AcroTales
AcroTales
Episode 7 - Mike
In this episode of AcroTales we talk to Mike from London in the UK. Mike was diagnosed only a couple of years ago but has been on quite a journey since his diagnosis, and talks in depth about treatment, medication and radiotherapy. As well as this, Mike also discusses how he used various coping mechanisms throughout and the help provided by The Pituitary Foundation.
Hello and welcome to AcroTales, a regular podcast that explores the fascinating world of acromegaly. 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 their journey with this unique condition. It's episode seven, and I am really pleased to introduce Mike from North London. Mike is 53 and was diagnosed with Acromegaly towards the end of 2017. Mike, welcome to AcroTales. Thank you very much. Thank you for having me. That's fine. Now, just to give this a bit of context, we're doing this interview in very strange times because we're right in the middle of the coronavirus pandemic. So we're both working from home. I hate to say we've got oodles of free time on our hands, but it seems like an opportune moment to record a few AcroTales. So I'm really grateful to you for joining us. Mike, maybe you would like to just tell us about your initial journey with Acromegaly. What were the signs? How did you find out you had it? All of those kinds of things.
SPEAKER_00:Thank you. Yeah, so as you just said, I've um it all started at the end of 2017. I'd I've been wearing glasses since I was about five, I think. And um I was just beginning to have I'd had some new glasses about a year earlier in 2016, but I'd just been starting to have some problems with my vision. It didn't help, to be honest, that I had actually sat on my glasses. So that was part of the problem. But nonetheless, even after they'd sort of bent them back into shape, I thought something not quite right here. So um although I'd had a sight test the year before, uh, and actually there'd been a bit of strangeness there. They'd um when I got my new glasses, they'd um they'd given me a peripheral vision test. Uh they'd said there's something a bit wrong here. So they redid it and and it was fine. And they said, oh, maybe that was just the machine or something. So there was a tight question mark then. But then in 2017, when I when I'd been having these problems and went back, uh they tested me again and and I repeatedly failed the the peripheral vision test. So obviously they uh they referred me to my GP, who then referred me to the local hospital up here in North London, and I I saw an ophthalmologist, I think that's the word. Um and so I went for for an MRI scan at another hospital in the same trust on my head, obviously. And um and and and then we came to sort of December 2017 while everyone else was sort of um thinking, beginning to think about Christmas, but for for me and my wife, it was our big sort of results day. I think we were sort of aware that uh there might actually be some real problem here, but we just had the nice holiday over um in October and and and with this sort of at the back of our minds, but now we're all geared up. Um my wife took some time off work, so did I. We went along to the hospital, uh, saw the ophthalmologist after the normal sort of wait. Um, and uh she said, Oh, yeah, you had your MI scan done at a different hospital. Uh unfortunately, but I haven't got the results. So um so we said, but yeah, we have been waiting for a little while. This was quite a big day, we all took time off work. She said, Well, I should think it'll all be fine. Um and but you know, if it's not, I'll I'll let you know. So um uh yeah, I uh and then the next morning, Friday morning, I'm sitting in uh lying in bed uh thinking about maybe going to work at some stage. So it's quite early in the morning. My mobile rings, and um, and it's this this ophthalmologist from our local hospital. And while I'm lying in bed, she says, Oh, actually, um, we've got found your MOI scan, and in fact, it showed there's a large mass in your head. Um, now obviously I had no um, well, not obviously, but I had no awareness even of where the pituity gland was, never heard of it. But obviously, the first word she says, um, you know, big big mass in your head. Um, you obviously you think, well, does that mean obviously, you know, that I've got some sort of um cancerous tumour and and and you know this is the end? Uh and she said I think at that point she probably sort of gave some idea of what it might be, but then the the important thing was she said, I'm gonna get some one from the Royal Free Hospital, uh, a bit further into North London to to call you an endocrinologist. And and when the endocrinologist phoned up very quickly um and talked me through various questions, um, in particular asking about my recent medical history. Now, I've I've never had anything sort of uh seriously wrong health-wise in the past, but over the sort of previous few years I'd been um uh I'd been aware of of you know very various sort of one-off things, but as is always the way, you go to the doctors, you see a different GP every time, they treat you for the the issue that you've appeared with. It's not like some episode of house, you know, where they uh where they sort of you know they get 10 doctors together and look at all your symptoms and think, wow, this man's got acromegaly. So um no, and obviously, you know, I was getting older, so I was 51 at the time, I was overweight, and and I put some of these things down to um down to those things, getting older, um, not being very fit. Um so the yeah, the sort of things I'd been struggling with. I'd I'd had some problems with anxiety, I'd had problems with loss of libido. I'd actually even been to a uh a breast clinic at one point because I was having some strange feelings in that region of my chest. Really? That was an unusual thing to do as a man, obviously. Um I'd had some problems with sweating again. That, you know, thought, well, maybe I'm I'm um, you know, just getting fat.
SPEAKER_01:Well, that could be yes, and that's could do with being overweight and things like that.
SPEAKER_00:Indeed. Um, and and then there were other things that were more classically acromegally related. I realised some of the above could be as well, but I'd had some skin tags removed, I'd had um my wedding ring cut off only a couple of months before, not because I didn't want it anymore, but because it was it was it wasn't fitting anymore, much like um Rachel, who you spoke to recently. Um I'd had problems with my shoes, um some some shoes I bought quite recently didn't seem to fit anymore. I'd had a half lump on my chin, uh which had appeared, and also a small gap in the in my uh lower range of teeth in the middle. So um I think based on those things, this endokinologist uh uh could tell you know that there might be some problem uh relating to aquamegal um and uh also possibly another um hormone as well. She I think there was some urgency though because uh I was presenting as a new patient and um and I obviously that there could have been some more serious um hormone issues, cortisol or whatever. So but she I mean, obviously, you know, this was like within half an hour of even being told I had something in my head. Suddenly she said, get in a taxi as quickly as you can in case of the Royal Free. There was a real bizarre sense of urgency about the whole thing. So my wife and I jumped into well, ordered a taxi, jumped into it, went up to the Royal Free, which is probably about three-quarters of an hour's drive away. Um, even while we're in the taxi, um, I was sitting in the front seat and the registrar phone several times saying, Where are you? Where are you? So there was I mean it really was quite yeah, it was like you know, it's very unreal. Yes. And I did think, well, you know, whatever this is in my head, I clearly had it last week and the week before, probably for some time. So it doesn't seem that important that I get there within the next 10 minutes. But uh anyway, um the the obviously I got there, I I saw the registrar, and over the next um few days, uh so actually she actually fitted me in for another MOI scan that day, which was more detailed. I had blood tests and things. Um the first thing that they told me quite soon was that my prolactin level was was very high. So the normal range for a man of my age was 86 to 324, and my level was 19,534, so that's about 60 or 70 times the maximum level for a man of my age. Um my testosterone level was 0.9, which um whether you know exactly, I mean it's it's it's low for a woman, um, whereas the um the level for a man of my age um starts at 6.7 and goes up to 25.7. So again, I was about a tenth of uh of what I might have expected to be. Um so they diagnosed that I uh I had a macro prolactinoma, so a large uh adenoma, and particularly that it was secreting the prolactin hormone. Um obviously that's not uh acromegaly, as as you well know, but um unfortunately they uh they something went wrong with the IGF-1 blood test, which is the one that that gives them some indication of um of acromegaly. So I had to have another blood test for that, and I didn't get uh that particular result back until um January when they said yes, your IGF levels are high. Um and um they gave me a glucose tolerance test, and um and that was how they diagnosed acromegaline. Now they put me on K-bergeline, K-bergoline, no, no one seems to know how that's pronounced. Anyway. Yes, anyway, they put that me on that, which I think was primarily for the prolactin, but can also help um sometimes apparently with IGF, with um growth hormone problems. Um but anyway, but by by then I I had an idea what acromegaly was. So unlike some of the people you've interviewed who you know were quite pleased to have a name for their condition, I was the opposite in that I knew what acromegaly was. I understood that prolaxinoma might be more treatable um just with medication, just with kbergoline, kbergaline, whatever. Um, but um but but if I had acromegaly, it was probably um, you know, something that might be more likely in in down the line to require um intervention in the way of um well, firstly, needles, which I hate, um not that anyone loves them. Uh secondly, obviously surgery or and thirdly, possibly radiotherapy. But um at that time I thought, well, I didn't don't want acromegaly because I don't want any of those things. Um and as as as I'll say later on, actually I have now had all of those things, and and each sort of step has been like a new sort of disappointment as you know as each of those things has has become necessary. But no, at that time when when they said you've got acromegaly, that was not um that was not uh good news. So um so I started having um as I said earlier, Dan, I do talk quite a lot. So if you want to enter up.
SPEAKER_01:So I told you.
SPEAKER_00:I had my first Lanreotide injection um and um started up, you know, one of the lower doses. Um again, like like Rachel before me, I um on your previous podcast, I I I didn't react very well to that. Uh, both ends of my body was struggling. Um so they put me on some creon tablets, and um since then um the the the effect of lamriotide has has been a lot less severe. I mean, I was uh um I mean it's not very pleasant, but for the benefit of the you know educating anyone who doesn't know about it, I I was doing very sulfurous belches, um, and I was uh yeah the farting uh you know um quite a bit um and um uh and very smelly at both ends. So it was it wasn't good. Um that's been not not nice, that's been um, as I say, um considerably better since the family don't complain so much anymore. I I should say I have I have two um two daughters, both both of them at the time were away at university, so at least they didn't have to put up with that all the time, although I think by now they were they were back for their Christmas holidays. Um well one thing I would say is that um uh person who's been very key to the whole procedure, who I sort of met in those early days and um is still key now, is is is a specialist endocrine nurse down at the World Free called Judith, who um is is very helpful because she explains things and takes time to explain things. She also makes things happen. So sometimes, you know, if you're thinking, well, I was expecting to have that particular test or that particular scan or that um if I go in for my monthly um injection and it happens to be Judith who gives it, you know, you sort of mention that and she'll say, Oh, and you'll think that she's been taken that in, but she does always take it in, and then something invariably happens. You know, you'll then get a letter just a few days later saying, Oh, this scan's gonna happen now, and you think, well done, Judith, thank you. So, and very kind as well.
SPEAKER_01:Nurses are just an incredibly vital part of all of this because when you go and see your endocrinologist, when you maybe you've first been diagnosed or follow-up procedures, they're they're very much, and we've discussed this before in podcasts, they're looking at the numbers, they're looking at the science, and the nurses very much look at you more as the human. Now, I'm not saying endocrinologists don't do that, but nurses are just a bit more on the front line, and they are much more able to, like you said, make things happen, push things along, and kind of, you know, constantly be aware of your treatment and your journey and help you get through it as much as possible. And I had some fantastic nurses during mine as well, both leading up to surgery and post-surgery. So all hail the nurses because they really just play a vital part in this, I think.
SPEAKER_00:Indeed, yes. I mean, as as as you say, given the global context at the moment, we're obviously all very grateful for the NHS and for nurses at the moment. But yes, as you say, for us on our particular acromeguly journey, that's been true for us for a while as well, as obviously it will have been for people with other other conditions as well. So there's a yeah, there's a sort of a divide that I don't quite understand between the Royal Free and Um the National Hospital for Neurology and Neurosurgery, which is generally known as Queen Square, which is a hospital in the centre of London. And um the Royal Free um arranged for me to go to Queen Square and see an endocrinologist, another second endocrinologist who had some sort of uh jewel role between the two. And um I went to see him in April of 2018. Uh, he called in a neurosurgeon from the next room who'd obviously been pre-warned, and they'd seen my MOI scans, and um they told me that after two laminotide injections and the k-bergling that I've been on, it hadn't shrunk at all. And um and and and the IGF levels were also um not going down either. So they they said we we think uh you're gonna need neurosurgery. Um and again, as as I said earlier, that was that was the next step that I didn't want to take. I was hoping that you know they'd carry on giving me land rear tide for a lot longer and and miraculously it would all shrink. And uh, but anyway, so my wife and I went out, sat in in the actual square outside the hospital, and I remember just crying quite a lot then because I thought um yeah, that's that's not what I wanted to hear. Um I had surgery uh when I eventually had it was in June 2018, so a couple of months after that. My I mean again, um seeing some of your other podcasts recently and some other videos on YouTube, um some people go into that remarkably calmly, neurosurgery, as I learned from watching other people's things. I didn't, I was um uh until sort of maybe a week or two before, I was convinced that um that either I would die or be brain damaged. Um obviously that is a r it's a very small risk uh of any sort of neurosurgery, and that's the sort of thing they obviously tell you about. But I did um a week or two before, I when I had a sort of pre-op um discussion with the neurosurgeon, he was he was great. He he taught me through the sort of risk element, you know, the actual percentages and things. And and obviously, you know, the things I've just mentioned, death and and brain damage, are minutely unlikely to happen. Uh even the sort of risks, you know, things that can happen uh are relatively unlikely. Uh, you know, the more likely things like C CSF leaks and things and so on, um, or or just being sick or whatever. I mean, you know, they're more likely, but obviously they're not going to they're not going to kill you. So um he he did um he he did reassure me quite a lot. So um whereas I was expecting to find that discussion worrying, actually, um, you know, he made me bit and I I mean I think I mentioned um when we talked before the before this uh interview that uh I I am a mathematician. So I sort of, you know, actually seeing some numbers and and thinking, yeah, statistically, yeah, this is all this is all reasonably safe. Um I I yeah that did actually reassure me a bit.
SPEAKER_01:I was gonna ask, I was actually just about to mention you are a mathematician, so it's it's um it must be quite a challenge really to be given all of these numbers, figures, possibilities, percentages, and things like that and weigh it all up. But at the same time, maths can't necessarily quantify the human reaction, which is that you still know you're going to be put to sleep for a period of time, and you still know you're going, you're they're going to perform surgery on you, and there's still no uh guaranteed outcome. So it if you have a mathematical brain, maybe I don't, I have a more artistic brain, and I'm like, well, just yeah, get on with it, it's fine. Maybe maybe those with a more analytical mind have to weigh up all of those pros and cons pre-surgery.
SPEAKER_00:That's right, and I and um I I think also I am a fairly glass half-empty sort of person. So um I I think also the the other thing was that um um sorry, I forgot what I was gonna say. Um yes, my brain. I mean, yes, you you mentioned brains, yes. Uh I think I was aware that um that that that was my greatest asset, you know, um, in terms of the things I can do. So the fact that they were operating on you know something very close to my to my brain was was made me think, you know, if I if if if somebody has been done. Yeah, exactly. Yes, no, no, I'm not going to be become a model as a male model as an alternative career, um, if if if they if they damage my brain. Um so so there's an element of that. Anyway, um let's uh I'll stop focusing quite on the negatives. Um I was fortunate that through my work I had um I did have some medical insurance which uh covered me for this. And and the main reason I used it at this point, which I hadn't done previously in my journey, was that my actually my elder daughter was about to take her university finals at the same time. And um uh because I was being pessimistic and assumed it would something bad would happen, I thought, well, I at least want her to have um to have done that. So I arranged it for immediately after uh that happened. Um so yeah, so I had the surgery um at a private hospital. I um I just remember that immediately before um they put the thing in my arms, send me to sleep, and just thinking, actually, I want to go and say bye-bye to everyone one more time, and thinking, you know, this might this might then thinking, no, that's not really it's not really a great idea. So I um but I just and then you know the the next thing obviously you remember is or you're aware of is is someone saying hello, hello, and you and you sort of wake up and think, I guess it's actually happened now, and and just you know, and and I was able to think, yes, I I know who I am, I know why I'm here. Um big pearly gates or no, that's right. My consciousness is still here. Um I guess they must have actually done this. I felt my nose and I could see that there was something sticking out of it, so I um so I guessed that um one of the things they'd suggested might happen, which was a a CSF leak had happened, and indeed it had, and they'd had to patch me up a little bit. Um so anyway, I went back to the the the the room um that that I was in and um yeah I was quite for a while afterwards I was quite sick and um disorientated while I obviously appeared and um uh and after a few days I I went home. Um I had a thing where they took out the the the stitches that from um yeah so so in order to patch up the CSF leak, which um uh yeah, it's is some sort of fluid uh round your brain that can come out, can leak a little bit when they do this sort of work. Like they generally, as you probably know, take a some some uh flesh from your from your stomach, and they did that. So I had a wound there which they had to take the stitches out of. It was remarkably difficult to persuade my GP that they could well that they would book me in to actually have that removed, uh, which was a bit uh dis uh dispiriting. But anyway, we we did get that done. Um I I was actually um I was separately ill at the time with with with some other problem, but I think it probably I was a bit um you know uh uh susceptible to that sort of thing. Okay. Um and I was off work for about uh six weeks and then gradually uh went back. The neurosurgeon told me at the time that he he was hopeful he'd removed it all. I mean, obviously they can only um Did they tell you how big it was? Yeah, it was some kind of fruit. I mean, as I said before, it was a macroadenoma. Uh my wife and I both have a vague memory of a plum. Um pretty large then. Yeah, peach or pineapple. No, I thought it began with pea. I think it was a plum. Um and um yeah, so but but actually that was one thing that going back to the maths and everything, that was was one thing he'd reassured me with. Because I obviously the fact that it was macro rather than um micro had made me think, you know, crumbs I'm right at the top end of the scale. This is going to be an exceptionally difficult surgery for anyone to perform. So I did ask him about that. I said, you know, is this is this sort of at the top end of the size of tumours you you try and remove? And he said, well, no, because the people I see are the ones who have big tumours, you know, someone with a micro, I don't know, but generally, you know, I I'd be a lot less likely to be operating on them. So he said, Oh, of the people I see, you know, you're probably somewhere in the middle. He said there's even another category beyond macroalginoma, um, giant, or I forget what the word was, but apparently I wasn't even in the top category of being macro. So that would sort of reassure me that I was somewhere in the middle. He was I was the sort of typical patient that he would be um operating on. Yeah, so as I say, he thought he'd removed it all, um or so he said at the time, although yeah, it's hard to tell obviously from that little camera they stick up your nose. Um and in fact, um, you know, it it turned out that um because it w it it was very large and there were bits sort of wrapped around and obviously the thing was it was pressing on the optic nerve, so obviously that's where I'd failed the peripheral vision test, particularly on the left-hand side of my head. And and and obviously they have to be careful with with with all this with that and with with arteries and things, and and also I think there are various bits that sort of go out into side cavities and things, and uh he he couldn't know for sure that he'd removed it all, and and time revealed that it that he hadn't. So after the um after that and after recovering, I I continue to have various tests. So probably again the sorts of tests I'm I'm sure that you have to have, because obviously acco-megally affects all your organs, uh particularly your heart. Um so I had to have various types of uh tests on my heart. Um ECGs. Yeah, there's echo and yeah, there's two things that begin with E, aren't there? I can't remember them both, but I think I've had both of those. Uh colonoscopy, which obviously is is a lot of um Did that reveal a lot of polyps? No, uh so the uh I had a liver MRI that did show some polyps. Uh they decided eventually that was something called the benign hemangioma. The colonoscopy, I think, uh was relatively clear. I think that there's something in my gallbladder as well. Actually, maybe that is where the hemangiomas were, or maybe there were polyps in the liver and the and the gallbladder. I mean, the the yeah, you you you sort of get, I mean, again, you've probably been through this. You go through that sort of whirl where they just want to test sort of almost every part of your body, and it just suddenly seems that what started off in your head is you know, it is now just some sort of thing where you're going from one department to another and so some day times even on the same day.
SPEAKER_01:Well that's when you realize sorry Mike, I was just saying that's when you just realise uh uh how much the pituitary gland uh impacts on you know the rest of your body. And that's why they call it the master gland in terms of you know the hormones you produce and uh and everything that's controlled from it.
SPEAKER_00:No, absolutely. I mean it's it it's it it was it really was a lesson, and obviously the the Peturitary Foundation charity, you know, they they produce a lot of wonderful stuff online that you can read to to educate you about all of this, and that's that's Did you did you contact them at any point for support or uh yes, I did use their resources?
SPEAKER_01:Okay.
SPEAKER_00:I did so um yeah, so uh at one stage my wife and I went along to one of their meetings in central London, but I also contacted uh them and and and asked if they had a telephone buddy who who had acromegaly, and they put me in touch with a a man up in in Merseyside somewhere. He'd actually had his surgery uh in the early 90s. Uh well, sorry what his name is, but I I do remember. But um, so actually he'd had um, you know, he hadn't had the transphenoidal thing uh uh that I'd had. I think it was a bit more invasive, his surgery, and and also, you know, but it had been sort of 25 years earlier, so obviously a lot had changed uh since then. And um, yeah, so but yeah, so I contacted them through that and and um uh and yeah, actually uh some of my friends uh went on a uh uh the London landmarks half marathon uh in in the early days of of my um of my journey uh to raise some money for for the Petutary Foundation as a way of sort of supporting supporting me, which was uh which was nice. Anyway, yeah, so through 2018 it proved that my IGF levels hadn't gone down um even after the surgery, so I had to resume um the K-burgoline, uh resumed the lammetide injections, which over time actually went up to the maximum dose, which is 120. I'd started on 60, gone up to 90, now I was on 120. The other thing that I was allowed to have, uh this relates to the testosterone shortage, was um a medication called Tostran, which is uh a gel that I yeah, I I so I rub on, rub that either onto my thighs or my stomach uh every day.
SPEAKER_01:And can I can I just ask though, two, you know, let's say you're what two and a bit years on from diagnosis, do you do you feel a marked difference? And and and I'll also ask, do did you notice uh a diminution or a decrease in your character, health, well-being, general demeanor on those years building up to your treatment? So do you feel do you notice that you know those specific changes in your journey?
SPEAKER_00:I wouldn't say um I wouldn't say hugely so. Um so um, I mean, most of the physical things I've described are still uh still present to some extent. I mean I haven't haven't yet had my wedding ring refitted. I've still got a lump on my chin. Um I still probably uh sweat uh a lot. I haven't had to go back to the uh the breast clinic, but uh and I still get skin tags. So um the next step is that I I did have to have radiotherapy because you know hadn't cleared up the problem. Uh that that was something I had in in early 2019, so about this time uh last year. I'd had some different um some different guidance there. The Royal Free seemed the endocrinologist I saw there. Seemed less keen for me to ha go ahead and have radiotherapy. But the people at Queen Square, the multidisciplinary team, MDT, they seemed to want that. And eventually I could see that probably that was the right thing to do. In terms of sort of my risk aversion, which I do have, I mean, the sort of pattern for radiotherapy did seem quite different because for the surgery, I was aware that, you know, once I woke up from the surgery and, you know, and and I could remember who I was, that was most of the risk out of the way. Whereas with radiotherapy, the sort of things they talk you through are more scary because they're more long-term. So they talk about, you know, 10 years down the line, this could happen, that could happen. Um, and and I mean the sort again, you know, I wouldn't want to put people off who were who were faced with the possibility of radiotherapy. And obviously that the, you know, I did decide to have it despite the risks. But some of the risks they talk about are, you know, feel a little bit like time bombs in in your body, uh, and things that might happen in future. And um and and you know, I just have to live with that now. But eventually, so it was December 2018, they decided yes, I would go ahead and have that. And then I had 28 days of radiotherapy at University College London Hospital in February and March 2019. Um, and that was really quite a sobering time. I mean, obviously, um uh what while what I have is you know, well what we both have is is is serious. I mean, obviously it's it's not um it's not cancerous and um and while it's sort of life-threatening in terms of the secondary things it can do to your heart or your colon and things, um uh you know, though the the people I saw uh, you know, down in the radiotherapy unit, other people who are obviously very ill with cancers and and children with their parents and things. I mean, that was just you know, you just felt so much for them.
SPEAKER_01:And and um of course, yeah, it puts into perspective your own situation, doesn't it?
SPEAKER_00:Absolutely. So um so and and again, as as you were saying about nurses, I mean the the the radio radiographers, I I'm never too sure about the the names of each role, but the the people who on a daily basis give you your radiotherapy, I think they're radiographers, they were lovely as well. I mean, obviously they were used to dealing with people a lot more ill than me, uh, children uh and whatever, uh, but nonetheless, you know, treated treated me uh very well for those 28 days, just as I'm sure they they do everything. Um, one thing I did want to mention just by way of uh slight relief is that one thing I'd found um sort of I mean it's a little bit obsessive to some extent, but uh as a way of sort of keeping control, particularly in the early days of of all of this, when you're just suddenly getting letters from um this department, that department, this hospital, that hospital, and um and you're just thinking, I don't I can't remember all these appointments things. So I just started keeping sort of meticulous folder of of all my letters, all all the notes we'd written every time we saw the anyone, um, and the questions we'd asked and things. And um I mean, this is the sort of person I am anyway. I I keep all these things as though they're going to be useful, and then very rarely refer to them. But during the ski sorry, go on. No, go on, no, go on.
SPEAKER_01:I was gonna say it's just it's so useful to and I I think this is empowering to anyone who's listening, who maybe starts on their journey, is to uh regard uh not acromegally specific, but any time you're diagnosed with something, is to keep that log, keep those records, keep those notes, translate things that you may not quite understand into your own way of being able to cope with it and and being able to refer back to it. So I was going to ask you what your piece of guidance was, and I think that's I think that's your answer, I I would imagine, is to you know track it, own it, uh, you know, keep it.
SPEAKER_00:Yeah, I mean I I think that works for I think that works for some people, certainly my sort of mentality. Um I I certainly took it to extremes, and I wouldn't I wouldn't necessarily recommend that people do this, but this was this was mildly mildly humorous that in that um the first day I went in for my radiotherapy, um, I mean obviously you don't know what's going to happen. They put the mask on you, it's all a bit weird, you're lying down on the um on the table and things, and so and and mu music comes on to sort of make you feel a bit at ease. And um I was just aware that um this song that was playing, um, well, they were put um putting me into the tube, was a song called I Don't Wanna Live Forever. And um and I thought I I did think that was mildly amusing. So I went back and it was a little bit. I I you'll be I'm sure you'd be interested in know it by Zane and Taylor Swift. But um anyway, so I made a note of that and thought it was funny. And I I'd been keeping a sort of um uh I mean not quite a blog, but on Facebook I'd been uh I created a little group because I yeah, I realised not everyone necessarily on Facebook would want to read me to whittering on about my um my pituitary tune all the time. So I I'd made a sort of a group that people could could sign up for. So I I I was sort of um i as a way of uh of sort of uh keeping myself sane, I was I was telling people what uh what music I'd had on any given day. But I was also writing it down in my in my little notebook, and that was that was day one, and and later on they let me um they let me choose some of the music, which was nice. Anyway, so I went back to Queen's Square after the 28 days, a few days later. Um I think they'd given me an MRI scan by then. They were pleased, uh, the nurses very pleased that um actually that they could see some shrinkage already, even after just a little uh little while um as a result of the radiotherapy. Um they said that was unusual to see it that early. And again, being glass half empty, my immediate thought was not one of joy, but oh dear, I've been overdosed. Um I'm at you know, thing things clearly they've given me too much radiotherapy, and it's not it, you know, I I want to be somewhere in the middle of the curve rather than the the one who reacts ever so quickly to it. But I I I guess that's a good thing. Um and and although that's nearly a year ago, um, you know, since then I've sort of been more in a holding pattern. So I continue to have the cabergoline, I continue to go for monthly injections and and have the tostran. Uh, and if every six months or so I see um I see the endocrinologists of the one that's coming up in April, I was hoping would be a real sort of, you know, this is where yeah, yeah. Well this is where we are now, you know, we've we've taken your blood tests, you know, you're a year on, this is what's going to happen now. And I've got all sorts of questions I was going to ask. Um, you know, do I need to carry on having this? Do it will this happen? You know, what and obviously um a lot of that probably won't happen. I may not have the appointment at all. Certainly the blood test, which was due for next week, has been cancelled. Um, although they still want me to go in for the for the injection, although that does require me going in on the train. So it's um it's a little bit dubious. I might might try and find some other way of getting there. Anyway, that yeah, I I want I want this to be sort of you know not focused on the COVID-19, but those are some of the practical things that you think you only get to see these people every six months if you're if you're lucky, and you sort of build up to it, and obviously some of that might not happen. So I'll probably stay in this holding pattern for a while.
SPEAKER_01:And there are people that are having their surgery cancelled because you know it's whilst it's it well, it's not it's non-essential compared to everything else that's going on in the world right now.
SPEAKER_00:So um it it is, but it doesn't fit it doesn't feel that when you're the person who's gonna finish.
SPEAKER_01:No, absolutely not meaning absolutely, and um no, yeah. All right, well look, Mike, I mean, I have to thank you. That's an absolutely thoroughly forensic uh explanation of your journey. No, it's absolutely fine, and I think it's hugely useful to go into such detail sometimes. And you know, there will be people tuning into this podcast who have um maybe just been recently diagnosed or perhaps going to undergo the radiotherapy sessions or the medication, and you've been able to explain what you've been through. But I think also, you know, at the same time, whilst you've confessed to being a glass, half-empty kind of guy, I can hear from you that you sound sort of sane, hell uh well, healthy, motivated. You know, you have your family around you and friends, and you know, that's the thing that a couple of years ago, when you were just about to go into life, you may have thought you had lost all of that. So, you know, I think that's the positive that you can see from this is that nobody wants to be told that they've got this tumour or this huge adenoma in their head, but you can come out the other side and and even with the quite complicated, challenging journey that you've had, you know, lead a regular, pretty normal life. So uh I'm very, very grateful for you joining us and thank you very much for sharing your acro tale with us.
SPEAKER_00:Thank you very much, Dan, for having me. It was been a pleasure.
SPEAKER_01:And if you found Mike's story interesting and you want to hear other AcroTales, you should know what to do by now. Head over to Acrotales.com where you can find the ever-expanding library of interviews. And of course, you can also subscribe to the podcast to receive the latest episodes via iTunes, Spotify, and your uh podcast app on your phone or device. So, once again, a huge thank you to Mike, and I look forward to seeing you next time on another Acro Tale.