By Kieran McLeod
Hi, I’m Kieran McLeod. I was first diagnosed with brain
cancer in 2014 at the ripe old age of 13 with a tumour in the centre of my
brain after suffering a week of the worst headaches imaginable (for a close
idea, picture being within touching distance of the speakers at a techno
concert while also taking a claw hammer to the forehead). I described the
headaches at the time to my mum as feeling like “my brain is pushing against my
skull” (which we would later find out was a very accurate description).
Kieran being presented with his Cure Brain Cancer Foundation Ambassador Gold Pin by Board Director Beverley Trivett in June 2019.
The headaches started on the Monday as I started term 4 of year 8, and that Sunday I had an appointment with a doctor in Ipswich to try to get to the bottom of them. He made us an appointment for me to have my first ever MRI scan on Monday morning. By Monday afternoon we had the results from this scan, which found what they then called quite pleasantly a “mid brain growth”, this diagnosis was later switched to a “tectal plate glioma”, a form of brain tumour that occupies the mid-brain area. We were told to rush to hospital immediately, so my parents and I went home, packed some clothes, and that afternoon I was admitted to the Mater Private hospital in Brisbane, my home for the next 10 days.
I was to have my first surgery, an endoscopic third-ventriculostomy, to relieve the hydrocephalus (fluid build-up) caused by the tumour, which was the cause of my headaches. I think that first week in hospital went a lot easier for me than any subsequent visits, partly I think because the ETV surgery was just necessary, and partly because at that time I didn’t truly understand the gravity of my diagnosis, or the impact it was going to have on my life over the next 5 years. “It’s only a brain tumour”, I thought.
The surgery in 2014 was a success, and I was incredibly
fortunate to be able to pretty much ignore the fact that I had a bit of extra
brain, for the most part, over the next couple years. Except for the many, many
check-up MRIs that have been a constant throughout my teenage years, and my
tendency to make people feel very comfortable in conversation by making jokes about the situation. This “tumour humour” as I took to calling it, became a staple of my personality, both as a coping strategy and, I think, as a way of feeling in control of the disease.
Kieran with his Young Citizen of the Year Award in January 2019.
I felt guilty for a large portion of these years because of the relatively easy time I was having with the tumour. That guilt disappeared very quickly in 2017 after I had first been switched to 6 monthly MRIs rather than 3 monthly scans. In some cruel way of throwing my life into its next act, this MRI showed that the tumour had grown significantly, and the check-up 6 weeks after that showed the same. “Bugger”, I thought, though significantly less censored.
In December 2017 I declined a biopsy surgery, which my oncologist was pushing for to try and better understand the nature of my disease, after being told that it would likely cause me to lose the ability to retain new memories, which obviously wasn’t ideal. The same day I was scheduled to have that surgery I instead began the preparations for both radiation and chemo therapies, because one just wasn’t enough fun. I was told that day by the radiation oncologist that my tumour had “definitely gone high grade” and was given “2 to 5 years to live” even with the treatments, which is a hell of a thing to drop on a 16 year old who really just wanted to be healthy again.
Right, I thought, then that’s 2 to 5 years that I am not going out without a fight, and my parents agreed. For the few weeks before the surgery was scheduled I had started taking a cocktail of various supplements and drugs that had shown promise in clinical trials against brain tumours overseas. These were now coupled with 140mg of Temozolomide and having my head microwaved every weekday. I finished the treatments in August 2018 (radiation therapy finished after only 6 weeks, but chemo continued for longer), and the tumour was starting to shrink, (woo!). The tumour then developed cysts, which were going to be more troublesome (significantly less woo).
The cysts had grown significantly, and quickly. It was becoming clear to us that a surgical option was going to be my only option to finally rid myself of my extra bit of brain, but my main neurosurgeon in Brisbane was still not confident that he would be able to perform the surgery without significant side effects, due to the tumour’s unfortunate position in the middle of my head. After consulting with the doctors in Brisbane and still not being confident, we began to look for some second opinions.
Luckily, through our previous work for the Cure Brain Cancer Foundation with the organisation of Walk4BrainCancer Ipswich in 2018, we had heard of some other surgeons around Australia who we thought might be more confident with the removal. I found it nice on a personal level that, at least partially, it was my desire to help other people through fundraising for the foundation that ended up being what let me help myself. There’s a lesson in there for someone far smarter than I to decipher and share. We were eventually put in touch with a surgeon in Sydney who had been recommended to us by another doctor (like dominoes of helpfulness).
We headed down to Sydney, and for the first time ever, I was shown confidence by a surgeon, and told that, “I reckon I can get all of that.” I didn’t even think that would be possible when we were driving down, the tumour had always been called “inoperable”, I was expecting that he may have just been able to drain the cyst and maybe take a sample of tumour for a biopsy, but instead I was told that my life would once again change, and the tumour could be completely removed without damaging my memory circuits. The only side effects I was warned about in this initial meeting with the surgeon was possible left-sided weakness and/or blindness in my left peripheral vision. He gave me the option of having the surgery on either “next Wednesday or the Wednesday after”.
My parents and I left the office and had some time to
decide, and I chose to have the surgery the next Wednesday, February 13th,
2019. The surgery went for about 4 hours and was a complete success. I woke up
in the ICU very groggy, a bit sore, and very drugged, but I was still able to
move my left side, had no blindness, and more importantly, no more tumour. I
was told by my parents after I had recovered for a few hours that after I was
wheeled away to the theatre and taken beyond the point that they could tag
along, they wandered down to the cafe in the bottom floor of the hospital,
expecting to have a coffee and sit out the first part of what they thought
would be the at least 8 hour wait while I was in having my brain prodded. After
staying there for only 4 hours, and expecting a few more hours of worry, they
looked up to see the surgeon walking out towards them, smile on his face. “I got it all” he told them.
Kieran's Walk4BrainCancer Ipswich in 2018 which raised over $15,000.
Whenever I’m asked how I felt mentally after the surgery and not having the constant worries that come with tumour-ownership, I always tell them the same annoying answer, “it’s a lot off my mind.” I will still have MRIs every three months to check on the state of the tumour, and to check up that there are no further issues caused by the radiation therapy.
One of the things that helped get me through the 5 years I spent living with the tumour, and the thing that helped me keep my mental health at least partially intact despite being told that I was “inoperable” and being given essentially a use-by date of 23, was joking about it. I found that the old adage proves true, laughter is the best medicine, other than, well, medicine. I had to see a psychologist for a while in my last year of living with the disease after being given my use-by date because shockingly, that has an impact on a person’s mental health. Who’d have thunk it! But I kept joking, kept trying to spread that little bit of happiness. Because if this disease was going to rob me of my mental health, I couldn’t sit by and let other people lose theirs.
To any other sufferers of this disease who may be reading this, I have no real advice to give, other than to keep smiling, keep spreading even a little bit more brightness into the world, and never, ever let the disease take hope from you, because in the end that is the one thing we can always hold over the disease.
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