Beyond Brain Tumours

Redefining life after: A way forward through change, adversity and suffering | Part 1

• Brain Tumour Foundation of Canada • Episode 14

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In this heartfelt conversation, Matthew shares his journey as a brain tumour survivor and the profound ways in which it challenged his identify, routines, and mental health as a young adult. He talks about paving a way forward, sharing the question that helped anchor him through his most difficult moments: “What can I do today, right now, in this moment?” 

While adversity might look different for everyone, the path through it is built one step at a time, through resilience and courage. Matthew’s story reminds us that there is hope, even in the toughest of times. 

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SPEAKER_01:

Welcome to Beyond Brain Tumors, a podcast of inspiration, hope, and support for the brain tumor community. I'm your host, Ben Seawald, Support Services Specialist at Brain Tumor Foundation of Canada. In our 14th episode, I'm so lucky to be joined by two-time cancer survivor Matthew McKinnon, originally from Surrey, BC, and now living in Ottawa, Ontario. Matthew is a passionate and authentic professional speaker who shares lessons from his own brain tumor diagnosis when he was 16 years old, a yolk sac tumor of the pineal region. Two brain surgeries, six rounds of chemo, and thirty sessions of radiation over eight months can seem impossible at the age of seventeen until you have no other choice. He was a member of the Brain Tumor Foundation of Canada's pediatric support program, Brainwave, was the recipient of a 2015 BTFC Youth Education Award, has presented a TED Talk, and has been the keynote speaker for numerous conferences and events. He learned that even in the toughest times, there is always a way forward. Join me and Matthew as he inspires others to embrace suffering and to confront their own difficulties with eyes wide open and to truly live in the moment. Hello, Matthew.

SPEAKER_00:

Hey Ben, how are you doing?

SPEAKER_01:

Oh, I'm so good. Thank you so much for joining us, and it's great to have you on Beyond Brain Tumors.

SPEAKER_00:

It's wonderful to be here. Great to have a chance to chat and yeah, get to be a part of the podcast.

SPEAKER_01:

Yeah. Um, I uh I'm super thrilled to be able to amplify your story and message even further than uh all of the places that you're currently on. If you do a quick Google search on Matthew McKinnon, a lot of content comes up. So even though we know how your story has ended, I always like to start at the beginning. Can you tell me a little bit about being 16 years old, the symptoms you experienced, and how you ended up getting diagnosed?

SPEAKER_00:

Yeah, absolutely. Well, when I was 16, I was in grade 11 at the time. Um I don't know if I mentioned this before, but I'm actually the youngest of six kids uh back home in BC. Um, and at the time, again, doing kind of the normal things a 16-year-old boy does, not a lot of homework and a lot more video games, uh, playing soccer, playing football. And for myself, that moment, um I remember the moment perfectly when my my whole life turned upside down, you could say. Um it was during a spring football practice and I was going to catch the football and totally missed. Um, and it turned out that that was kind of the start of a long line of things that would lead to the eventual diagnosis. Uh, part of the problem with that catch was I was starting to experience double vision and ended up having um blurred vision as well as some pretty serious nausea. Um, and I remember my coach calling me over to see what was going on, and I explained that I'm having double vision, um, it's blurry, um, and he thought I might have a concussion. So he suggested I go see uh my family doctor, I go see a chiropractor. And following those visits, uh, there were a few things that would point to the eventual diagnosis, which were you know, anti-nause medication that were only given to cancer patients to help with the nausea, and the chiropractor who could tell that the fluid wasn't flowing properly necessarily in my head, uh, which turns out was actually caused by that brain tumor slamming shut one of the ventricles in my brain, which was causing the swelling and causing my eye to turn in and causing a lot of the symptoms that I had at the time.

SPEAKER_01:

Wow. And at 16 years old, you're kind of invincible, right? You think you are. Yeah, yeah. So yeah, I'm sure a lot of those uh kind of uh touch points or um kind of things that they were discovering were a little bit concerning to you and your family.

SPEAKER_00:

Yeah, yeah, absolutely. I I remember um I was doing driving lessons at the time, and I had started to experience this vision change, and my brother thought I was trying to get out of my driving lesson so I could play more video games, but it turns out it was actually my eye was turning inwards because of it. But yeah, it's a pretty uh shocking experience when you realize you're not uh indestructible at such a young age.

SPEAKER_01:

Yeah. Um I think there's uh ultimately a freedom in that, but uh we'll we'll get to that maybe a little bit later in our conversation. Um, so can you outline for me a little bit about then kind of your treatment summary? So you got the the diagnosis, and then what was your life like after that?

SPEAKER_00:

Yeah, well, funny enough, it I got a diagnosis initially, which was incorrect. Um I went in for for a CT scan and they diagnosed me with sinusitis, sent me home with medication. I thought, great, I'm gonna be better. Um, over the weekend, had what we could only describe with seizures, and my parents knew, okay, there's there's something more. So I found myself in an ambulance to BC Chones Hospital where I had my first MRI. Um, and that night the the hospital sent that scan to the neurosurgeon, Dr. Cochran, who had actually already gone home for the evening. Right. So he had finished a full day of work, he was, you know, at home resting. He gets this email saying we have a scan of an MRI of a young boy here at children's. He checked it and he said, We need to perform emergency brain surgery tonight. Wow. And I didn't actually learn this until a couple years later when I was talking to a cousin of mine who's an MD. What the surgery was at that time on June 11th was a burrhole surgery, which is to relieve the pressure. And had it not been done when it was, it could have been fatal in a number of days or a number of weeks. Um, following that emergency brain surgery that evening, five days later, I had a second brain surgery to remove as much of the tumor as they could, and they managed to get about 50%, which was amazing. Um, unfortunately, that though, what that meant is that there was further treatment that needed to happen. So, over the next three weeks at Children's Hospital, um, the team was meeting to discuss what would my treatment plan consist of, which is amazing that so many people collaborate to figure out okay, what's the best for this unique case? I can't say enough good things about BC Children's um and the care that I received, but it turned out what my treatment would consist of was six rounds of chemotherapy and 30 sessions of radiation to my head and my spine. And this was yeah, this was in between my grade 11 and my grade 12 year. I had all these plans to be a civil engineer. I was gonna play football, my grade 12 year, soccer, you know, all these plans that quickly went out the window, so to speak.

SPEAKER_01:

Yeah. Well, and knowingly signing yourself up for that much kind of internal poison, right, is is a whole nother kind of trip. Um, I was so fortunate myself, I did not have to have any chemotherapy or radiation with my own brain tumor diagnosis. And so I kind of uh passed that whole scene right by. Um, but most of the community that has, it's just incredible to me that this is still the best solution we have for treatment uh of these brain tumors. So yeah, I'm I'm so uh impressed of your mindset and how you made it through.

SPEAKER_00:

Well, you know, it's funny, I often joke that it's a holy trinity of treatments when you get all three of them. Um, but my uncle, I'll never forget, he said, there's there's no better time to be diagnosed than today. In the the research that's happened, the the advancements in treatment plans. One of the things, though, that happened, or when I was at the the hospital, a social worker actually came into my room. And I mentioned I'm the youngest of six. I never had little siblings or anything like that. Um, but she explained to me that my treatment plan, the radiation that goes all through my spine, could actually leave me without the ability to have kids of my own. And you can imagine at 16, that's a pretty big pill to swallow and realizing, okay, this might not be something in my future. So this was a part of you know, learning what my treatment plan would consist of. And um to be honest, Ben, I I remember telling the nurses and the doctors, like, don't tell me what might happen. Don't tell me what might come tomorrow. I only have one question. What is it that I need to do today? You know, so often when we're going through circumstances and situations, and this is for me how I face it in that moment, was okay, what is it I can do in this moment right now? You know, I can't control the outcome of my treatment. I can't control, you know, whatever happened to me yesterday. You know, the only thing I can actually make any difference in is this moment that I'm in now. So that was that was the approach that I took um without maybe even realizing it. I think there was a lot of grace uh in those experiences. Um, but it helped me get through those circumstances at the early and late stages of my treatment.

SPEAKER_01:

Yeah. Wow. I mean, just it's such an incredible, powerful place to operate from. Um, and I think that it just kind of puts you in the driver's seat and immediately identifies that like you are going to actively be a part of your healthcare treatment plan. Yeah. Yeah. I yeah, I it's funny. I always say with people in this community that kind of brain tumors are the club that nobody ever wants to be a part of. Um, but it it kind of really is an identifier, right? And so um let's chat a little bit about that kind of structure and identity um that having cancer gives to you, the kind of the identity of surviving cancer, of having that supportive healthcare team and that constant scheduling and appointments. All of those things I think get wrapped up and uh I think that, yeah, very clear identity and path forward. Um so yeah, can you talk to me a little bit about that?

SPEAKER_00:

Yeah, for sure. I mean, it's something that I often talk about when I share my story, whether it's at schools or businesses as a speaker. And it's it's tough, especially when you're diagnosed, and you may have experienced this yourself. We have an identity going into that experience before, right? I I was the video gamer, I was the soccer player, I was the football player, I was, you know, fill in anything uh X, Y, Z. But when you get diagnosed with cancer, all of that is kind of taken away from you. You know, all these things that we do can be a part of our identity, but the moment that you lose the thing that you can do or can't do it, you lose that identity. And for myself, it very quickly became the cancer patient. You know, I joke, I went into my diagnosis around 190 pounds uh with full head of hair, and I came out at 160 totally bald going into grade 12, and no one knew who I was other than the bald guy wearing a Letterman jacket. And um, it it quickly became who I was, you know, and it's it's a beautiful identity in the sense that you mentioned being a cancer survivor, you know, like there's this this real um beauty to to to being able to say that. Um, but for myself, it became so much who I was. You mentioned all the treatments, you mentioned the scheduling, the structure. When you lose that, that's really hard. You know, and for myself, just to kind of illustrate how much I kind of had it as my identity, when I would introduce myself, you know, I would say, Hey, my name's Matt. Do you want to feel the dent in my head? Because from that burrho surgery, no one told me I'd have this little dent following it. That was a bit of a surprise. And I joke with my nieces and nephews, it's Uncle Matthew's off switch. So when we're playing, um but when I lost that treatment, when I lost the constant follow-ups, when I lost, you know, the day-to-day rhythms of five days a week radiate uh radiation, you know, two different cycles of chemotherapy. Um I did lose who who I thought I was at that time. And you know, we we talk about you know the cancer battle, we talk about the the journey through cancer. Um and oftentimes that's maybe the hardest part. But that's not necessarily where that journey ends. You know, we we often think maybe after someone's cleared from their treatments, they're they're done with cancer, but that really is the beginning of a much longer road.

SPEAKER_01:

Yeah, completely. And also wrapping your head around what that new identity is for you, right? So kind of having being diagnosed with a brain tumor and then like that being your identity for maybe a a year or two while you're like up to your neck in it and always surrounded by it, um, is really tough to transition out of that and kind of transition into who you're going to become moving forward, right?

SPEAKER_00:

100%. Yeah, no, 100%. And I think that's that's the thing too, is the question of okay, what next? You know, what what now? You know, now that I find myself maybe on the other end of surgeries or chemo or radiation or whatever it is, um, what is it that I can can do moving forward and kind of find myself again in a way, right? Um and and for myself, I'll be honest with you, Ben. Um I was in grade 12. I finished my treatment halfway through the year, and I ended up experiencing some pretty serious struggles with depression. And I think it's a story a lot of us, whether you're you know fighting cancer or um or not, it's something a lot of people are facing right now is struggles with depression and anxiety. Um and it's it's a piece in my story I haven't shared too, too much about. Uh, not that I I don't want to, you know, it's something I'm um happy to say. I I've been able to come through the other side of as well. Um but when you lose your identity and you lose that structure, all of a sudden you lose stability in your life. And one of the big things that we can do to help with that is find new routines, find new structure. Um, you know, groups, uh, whether it's support groups or social clubs or different things that you can then look forward to in your day, um, you know, choosing to do that next right thing, whatever the circumstance is, um, can really make a difference in in your day-to-day. And I I remember um when I was going through that first depression, I was journaling. And something I would do is I would always finish it the same way as today was a good day, tomorrow's gonna be a good day, today's a good day, tomorrow's gonna be a good day. And whether I believed it or not, that was part of the mantra of getting through um each and every day and finishing my journal that way. And there was a gap there of about 10 days between I think it was like January and February, where I didn't do any entries, and all of a sudden on that other end of that 10 days, it was a different entry. It was a good day. It was actually a good day, and um it's amazing to see how those circumstances we can find ourselves going through it, and all of a sudden we're on that other side, we don't really realize how. When I was finishing my my radiation treatments, um it was kind of the start of that depression. And to be fair, radiation on your brain, it's gonna have some impacts. Um and my mom made a really funny sign. It was we had a we had a mantra that helped me get through it was motion changes emotion. Amazing motion, motion changes emotion, and she made this great count, great like 10-day countdown calendar, and she wrote at the top what she thought said motion changes emotion, but she misspelt it and it was motion changes emotion. She missed the O on the end, so it became a big laugh.

SPEAKER_01:

Yeah.

SPEAKER_00:

Um, but it's true, you know, when we start taking those steps through the adversity in our lives that we face, it can make a big, big difference.

SPEAKER_01:

Well, yeah, uh, I mean, absolutely. That was everything that I experienced and more. Um thank you, first of all, for uh sharing that um in such a authentic and accessible way. Um really means a lot as well. Like, I'm just kind of really hit by the fact that the the finding out your new identity can start like almost at a cellular level, right? With your brain creating new synapses and then like uh it's like incremental kind of changes and uh additions. Um it's so important. And so even like a daily affirmation and resetting that intention and kind of manifesting what your future is going to look like, those small habits in the moment can turn into kind of longer benefits and habits. And I really, really appreciate kind of your commitment to that process. And I mean, thanks for hanging on and sticking around. Yeah, I can honestly say that the world is much better having you in it. And so, yeah, um glad that you uh that you made it through. Well, thank you for sharing that, Matthew. I really appreciate it. Um I'll end part one there. Uh, and you can join us for part two of our conversation, Beyond Brain Tumors, with Matthew McKinnon from Ottawa, as we discuss more what Matthew discovered through his brain tumor experience, the benefits of facing adversity and hardship, and living in the moment. All to come in part two of my conversation with Matthew McKinnon on the Beyond Brain Tumors Podcast.