A First Step Down a Long Road

Hello,

This is something I've been telling myself I'd do for a long time. I've been recommended it by a few people, doctors, friends, family, for different reasons at different times, but they've all resounded. What I've been experiencing in the past few years is something I should share: an experience that has changed my approach and understanding to life fundamentally, like I never thought possible. Three years and not so much longer ago I began a battle that made all those rugby games, fist fights and hard days of work feel like therapeutic relaxation. But fighting harder has done nothing but made me stronger so far, and that is the real point of this blog.

First though, for those who stumble upon here or who just don't know what's been going on, a brief summary of my medical story. A bit more than three years ago at a rugby practice, I caught a knee just right in my left temple. It wasn't very hard or anything, but it felt really strange and disorienting. Following that experience, two nights later, I was warming up for a B game against U de S, and suddenly out of nowhere I had my first ever seizure. That was an incredibly disorienting, confusing experience. I didn't even admit to myself what it was at the time, but instead shook it off and played through the first half of the game. They continued however, and began to stop me from attending school, and generally shaking me up. They got significantly worse when I drank as well (and I was a bit of a drinker). It took a long time to separate them from concussion symptoms, but after a couple weeks I flew home and went to the doctors. In the end, I was lucky that I had a medical family. My GP thought it was brain damage from concussions and didn't even intend any imaging. My Dad, however, owns a private MRI clinic and we scooted in there and got one done. That was where it really began. What was supposed to be a routine investigation of concussion impact turned into the discovery of a tumour. We didn't know at the time, but it's an Astrocytoma, and it was about the size of a golf ball, but shaped kind of like a globular figure eight. That sent the world into a spiral. Parents flying home from distant countries, mothers terrified and trying to look after me, but what I remember of my feeling was clear. I tried to confront the harsh truth of what I saw on that MRI as I was left to sit alone in the doctor's lab, as the stunned  neuroradiologists tried to piece together what they saw. As it was brought up on the screen I'd heard the "holy fuck" whisper from my mother, and seen the shock on their faces, and I knew  it wasn't good. That big lump in my brain looked to my eyes on that day like the face of death, a grim truth, inevitable for all, facing me in a more direct confrontational position. Sitting alone after that it felt clear what I had to do: embrace the harsh truth, and seek to seize the moment and live to the best of my ability the rest of my life, whether it be years, months, or weeks. While I struggled with that in the beginning, over time I've seized to that idea further and further, and nothing has helped me more. There were more medical challenges to come (surgery, epileptic stability, rebuilding myself after it all) but I will return to them later.

The message I hope to share over and above all else is that when facing the dark fears of life (death, disease, disability) hold to hope, hold to strength, and never give up your resolve. I've been walking around with a tumour in my brain for no one knows how long now, and the last three years I've been walking away from surgery, a brush with death, and a constant sense of the unknown. In that time I've learned many new things, worked my ass off across this country, earned my independence, and then in the end, returned to home.

And that's where this story shall begin: the realization of the need to return to medical care, to begin to confront this challenge more head on.

February. Near the end, I had a seizure. First time in ages for a daytime seizure, a minor one, but nonetheless a scary experience. An error in dosage? Then another. Another, another. They returned to me, I upped the dosage, they left, then they returned again. Something had changed.

April. I've finally been forced to stop working and admit to myself: this drug isn't going to conquer this. It's not the result of a mistake, things are changing. I'm late  for my MRI, I'm no longer epileptically stable, and it's time to walk back out onto that battlefield. On my way home I go...

The journey wasn't so bad, it was stressful flying my best friend and strongest ally in the cargo hold (Gotta love that Winston), but we both got home safe and sound. What came next though, was not so nice. We'd been thinking for years, telling ourselves, it wasn't growing. This MRI very solidly proved that wrong, and that it had been growing, slowly, all along. That combined with my epilepsy becoming unstable meant it was time for the next step of treatment. Now came the question: Chemotherapy or Radiation? Do I want to eat complex fancy poison for a year, or get my brain precisely nuked? Choosing the chemo was surprisingly easy. The radiation treatment will, if I have to use it, destroy my speech center inevitably. So, if it comes to that point I will be truly disabled, unable to communicate, and I'm far more scare of disability than death or pain... So chemo began.

That was 6 months ago. In that time I learned a lot about chemo, cancer,  and medicine. First, and foremost: CHEMO IS NOT AS SHITTY (ALWAYS) AS I EXPECTED! That is something I want to say and then prove, a message for anyone else entering that battle. I think if I'd spoke to someone whose experience of chemo compared with mine prior to beginning it, I would have felt a lot better from the beginning, much less fear and anxiety, and I actually would have cared for myself better by staying more active, more focused, and more positive. It tooks months of pushing against limits, finding a balance, and more than anything, finding that pulling back and disengaging from the parts of life I find meaningful, is far worse for my health than the physical toll of engaging an effort. In these past 5 months I have caught 75+ sharks, cut down a few cords of wood, broken in a quad, snorkelled and collected a meal of scallops, bought a house and 22 acres, surveyed it and begun developing it, and am now going further and further with this all the time.

That is the main story I'm going to tell. That will be the real point of this blog. Sharing the experience as it was, and as it is now. I will try to combine writing about my days, my new home, my life and my experience, sharing pictures and videos as much as I can, with retrospective stories about how I came here, what it's been like, and what it's meant to me.