AcroTales
AcroTales
Episode 1 - Lauren
In the first AcroTale, Lauren from Kent, UK talks about being diagnosed with Acromegaly in her early twenties, the battle for a successful diagnosis and how this unusually large pituitary tumour impacted her life - without dampening her spirit.
Hello and welcome to AcroTales, a regular podcast that explores the fascinating world of Acromegaly and what it means to live with such a rare condition. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. And in each of these episodes, I'll be interviewing somebody from around the world who's been diagnosed with Acromegaly and has a fascinating story to tell. And if you don't know what Acromegaly is and you've just stumbled across this podcast, head over to the Acrotales.com website where you can find out much more about Acromegaly and everything that that entails. I am really pleased to have on uh this episode uh a young lady called Lauren who comes from Kent in the UK. Lauren has a particularly fascinating story to tell. So, Lauren, first of all, I'm really, really grateful to you for joining me for this uh conversation. How are you doing?
SPEAKER_00:I'm good, thank you. Just finished work.
SPEAKER_02:Excellent. So you should be feeling fully refreshed for a nice chat. A nice chat about your rare conditions. So we've met a few times, and um I think it's important actually for the listeners uh to know um firstly, I'm gonna ask how old you are?
SPEAKER_00:I'm 29.
SPEAKER_02:You're 29 years old, okay. What and can I ask when were you diagnosed with that chromegaly?
SPEAKER_00:I was diagnosed in 2015.
SPEAKER_02:Okay. So in your mid-20s.
SPEAKER_00:That's right.
SPEAKER_02:Yeah. So perhaps let's go back a few years then, uh and maybe just tell your story, how you found out about it, the signs, the symptoms, uh, the concerns that you had.
SPEAKER_00:So I think as soon as I stopped puberty, really, things w weren't right, you know, with the periods and the headaches. I went to the GP probably once a week, and they were saying, It's down to your job, I'm a hairdresser, it's down to my job, I'm on my feet too much, I look at my phone too much, I should try to lose weight. I was eating a melon a day, you know. It was right. So I thought maybe this is just how everyone feels, and I I was making it up in my head, you know, because the G the GP, the doctor always was saying that I was okay. Of course, they didn't do any tests, but that's that's just what they said to me. So this went on till about 2012. So it went on for about six to eight years, I'd say.
SPEAKER_01:Wow.
SPEAKER_00:So 2012 I thought, right, I've had enough. This just must be how everyone feels. And I went to my doctor before I went travelling. I went I was away for two years, and I said to him, Are you sure I've still not got my period? You know, like it's very irregular. That was my main thing because I thought maybe I was making my head pain up, but I had that physical symptom of not having a period. Um and he said, No, it's fine, just come and see me when you're back. And I said, Well, I'm traveling, it's not holiday. I don't know when I've got a one-way ticket. So I went and I had a great time, but was was poorly, you know, fatigued and headaches and that kind of thing.
SPEAKER_01:Right.
SPEAKER_00:And then when my mum came to visit me, and she just noticed a massive difference in me. Physically, physically, yeah, in my appearance, and she couldn't understand why I was in these amazing places, but had to go to bed so early. Why why I couldn't enjoy it a little bit more?
SPEAKER_01:Right.
SPEAKER_00:So I came home and mum came to the doctors with me and kind of demanded that we have some tests done. So this was late 2014, and then early 2015, I finally saw an endocrinologist within minutes of being in the room with the endo. He said he thinks I have something called acromegaly. And I was like, Oh great, well, give me a pill or something, you know, and I'll be fine. Had no idea what it was.
SPEAKER_02:Of course. Well, why would you? It's such a weird word when you hear it.
SPEAKER_00:I'd never even heard of the pituitary gland before, you know.
SPEAKER_02:So you were uh sat in the in the endocrinologist waiting room, you hear the word acromegaly. What next?
SPEAKER_00:My mum felt a relief that there was actually a diagnosis whereas I felt he's wrong. He's not right, because I'd been told for so long that there was nothing wrong with me, and I was making it up essentially.
SPEAKER_02:So that m that must have been sort of psychologically quite difficult then because obviously for so many years you've been told by professionals there's nothing wrong with you.
SPEAKER_00:And you were meant to trust the doctors, right?
SPEAKER_02:Yeah, and then and then eight, nine years later, it's well, there is something very wrong with you, and you have this brain tumour or paturatory condition, that must have been at that at such a young age as well. So w how old were you when this you were being told this?
SPEAKER_00:So I was twenty three. Twenty-three, twenty-four, around that age.
SPEAKER_02:Okay.
unknown:Yeah.
SPEAKER_02:So you found it a shock and and difficult to deal with, I guess.
SPEAKER_00:I did, but I always had the attitude where I thought, okay, fine, I have this, but it's not gonna stop me. I'm gonna get through it, and there's gonna be another side. From from the moment I left the hospital, that was my attitude. And of course, there's been moments in the journey where I thought, yeah, this I can't see myself getting out of it. Of course, it's a lifelong.
SPEAKER_02:Yeah, it is a lifelong journey. So you you saw your endocrinologist, and they I'm assuming they sent you off for an MRI scan.
SPEAKER_00:That's correct, yeah. So he sent me off for an MRI, it's still at my local hospital, um, and he actually, the consultant endocrinologist, met me from the MRI room, which is unheard of. Right. And was like, yeah, you have acromeglay. I'm referring you to King's College Hospital today.
SPEAKER_01:Okay.
SPEAKER_00:So within a week, I'd heard from King's College Hospital to go and meet my new endocrinologist in London who would then introduce me to the neurosurgeon, etc.
SPEAKER_02:Okay. And and what did they tell you then? What were the results of the MRI in terms of the tumour?
SPEAKER_00:What was Yeah, this this was the most shocking bit for me because the local endocrinologist kind of said, yeah, it's a simple operation, fairly simple. We'll just go up your nose with a small hoover and suck the tumour out. So I thought, oh, that doesn't sound too bad. Um and when I sat down with my endocrinologist at King's College Hospital, Dr. Alwyn, he it was very difficult. I'd never been in this situation before, and I could tell by the way he was approaching the conversation that maybe it wasn't so straightforward as I'd have initially thought. And he said, right, I remember the words so clearly, he said, right, Lauren, these things come small, medium, large, and yours is extra, extra large. So you're gonna get to know me very, very well. And I'd have thought, what on earth is he going on about?
SPEAKER_02:Okay. Yeah, you want to hear small, you want to hear small, medium, and large. You think I'll I'll take a medium.
SPEAKER_00:Yeah, medium and big, okay.
SPEAKER_02:But extra, extra large. And so do you what did they tell you the size of the tumour was?
SPEAKER_00:So it was seven centimetres. So just a little bit bigger than a credit card.
SPEAKER_02:Right. God blame me, that's really big.
SPEAKER_00:So he said it was the si the length of my middle finger, and of course my fingers aren't small.
SPEAKER_02:Okay. And had he had he encountered a tumour that size before, do you know?
SPEAKER_00:He had didn't say so, but the way he was talking to me, and he's actually said afterwards he didn't know how to approach the subject because he hadn't had a this situation, you know, with it's the my pituitary tumour was acting like a cancer, and that's very unusual. So he didn't know what the prognosis, you know, that would be.
SPEAKER_02:Yes, I mean I think you know, most I I I had seven millimeters, eight millimeters was my tumour. Most people, if it's over two centimetres, is a macro adenoma, uh, which is considered big. Seven centimetres is is pretty huge. So uh did they get you in for surgery very quickly?
SPEAKER_00:Absolutely amazing, very, very quickly. I think maybe I waited three weeks, and in those three weeks I was back and forth to King's for like different scans, different meetings with like pre-ops, neurosurgeons, that kind of thing.
SPEAKER_02:And had you noticed a a change in your appearance, you know, just before going into surgery over these years. Had you seen this change in in the way you looked that most acromagalics ha have to live with?
SPEAKER_00:I th yes, definitely. The thing I moticed no most was my hands and feet. I think with because I was younger, of course, I was looking back on pictures thinking I look so different, but I guess that's normal, you know?
SPEAKER_02:Okay. Yeah, that's it. And psychologically, your brain sort of plays this trick on you. You think, well, I'm just growing older or I'm just changing. You don't associate it with a a medical condition, let alone a mature tumor.
SPEAKER_00:I mean, the doctors put me on water retention tablets for my hands. They didn't they didn't do anything because it wasn't the water. So that that was my biggest thing, growing out of shoes and and rings.
SPEAKER_02:And and I'm guessing, you know, it's probably you've thought about this, but at such a young age, that's really a challenge. You know, again, most people get acromagally in their 30s, maybe their forties. I mean, it's particularly cruel to have it um, you know, at that age where you're still developing and you're kind of at your prime in in many ways.
SPEAKER_00:Yeah, I yeah, I suppose. But I feel I don't know.
SPEAKER_02:I still doubt If you're living through it, if you're living through it, it's different, I guess. And maybe Yeah.
SPEAKER_00:Yeah, I don't really look it back on it like that. Like, in a way, I was glad I wasn't diagnosed a little bit earlier because then I would never have been able to go away for two years like I did.
SPEAKER_01:Okay, okay.
SPEAKER_00:See, for the foreseeable f foreseeable future, that's just not an option because of hospital visits and medication, you know.
SPEAKER_02:So looking back at those pictures then that you've kindly shared with us, um, how how does what what do you think when you look at those?
SPEAKER_00:I was so ill, but I didn't know it, but I was living life to the full.
SPEAKER_02:Okay. And that's an amazing attitude to have. And I I I've met you a few times now, Lauren, and you definitely have a a very positive attitude towards this condition. Um, which I think it's important to go back to the surgical procedure, um, you know, had f really further complications post-surgery, didn't it? So what happened, you know, uh after the tumour was removed?
SPEAKER_00:So after my first, so I had one transphenidal surgery up my nose um and two open-brain surgeries, craniotomies. So after my first craniotomy, I had third nerve palsy in my face, which meant my right side of my face shut off completely, which was the side where my tumour grew behind my eye. Um, so I couldn't open my eye or my mouth, and that lasted for about three, four months. And just as it was kind of getting better and I can open my eye, I no, I'm lying.
SPEAKER_02:It's alright. We've these things go on. It it's weird when we re try and recount our stories because we don't always get it right. And I I I think that's sometimes a good thing because it it's not always completely fresh in our memory, if that makes sense.
SPEAKER_00:Yeah, so I had the third nerve palsy after the transphenidal surgery, that's right. And then after my first craniotomy, I remember waking up and the third nerve palsy had healed by then, so I could open my eye. I opened my eyes after the craniotomy, and one of them was just kind of going like out of my left eye, I could see fine, but the other one, it was kind of like the only way to describe it was just like a cloud coming over slowly, like grey, and then by the time I've told my nurses and the doctors there, it's black. My right eye's just got no light perception at all, not I couldn't even see a shadow. Um, and that's I don't really know why, that's never really been looked into, but from what the neurosurgeon said, it the tumour grew around my optic nerve on my right side. So when he removed the tumour, unfortunately, the nerve collapsed, which means it doesn't connect to my brain, yeah. So I don't have the vision.
SPEAKER_02:That's not uncommon. I mean, it doesn't happen often, but I think with particularly large tumors, there is the the possibility for the optic nerve to be infringed or touched or uh, you know, affected in some way, and there can be some visual loss. But I think, you know, just to put that into into uh perspective for everyone that's listening, literally within two hours of you waking up from surgery, you were blind in one eye.
SPEAKER_00:Yeah. And I remember going into surgery when we was in the pre-op room, I was getting my big socks on. That was my main concern. Um, is my eyesight going to be okay? Because I've had the third nerve palsy, so I kind of had a little bit of a taste of what if it was what it was going to be like to have one eye, because my eyelid was permanently closed for a few months. Um, and he said it's less than one percent of patients that have problems with their eyesight post surgery. So I was quite confident with that figure, but of course I was in that 1%.
SPEAKER_02:Yeah. Well, welcome to the one eye club.
SPEAKER_00:You know, there's nothing wrong with it, you know.
SPEAKER_02:It doesn't make a difference. I might walk into the occasional door now and again, but yeah, it's great for ignoring people. So yeah, it is, and and and this is the kind of spirit that we have to sort of take on board when we're dealt these these hands, I think. So, you know, I love it. It's really refreshing.
SPEAKER_00:Yeah, in my day-to-day life, I don't even notice that there's I've only got vision out of one eye. I've got my driving license, I'm a hairdresser. It's quite funny when I tell my clients I've got one eye. They're not quite sure how to react, I don't think.
SPEAKER_01:Yeah, don't yeah, they what do they expect to leave with a like half lopsided haircut with?
SPEAKER_00:I mean, I've had some ridiculous comments. They say, I've had someone say to me before, so does it mean you can only see half of me? How does that laugh?
SPEAKER_02:So you're out of hospital, uh you've lost vision in one eye, and obviously you've you know you've had the if the changes that can happen sort of visually. How was life after that then when you you came out of hospital? First of all, your friends and family, how did they respond to this? And and then how did you sort of approach life uh and sort of getting on with the day-to-day stuff?
SPEAKER_00:So after I came out of hospital after losing my right eye, I was then told I needed a second craniotomy. So I was really preparing to go back into surgery just to get well enough to then have another operation done. So then I was told I was gonna have the second one, so that was done, and then the next treatment plan was radiotherapy. So I was always just kind of it was like bang, bang, bang, bang, next, next, next. So I always just was kind of get getting fit enough to then have the next treatment, which was the radiotherapy.
SPEAKER_02:So there was obviously still residual tumour left over.
SPEAKER_00:Yeah, they couldn't get it all out, unfortunately, because it had grew around my corted artery.
SPEAKER_02:And I think uh again, we're perhaps assuming that people listening know what a craniotomy is. Could you maybe just explain that?
SPEAKER_00:So essentially it's open brain surgery where they go in through the skull, remove a piece of the skull, and then get in the brain that way rather than up the nose. Because my tumour was extra large, they needed to get into that extra space.
SPEAKER_02:Okay. And when they explain that to you, you know, pre-surgery, most people are pretty scared about them going up the nose. How did you feel about that prospect of a craniotomy?
SPEAKER_00:Obviously very scared, but the thing I was most concerned about was losing my hair because I think everything with the appearance with acromegaly, there wasn't really a goal in sight for me to get better at that point. I knew it would be such a long journey. So for then having to have a bald head as well, which I think as well, when people have bald head, it's always people think you've got cancer, and that's not the case.
SPEAKER_02:Okay, so it it But I didn't Yeah, it was the aesthetic appearance, you know, the and I'm not tr treating that trivially. I th I I everyone uh you know responds to these um surgical procedures and outcomes in different ways. And I can imagine when you're when you're young, you've got a big head of hair, you're a hairdresser, you know, the prospects of potentially losing all your hair must have been.
SPEAKER_00:Yeah, you know, I mean, you know you're gonna wake up from surgery feeling like rubbish, and then to have then to look extra rubbish, you know, with a bald head. I mean, some people look absolutely some women look great with the bald head, but you know, you just think you're gonna feel rubbish, and then I thought, well, I'm gonna look rubbish for ages as well.
SPEAKER_02:And how are your friends and family uh around this time? How important was that network to you?
SPEAKER_00:My family are still amazing. My brothers and my mum and dad and my aunties and cousins are just great.
SPEAKER_01:Okay.
SPEAKER_00:My friends, a few of my friends were really, really good, but I did lose friends as well.
SPEAKER_01:Okay.
SPEAKER_00:Definitely I've lost friends through the journey.
SPEAKER_02:Because they've not understood what you're going through, or they've just not supported?
SPEAKER_00:Not understood, been a bit ignorant.
SPEAKER_02:Okay.
SPEAKER_00:Yeah.
SPEAKER_02:Okay.
SPEAKER_00:I think as well, because you have had brain surgeries, you've had radiotherapy, people expect you just to be better when with acronymegly it's not like that. So I think they just didn't quite understand that process, some friends.
SPEAKER_02:Yeah, and again, it's you know, it's a hidden condition, isn't it?
SPEAKER_00:It's Yeah.
SPEAKER_02:I'm not walking around with a bandage. No, exactly. And and even if you're blind in one eye, that's not necessarily a visible problem. You know, so yes, it's it's hard for people to understand that sometimes, and and um I I I totally get where you're coming from. But I uh I think you you know, the family network is such an important factor in helping you feel better and helping you sort of rediscover yourself a bit post-surgery.
SPEAKER_01:Yeah.
SPEAKER_02:Um and obviously, you know, it sounds to me, Lauren, uh, like life has been pretty good. I mean, I know that for example, uh a few years or soon after you came to I think the first Acromegaly meetup that we did in the UK, um you uh you got to do a feature on the local news.
SPEAKER_00:Yeah, that's right.
SPEAKER_02:Was that a cathartic experience that you're kind of accepting?
SPEAKER_00:Yeah, I think I've always kind of accepted it and I've just thought, well, I'm gonna grip my teeth and get on with it. You know, there's no point looking back thinking, what if, why me? Thought I've got this, let's deal with it head on. And I really wanted to raise awareness because I thought if my GP had maybe spotted the science before, I could have potentially not gone blind in one eye.
SPEAKER_01:Yeah.
SPEAKER_00:So my main thing with the press was to try and raise a little bit more of awareness.
SPEAKER_02:Okay. And that and I've seen the video of that, and it was absolutely fantastic. And you must have got some amazing feedback from it, uh, from you know, again, yeah, I did, I think.
SPEAKER_00:Yeah.
SPEAKER_02:Okay. And can I just going back to that one point, do you uh and it's understandable if you do, but do you kind of feel any um not remorse, but kind of annoyance maybe that GPs and those that are specialists didn't pick this up earlier?
SPEAKER_00:I mean the specialists were great, the endocrinologists that I saw, but the GP, yeah, for sure. He for so long just kind of made me out to feel like I was lying.
SPEAKER_02:Um It's it's very different. I was at um at the Medics for Rare Diseases uh uh symposium yesterday, and the real focus is on something called the diagnostic odyssey. And the diagnostic odyssey is that journey in which you are finally diagnosed with your rare condition. And of course, it's very hard for GPs because there are there are over 7,000 rare conditions. And yours, Acromegaly, you might be the only person they've ever come into contact with, and they probably read about it.
SPEAKER_00:Yeah, I was.
SPEAKER_02:Yeah, so they probably read about it in a in their medical textbooks 20 years ago when they were studying it. And to see all those little signs and symptoms is really, really hard. And the trouble is is that we get bat we get batted around.
SPEAKER_00:Um I would never have expected them to diagnose me with acromegly, but I would have expected them to take my symptoms a little bit more seriously.
SPEAKER_02:Okay. And maybe so being referred upwards and that's right, yeah. Okay. I I I totally get that. So Lauren, you've got such an amazing and positive attitude. If you were to um meet someone now who's uh recently been diagnosed with acromegaly, what what would you tell them? What would be your words of advice?
SPEAKER_00:That's a hard one. What would be my words of advice? I'm not I don't know, I don't look at myself and think I have an illness, it's just me. Maybe this is because I was like this all started at an earlier age, you know? But I don't look at myself any differently from the person next to me.
SPEAKER_02:I don't think I'm less able than them, or you know, I don't No, I totally understand that, and uh and uh I I'm I'm kind of in a similar frame of mind as you. Um and it's you know it's to be applauded, but it's the way that we're made up, and and for some people that uh it's not quite as easy for them to be able to do that. I do think you're right, it's something that because it was kind of been put on you from such an early age, it's almost been part of your life, not from the beginning.
SPEAKER_00:From as long as I can remember, really, from being like an adult life.
SPEAKER_02:Yeah, but not far off. Lauren, it's been absolutely fantastic talking to you, and um, I know I keep saying it, but you are really for me one of the true inspirational voices of Acromakerly because you're you were dealt really Yeah, really, because you were dealt such a rough blow and early on with a humongous tumour uh that's left you blind in one eye within two hours of waking up, and yet your sort of spirit and your um positivity is completely addictive, I think. And uh so I'm I'm truly grateful to you joining us on this interview. So thank you very much.
SPEAKER_00:Thank you. Can I just say thanks to my hospital? I just yeah, one last thing. I love my hospital, King's College Hospital, they're the best people.
SPEAKER_02:Thank you, Lauren. That's awesome. And uh, if you found Lauren's story really interesting and would like to hear other Acro Tales, you know what to do. Head over to Acrotales.com where you can find the ever-expanding library of interviews. Uh, so this is me, Dan Jeffrey, signing off, and uh, we look forward to seeing you next time for another Acro Tale.