Let's Talk About Brain Tumours
Join us as we talk to those who have been diagnosed with a brain tumour, their friends, parents, partners and children as we talk about all things brain tumours. Find out more about how we are working to change the outcomes for those who are diagnosed with this terrible disease.
Please Note: We recognise that everyone's experience's are completely unique and will be different for everyone. The people who come on the podcast are sharing their own personal experiences, these may differ from yours or your loved one.
Let's Talk About Brain Tumours
Episode 58 - Hidden disabilities
In this episode we meet Gavin Burden and Louise Worthington who have both been diagnosed with brain tumours, Gavin has been living with his brain tumour for 28 years after he was diagnosed at 21. Gavin and Louise have been friends for years so when Louise was diagnosed with a brain tumour in 2018 Gavin reached out to her to offer support.
In the episode, they share the difficulties of living with hidden disabilities, with Gavin losing 75% of his vision due to his brain tumour.
Despite the difficulties they have decided to celebrate Gavin turning 50 by taking on a 25km challenge.
You can find out more about Gavin and Louise here
If you want to get involved in their challenge you can email them here Loungav25kwalk@gmail.com
Music.
Speaker 3:Welcome to Let's Talk about brain tumors. The podcast where we'll be talking to people who've been affected by a brain tumor diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from the brain tumor charity about what we're doing to halve the harm and double survival. Welcome to the podcast. In this episode, we're going to be talking to friends, Gavin and Lou, about both being diagnosed with the brain tumor, the challenges of hidden disabilities, and the unusual way they decided to celebrate Gavin turning 50 so welcome to the podcast.
Andy:Hi guys,
Speaker 3:hello. Perhaps you could start by just telling us a little bit about yourself, and you know how you ended up even being on a podcast talking about a brain tumor.
Unknown:Yeah, who'd have thought I'm Louise Worthington six years ago, when I was 47 I started having some very strange symptoms, just going numb, lose loss of speech for a few seconds, a lot of twitching down one side. Sometimes my whole left arm would feel like it belonged to somebody else. And so I kept going to the doctors, and they kept saying, it's all to do with the menopause. Don't worry about it. Keep taking paracetamol. Probe then, so I did. And I think deep down, I knew something was seriously wrong, but I was I went into massive denial, because I kept thinking, you know, the doctor says it's fine, so I'm fine. And at one stage He even sent me to the stroke specialist at Salisbury district, and he said, Well, you're not, you're definitely not having a stroke, which was true. I wasn't but nobody mentioned a CT scan or an MRI scan at that time. So anyway, the symptoms ramped up, ramped up, ramped up. I now know they were vocal seizures. So I was getting a lot of twitching down one side and a lot of numbness all down one side of the body. And then finally, after having a massive seizure in a pub one night, I was finally given the chance to have an MRI scan, at which stage they said, you can't go home this. You've got a lump in the brain. Those classic words, you know, go on the acute medical unit, and we'll talk to you. And then the next thing I know, I'm in Southampton talking to a lovely consultant who says, You we you've got what we think is a meningioma. But until we know, till we go in, we don't really know, but rather than do a biopsy, we're going to go straight in and take it out, because he's huge and so what? What had happened? So Bob, I called him Bob the unwanted lodger. We're
Andy:not the consultant, is it? I
Unknown:wouldn't have minded that consultant, being my lodge he was quite dishy. Do but no Bob. Bob had got quite big, and he moved the midline of the brain over to the left, so he was like, Bob was on my right side, and he shifted the midline of the brain so hence my left side was going haywire. So, but that had been going on for a year and a half. That's
Andy:how big it was, roughly when it was taken out, you know? Oh,
Unknown:I've got the exact measurements somewhere, but he was, he was the size of a grapefruit. Wow, that's huge. You see the the MRI scan. It's quite amazing. So when they went in, they had to take away quite a lot of the lining of my brain, which is called the dura, and then stick some messy stuff inside, and it turned out to be a grade two atypical meningioma. So I was very lucky in that they got it, got in time. Because had he been left any longer? Had I been kept and I'm not cross with medical people, because no one knows what's going on in your head, but had I kept getting told it was menopause symptoms? I'm I may have just even left it after having a seizure, you know, left it and left it, and I would have been in real trouble had that happen. So I was very lucky that, you know, they we got there in the end. So yeah, and then, obviously, I didn't know what meningioma was. I didn't know anything about brain tumors and different types. So you go on this big, long journey learning about about that. But again, I was very, very lucky. I thought when, when you're told you've got a lump in the brain, we've got to get you straight down to Southampton. They've got your images. They're going to have an MGT meeting MDT multi discipline team. Yeah, they, you know, when they sit and you think, this is it, my number's up. This is it. But at that time, I actually, because I was 48 I thought I'd actually had quite a good innings. And if this is it, this is it. And I was quite calm about that. It was all the people around me that weren't calm. It was very stressful, because you just don't know until they go in and take it. You don't know absolutely what you got. So you just automatically assume the worst. But I did, yeah, and so I just thought, This is it in, you know, and you put your trust in these wonderful people who, luckily for me, I had a surgeon who was about to retire, and I think sometimes that's quite good, in a way, because he's had years and years of experience of scooping out people's tumors, so I knew I was in good hands. So yeah, and there we are, and here we are. And. About to do a 25k walk. So I can't quite believe it, and I'm very grateful. And every day, I know it sounds a cliche, but every day, I'm incredibly grateful. And if I do get a bit peed off about things, I try and remember that.
Speaker 3:You know the fact that you had something the size of a grapefruit taken out, and you're like, you said, it's hard to be grateful when something like that happens because you're like, Why me? But actually, the fact that you had that and you managed to come through that is incredible.
Unknown:Yeah, yeah. Thank you. Thank you. Sarah, yeah,
Andy:had any recurrence at all. Are you still exactly? still clear. I had, I had a CT scan last week, so they said 10
Unknown:Hopefully, days, they were really nice to me afterwards. And you know, you try and read people's faces, you think why are they so nice to me. Have they seen something? I think because I had to have a piece of skull removed, and because I forget about that, I've got a soft spot just here. I and I'm pointing to my right side, I think maybe they just look at because a lovely young team of people, and I don't think maybe they just saw that. I've got bit of skull missing. They were like, Oh, poor thing. They must see it. But I don't know if perhaps they were thinking that. I don't, I just don't know. Anyway, I've got an appointment on the 11th to speak to a neurologist up at the hospital, so I'm sure they'll go through it with me and tell me what's, what's, what's what. I mean, he has got a 50% chance of coming back, Bob, but I've told him he's not coming back. I also look at the 50% chance that he won't come back. And if he does come back, he's going to be tiny. He's going to be the size of a raisin. And then, you know, apparently what happens? Then, if that is the case, I'll get a bit of radio and zap him off.
Andy:Thats exactly what happened to me, almost exactly the same as you a large one on the right hand side meningioma. Oh, okay, mine was seven years ago, taken out, at Southampton as well, funnily enough. Oh, really, Mr. Duffel. He's retired now.
Unknown:Yeah, he was mine.
Andy:Oh really. He did a good job. And he but my two years ago, on my fifth annual sort of scan, I had some regrowth about the size of a grape because in our world it's quite small, about a centimeter, yes. And I had some stereotactic radiosurgery. They call it Gamma Knife two years ago. Yeah. And that's done the job. And they said that works on 90% of people like us who have small regrowth. So everyone's different. But all I was if it does come back, Gamma Knife is a doddle compared to surgery. It really is. So you I wouldn't be too worried. If it does come back and they catch it early, you should be fine.
Speaker 3:It might have taken you a long time to get diagnosed, and that's why your chin was so big. But now they're monitoring it, hopefully it never gets to that point again, and like Andy said, you know it, they'll catch it when it's still small.
Unknown:I just want to say I had to fight for that CT scan, though, because at the moment, with the NHS being as it is, I was, I've got to have one every two years, but I didn't have one last year. The last one was 2021, and it was only because I phoned up and I said, I've been going numb in my fingertips, which is both hands. I don't think there's anything to worry about. It's probably circulation. But because I said that straight on it, which was amazing. Yeah, so if anyone is in the same boat out there waiting for a scan, and it's so important to have those monitoring scans, I just want to say, get onto the doctor quick. And just you sometimes have to be a little bit imaginative with your some of your symptoms. I'm not saying lie about it. I'm just saying just, you know, use whatever sources you can to get that CT scan with the with this stuff, you know, with the liquid going in your arm, it was amazing, because I sat in this CT scanner in a mobile unit in the car park, which was fabulous. You could make a house out of that. It was wonderful. And obviously they put the cannulla in, and it's only you get this sort of, you just get told by the by the office, right, with the injections going in now, and it's sort of remote. It's this little sort of, I don't know, AI, little technology thing comes, starts pumping the the the liquid in. It's incredible. Wow. Absolutely amazing. A human beings. Back in my day. We don't get such luxuries. Now Gav.
Speaker 3:Which brings us nicely on to you, Gavin, because you've got diagnosed a long, long time ago. 28, years
Unknown:and counting, 28 years ago. My name is Gavin bird, so it's mad actually, when I when I think back, I mean, that's, I mean, that's more than half my life. It's just absolutely crazy. Life is just flying by. So, yeah, so 28 years ago, or I would probably say 30 and a half years ago, I started experiencing severe daily migraines. And they just kept going on. I just kept taking medication like you do. Went to the GP many times documented, and they just kept saying, it is just migraines. Just keep taking tablets for it. That's just what I did. Because I just thought, well, that you're an expert. You're you know what your doing. And then I just just carry on, really, but it got to a point where I was, I was taking way too many tablets to get rid of the pain. How old were you at the time I was so I was, I would have been, I was diagnosed at 21 so I would have been, well I would of been 19, around about 19, and it was kind of, it was all a bit bizarre, really. I mean, one on one occasion, I got rushed into hospital from the village where I was living with suspected meningitis because of my symptoms. So I've hit my head against the wall, strangely enough to try and get rid of the pain. That's how bad it was, but you just kind of got used to it. Just, I know people might say, Wow, surely you didn't get used to but you do. You know what it's like? We all have so many pains these days. You just put up with stuff. And that's I think that's what I did until it was almost a breaking point, and that kind of triggered things a little bit. Went into hospital, the guys come in the ambulance. They were all dressed in their white suits because they didn't it's obviously contagious. They didn't want to catch anything. And I thought, Oh my god. So rushed into Salisbury. Someone said to me, they're going to do a possible lumber punch test, which find out what's going on. But they never did. It never happened. So with that, I was actually discharged, went home, just carried on about everyday life. And then I knew stuff wasn't right. I was playing football one morning, and this, this is where it all kicked off. And I just went up to head the ball. And just can't remember if I saw a ball at all, or I saw three of them. It was just, I just thought, Now, this is it? This, something is not right here. And and I said to my boss, Frank at the time, I said, I've got to come off, Frank, and I never came off the football pitch. All the friends that I played within that team at that time, whenever we've got together over the years, we always kind of have a laugh and a joke about it, and they always kind of said, but you never came off. So we knew something wasn't right, and that was it. And back then I drove. So I got in the car. My site was obviously a little bit impaired. I've got in my car. Drove myself. Any cars on the way home? There weren't that many cars on the road back then. And and didn't hurt anybody in the process. But I was due to pick up my mum and dad, funny enough that I think couple of evenings after that, at Gatwick, and I never turned up because I couldn't, because I then managed to go back to GP. They got me up to Salisbury to have a CT scan. Originally had the CT scan, they said we found a lump the size of a pea and I thought, Oh, thank God for that, because I just needed to get rid of the pain. I wasn't sorry. I just didn't care about anything out. I just needed to get rid of the pain, the pressure in the head was unreal. They said, well, we need to get you an MRI scan, but we've got one coming. It's on an MRI on a mobile unit like Lou was talking about. But this is all we had back then. This is literally at Sailsbury we had no MRI scanners. They came two years after diagnosis. So I goes in the MRI scanner and had that done, and then by the time I got home, had a phone call to say, we need to, we need to get you back up. We need to actually get you to Southampton general. We made an appointment for you with a consultant. I said, Right, okay, so I knew something then was not quite right at all. So didn't pick my mum and dad up. She knew something wasn't quite right. And like mums do, and off we went down Southampton. And then that's when they told me, it's about size of a smallish egg I would be operated on. So this one was Thursday. I was be operated on Monday. I had three weeks to save my sight. I remember the eyes were bone dry. Apparently they were just scratching every time they were rolling. And then it's weird, because you think of moments in life, and I can remember going back in the car. I remember punching this door outside in the waiting room because I was so frustrated and so annoyed, and got back in the car. My nan was in there. God rest her soul. Mum was in there. I can't remember who else was in but Howard Jones came on the radio, and it was a song, Lou, you probably remember this, or you guys will probably remember this as well. This was a song to all of my friends and and I thought, what a poignant moment. This this. Do you know how things work out, don't you? I thought, this is this is crazy, but yeah, got home. So operation was booked on Monday. I was booked to go down on the Sunday to have all, every all my tests and everything done, stay overnight, ready for eight o'clock Monday morning. Letter came in a post Friday. Please let us know if you've been taking any of this medication. Clearly, I've been heavily overdosing on Nurofen, obviously being a blood thinner. And I rang them and they said, well, we can't operate on Monday because there's a high chance your hemorrhage during surgery, because your blood would be so thin, and it's a risk that they didn't want to take. I said, Right, okay, so, but we've only got three weeks to save your sight. I thought, right, okay. But again, I was 21 so. I was just, I was taking it in, but probably not taking it in. I was just, I just wanted to get rid of the pain, do whatever you've got to do, but probably was not really conscious that I could go blind quite quickly here. So they said we can only put it back a week. So we did that. Went in the following Sunday for a Monday surgery at eight o'clock. And remember waking up Mr. Lee's so I have also had Mr. Duffield. I am on my third consultant to have retired in my 28 years. Great. I love that. I think that's so cool. Yeah. So Mr. Duffield I'm on Mr. Dernford. Now it was a lovely bloke. Yeah. Can remember waking up and Mr. Lee's come up to me, and I can remember it's weird he had, he had tears in his eyes. And I thought, why is he why? Why you got tears now? He said, I'm so sorry. I said, What you sorry for? He said, I can't remove it. I said, that's, that's fine. I said, What about the pain? He said, Well, we're going to take you in two days later and we're going to fit some shunts to relieve, leave the pressure in the brain. I said that that's fine. I said, if you just get rid of pain. I thought, that's all I can ask for. I can't ask, Oh, I can't ask for anything else. So, yeah. So you know when a couple of days later, had to see try and drain the hydrocephalus and everything and that as soon as they were in, the pain had gone. So the pressure had gone, the build up of just gone. But obviously they've gone in originally to remove the tumor. At one point they were going to go up for the side of the ear, somebody said, but I obviously had a full craniotomy to remove it. And yeah, so, so it's absolutely crazy, but my tumor is which I it's got a couple of different names, but the one that I've my new consultant has put on my letter recently. So it's an optic pathway, pilocytic astrocytoma, bit long winded. So yes, so, so my tumor still sits there. They took out the about the size of an end of a matchstick for biopsy, so it was benign, thank goodness. And yeah, I just just kind of carry on, I guess just, that's what it is
Andy:It's not growing anymore. Since is it? No, it's not growing.
Unknown:Thank goodness I again, like, like, Lou had lots of early scans, and then they kind of went out to a year, then two years, and then in the last six years, it's gone to three years. But I had an appointment down in Southampton with my new consultant a few weeks back now, and he said, to be honest, we could probably go every five years. He said, I could, we could probably do 15 years. He said, But if we get to 15 years, you're going to be waiting in the middle of thinking or worrying. In the middle thinking, I wonder if anything's happening, even though I would get symptoms like a lot of us would do, and I thought, I'm not really comfortable with 15 years, so we're going to go for every five years.
Speaker 3:Yours is really interesting story, because I work with young adults, and for a lot of them, they literally can't imagine living a life with a brain tumor. You know, at 21 it almost seems unimaginable to be diagnosed with a brain tumor and then to have any kind of life. You know, they kind of think that their life is over, even though they can still go on and live. And I think you've proved that it is possible to go on and have a life.
Unknown:Yeah but I also wonder if that's a generation change as well, because back then, 28 years ago, we didn't really have a lot going on. We didn't have social media and stuff like that to communicate with. Didn't so you couldn't you couldn't see all the news, and you couldn't see what was going on, and you couldn't access all these stories about people having tumors and stuff like that, just wasn't available. But, yeah, I know what. Something, something just triggered. Somebody just thought told me just to just crack on, just just just carry on. Even though I'd lost 75% of my vision, I just thought I could just carry on living a normal life, I think, or normal ish life. But quite clearly I couldn't, when it came to the vision side of thing, the tumor. Ironically, most of the time, I kind of forget I've got it. But as I sort of mentioned in the past, that the eyesight is a constant reminder of what's happened, and yeah, I just, I think I've probably always had that positive attitude, like anybody. Many times we feel low and things aren't going your way, but I think I've had that get up and do attitude, even from when I come out of hospital. I even set myself a goal. And even my family tell you that I'm always set myself sort of very adventurous goals in life, and that was to because I wanted to be still, feel normal. I wanted to work, even though everything was going to be a lot, lot different. But I set myself a goal. I had rehabilitation. Should learn to use the white cane in the eventuality that I possibly would lose my sight somewhere down the line. So I was kind of trained for that. That wasn't enjoyable. And I just thought I wanted, I want to get full time employment within a year. Did my rehabilitation at Salisbury College, as it was back then, and I ended up being employed on the 11th months. And I thought, brilliant, then what I wanted to do. But then it was like, what what next? And I thought, that is it with me, what next? What's the next? What was the next thing that would be but I'd achieved what I wanted to do. Very much a can can do attitude.
Speaker 3:You've touched on it there, but you and Lou have both talked about the fact that it's those hidden disabilities, because if I looked at both of you, I wouldn't have I'd have no idea, like if I met you just in a pub or walking down the street or in a shop somewhere, I would have no idea that either of you have had this story of diagnosis going forward. It's, you know, to see you, but I know you've both had, you know, lots of challenges, and there's lots of hidden stuff that people don't see in your site. Is one of those things, isn't it? I think that's
Unknown:the biggest downfall, to be honest. And that might sound a bit bit weird and a bit selfish, but in some respects, I probably wish that there was some visual discrepancy that you could notice and think, oh, that chap's got something wrong with his side. But because there's nothing at all and everything, obviously, is behind the eyes leading up to the brain, nobody can see it, so nobody can actually see it's weird, the amount of the amount of effort I do have to actually put in on a daily basis, and the amount of pressure that that actually just put on me and fatigue is huge. Fatigue is massive for me. I can come home. I think it's because the amount of processing I'm doing, again, nobody gets to see that. I'm constantly what, looking at pavements, scanning pavements, to see for any uneven surfaces and stuff like that. But nobody gets to see that. And then I get caught out when, because I can't of the tunnel vision I've got, I can only see straight across. I can't see anything down on the floor unless I'm directly looking at the floor. So when you've got kids coming around. I've got a cat. I'm surprised I've not killed the cat. I've stood on it many times and kicked it across the floor. I've knocked the kids over because I just don't see them, because they're not in my they're not in my sight line, really. So, yeah, so that that's the hardest bit. It's just because you because you look so normal when you got some scars on your head and stuff like that. It's hard then to kind of describe to people what's actually going on, unless I gave somebody a pair of glasses to say, Here you go. This is my this is what I can actually see. Maybe, like, Oh my God, you are joking. So it's, it's difficult, you know what? I mean, it is very, very, very difficult.
Andy:I think that's the same for a lot of us. Gavin, that we it's the hidden disability, and it's, you know, I'm sure you were just saying the sensory overload and everything means that there's constant battle against fatigue, but you don't look it. People say, Oh, you look fine. They don't realize what's going on inside. And it's, you can't blame people for that, I don't think, but it makes life, can make life, more challenge, not at all. What about yourself? Lou, because you, you look at you, you can't see any you said you had a soft spot. You can't see it. So looking at you, you wouldn't even guess you'd had brain surgery.
Unknown:No, I'm again, lucky, as Gail said, lucky in one way, because I look, you know, completely normal, whatever normal is. But yeah, there's this soft spot. I should have had a titanium plate put in, but I just couldn't cope with I'd had two lots of surgery because I had the craniotomy, then a few weeks later, craniactomy to remove the bone plate because it got infected. I came up like The Elephant Man, all swollen, and Mr. Duffield actually said I was having a quite a nice run until you because it hasn't happened for a long time, so that had to come off again, emergency surgery, you know, six hour, seven hour operation, because all this messy stuff that's replaced the dura. Apparently, the surgeon, when he took the plate off, he didn't know what that was, so he had to phone Mr. Duffell halfway through, and I was like, I wish he hadn't told me that, you know, but anyway, I'm here, but yeah, it's people don't realize it at work. So I work as a dental hygienist, and sometimes I'm put in a surgery where I'm next to the suction pump and the compressor. And these things never, ever would bother me before, because I've been a hygienist for 33 years, it would never but the noise just gets right through. And now I can't cope with with noise at all. I am quite a sociable, gregarious type of person, but I can't do too many social things. I can only do like one, then I have to have like, three or four days, you know, with nothing at weekends. I just long for a weekend when nothing's planned. Apart from my practice walks, and it sounds awful. So lockdown for me was wonderful because it took away all the pressure of weddings and funerals and whatever else. It was just nothing going on. And it was fantastic because I could just, like Gav says, The fatigue just hits you. It's getting through work. You have to sort of pace. I had to pace myself getting through the job, and then make sure I've got nothing straight after work, I can just come home. Even talking sometimes is done incredibly
Andy:well to carry on with the job, because I have to give mine up after a couple of years because it was just the fatigue was too much. So hats off to you for for carrying on.
Unknown:Thank you. Thank you, Andy. I only do three days a week. I couldn't do I couldn't do a 40 hour a week, no way, because it's, it's the talking to people as well, which I love, I love talking, as you can tell, but it's just, it's just the constantly, kind of like, you know, when you're in that sort of business, it's showtime. You know, it's showtime all the time. You gotta put on a front, and it's all about the patient. So sometimes people, because people have seen me now with Gav, so sometimes people will ask me about it, which is really lovely, but yeah, they say, you know, gosh, we've never known you went through all that and because you just can't see it. But yeah, it's, it's there in life. Life takes on how, I don't know if it's, it is much harder than it was before, but it takes on more challenges. I spent the first three years, I think, desperately trying to find the person I was, but you really have to adapt to the person you are now. And that comes with a few challenges, but you can find it. You find yourself again in a slightly different way, and it, it can be really, really positive. And yeah, I've had to have a bit of counseling and a bit of therapy and a bit of work, because I also lost a marriage during that process. So that was that was tough
Speaker 3:Yeah because life, when you have a diagnosis, life is still happening, isn't it? Like a diagnosis is just another thing in the mix of life
Andy:And you almost have to grieve the person you were. That's what I find. It took me two or three years to accept the person you are now and then move on with what you can do, rather than beating yourself up all the time for what you can't do.
Speaker 3:And also adapting to a whole different life and marriage ending and this new version of you post diagnosis, that's a huge kind of transition,
Unknown:yeah, and, you know, having to deal with, you know the realities of life that you think you get married and it's for sickness and health, but a lot of people can't handle, lot of people can't handle that diagnosis of a brain tumour. I'm not saying you know that because you change, your personality changes as well. You can't help, and you can't help that the tumors, these tumors, it's like they take on a little entity of their own, isn't it? It's hard, but they come in and they almost take over your whole personality. And then certain drugs that you have to take, the anti seizure medication, can make you a bit Aggie. See, steroids, it makes you a bit aggressive. They can make you aggressive. And so I had, I was getting really reactive with people as well, like, really, really fireing off, I was angry, and I think that comes with it, that comes with the diagnosis, and it's hard, and that is very hard for other people to understand, because you feel this sense of injustice as well. I mean, I did for a long time this kind of why me? I try not to do that. It's all in any way shape or form, because now I won't let myself be a victim in any way, shape or form, and it's a bit of a story. Now, this is going to sound strange, but it's a story that happened to me, happened to me a while ago, and now, you know, now is now, and it's fine, and you have to try and do you and I know it's cliche, you have to deal with what's going on now and stay in the present. And like Gav said, have new challenges and new new goals and new things to look forward to, rather than keep looking back in Oh, this happened to me, and I was that person. Don't get me wrong. I was that now I try, and especially this year 2024 I just think, no, this is, this is time, time to just put it behind me and really move on.
Speaker 3:And it sounds like Gavin is just the person for if you're going to set challenges, Gavin, just the person. And you two were saying that you knew each other. You've known each other for a long, long time, and you knew Gavin before you got diagnosed. And that's just such a coincidence, because most people never meet somebody, so the fact you already knew somebody with a diagnosis.
Unknown:Unbelievable, and I'll never forget the words Gavin said to me when I was in Southampton, I reached out to Gav, I think it's Facebook Messenger or something, and I said, I've been diagnosed with, you know, brain tumor, and I think at that stage, I didn't know what it was or anything. I was the future was really uncertain. And I said, you're such an inspiration, Gav. How do you do it? And Gav wrote to me, and I will never it makes me feel a bit emotional. Actually, Gav says, Gav didn't think I'd do this. I didn't see this coming. Gav said, Be your own inspiration. You are your own inspiration. And I just thought that was incredible, incredible for what Gav had gone through, to be able to say that and the strength in those words. Yeah. Probably doesn't mean much saying it, but Lord, I didn't think I get emotional. But yeah, it was just such wonderful words, Gav, you know. And and also at the back of my mind, even though I thought this might be the end of my life, I could see Gavin was still going. And it was just, yeah, incredible, incredible. Sorry, I can't really speak.
Speaker 3:No, absolutely, and passed out. What you put tattoo together?
Unknown:Yeah. So the tattoo I've got is always believe you can so some poignant dates on there in life, one of them being eight o'clock in the morning when I had my the operation to remove my tumor. So it's, they're, they're words that are kind of probably inspired me to to just just just Carry on, carry on best you can give it your best shot. And that's what life is about. Unfortunately, it's just give it your best shot. And sort of like Lou said, I can remember when she I can remember, again, talking about social media now, so I couldn't share any of this stuff when I was diagnosed, pick up the old, good old phone and call people. So I can remember, I can remember seeing something. And I just thought, I've got to reach out, because, like, I say that there's, there's not too many of us that know each other when it comes to this, these kind of diagnosis. And also, I've got to get hold of Lou. I've known Lou for quite a few years, so I just wanted to sort of really send some words of, I don't know, probably belief. Do you know what I mean important
Andy:Hope as well is an important word. Just hope to carry on
Unknown:Absolutely, because we can all, plenty of people can say the opposite, can't they? It's like, oh my Do you know the words I hate? I can't stand it. Oh, poor you. I can't stand them words. I detest those words. Excuse me, but I hate them words, and it's not everybody has empathy, do they so? And I totally understand that and appreciate it. But, yeah, going back to Lou, I just, I just thought, I need to reach out. I need her to know that I'm kind of there if you know, I mean, if you want to chat or whatever, or you just ask any questions. I don't I. All I can do is just talk from one tumour survivor to another. Really, I don't have a magic wand, but I can certainly be there if you if you were to have a chat or just send a message or whatever. And I think it's nice having a connection in a weird way, not in a morbid way, but in a weird, nice way, having a connection is really cool, isn't it? And, I mean, that's, that's what's probably, probably brought us closer together, to be honest, and doing the walk and stuff like that, which is, which is phenomenal, to be fair, isn't it? I mean, because nothing to say that the two of us don't necessarily, might not have been here. So we are here. We're certainly making the most of being here and what we've got and the challenges that that sort of face us on a daily basis. So, yeah,
Speaker 3:no, can see you've both mentioned a couple of times the walk. Do you want? Does one of you want to sort of explain a little bit about because you've come together over the last you know, since Lou's diagnosis and you've been on this journey together, you know you're on this journey now. And Gavin, you're going to be 50 this year.
Unknown:I am 50. I
Speaker 3:am 50. You are 50. Wow.
Unknown:I turned 50 last Friday. Oh, no, I don't do a bit. I know, I know. Thank you very much. Yeah, so do you know what? It's weird when I've got sort of when I hit 48 or 49 I thought this, this isn't great. This is not very enjoyable. But I feel like a new man. I feel fantastic at 50. I really do. I kid you not. I feel really cool. I don't know why. There's lots of people that don't
Andy:you know what, Gavin, I mean, I'm a bit ahead of you, quite a long way ahead, but I've loved being in my 50s, have you? Yeah, genuinely, it's been the best, best time of my life. So, yeah, it's a good age.
Unknown:Yeah, I can, I can count for that too. Being in your 50s is the best, best ever. I don't know why. I don't know why. Maybe it's to do with confidence and being on this planet a bit longer. I don't know. It's just brilliant, and you stop sort of caring what other people think so much. You just, yeah, can enjoy your life. Yeah, yeah. It's great. I welcome to the 50s club Gav
Speaker 3:You're doing you're doing a 25k walk to celebrate, aren't you? You're doing
Unknown:Yeah the Thames bridge challenge, or Thames bridge Trek challenge. So, yeah. So we've going back in probably around about, when did I meet you Lou? It was about November time, maybe when you discussed the project. Yeah, yeah. Gavin just said, Hello. Can we make your coffee? Do you like walking? Yeah? Well, great.
Andy:You're on my team.
Unknown:That's it really, that's, that's really where it stemmed from. I wanted to do something to mark my 50th year on the planet and try and use the 50 somehow. So originally I'd looked at doing maybe sort of 50 miles, and I thought, well, that's probably a tall order for a lot of people. It probably would be for me, but as I said earlier on in this podcast, I do love a challenge, and I probably set the bar way too high, but I would have probably done it. It probably would have killed me, but I'd have done it then, sort of thought, well, maybe we just do something a lot less so, 25k 15 and a half mile, but getting 50 people on board to build a brilliant team and to raise a significant amount of money. Hence, the 25,000 for the brain tumor charity we are up and running. We're in almost at the end of March, and things are going absolutely crazy fundraising. We are this morning, I checked we are on 7998 pounds. So two pounds short 8000 in 11 weeks of launching this which is phenomenal, isn't it, Lou. I can't believe the support we've had and the people that have come in to join us as well. What are we at? Gav? 47 people. We've got 47 registered walkers, so our target is 50, but we will happily take more than 50, because that will bring in more funds for the charity. I think the emails and stuff that we've been getting from people that have eithered suffer from a tumour themselves, want to do the walk, so they've signed up. Or there's a couple of people that have got brain tumours that are being monitored, they've signed up. Or people that have unfortunately lost a loved one through a tumour, they've signed up. So it's kind of, it's really gone mental, but it's brilliant. The responses have been fantastic. Some real heartfelt stories, and they Lou Yeah, we've been inundated with emails from people who have been affected by brain tumors. It's been, it's been a real revelation, actually, this whole process, and we set up a an email, an email, and just sort of been pouring in. And Gavs had a few female admirers coming in as well. If you don't mind me saying, Gav. I think people saw us on TV, because we went on South today, which covers a massive area across the south of England. I didn't realize how far it went. And I think people looked at Gavin, thought they were some women wanted to look after.
Speaker 3:even though 50 people was your target, more people can sign up. Anyone can join from anywhere
Unknown:Absolutly Yeah, come on in. And you can join us. And oh, Lou, you can say the email address, because you know that better than me. I will get it wrong
Speaker 3:if you send it to me, then I can put it in the show notes. And yeah, people can just click on the show notes. So So anyone who's listening that wants to join there'll be an email address and contact details for you guys so that they know how to sign up. And if people didn't want to sign up for the walk, but they wanted to donate, do you have, like, a GoFundMe page or anything like that, that people can Yeah,
Unknown:we've, we've got all that. So you can either search for myself or for Lou on social media, and you'll, you'll see everything on there, on our Facebook pages, for instance. So there's, there's links all over there. So yeah,
Speaker 3:such a great thing to do, and it's, you know, it's incredible to think that you've been living with a bit of brain tumor for all these years, and all of the hidden sort of disabilities and sight loss and all of the things that go with it, and still manage to lead a really productive, happy life. Yeah,
Unknown:I think going back to something you said earlier, is that life, life is moving at such a fast pace now that I do struggle with that because of the sight loss, whereas years ago, I I'm all self taught. So I've taught myself to do this. I've sort of taught myself to do that, but it's getting harder and harder, and my family will even tell you that it's just I can't go into busy places anymore because of the amount of processing I have to do. I can come out of a busy place and lose the people that I'm with, just literally, for a blink of an eye, and then I'm anxious, and I have to almost just stand in the corner somewhere, just waiting for them to see me. Even they could. They might only be two yards away. It's as simple as that. So it gets tougher and tougher. But one thing I would like to say, and I'm sure Lou will sort of join me in this as well. But without family and friends, I don't think I'd be here today, and I have to say that my family, my mum, my dad, my sisters, my two children, who constantly take the mickey out of me, and they're also learning about brain tumors, and they learning more and more about dad's sight loss and stuff like that. My wife absolutely phenomenal. They are my support network. But also at the same time, I work because it gives me some something to do. I love working. I work with the most amazing bunch of people at Wiltshire college. I do want to give them a shout out, because we always take the mickey. I take the mickey, but I thrive on that that keeps me going. I love that, but yeah, that all those guys have no idea what they do to keep me going. But I just want to say a big shout out to all of my family and my friends. My friends are massive for me getting over all this, I wasn't very nice early on because I was very resentful that they were doing everything that I couldn't. So I just want to say a massive thank you to my friends and family and my work colleagues. Love you all, and I think
Speaker 3:that's kind of a perfect kind of way to wrap up. If you've got anything else you want to say before we before we
Unknown:I just on that note that Gav said about work, just do. very quick work, even though it can be tough to keep working, it is one of the How can I put this? It's one of the more stable things in life. So life is a chaotic in all up and down, and work can be one of those just stable things that keep you saying so if you can work, it is great for the soul, and especially, like Gav says, if you work with a brilliant bunch of people, I work in a practice with some phenomenal people, patients and staff, and I just love working. So I just want to really reiterate what Gav said, As hard as it can be sometimes. Thank
Speaker 3:you so much, guys, and all the best for the walk. I don't know if I could do 25k so
Unknown:always believe you can.
Andy:I'm going to sign up now to meet you guys, so I'll definitely start. Whether I finish. We'll see.
Unknown:We look forward to both. We look forward to seeing both you don't w.
Speaker 3:You put all the details in the show notes to anyone, so you might be flooded with people with a bit of luck. When is the walk? By the way, when are you doing it?
Unknown:14th of September.
Speaker 3:Thank you very much, guys. Thank
Unknown:you for your time. Really enjoyable. Thank you really lovely. Thank you.
Speaker 3:If you've enjoyed this episode, it would really help us if you could head on over to Apple podcast Spotify, or wherever you get your podcast, and leave us a review, as it really helps podcasts like this to reach more people. Thank you.