Let's Talk About Brain Tumours

Episode 54 - Living with a rare brain tumour and Everest in the Alps

• Episode 54

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In this episode, we talk to Alex, Katie and Martin.  At 20 Alex was diagnosed with a rare paediatric brain tumour DLGNT with limited treatment options his mum Katie did her own research into how best to help Alex, finding help and support internationally.  In February 2024 Martin, along with 3 of his friends are taking on the Everest in the Alps challenge to raise 500,000 to go towards research into paediatric brain tumours.

You can follow Alex AKA Syren on Spotify here

Find out more about The Everest Centre here

Find out more about the Everest In The Alps Challenge Marting is doing here

You can donate using the links below

UK/Europe: https://www.justgiving.com/team/Syren 

 Canada: https://www.kindredfoundation.ca/syren

USA: www.pbtfus.org/syren

You can follow Team Syren on  Instagram @everestinthealpssyren 

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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 from The Brain Tumour Charity about what we're doing to halve the harm and double survival. Welcome to the podcast. In this episode, we're going to be talking to Alex, his mum Katie and his dad Martin, about how his diagnosis has culminated in Martin taking on the mighty Everest in the Alps challenge. So welcome to the podcast.

Alex Bernard-Bell:

Thank you. Thank you. It's great to be here.

Andy:

Hello Alex

Sarah:

Perhaps we can start with you. Alex, can you just tell us a little bit about yourself, about your diagnosis?

Alex Bernard-Bell:

Sure, I'm 22 years old now and I was diagnosed in 2021 with DLGNT, which is a very rare form of paediatric cancer. When I was diagnosed, it was something like only around 100 cases recorded at the time. So you know, it was quite a shock. But before I was diagnosed, I spent a long time suffering from migraines, which was probably the first sign that something was wrong. These migraines weren't just your normal headaches, they would last for hours and hours, sometimes whole days and pretty much no, no pain relief would relieve the pain. So yeah, these were the first kind of signs something was wrong. Then I spent quite a bit of time in hospital in Barcelona, and also here in London in Charing Cross. After these, some of these migraines, I'd have to go and just because there was just nothing anyone could do to stop the pain. So I'd be spending quite a bit of time in hospitals.

Sarah:

Did they scan you at all when you were going in? If you actually spending time in hospital for migraines? Did they scan you or anything at that point?

Alex Bernard-Bell:

Yeah, no, I would I be going for scans, quite frequently, MRIs, CTS, these kind of things they'd be, you know, they would they, they couldn't really understand at first what was wrong they

Andy:

Did the scans pick up anything?

Alex Bernard-Bell:

Initially no, because they did they did the MRIs without contrast that kind of highlights all of the the tumours that were basically there at that point. So to them, they were they were struggling to really understand what what the problem was and they kind of just blamed it on migraines, rather than the migraines being a symptom of something bigger so yeah, a lot of time was almost wasted.

Sarah:

How long did that go on for roughly?

Alex Bernard-Bell:

I mean, I was in and out quite a lot, probably, I mean, my memories, not the greatest so. But I think for like a year or so in and out quite a bit. Probably that I think the longest thing I had it in was just under a month, about three weeks, something like that and yeah, no, it was it just it became very frustrating and in a way quite unsatisfying, because there was never, you know, an answer was never reached. So, you know, you can't take any steps to recover your health if you if you had if you don't even know what you're up against. So this was a tough time. But then finally, they did manage to diagnose me with DLGNT just because they I was quite I was about what 20 years old at the time. So they would they didn't think it would be what it turned out to be because that was a paediatric cancer and, and so they just didn't even really, you know, think to check for that.

Andy:

I guess if it was very rare as well, that probably might be why didn't cross their minds.

Alex Bernard-Bell:

Yeah, definitely that as well. So, so yeah, it just took an awful long time in the end to finally get answers and be able to start treatment basically.

Sarah:

And what treatment have you had so far?

Alex Bernard-Bell:

Well, the first thing that I had was, I had a shunt, put in my, in my head that basically drains the liquid from my brain to my stomach through a wire without me needing to do it myself naturally because this was causing a lot of pressure in the head, hydrocephalus, I think that's what it's called and there was no way that the fluids were draining. So they put this in and that actually helped a lot with the migraines, you know, kind of ceased for a while after that. That's that was the first thing but that was even before the knew, they had diagnosed me and then I'm sure my mum is probably a lot better with all the names of the treatments and the drugs that I was taking. But for a long time, a lot of steroids also. now, this is the second chemotherapy that I'm on currently, this one is called tovorafenib. It's working pretty well, I think it had pretty good response globally, with all the other patients that are on it.

Sarah:

Am I right in saying that that is the drug that you're getting from abroad, is that?

Alex Bernard-Bell:

Yean that's the one, t's manufactured in the States, I believe.

Andy:

Alex if you had surgery at all, and also, if this doesn't sound a daft question from mself is it DLGNT, is that where was it? And how big was it? Was it is it more different sort of tumour?

Alex Bernard-Bell:

It's basically, I know the reason it was hard to find basically, is because it's not just one big tumour, or a couple of them. It's it's a lot of really very small ones Well, in my case, it was surrounding my brain and spine.

Andy:

Okay, so surgery wasn't an option.

Alex Bernard-Bell:

Yeah, no that it's impossible to remove, you know, hundreds of tiny tumours so that was out the question, but I've had a couple surgeries, you know, quite a few biopsies, I think, two brain biopsies, and then obviously the shunt put in, and then a spine, spinal biopsy. Yeah, that's, I think that's about it.

Sarah:

That's about it? That's quite, that's quite enough and you mentioned the fact that you're getting the drugs from abroad. Katie, do you want to tell us a little bit about that?

Katie Bernard:

Yeah, absolutely. So Alex's DLGNT, it means Diffuse Leptomeningeal Glioneuronal Tumours and as he says they're tiny tumours that are all around the brain and the spine in the meninges. So the first treatment Alex had was with a targeted treatment. So initially, because Alex is, as he mentioned, is an adult and he's being treated as an adult in Charing Cross and because it's very rare, the standard of care, well, there isn't really a standard of care for this. But what they suggested was that he had radiotherapy followed by feneral chemotherapy and we challenged this and said, you know, it was, was there any, were there any other opinions, and we went actually, to the children's hospitals to Great Ormond Street, to Toronto sick kids in Canada, and to Heidelberg, where they have a bit more expertise in these things and what we found very quickly is that the best thing to do is to avoid radiotherapy and to get more targeted treatments, that are treatments that target the actual mutation of the genes. But in order to do that, you need to have an analysis of that mutation to understand what exactly has gone wrong, so that you can use a drug that specifically targets it. In Alex's case, he has a BRAF Kiaa fusion. So there is a drug available called Trametinib and that's what Alexander was put on immediately and that worked for about a year and a half yeah, just over a year.

Andy:

And was that based in England?

Katie Bernard:

We go that in England. It wasn't available on the National Health, if we had to get it through our insurance. It then was given to another patient at the National Health on compassionate grounds. But I believe that it's no longer available on the National Health, which is very disappointing. Then, when Trametinib just stopped working we went to we've been following a biopharmaceutical company in America that produces this drug called Tovorafenib which actually is a BRAF inhibitor. The previous one was a MEK inhibitor so we've been following that for a while and and that's what we managed to get Alex on but

Andy:

Can I just ask, sorry, when you say when you say the the previous drug stop working, how do you actually kind of know it stopped working?

Katie Bernard:

So Alex has a series of MRI scans every three months and so you can pick it up on the imagery and sometimes the changes are very small and we have Charing Cross looking at this. But we also sent his images to Heidelberg, to have another set of eyes there, look at it and between the combination of doing this it really means that you're, you're detecting things early on, so the scans and the scrutiny of the scans, so we could see, we could see progression of the tumours over a period of time

Andy:

Is that stopping it growing or making it shrink?

Katie Bernard:

No It was Trametanib was shrinking it initially and it had a really good response immediately. You could see it clinically, it physically Alex looked different, Axel was able to do to do things much more easily than we had been. So that worked very well. But yes, it's eventually it stops working and then Totovorafenib has been a very has been very good, but we had to fight to get that drug and Alex is the I believe the only adult in Britain on this drug. We don't pay for it. It's not available on the National Health and the insurance companies can't even pay for it because it's a trial drug. So it's still being trialled. It's still before FDA approval and we're having it brought in on compassionate use for Alex.

Sarah:

So is Alex actually on a clinical trial, or?

Katie Bernard:

No, no, there was no clinical trial in Britain. Unfortunately, well, there is this drug, but it's in the children's hospitals. It's in Great Ormond Street and Newcastle children's, which is fantastic, but they only treat children up to the age of 18 and so, yes, so Alex wasn't able to get on that. So we went to Barcelona to try and put him to put him on this trial. But there were some complications there and then Alex fell quite sick this summer, and we had to come

Sarah:

And Alex, how are you coping on the drug? How are you back to the UK. So that didn't work. So the biopharmaceutical company, again, managed to get it into the UK on compassionate grounds for Alex. actually doing on it?

Alex Bernard-Bell:

It's not bad. It's pretty good. People have kind of a stereotypical idea of they have, you know, the word chemo or cancer, one on the treatment sound. things come to mind, just very harsh things and it's it's there are downside to of course, I feel very nauseous a lot of the time with problems eating. So gaining weight is probably one of the biggest struggles while on this. But honestly, apart from that, it really isn't. It's helped me a lot, I have more energy than I did before. Is it a tablet that you take It's six tablets every once a week, every week.

Sarah:

Is this like to control it rather than to cure?

Alex Bernard-Bell:

Well, I mean, there is no cure currently, for this type of cancer. So it's, I see more, at least as in just prolonging life, rather than ultimately curing the disease. It's yeah, just gives you an extension each time and it might stop working and then you just hope to God that you find something then that you can try and see if that works.

Andy:

Are you getting any, any support? Because mentally that sounds like a tough set of circumstances for you to deal with? Personally. Do you, Aae you getting any sort of mental health support or any, any people there that are just working with you?

Alex Bernard-Bell:

Yeah, I have a therapist that I see twice a week I really enjoy and they're very helpful. I also I write, I try and write down, you know, the experiences and not just medically but also emotionally, that really helps.

Sarah:

Is that like your music comes into, into play?

Alex Bernard-Bell:

A little bit yeah, it helps that also, as well, that's a little less less graphic. The writing is really for people who do you know, maybe are in the same situation and really do want to be able to relate, whereas the music is there also is just a side of people just want to have fun. So repeatedly saying, you know, I'm gonna die in five years, probably isn't the best for my career.

Andy:

Well you never know.

Alex Bernard-Bell:

But yeah, I've had good support for the mental health side of this because It's sometimes more scarring than the physical side.

Andy:

Well, that's why I asked because it's, I mean, I've I've not got anything as bad as you but people look at me. I'm six years now after surgery and they go oh, you look fine, you look healthy. And I'm like, well, on the outside yeah, but there's a raging battle still going on inside. I'm assuming you're fighting that on a daily basis because you do look fine, but I guess being told that doesn't really help much.

Alex Bernard-Bell:

No, yeah, no, I I understand that that makes sense. No, I think people should definitely seek support mentally, for instance, in situations like this, even in situations that aren't as extreme, I think it's still very necessary and helps a lot.

Sarah:

I can't imagine what it's like to, you know, have to live long term was something that has no known cure at this stage. And I would imagine that there are a lot of people listening to this, that's the reality for them as well and it's, it's something that you have to kind of find a way to live with it the same time, how do you how do you do that? And everyone's got their own way of doing it but yeah, it's it's a really tough challenge, isn't it?

Alex Bernard-Bell:

Definitely. But I think it's not it's, you know, things can go wrong very quickly. But I don't know, I think we're all a lot tougher than we think we are and I think most people could get through this, you know, it's just one day at a time, you have a good support system around you, people that care for you, then it really is, and you back yourself as well, which is I think most important. You do believe in yourself, that you can live an independent life and a healthy life, then I think most people would be like, Oh, wow, I can actually do this.

Sarah:

When you talk about support, but you've got your mum is in Canada, your dad is in Madrid at the moment, I believe. And you're in London, so we all kind of spread around so that's kind of tough, for you all I would imagine.

Alex Bernard-Bell:

Yeah, no, we see each other often but yeah, that's just, that's just how it goes these days. It's not really up to me.

Andy:

Does it help as well, Alex, knowing that you're potentially trialling a drug, that if it works and is seen as successful could help you know, countless other people, after you've proven that it works is that does that sort of play a part as well, in terms of making it feel like it's worthwhile doing?

Alex Bernard-Bell:

Yeah, no, I definitely feel a little bit like a lab rat, sometimes. I think, in the summer, when my first chemotherapy kind of stopped working, in a very short amount of time, might help declined quite rapidly and at that point, you really take whatever you can get, you know, it's not really a choice of or pick and choose is this one, do I like this one? Or, you know, if this is your life, like, you're just yeah beggars can't be choosers, I guess.

Sarah:

And you're very lucky that it sounds like your mum is really into spearheading research and looking into all the different options, because I think that's in and of itself, finding out those options when you're right in it. You weren't really unwell, I'm taking it that probably would not have been in your mind space then to start researching different.

Alex Bernard-Bell:

Oh absolutel not. I would. I would say that, you know, I wouldn't be here without both my mum and Martin that's for sure. I am pretty certain even with all the help from Charing Cross, and doctors, globally. oncologists, still, you have to the amount of work these two have put in is mind blowing. I don't know how to do it, I couldn't, but they have and yeah, it's and that's why I'm here today.

Sarah:

And Katie, can we come over to you to you because I know you have done been doing a lot of research and you've been in touch with lots of organisations and you really have found out everything there is to know about this, this disease and you're in contact with lots of people there on an international level, do you want to talk a bit about that.?

Katie Bernard:

Yeah sure. I mean, when when you're when you're told that your, your beautiful 20 year old son has an incurable brain cancer, and there's no treatment for it, and the prognosis is at the best five years. You have to fight, there's just no alternative and although you're reeling from the diagnosis at that point, and your life is literally spiralling what we did, is we went to the internet and thank God, there's so much out there on the internet, and I know you have to wade through it. But if you put in the time you can and I just started researching online, I found medical reports that I honestly I could probably understand one word in 20 as I as I read those medical reports, but I realised that there were people out there globally that were researching this. They were very small studies, I found out very quickly that there had only been 100 cases in medical history that had been noted. I'm sure there are many more people that have had this diagnosis, but it's gone unrecorded, or maybe undiagnosed completely. But 100 medical cases that had been noted, and this was across the world, and any research paper was looking at maybe one or two at the most cases of DLGNT. So not really a great representative sample. But with every research paper, there was somebody who'd researched it, and there's usually their email address on those research papers, and I would send them an email and I would tell them what was happening in our family and and how I'd read their paper and that I was asking, and I would ask questions, who do I need to contact? What should I be doing? Is this what what drugs do you use? And they responded, it was incredible. The response was fast and really useful information and what it did was it triangulated everything to a small number of people, experts who, well they were called experts, when you talk to them, they said, well, I'm not an expert on this. So fabulous people like Darren Hargrave at Great Ormond Street and Uri Tabori, and Cynthia Hawkins at Toronto Sick Kids and Frank Winkler and the rest of the teams in Heidelberg. These people gave us some hope, and what they all said together, and they talk together and Alex is treated by Matt Williams at Charing Cross and he's been fabulous, because what Matt has done is said, I don't know anything about this. But if you find out about it, and we have other experts involved, I'm happy to be guided and that's exactly what we've done and we turn Alex's treatment round on its head completely. So away from radiotherapy and general chemotherapy, towards targeted treatment, all with the, you know, the premise that Alex has to be looked after and Alex has to be his health has to be good, we can't be doing any sort of experimental stuff. We're not sitting on crystals or, you know, crossing our fingers and just hoping this is proper, you know, scientific research, but it's what it's doing is it's going into the expertise in the children's hospitals, because this, as we've said, is largely a paediatric cancer and the majority of people with this are around the age of 5,6,7. They're mainly boys, interestingly enough. So we are learning things from the research that's being done and of course, with children, you have a different approach, you don't necessarily want to radiate a child's brain because it does stop development of the brain. So they've been looking for different treatments in order to look after children properly and there's no reason that can't be applied to adult patients. So what what we've did was we found this group, it's sort of like an international multidisciplinary team that we've pulled together, and they've all been wonderful and given their advice,. It's very important to get the tumour genetically analysed, so that you can actually understand what type of mutation it is and that can then guide the targeted treatment, because these are very specific drugs for for specific mutations. So I encourage anybody to do that. But of course, that's very difficult. Alex, as he explains, has a diffuse brain cancer, so the tiny tumours all over the brain and spine and getting a sample of that, when you have a glioblastoma for example, you can operate take a big sample of it, and you know exactly what the genetic analysis is of it is. When you've got very small tumours, either you don't pick it up in the sample that you take, and that's a biopsy like, that's why Alex has had so many brain biopsy, first one didn't pick up any tumour samples, second one spinal biopsied, very dangerous to do, and picked up a small sample that could diagnose it as DLGNT and then he had to have a third biopsy in the brain across his forehead, which is why he's got a scar across his front of his head, which had enough tumour sample then to be able to say, actually, you know, this is DLGNT, but this is a BRAF Kiaa 1549 Fusion and with that information, we could then target his specific cancer.

Andy:

But just on that, I guess, if you're dealing you said this is mainly with children sort of five or six, that would be even harder, wouldn't it? Because there's less, less brain to work with.

Katie Bernard:

Yeah, absolutely. It's very difficult. But what we did find out where there is hope and I think this is why it's so important to communicate is that Memorial Sloan Kettering in New York does cerebral spinal fluid biopsies. This is starting, but it was starting two years ago and we were told well, it's very unlikely you're going to from a sample that that you're going to be able to get a proper diagnosis, but we'll run it anyway. So Alex had a liquid biopsy done by sending samples of his cerebral spinal fluid and some blood to New York to have it analysed. But at the same time, you underwent a biopsy, a physical biopsy, a tissue biopsy, in order to make sure that we needed to have the diagnosis for the proper diagnosis. So you could compare the

Andy:

You could compare the two sets.

Sarah:

You had to go to all that just to get a diagnosis.

Katie Bernard:

Yeah, but what what gives hope, though, is that, especially for young children, that these liquid biopsies, I think they'll they'll get better and better and if you can actually have a diagnosis through taking a sample of cerebral spinal fluid, which isn't pleasant, but it's better than, you know, the alternative brain and spinal biopsies so you know that that is available there.

Andy:

You talked about communicating, it sounds like you're becoming a world expert on this are you're going to be writing, I mean jokes aside are you gonna be writing a paper on this or trying to pull this together because it sounds like there's invaluable learning here for other people following on.

Katie Bernard:

So we are we are trying to do something with it. So what we did when we got Alex onto Trametinib, and we actually had a bit of a break from the emergencies of the situation, because, you know, when we're in the thick of it with Alex, we're trying to save Alex, and then all the learnings from that we want to share with everybody. So we set up a website, all about DLGNT, just so that when other people had that diagnosis, and the for the first time, and they did like me, and, you know, went into Google and tried to find out what's DLGNT, maybe they come across our website, and it would give them some information. So I put all the research papers we've gathered, and I continue to do that into there. So it's sort of a one stop reference shop for people and it also gives them contact with us, but also gives them contact with the Facebook group that we've got as well and we now have found 44 families across the world, who are part of that Facebook group who have a loved one with with DLGNT and I have to point out as well from this, that we we actually found more adults with DLGNT. So we have a lady in Australia, who's in her 50s, who has it and we have several in the United States who are in their 30s with it so the diagnosis of paediatric only is changing.

Andy:

Yeah is changing, I guess,

Sarah:

I also wonder too how many people don't get diagnosed, like you were saying how long it took Alex to get diagnosed and how difficult it was. I wonder how many people have migraines and all those kinds of things and because it is associated with being a paediatric brain tumour, how many adults it's missing?

Katie Bernard:

Yeah, I think in other parts of the world as well, if you can imagine they probably die of hydrocephalus before and they don't ever know that they had cancer brain cancer in the first place?

Sarah:

Yeah.

Katie Bernard:

I'm imagine we lose a lot of people that way so yes. DLGNT was only classified by the World Health Organisation as a former cancer in 2016. So this is extremely, it's seen as being rare, but it's very new and I think we'll find out a lot more about it with the more the research goes on,

Sarah:

And the research is actually where you've kind of come into this, isn't it? Because you've your own research that you've been doing has led you into contact with, like you said, other professionals, and you you've got contacts now with the Everett centre, don't you?

Katie Bernard:

That's right, so because of the multidisciplinary team of experts that we formed, we continue talking to them and we were saying, well, how do how do we ever change this situation for other people for ourselves? And they said, well, first of all, it's data. We don't have enough data to work with because it's a rare cancer. So we need to get the data for people living people with DLGNT. So that's, that's gathering it into a databank and we've been working with a big data bank in the United States who is the biggest data bank, and it only had one sample of DLGNT, they have millions of samples of other brain cancers. They're only there for brain cancer, tissue tissue and data, but they only had one of DLGNT and then of course, with working with the lot of these doctors, we talk to our researchers, they have their own research centres and of course, they're doing critical research and it generally falls under low grade gliomas. That's where the DLGNT comes in and there are two centres for that. One is in in Canada in Toronto Sick Kids and the other one is in Heidelberg, and it's called the Everest centre and the other centres run by David Jones, who I think is total rock star of, of research into into paediatric low grade gliomas and this Everest centre was actually set up thanks to The Brain Tumour Charity and, and Everest in the Alps challenge which Martin is taking on and the fantastic fundraising that Rob Ritchies did when he did the first Everest in the Alps challenge and what they do in the Everest Centre is they are doing research specifically into low grade gliomas, paediatric low grade gliomas, and and this will help to find better treatment, kinds of treatments, faster diagnosis, more awareness of what this is, and hopefully, finally, some sort of ability to cure this, we hope.

Sarah:

Absolutely and I think what you've said then is one about kindwe treatments is also really important because the treatment is brutal. I mean, I think Alex kind of played it down a little bit about how awful these treatments are. They're not pleasant to have and it's not pleasant to be going through this and it is about having kinder treatments and treatments can either prolong life, but also have a good quality of life as well because that is as important as kind of the length of life is the quality of the life that you

Katie Bernard:

Yeah, I think a lot a lot, Alex, forgets some lead. things because obviously he's at different points in this his memories been better or worse rather. So Trametinib the first drug he was on, gave him terrible skin problems, and had to be controlled by a lot of antibiotics, but very, you know, sort of sores all over his skin, and very painful and unpleasant for him. But Alex has also suffered when he was on Trametinib from seizures, I think this is another big part of having brain tumours, getting the seizures and trying to get his seizures under control is very difficult and at one point that almost took over in terms of what was worse, the cancer or the seizures for Alex, because we seem to have the cancer under control but then the seizures were just was so debilitating for him. I mean, and very dangerous, actually, as well, you know, he's a young man going around London, and suddenly, a seizure would happen on the tube or something and people would look at him like he was a drug addict, or some drunk or something slouched on the floor. He was even pulled out of an Uber once and left by the side of the road, because the driver didn't know what was happening. So these are these are the consequences so Alex does paint a not so horrific picture of it.

Sarah:

Like Alex says himself, he's just getting on with it, and you're stronger than you think you are. But it doesn't change the fact that it's not the normal experience of life that a 22 year old would be living so there is that Alex. Definitely, kudos to you for continuing to live a very independent life because that must bring with it all kinds of anxiety about having those experiences and then sort of thinking, well, I still got to get on the tube. I still got to get an Uber, I still got to live life.

Alex Bernard-Bell:

No, yeah I very much put well I mean, not just mine, but everyone involved, everyone's life on pause really, for quite a while, you know, there's stuff that I haven't done that I wanted to things I wanted to have accomplished by now that I was unable to work as this and it's, yeah, it's kind of like when you're inside, you know, as a six man ward, it's like, everything stops, except the outside the word just keeps keeps on going with or without you, shout out to U2 there, but yeah, just believe in yourself like I said before,

Andy:

Do you still have the seizures now just out of interest. Alex?

Alex Bernard-Bell:

The last one I had was June, it's been a while

Andy:

Wow, that's good.

Alex Bernard-Bell:

I cross my fingers that I never have another one of those again, because they are yeah pretty brutal.

Andy:

yeah.

Sarah:

Also, driving is such a huge thing, seizures mean, you can't drive. That independence, that it's been taken away, and you're reliant on everybody and public transport and all of those things, whereas everybody else is just jumping in their car and whizzing off here, there and everywhere.

Alex Bernard-Bell:

Yeah I mean, to be honest, I don't have a car or have plans of getting a car. I don't think I can drive for a while. So that's out of the picture anyway but yeah, just even simple things and also just confidence in yourself. you kno,w not needing to be always surrounded by people who, even though they're you know taking care of you and they help you. Especially if you're a little bit older, you really, really don't want that sometimes. You just want to get on with your your thing. So it's but it's good and bad though and like, you know, just like how mum is in Canada, Martin in Madrid, and I'm here you know, we're able now to get on with our lives like before.

Katie Bernard:

The only reason Martin's in Madrid is because he's on a business trip. It's not that he doesn't live with me he's normally in Canada.

Martin Bell:

I'm literally here for the week that's it.

Sarah:

Yeah technology's amazing that we're all in different places and can still come together to do this. But on that note, you are taking on the Everest in the Alps challenge.

Martin Bell:

Yeah I was voluntold by my beautiful son and wonderful wife and in the summer they voluntold me that this would be good for me and it would make me a better person. I can honestly say it's already done that to some degree. I have a long way to go and I realised that climbing a mountain is a huge undertaking and I also am quite humbled because I thought it's a dedication and it must be in some way similar to having cancer and it's not at all. It's it's absolutely a million miles from having cancer. It's, it's a million times easier to do this and yes, I do a lot of sport. Now, I probably should have done a lot of sports for many years and Alex is raising his eyebrows in agreement to this. But I realised that this is actually really good and really nice and actually a lot of fun and I'm doing this yes, for Alex and yes, for brain tumours, but I'm also getting an awful lot out of it myself. I think those are some of the realisations that I've had with with regards to doing the Everest in in the Alps challenge and I realised I've still got a heck of a long way to go. But I'm incredibly grateful to Alex for pushing me and Katie for being incredibly supportive force she is to all of this. I've said a number of times that she's like producer, director, media manager, all of these roles of Everest in the Alps team Syren.

Sarah:

Can you explain a little bit about what Everest in the Alps actually is?

Andy:

Yeah what is it?

Martin Bell:

So Everest in the Alps is four friends, four days, 8842 metres, climbing on mountain skis in the Alps, to the equivalent altitude of the Everest mountain, and then skiing down, which is the equivalent of three, back to back marathons, so it's quite a bit of sport,

Andy:

Are you actually on the skis when you're going up.?

Martin Bell:

Yeah, you're on skis and you have that they're called Mountain skis and and effectively you have skins which is a type of felt that you glue to the underside of the skis and allow you to go uphill whilst wearing skis and not slide down. When you get to the top, you take the skins off, then you ski down. Which is the skiing down bit is easy I'm, I'm okay, at skiing, that bit doesn't worry me very much. The walking up 8840 Whatever metres is a different kettle of fish. That's an awful lot of effort.

Andy:

And what sort of timeframe is that?

Martin Bell:

Over four days, so you do 2212 metres every day and we do it with other teams. But we will be a team of four people, me and three of my my best friends. They all are hugely supportive of Alex and what we've done, and they want to do their bit for brain tumour research and charities around the world, which is really nice and incredibly motivating to have them joining me on this and ultimately something that I hope Alex is proud, Katie is proud and Hannah is proud and that actually means a lot more than than anything else for me.

Sarah:

And in terms of doing the Everest in the Alps challenge the money that is being raised is gonna go to the Everest centre. Is that Is that right?

Martin Bell:

Well it's a little bit more complicated than that and Katie, will share a little bit more in a second, but we are quite an international family. One of the advantages of that is that actually, we feel one of the key enablers or unlocks to cancer and cancer, brain cancer in particular, is having an international approach to solving cancer. So if we do it just on one country, when there's only one or two cases per country, it's going to be incredibly difficult to find a solution fast. So we are very much believers of an international approach and a cooperation approach is required to find solutions to rare cancers and low grade gliomas and that's why we've actually pushed to have three charities covering almost four zones. So we actually we have one charity in the UK and Europe, which is a joint one which is with just giving, and that supports the Everest Centre and the Great Ormond Street Hospital and then we have one in Canada with the Kindred Foundation, which will be supporting Toronto Sick Kids and research in Canada and we have a third in the US with the paediatric brain tumour Foundation, which will support cooperations between Chicago Children's Hospital and Sick Kids in Canada. Katie, you're dying to add to what I've just said.

Katie Bernard:

No, I'm just saying we're sitting here on a brain tumour charity podcast and you're saying that contributions that you're going to JustGiving which is just a platform. So in Europe and and and the UK, we are we're working with The Brain Tumour Charity to fund the Everest centre.

Sarah:

We're more than open to Global and International fundraising because you're absolutely right, Martin, that the research and the treatmentsfor brain tumours so far behind and a lot of that is down to the researchers who say it's down to the numbers. It's very hard to fund research when numbers are so small and the only way to get those numbers up is to take a more global approach because we need the numbers, researchers need the numbers to actually study. So a global approach is 100% what ultimately is the best for the brain tumour community, the sooner we get cures, however, that comes about.

Andy:

Have you got a target amount you're aiming to raise, Martin?

Martin Bell:

We do, we're targeting in total, one and a half million is the target. It's enormous challenge.

Andy:

That's a massive yeah.

Martin Bell:

When you realise how much money is actually needed to move the needle, and to make a difference, it is huge and whilst it's very kind that people donate 10 pounds, or 50 pounds, or maybe even 100, the power of multiplicity is really what helps. When we get somebody to donate, and then convince 10 friends to also donate. That is hugely powerful 10 friends that we don't know that that are beyond our immediate network. That is when really you start having a real fundraising impact to get greater returns and ultimately allow us to invest more into research and more into creating a difference for cancers like the one that Alex has.

Katie Bernard:

I mean, I think one of the points is, if you think about it practically, for the Everest centre, just to have one researcher, to be able to look into DLGNT, for example, will cost about 80,000 pounds a year. That's just one person, let alone all of the equipment that might be needed for all of this and the lab time, etc. So, of course, this is going to cost money and as Martin says, it's a lot of money.

Sarah:

Yeah and it's so underfunded, that fundraising is the only way to get that money, we don't get big pots of money that go elsewhere because brain tumours are considered rare, it doesn't show the big funding. So we have to find other ways of doing that.

Katie Bernard:

It's rare, but then on the other hand, it's the largest killer, the cancer killer of of people under 40. So, you know, look at the economic impact of having your under 40s dying from brain cancer.

Sarah:

Absolutely and this is the big issue. Funding definitely needs to be increased massively so that more research can be done.

Martin Bell:

I mean, when when we found out the statistics that only 1% of all the money that goes into cancer actually goes into brain cancer. It's staggering and I realised that because a lot of money comes from people who are typically older, when they have money and they die, and they leave it in inheritance and endowments and so on, they donate money for cancer research. If you've had breast cancer, or testicular cancer or lung cancer, there's a whole lot of cancers which are older people cancers, typically, and I'm putting that in inverted commas. But paediatric brain tumours and and cancers like the one low grade gliomas, which tend to impact younger people and young teens like Alexander don't have those resources and therefore that money hasn't historically gone there and that's something that we need to try and do something about and we need to try to change that, if we can.

Sarah:

Absolutely. I couldn't agree with you more and yeah, it's things have to change. But progress is very slow, and things like this, it's why, why it's so important that people like you step up to the plate and, you know, take on such a mammoth challenge, not just in terms of Everest in the Alps, but in terms of the target you've set for yourself and in terms of the work, you know, that you've been doing, Katie of pulling all of these people together, all of those things are so necessary, because we just don't have that.

Katie Bernard:

Yeah, yeah.

Andy:

So we need to shout it from the mountaintops. But hopefully Martin will be in position to do that.

Martin Bell:

I'll be yodelling it When you actually doing your four days, Martin? So it's at the end of February so we still have some time to train which is just as well, because I still have a lot of training to go but I've been advertising to Alex and to Katie and to Hannah that I've already lost quite a lot of weight and got quite a bit fitter. But I have I think I was coming from a very low base as my wife reminds me on a regular basis

Sarah:

What exactly does the training can consist of, because I'm not even sure how you would even begin to train for something like that.

Martin Bell:

So there's two elements one is strength and the others endurance as I've been explained to me by the Everest in the Alps, personal trainer that we have assigned. The strength bit only comes from actually climbing stuff so I have to do a bunch of in mountain climbing of altitude. So I'll be doing for the next couple months about 1000 metres a day of vertical climb and the other is endurance, which I've been doing recently, which is about, I'm currently running about 10k every day and I have to ramp that up slowly to 15 and then ultimately 20. So I've got a ways to go,

Sarah:

Wow and we'll list them in the show notes as well but if people want to a find Alex's music, you know where he can, where people can find that and also, where people can get in touch with you guys to donate and find out more about you and what you're doing. Alex do you want to go first?

Alex Bernard-Bell:

Just look up Syren on any music platform that you are subscribed to. That spelt SYREN that's all you need to do

Sarah:

Perfect. Thanks, Alex and I don't know who wants to lead Katie or Martin?

Katie Bernard:

So for The Brain Tumour Charity, we have a Everest in the Alps Syren JustGiving page, as Martin mentioned before, and that can be found, I think, on The Brain Tumour Charity site as well. You can follow us as well on our Instagram and which is Everest in the Alps Syren on Instagram, and that has all the very entertaining videos from Martin and these three friends who have been different as they train and they're doing business trips all over the place. So you're getting stuff from Rio de Janeiro or Belgrade or Real Madrid so it's quite an international feel to it.

Sarah:

So are you going to be doing social media on the actual climb? Are going to be documenting your?

Martin Bell:

Oh, yeah, oh yeah

Katie Bernard:

Absolutely

Sarah:

Do they have internet that up far or is this going to be posted like?

Katie Bernard:

It's Switzerland of course they do

Sarah:

So no excuses, Martin.

Martin Bell:

No, none at all.

Sarah:

As we're closing up, have you got anything that you'd like to say, or any kind of last words, anything you've forgotten?

Katie Bernard:

There was one thing that I would like to say I'd like to encourage any, any parent out there that or any person that has a brain tumour, never to be afraid to question. There's so much that isn't known about this. I know people are often afraid to to question or challenge their doctors and doctors can come across as sometimes as very knowledgeable about things. But there is no harm to saying what about this? I've read about this. I've talked to so and so and they've said this. Enquire, enquire, enquire, there's lots of information out there, people won't take offence, and if they do, they're the wrong people. So really, you've got to be an advocate for yourself and for your children.

Sarah:

I'm so glad you said that because it's one of the things that we hear all the time oh I couldn't say that's my doctor. Brain tumours are incredibly rare and they don't come across them all the time. So they can't know every single brain tumour, they haven't got time to spend researching constantly being on top of that and you're right, as a parent, that is your number one priority, your child is your number one priority, you will absolutely find the time and every waking moment will be spent Googling and finding information and contacting people. That's the time that your consultants don't have.

Katie Bernard:

Exactly.

Sarah:

Thank you very much, guys. It's been really, really great talking to you. Yeah cheers, guys. It's been fascinating. Yeah, really interesting to talk to you and can't wait to find out how you get on Martin. I'll be watching your social media to see to see how you get on.

Martin Bell:

And please follow our fundraising and disseminate them as much as you can. As I've said before, that multiplicity thing can make such a huge difference. We've seen that time and time again.

Katie Bernard:

Yeah, what's your mantra Martin?

Martin Bell:

Training never stops.

Andy:

Good luck to you, Alex, as well as you continue your treatment.

Alex Bernard-Bell:

Thank you. Thank you.

Sarah:

If you've enjoyed this episode, it would really help us if you can head on over to Apple podcast, Spotify, or wherever you get your podcasts and leave us a review, as it really helps podcasts like this to reach more people. Thank you