Let's Talk About Brain Tumours

Episode 1 - Getting to know your hosts

• The Brain Tumour Charity • Episode 1

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Welcome to the very first episode of The Brain Tumour Charity's podcast! In this episode, you'll meet co-hosts Sarah, who works at The Charity, and Cam and Chandos - volunteers who are both living with a brain tumour diagnosis. 

They'll be sharing their experience of what it's like to be told you have a brain tumour and what it's like to live with a diagnosis.  We'll also be telling what you can expect from future episodes.

For more information about what we do, visit our website at https://www.thebraintumourcharity.og

If you would like to know more about our Young Ambassador Program you can find more information on our website https://www.thebraintumourcharity.org/about-us/who-we-are/our-young-ambassadors/

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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 first ever episode of Let's Talk about brain tumours. My name is Sarah and I work at the brain tumour charity. Joining me today are two of my co hosts for these episodes. Ken, who will be co hosting episodes talking to people who are living with a brain tumour diagnosis, and Chandy, who's going to be hosting monthly spotlight episodes given you all the news and updates from the charity. In a future episode, you'll also be meeting another Sarah who will be my co host on our episodes with loved ones of people who have received a diagnosis. Anyway, that's enough for me. I'm gonna hand you over to Carmeron Chandy to explain a little bit about themselves and how they become involved with charity.

Cameron:

Hi, everyone. I'm Cam. I had a brain tumour when I was 17. I unfortunately got misdiagnosed. So long while before I did get diagnosed, which fortunately for me, it was seeing a different doctor for something completely different, which then led to get diagnosed with a germinal brain tumour. My symptoms were really bad memory, I went from having extreme thirst to having no thirst at all. I had massive fatigue. And I think that's, that roughly covers it. It wasn't, I lost a lot of friends with it with being so fatigued. I was doing an apprenticeship at the time. So I'd get up and go to work, come home, go to bed. I wouldn't go out any any other time. I'd sleep most of the days on the weekends. So that's about it for me.

Chandos:

John Does everyone so my name is Chandos. And I live with Chima who Timmy I was diagnosed with ages three have undergone surgery, various points of my life. First being when I was first diagnosed, and then again at the age of six, and the age of 1819. In that in that timeframe. And this is because to me decided that it was time to return and grow slightly and kind of remain in a state of calm for a period of time and then go back but nothing seemed to be okay Touchwood I have a physical disability that on my left side as a result of where my tumour was my skull. And I also live with obsessive compulsive disorder, which is a mental health diagnosis where someone hasn't to thought that kind of impact on their day to day what they do day to day. And for me, it means that I stress about being ill or doing something wrong, or whether I've said something to hurt someone things to that effect. And it means that I have to do compulsions, which are like rituals to manage this the stress and the anxiety that comes with those intrusive thoughts. And that's me, really.

Sarah:

So do you think your OCD was linked to your brain tumour diagnosis,

Chandos:

so I developed the OCD after my second operation at age six when there was complications in the surgery that led to like swelling on the brain. And to combat that they left partner Scott out overnight to let my my brain heal and to recover. And that traumatic experience then left me with a kind of like a fear of germs and things like that, which then developed into my OCD that I live with now.

Sarah:

Wow, that's a really unexpected side effect of a brain tumour. It's not what you would necessarily think about the sorts of things like memory or fatigue and stuff, but you don't necessarily think that something like OCD would be connected to or part of having a brain tumour diagnosis.

Chandos:

Yeah, I think it's mental health in general, like having a brain tumour affects all of you and who you are. So it's bound to affect your your mental well being in some way. And to me, it means I've, I've developed OCD, but I also have other anxieties and things like that. So yeah, I

Sarah:

think anxiety is a big part of your diagnosis that both of you do you think that's something that has come for both of you, hundreds.

Cameron:

I have to second what you were saying about mental health because things have also affected me is anxiety, stress levels, all mental health base hurts. It's so many kind of overlooked when you hear about it. And then people go about talking about mental health. And they think it's a different thing. But it's all the same. Your brain works your body, it's in your control layer. And it's amazing what can change through Brachypelma suffers from severe anxiety and mass stress levels score from naught to through the roof in a matter of seconds or something really quite petty. It's sometimes hard Dealing with because you, you think it's even you think about it logically, it's it's nothing to be worried about stress about. But when you're doing it, your body takes over and you're in a completely different place.

Sarah:

And you guys became involved with the charity. I know you've both been involved with charity for a number of years. You both became young ambassadors at one point, didn't you? You both went through our young ambassadors programme. Do you want to talk a little bit about how you became involved in charity and why you were involved in this podcast?

Cameron:

Yeah, cool.

Chandos:

So I was part of the first cohort of like young ambassadors for the charity, I helped one of the other young ambassadors, Brad, I think he lost his dad to a brain tumour, and he was quite young. So he did like a campaign to raise money and awareness for brain tumours. And I was part of that being interviewed by him and sharing my story and kind of like from there, got involved with charity a little bit, and then it kind of just grew from that. And that was back in. That was back in 2014. And then I became a mentor for for cams cohort of, of young ambassadors, but I also fundraise for them and I run the marathon twice, both for the brain tumour charity and the Lewis moody Foundation who fundraise for causes, specifically the brain tumour charity.

Sarah:

That's amazing. That's amazing. Ken, what's your story?

Cameron:

Because my tumour was you get the right words. It was a bit wasn't complicated, but it was different to normal cases. And it wasn't same, necessarily symptoms or things weren't, didn't go the same way as as as dead. And I had a couple of different clinicians, basically, my clinician asked all the doctors to for the advice, maybe which way to go about things. And then eventually, when I was more or less out the other side, treatment wise, one of the clinicians asked me to basically just tell my story, a doctor seminar he was holding, which I was very nervous for, but I went down, I did it, then am a person who was at that seminar, who was part of the brain tumour charity, and call with me afterwards and said, I had a chat and she said, something that maybe gain some gain advantage from is doing the brain tumour charity, young ambassadors programme, which I kind of thought, well, I don't know, anyone else who's been through branch OMA, it might be a good thing. I was lucky, not social skills at the time. And I thought, I spoke my parents and I thought that was read give a decision that it was maybe a good thing to go down. And then it's kind of led on from there. As Chandra said, he was a mentor for our ambassador, programme. And I've gone on to, after my two years of being up, and I'm still, I still got events at the brain tumour charity Hold

Sarah:

on, you both stayed really active, even though you've finished being young ambassadors, even though you both your time as young ambassadors came to an end, he both stayed really involved in the charity, which is when we first spoke about doing the Facebook Lives, which is how this sort of podcast what this podcast is coming from. You were the first two people that sort of said, Yeah, well, we're What do you need? What do you need us to do? And since then, you've kind of come on board, and agreed to start the podcast and to start this crazy podcasting journey. And, and the way you're gonna do this is that you're both going to split, along with Sara Chalice, who's going to be doing architected by podcast, you're going to be doing episodes with us to support our community help raise awareness for brain tumours, to continue the amazing work you did his part of the ambassadors sharing your story or experiences, and helping other people to get their stories and experience out, which is an amazing thing to do. Why did you agree to see that what was it that you thought? What was your motivation?

Cameron:

I think my motivation was I was having the charity. And I thought, to be honest, I kind of jumped before a look to be honest, and I was like, I want to do something. I've tried to push myself to do a bit more things that scare me that are out of my comfort zone, which the charity has helped with. And I thought, it can't be a bad thing. It might just be one or two. I thought there'd be a lot more than people who kind of jumped on board with it, but I'm glad I got picked for it because I I wouldn't be here now. I wouldn't do in the podcast. It's made my confidence grow massively. That's about it. Really?

Sarah:

Do you think that's a big thing? When you get diagnosed with a brain tumour, you lose a lot of confidence

Cameron:

massively. You lose a lot of confidence. And what's the right word? It's like, you lose your individuality. And you kind of everyone just knows you, because of the country you've gone through. Or the brand joba, whichever? And it's you just, it's like, it's like when people clash with a number. Oh, he's the one who had the brain tumour made me speak out. But really,

Sarah:

that's a good thing. And yeah, it takes a lot. I was, I think I was more nervous than the new guys when we did that first base. But I think that's for sure. Bye, bye. You channels, what was your motivation for doing Facebook Lives initially,

Chandos:

I think after I left uni, I had like nothing really to do. Like, I couldn't get a job. So I started sharing my own story like just in public and events, stuff like that. And then I had to do with podcasting and just sharing it to different platforms. And I find it quite therapeutic to talk about things because I don't really get much even before COVID, I used to spend a lot of time at home and was used to worry about every little thing I did, and the impact it was having on other people. So just talking about it and learning from other people was just giving me something to focus on. That wasn't the anxieties, or that the OCD thoughts. And so yeah, I think I just wanted to help more people have a voice.

Sarah:

And I think that's really important. It's next brain tumours is a very unique experience. You can go into a room with lots of people that have got cancer diagnosis, but branching was a very, there's a lot more going on your brain controls everything, doesn't it from your memory to your personality, it just controls everything. And that can have a big impact when you have something growing in your brain that shouldn't be there.

Chandos:

Yeah, 100% I think it just, obviously, because it is such an underfunded area, fact categories. And there are so many different types of brain tumours, I think you're never going to be able to cover every single one of them necessarily, you can help give hope or give a platform to someone who hasn't necessarily seen the best treatment or care because of where they live in the UK or where they live in the world. They just need a bit of motivation that there is there is something to look forward to other things to be hopeful for. Because having a brain tumour does really suck at times. And it does make you feel tired and just like you're gonna get out of bed. But yeah, I think it's just about giving people that, that sense of of community.

Sarah:

Absolutely. And I think it's also about bringing some of these symptoms out into the open because I think there are lots, there are so many side effects that people have either the brain tumour at the treatment, they're on medication they're taking, and people suffer in silence. They don't know how much of this is to do with their brain tumour. I know that we've talked before and there have been other people that are like, you have OCD. I have OCD, I have OCD. And then people are starting to connect the dots of could this be related my brain tumour that because it is so rare, and most people they never get to speak to somebody else with a brain tumour, it's difficult to know what's normal and what's not what symptoms could be related to their brain tumour, it's difficult for people to know what to expect, what they can do about it, what different treatments there are available, that might help it. There's so many unknowns that when you get diagnosed with a brain tumour, that you can't just go and ask. I think with most other types of cancer, people know, you know, oh, my friend had that, or a friend of a friend of mine had that, that they can ask questions are, but I think brain tumours that fall into that category where people can go years of having a brain tumour diagnosis and never speak to or me or hear from another person that's got a tumour.

Chandos:

Yeah. I think as you said, like, diagnosis can mean different things to different people. And so, yes, I've developed OCD, and not everyone will. But there might be someone who is feeling like I did and to need that bit of moral support or need someone to look to say, yeah, you can live well with the diagnosis because I think that's the biggest thing is that in the medical, like the way that our doctors are looking at us will say we need to be fixed. Not looking at what's going on in our life at the moment like me and kambos want to work or go out and have friends and go to the pub or whatever. And obviously drinking responsibly mentioned that. But like there's so much like it's not a one size fits all approach.

Sarah:

Absolutely.

Cameron:

On that note of when you get all that the big C word, because that's all our focus on on my diagnosis was I didn't even focus on the branches, it was cancer cancerous. And that shocked me to the car. I thought, to be honest, I thought I was going to die. What was this podcast? Hopefully it can help shine a light on people who are getting a diagnosis or maybe can take away from this to get themselves checked out that there is a light at the end of the tunnel. You know, some, some people end up living with it. But the manageable, some people get cured. And that's it. So I think we need to just need to take the emphasis off comes from some in emphasise on the being cured. And, you know, know that there is a light at the end of the tunnel because I felt that my day Marxist. If I didn't decide to fight and decided to get better. I wasn't going to go I think you need that. Just confidence that we can do.

Sarah:

Do you think it's hard to stay positive? In that moment, though, when someone says you have a brain tumour, do you think that that kind of moment is the moment when you go, I don't want to be positive is the worst? My life is never going to be the same again? How can this happen to me?

Cameron:

Yeah. Because with me, I just felt like the room shrank. I felt like the rooms dark at all I can remember of when I got all the diagnosis. And it was, it was strange. I went home and I kind of dwelled on it and I thought, right, that's the end of the see words, and what what point is me doing anything about it now because nothing new, there isn't a killer. But when I got traded, it was all my eyes to a completely different, you know, a different world living with cancer.

Sarah:

The sad truth is, is that for a lot of people, there isn't a cure or treatment. And that's one of the reasons why we do so much work and so much research. And and I guess it is about reducing that harm, making sure that not just about the cure, it's also about reducing the amount of harm that's done. But I think your point standoffs about Living Well, beyond the diagnosis, a really important thing? That's subjective, isn't it? Because even if you do, like you were saying sort of channels that you got one sided weakness and etc, doesn't mean you can't live well. It just means that that might look differently to how you would have considered looking well, maybe before your diagnosis, it's about kind of saying you can live well, it does mean letting go of part of your you know, an image of yourself

Cameron:

was this podcast is trying to get rid of any you know, things that we know are not true, or will put you at ease if we can by telling our stories by going through certain areas of specifics of what we've gone through. So you can relate and you can go actually could do something about this. Or Fair enough. I have to live with it. What he is a coping mechanism.

Sarah:

What were you gonna say Chandler Ross,

Chandos:

I was just gonna say yeah, like diagnosis means so many different things, so many different people like for the people living with the actual diagnosis themselves, and for their friends and their family and what it means to those random. And so I think it's just about that holistic approach to I think things like this, where it's people sharing their stories, and just looking at what it means to them might help other people to take that first step to say, You know what I need, I need the help to know that I haven't really thought like this, I haven't always felt so confident in my diagnosis, that is not a defining factor of everything I am, what everything I hope to be or achieve. But when I was definitely a kid, when I was in the midst of my operations, or going to have MRIs every other month, wherever I did feel like it was massive, it was the defining factor of who I was.

Sarah:

That's an interesting thing. And I think that's a really valid point that this doesn't define you. But when you're initially going through his diagnosis, treatment, it is defining you that's how people see it isn't is that they can't move beyond it. But you know, you guys are both and hopefully, like you said, like through this podcast, people can see that it doesn't need to define you, you can redefine yourself, that at the end of it doesn't have to be a lesser version of yourself. You can still be a completely full version of who you are

Cameron:

thing I took from that illness was when I was talking to my parents there said this is our new normal now. So this will be normal for us. So sometimes, if you accept it as your norm, it becomes a law Egypt move on with its normal paper medication regularly. It's normal to go and see have doctor's appointments, clinic appointments. You know, if you see it as a normal find it becomes less of a stress.

Sarah:

Absolutely. That's something we hope to explore. In the coming weeks and months of this podcast. we're hopefully going to be sharing stories from our community from you'll be hearing more from common chandus. Hopefully people will find this interesting. They'll find it helpful to be hearing other people's stories, we'll be sharing people's advice, how they've got through it, the things that the coping strategies and the way that they've been able to kind of navigate from diagnosis, treatments, side effects, how people actually go on to live with the diagnosis. So thank you guys. Thank you.

Cameron:

Thank you all for listening.

Sarah:

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 you leave us a review on iTunes or wherever you get your podcasts so we can reach more people and raise more awareness