At 20-years-old, I fell in love with a boy. Very early into our relationship we learned that his gorgeous mother had developed a tumour in her brain which, within only several months, would take her life. Prior to this experience the concept of death was relatively abstract to me. I’d lost pets, distant relatives and was a complete mess when Mufasa died in the Lion King (spoiler alert). At that age I’d never watched anyone deteriorate in front of my eyes, or held someone’s hand as they breathed the words, “hopefully tomorrow…” when praying for their own death. I’d never watched someone I love, completely tortured by helplessness for a dying parent, friend or child. These days however, I can’t say the same. I have been heavily exposed to loss and even had to process the concept of my own mortality several times throughout my 29 years. Even several months before my dad passed away he told me that I’d seen more death and illness than anyone he knew. So much so, that I labelled 2016 ‘The year of 1000 deaths!’ and was convinced that I’d somehow been cursed by an evil witch to turn everything I touched into dead. Worst. Superpower. EVER!
I’ve been through the stages of healing into a “survivor” and subsequently crumbling back into bitterness so many times that I don’t even know where I stand anymore. I drift somewhere between grief and growth with occasional drunken rage black-outs where I desperately want to stab someone in the eye with a fork. I don’t know much of anything, but one thing I have learned is that grief is not linear and reactions are so individual they often appear nonsensical or unrelated to “real life”. I think we have this image that when you go through something major that you will just wake up more highly evolved than you were before. But in fact it tends to be a more agonising, chipping away at your heart and soul until you either develop a thick skin to survive, or if you’re me, develop a pretty intense addiction problem and file life in the too-hard-basket of your brain for several years! However, at 20, I still had the blissful ignorance of youth on my side which made this primary experience with death extremely overwhelming and confronting.
Simultaneously, as I was learning of the fragility of life and the rapid transition from health to illness and illness to death; I began to develop quite sever, chronic and acute back pain. I’d been teaching yoga for a couple of years at this point and assumed I had contorted myself into a pretzel one too many times and badly pulled a muscle. But after months of crying in agony for my mumma and seeing every specialist under the sun, my GP decided it was time to investigate further and get some scans done. As I lay in the CT machine for the first time with an IV of dye being pumped into my arm, the lab technician leaned over me and delicately said, “Now, don’t panic but…” (always a great way to stop someone from panicking), “…there is a chemical in the dye that’s going to make you feel like you’ve wet yourself. You won’t, but you will reeeaaally feel like you have.” (Brain to self – “wot dis bitch say?!”). I’ll let you use your imagination for how that all played out. Fucking dye.
The pain was unbearable and had been going on for almost 6-months by the time I was finally sitting in front of a solemn-faced doctor. I had been through pretty much every possible scenario in my head, so I thought I was prepared for what he was about to tell me. I was just desperate for an answer by this stage. Unfortunately, that answer was cancer. Only months earlier we had buried my boyfriends’ mum and now here we were, staring down the barrel of the gun again.
My doctor talked at me as I entered that state people go to in movies when they receive bad news. You know the one; there’s that loud, high-pitched ringing in your ears, your sight fades into tunnel vision, your freezing but covered in sweat, it’s like there’s a bowling ball in my stomach and a desert in my mouth (okay, now I’m just quoting Tori Amos). From what I pieced together from subsequent conversations, I had an extremely rare form of spinal tumour. Seriously, trust me to just need to be different! Even with cancer I’m extra.
As a creative and arguably interesting woman it is so indescribably frustrating when something you literally have zero control over becomes the most fascinating thing about you. I mean really, if I’m going to be getting any attention at all it better be for my witty intellect… and dis sweet ass (obvs)! While I’m up here on my soap box, let’s look at the word “inspirational”. I always struggled with being called this during my cancer “journey” for lack of a better word (kindly punch me in the face with a thesaurus next time you see me). Of course it’s always nice to be described as inspirational, but it’s a strange compliment to receive for being sick. If it was for my writing or my music, or someone took one of my yoga classes and suddenly burst through this most basic evolutionary plane into enlightenment, then by all means! Feel encouraged to feed my ego with #inspo posts. But… I literally did nothing. In fact, I did less than nothing, I malfunctioned resulting in cancer. I wasn’t even strong enough to be a martyr about it! I complained about it…a lot. I was a massive jerk for years because I was in agony and I was scared. There was nothing inspiring about how I handled cancer.
So my super unique, inspirational tumour had eaten away an entire vertebra in my thoracic spine (T6 for any anatomy nerds out there), as well as a corresponding rib. I was told that the tumour was rapidly growing and had the consistency of jelly, which put me in a very dangerous position. As my surgeon so delicately put it, “if you can imagine your spine like a carrot… If something were to cause a sever enough jolt, like you have a fall or get into a car accident, your spine could quite easily snap in two as there’s nothing holding it together in the middle.”. Little did he know that I had a history of being the worlds shittest driver so this was all too real for me! (Cue jaw drop and audible blinking). Cheers for that super cute visual doc! Much love. Fortunately for me, I grew up with a father who was on the Asperger’s spectrum, meaning I wasn’t overly disgruntled by my surgeons’ surprising bedside manner and in fact, it reassured me somewhat. Surely someone with such awful people skills must be a genius…right? Well, he couldn’t in all good conscience have someone walking around with a carrot for a spine, so as soon as I got the news the tumour existed, I was scheduled in for surgery the very next day. That’s when I knew it was bad. They (my team of doctors who suddenly existed), wanted to rush me into a 9-hour surgery in less than 12-hours time, with one of the best spinal surgeons in the country. I was like the Beyoncé of cancer. Bow down bitches!
That evening my father received a call from yet anther member of my entourage… I mean medical team. They were worried about the surgery. No shit?! Apparently, because of the soft, jelly-like consistency of my tumour (I know, super ew), it was more than likely that no matter how well the surgery was performed that even a single cell left behind would result it the recurrence of the cancer and if/when that happened any subsequent surgery would be impossible due to the sever amount of metal and scar tissue my back would now contain. This was when I was told that if I did not have the tumour removed it would continue to grow, put pressure on my spinal cord and eventually paralyse me. However, in a fun turn of events, the surgery itself could also result in paralysis. FML.
They decided not to chop me open in a flurry the next morning and instead we had a chat to yet another super-important-doctor-man. This led to my inclusion in an 18-month clinical trial at the Peter Mac Cancer Clinic. The idea being that the trial drug would calcify my tumour making it hard and therefore simpler to remove. Easier to remove means less chance of cells left behind and a decrease in my chance of recurrence. These appointments were long, boring and both emotionally and physically painful. Going to a cancer clinic is, in a word, urrrghhh*hgh$s@g#*^k! There is nowhere in my life I have felt less like a person and more like a patient. Not even an important patient. You’re seen as a dying patient that has been given up on. I wasn’t even dying man! I was 21, with a bone tumour that could paralyse, but not kill me… therefore I was one of the lucky ones. Yeah, this place was grim.
Cancer patients can be real ball breakers. We can be really fucking demanding and why shouldn’t we be? We are all in pain, many of us dying or fighting not too and not to mention, we’re bloody terrified. Yet, in these settings we are so often overlooked or ignored by people who are overworked and underpaid. I get it. It must be necessary to detach to some degree if you are seeing the walking dead on the daily, and we are not generally coming into the clinic a ball of laughs! We are exhausted to the bone and tired of being poked and prodded within an inch of our lives, forced to give blood from veins that have been bled dry and arms that are painfully bruised. On top of that, there is an expectation of gratitude for the care we are receiving. Don’t get me wrong, I was treated by some wonderful practitioners and nurses, but a kind grin is limited in how much it can help when the majority of your sterile surroundings make you feel like a numbered petri dish in a science experiment. Which is essentially what I was as part of the trial.
I didn’t have traditional chemotherapy. Again, I was “lucky” because the chemo I was given wasn’t given intravenously. It was an extra special mix made just for me that they didn’t make until I’d arrived at the clinic. Sounds exciting but this just meant I was usually waiting at least 4-hours to be aggressively stabbed in the belly with a syringe and sent on my way. It was simple. It was sad. I was told there were no side effects. Hazzah! I later found out that this didn’t mean that there were technically no side effects, it actually meant that because it was a clinical trial, that the side effects were yet unknown. It would be several years before I stopped receiving letters about newly discovered issues caused by the drug. Here’s a cute example; they found if you received dental work while the drug remained in your system that your jaw bone was likely to rot away. Yum. Or how about when they told me that if I was to get pregnant during the trial that my baby would develop without bones. That’s right, just a ball of flesh and organs. True story.
During the 18-months I was on the drug trial I attended a kind of cult-like cancer healing retreat. Yeah, it was as fun as it sounds… Just me, a raw-vegan-sugar/gluten/caffine/happiness-free diet and 50 other desperate and dying cancer patients clinging onto a speck of hope. This was one of the strangest experiences of my life and naturally extremely confrontational (I now know what I would do if I had 3-months to live, so that’s…yeah). But in the midst of all the tragic stories, group fear, hours of meditation to reflect on said fear and depressingly tasteless food… I met Schmoomy.
The Schmoo was the most hilarious, incredibly insane, magnetic and vivacious girl I’ve ever had the honour of getting to know. We were the two youngest people attending Cult Cancer by at least 20-years and as such, we clung to each other for dear life. We ended up spending practically every day together for the next several years. She was the Kim to my Kanye, the Thelma to my Louise, The Schmoomy to my Schmoo-monkey! We were inseparable. She may have had an aggressive brain tumour that made her hallucinate small children and my spine was eating itself from the inside out, but together we laughed so hard our bellies hurt, smoked so much weed Snoop Dog (Lion?) would be jealous and generally just took on the mother fucking world!
I loved her like a sister from the second I met her but I knew I was on borrowed time. Everyone around her was living on hope but I’d seen this play out with my boyfriends’ mum. I knew how this story ended and it scared the shit out of me. But that little fucker was just so damn lovable that I decided whatever time I got to spend with her was a bloody gift that I wasn’t about to waste, and I’m so grateful I did, because without an ounce of exaggeration, she taught me how to love myself and changed my life forever. There are not enough words in the human language to adequately describe how important this girl was, and still is, to me. But I will do my very best to honour her memory in the next instalment.
To be continued…
In loving memory of Shmoomy & R.S.