The King of Chemo: the luckiest unlucky man

I was first diagnosed with brain cancer a little around four years ago. Now coming up to four years. And prior to that, they had had a scan on me, a pretty much a random scan. And in a very lucky and unlucky way, they were able to see the tumour.

I've done several medical trials before, sometimes they deliberately do medical trials on people who are, who are sick to see the certain medications work. But for me, it was always like, we need healthy young guys or healthy young people, whatever the category particularly was. And so they went in, they were like, okay, cool. We've just got to make sure, certainly, that you are healthy and that you're fit to be the sort of the the control. If you understand the processes of, scientific research, you need to be a control element in this. And so, they went and they tested and they scanned my head, and then they said, you have, a brain tumor in here. It looks like it's benign, but you have to get this, checked out. You have to get this known. And then, of course, they asked afterwards, like, have you had any headaches? Have you been like, you know, dizziness, any, poor ways of articulating your your words, anything. And I'm saying absolutely no symptoms whatsoever. And then so when I went in for my second scan and I spoke to my, the brain surgeon about it, he was saying, like, you know, now, Ian, we've just done a second scan and it does look cancerous. And that is bad news. But I can't stress it. I know this is not the right time to tell you this, but you have no idea how lucky you are, to have caught this without symptoms because, brain cancer, a lot of young people, the survival rate is quite low with it. And so the fact that I was able to catch it, not before it had developed from like stage one to stage two to stage three, because it was stage three when they were able to see it, but before it started affecting my ability to do anything. And so, yes, I'm the luckiest unlucky man in the world.

I always like to use the metaphor that your brain is much like, like a room in a house with different things within the room. And so quite a lot of your brain is actually space, but, your brain can actually move that into different rooms in the house, so you can actually convert, you know, your, your sitting room into a sitting room with a kitchen. And so what they do is they go in and they just try to remove the space as much as possible without damaging the stuff that's practical, like the bed, the chair, the couch, the sofa, things that humans use. And so the way they do that is they prod around and they have just like, as far as I know, it's just sort of like a pencil. And so they poke and then because it was on the, the left side of my brain because I'm right handed, which is really interesting, I think that that it makes such an effect on how your brain works. my right temporal, my left temporal lobe, because I'm right handed, is the area of speech. So when they were poking around, they were simply asking basic questions like we were playing an incredibly boring version of articulate, where they would have a photo of a cat and a dog on thing, and they would say, what's this? And it would simply look for me, slowing down like I just did there, where I would be like, a cat. And they would look for areas where I would be pausing and not getting. Quickly to just say, that's a dog, that's a cat, that's a bear, that's a pole, that's a whatever. From that, they were able to be like, okay, this is functional tissue. We won't remove that. Let's move around somewhere else. 

This is not functional tissue. We can remove this. And so they removed the space, not the, utensils, not the, appliances. Then what happens afterwards is actually more interesting as your body, as your brain heals. It has something called plasticity. The younger you are, the more of an effect this can have. so that was one of the things that they were saying when they're talking about you have five years to live, but that's an average. We don't have 30 year olds in. the younger you are, the more your brain is able to repair. And so what my brain might have done, we don't know. We won't know until, like, there's a there's a second surgery if that happens at all. my brain might have moved all of the pieces in my left temporal lobe that are associated, associated with them, speaking and articulating into a completely different section. So if the tumor is in the same location as it was beforehand and we're going in for a second surgery, they might remove a larger portion of the tumor and absolutely nothing associated. It might have something to do with my speech. They might. My brain might have moved completely into a different, lobe. And so the second surgery might even be more effective than the, the first one. I had I had a very small, social media account based on, just playing video games. And, that was because over Covid, we we just had all this free time and we had this idea of starting something like this up anyway, because me and, my housemate at the time, we, we both really like playing video games. So we were like, ah, this is this can be a bit of a waste of time. Let's see if we can turn this into something that's a bit positive, a bit creative. And then so I already had the, the, the concept of right. Well, if I'm going to continue doing this thing, I need to address the elephant in the room, because people are going to be able to see the side of my head. People are going to be able to see the scar for for the first couple of months, we don't know how much radiotherapy is going to affect my hair. So like there might be no ability to cover it up. So we have to mention this. So the idea where it was like, ah, yes, I'll do something for, for charity that was already sort of in my mind. 

So in my mind, I was like, right, you have a window where you have this title, but you don't have the negative things associated with this title of being having someone with cancer. So you could take advantage of that. And that's I, that's me. I just saw that as an opportunity. I was like, you got to do this and you got to do it, right now. There's like, I didn't slip out. I didn't get away with it. and then, from that point, it was like, how about I use, this against itself, where I know I'm able to, like, walk around and I'm able to physically do things I might get tired from the chemotherapy that I've got coming up, but I'm still going to be able to do certain things. And, so it was like, I, I knew it kind of made a unique story. A good story requires, something to overcome and to something to, to get past. And it was like, right, you have that, but you kind of have a cheating version of it because you've brain cancer, and brain cancer doesn't affect the body or the nervous system until it. Those your. You're fine until it does. And then once it starts to really hit you. It hits you hard, and then you often die quite soon afterwards. So in my mind, I was like, right, you have a window where you have this title, but you don't have the negative things associated with this title of being having someone with cancer. So you could take advantage of that. And that's I, that's me. I just saw that as an opportunity. I was like, you got to do this and you got to do it, right now. I was just tinkering around with the, on the internet of, like, how much is the most money someone's ever raised for this? I had done a marathon before. I knew the association with running a marathon and how it's like, basically like a cake sale. it's it's just it's a gigantic charity event. And so that was the first thing that I went to, and I was like, okay, the world record for most money raise for, running a marathon is, 2.3 million, great British pounds. So that is a lot of money, but it is not an amount of money that, I think, is sort of out of my reach from someone who's starting from nothing and then, same sort of thing where I was like, okay, let's see, the marathon is great for normal people to, have a world record with, because you can just dress up as something silly and you can be as specific as you want. You could be like, I want to be the fastest person to run a marathon dressed as a remote control. It really doesn't matter. 

I've started a social media channel based around video games. So I looked up the fastest person dressed as a video game character, and it's just under the sub three-hour mark, which is very hard to do, but much like the millions earned, it's something that if one was to focus, it could be achieved. And so, yes, the first two marathons are two world records that I looked up. They were the first two that I chose to make my life goal about. Because this is such a unique thing to want to do. I knew that I had to do it in a unique way. And, particularly with how much Covid was affecting people's finances, I knew that if I was asking for donations, that it would have a start, but then it would hit a plateau, it would hit a wall, and then I wouldn't be able to push past it, and then the momentum would stop, and then I think it would fizzle away. 

And so what I thought of was, if I just ask people to follow the account and then, with the account getting large with the social media accounts getting large, I can then ask businesses to sponsor me. But I get the sponsorship money to go directly to the cancer, research charity as opposed to going to me. And so I thought, it doesn't matter what happens in the world in terms of finances, whether there's like, you know, everybody is absolutely like, the poorest we've been in a century, people will still be able to follow an account on social media. Whereas, if I had say, and I'm not using this as a comparison to be like, lung cancer has it easy. But if I say I had lung cancer and then I went through all my treatments and, it I had to lose a lung, but then I was in remission because they can't really determine remission from, brain cancer because they can't remove all the brain, tissue. It's just too difficult to do that. Whereas they can do that with lung cancer. They can get rid of it all. And then you can kind of say, like, I've been in remission. So I know I've dealt with cancer. It's in a past tense. And then you could sort of, I think you could, get into a relationship and someone could be like, yes, they dealt with something. They can't run anymore. They can't do marathons. But, like, you know, he's still going to be alive when he's 70, unless, you know, something else pops up. So I suppose that's my thing that I have to deal with in my mind.

It goes to that same sort of hopeful ethos of we like, we need to get together, we need to group together, and we need to fight this thing because I think people prefer the idea of fighting something because it's something that can be physically, done. It requires you to show up somewhere to have trained for this and be ready. Whereas the reality of it is to fight cancer is incredibly difficult to do because it's it's it's it's more of a passive thing. It's more of a metaphorical thing which people, are like. And I'm not saying like, I'm not included in this myself, but it's it's a far more difficult concept to battle against. I would imagine a lot of people can't even like it wouldn't be something that you would say about mental health as a as a comparison. You wouldn't hear people saying like, we got to fight mental health because it doesn't quite suit, because mental health, it's it's it's even more of a,  what's the word, a passive, thing. Whereas cancer in, in a way you can see it as a physical thing because there are physical ways to deal with this chemotherapy, which is a physical thing. There's more exercise. There's, you know, there's a slight more of a physical association. So that's why I focused on the, come to war with me, join me and whatnot.