. Um, and I'm sort of doing things with the Pursuitry Foundation and doing doing all of that. But it yeah, I I don't know, I I found it harder doing it in my 40s than in my twenties. The other thing I think which it's no it it's absolutely nothing to do with the consultants and the team, but my goodness the NHS is in a different place than it was 20 years ago. Just the the communication, yeah. I'm I still haven't seen my consultant, um my surgeon. I was gonna I haven't seen my surgeon surgery since since six weeks ago. I've seen his team, I saw his team two days after, but I've not seen him, and that's really different. I mean, 20 years ago, my consultant, you know, my my actual surgeon, the the guy who was in charge was there talking to me, chatting through it. I also had At the bottom of the bed, at the bottom of the bed normally, like the next I mean the the specialist nurse was there and the surgeon's team was there, but not him, and and then also I I haven't had any and I know I know now that they don't do all the tests as they used to so quickly afterwards. So um I'm I'm due in two weeks to go back and have all of the all of the tests, the the the real tests done to um to see what my actual levels of everything are. But 20 years ago they were done the next week and and they haven't been done. So it's it's difficult, and I just think that element of it sounds awful, but that always one to that one-to-one communication that I was so used to in my twenties just hasn't happened. And and I it's I just say I I work in the NHS and I work with the NHS and I have done for almost 20 years, and it it's just you know, we we don't let's not get into the the the good and bad of the NHS at the moment. That's a whole nother whole other podcast to which there's there's lots of the but I think it is is testament to the fact that it it's the NHS is in a really difficult place right now.
SPEAKER_00:It's creaking. Uh yeah, but uh aside from that, still amazing treatment, amazing consultancy, amazing sense of urgency. And you know, I I for all its faults, I still wouldn't want uh any other healthcare system.
SPEAKER_01:No, not at all. And like I could have gone privately actually, uh, with the same I it did take me some time to get surgery, not not actually due to them, due to things just boring things like work. I said I can't have I can't have surgery then. I need to I I've I've booked my I'm on my holiday that so they sent me some a date for surgery. Well, I can't do that date. I'm still away. I can't anyway. So little bits like that did cause a bit of a delay. But uh but absolutely, as I say, that the um I could have had it done privately, and I was looking into getting it done privately. But my instinct with that, and even though it was the same surgeon, is the fact that the NHS I still think is the best of the, you know, if anything had gone wrong, I still think being within the hands and the heart of the NHS is the best place to be. Um, even though some of the same people, I just you know, I say I worked for the NHS for a long time and still work alongside it, it it's it is the best place. Um, it's creaking, there is no doubt about that. Um, but I knew and know because I know the system so well, I can really advocate for myself. So I was not going home after on the second day, not a chance. Um, you know, I've I've I mean good my my specialist nurse probably doesn't appreciate it quite so much, but I've got their email addresses, I get on well with my surgeon's secretary, so all of those kind of bits. I can be bulshy and sharp elbowed to get what?
SPEAKER_00:Well, you have to be you you have to be your own warrior and your own advocate, and if you don't shout loudly, someone else will. So you you it's it's a shame that we have to do it, but this is a common thing, having done this uh podcast 19 episodes, people have to make their voice known if something's wrong because it's too too serious, it's too important.
SPEAKER_01:As I say, I'm I'm starting I I started as a ambassador for the Peturitary Foundation uh at the end of last year and and and trying to do um more around then, but but also there's a UK Acromeguli Facebook group, and I think one of the things is it's it's such a good space for people to ask questions that only Acromeguli or Pituitary patients will know the answer to. So just things like um there's a weird smell in my nose. Is that normal? Yes, it is. You're starting to get the sense of smell back, and the first thing you smell is is dressing dissolving. I it's you know, so that's normal, or I still feel quite dizzy. Is that right? And there's lots of people who will turn around and say, No, I think you should go and talk to this person, or actually that that's that's normal, or yes, we all had that. And I think it's also um people being able to say, I'm going in for surgery tomorrow, and I'm really nervous, and and just the speed of which you've got lots of people, your experience of that saying, You'll be great, you'll be fine, this you know, this was my experience, and uh you know, keep in touch and tell us. And I've I've hopefully provided some of that support to people who've had it since I since I've had mine and prior to it, because you know, I I'm new again, so I don't just have 20 years worth of victory, but I I've got recent experience of it. And I think it's only patients who have had pituitary surgery who can advise on what feels right, what doesn't feel right, whether steaming helps or nasal sprays or any of these kind of things. I think it's it you know the consultants can tell you so much, and the specialist nurse can provide a lot, but it's only other patients.
SPEAKER_00:It's the lived experience.
SPEAKER_01:Given it's such a rare condition, we've yeah, we've got to find all the help that we can. So, you know, the the wonders of modern technology. I mean, social media can be terrible at times, but some of these are the the ability to share, I think, is just so important. And our ability and lots of the comments and conversations are about, as you said, that being able to advocate. This doesn't sound right, it doesn't sound like you've got the right consultant move. You have the ability to do it, make sure you do, and and and people are doing that. And I think that's that I it's just so important with with any condition, but particularly with conditions like this, because there just isn't the expertise, so make the most of the community. I think it's really important.
SPEAKER_00:Uh yes, I completely agree, and um it's great to have another strong voice uh in the uh community too. Um when I organized pre-COVID, really, when we were doing um Acromegaly get togethers uh in face-to-face, we would have uh um male sessions, female sessions, round table sessions. Uh sometimes the women would sit in on the men's session and vice versa because they want to know what's going on. And and when I was in the Acromegaly conference in the States a few weeks ago, uh there were some really good um sessions for again men and women and caregivers as well, the family members uh who have to go through this, which is just as hard. So I think it's uh I think it's really invaluable uh that we do this. And I think the community is great actually, and we've kind of all got each other's backs.
SPEAKER_01:Yeah, it's it's really positive. I I really regret that I didn't take more part in it when I was in my twenties, but you don't no, no, no, no.
SPEAKER_00:I I really I'm gonna I'm gonna I'm gonna pull you up on this. You shouldn't regret that because you were in your twenties. This was a brand new thing. Social media was not around and as prevalent uh back in 2005. Um so I don't think you can feel any guilt for that. The difference is when you've been through it uh and you have to go through it, then you can be a voice of authority. Can't be a voice of authority uh really until you've lived through this surgery and and the treatments and so on and so forth.
SPEAKER_01:Yeah, absolutely. And and I think that yeah, it's I I mean it really is recognising the value of talking to other people that that that are going through a similar thing. I think it's fair to say that a lot, I mean, acromegaly journeys in themselves are so different. I mean, people have all sorts of different things, so you know, some people have all the symptoms, uh it's really different. So I think we equally can't be boxed it in into the same journey. So I think um I mean one of the things that I'm now really proud of is that I have not been idle those 20 years of not being engaged in the communities. I now feel, and uh, and it's one of the reasons I was really passionate about becoming an ambassador for the treaty foundation and doing more of the things I'm doing now, is that A, with my experience of the condition and rare diseases itself, but also I've spent my years working in the NHS, working in pharma, and now working for a big data company, that I'm really using some of those lived experiences to make sure that sort of, you know, trying to how can we help with the diagnosis process? How can we make sure that more people are diagnosed even earlier than their um mid-20s? I mean, I think more and more people are coming through. How can we make it so that people are diagnosed before they've got facial features or had or or anything else that that is is going to go on for a very long time? And I I know they say that acromegaly only happens after puberty, but there's something going on that there's something going on earlier than that. We don't all get gigantism and become seven feet tall, but there's something going on. It can't it can't happen that quickly, and they're starting to understand that it's really important that we become vocal about it, but also that recognition that you know, diagnosis in primary care, you know, by the time you're seeing consultants for Acromegaly, my goodness, you're a long way down that journey. A lot of this needs to happen in primary care. So, how do we build awareness? And the other thing that I'm just passionate about in my career as much as this is data sharing. Um, I'm a real advocate for data sharing. I I still believe that if one of those many consultants I'd seen had seen the other information, so I don't know which one, but one of them, maybe something would have tweaked in in the back of their mind when they'd studied rare conditions probably for about two hours. Hang on a minute, you know, swelling, big hands and feet, oily skin, you know, something all that maybe one of them would have turned, and I might I might have been diagnosed a few years earlier, but now with all of that, the ability to share, surely, and with algorithms and I mean I know AI can be really but surely there's there's there's got to be something that can really help uh particular, you know, and it's not act regularly is not the only pituitary rare diseases, there's lots of them across that, but all the other rare diseases, there's got to be a way that we can share data so it's not just in the hands of one clinician or one GP to have to try and piece this this horrible jigsaw. No, of course.
SPEAKER_00:Are you um are you aware of medics for rare diseases? I certainly am.
SPEAKER_01:I did some work with them when I worked in Pharma uh and I'm looking at how we can because again, you know, GPs and and others have a real, really rough time, and my goodness, as we said with the NHS at the moment, it's a rougher time. And the more people that have at their hands the ability to access information, be more upskilled, as well as everything else that they're trying to do at the same time, but all of those resources that that could be available to to just help people pull that together is is really key. And so I'm really passionate about trying to make a difference in that because I've got the connections, I've I've you know, I've worked in all the different aspects from the NHS to pharma to Nell, data, and digital, that hoping that I can add some value to the to that realm of banging the drum that that this needs to happen more because I the Acromegaly community is growing at a speed faster than it should be if you take the number of people that have Acromegaly per 100,000. It's growing, and that can only be through diagnosis and people knowing more. But I still I fear it's coming because of people's access to things like social media and groups that people are diagnosing themselves, and brilliant, but also it it needs to be handled with care because it it's uh it just it can be a scary journey, and and I think that um you know let's take the clinical professional along with us.
SPEAKER_00:I completely agree, I completely agree, and I think that is a perfect place to end this. So, Rose, I want to say a massive thank you for sharing your story and sharing your insights as well. Um I I won't ask if it's been useful, but I think your your desire to want to become more of an advocate is uh clearly evident. So uh this is just one other small you know uh contribution. Uh but if somebody listens back and hears your story and uh and and gets something from it, then it's all worthwhile. So thank you very much. It's been fun.
SPEAKER_01:Very welcome and and thank you for taking the time to talk to me.
SPEAKER_00:Not a problem. And if you found Ross's story interesting and want to hear other AcroTales, head over to Acrotales.com where you can find the ever-expanding library of interviews. And of course, you can subscribe to the podcast to receive the latest updates. You can do that on iTunes and Spotify and on the website as well. So I just want to say another massive thank you to Ross, and we'll see you next time for another Acrotale