Together For Sharon Interview
Our founder Daniel Hight is interviewed by Dr. George Ackerman for Together For Sharon on how he navigates life with his cancer diagnosis.
More Than Our Story
Iain Ward
Iain Ward shares his journey, from his diagnosis of Stage 3 brain cancer at 31 to becoming ‘The King of Chemo’, dedicating his life to fundraising and breaking the world record for the most money raised for cancer research.
Highlights
I was 30 when I had my first scan. I was 31 when they discovered that it was cancerous, and that's kind of when things kicked off; I had my surgery (an awake craniotomy) in 2020.
On how long it took him to process his diagnosis:
A very short period of time. I saw the opportunity a lot sooner than I had time to dread the situation. So it was just like, "I'm focusing on this, and I just kind of went from there." It was the sort of thing where, as long as you're kept busy, it's hard to get sad, because you don't have time to process what's actually going on.
Depending on which of the doctors within the staff you speak to, some say it's a glioblastoma, and some say that it's an astrocytoma. Take your pick.
I'm really lucky. I've never had symptoms. The only thing that I've had [were] certain symptoms, but they seem to be more related to the actual surgery itself, rather than the brain tumor.
The most surprising part (of the awake craniotomy), and the thing that was the most painful, was how much my hips ended up cramping up. Because you've got to stay perfectly still... [After an hour] I was saying, "Hey, can I just shimmy my hip around a little bit just because it keeps cramping up?" I didn't particularly want to shift and have a scalpel go deeper into my noggin. But obviously in a lot of ways, that's the kind of surgeon that you want. You want the surgeon who's calm as a cucumber, like dealing with all this sort of stuff. Otherwise, their worry would pass on to you.
On his full recollection of the operation:
The testing that they were doing was all verbal. So, I had to be 'compos mentis' for that, so I didn't want to take any of the knock-out drugs, because (when you take something at that)... You might be slurring your words, which makes it less accurate to achieve what we're trying to do.
Chemotherapy, for me anyway, wasn't particularly heavy. I was running and cycling to my hospital, which is about seven miles away. I never got to the point where I was able to run there and then run back. It was always like, run there and then get the bus back.
The reason that I was going into the hospital was for radiotherapy, which is where they put your head in a kind of plastic cast and they shoot the laser through the side of your head.
I want to push this very hard... Take your medicine if it is sensible to do so.
I had one seizure when I was out running, and I said to myself, ‘Okay, you're feeling a bit dizzy at the moment. But, you know, try and push through this because this might be an ongoing issue that you're going to have to deal with.’ Then, the next thing I knew, I woke up and thankfully, I landed on grass on soft ground, rather than concrete. I was dealing with a paramedic, and I was like, "Okay, next time that happens, don't push through." And I never passed out again.
Going back to the holistic medications, often people on social media will recommend to me a very big array of different supplements: "Take turmeric, and black pepper, and soursop, and all sorts of stuff". I have no reason to not take them. They're not particularly expensive, and even if they're not something that is going to cure my cancer or keep my cancer at bay, they still have high levels of vitamins and whatnot... So why not?
[Post-operatively] I lost speech for a while, but it came back.
Sometimes I wonder if my memory used to be a lot sharper when I was younger, and I don't know whether it's just getting older in general, or if it is something that is related to the cancer treatment. But if it was significant, I would think that it's the brain cancer or the surgery, but it's not really significant enough for me to think that it couldn't just be that I'm getting older.
I want to break the world record for raising the most amount of money ever for running a marathon.
More importantly than breaking a world record... I want to be the first person ever to do it without asking for donations.
My whole policy, idea, or concept is to ask people to follow my channel. [If] the channel is really big and attractive for corporate advertisers, then the money from the advertising goes directly to charity. So, I'm not asking people to donate. I'm asking people to follow the accounts, and it's been working so far. And one of the main reasons why I want to do that is because it's a first.
I've worked at charities before, and I know that there's something called donation fatigue, ‘Hey, give a Euro, give it a Euro, give a Euro.’ Even though it's a small amount, it's kind of like, when is this going to end? When are you going to stop asking me for money? And the answer is never.
I thought, ‘This concept is never-ending because it's like, just keep following the channel.’
More people [who follow] the channel, the more donations go in. I'm not asking for more of a person once they follow the account; that's pretty much it. Commenting is very helpful because it attracts more people and helps the algorithm, but once you click that follow button, that's all you need to do. Quite literally, you are pressing a button to help raise money for cancer research.
It's quite literally pressing a button to cure cancer.
I didn't have a background in social media, but I would watch YouTube as much as the average person... I had a look at PewDiePie and Mr. Beast, and it was just a curiosity thing. I was like, "Oh, that's interesting. The more followers that they get, the more money comes in..." I almost thought I saw a self-powering mechanism.
I thought the start would have been the hardest part, where I had to convince people that if you press the button on your phone to follow my account, I'll get sponsors, and I'll give the sponsorship money to charity... I thought that once that happened, everybody would just pour all over the account, saying, ‘This is just a button to cure cancer.’ It didn't [happen]. Getting sponsors and getting the followers, I wouldn't say it's like pulling teeth, but it’s very hard.
[I now have] around 20 sponsors [who] have participated in different ways at different times throughout the last five years, and we've raised over half a million USD.
I've run 20 marathons to date.
Ever since I started this, I just haven't had the time to dwell on the unpleasantness of having cancer. Even though every day, it's there. I don't think a day would go by that I haven't read the word cancer, or written the word cancer, or said the word cancer. But in a lot of ways, it's almost that, I'm not actually thinking about the tumor in my brain that's growing and trying to kill me. It's more about this goal that's directly related to that thing. So while I'm absolutely hyper-focused on my own cancer, I'm also kind of blinkers on, 'head-in-the-sand'. "Fucking kill me later. I'll deal with that later".
I said, "I'm the King of Chemo," and one of [my friends] responded, "That's a good name. That's a decent username, you might use that."
[My] next, very large event will be doing a live marathon (on a treadmill) streamed on Twitch while playing video games, and that's going to be really tricky, seeing how the video game is Warzone; so, a lot of first-person perspective. The hardest part will be (not) slipping off the sides. That's going to be on the 23rd of July. That’s [also] the five-year mark of me getting past my five-year estimated life expectancy.
I'm (also) aiming to break a charity world record in August, which is the longest charity livestream. That's based on time rather than the amount of money raised during that period, and that's going to be 32 days nonstop. A third of the time will be me in bed asleep, but there will be moderators to try to communicate with the audience, to keep them somewhat entertained during that time.
If you're listening to this podcast and you're thinking, "I want to help the most, to increase his chances of breaking this world record, and having the most money come in to charity," YouTube and Twitch would be the most valuable ones... Instagram would come in after that, and the same goes for TikTok.
Everybody is unique in how they're able to handle different situations. Some people need hugs and kisses, some people need something to do. I'm one of the people who it helped a huge amount to have something to do. I didn't have time to think about what was going through my head.
I think it’s down to not assuming that someone who is suffering from something requires you to talk about the problem often. They just need to have you around them to treat them as a normal person, to treat them as you did prior.
Treat a person like they are still a person, like they can still function, and make fun of them. Don't be fake kind to them. If they have that sort of sense of humor where they appreciate being made fun of, you know that's in their culture, don't not do that because they are now suffering from something. Keep doing exactly what you previously did in your friendship and treat them normally, because otherwise, if you don't, whatever problem they're suffering from is now their life.
The King of Chemo
At 31, I was diagnosed with stage 3 brain cancer. With 5 years left, I was given, I’m spending that time raising money for cancer research.
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Daniel
Daniel is an extremely curious person, a wealth of random knowledge and facts. Extremely passionate about a vast array of interests ranging from health to history, science to athletics, everything culinary and the list goes on. Trust us, you would want to be on his team for Trivial Pursuit.
Daniel is also years into his battle with brain cancer. He experienced a seizure while on a Zoom call at work in late 2020 and quite literally, his life changed within minutes. After his operation he started to talk about his story but had always known it was more than just him. From then, More Than Our Story became a PROJECT that has evolved into the starting point it is today.
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