In this episode, we talk to Sunil Reddy about his diagnosis and the impact this has had on his life. Sunil talks about how his memory has been affected due to his treatment and what this has been like for him both coming to terms with the long term effects of having a brain tumour but also how he is finding ways to cope with these changes.
Memory loss is a common side effect of brain tumours with Cam and Chandos also sharing how, like Sunil they have also suffered with memory problems as a result of their tumours.
You can find out more about memory and brain tumours on our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/memory-difficulties-and-brain-tumours/
We also have advice on coping wth memory issues on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/memory-difficulties-and-brain-tumours/coping-memory-difficulties/
You can also track how your brain tumour has affected your memory using our BRIAN app https://www.thebraintumourcharity.org/living-with-a-brain-tumour/brian/snap-challenge-memory/
If you would like to talk to our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org
In this episode, we talk to Sunil Reddy about his diagnosis and the impact this has had on his life. Sunil talks about how his memory has been affected due to his treatment and what this has been like for him both coming to terms with the long term effects of having a brain tumour but also how he is finding ways to cope with these changes.
Memory loss is a common side effect of brain tumours with Cam and Chandos also sharing how, like Sunil they have also suffered with memory problems as a result of their tumours.
You can find out more about memory and brain tumours on our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/memory-difficulties-and-brain-tumours/
We also have advice on coping wth memory issues on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/memory-difficulties-and-brain-tumours/coping-memory-difficulties/
You can also track how your brain tumour has affected your memory using our BRIAN app https://www.thebraintumourcharity.org/living-with-a-brain-tumour/brian/snap-challenge-memory/
If you would like to talk to 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 have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival. Then welcome to the podcast. I'm Sarah and today I'm joined as always by camera and handoffs. In today's episode, we're going to be talking to Senator about the impact that his brain tumours had on his memory. We know that brain tumours have a massive impact on memory, and he's gonna be sharing his his story and his experiences of how his diagnosis has impacted his life. Welcome to the podcast. And now, if you'd like to tell us a little bit about your story.
Sunil:Hi, guys. I'm Sunil. So I got diagnosed in 2017, in May, and it was an accidental binding. So I had this thing called the hygroma in my neck, and they ended up doing an MRI for it, but them or actually also scan the bottom half of my brain and they realise that there was a tumour in my left temporal lobe. So before I actually was diagnosed, I did go to the doctors about different issues, but there was issues with my thyroid as well, which they shouldn't they were caused by that. But I still don't know if different issues, I had slight memory issues back then as well. And I would get tired very quickly. And all these kind of things. I don't know if that was my thyroid or if it was the brain tumour, but it was kind of a shock, kind of realising it was a brain tumour when I was starving him for something completely different and assumed it was completely different. So they actually put me on Wait and watch until May 2018, when I had my surgery, because they told me it was growing. So that was my first. My second surgery was June 2020. So during my first surgery, my memory issues got a lot a lot worse. So during my first surgery, there was like major blood loss and stuff, I only found that out because I asked for my records because my family got really, really bad. I would have issues where I would like get into strangers, cars by accident, because I thought I would just look at a silver car and assume it was like my dad's car or something. And I would get in and stuff like that. And I would have issues where I would just get lost in areas that I've walked through like years and years, I would, I would realise I would start relying on my phone. So it was just, it was just getting to a point where I just couldn't remember basic things either. Things I would do today, not things I would do yesterday, I would think I did today. So some taking medication got a lot harder. I started having seizures, I started seeing a neuropsychologist who actually did testing and realised actually, I did have issues with my memory. Because initially, after my surgery, you have that first like neurological test. And I got told that I wasn't trying hard enough on it because I didn't do as well as I shouldn't be doing. And that was the end of that I went home and I just struggled with it. And I didn't really want to talk about it because it just felt like it felt like I was making things up when I didn't when I wasn't it felt like I don't know, it felt like I should I should be doing better. Because everyone else it because like the expert says I shouldn't be doing better. I thought I shouldn't have been and it's just me in general. Maybe I'm not trying hard enough. Or maybe I wasn't doing things
Sarah:different to when you had your first surgery. I'm imagining after you have surgery, there's a period of time where you're obviously your brain is recovering from surgery. So was there a point where you just thought this is just normal post surgery and then you kind of realise actually, this is more than just post surgery recovery?
Sunil:Because I've never actually been through a brain surgery, I assumed I would just get out of it with like no issues. I just assumed I would wake up and everything would just be normal for some reason, I think. I think that's how I felt anyway, actually don't remember how I felt. But that's what how I felt after my neck surgery. Anyway, I just assumed everything was good is gonna hurt a little bit. I think I had the thing that everyone has the fearing that you might die during surgery. Because even though it's quite rare for some reason for that to happen during brain surgery, most people usually find you always have that you always have that thing in the back of your mind thinking what if I don't wake up? I had thought think I had. I don't actually know how I felt But thinking back and how I might have felt at that time knowing my personality. That's probably how I would have helped. I do remember that I did actively have to seek out like I could go to my GP and ask for Neuro psychologists to He did like more in depth testing on like, My short term memory, active memory and like long term memory. And like the different things like actual, like cognitive ability and all that kind of stuff when she realised it was it was issues with my active memory, which was the main problem which caused issues going into, like, so if I learned something, or if I needed to remember something, because it was it would go into my short term memory, and I'm guessing then it goes into long term memory, but because I couldn't even get it into my short term, I would kind of just would just kind of fade away. And I would never remember I have issues where I would do some, like, if I took if I took my medications yesterday, and I woke up this morning, and I set an alarm. And I would I would just press Okay, I'm gonna take my medication now I'm just going to confirm it. And then I'll go downstairs and I would completely forget, or I will remember yesterday's memory of me taking it, I would just assume I have taken that medication. And that's kind of scary. I
Sarah:was gonna say, is that quite a scary? life in general? Because when you can't remember whether you've done something or not, or what you've agreed to do, or where you've agreed to be, or just basic kinds of thing, does it feel really confusing? Does the world feel just really confusing?
Sunil:I don't know. For me, it feels, I don't know, it's more like what people might think if they realise this is going on. I don't know why it shouldn't be like that at all. It shouldn't be about what other people might think that's why I try and avoid social situations as much as possible, because it just doesn't feel nice when you're having a conversation or you're trying to it just feels like people are gonna judge you negatively, because you don't really remember things about them as well. Or you might say you're going to do something for them or do something with them. And then you completely forget. And it might be something really important. And you can easily lose a lot of friends like that. So I kind of just try not to make friends. Because would you
Sarah:say you're less those people now than went them before all of this happened? Do you find yourself avoiding those situations,
Sunil:I was pretty antisocial before. I guess before I was just antisocial. In general, I just like kept to myself. But now it's more of like this issue of, I'm not going to be able to like be the friend that everyone wants me to be or like be that person that people want me to be.
Cameron:Sorry, I'll just jump in there with totally understand. Because when that came out after being on everything it was when a lot of people went off to college or university and they're all going a different direction. So there was a lot of people who will close friends who were scattered across the country, so there was no one really close to kind of put a lien on any of you could put your trust in so I make new friends from scratch. And it is a terrifying thing that when you memory so terrible remembering names. That was a big thing for me even just talk with someone and seeing them the next day. Yeah, to remember the name. Remember what the conversation was about yesterday, simple, simple little things you do take for granted on a daily basis with remembering things, it puts a lot of pressure on you and especially when you have to remember appointments or remember what time I meet and so on. So am I going you know when actually meet them at you know, just little things that do become a bit of a pressure. Yeah, honestly,
Chandos:I think like with medication, I always forget to take it or I'll think I've taken like my job for my like arthritis. And because I don't want to take too much of the medication, I'll just take it in fear that I'm going to like take too much and it's going to have a negative effect. And like I'm the worst at remembering people's birthdays and things like that. I know it's easy to forget when someone's birthday is but like Facebook will send a notification saying I would so and so's birthday message on their wall and then something will distract me and five minutes later I forgotten it's their birthday. And then the next day I'm like Happy Birthday sorry it's a bit late like I'm always that person like Sorry it's a bit late on their Facebook wall but like it's just one of those things and I think it's so easy to like like there's so many things going on at the moment anyway that your memory My memory is rubbish anyway. So I did with the like fatigue and things like that from from having ongoing signs and symptoms of like an repercussion to having a tumour like is so time consuming. So
Sarah:you've had issues with work, haven't you? Like? Anything that going back to the You said so now that somebody's telling you to do something and you forgetting to do it? I know. You had an experience with a job you had didn't you wait, you talk to me about you know, somebody could ask you to go and get something done try and get it and by the time you got to wherever it was to get the thing that you'd gone to get you'd forgotten what it was going to get. Yeah, it
Cameron:was I was doing an apprenticeship so I was supposed to young and I was in the workplace so it was a you knew you weren't gonna get the best jobs and they were gonna get kind of knocked upon because everything you Jim's kind of the watching you the trend and everything so you kind of when you get someone puts a bet trust in you do a job I you know, it's just basic things that think you can't do it. Or you should be able to do responsibility on your own to go do it. And so it was basically the workshop was probably 100 metres Max across the yard from the office to get my job, I'd walk across the yard, I'd walk in, I'd be like, like, like, I never spoke to anyone. I've never seen anyone be liked quiet today, there's nothing to do, I'll just tidy up. So I look busy. So when the comment kind of bought me and then there's me to leave it open and be like, where's the job? You know, we need it, we're going out to to do this, it was only a little job, it should have took you five minutes. You know what, where is it? And that happened multiple times. And it's, it's annoying because you get frustrated with it while they're frustrated and angry with it. Because the thing is just a young kid slacking off. But it does now even afterwards in jobs. Since there's been people who just don't eat as much as much he explained to people about it. Forget that you've got family problems. And well, why have you done this? Why would you do not even though you do extra than what it's it's hard because it's it's like what I've said before and about it not being a physical disability, a best example I've heard is, you know, if you're in a wheelchair that wouldn't ask you to walk upstairs. But it's because it's not physical that then forget, either forget you've got it, or because they do it, everyone else should be able to do it.
Sunil:Has anyone ever had it where people talk about like forgetting things, or forgetting things that they've been told, as your brain ever, like, filled that information in with something completely different, but you never You haven't even realised like I've been told to go places work, my manager might have told me to go somewhere completely different. But I would go somewhere completely differently, just because I didn't remember it. And my brains just automatically filled in information. And it's been somewhere completely different somewhere might have normally working or somewhere that like information that your brain already knows. And it's most likely going to be that place that you need to go. Yeah, because that feels so weird when that happens, because of my
Chandos:like OCD and the intrusive thoughts that I have part of the OCD, like these intrusive thoughts. And so I'll have more ease what I might have done or things that might have happened. And so my memory will take those as reality, even though they're like made up thoughts. And so sometimes I'll be worried I've done something. And my memory is so rubbish at times that when I'm tired, especially if I'm having a really like fatigue led day where I'm just tired, and I'm not really I haven't really slept the night before, whatever. And I'm stressed with meetings and stuff like that my OCD will plant a thought and the memory will just become it will be seen as real when it's not. And so I always have to remind myself that that's an intrusive thought and things like that, I need to figure that out.
Sunil:Because I don't really know until like, like someone says, That's not where I told you to go. That's not what I asked you, I would I would assume that that is like real, completely real. And that's where I'm meant to go. And that's what I'm meant to be doing. But until that person goes, No, this is what I asked you to do know, like, especially if it's a change to the routine, if it's like the same thing that it doesn't happen because it's it's like my brain predicts This is most likely going to be the scenario that's meant to happen. So this is this is what you should be doing kind of thing.
Cameron:I feel like I can relate to them things because sometimes hard recall information are fine. Sometimes. There's what you said before about kind of memories get mixed up with dates and stuff. Sometimes I'd be like, you get asked to do something. But you think, Oh, I got asked that yesterday, or when you try and recall a memory and you go I did that a few days ago in the bar. You did it two hours ago. See, I didn't know. I've been like sometimes sometimes my memories or thoughts, you know, get mixed up in the dawn of like chronological order, like in the order of you know, in the right time, sometimes just bunch of thoughts, pictures, whatever. But when I try and recall, you've kind of got to guess and play some way you think that when when the work
Sunil:does because you got to kind of predict when is it most likely happened? That situation? If you remember something didn't happen yesterday, or couldn't do it this morning? Or like was it a few days ago? Yeah, I know exactly what you mean. You guys
Sarah:have particular coping strategies that you use, but trying to remember things do you write things down or use an app or is there anything that you find helps to put those things in some sort of order or help remember things?
Sunil:So I write things down. But certain situations, you can't really write things down. Like if you're talking to someone you can't just randomly start going like this because for a normal person that seems a bit odd to them, and it probably comes across as you don't really want to talk to them. But when it comes to see Like if you're trying to learn something new or if you want to remember something for an event or even if you've taken medication or like certain stuff like that, yeah, writing things down, it's I think, like, super important or else it's just it can get different adults things build up, it can get really, really difficult to know when things are going to be happening. This ops as well, I don't really know how to say it. It's not funny. It's an urination. I think that's really I have dyslexia as well,
Sarah:you mentioned that you've got referred for Neuro rehabilitation to a neuro psychologist. How did you get that? And what is that about? It's been a little bit about what what that is.
Sunil:So they basically test, they noticed you after a brain surgery, everyone has a test that they do to check, mutability, as well as the memory and all these different things. And this is basically when you go to the neuropsychologist, they do that in more depth to see what's going on. And then they help you with strategies to cope with what's actually Boehner up and they give you strategies on the parts that you struggle with. And so because the test is more in depth, it's like, they'll try to adapt it to your specific situation more than because everyone, everyone's memory is different as well.
Sarah:Common challenge was, do you remember having a test after your surgery? No,
Cameron:no, I didn't have a test. Let me think I got referred or someone and remember what a roll was,
Sunil:you don't get referred at the start. It's like straight after your operation, like a few days in, you get like, see if you're walking or Re and then they do this like, Well, for me anyway. And guess it's not the same every hospital?
Cameron:Did you have brain surgery or surgery?
Sunil:No, this was very surgery, both of the brain surgeries that I didn't have,
Cameron:I didn't have surgery, or after my treatment. I did go see someone to try and help them on every walk. I only saw him a couple times. So I've got things of ways of doing things like well, I'm the worst, or is. Everyone's on me write things down, make notes make in the worst for it. Because I've been late. No, I'll be fine. I've remembered a couple of people's conversations or whatever I need to remember to I'll be like, I can do this without making notes. And I'll get really confident and then I forget something really important to say usually for me ignore it on the phone because you always got you're still one of these people think I can still do it. I'm fine. I'll remember because I get these little ops in between the downpipes of I remember, I remember it I'll remember it then I forget a lot of things that I need to remember. It is things I make notes on the phone, on the calendar, making sure debt using reminders I do with my medication, I've got a tablet box, it's got four separate slots for the medication for that time of the morning, I'll have afternoon, Oliver evening, I love the nighttime, no lobby separate. So I'll make them up for the week or a few days. And I'll grab a pot to that day not be my medication to that day with me. And I'll know which kind of which doors will open for the medication. But each time and another thing is putting alarms on whether it's only watch whether it's football, or whatever, alarms, reminders a lot, really as much as I can do. I'm forcing myself to try and get better at this. But it is probably a long time late a lot later than it should have been. But it's it's getting there. But that's that's why I'd be honest, I
Sunil:understand. I don't like setting alarms. And well, I'll get really excited about doing it after someone says it like now, after this meeting, I'll probably do it for like a week, I'm really gonna go and do this. And after a week, it will just disappear into thin air. It's
Cameron:always a good idea. And I'm probably my own worst enemy, because I'll come up with the idea and how it's going to be all fabulous and glorious and whatnot, and then shoot myself in the foot. Don't do it.
Chandos:Yeah, I'll do like alarms and notes. I also since like lockdown started, I start putting stuff on my calendar in between like work items, or like I'll do like a to do list and then I'll say, right, and this day, I'm going to just do this, I'm going to do that thing in the morning. And that thing in the afternoon, even if it's a really basic like putting a medication reminder on my laptop working like during the day. So having that notification pop up on my calendar. And like there's websites where you can do like a to do list for each day of the week, you can really break it like a big task or then smaller tasks to get that one done. So it's not me because if I try and remember to do something big, I forget really easily. Whereas if it's a small little thing that then builds up to the bigger tasks being done. I find that a lot easier. Yeah. And
Cameron:I've tried a lot more recently to do great things down trying to aim for say within a way to goals to three goals and aim towards those goals. because then you can go rate accomplish that. Or if you do it day by day, small psych medication out bang, yeah, that's, that's domestic talk, that's my achievement for today. Sit down at the end of the day or the end of the week or whenever can go, I've accomplished it, not only we've been productive, productive, you can make yourself feel good, because you go, Oh, I've achieved all that, you know, is small as yard goals. Built with boost confidence?
Sunil:Yeah, I need to do that, because I set myself massive tasks. And I'm like, and then I procrastinate, because I'm scared to do them. Because I know that, like, I know that my memory might not allow me to do that. So I shoot myself in the foot before I even try it, because I just assumed that I won't be able to do it. So that's, that's one of the things that I wanted to actually say, you have to kind of motivate yourself a little bit to actually even with the memory stuff. Because you can be negative is probably one of the biggest things that stopping me from improving with my memory as well as I should be. Because I try and avoid things so much because of my self esteem stuff. Because it's not I know, it's not as it should, as it used to be. And I'm so used to life not making notes and having to set alarms. Whenever I do one of those things, it makes me think about how bad my memory is. So I don't want to do it. So every time I set an alarm on my phone, my memory is shit. And I need to do this too. And I get into that negative mindset. And it's not it's not a nice thing, do
Sarah:think that's almost as bad as the memory problems itself. The fact that it's probably not the person that you were that after years, this wouldn't have been a problem you'd never have had, you know, like you said, you've got an hour reminders and things and might make notes for things that you would never have had any issues with. And suddenly, it's like a constant reminder that you're not who you were. thinks happened.
Sunil:Yeah, it's not, it's not a nice reminder. It's it just makes you feel like, it's like it makes you think like how easy things were and how hard the basic sometimes it's not even the hard things that hard. It's like the most basic of the basic things. And when there's an emotional element to it, like if it's something that if if it's about someone that you care about, or it's something to do, where you don't remember things that you should remember that like have like emotional relevance to you, it makes you feel even crappier because, you know, you would remember those things, and now you're making you're making someone else feel worse. I hate it. One is specifically affects family. I hate that. Because I know, I know, my mom reminds me of stuff and insulin, specifically, because I need to take insulin because of diabetes. And sometimes I can take way too much, because I will forget, I've taken it once and I can take double the dosage. And people can end up in hospitals. Because if your blood sugar drops too low, you can go into a coma and stuff like that. So I know my parents are constantly worrying too. Every time I take my insulin, that's a reminder popped up and it feels horrible.
Sarah:She will read about your future in terms of like you said, You've got to have your parents to remind you of things. She worry about things like being able to get a job, get a job and have to learn new things, those things that kind of worry you about what this means for you longer term.
Sunil:Yeah, they do. I hate talking about what I want to do now, even though it will used to be like the most enjoyable thing that I could think of. And I used to do it every single day. I hate doing the thing that I loved the most because of my memory because it's it's hard to do. But it was so much more fun. When I was younger. I would I don't really like talking about it, I did. I failed a lot in life that I don't really like talking about but the thing is, I need to learn to talk about it to overcome it. And then that's the only way that I'll be able to progress into the career that I want.
Cameron:And just say, cuz you're saying you don't like something you love because your memory does, it does affect your life, what comes easy, or, you know, something that was natural, enjoyable, becomes such an effing such a chore to do with, you know, I haven't remember everything, you know, regurgitate that information. And it's, it's sad to hear but it's at the same time I feel the same because kind of slows what you got out or what you enjoy, which is a shame. I do photography, but sometimes it's a chore and it's it's an effort and it's it's hard to remember what you learn or what you need to do, or even even something new, learn something new. You've got to go through all the thing of making it shapes you've got to implant in your memory for it to stay and that means doing it over and over again. You know, the good and the bad bits of it. You've got to you've got to get through the bad bits of it or if because Gordon enjoyable again. Yeah.
Sarah:Do you think that the neuro physio Oh, yeah. Do you think that's helped? Or did you have high hopes written? It's kind of not work when you went into it? Because I remember when union I mentioned it, I thought, wow, that could be answered for so many people. How has that worked out for you in terms of your experiences that
Sunil:it's not really it did bring my hopes up. It hasn't worked as well as I wanted it to be. I thought it was the solution to all my problems. But clearly isn't that it's just at least I know that there's the main thing is before I was like, it felt like something that I was just making up because it didn't feel because I knew I was having the problems. But I just thought maybe it's because I wasn't trying hard enough to remember because like, that's what I just assumed I don't I don't know why. But if like the neuropsychologist after doing the tests and having something physically that to say, Okay, you do have issues, and it didn't, it didn't solve the problem. There is things like writing things down doing, using apps or doing these type of exercises like, like this word games, and math schemes and stuff, and they don't they help a little bit, writing things down is probably the best thing. But I have dyslexia, so it makes writing things down is easy part, but reading the mouths hard, which, which is, even when I do those, the main thing is the self esteem thing. I think that the neuro psychologist said, even though it's hard to do is good to just do it do things, especially like talking to people and having conversations and trying to remember even though I don't remember, it's okay to not put in a dot, basically, don't put too much pressure on yourself, which I think is really important. I think I think it helped in the sense that she's acknowledged the issue, and she tried to help, or there's been, there's been times where it was kind of ignored, because it wasn't like when you have brain surgery, the main thing is getting the tumour out and making sure it doesn't grow. It's not all the other side effects that you have. It's not about the memory. It's not about all those kinds of things. To be honest, the neurosurgeon, I guess, it's not even in the job description to do that their main issue is to make sure that the tumour is out or extend life expectancy as much as possible and make sure it might be a cure.
Sarah:Do you think that's the big part of it that that they look at a cure being removed from the tumour, whereas for you guys, things like memory and stuff is as important as whether they do something like get the whole tumour out, it's what things like this damage that's done to your memory and stuff. That is just as important.
Cameron:It's more I think it's debatable, because you kind of got to look at your health from both sides. And it does affect your memory in it's one thing people struggle with you've, you've got aware of what I don't know, it's a hard kind of argument to have, really, because, like, when you struggle with a memory and everything you say, you know, they should look at that side of things, but I think they just need to have the research in and see what what is the best solution or answer because brain tumours. I know not all branches, you know, the cancerous or, you know, get the benign ones and stuff. But it's it is a bit of a difficult question really where you
Sarah:guys told about things like how badly your memory and stuff could be affected? Or was it when before you had surgery was it more about this is what we need to do to get the tumour out. And it wasn't really the effects like memory and things weren't really talked about it was the physical side.
Chandos:I think when you're in that moment of you've got I've been told you've got this inside your head, the priority is just get out of me make it make it go away, do other stuff in but my focus was on this object living inside of me almost. And I just wanted rid of it or to have less of it. And like because obviously the symptoms get worse when it's inside, like the memory is really bad. So you're really living with those problems. But I found and so having it even a little bit better possibly from having the gym removed was a bonus, but it is discussed, it's just probably not in as much detail as you realise you needed. Now looking back.
Sunil:I don't actually remember what I know, they talked about the thing that I needed surgery and stuff, but I don't think it was mentioned. Maybe it was because there's been times where I asked questions and they'll reply, and I completely forgotten that they told me certain things. I'll need it in a letter or I'll read that they have told me actually and it's in a letter that they've sent afterwards to my GP and it gets sent to me as well. But I don't think they've I don't think I don't think memory was talked about that much. I don't think it was talked about at all. It was more than in euros. I call this that I saw that actually dealt with the memory stuff. Do you think
Sarah:that would have helped that if you'd have been prepared for it before? Because it sounds like your experience was you kind of weren't sure whether there was a problem or not after until you saw the neuros psychologists who validated the fact that there was something wrong, that you always needed that validation that there could potentially be something wrong, that it wasn't just you making it up or being lazy or Yeah,
Sunil:that's the biggest part. It felt like I was being lazy and not doing things like I shouldn't be or I don't know, I'm just not trying hard enough to listen to someone. That's what it felt like. Like, it's just yeah, when someone told me I shouldn't be like this, but it was like someone telling me that was what yeah, the reassurance was nice. I don't know why it shouldn't have been.
Sarah:Do you think that's making things easier for you now that you've got that? You know, okay, I have got memory problems, or do you think that's not making?
Sunil:For a little bit? I was like, Oh, I don't know, you get? I don't know, it's different. It's when people say nice things, it makes you feel good for a little while. And it is really nice to have that. But when it gets back into the normal routine of things, and you realise actually still having issues and it's not like before, there's multiple things that can go to your head that can put you in a negative mindset, and pulling yourself out of that can be really, really difficult. Sometimes, sometimes, I won't even, I won't even feel like my memories. Even though I have issues and I'm struggling with the memory stuff. I'd be like, okay, it's fine, I can still do this. And I will try again. And I will try again. And I'll try again. And I'll try again. And it gets to a point where you try so many times a few days later. It's like is it worth trying and I've had this conversation with the neuropsychologist and some things she's like, maybe started to look into different career options than what you are what you want to go into because it might you might not get there and you might be pushing yourself more into a downward spiral than you want to me.
Sarah:That must be quite hard because you were doing you've done your degree you were doing your masters and and all of a sudden you're Kent Beck kind of thing. Maybe you need to rethink your whole life.
Sunil:Yeah, that's it's really hard. It's it's like you expect things to go a certain way by the I don't know, by the way you think things through and it doesn't go like doesn't go that way. I guess it's it's the same with normal people as well. I guess you don't always it life doesn't always go the way that anyone wants it to. But I don't know. I think it's worse when it's not in your hands. Sometimes. If if it was just like, Okay, I'm actually just doing a shitty job at this. You feel really shitty, and then you feel really bad. And then after I don't know, maybe so long, you're like, okay, yeah, I messed up and I should be doing something. But with this, it's like out of your hands and you don't know where it's gonna take you next year, I might end up in surgery or two years from now, I don't know, like after my mind is a benign tumour, but it grew back into yours. And I needed surgery within two years is a great to tumour. And my doctors already told me because I asked so many questions like there is no cure, and it's going to change into a great for eventually, it's going to be cancer. So it's it's like a nice just when is when is that going to happen? It's always in the back of your mind as well. So it's not just one thing I don't think that affects affects your life is there's lot of things that are involved. And I can't list everything right now. But it depends on like, everyone's life is different. And whatever they do on a daily basis for me,
Sarah:you and Chandos have both had recurrences, haven't you? Does that affect the way you see life? The fact that actually you've had a chain where you've got treated most people kind of go at that point? Well, that's okay. I've been through this and I need to get on with my life. But wait to come back. Does that put you in a different mindset of okay, when's the next time? You know, or?
Chandos:Yeah, it really does. It makes you think like, when's it gonna happen next and stuff like that. And like people are always like, yeah, you've been it three times already. And I'm like, Yeah, but it takes one time for it to be stronger than me then it's the opposite outcome and what I'm hoping for, right, I could beat it four times over. Now making it like seven times I've gone through surgery and fine, but one time through surgery where it goes the other way and always clearly in your mind, but I guess you just gotta keep moving forward and keep just taking it as it comes.
Sunil:I get exactly what you're saying. It only takes that one one thing to go wrong or one thing that might push it and it's not even I'm not even scared of like the dying part of everything. I don't know if I should say that but it's more like being completely not me anymore. If that makes sense. We'll still be here like it's not it's not me anymore.
Sarah:Do you think that time you have like a recurrent it takes a little bit more away from you is that what kind of what goes through your head a little bit?
Sunil:I still think I'm the same person. I've not changed as a person. As in like, I still think the same way obviously forget things but it's like being in that state where you can't you can't look after your your basic needs, like being able to feed yourself and doing those kinds of things really scared me and not be able to interact with people have your personality and even make sense don't yeah, that's even though I don't talk to many people anyway. I would still like to think to myself, which is
Sarah:it's good to have a choice, isn't it to not speak to people out of choice that I just choose to speak to the small group of people, I want to turn not having any choices, a big difference?
Sunil:I don't like to rely on other people. I'm so sorry. I'm still thinking back to the thing about if, if, like, the daily things that affect you is worse than the actual tumour itself growing and operations? And what cam said? And I think it is equally Yeah, it depends. What's in your mind at the moment feels like it's the worst thing at that moment, whatever, it's affecting you at that specific moment. But when when you're going in for surgery, then that feels like the worst thing at that moment. It depends on it depends on what, what, what period of the diagnosis you're in, then after surgery or before surgery or during surgery time?
Sarah:What advice would you give to anybody listening to this, about how to deal with having issues with a memory,
Sunil:the best advice I can really give someone is with self esteem and talk to people that are like, accepting of it and accepting of you no matter what. And we'll just kind of divert you from that specific thing. Because without having that self esteem, you're always going to keep pushing back those little things that you should be doing, like writing things down or doing something that's going to help you like using harps or wanting to do I don't know, get into the career that you want to do, or do all those things. If if you always I end up focusing on the negative things for some reason, which, which does affect my progress a lot, because I will procrastinate not because I want to watch some video or something just because I don't want to do it. Because I'm a little bit scared that all these other things are gonna run through my head, and I'm gonna think I'm not capable, or I'm just, I feel like I'm incapable of it. To be honest, completely honest. It's, it's not easy as all us the US use this app or do this or write this down. It's not as easy as that, but a combination.
Cameron:I think the biggest thing we need to serve as advice is acceptance. Yeah, once you accept it, you can put measures in place, like whether it's keeping the notebook on yet or make notes and before and, or whatever, whatever you find best. Once you accept it, you're more willing to do things because I think from experience because that was one thing I struggled with is acceptance, those eight nine hours find out and do it because you'll remember one or two things and you'll forget Lord be late. Well just take a notepad round with your pen and paper, no, no brlf era and then you forget something important, or just try and try it, just try different things. Try different things. It's different for each person. But you'll find your own born way of making notes or remembering
Chandos:things. I think just try it cuz everyone's different. And there are so many like ways of apps or like websites where you can track things and keep a log of what you've done and what you need to do. And I think like there's so many YouTube clips as well, where people have reviewed them. So just find out and try them out for yourself because everyone's gonna have a different experience of things. So just see what works for you.
Sarah:Thank you guys. Well, we're gonna end it there. But yeah, thank you guys. 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