AcroTales
AcroTales
Episode 4 - Rachel
In this episode of AcroTales we talk to Rachel from Oxfordshire in the UK. At the time of recording, Rachel had undergone surgery to remove her pituitary adenoma less than two weeks before, so this is a amazing opportunity to hear from someone who is fresh out of the operating room.
Rachel has also made some videos about her journey with Acromegaly, which can be found here on YouTube.
Hello and welcome to AcroTales, a podcast that explores the fascinating world of Acromegaly. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. In each episode of AcroTales, I'll be talking to fellow acromegalics from around the world about their journey with this unique condition. And for episode four, I am really pleased to introduce Rachel from Oxfordshire in the UK, who is 33 and sort of currently recovering from surgery. So, Rachel, thank you very much for joining us.
SPEAKER_01:That's okay.
SPEAKER_00:And so this is a very unique situation because you really are just out of hospital having undergone the surgery to treat your acromegaly, is that right?
SPEAKER_01:That's right. I came out of hospital on Wednesday last week.
SPEAKER_00:Wow, okay. So you are you are in a unique position to tell us your experiences. Before we get into that, could you maybe tell us about your diagnosis and your journey to discovering that you had acromegaly?
SPEAKER_01:Yeah, sure. So um it all actually happened quite quickly in the end after obviously years of um issues, but um I I actually had bad ankles, which was what triggered it. So um I had had a baby in 2018, and then um when I was on maternity leave, I thought I should just go and speak to them about my ankles because they've been very sore for a long time, um, kind of Achilles pain. Um, and so I went to the GP, she referred me to physio, they weren't overly concerned or anything, and then I went through about six months maybe of physio with nothing getting any better. Um, to the point I got referred to um a sports clinic um with you know specialists of sports injuries, which I I knew it wasn't a sports injury. Um, and um at that point they'd kind of asked me about different things that you know different I thought I had arthritis, I have to admit, because my fingers had grown, like got bigger, I couldn't fit my wedding ring on anymore.
SPEAKER_00:Okay.
SPEAKER_01:Um, and the only condition that I knew that kind of made you know swelling was um arthritis. Um so I'd mentioned my hands, um, and then my mum was with me, and it's always been a constant joke about my feet, because my feet are quite odd looking and I've got very big toes, um, and everyone's kind of always kind of in the family joked about that, um, especially the last few years. And so the doctor kind of looked at my feet and were like, Oh, have they always been like that? And my mum almost fell off her chair laughing. Um, and at that point they kind of said, Oh, there is this, we'll do the blood for the growth hormone. Um, and then kind of looking back kind of over the years, there were other things that I'd had that I didn't know was related. So I'd had um bilateral carpal tunnel and I'd had surgery on both of them because it was very severe in 2016. So I was only 30 um at that point, which is obviously quite young for carpal tunnel. Um, and then I'd had um obviously headaches, um, but I'd kind of just learnt to live with them because probably like many other people, I'd been to the doctors and they just kind of brushed it off as stress or um work or life, or you know, people get headaches. Yeah, exactly. And actually, I'm I'm a nurse, and so as a nurse I kind of felt a bit embarrassed, kept going back because I had headaches.
SPEAKER_00:So Okay, so so so it was a doctor, you was it your GP then, your general practitioner doctor, that just uh diagnosed your echromegaly and suggested the growth hormone test, or was it someone else that you were seeing?
SPEAKER_01:No, it was the specialist sports doctor.
SPEAKER_00:Wow. So you're really, really lucky then in many ways to have a somebody who had who was aware of this condition and kind of linked it all together. Yes, so let's go. Oh, let's just do this test.
SPEAKER_01:Yeah, like we keep saying now, like it's amazing. Like when I went like to the enkinologists and stuff, they were like, it's amazing that this person picked it up, really.
SPEAKER_00:Yeah. It's uh it I can't tell you how often fortune plays such a huge role in uh diagnosis. Yeah, especially early diagnosis. I was exactly the same, my condition was picked up by medical students who uh who were there to actually look at my eye condition and diagnose me with acromegaly because they didn't know what they were being tested for. So you know, I was sat there going, what the hell are they talking about? Yeah. So yeah, having really on the ball observant um uh specialists is is so fundamental. So I guess you went for your growth hormone tests MRI scans.
SPEAKER_01:Well, it got a bit complicated with the growth hormone test because my tests were basically really erratic. So um they were just they weren't what they would expect to see. So um I basically I'd went to the doctor on like I saw that specialist on the Wednesday, I think it was. No, must have been the Monday, sorry. And then I had um my blood stunned that day, and then on the Thursday, they'd rung me up and said, Um, we think you've got a tumour, there's um you've got a really high growth hormone, um, we're booking you in to see the emergency appointment for enkinology and an emergency MRI tomorrow. So I was like, Oh, okay, that's all quite quick and serious.
SPEAKER_00:Was that scary? I mean, did that and did the mention of the word tumour was that explain to you that it was a you know not cancerous?
SPEAKER_01:Yeah, they did say it's non-cancerous, but I think it's just it wasn't what I expected.
unknown:Right.
SPEAKER_01:Um and so I was at work at the time, I was with uh I was with a colleague at the time, um, and we were just we were just heading off to a meeting, and I was like, I don't think I'm going to that meeting. Thank you.
SPEAKER_00:Yes. And and and and and and as a nurse, had you heard of Acromegley? No, I'm not.
SPEAKER_01:And I um I'm I'm a mental health nurse, so it's not something that would be commonly come up, but I do work with medics, so I did go straight back to one of the medics and um on my unit and say they've just told me I've got Acromegly. Or I attempted to say Acromegli, because at the time I couldn't say it, but and um and he kind of was like, Oh, okay. Um, and I think was a bit like, really? Like that's strange.
SPEAKER_00:Yeah, I mean, yeah, I mean it's rare, you know, it's very, you know, medics may meet one person in their entire um career that has this condition.
SPEAKER_01:So my I then um so that was on the Thursday, and then on the f Friday they rang me back and told me not to go to my MRI because my growth hormone had gone back.
SPEAKER_02:Right.
SPEAKER_01:So this was ne this is never we've never found out why this has been this was kind of reported, other than they um I did go to my enquinology appointment on the Monday. Um and again they were a bit like, oh, maybe, maybe not. Um and and they obviously repeated all of my bloods, they did bloods for everything, can you know, did me a full kind of like once over and everything. Um and I think that they they I when I left that appointment, I had the impression they don't think I've got it, they don't think I've got acromegly, which a little bit was a little uh sounds a bit strange, but it was a little bit disappointing because I thought, wow, I finally got like an answer to why I'm tired or why, you know, all of it. It it kind of makes sense. Um so it was a little bit disappointing, but then um it took a while for my bloods to come back again because they were so erratic. Um, and they actually sent them to different hospitals to check um because they couldn't quite understand what was going on with them. Um, and then so from there I then went back and had the glucose tolerance test.
SPEAKER_02:Okay.
SPEAKER_01:Um, after they they said, We think you've got it, so um, well you think your gray hormone's high, so we'll go and do the tolerance test. I did that, so that confirmed it, and then I had a scan eventually.
SPEAKER_00:So, yeah, so that must be pretty frustrating then. Um you know, you're trying to put a name to this condition, you know you've not felt well, you know, I think you know when you read the symptoms, you know, enlarged hands, change in appearance, uh feet. You knew that you had acromegaly, but trying to get the science to prove that you had acromegaly was was obviously a bit of a challenge. So um I guess it was for you that allelujah moment when they said to you, yes, it's positive. And it's really weird to get that diagnosis, isn't it? But the point the point is that you can then proceed and do something about it.
SPEAKER_01:Well, exactly. And I said to my husband when I had um so when they said they thought I had it, then they said they didn't think I did. Um, I said to them, actually, I was really upset. I was just that I really thought that maybe one day I could wake up without a headache. And it was like they'd taken that away from me when they said I didn't have it again. So then I was very grateful to have it, which is weird, but yeah.
SPEAKER_00:No, I know, I totally get that. And I think anyone who's experienced acromegaly or even uh, you know, a uh a condition that's taken a long time to be diagnosed, you know your body and you know where you know what's going on. So putting that name to it is really important. So I guess the results came in, MRI scans done, and then it was a case of scheduling the surgery.
SPEAKER_01:Yep, so um I was really fortunate actually. So I went in on New Year's Eve. Um that's when they obviously had booked me in for the clinic to speak meet the surgeon. Um I didn't realise at that point they were gonna start me on medication.
SPEAKER_00:Okay.
SPEAKER_01:So I was started on um oh god, I can't remember the name of it, but the in big injection. Um and because my growth hormone was so high, they wanted me to start it before surgery.
SPEAKER_00:Did they sorry to interrupt, did they tell you if it was um how how big the tumour was? Was it a macro or a micro?
SPEAKER_01:It was a macro, so it was a large macro, they said, but I don't know the actual numbers if it was.
SPEAKER_00:Okay, so that would be so a macro, I think, is over two centimetres. So Yeah, I think so. Okay. So that's so they wanted to try and reduce it then, obviously.
SPEAKER_01:Yeah, they said that if they could they that they couldn't they didn't think the medication would be able to reduce it load, but it might be enough just to be able to get more out, because they'd basically said that they weren't going to be able to get the tumour out or the entire tumour out.
SPEAKER_00:Okay, okay. Um so how long were you on the medication then before the surgery?
SPEAKER_01:So I had the injection twice. So um I had 120 milligrams, which is the highest dose, um over 28 days. Uh yeah, so two injections, 28 days apart. Um I reacted quite badly to the first injection, um which was annoying because I'd kind of thought, well, now I feel more ill now they're treating me than I did before. Um but um I mean to the point we'd gone to um we'd gone on a holiday with some friends um and I ended up in AE from like vomiting and diarrhea. Oh, okay, okay. Um which was really unpleasant. But really, uh like people get people get vomiting and diarrhea, but I just seem to get this extreme version of it. I didn't get it with the second injection, so I think it was just a bit of a it's your body adapting, I suppose, and yeah, getting used to it. Actually, okay and then so I had the injections and then I ha obviously had the surgery on the 24th. So I didn't really have that long wait, I don't think, from New Year's Eve to the 24th of February.
SPEAKER_00:Okay. So 20 yeah, so less than two months and 24th of February literally being my God, just over a week ago.
SPEAKER_02:So Yeah, yeah.
SPEAKER_00:So how was the uh I mean I think a lot of people go in for the surgery and they can be very scared. It's sometimes the first time they've had invasive surgery. Uh yeah. Especially as an adult. And also, you know, the idea of they're gonna go up the nose and scoop out this little tumour below the brain. Were you were you scared? Were you looking forward to it? You know, what was the emotions you were feeling?
SPEAKER_01:Um I don't I don't think I was I don't think I was scared. I don't think I let myself go go there, if that makes sense. I'm I'm very positive anyway, and I've made a really big point of being positive about this whole thing anyway. I the thing that I was worried about most was that I thought, oh, maybe they'll cancel the surgery.
SPEAKER_00:Yeah, well that's not impossible. Yeah, well, you build yourself up for it. You you know, you you're in on that day, you want to get it done, and then it's put back a week or something. It's it's very frustrating. But it sounds like it wasn't cancelled then.
SPEAKER_01:So No. Um and I was first on the list, which was nice, so I didn't have to like wait around. So I went in the night before actually, um for I don't think for any other reason other than you're just there then. Um and then um yeah, so I went down at like nine o'clock or something, which was really nice.
SPEAKER_00:Um I met everybody first, so the surgeon came up to see me, the um anesthetists, another doctor, I can't remember who she was, but uh um normally it's like an endocrine nurse or potentially that you get like skull-based specialists or someone that's there to sort of help you after the process as well.
SPEAKER_01:Yeah, so lots of kind of and it felt very like, oh okay, this is happening then. Um and then yeah, it was just like I went in to have the anesthetic and everything, and then obviously you're out of it, aren't you? So um, and then when I woke up, I mean it hurt. Not gonna lie, I had you know, in my face, my face felt very painful, but I thought, well, of course it does, you know, I've just had surgery on it. Um so and a lot of people asked if I felt an immediate kind of relief, and I don't think I did. Um, I think because you have the whole trauma of the fact that you have just had, you know, a tumour pulled out of your nose um happening. So um, but by kind of the third day I wasn't even taking painkillers.
SPEAKER_00:Wow, so that's that's a pretty good recovery. No um obviously no spinal fluid leak or CSF leak as they call it. So uh you didn't have any of the dripping white liquid, so that means they did a very good job patching it up. And did they tell you if they managed to get all of it or was there any left over?
SPEAKER_01:So um they said that they got everything that they saw, which was really good because it wasn't what was expected. They thought they'd be leaving some because it was um kind of uh embedded into the carotid artery and on the optic nerve. So um, but of course they'll have to wait for the MRI in three months' time to know exactly what if there is anything left. But everything that they could see with the camera was is gone.
SPEAKER_00:Oh that's brilliant.
SPEAKER_01:And and have they put you on any medication kind of after surgery just to manage it, or are you no, so I went I was on hydrocortisone, but I went to I went back to the hospital for my checkup yesterday and they did all of my bloods for like the sodium levels and cortisol levels and stuff, and all of them are fine. So they said I can come off the hydrocortisone, which is nice.
SPEAKER_00:Okay.
SPEAKER_01:And then I've got to wait basically six weeks, and then um they'll redo my hormone levels, and at that point they'll decide whether I still need medication.
SPEAKER_02:Okay.
SPEAKER_01:They thought at the beginning they they've always said that I will probably need medication like for life because my hormone was so high originally. Um, so I don't know if that still stands with a tumour, you know, most of the tumour gone or whatever.
SPEAKER_00:But yeah, well, the tests in a in a few months or whenever will I guess tell you much more and and you can plan that journey then, can't you?
SPEAKER_01:So Yeah, exactly.
SPEAKER_00:Did you have you noticed in that week or so? It's amazing to say that, but in that week or so since you've had that surgery, um, have you noticed any changes? Some people notice like their hands and feet start to uh lose the swelling. Uh the facial features can return a bit more back to normal. Have you noticed any of that yet?
SPEAKER_01:Yeah, my nose, my nose has gone back to normal.
SPEAKER_00:Wow.
SPEAKER_01:Like it's yeah, it's incredible. Like you think, wow, like it was only a week ago. Uh um, but yeah, so my nose is like kind of a normal, a normal s normal shape, a normal size again. Uh my hands and feet I haven't noticed so much. But the other thing I noticed this morning, actually, was that um my energy levels were lifted.
SPEAKER_00:Okay. Yeah, that's a big thing. And I and obviously surgery knocks it out of you, so it's Yeah. Okay. Well, that's that's fantastic news, Rachel. And I think anyone listening to this will be very pleased for you. And it's very enlightening, I think, to enlightening is not the right word. I think it's uh what's the word I'm looking for? I can't think of the word I'm looking for. It's cut comforting, I suppose, to think that the surgery doesn't always have to have a set of complications. For for most acromegalics, it is a case of up out, uh possibly some medication, but possibly not as well. So and and and this is why the early diagnosis is so fundamental, because the longer it's in there, the more it can wrap round the optic nerves and the carotid arteries and um be and it become much more difficult to remove it all. So um that's fantastic. And looking back at your pictures, you've kindly shared some pictures which are up on the AcroTales website. If uh people are listening want to go and have a look. How has that impacted you in terms of when you look back? Can you see a sort of drastic change or or how do you feel about it?
SPEAKER_01:Well, I I I guess day to day I didn't other than my wedding rings and my shoes not fitting very well, but um I hadn't really noticed my facial changes until I did those pictures for you.
SPEAKER_02:Okay.
SPEAKER_01:And then I was like, oh, look, because I was thinking, oh, I don't think I've got very many. And then I I did it kind of like they'd said to me that my tube had been there, they reckoned for about eight years, between eight and six years, I think they said. Um, and so I thought, well, I'll do a nine year span and see what it see what I was in like nine years ago. And um I thought, oh, actually, yeah, there is there is changes for sure. I think um, like day to day that hasn't really impacted me because they have they're not really extreme. Um the only thing I was really I was I was really upset about my wedding ring because um it was like almost, I mean, on our wedding day, my husband couldn't fit my wedding ring on. So within three months of buying the wedding ring, he struggled to it's it was starting to, you know, my bones were starting to stretch then. Um and that was a bit gut-in because I was just like, you know, you're married, you kind of want to wear the ring, uh, we spent money on the ring.
SPEAKER_00:Yeah, and you're thinking, why doesn't this fit anymore? You know, it doesn't it it doesn't make sense, does it?
SPEAKER_01:Yeah, and it's like you know, you have you've you know you can fluctuate in weight changes, of course you can, but I hadn't fluctuated that much. And I thought also like I kept saying it's my bones, it's my actual bones that are it's not like that and I kept like showing people, look, it's my bones, my bones have gone weird. Um, and of course, no one we just didn't think anything of it. Like I just thought I was a bit weird.
SPEAKER_00:Yeah, yeah, it's it's it's amazing how it can impact on just those little things. So uh and and did the doctors ask you to take in uh uh some photos or your endocrinologists? Because sometimes they do that because they want to see the change in appearance.
SPEAKER_01:Yeah, they did, and at the time I was like, I don't think there is any. So I didn't really show I showed them my wedding ring, uh uh, but other than that, I didn't really show them any photos because I hadn't really thought there was any. And it was only until I met until I met the surgeon, the surgeon said, Oh yeah, you do look like you've got you you do have a a look of acromegly, and I was like, Oh, what does that mean? But then when I looked at the photos, I thought, oh yeah, he's right, actually. I do have some wider features, like my nose in particular.
SPEAKER_00:So since your diagnosis, you've um been proactive, I think, in the last uh year or so or six months, you've been working on a sort of video podcast, is that right?
SPEAKER_01:Oh yeah, I've been doing a YouTube channel. Yeah.
SPEAKER_00:And how and how has that been for you? Has that been a cathartic exercise uh uh in helping you come to terms with it, or is it really you just sort of see it as a sort of information package, as it were?
SPEAKER_01:Um it was a bit of both, really. I think that when I was first diagnosed, I obviously was I looked up stuff about acronymally and things, and um everything that I found was not necessarily really negative, but not very positive, I suppose. And there wasn't anything I couldn't find anything that um this is gonna sound awful, but I couldn't find much with people that didn't have really um changed facial features.
SPEAKER_00:Yeah, the sort of pronounced, you know, yeah, visual changes. Yeah.
SPEAKER_01:Because I thought, oh, okay, this is where it's gonna go. Um and you know, nobody that I knew really knew anything about Acramegley um or what that meant to me or what that meant to other people. Um, and a lot of people were kind of very scared for me, I think. Um and so the f my first video I did was to kind of and I just kind of I think I just put it on Facebook, just so like my Facebook friends, one knew that what was going on for me, because it's hard every time you meet someone to go, oh by the way. Um but also for those people that did know to kind of know that actually I was okay, that like this is happening, but it's okay. Um, and I just did a little um a little thing about um kind of what it was, what it meant for me, what changes I had been through, um, and kind of what was going to happen in the future. Um and I had such like positive feedback from people on Facebook, um, and people wanting to know more and stuff. So I thought, well, I'll just I'll carry it on. Um, and kind of every time I have an appointment or you know, have an update of something or other, then I can um put that on. Um and then I thought, well, I'll do it on YouTube so that it gets a bit of a wider audience, and so that people like me who are looking it up can think, oh, okay, here's somebody like, and it's really amateur.
SPEAKER_00:It doesn't matter.
SPEAKER_01:Um well, yeah, exactly. And I I guess that's part of the point of it. And actually, I've had um some people feedback from actually different countries and um from uh you know from the UK and stuff. Some people are giving me advice, some people are asking for advice, um, all sorts. So it's been really positive.
SPEAKER_00:Yeah, I mean we hear this so often, and you know, with rare conditions uh as a whole, uh those that are uh that experience it so often want to give back. And I don't think it is a I don't think it's catharsis to help you deal with it. I think it's just the nature of well, bloody hell, I was in this situation three, four, five years ago. Someone else might be in this situation. And if if one person is sort of reassured or you know understands their condition a little bit more, then it's worth doing. And and you know, in the days of video recording on your phone, YouTube, Facebook, etc., and the whole you know, social media world, it's not hard to do that anymore. And and that's exactly why I wanted to do this podcast because this is a uh uh this will become a growing library of different voices, some that have had it for 20, 30 years, some that have recently gone through surgery. And and that resource for people to come and access, I think, is fundamental. So you know, I think it's brilliant that you've taken on board uh the desire to want to be an advocate and to share your story and to help others. I think it's commendable. So really well done.
SPEAKER_01:Oh thank you.
SPEAKER_00:So, Rachel, if you were um talking to somebody now who's just been diagnosed with acromegaly, what would be your tips, your you know, your bits of advice? How would you how would you support them?
SPEAKER_01:I think the first thing I would say is don't panic. Like this doesn't have to be this doesn't have to be your life, it doesn't have to consume you, um, if that makes sense. It might do for a few months and it has you know it has done for me. I haven't been at work for a little bit because of medication and and just trying to get used to things, but um but I will be going back to work and I'm planning on having a completely normal life again after kind of I've recovered from my surgery. Um I think like just talking to people and trying to find out information, um, but from the right places, I think sometimes a Google search isn't always the best option. Um, but it's all we've got, really.
SPEAKER_00:Um it's great that you've um engaged and been proactive in sharing your experience and telling your story. And Rachel, it's been absolutely fascinating talking to you, and especially I think for those listening, talking to somebody that's literally come out of surgery, you know, a week ago. So thank you very much for sharing your story. It's been um absolutely amazing.
SPEAKER_02:Thank you.
SPEAKER_00:And we're really grateful. And if you found Rachel's story interesting and you want to hear other Acro Tales, head over to Acrotales.com where you can find the ever-expanding library of interviews. And of course, should you wish to subscribe to the podcast to receive the latest updates, head towards iTunes, Spotify, search for AcroTales, and uh you can click the subscribe button and get them pop up on your app. So this is me, Dan Jeffrey, saying thank you very much to Rachel and thank you for listening, and we'll see you on the next episode of Acrotales.