Let's Talk About Brain Tumours
Join us as we talk to about all things brain tumours with those who have been diagnosed, their friends, parents, partners and children as well as with researchers, fundraisers and advocates. Find out how The Brain Tumour Charity is working to improve outcomes for those who are diagnosed with this unforgiving disease.
Please Note: We recognise that everyone's experience's are unique. Our guests are sharing their own personal experiences of diagnosis, treatment and care. These may differ from yours or those of your loved one.
Let's Talk About Brain Tumours
Episode 13 - 3am Awake Club
Volunteer Andy Tudor talks about how being diagnosed with a meningioma five years ago has affected his life. Andy has come up with some creative solutions for some of the side effects of his brain tumour, including coping with insomnia. In a bid to keep the night-time "thought demons" away he set up a social media account and he's built up a following of thousands by sharing positive messages when he wakes in the wee small hours. It's become the 3am Awake Club!
You can find Andy on Twitter here @AndyHTudor1
You can find more information about the side effects of a brain tumour here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/
If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org
Welcome to Let's Talk about brain tumours the podcast where we'll be talking to people who've been affected by a brain tumour diagnosis, either their own diagnosis or the diagnosis of loved one. We'll also be sharing news and updates in the brain tumour charity about what we're doing to have the harm and double survival. Hello, and welcome to the podcast. Today I've got with me calm and Andy today, Andy is going to talk to us a bit today about his experience of being diagnosed with a brain tumour. So I'm going to hand over to Andy to tell us a little bit more about his story and about some of the issues, particularly sleep issues that Andy has experienced since his diagnosis. So welcome to the podcast.
Andy:Welcome, everyone. This is the first time I've done one of these by the way, so bear with me. And before I start, I should also say and this isn't to get people hooked that one of the side effects of my treatment, which I'll talk about is that my brain mouth filter isn't what it used to be. So occasionally, I might say something slightly rude or slightly contentious, just because I haven't got time to think about it before it comes out. But just bear with me as a byproduct. So in terms of myself, I was in my early 50s, so five years ago now nearly diagnosed with a large meningioma. So that's the meninges covers the brain between the brain and the skull and in the tumour grows out of that. So it was great to which is termed benign, which is good in a way. But it had been growing for direction between 10 and 20 years. So when it was finally discovered, it was the maximum width was 7.9 centimetres. So that's the size of a size of an apple. How the heck that was grown inside my brain. My daughter always said, she knew I only had half a brain. So she wasn't too surprised. So yeah, so it was a shock, to be honest. So a little bit about I'd had some symptoms leading up which looking back, I can now put the pieces of the jigsaw together and you think you actually, now I know what I know. I'd have been able to diagnose yourself with a probably a brain tumour long time before but I didn't know anything about brain tumours, five years
Sarah:that you were having them what were some of the things.
Andy:So the main ones were increasing headaches, not bad headaches, but just headaches. Now I used to drive 40 miles to work every day. So I'm in quite a busy job, quite a senior job. So I used to get headaches. Not all the time, but fairly regularly, they just increased. And when I went to the doctor about that, we agreed that it was probably early arthritis of the neck, because I played rugby when I was in school. So then I had other things which some are a bit more scary than others I kept when I was driving I'd I can admit this now, clipping things on the left hand side. So I would occasionally drive over the neighbor's lawn, which was, and I occasionally bumped into cars when I was parking. And it was always on the left hand side. And one time I came back, and there was a big scratch down the the left wing. And I was like, that seemed odd. While I was on the left hand side. I was parking at work where I sort of parked in, and I realised I was kind of scraping the car a bit next to me. So I reversed out, went back in again. And I was scraping the car again. I thought, Oh, this isn't gonna prevent the next two weeks, I had to park in a different car park. Anyway, so it was something and then occasionally take the wrong turn. Now there's one time when I got home, and I parked up and I looked up and I was actually outside the wrong house. So that was a bit scary. I was thinking maybe dementia. And then when I was walking around the village with my wife, I'd occasionally just walk to the left veer off occasionally. And then when it really got noticed was when I was walking my I sort of kind of had a dropped foot. So my left it was always the left side, the left foot would sort of slap the ground of it. And I went to see the doctor and they said No, there's nothing wrong there. Because when I was concentrating, it didn't happen. But when I wasn't it was just sort of slapping facade. When I was walking down the corridor at work, someone said to me, why are you limping? And I didn't realise I was limping. So there are a few things like that driving down the one way street the wrong way. And Cardiff wasn't so clever. And meeting a bus coming the other way.
Sarah:Again, the luckiest guy who's driving by the side.
Andy:I'll tell you what, yeah, it was never really twigs. But yes, it was it was it was on the left hand side. Looking back. Now you think well, if you pull those together, there's there that probably is more than just getting old, which I thought it was for something else.
Cameron:It seems to be a lot of things we can relate to with a lot of people you tend to speak to especially who are involved with a branch or a charity that once you know the symptoms and you look back, it makes sense. You can put it all together, but obviously they're not talked about that much so no one actually knows the can't piece the symptoms together. So like they say if you add a coalition and you start to get a runny nose and a bit of a headache I think aren't getting called. So you put something in place. But for a brain tumour, this is something, I suppose we're pushing forward to speak about symptoms. It's a slow process. But, you know, there's a lot of people who come up with the same explanation.
Andy:Now your ID, I think one of the things that charity is looking at at the moment is early adult diagnosis. For me, it was interesting when COVID came along, all of a sudden, there were a whole raft of symptoms, but there were two or three, if you had those three combined, you could have COVID gonna get a test. I was wondering, could you almost have seven for brain tumours? If you had two or the two or three of these symptoms combined? At least go and ask the question of the doctor because the doctors don't really know either. If I mind had been diagnosed earlier, it would have made the treatment less severe. Yeah. But then sort of just sort of take that for then I drove to work one day came back, and then I had absolutely splitting headache. And this is how I knew I had this the symptoms because people said, How did you know you had a brain tumour? And basically, because it was killing me thought of a better phrase. So I came home from work, and I just started uncontrolled vomiting, and really painful headaches or sort of headaches. It just made me wince. I think that's not right.
Sarah:Was it an ongoing headache? Or was it sharp pains, but
Andy:it was it was ongoing, pretty much it was just painful, and paracetamol wouldn't clear it. And that's when I thought, well, I'm in trouble here. Because I again, coping man is we normally have a sense of headache coming on to do something about it. This time, it didn't and the vomiting as well was, that was just horrendous, because he just nothing would stay down. So I went to bed that night, and then woke up in the morning, and I couldn't vomit anymore. The headaches were just as bad, but I couldn't really move my arms. Muscles. Well, certainly my left arm on my left leg again. So I couldn't dress couldn't come a t shirt on, I couldn't even speak. I remember trying to say something and the words didn't come out. And that's when my wife went. We're in trouble here. So she called her doctor he came out straightaway to get him to hospital. So I was in the back of a ambulance straight down there.
Sarah:She thing was happening at that point. Do you think you're having a stroke or something? What
Andy:exactly so I was thinking, well, it's not dementia, because it wouldn't happen that quick. I thought it was a stroke, to be honest, because it had symptoms with the little I knew about a stroke was issues down one side and the face was okay, that wasn't dropping. But my my left hand side wasn't functioning but with the vomiting. Or just I just thought I was on my way out. Apparently, when I went into the ambulance, I did ask, Do I need my passport, because some small part of my brain thought I have, I have to so I went down the hospital they they put me on a steroid straightaway intravenously, that settled everything down within about an hour or so. And then they did a CT scan and, and then they did an MRI. And then within a day or so you get the curtains around the bed. And the very nice doctor saying, I'm afraid we found a large cranial mass. And I'm thinking what, and I had my wife and my two kids, they were about sort of teenagers at the time with me. And you said, you've been dealt a really tough hand of cards. But if you're gonna get a hand of cards, this is the one to be dealt. We think it's going to be a meningioma. And we think it's going to be benign, however, it's very large. So yeah, so I was in hospital every few days. And what was happening was as it grows, it was displacing my brain and started to push down the spinal cord. And that's what was actually causing the symptoms. And the scan of my brain, it closed up all the gaps. It was, it's amazing that I went as long as I did, to be honest without and that's what they said it was close to knocking me off my perch, so power tools to the head 12 inch scar, and so they literally took a chunk of the neurosurgeons had moved it out. And then put the lid back on. Luckily, they didn't put hinge on so I'm hoping they won't. I was diagnosed fairly quickly, and then put on the steroids and the steroids took down the swelling around the tumour, if that makes sense. So that's why my, the real bad symptoms went away almost strength straightaway. So it didn't do anything about this tumour, it just stopped this swelling that had happened around the edges of it, which put me over the edge. And then I had six weeks between diagnosis and operation. And that six weeks on steroids. Wow. That was that's the closest I've known to being on drugs because for for six weeks, I reckon I slept about an hour a day maximum. My head, I was thinking, I felt physically fantastic. I'm like, Oh, can I have these kind of these again, to make you feel physically brilliant, and then have the operation
Sarah:did difference in pressure straightaway. Because if your tumour was that big, did you immediately get a sense of the pressure when it was gone? Because if it been growing slowly over a period of time, I'm assuming you wouldn't necessarily know.
Andy:No, you're right. It's very astute. He was they said 10 to 20 years it could have been growing. So yeah, I didn't. I mean, what I used to get was like a feeling off the set of iflight Semmens raptor at a wet towel around my head and sort of pressed in it But that now because of steroids make you physically feel brilliant. I actually felt the best I'd felt for years. And actually, that made me realised the symptoms of the tumour, how, again how much they'd been building, but I'd kind of found ways to cope,
Cameron:because it was brain tumours, a lot of them seem to span over a long period of time. Yeah. And then only until you get that release, you then realise how bad you were before. Definitely how bad it felt. But because it's going over that length of time, you just develop it to be the norm. That's, that's your normal. That's, that's how it normally feels.
Andy:I think you're right, because I was, you know, I was getting into my 50s. So you naturally think and I'm not, you know, not the fittest. So I wasn't an old athlete enough to realise if things weren't right, if that makes sense. So I just put it down to get an older. But yeah, when when you're on steroids, and it releases the pressure. In a way it was like, I felt fantastic. Always in the back of the mind, you realise you've got some pretty major surgery coming up. And you always thought, if the steroids stopped working, then I'm in big trouble. So that was it was a, it was an interesting time, because a lot of people have said to me, weren't you scared? Because I'd never been in hospital before never had an operation never broken a bone. I'd had weirdly the 10 years I was at the company I was at, I had not had a day off work leading up to this. So I wasn't used to not being well. Yeah. I think partly that was because I was there was a raging war going on in my head. If any sort of cold or flu or other symptoms came in the body went off you go and maybe too busy upstairs. So I don't know whether that's part of why I never got other than, you know, when the tumour got me so, so no, so that was it was interesting time to use it again, in the NHS, they were superb, physically brilliant. operation went well, I came outside 40 staples, which were taken out about a week later. And then about three weeks after my surgery, I saw my new neurosurgeon team again. And that's the last time I saw the NHS, basically, hi, you're okay, mate, it's all out, we've had a second MRI, you'll now have three months, and then annual MRIs, which have all been clear since. But that's it so that I've not had any other support from the NHS when we were talking a little bit earlier about also like the mental health side of things and how you cope with ongoing symptoms, you're on your own, other than charities like the brain tumour charity.
Sarah:And that is a really common thing that comes up. And it's not that simple is just the tumours gone. Because there is always something it's not as simple as you've had your chin, right, you know, you're back to normal.
Andy:And it's coming to terms with the new you as well. And I've seen that a lot in the Facebook groups for the charity that I helped run, and on online on Twitter is and it's not just brain tumours, as people that have had a, say a car accident or, or a stroke, it's, you almost have to let go of your previous self, you have to mourn it, it's gone. And then you're never going to get back to normal what you considered normal before you there's the new normal, and that fat itself can be a real barrier that people don't want to cross because they don't want to admit when nappy changed.
Cameron:I think that's something people need support with after something big, like whether it's an operation or whether it's been an accident that might get help us get better for the dog get the help of this is going to be a new normal. Because my family's said to me, no matter what goes on, we'll we'll manage and we'll deal with it. And that'll be our new normal. You know, I don't have a thirst. So I need a drink regularly, I get reminded that my new normal. I take medication four times a day. That's my new normal. Yeah, you know, it's, it's bought, it takes a long time to get that into your daily routine to become normal. That
Andy:isn't as letting go of what you were as well. And it's true. And it's also the fact that you're not choosing to do that. Yeah, so part of what I find is I feel thirsty all the time. Not all the time a lot. I need to drink an awful lot. And when we go out for a walk, which we try and do every day, I can quite often take a little snack bar with me because sometimes I need a bit of an energy boost. Yeah. And I'm not diabetic, which I thought I might be but it's just my I need to take more liquid in and more energy and more regularly. That is not a choice and I find as well as maybe if I don't eat almost bang on 12 o'clock for lunch. Within half an hour I'll start actually feeling physically not unwell, but I'll start getting a headache I'll start feeling dehydrated. And it took a while for the family to realise that it's not just me being stuck in the mud. Oh, yours is 12 Who needs to eat at 12 so I but I know that now. So if you're going out, you know often go up to London and we're going out now that COVID restrictions come into it. Then I'll make sure I'll be the one that is here. But what are we going to do food, look from the wife goes, come on, we're just going to go out for the day. But so I'll make sure I've got, if we're sort of going out for a long lunch, say, a long, long day, I'll make sure I've got my lunch so that random at 12 o'clock, I can eat and look after yourself. Because if we took a bit longer to arrive, or we were late, or the car was loaded the data, and it's one o'clock, I'm starting to struggle, and once I start to struggle, it affects me for the rest of the day. So it's not a choice, it's just how it is
Sarah:different. We like that before the tumour
Andy:it is so common one, I mean, I put the liquid thing down to this may be wrong, and I'm amateur. But again, I'm not had any help. Understand this is the fact that my brain was compressed, with an apple size thing, then it's expanded out, it's not quite expanded out very well. So I've got more gaps around the brain, which are filled by CSS, cerebral spinal fluid, I think it is. So the way I see it, is I need more of that maybe only 10%, maybe 20% More than other people, but that probably takes quite a lot of liquid generate. So that's why if I if I, if I get dehydrated, it really affects me almost straightaway. And it's not just an age thing. So that's why I find I've nearly always obviously got a drink with me. Because if I start getting dehydrated, it's it's you fall off the cliff quite quickly.
Cameron:I'll find that and relate like, especially if it's probably on a different level, but with the food. Like if add or eat within certain times. Mahmoud crashes, sometimes quite moody and a bit cranky, cranky, that's the right word. People notice that. And then as soon as the my blood sugar comes back up, and people can see the different
Andy:exam, I have exactly the same camp. And I've because I used to think even post op, I've I got diabetes, because that's my understanding of what diabetes is. But I've had enough blood tests, where they measure that kind of thing that it isn't, and it is down to like you say it's that. And I think because the bodies, even though you've we're kind of we've been treated, the body is still fighting a raging war inside because somebody knows something's gone on that shouldn't have gone on. And I think so a lot of the resources, the energy around the body is is sort of directed to where the battle is. So therefore things like liquid and energy gets sucked away there on. So I think you're right, it's that people don't I was never told to expect that I was never told this is what's going to happen. You have to you can't have to find these things out.
Sarah:And this is this is the thing, isn't it? This and this is the beauty of this podcast is that the more people talk about these kinds of various different sort of things, people can kind of go or maybe that's it, because they're all things that if you went to see a doctor or a neurologist, they wouldn't tell you about these things, because chances are they don't even know it themselves, because they only deal with the actual clinical tumour they don't deal with and have these conversations, ongoing conversations of how people's lives have been affected. And all of these things that go on afterwards.
Andy:Absolutely. No one from the neurosurgeon team is spoken to me since whatever, say three weeks after the OP. So they wouldn't. It was a big driver mind to get back to work, doing the same job as I was before. And it took me about four and a half months to get back to work part time, and about another four months to get up to full time. So about eight or nine months after the app. And then that might be useful to know about eight or nine months after my which was a large brain surgery. I was back at work full time during the job I did before. The challenge then was the fatigue and sleeping
Sarah:habits. That's been a big thing for you, hasn't it? It has been Yeah, so
Andy:what what I find is that in terms of sleeping, and again, I don't always because the specifics of the operation I had, I only sleep in two hour chunks. So I can get to sleep quite quick. But after two hours, I nearly always wake up. And I'm quite alert. So I've looked into it and there are sort of chemical processes around move around the brain have gotten the name that neuro processes or whatever it is that tell your brain to sleep when you're asleep. I think that's been interrupted. And that seems quite common from what I've seen online and talk to others in people that have had a brain trauma, that those those patterns that that that process where your brain is telling you to say sleep is broken. So like a lot of people I just I can only sleep for two hours, then I'm wide awake. I'll occupy myself for about half an hour, then I can get back to sleep again. And I usually do that three times a night so if I get my six hours over the whole period and I I'm fine I could survive on that. But it took a while to realise what I shouldn't do is if after two hours I may lie there go and you've got to go back to sleep. Don't fight it. That's what most people do. Isn't that's what most people didn't that's what I Usually because no need to explain this lightly, you got to get back synchronously. And then of course, it never happened. And I know you should use your mobile phone because of the blue screens and all those things. However, I need to have my brain occupied because that's, that's the dead of the night, shall we say, that's when the demons come in. And I'm quite an optimistic guy. But when you're lying there at nights, and it's quiet, you're tuned into every tiny little thing that's going on in your body and you convinced yourself, you're going to pass away basically, or something's going to happen, or what is what that little brain professional bursts? Or what if, what if, what if, and before you know it, you're in a world of anxiety. And that doesn't help sleep either. So I have to occupy my brain. So what works for me is on the mobile phone, and that's where things like Facebook and Twitter and just things come in handy. I can spend Portland air on the mobile phone, just not thinking about my brain. And that then allows myself to go right, okay, now it's time for sleep now, get into the little routine of going back to sleep. And I'll have murdered two hours. And it's taken me quite a few years actually to get into that routine. But now I'm in that routine, I can survive. I used to dread going to sleep because I knew I'd be awesome. I thought I was an insomniac. But I wasn't I don't think because I couldn't get to sleep, she couldn't stay asleep. But what that then meant was that I don't know if that adds to the fatigue, or the fatigue adds the sleep. I think the two are separate. But in terms of the sleep, that seems to be quite a common theme for people that have had traumas. So what I found is okay, you can receive for two hours when you wake up, don't fight it with your phone, do some stuff. Go back to sleep again. So I find if I'm often going to sleep at about a half 1011 ish. Come three o'clock, I'm wide awake. And there's no point fighting it fighting is the worst thing. So what can I do? So I started doing this thing on Twitter call the 3am Awake club, because it's always around about three o'clock in the morning, I was awake each each night, each night, probably about four or five nights a week, I'll just post up something called you know, the 3am club is open, don't make a mess, sleep issues outside that just a little bit of fun, you know, wide awake, and then it's I'll put something quirky on just so that if other people are awake and want some company, they can tune into it and just get a bit of, hopefully a bit of distraction from them not being able to sleep. I've been doing this now for a few months, and it's becoming more and more popular as more and more people know about it. It's subjects like the things like what's the dullest picture on your phone? Is it one of a street map? Because I was wanting to remember what streets I mean, was it another one which is quite popular was in is in the summer? What's your favourite ice cream? The one last night was Do you like Halloween or not? And it's, it's things like that, which is just a bit quirky, and a bit different. But people can either engage or they can watch other people engaging. And it seems to be you know, I wouldn't say it's like inundated with 1000s of people. But there's, there's there's a call a few 100 people right now that interact with it on most nights and as I had some feedback from people going, thanks for that. It's it's, it's good to know, I'm not on my own. It's okay to be awake. Because one of the comments I had
Sarah:that time in the morning, isn't it where that's can be a really lonely time. If you are awake, it can be a really, really difficult thing. Like you said that Dima start going off in your head and there's no real distractions are there you know, there's nothing you can do. Everybody in your house is asleep.
Andy:It is it's it's there. So that's what I found it's part for me is to keep the demons away. But then you realise you're hopefully helping others keep their demons away. And then you know, people are awake for different reasons. Some are because they've had a brain trauma, or brain injury. Others are dealing themselves I've no idea what how you define as an insomniac for people that just can't sleep.
Sarah:And happy to share your Twitter name. Oh, yeah, definitely. Yeah. If anyone is listening, they want to join you at three o'clock in the morning.
Andy:Yeah, no, it's at AMD YHT. You do our one. So it's Andy Ah, 221. The more the merrier to be honest. And it is just, it's, it's a cost. This was bang on three o'clock. I think this morning, it was about half three because I slept in a bit, which for me is yay, half an hour extra. But it'll be on there and it'll just be a bit of a bit of fun. You know, what's your favourite pizza topping? Who does then you know, there was a picture of my ladder been to Liverpool and taking a photo of the Cavern Club says, Oh, can you? Do you know where this is? So stuff like that. So anyway, that it seems to be quite popular. It's also a good way of fleshing out the wrong way of giving people an opportunity to say, Hey, Andy, I've had a brain tumour or I've had a trauma that are down I've had a few people that I've then been able to serve help. Sounds like I'm righteous I'm not it's just me trying to feel the time being but help like saying, well if you want some more support, there's a great charity over here. Brain human Charities has got superb online support. It's got support team. I tell you about find that you you name it, you can do it. And it's Got great Facebook groups as well. So I've been able to point a few people towards that, which has been quite useful.
Sarah:That's really important, isn't it? Because after all, you know, that's the great thing about social media, they're 24 hours a day around the clock, bank holidays, whatever. And the support of the community to support each other and lift you all up at those times, is invaluable.
Andy:Definitely. Yeah, yeah. Well, I've spent a lot of time on the Facebook groups, and they're they are brilliant for finding out things and for comforting yourself, that you're not alone. And that with this set of symptoms, and this treatment, you can live a normal lifestyle. That's when I first found out that actually, I could live a normal lifestyle for lifespan, I should say. And on all
Cameron:social media groups, even if it's not like, say, we'll come on to the charity group, someone from the charity may not be available that there's always someone else in within that group. Yes. Who's got an input? Who's got something similar along them lines? Or, you know, I can give you advice or take advice from yourself? I think there's always someone there, because especially with charity pages are hashed hashtags. Always someone following who's involved.
Andy:Now you're definitely right in the Facebook groups. I mean, the main support groups got I think it's about 12, or 13,000 people in it. Yeah. So there's always someone available and always someone online sale, and I still use them as well. So if you ever have an issue or query or question or again, if you just want to put something up, you can do. But what I found is Twitter has maybe a wide reach. It's a bit less personal. So you know that that's why if someone's really has an issue or to challenge you, I tend to point them towards the charity pages. But if it's just an acknowledgement that there are other people out there at three 3am in the morning, and other times you don't you're not alone, people, you know, you, there's someone else that can at least understand, that seems to be quite a valuable thing to do on Twitter, shall we say? And I think that's part of the reason why I've got quite a few followers. Now. It's because people see that and they go, Oh, that's interesting. I might keep contacting me. In fact, I've had one or two people I've had myself know referred to as the brain tumour guy. But I'm, I'm happy with that, because it means that if someone's got an issue, or you know, you get people say, Oh, my nan or my sister or my that other day, you get tattered. And it's it's just a comfort to them, to be honest.
Sarah:D and you mentioned earlier on about fatigue. And you said they're two separate things. What do you mean by that? Hank, do you think they do or don't impact each other?
Andy:I think they they will impact each other but they the sleeplessness doesn't cause the fatigue and the fatigue doesn't cause a sleeplessness, that's where I look at it. So that's the thing that people don't tell you about the which I think we need to shout loud and Baronies, mental fatigue is a huge issue, that's my biggest issue. Because physically, I'm back to normal, whatever, you know, my faculties are all here. Sadly, my sense of humour survived. That all keeps telling me all back up. So the fatigue is the big one where the Well, the way I sort of try and explain it to people is because every so you look fine, you look nice, you've you're better. No, I'm not. I might look around the outside on the inside. And this the fatigue. So if you think of every wake up in the morning, say with a tank of petrol, then that's their energy for the day, mental energy for the day. People like myself, and I'm sure Kansas, say people that have had a brain trauma or a brain tumour, your tank is probably about half empty, and it's got a leak, you're continually fighting inside as well. So what I find is, I can't do what I used to do before my operation certainly mentally because I get very tired very easily. And for me, when I get fatigued mentally, it's it's a horrible place to be it's like referred to like as having a hangover. You haven't had the fun. You haven't had the fun of getting the hangover. So you're tired, you're dehydrated, you're you're cranky, everything about it, you've got a headache, but you can't do anything so that the only thing that stops my fatigue is sleep, funnily enough. So once I'm fatigued, so I now know what fatigues my brain. So what I'll try and do and this has taken me a few years is manage things that cause my brain to be overtaxed and overworked.
Sarah:out because you we've talked about this before we started recording, and you had quite an ingenious way of figuring that out. Do you want to share a little bit?
Andy:It's I'm a techy guy did physics at uni. So I'm a bit of a nerd, I'm afraid but I'm a big spreadsheet fan. So I've got a big spreadsheet Excel spreadsheet, I had it going before I stopped working. So what I would do is every day I would identify the activities I would find mentally tiring. So when I was working, for example, when I go back to work, it was like I was chairing a meeting. or having a long phone conversation, seeing a customer. During a presentation, I used to do training as well, things that really you have to tune your brain in completely would train me. So if I had two meetings are cheering on the same day, I'd feel quite rough that night. And then it would also build up. So the weekend, I spent most of the weekend literally just trying to sleep. Like imagine having the worst hangover you could have on the weekend. So, so what I then realised is and it because I colour coded it. So the real challenge things are red, like chairing a meeting, or if it's like reviewing a document, then it's orange. If it was just like doing emails and stuff, it was yellow. And if it was doing nothing at all, it was green. So colour code the day green, orange, red. So what I'd find is if, if I had a group of reds, so I'd had quite a few really mentally challenging activities close together, I would invariably get fatigued. So my fatigue would also be orange already at the end of the week. And by visually looking at it, you could see the pattern. And then I started to spread out what made me fatigued. And then you can see the actual times I was fatigued, decreasing. And because you can actually visually see it, it just Whoa, I didn't realise it became obvious to me that it was the depths and the frequency of what was making me fatigued. That was causing my overall levels of fatigue to
Sarah:think that's a really important thing, isn't it because people try to go back to their air quotes normal life. But actually, like you said, you went back to your normal activities, and you're able to identify, this makes me really tired that I can do so it's about how you then balance your day and rearrange your working day, you would you could organise your day to make it more manageable. And it's that sort of information that's really helpful. If you ever want to go to your line manager and say, Look, I'm struggling at work, here are the things that drain my energy. So don't put three meetings in a row for me to put one meeting in there. And I'll spread the mites on Monday, Wednesday and Friday, for example. Yeah,
Andy:yeah. And what you find is, when you're at work, people get used to that. So they would soon get used to. If I was chairing a meeting on a Wednesday, I would try not to chair another one till Friday. So if they said, Oh, can you do a meeting on Thursday? No, I can't. And people soon get used to that you think, Oh, they're gonna think any worse than me. Because I can't be 100% five days a week, no people understand, especially if explain why you're doing it. And you know, if you work with other geeks, I'll show you to show them the spreadsheet and go off and get ya can see that. And then when I retired, I retired early, thankfully, two years ago, December 2019. And I've kept the spreadsheet going. And it's like, wow, you look at it before and it's it's speckled with reds and oranges. And virtually every weekend, I was feeling fatigued. Now, it's much more green with the odd orange, very few reds. Because there's nothing I do now that that mentally challenging, then the amount of time I'm fatigue is now maybe once a month, if that. And it's like Whoa, it's clear as day like that by visually looking at it and colour coding it, you can see the difference. Stark is there day and night. So even to this day. Now I know, say if I'm going up to London, like we went up to London Weekend before last to do normal stuff, like go and watch American football. So I knew then because that was going to be intensive. So that was a couple of red activities, which was having a meal with family and friends on the Saturday night, where it's like information overload because my brain can't take as much information as quickly as
Sarah:sensory as well. I've been sensory. So if I'm
Andy:ever going out for a meal with friends or family, I try and sit at the end of the table, preferably with a wall behind me. So that all the information is coming in one direction. And then I can tune it out if I'm sat in the middle of the table of doing left and right, that overload so people get used to that. So when we go into restaurants, they'll usually say to me, where do you want to sit and I'll go, I'll sit in the corner, please. And it's not you know, no puts baby in the corner. It's just I find that makes it easier for me to cope. So I knew there was a couple of things like that and being in a large crowd as well can be a was can be too intense. So I knew on Monday, absolutely nothing. And also the fact that I did nothing all day other than maybe read a newspaper do a couple of to do queues and watch some rubbish film. Kong Skull Island, I think it was actually quite enjoyed it. That was allowing my brain just a little bit of breathing space. So I knew I had to do that if I'd tried to carry on as normal and mundane go shopping or do stuff. I'd have felt really fatigued. The other thing I'd have interest while we're on the subject of sensory overload is I always have to have my sunglasses on baseball cap when I'm out walking, because if the sun comes out, it's just for me it's too much. So even in England so when you see me out walking, you'll always see me with sunglasses and a baseball cap. It's not because I'm trying to look like P Diddy or something. It's genuinely because too much information coming in. We It can also be noise and, and some sunlight, the brain just goes out.
Sarah:Again, it's something that no one would tell you about. or anything like that you
Andy:are something I'd love to do would be to actually go into hospitals when people have been diagnosed with a brain tumour. And all the medics have gone through and given them lots of big words they can't understand, and you can't record anyway, because you just had a brain tumour and sit and down and go, right. Just so you know, here's some mechanisms to cope with what you're likely to have to deal with. Here they are upfront, everyone's different. I know. And everyone's unique. But these may help you cope, afterwards. A few little things that I've learned over the four or five years, but I'd love to be able to short circuit it. And that's sometimes what I do online. If someone says that either they'll say, Well, try this, try that make sure you don't do this. And it may help. Yeah, the other thing as well, which people didn't tell me about was tinnitus. Although if you get tinnitus can, yeah. But I'd mind came on remembering now is that the October so I was operated on in February. And in October of that year, literally one night to tinnitus came on and nowhere and it's the life out of me, I was gonna sweat it, because all of a sudden, I wasn't used to it. And I'm thinking, I can't switch this off. For a few nights, it was post driving me to distraction, because no one had told me about that. And I wasn't aware of it and was like, Oh my God. But now it's at a level for me, at a level where if there's background noise, I can't hear it. Yes. But now I can't hear. But when I'm fatigued, it feels louder. Yeah, whether it is or not, I don't know, it just feels louder. So again, if I'm getting fatigued, I'll sometimes put the headphones on, because that's another coping mechanism. For me, if I'm feeling like they're gonna get fatigued, and an evening I've got it's worth it a really good pair of noise cancelling headphones. So I'll put them on, listen to some music, and I'm in my zone, then. So my family know, if I'm sat at the end of the server with my headphones on, you know, and he's probably getting a bit fatigued. Now let's leave him alone. And that, to me, helps lock everything else out. Listen to some some music, which probably no one else would like. But that's my coping mechanism for tinnitus.
Sarah:That's a really good thing that you just said as well about being assigned to your family that you're struggling, because fatigue is one of those things that you can't see two people. So they'll keep coming to things. And having that clear, this is my time I need to zone out. Now.
Cameron:I think a lot of people don't understand fatigue, especially mental fatigue, because you can't see you haven't run a marathon, you're not like, Oh, he's tired, because he's just running a marathon or whatever, you're just having a general day, and then you get really tired, you've only walked to the shop, or you've only been sat in the house. But no one quite understands. And sometimes you do have to explain and obviously, family members can know, from my experience from our side, not everyone, maybe but my family are quite, you know, look out for me and supportive, you know, support me through fatigue and things like that. But I think that's a big thing that people need to be aware of. Not everyone understands fatigue, and when you can put that in place of friends and family nor you need that time alone, because you are fatigue. And I think that's a good sign. I put your headphones on. You got one place and it will know, right? Well give him 10 minutes or an hour or however long he needs.
Andy:Yeah, no, you're absolutely right. It's a coping mechanism that works. Yeah,
Sarah:even though you can give yourself that permission, isn't it? Because I think the thing is, people try to push past it don't think I need to keep going I don't disappoint people or now they can't do things that we would normally do because of me. So people try to push themselves too hard.
Andy:And the thing as well is to recognise and for your family to recognise it's not a choice. I'm not choosing to be irritable, or I'm not choosing to be fatigued, it kind of happens. So don't have a go at me because I'm a bit cranky or in a bad mood or because there's a really good TV programme, but I just want to sit here with my headphones on Thank you very much. Yeah, hello. I'm not choosing that that. All I know is that fatigue is a one way ticket to feeling absolutely rubbish. Yeah, you can't kind of for me, anyway, it's a one way street. So once I feel myself getting that way, if I do these things, which is the headphones on take it easy to do that, then I can I can arrest it, which means I don't have a reasonable quality of an evening and then go to bed sleep off you go again. If I don't do these things, I'll just go down and down and down. And then it's you're in a world of pain. And sometimes it's one night sleep isn't enough and then you're in a whole heap of pain that if you wake up in the morning and you've got a headache, forget it. So again, it's just useful to know that because it's also for your friends and family to know so I don't go out that often. By the way because I'm not that cultured. But when we do go out with friends, and certainly family that I grew up with more often they now know, if Andy wants to sit in the corner, it's not because he's, he's had a bad day or he's bored, or he doesn't want to sit next to me, it's because he needs to sit in the corner, because otherwise, it will feel rough later on. And it seems like that. So I know, dare I say, after I've come off this, this this podcast, I'll be like, well mentally put my feet up. And I might have my headphones on later. And I might even feel fatigue, but it'll be worth it because of this. But I know, I've got nothing else planned for this evening, other than sitting down and watching doing nothing, actually. And it's not a bad thing happening, then I'll need to do that. Otherwise, I'll be in a world of pain later on. Tonight. So it's it's about giving yourself permission to do those things. And also, the family knowing is not a choice. You're looking out for yourself. It is yeah, because no one else will because they can't see what's the cost of the reading tomorrow is going on inside.
Sarah:Exactly. We'll be wrapping up shortly. Is there anything you wanted to say Andy, before we draw this to a close?
Andy:I think for me, I went through a life changing Episode Five years ago, I could have really done with more mental health support and just support in general. I'm here to help others going through the same process. So if anyone is you know diagnosed, know someone who's been diagnosed as friends or family has been diagnosed or is trying to cope with the after effects of a brain tumour, please get in contact either through Twitter or through the charity. I'm more than happy to give my two penneth to say, I know everyone's different. I know you're all unique. But this has worked for me and I so wish I'd known this five years ago because it would have made the last five years much more pleasant. The other thing as well again, just to finish off is there is life after brain tumour I love being daft. Occasionally I always have and I could still do daft things which is brilliant, even when having had a brain tumour. So I've been to music festivals and adore to Southwest for in London, EDM speakers the size of a house. I think I should not be here. But wow, I love it. And it's things like that. Going walking through London with a cheese head on to go to an American football match, you can still do daft things, even when you've had a brain tumour. So it's not all doom and gloom. And you know, we've talked a lot about the symptoms and the after effects. But if you manage it, right, you can still have a you can still have fun and you can still be daft occasionally. And that's a
Sarah:really, really important and really good points when actually, you can still live well with a brain tumour diagnosis.
Cameron:Yeah, yeah, that's well said, I couldn't have said it better myself. Because that's it. You can't let it define you. You've got to live your life anyway, you might have changed the path you're on. You know, the destination is still the same. It just might be a different direction. Definitely. And I just want to say thanks, Andy, for being brave enough to come on here. Putting yourself out in person, all that information on everyone. I think you're an amazing person.
Andy:Oh, yeah. It's just a good job. People can't see me.
Sarah:And I will include your Twitter handle in the show notes. So people will be able to click on it and bother you on Twitter.
Andy:Perfect. That's brilliant. Thanks very much. Thanks for the opportunity to talk as you can imagine, like do like to speak quite a lot. It's been great,
Sarah:really. Well thank you very much. We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org And finally, before you go if you enjoyed this podcast, please can leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness