AcroTales
AcroTales
Episode 13 - Spencer
In Episode 13 of AcroTales, we speak to Spencer in the UK. Spencer was diagnosed by a chance encounter, and talks about his experiences of diagnosis and how the condition impacted on his life.
Hello and welcome to AcroTales, a podcast that explores the fascinating world of acromegaly. Acromegaly is a rare condition caused by a benign tumour in the pituitary gland, causing an excessive release of growth hormones. My name's Diane 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 13, and I am really pleased to welcome Spencer from Shropshire in the UK. Spencer is 50 and was diagnosed with Acromegaly in 2014. Spencer, welcome to AcroTales. Thank you very much, Dan. Now we know each other from uh previous Acromegaly meetups and also the UK the UK Acromegaly uh Facebook group. So I'm really, really pleased to have you on here and to have you share your story. So perhaps you could start by just telling us how you how you were diagnosed, what were the signs, and how did you eventually lead to a sort of an actual diagnosis?
SPEAKER_02:Um yeah, uh I suppose around about October 2013 I started having trouble with breathing. Um I went to the hospital in November 2013 and I was diagnosed with heart failure, and it was it was spotted um basically because the because the heart grew, um, but I didn't know at the time. And um I was I was roughly diagnosed um by a consultant that was walking past me while I was in a waiting room. Um yeah, yeah, he he asked me um first of all he asked me if my features had changed. Um you don't really know that. Um he also asked me um if my hands had grown. Um I I explained that I'm from Shropshire, we have big hands in Shropshire. Um and then as he was walking away, I told him that my feet had grown um about four sizes in a space of six years. And that's when that's the first time I heard the word acromecromegaly.
SPEAKER_01:So did he literally do like do a stop and then a sort of an about turn and came and talked to you, or did he?
SPEAKER_02:It was literally like a double check, um, a double glance. He was eating a sandwich, uh, just walking past. He had nothing to do with me whatsoever. I don't know who the man was. Um, I'm assuming he was a consultant. Um I I haven't seen him since.
SPEAKER_01:Um amazing that he didn't follow that up. Amazing that he uh really he he sort of passed that information to you and then sort of went on his way.
SPEAKER_02:He he also he I mean, obviously he um he passed the information on to an endo um to an endocrinologist because that's how things started moving. Wow.
SPEAKER_01:So you so you were you were obviously diagnosed with uh was it breathing difficulties you said because your heart had enlarged, which is a complication of the acromegaly organs enlarging. And so how did that then obviously your an endocrinologist got in touch with you, did they, and said, right, we need to do some tests or do an MRI scan. What was the next steps?
SPEAKER_02:Uh the next steps were I think it was the glucose tolerant test.
SPEAKER_01:Okay, yeah.
SPEAKER_02:Um and the um and there was an MRI. I can't remember which one came first, um, but I can remember it was di it was like well, you I was actually diagnosed with about five different things in the same in the same go. Uh diabetes, you know, a lot of the a lot a lot of the things that come along with acromegaly, including the heart failure.
SPEAKER_01:And how was that? I mean, uh as news to digest, was it uh by the time he got to diabetes shock?
SPEAKER_02:Yeah, by the time he got to diabetes, I wasn't really listening anymore. I was kind of I was kind in fact, I forgot that I'd been diagnosed with diabetes until it started coming through with um with with post.
SPEAKER_01:Right. Wow, Spence, that's really quite a quite a sort of slap in the face of things. And and I guess had you been feeling like uh rough. I mean, yes, your hands have changed, your feet had changed. Had you had any of the other signs like the uh impairment to vision or headaches?
SPEAKER_02:A lot a lot of the things. I just I just I just associated with I'm getting older. Um I'd had I'd had surgery on my knees as a 20-year-old and and they started hurting again. Um and I had some back problems, but apart from that, it I didn't really notice anything. Oh, we used when my feet were growing, I always used to think it I I always used I always used to think there was something wrong with my shoes rather than my feet. Right. Um that's how things were noticed.
SPEAKER_01:You don't ever think, well, I'm I'm in my 30s or my forties, and my feet are growing, that's perfectly natural. It must be my the shoes are getting tighter.
SPEAKER_02:Yeah, yeah, we know we made jokes about it, and and again, uh I mean the the sweating. Yeah um I I missed quite a lot of warning signs. I can remember going to see a friend in Hull and I hadn't seen her for about 15 years. And first thing she said when she answered the door was, You didn't go gr you didn't grow older the way I expected you to. Wow. And you know, that was that was that was one of the one of the things, one of the triggers that should have sparked, really.
SPEAKER_01:Yeah, but you you can't uh associate that with having a brain tumour. No, it's just not possible. I mean, I remember people used to say to me that I old school friends didn't recognise me or they'd walk past me in the street and they're like, Oh my god, you look so different. Uh so you you don't you never put two and two together, do you?
SPEAKER_02:No, no, great. I mean, no, well, it became um it became a an in-house joke the size of my feet at work.
SPEAKER_01:Right.
SPEAKER_02:Um and um and I I you I can remember I also used to get called sausage fingers. It wasn't it sounds like bullying, but it was all joking. I used to play um I used to play drums and it got to a point where I couldn't play drums anymore.
SPEAKER_01:Right. So it really did impact on your life then. It was, you know, it was it was maybe small things, but they all kind of culminate, don't they, into into not the kind of life that you want to lead, especially if it stops you being creative.
SPEAKER_02:Yeah, yeah, same. Um same was with football. I I'd noticed there was a difference with my um coordination.
SPEAKER_01:Right.
SPEAKER_02:Uh I know that you get worse as you get older at football anyway, but um it was it was almost like I couldn't time the bounce of a ball or or something like that.
SPEAKER_01:Yeah, no, it's frustrating. I used to play sneaker and I used to get very sweaty hands, uh, and and I couldn't control the queue properly.
SPEAKER_02:Do you know what? I used I put I still do it now, but more out of habit is I put um if I play pool, um where where your your finger and your thumb meet, um I always used to have to put chalk on on there so the queue would slide down, you know, where you take your shot at pull. Yeah, yeah. Um I used to have to chalk that bit.
SPEAKER_01:Okay.
SPEAKER_02:Otherwise the otherwise the the queue would just stick to my hand.
SPEAKER_01:Yeah. It's all these weird little things, and then when you look back, it's you know, it all makes sense. So obviously you were, you know, you're in the system, you uh underwent your MRIs and your and your tests. Um, and so you were diagnosed in in 2014. How long was it until you were in for surgery? I assume you went in for surgery.
SPEAKER_02:Uh yeah, yeah. Um I was I was diagnosed June 2014. I was due surgery in December 2014, but it was cancelled. Right. Um and I must admit the worst time uh would have been before would have been from the cancellation to the actual surgery because I was ready, I was in the bed, I'd got my green my green stockings on. Yeah.
SPEAKER_01:Oh shit.
SPEAKER_02:Yeah, I was I was I was gowned up.
SPEAKER_01:Right.
SPEAKER_02:Yeah.
SPEAKER_01:And so how long was it from that moment until your actual surgery?
SPEAKER_02:Uh 20th of March 2015. So weeks was it, sorry. Um a couple of months, uh, three months.
SPEAKER_01:Yes, it's not fair, is it, unfortunately? But um, I guess that's that's that's the NHS for you. These things happen now and again. And I guess it's normally did they say why?
SPEAKER_02:Was it because there was an emergency case or um I think originally it was because there was a road accident and um and they took the took the surgery time. So, you know, I'm happy to miss for that.
SPEAKER_01:Well, that's it, isn't it? And then you you kind of realize, you know, you could be in so much more of a worse situation. And if you can wait three months, you know your life's not in the balance, you know, you're not undergoing you know, hugely life-changing, you know, life and death surgery is what I'm getting at, I suppose.
SPEAKER_02:Yeah, absolutely. Yeah, I mean if you if you're down uh if you're down the order a little bit, then you know that that no that's the way it is.
SPEAKER_01:And so you get there, you're on the day of surgery. Did they tell you how big your tumour was? That was what I meant to ask you.
SPEAKER_02:Uh yeah, but it was the size of a golf ball.
SPEAKER_01:Wow, so that's definitely a macro adenoma then.
SPEAKER_02:Yeah, yeah.
SPEAKER_01:What's that in inches? Did they I think it's a bit more? Uh I just a couple inches, two and a half. Two inches, two and a half inches, something like that. Okay, that's pretty big. Did they tell you that before the surgery?
SPEAKER_02:Uh yes, they'd uh it was the result of the MRI scan.
SPEAKER_01:Okay. And were you nervous about the surgery itself? Did you absolutely had you undergone any major surgery before?
SPEAKER_02:No, no. Um I spent a few days in hospital when I was about 25 with pneumonia. Um but apart from that I'd never really well apart from spending a couple of days in uh with the heart failure I spent in hospital, um, I'd never really spent any time there at all.
SPEAKER_01:Okay, so you wake up from the surgery. Uh did you notice anything straight away? Did you feel any impact?
SPEAKER_02:I no I I noticed um apart from being extremely thirsty and having a having a having a really bad headache, obviously. Um I um my my eyesight was instantly much better. I could remember I couldn't read a as as I was going into surgery, um, I couldn't read a poster. But when I came back out, because you wait, they can they can wake you up instantly now, can't they? Um it was like my my my vision had had improved immediately. That's amazing, isn't it? It probably wasn't a good thing because I was expecting everything to um to get better immediately.
SPEAKER_01:Right, okay.
SPEAKER_02:You know, you think it's out now, why aren't I better?
SPEAKER_01:Okay. Yeah. And so and so did they indicate whether they managed to get all of the tumour or was there any residual?
SPEAKER_02:Uh there's residual. Um, it's mixed up in scar tissue. They can't even see it through um an MRI scan.
SPEAKER_01:Okay.
SPEAKER_02:But there's there's definitely a pituitary blockage in there somewhere.
SPEAKER_01:Right, okay. And so I guess once they had released you, uh no further complications in hospital, no MRI uh sorry, no CSF leaks or uh no, I was I was very, very fortunate in that. Okay, so you were out pretty quickly. And then uh and I I guess they started to put you on a treatment of medication, did they, to manage the tumour?
SPEAKER_02:Yeah, it took I mean it takes a while to get to get the balance right, doesn't it? Um you know you I I'm on somastatin injections every month. Um that's forever. Um and obviously they put me on cortisone for a little while. I came off that. It took about two years to get me on um testosterone injections. Um it's it's trying to find that balance with the medication, I suppose.
SPEAKER_01:And what does the somastatin do? For people that are listening that may not be aware, what's the what's the purpose of that?
SPEAKER_02:It stops the tumour getting any bigger. It doesn't get rid of it, it just stops it growing, hopefully.
SPEAKER_01:Okay. And and that's a monthly injection. Is it quite a hefty injection?
SPEAKER_02:Is it is uh you know, yeah, it affects yeah, it can affect it uh it affects different people. I mean, through through the Facebook page, you've got some people that can can can have the injection and they're fine the next day. It takes me about two or three days to uh to get used to it, I suppose.
SPEAKER_01:And how do you find the testosterone injections?
SPEAKER_02:Uh testosterone injections, um, don't really notice them at all now. Um in terms of the injection, you mean? Uh in terms of the injection, uh, it's just a routine every three months now. Um but I don't get um I don't get as much fatigue as I used to. Um and I don't get I mean we we call it uh brain fog on the um on the Facebook page. Uh I don't get that anymore. I used to I used to lose my mornings really to that. Um you know I'd be couldn't really do much other than walk up and down stairs until about 11 o'clock in the morning, but but no, I don't really get that now.
SPEAKER_01:And can I ask uh on a on a sort of male perspective, how do you find did you find a lack of sexual uh issues? Oh sorry, let's start try that again. Did you find sexual problems prior to your surgery and has that been improved post-treatment? What's your testosterone levels like in that area? Do you know?
SPEAKER_02:Um that I'm I'm fine. No. Um yeah, there were I mean I mean it's it's it's more to me it's more it's it's more dealing with the fatigue and uh and the brain fog and the fuzziness.
SPEAKER_01:Well, it sounds to me then Spence like you're you're managing it pretty well. And uh, you know, you went through a rough ride, but you know, uh few years on you're you're you're coping pretty well.
SPEAKER_02:Yeah, I'm um I'm well I'm uh assistant manager of an under-19s football team now. Um it's it's trying to force yourself to be busy, I suppose. Um things things you used to be able to take take for granted, you just it just takes a little bit more thinking now.
SPEAKER_01:Yeah, I mean and I think uh at the time when you're diagnosed, you can't really see the light at the end of the tunnel, and it's it's such a sort of big bombshell, especially when you're told five different things in one go. But actually every six months or every year that passes, I tend most people I speak to they're they're they either cope with it very well or they actually start to feel better and better and better. And unless they have a second wave and uh you know and unfortunate to get a second tumour, um living with acromegaly is is manageable.
SPEAKER_02:Absolutely, absolutely. Um sorry, I've lost my train now. Um where sorry, where were we then?
SPEAKER_01:Uh I was just saying, I can't remember either. I was just uh what a brain book doesn't exist.
SPEAKER_02:I got yeah, I know. I don't I've short-term memory, I've I've actually got that noted down, and then I suffer a little bit of short-term memory.
SPEAKER_01:Well, there you go. I'm not going to edit this because I think this perfectly proves proves the point. I think it's a you know, it's a bit of a sign of getting older as well that we lose our train of thought a bit. But you have found that sh short-term memory loss is is a is a factor then.
SPEAKER_02:It does, it does, um, it does, yeah, it does bother me. It frustrates me more than anything. It's you know, it you do find things but when I'm 50, you know, you know, I'm 50 years old. It's um yeah, you know, you can't expect to remember everything, can you? No.
SPEAKER_01:And how did you find social media and uh support groups during this time? Did you make use of them? Did you contact the Peturity Foundation, for example? Uh was that of a benefit talking about?
SPEAKER_02:I'm only really I'm only really on the on the Facebook group, uh the one that the one that Brian set up um a few years back. I've been on that one now for about five or six years. Um and I found it really, really helpful. I've I've found it, I mean, just going through some of the photographs, I mean some of the group photos that the Osaka McGallix of of you know, we've all been fortunate enough to meet each other. They're that you know, there's some really good stuff there. And uh, you know, it's it's the wrong way, but I've made some good friends from it.
SPEAKER_01:Yeah, well, you've gotta you've got to make the most out of adversity, haven't you? And have you found yourself becoming a bit of an advocate, uh, you know, giving advice or supporting someone, you know, when they pop up on the page and saying, I've just been diagnosed and I don't know what to do.
SPEAKER_02:One the one I've noticed, um, yeah, I I mean I try and help people out with a little bit of advice as as people help me out with advice. Um, when I was first diagnosed, I really wasn't a very good patient uh to start with. Um, but I've I find that and all and also giving advice, it it helps you as well. Um it I don't know, I've lost it again.
SPEAKER_01:You were gonna say one uh something that you had noticed, I think, in the Acromegaly groups, maybe.
SPEAKER_02:Oh yeah, um people people um pe people do try and rush getting better. Um you know, and and that's where you you have to try and slow people down a little bit. It's like you know, I I I commented to somebody the other day that it took about two years to get my meds right. Um, and you could you don't, you know, you don't really start feeling better until you get your meds right. I mean that you know you notice little things, you start to shrink in the fit the physical aspect. I mean, I've I've lost a lot of weight in the last four or five years through through through trying because because I was worried about my joints and things. Um so yeah, you know, it it's I I I'd keep yourself busy with something and the rest comes when you know when the time's right to start feeling better. I I I rushed back to work, I went back within a month, and within three months I'd have to quit that job. Right. You know, it's slow down.
SPEAKER_01:Yeah, I agree. Uh and I think uh, you know, we've got to remember the tumour's probably taken seven, eight years to grow. It ain't uh uh all the impact that's had on you is not going to disappear in uh you know a month. Uh and I and I think our body goes under a lot of shock, our hormones are finding their way back to where they once were again, or maybe not, and there may be further complications. Yeah. And and we have to respect ourselves, you know, it's it's it's like we've undergone a big sort of repair job, and you've got to treat the you know the body work and the and the workings of the car with a bit of respect.
SPEAKER_02:Absolutely, absolutely. And there's obviously a lot of I mean you you you know, consultants and and and and whoever, they they you know, they they have to tinker with you because you have to try things to see if it makes you bet makes you feel better, like the somat statin injections and the um and the and the testosterone.
SPEAKER_01:Yeah.
SPEAKER_02:You know, I felt I felt pretty miserable for a couple of years ago until I started having the testosterone injections.
SPEAKER_01:Yeah, I think they they they do help. And you're right, it's about finding and um figuring out what works best for you. And I think that's where regular appointments with your endocrinologist uh and having a good endocrinologist that you see, you know, one that you see all the time, if possible, is so important. So you're not waiting for when you have your yearly appointment for that endocrinologist to read up on all your notes, maybe forget something, maybe you have to tell your whole story again. Do you did you find that do you find that you have your own as it in your own endocrinologist, or do you have go between a different team of people?
SPEAKER_02:Yeah, most most most of my I mean I'm I'm in between two counties, so so most most of my stuff um was done at Stoke. And I I I find that when when I'm dealing with my endocrinologist in Telford, um it's almost like I'm updating him rather than he knows.
SPEAKER_01:Yeah.
SPEAKER_02:Um I've I've I've also watched my file, you know, the hospital files, yeah, they get really thick over the years, then don't they?
SPEAKER_01:Yeah, yeah. So, what's the piece of advice you would give to somebody then who's just been diagnosed? We know what you would say to someone that's just come out of surgery. If you've just been diagnosed with that chromatically, what would you say to somebody?
SPEAKER_02:Uh I I hadn't thought about if I was diagnosed. It it's my my only advice would be um if you don't feel right, get it checked. That that you know, it goes before then uh diagnosis. Diagnosis is don't worry too much, you're in good hands, I suppose. Um but previous to that, I I would, you know, I I ignored a lot of signs because I didn't believe I could get ill.
SPEAKER_01:Yes. Okay, so so for you it's if you don't feel right, or you know, if you're noticing things are wrong, go and go and talk to somebody.
SPEAKER_02:Yeah, yeah, yeah. Most importantly, if other I mean, but you you know, you can have vanity issues and or or things like that, but if somebody else starts noticing differences in you, changes in you, then you've really got to um you've got to listen. You've got to listen, yeah.
SPEAKER_01:Well, Spence, I think on that note, that's a an invaluable piece of advice. Uh, and I'm gonna say thank you very much for sharing your tale. I think it's been incredibly useful. And um, you know, it shows the uh as you say, the impact that it can have if you do kind of ignore the p possible signs, not necessarily of acromegaly, but of something not being right, uh, and you know, uh what that leads to if you don't if you're not proactive in pursuing it. So um I'm but I'm really pleased to hear that you're through it and out the other side. And uh, you know, if you're at 50s coaching uh football kids, then I think that's amazing. So um well done. I'm really, really pleased for you. Uh thank you very much. So if you found Spencer'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 also subscribe to the podcast to receive the latest updates via iTunes and Spotify. So this is me, Dan Jeffrey, saying thank you very much, and we'll see you next time for another Acrotale.