Why am I the one who gets to stay?

Posted on December 13, 2025 by freestateofjen

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:

My cancer scar has been hidden for 20 years. I’d never even seen it myself until I had my hair cut into a mohawk the other day. I always thought it was a line, not a square.

I’m grateful I got to stay and I’m forever sorry and sad that others weren’t so lucky

Sucking really Sucks!

Posted on January 30, 2020 by freestateofjen

I had my first ever tap dancing lesson yesterday. I was really excited about it because it’s something I’ve always wanted to do and I had new shoes, so of course, that in itself is very exciting and I was dying to try them out:

I was disappointed with the first lesson and I had to fight hard not to get pissed off at myself (I couldn’t follow what everyone else was doing), at the teacher (she didn’t explain things very well [at all really] to begin with) and at the other people in the group (they’d all been dancing together for more than a year and all pretty much ignored me). To be really honest, it was actually hard not to cry because I felt so stupid and like I didn’t belong. The whole entire lesson the teacher and the other ladies talked about their kids or the kids they were teaching (some of them must have been teachers) and because I don’t have kids (or a job) it was like I wasn’t even there because there was no way for me to participate in the conversation. At one point I almost said, “Oh, yeah, my friend’s daughter does that too.” But I stopped myself because it would have drawn attention to how strange it was to invoke a friend’s child when they were all talking about their own.

When I felt like I wanted to cry, I said to myself, “no, fuck you. I’m doing this. It doesn’t matter about any of that other shit. I’m doing it.” This is the same inner mongrel that rises up and gets me through stuff when it’s hard. I wanted to play the brain injury card in my mind. It’s story I tell myself about why it’s hard for me to learn new stuff: I have a brain injury and that’s why I can’t get pattern-based activities (like dancing), but this time, I tried something new and told myself that there would be no brain injury card and that I would act like a “normal” person and just learn without telling myself little stories about why things are difficult. I also made a promise that I wouldn’t reveal to the teacher or the class that I had a brain injury. It’s certainly a fact that I have a brain injury and as a result, face challenges that non-brain injured people don’t, but revealing that I’m brain injured has never helped me in the past, so I decided that it’s pointless revealing that aspect of my life to anyone anymore.

I guess every approach to learning something new is going to have its limitations. If I learn at home on my own, I’m limited because it takes a long time to work out how to do stuff, and even then, I don’t know if I’m doing it right. If I learn in a group, especially a group that’s already formed, like the tap dancing group, it’s hard to fit in because groups have a dynamic and once a group is formed, it’s difficult for it to absorb new members, especially if the common ground is something that is not shared by the new member (in this case it seemed to be kids).

After feeling like I stuck out like a sore thumb in the dance class I got to feel like I was on display as I walked back to my car. A group of about 12 bearded, black t-shirted, rum can toting dudes were hanging out in front of a house across the street from where I’d parked. All of them leaning on cars, they stopped chatting and stared right at me, one guy elbowing the nearest bloke and pointing at me with his bearded chin. I got in the car, gave them a huge smile and waved at them as I drove off. None of them waved back. I went and got a pizza and ate the whole thing without feeling one shred of guilt because when you burn a bazillion calories everyday you can pretty much eat whatever the hell you like and still have legs for days.

It’s really very hard to suck at stuff, like so hard. I never really considered how shitty it might make me feel when I decided to commit to a year of sucking. I just told myself a little story of how it’s going to be awesome to learn all this new stuff, and oh, imagine all the new and wonderful friends I will make! Happy days afoot.

The way to manage this is to keep returning to things I know I’m good at or at least I’m comfortable with because to suck 100% of the time, would just, well, you know, suck! I’m 100% in control of my own body and I feel good about that and happy about all the work I’ve done and still do to make sure that I’m mentally and physcially fit and healthy: counting calories, running, cycling, walking, swimming, skipping, hard style dance, hiking, reading, writing, cooking and just generally being creative. This is what some of that looks like:

A day out of my calorie book. I aim for 1700 calories a day, so this one is a bit over at 1935, but I allow myself this as it’s still in deficit (anything below 2000).

The blackboard where I track my weight lifting sessions. I don’t like weightlifting, but I do it because I like the results, and I’m also comfortable with it. If I didn’t record it on this blackboard, I’d never have kept at it. I rub it off everytime it fills up (like now) and start again with heavier weights. To keep the hatred at bay I never try to change the sets and reps. It’s always two sets, one of six reps and the second of four reps. The abs along the bottom have two sets of ten rep each, so 60 reps in total for each session, plus a one minute plank -ugh 😦

One way I keep my brain healthy: reading and writing. I know I’m good at these things because I’ve been doing them since I was about 3 or 4 years old.

So, in the face of sucking I look at what I’ve been able to achieve so far in my life and use that as a way to get through things when they seem hard. Recording everything I do is a great way to track my progress. Sometimes it feels like progress isn’t happening, but when everything is recorded, you can see that you’re getting somewhere and it means you’re less likely to give up, especially when stuff is new and you feel like you suck because new things are nearly always HARD, and just because something is hard doesn’t mean it’s going to be hard forever.

Sucking is finite: Unleash your inner mongrel

Graffiti

Posted on January 6, 2020 by freestateofjen

Today was my first attempt at graffiti drawing and lettering. Graffiti is one of the things I want to learn, not because I want to deface public property, but because I’d never done it before and I thought it would be interesting to pursue; it is.

Man, I had no idea of the history of graffiti! It’s so cool and there’s so much information on it. Graffiti Diplomacy and Graffiti Knowhow were really good websites. The first one with lots of practical lessons and the second with lot of info about the culture of being a graffiti artist. I totally love it when I get to learn something absolutely brand new. It feels like I’ve discovered buried treasure. For example, I learnt about mops, which are a certain type of pen/marker used by graffiti artists. That’s a much more exciting use of the word usually preserved for describing a boring household item that is used to drag a ratty wet end across a dirty floor. By the way – I hate mopping. It makes me sad.

I spent around three hours today researching and giving actual graffiti a go. I would like to learn how to do Wildstyle, which is a kind of font. This is what I came up with today, which I did freehand, following the methods on the websites I mentioned:

I think I did better at this than I did with knife throwing. This probably comes down to graffiti being a form of writing, which I am quite familiar with having been able to write since I was a little kid. Plus, I’ve kept at writing,whereas with the knives, the only thing I’ve ever thrown at a target is a few darts. I gave up on that when I was a kid after being yelled at endlessly by an impatient father who expected me to be an expert the first time I tried something.There’s a hilarious video here of an angry, impatient dad. Mine was about this level, minus the eff word plus religious blasphemy.

I felt like I had level of pre-existing mastery over the graffiti, which was absent during the knife throwing. The knife throwing took more brain power and a level of perseverance that the graffiti was void of, and as a result I was able to enjoy the graffiti more. That doesn’t mean I’m giving up on the knives, just that I suck more at them than I do at the graffiti and that’s ok, because that’s what beginners do; they suck at stuff.

Imagine how much room you’ve got to grow