Let's Talk About Brain Tumours

Episode 34 - Living with a Brain Tumour At Christmas

• Episode 34

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In this episode, we talk about some of the challenges of having a brain tumour over the festive season.  For some of you, this might be your first Christmas since receiving your diagnosis and have mixed feelings about the impending festivities.  The team share some personal experiences of how having a diagnosis has changed the way they celebrate the Christmas period and ways they've found to navigate through these.

You can read more about coping at Christmas here

You can also contact our support team on 0808 800 0004 or emailing support@thebraintumourcharity.org

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Sarah:

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. Welcome to the podcast. I'm joined by Andy, Anna and Chandas to talk about the holiday season and some of the challenges and ways to manage the challenges that people invariably face over the Christmas season. So welcome to the podcast, everyone. Hello, I think this is one of the first ones we've ever had all of us together. So it's quite nice to have us all together. I'm going to start by asking you more just to because some people might not have listened to the podcast before. So if you could just introduce yourself.

Andy:

Okay, well, I'm Andy. I'm in my 50s look a little bit like Tom Cruise's younger brother for those watching. The reason I'm part of this podcast is because I'm living with brain tumour I had a large meningioma, diagnosed and removed about five years ago. And then this year, I had some regrowth. So I've had stereotactic radiotherapy as well. So that's hopefully going away, but I'm kind of living with, with the symptoms and trying to manage my way through sort of how I've changed and how I'm living with a brain tumour.

Chandos:

I'm Chandos. I had a benign brain tumour in childhood. And ever since I've had like a physical disability on my left side, and related mental health because of the impact of going through treatment at such a young age, I've got anxiety and obsessive compulsive disorder. And yeah I was an ambassador for the brain tumour charity a few years ago,

Anna:

I'm Anna and I'm one of the current cohort of young ambassadors here at the brain tumour charity, and I got involved with the charity and start with kids, I lost my dad to brain tumour back when I was 13, in 2011. And it's just kind of a way, I think, for me to keep his memory alive and speak to other people as well, like Andy and Chandos, who have had different experiences of brain tumour, but we can all kind of come together and discuss them and kind of help other people.

Sarah:

Thank you. And I don't know if I've ever explained who I am. But I'm Sarah and I work for the brain tumour charity and have done for nearly five years now. And I'm privileged to get to talk to people and sharing their experiences and travel the journey with them. With that said, we're here today to talk about Christmas and holiday season and what that means for people who have a diagnosis, and how Christmas and celebrating the sort of festive season has changed or impacted or ways in which you have to maybe plan things slightly differently when you've got a diagnosis. Andy do you want to tell us a little bit about how what Christmas means to you at this point in your diagnosis. I mean, you've been you've had five Christmases now with the diagnosis.

Andy:

Yeah, so I've got three children as well in their 20s. So Christmas has always been a big deal for us. When I was first diagnosed, it was just after Christmas, ironically. So my, I was watching the BBC 2 Top of the Pops special. And I started feeling really rough. And that's when I first thought something's not quite right. And then two weeks later, I was diagnosed and two months later after that surgery, so that kind of took the shine off Christmas a little bit for me. So I try and look beyond that now. So the first Christmas I had after my treatment, I was just really pleased to be here to be perfectly honest, because at the time of the treatment, there were times when it looked like I wasn't gonna make it. And I did. So I think we all the family were brilliant, by the way. And we all just had such a good Christmas because it felt like we had to make the most of it because I might not have too many more at that time. Now I'm still here. So that's that's five Christmases later. So I think it's slightly changed now in terms of going back to last Christmas. I think the view now for me is that I'm going to be around for a while. So we don't have to make every Christmas like it's the last one that makes sense. So what we try and do is make it as normal as possible. So we all dress up in very fashionable some might say silly Christmas jumpers. We do all the full works, the trimmings, the party hats, you name it we and last Christmas there were eight of us in the same house. So we try and treat it normally and as the person did with myself, almost like the biggest compliment for me is when everyone else just gets on with their Christmas and enjoys their Christmas, especially the family because they've had the product with me for four or five years now. And then if we can just I can feel happy that my diagnosis and living with hasn't detracted from Christmas, if that makes sense. The risk of going on to live there what I do find those fatigue is For me, probably the biggest challenge I have as well as the tinnitus and, and a few other challenges and not being able to sleep and it's the fatigue. So what I've got into the habit now of doing a Christmas in the family and people around me recognise that is that I get overstimulated. And if I get overstimulated, I think it's fairly common for people with brain tumours or brain injuries, is you get fatigued much more quickly. You wake up Christmas morning, full of feeling like a 10 year old again, and it's magic, or where's my presence and all that. But then you have to just say, Hang on a minute, cool hair, just you've got to pace yourself, certainly on Christmas Day. The other thing for me, which is a challenge is creature of habit. So if I, if I don't eat, for example, bang on 12 o'clock, midday for lunch, within about half an hour, I start feeling pretty ropey. And that, again, is quite common with people that have had brain injuries, they get into a routine of eating little and often. And I made the mistake last Christmas when the family said, oh, we'll have dinner one. Yay, fantastic, I can hang on, we didn't actually eat till gone two o'clock. So I was actually starting to feel quite rough. But I didn't want to say anything. And so you know, no to sell for this Christmas is make sure I've got a little snack or two tucked away. And there are one or two snacks around and Christmas Day, which if it gets to 12 o'clock, and you know, because Christmas dinner, I don't cook by the way, so I shouldn't cast aspersions, it all seems to take longer than people say. So I've learned that if Christmas dinner is gonna be in half an hour, that's an hour. So it's less than that. So just to pace yourself. And the other thing for me, and I tell the family this and the people I'm with is I might go quiet and I might need to turn myself off to another room. It's not because I don't like you. Or because I'm getting annoyed by the conversation. It's because I need to have usually two or three times during the day about half an hour when I'm just calm. And it's important because if I wander off and disappear for half an hour, I think people go, what have I said, Have I annoyed Andy, have I have I done something wrong? And you say no, no, it's just be I need to take myself off after, please don't come up and ask me how I am. Because I don't I just turn myself off for half an hour, calm myself down and just try and recharge, if that makes sense. And then get back to the festivities and the family. have got to know that now that in Christmas Day particularly. There'll be times when I just effectively disappear off. And it's not. It's not anything wrong. That's just to be expected.

Sarah:

That's really important as well to let people know that because like you said people automatically want to go I say to you, okay, you know, what's happened, you said something wrong, or if I did something to upset you. And it's just that making sure that you've had those conversations ahead of time that this is going to be difficult. You know, there might be times when I do just need to take myself away. Just let me be it's fine. It's nothing wrong. It's just, it's quite a lot going on. And I just need a bit of time out.

Andy:

Yeah, it isn't that it's important with people, because quite often you're with people at Christmas you don't normally spend time with. I mean, my kids in Estonia so we don't spend time together. And last Christmas, there were eight of us. So there was another four or five people who I only see and I think that's quite common that whether it's a good thing or not, isn't that better, but you end up spending a lot of time over Christmas with people you don't normally spend time it's so I know with my family, if I put the noise cancelling headphones on and sit in the corner for half an hour they'll be alright. That needs a rest something but with with the relatives, they don't know that. So it's I didn't make a big Tara on Christmas Eve saying this is what's going to happen. It was just a quiet conversation with with each of themself either way. If I do disappear off for half an hour, don't come and look for me. Don't worry about things. This is just how I am and what I found is when you explain a law that everyone is alright, I get that. That's fine. Off you go. And when you come back, you don't want them all to go. Yeah, and he's back. You just want to quietly get back in and quietly sort of get back into the swing of watching Chitty Chitty Bang Bang or whatever is on the Christmas afternoon.

Sarah:

How about you Chandos cos you've also had quite a few Christmases now.

Chandos:

Yeah, I think I've known more Christmases with the brain tumour or with the effects of then without I think because I was diagnosed I was three and it's nothing like 24 I just did a calculation I very quickly 24 Christmases with with a tumour or with like the effects of I think like when you're a kid and you've like just come out of hospital, you're in that hospital at the time, we made an effort to like seal the family every Christmas and everyone lived quite close together. So we could meet up at Christmas and now we're all adults, and none of us are under the age of like 20 So and everyone lives so far apart. So it's hard to meet up at Christmas for us especially like because we're so far apart and around the world and stuff so meeting up is quite difficult. So it's quite a small Christmas because my sister works for the NHS as she shifts over Christmas period. So it's hard to like plan me thing as well, but I think the contrast is quite similar to Andy Whereas now like, if any time alone, I'd just go and sit in my room and my mum and sister know that I just need my space. But otherwise, the three of us just try and spend as much time together as we can when we're not working or wherever and stuff like that over Christmas period. And I think that helps me a bit more than like having a small Christmas because I think I can get really stressed and really overwhelmed and quite tired quite quickly. And that's what I found out when I was a kid, there was so much going on that I wanted to be involved with, because I was tired all the time. Even post surgery and recovery and stuff, the fatigue is constantly there. So I think that really helps like having that shift from going from really busy Christmases to having just not quiet but chilled. If we see friends, we see friends, if we don't, it's not a big problem, because we know it can see them anytime and stuff like that and just just go get a chilled pace really helps. I think

Sarah:

You both touched on the fact that it is a time when you're with your family. And that need to kind of balance their needs with yours and sense of you don't want to ruin their Christmas by saying I'll don't want to be to do or lots of people around, because it's their Christmas too. But you've got to balance the fact that you're maybe not able to tolerate those kind of big, crazy, everybody coming round. Do you kind of feel a little bit sometimes like, oh, you know, I've got to just suck it up a little bit. Because I don't want to ruin the fun for everybody else. Or do you kind of feel like actually, you know, I just need to do what I need to do.

Chandos:

I think when you're when you're a kid like you just want to be involved so much. I think that's what I don't want to say like Grinch here. But when you're a kid you love Christmas. But as I've got older, like Christmas isn't as much priority and what me like I enjoy it. I love being with the family and going Christmas markets when my grandparents can come visit and stuff. And as I got older and stuff that that vibe is kind of like chilled out a bit in my in my system. And now I just it's like any other day, pretty much. It's just, we're getting together to celebrate stuff. And just I think that and when we were kids, we were I remember, like we used to make our Christmas trivia. So that used to be a big theatrical thing, like making a Christmas tree out of whatever we had and stuff when it's because we came here from Africa. So like we have a lot. So that tradition like carried on. But as we've got older and stuff, it's just been like, easier covered, like a fake tree and stuff like that. And that's nothing doesn't detract away from it or anything. I think I just don't see Christmas as big as, as I did when I was a kid. So I know what I need and stuff and I prioritise my health a bit more. And if that means taking time out and going to my room for a bit and chilling out watching my own movie or something, and just relaxing in my own space is what I need. And I think that's what matters. Because at the end of the day, like Christmas shouldn't put your health at risk. So

Sarah:

I think there's a lot of pressure isn't there to be having fun. And people in general, even without brain tumours tend to put a lot of pressure on themselves to be busy and do things and go places. And most people by the end of Christmas are exhausted they because they've done too much in general. So I think having something where you It forces you to say actually, no, I need to take time out being strong enough to say yeah, I need to do that is never a bad thing.

Anna:

Just linking to what Sarah just said as well, I feel like that pressure that like you said everyone kind of feels it. But just that pressure to almost be happy and jolly at Christmas. I think it's a real fit, like just a bit of a stigma that everyone thinks that that's a certain way that you have to be whereas obviously there's sometimes circumstances where you're not. And I was just curious as to whether there's been circumstances in either of your guy's diagnosis where maybe there's been some bad news, or maybe you've just not been feeling quite yourself around Christmas time, maybe not necessarily Christmas Day specifically. But in that whole big lead up where everyone's meant to be busy. And doing all these happy things. I just was curious as to whether you felt that pressure to be jolly in a time when maybe it's not a very jolly circumstance.

Andy:

I think for me, it's the immediate family have been really good. So as in my kids and my wife, it'd be really good. They understand me and my diagnosis and what triggers me to feel rough. And what really, you know, how I have to manage my symptoms. So what I find with Christmas is when I'm around the immediate family, it's okay, they're not expecting me to be jolly and happy all the time. The challenge is, again, when you're with people that aren't used to and you're right there is that expectation. You know, you don't want to be you don't want to take the whole mood of Christmas down. If you're not feeling very well. So again, I'm Chandos might be difficult for me it's not too bad as long as I've explained to people who I don't normally spend time with. This is my situation. These are my symptoms. This is what it means for me at Christmas and if I am a bit well I will because there'll be times there might be grumpy, there'll be times when I need to be quiet and things like that. And there are times when quite frankly, I'll be honest, I sweat, annoyed, hacked off of the fact that I do feel like I do feel and I don't feel like I used to feel. And that I need to just explain if that happens, it's not just me not liking them or like in the situation. It's just, it's just not just me. It just happens all the time.

Sarah:

You also touched on your first Christmas after your diagnosis, going into it kind of that sense of feeling like oh, this is this going to be my last Christmas, you know, when that added pressure then to sort of make it an even bigger, bigger deal. And that forced happiness or most that false fun of, we've got to make the most of this, we've got to go all out for this, because this might be my last one kind of thing.

Andy:

You're absolutely right. I found the first Christmas is probably the toughest I've had since my diagnosis and my operation because exactly, I didn't know how to manage my own symptoms that well by then. And so many people were phoning up on Christmas Day, friends and family, how are you? And do you have an a nice Christmas sort of thing, because they felt they should. And I didn't know how to manage my sort of fatigue. And I felt really rough at the end of and boxing day of my first Christmas. And I was really feeling quite bad is this is what it's always going to be like, am I not going to position and I was really getting frustrated after the first Christmas of thinking is this life for me now that every Christmas, I'm not going to enjoy it, because I'm going to have to endure it. And that that was definitely the case with the first Christmas. After that when I've been able to manage my symptoms a bit more and explain to people that this is how I am it's been a lot easier. I also find spreading things out helps so you know, don't do a Christmas shopping in the last week, which for a bloke is a challenge. And also things like the Christmas eve if I can try and do as little as possible. Also Boxing Day, try and do as little as possible and except the fact that are going to need to spend those days recharging my batteries. So for example on slightly digression on Christmas days during the year when I drink alcohol. Because after my operation, I don't drink alcohol. So I'm always afraid it's going to mess with my brain. So my kids my nickname now at Christmas is two beers that I'll have a couple of days on Christmas Day and they'd love that kind of thing. So that helps. When you get into a routine or Christmas. I think it helps you spread things out and you feel less that you have to keep everyone else happy that you're look after yourself and everyone else kind of looks after themselves. That makes sense.

Sarah:

Yeah, absolutely. How do you feel about that Chandos Because like you said, it's been 24 years of Christmases, I'm guessing that you don't think about it in so many ways is this my last Christmas anymore?

Chandos:

I think the most challenging cuz like as a kid, like I just dealt with it. I had the illness and stuff and I had to hospital with it. But that was mainly like the middle of the year. And I had my operations around October, summer time October was the latest. So by Christmas, I was sort of back on my feet and stuff. And because I wasn't having like chemo and stuff, it was a lot easier I found over the last couple of years like since I had my last surgery in 2018 No 20 Whenever my last surgery 2014 When I was 18 - 19 I think that was the hardest because every time around Christmas, everyone would go back home from uni and get like part time jobs to fill the gap over the Christmas period. Because I was so exhausted from the semester at uni I wouldn't, I wasn't able to work. And then like people had their relationships and they were going out and that fear of FOMO like missing out on everything going to like winter wonderland and stuff, I would have it stay at home and rest and get ready like because I'm just really tired all the time, because I was catching up on resting from the rest of the rest of the semester and stuff. And I think that's still like the case now like, I think like by Christmas time when I know I can rest a bit more like my body goes into like hibernation mode a little bit. When I see those posts on social media and stuff come like I shouldn't be doing all that. I shouldn't be going out all these events like going to like panto or going to London's Winter Wonderland stuff and all these exciting things I would love to do but I did it last year my sister went to winter wonderland. I was exhausted. We did like three things. I was tired by like two o'clock, just because of the travel up there and all that stuff and part of me thinks don't bother, just do your own thing and stand out from the crowd. So then you don't want to miss out on stuff and yeah, I guess all my friends bought houses like it's the age where they're living on their own or they're buying houses and having kids and stuff. So Christmas is exciting again for them. For me I'm like in that middle bit. I don't have a kid to look after to like spoil at Christmas and stuff and you have that fear of like Am I missing out and stuff like that. So it's not so much the brain tumour is such a bit like social anxiety and how that impacts on the fatigue levels I have

Anna:

Would you you have any tips for people who might be listening who might be experiencing that kind of FOMO at Christmas and have experiencing maybe for the first or continued amounts of time that they're, they should be doing more, and they're not and they're just sat at home,

Chandos:

I think you got to do what's right for you. It sounds really easy and stuff. And I limit my time on social media, especially around Christmas, I spent half my life on social media because of the work I do and stuff. So around Christmas, I kind of just, I still go on it, like first thing in the morning or last thing in the afternoon and stuff like that, but I really limiting it. So like on Christmas Day, I barely use social media. Apart from the message, people say Happy Christmas stuff, I don't check my feed and stuff as much. Because I know it's going to be filled with loads of posts, and people being really excited and stuff. That's great. And I love that. But at the same time, I know that it might make me feel like I'm missing out. Which then drove the anxiety and stuff. And like when it comes fear of missing out with like the events and stuff, I just think I just have to remind myself that if I was there, I'd be tired, or I'd be falling asleep watching a film or whatever, no, because I wasn't enjoying myself. But I just remind myself a little bit. And like, especially with winter wonderland, there's some great stuff. But I know that walking around like a, an area like London and having all those people around, it's just gonna stress me out even more. So just remembering everyone has their own pace at things and stuff. And just remember that you matter if those simple things

Andy:

Adding to that, I think the keeping off social media is really important. Um, and I'm at the other end of scale. So don't, don't spend so much so much time certainly me. But I do find if I started looking at the Twitter feeds and the Facebook feeds, and like you say, seeing all these other people doing all these wonderful things, it makes me feel a bit more frustrated that I can't so I completely get a chance to understand what I try and do almost on Christmas Eve, the Boxing Day is just focused on who I'm with, and me. So forget the social media forget what everyone else may or may not be doing. And just try and focus inward. So I'm concerned what little mental energy I would have been spending, getting FOMO and stressing about what everyone else is doing. Try and forget that and use whatever energy that elect gives me to focus more on myself and who I'm with. So I think that that'd be my my, one of my tips on that would be just, if possible, just to try and steer clear of social media.

Sarah:

Is there any last things that you could think of to say to somebody who is maybe having their first Christmas with their diagnosis, or is sort of dreading it a little bit wondering how it's gonna be

Chandos:

I think, just treat yourself because you're allowed because I think sometimes we forget that when we're going through treatment and stuff. And when you're in that, like hospital or you're so focused on just being well, all the time you forget to take take priority of itself and things that you think would make you happy, I think you've put them behind just Yes, your health is something that will make you happy, but also, like, realise that you can have a drink at Christmas, or you can just just chill out for a bit and just take a moment to reflect and like a good, I think good watch rubbish film. Like Santa Claus films and stuff to your heart's content because I think those things do bring like a bit of joy and you're allowed to treat yourself.

Andy:

I think, yeah, I'd agree with that. And it's two things for us. One is knowing that you can still have a really good fulfilling Happy Christmas. You know, you'll people with brain tumours will have different levels of symptoms and everyone's different, but within reason you can still have a really good Christmas so don't if it's your first one don't feel try not to feel scared or too apprehensive. can I cope? Yes you can, the more you can sort of take other people with you if that makes sense that the better Christmas you will have so you can enjoy yourself you can have a good Christmas you can have a good time like Chantal says treat yourself it's the one time of year you can eat loads of chocolate salted tree you don't have to build on that. Have you a couple of days if you want another thing for me is it also keeping keeping the traditions going so for someone like myself maybe who's diagnosed later on I've got a handful of memories of happy happier and happy Christmases when I was a kid. So trying to do the traditional things. So still have a what however you do with your presence if you open them first thing if you're going to before breakfast, if you haven't, whatever you used to do, do the same thing. So still have the presence still watch The King's Speech and I suppose still watch your rubbish films. Still stuff your face full of Turkey salad tea time because you know it's all those things that sort of bring that that little tingle of magical Christmas, you can still do that. Just try and approach Christmas with a sense of you know, you can enjoy yourself and it can be good and not with a sense of apprehension and thinking what will I miss out or what can't I do? You can do everything you might suffer a bit on Boxing Day, but be prepared for that. And don't kick yourself or beat yourself up if you are fatigued on Boxing Day, that's part of the tradition. Everyone else has got a hangover. You're feeling fatigue, you get the hangover without having a beer, unfortunately, but you know you're in the same boat as a lot of other people. So just try, try and get the best out of it and try and enjoy it.

Sarah:

Brilliant. Well, thank you all. I think we'll kind of end it there. Thank you very much. Thank you, guys. We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll 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