brain cancer cure | Free State of Jen

I wondered this and I still wonder this.

It’s been 20 years since I was diagnosed with the terminal brain cancer, Glioblastoma multiforme (GBM).

[GBM]…is the most common and aggressive form of adult brain cancer. GBM kills approximately 1,900 people per year in Australia. Survival rates are very poor with a median survival of approximately 15 months. Meaningful advancements in patient treatment and survival have not changed for decades. (click here for source)

I still don’t know why I survived when everyone I met during treatment has long since passed away. Sometimes it’s hard to believe that this happened at all. People ask me what I did to cure myself, but I don’t have an answer for that because I didn’t do anything. It was just dumb bad luck that I got cancer in the first place and just dumb good luck that I managed to survive. That’s it. End of story. No magic, No special diet, No intervention from a deity. Just random chance. People wanting answers are never happy to hear this, but it’s all I’ve got.

Mike died. Mike got me a horse for free. I’ve still got that horse. I’ve had Shrek 20 years. I rode him in dressage competitions and on long trail rides. My young nephews rode him, the cool guy I’m married to rode him, and I let friends and visitors ride him too. He has always been quiet and tolerant of inexperienced riders. I’ve often thought he was more like a dog than a horse. He loves to lick and lean, but at 16hh he’s far too big and fat for leaning! I took Shrek to the beach, I rode him in the forestry. I bought a sulky and drove him in that. He continues to enrich my life in ways I could never have imagined, all because of Mike. Mike had a PhD and was passionate about the natural world. He was also a great advocate for those who didn’t have a voice loud enough to speak for themselves. He successfully campaigned to retain access for horseriders in state forests in Qld. He was a good man and he died in his 40’s.

Rohan died. I spent a fair bit of time with Rohan when I was having radiation and he was a great support to me. He’d kept a detailed diary of his cancer journey and let me read it. It even had really deatailed sketches of his brain and the location of his tumours (he had two). He was close to me in age and of all the poeple I met during treatment I felt the closest to him. He had fallen in love with a girl and never got to pursue a relationship with her because life got in the way and I always felt sad that he never really got to know what a relationship with a special person could feel like. He was a good man and he died in his 30’s.

Others died too and always I was left asking why I got to stay. I wondered if maybe I didn’t deserve it as much as someone like Mike, or someone like Rohan. I still find it hard to be truly free and am often concerned with making the absolute best use of my time. This is a paralysing way to live and it’s easy to end up doing nothing instead of being able to choose the absolute best thing at the time. What is “the absolute best” thing anyway? There is NO answer to that because it doesn’t exist.

My survival is a total miracle. That miracle and the loss of my friends put a lot of pressure on me to live the “right” kind of life so that I could justify my survival. The thing is, I still don’t really know what the fuck I’m meant to do. Is being an adventurer the right thing, is that enough? Should I try harder to become more focussed on career success? Am I meant to get a job and earn lots of money? Should I go back to uni to reinvent myself yet again? I really thought I’d have this figured out by now seeing that I’m almost 50 years old, but maybe none of us really know what the fuck we’re meant to do and maybe a lot of people are just doing whatever it is they’re doing because that’s what they have to do to get by.

A nasty little arsehole once said to me, “I don’t know what it is about you, but you follow trouble or trouble follows you.” I had probably overshared my cancer story with him mistaking him for someone of good character. Arseholes are often good at hiding their true selves. But, you know, he’s actually right because it’s a good and virtuous thing to have the kind of trouble I’ve had. This sort of trouble is the trouble that rains down on you when you’re engaging with the world in a meaningful way. It’s the trouble that follows you when shit outside of your control comes careening out of nowhere, like a cancer diagnosis. From living through this kind of trouble you get to learn about who you are and what you’re really made of. It means you get to live a life that matters. If I get lost, in more trouble, uncover monsters, stumble, fall, but get up and just keep going, then I’m doing better than all the little arseholes put together AND I get to honour the good people who didn’t get to stay.

Having GBM wasn’t easy and it still isn’t easy because it still impacts my life. I’ve done my very best to turn it into a springboard for awesomeness. Since I was diagnosed I’ve done these things and others:

I got smarter: I went back to uni and got a bunch of qualifications
I wrote a couple of books and lots of short stories.
I got commended in the National Literary Awards
I won some photography prizes
I started running and I still run, something I never believed I could do
I ran my own successful business
I rode a lot of miles on my horses and found amazing stuff in the bush
I did two brain related charity hikes on my own, clocking up 825 solo kilometres and spending over two months in remote locations just putting one foot after the other
I worked in many different types of jobs and landed back in the job where the whole thing kicked off: entomology
I started mountainbiking and to my surprise can actually ride like a total demon
I got married and am still married
I bought and sold houses, cars and other bits and pieces
I started sewing and opened up a shop on Etsy marketplace
I have travelled extensively on my own and with the cool guy I’m married to all over Australia and to other countries
I’ve read an uncountable number of books
I’ve seen an almost uncountable number of bands at concerts all over Australia
I lived through bushfires, droughts, a couple of floods, family tragedies and lot of shitty stuff
I paid off my HECS debts
I struggled and I recovered
I recognised my self worth
I became a better person

The line, “why am I the one who gets to stay?” is from a scene in Ripple. It inspired me to write this GBM anniversary post. The line, “…let your freak flag fly” in Dispatches from Elsewhere inspired me to do this: