The Poetry of Survival or How Love Saved Me…
This is a story about survival. You’re used to hearing that from me though. You’re used to my stories of resilience and strength. This is a different story. This is about the poetry of death beckoning, of almost relenting. This is a story of suffering – endless fucking suffering. This is a story about the power of love to save a life, of persisting even when one has forgotten why one is persisting at all. It’s about resisting the call of the ending – self inflicted, tired of one unknown, contemplating the next unknown and the relief it might bring.
Imagine this: you are in emergency, everything in your body feels wrong, there are sharp pains that cause you to wail like the world is ending and you are the first to go. Three nurses work to attach a million cables to your head, heart and body. Your heart is hammering because you know something is really fucking wrong but the nurses wont tell you anything – they just keep saying “the doctors will be here soon, don’t worry, everything’s going to be okay”. You know they’re lying. Your mother calls your closest friends, your brother is holding your hand. A team of doctors turn up and the sombre look on their faces makes your feverish body cold. You know. Before they say it, you know.
“You’re dying. You have a perforated bowel from the stent you had put in and your body has been severely poisoned. There is an operation we can do, and we’re going to try our best but situations like these, in reality, don’t usually end well.”
My mother speaks.
“What are you saying? What are you saying? NO. I refuse to lose her. Candy you’re not going anywhere do you hear me? I’m coming after you if you give up!”
My friends have arrived and encircled my bed, some are crying, some are holding strong, all have their hands on me, somewhere, I can feel their love like an outpouring of spiritual water washing away my fear. I feel a certainty I wont die. Or I’m in shock. It’s not easy to hear that once I’m put under, I may never wake up.
“Mum, it’s okay. Look at me, it’s going to be okay.”
They need to operate immediately and start wheeling me away – my friends and family follow in a procession, my father barrelling down the Pacific Motorway trying to reach me, us. I speak to my best friend in New York on the phone and then I’m in the theatre and the medical team are at their battle stations. My body is a war site – pain stretches across most of me, I have no shame in crying. I tell the young Anaesthetist that I can’t die – I still have too much work to do. She holds my hand, tells me they’ll all do the best they can.
Never has a moment in my life been more surreal and yet, as much as I didn’t want to die, I felt oddly calm. Weirdly I knew I would emerge. My intuition which has always been strong was telling me I would pull through. I said a little prayer to my ancestors then they put the oxygen mask over my face, injected me with anaesthetic and after a few deep breaths, I was out.
?The operation took nearly four hours. During that time, my friends and family waited. I imagine this to have been an excruciatingly slow four hours for them and am thankful I was out cold and not waiting in that room to find out the fate of someone I loved. The surgeon and his team cut me breast bone to pubic open, opened me right up (that’s the third time I’ve been sliced that way, my scar like a zipper running the length of me, like I could be undone, or opened up again at any time) and washed out my body with nine litres of saline. They patched up my now sieve like bowel with wads of mesh but it was no longer functional and so they had to give me an irreversible stoma, then sewed me up again.
As an aside, it is hard for me to confess that last part – the stoma part. I have always been a little vain – which I think is a very human trait. Mostly we all want to feel good about ourselves, however we envisage beauty. I’ve never been conventionally (ie: mainstream media) beautiful, and I’ve never had a conventionally “beautiful” body but I’ve been pretty happy with myself for a long time and know I can rock a vintage shirt, bling and boots like nobodies business. I’ve also always been a very sexual being – my work speaks to that a lot so it’s no surprise, but it’s always made up a huge part of my identity. Being an extremely sexual, butch identifying queer has always given me the confidence to approach women. Suddenly, waking (and living) with a stoma, feels like most of that has been torn away from me. There are so many things to murder my mojo now – who will desire me? How can I expect anyone to be with me considering I’m not only sick with cancer but I now have this fucking bag? How can I do the things I most love? Swimming? Running? Trekking? Travelling? Fucking? I have been assured by every nurse and medico that people with stomas live “normal”, fulfilling lives and can do everything anyone else can do. But I am in deep mourning, grief a constant companion at what I have lost – what I feel I continue to lose: huge parts of myself, of my identity.
In any case, I awoke in ICU, a tube up my nose and down the back of my throat, hooked up to machines, groggy but alive. Mum, Dad and my brother by my side. By this time it was nearly 1am
and my friends had gone home after receiving the news I had survived the operation.
The next morning my oncologist and surgeon came to see me. They told me all was not safe yet. Though I’d made it through the first hurdle, the next two weeks were going to be touch and go. Though they had tried their hardest, there was no way they could be sure they’d managed to remove all the poison from my body and I would have to go on a very hard mix of antibiotics, intravenously, for at least a month, to try and ensure an infection didn’t take hold and kill me – essentially they were trying to avoid me going septic from which there is no return. To make matters worse, I’d had chemo only a few days before which meant my immune system was severely compromised and I was at even greater risk of infection.
That evening, in the middle of the night, I was woken by six nurses who burst into my ICU room and told me someone was in a critical condition and they needed the ICU bed. They surrounded my bed whilst I was still trying to gather myself, my head a groggy mess from the cocktail of pain killers and other drugs they had me on, when they grabbed my sheet and slid me over to another bed to be wheeled to the High Dependency Unit (HDU). Pain seared through my abdominal wound and I cried out, tears streaming, heart racing. This would become a semi-regular occurrence – being handled in ways that were rough, abrasive, uncaring and unthinking. For every amazing nurse that has cared for me, shown me compassion, shared stories, taken time to do things above and beyond their job just to ensure I’ve felt comfortable and safe, there have been nurses whose empathy has been lost, who are immune to other people’s pain – nurses who should not be nurses.
In any case, they may as well have wheeled me to hell. The HDU was a hub of suffering – many patients like me who required a huge amount of care and attention. Over worked nurses, most of whom seemed barely able to keep up with the demands and requirements of the patients, literally running between beds. Patients wailed, machines beeped incessantly, visitors were raucous and the general vibe of the place was one of awful chaos. Not a place for healing. In fact – I spent two weeks on that ward and never amassed more than one hours uninterrupted sleep for the duration. I needed rest, but I couldn’t because of the sheer amount of noise and the fact that I was on so many IV drips and drugs they had to wake me constantly to change them, inject me etc.
During those two weeks in the HDU, I was predominantly fighting for survival. My body was weak, my mind a fugue from all the drugs (roughly twenty being pumped into my body in any 24 hour period). The tube in my throat got so painful I couldn’t swallow without sharp shooting pains in my throat and I could barely speak. Eventually they agreed to remove it but then nausea set in and became ever present. On some days the it got so bad I was delirious, one of the wailing patients desperate for respite, any small reprieve from the constant sickness, vomiting, pain. At its worst, my mother called some of my closest friends to come and hold me, to be with me through it. I can’t recall most of that day, trapped as I was in a sort of Gehenna from which I wasn’t sure I’d emerge. This is the first time I remember wishing I had died on that operating table. To even type that out makes me feel incredibly vulnerable but it would be dishonest, remiss of me to deny that I wanted to be dead. I couldn’t see a way out of the suffering. If someone had offered me an out at that moment, I can’t say for certain I wouldn’t have taken it. But I have compassion for myself, I do not feel shame, because it is human to wish to escape pain and I couldn’t escape – I was attached to machines, with a body too weak to move and a brain too foggy to manage any sort of clear thoughts.
That night, after the worst day, the nausea finally broke. But so had I. After two weeks on the HDU ward, I could no longer take it. The lack of sleep, the noise, the abrasive nurses – all of it was driving me to the psychological point of no return, and I told my medical team that. Later that day, I was moved to a far away ward, quiet like a library and given my own huge room with windows. I could actually feel outside air on my face! I could actually sleep! The nurses on this ward were a dream – kind, gentle, understanding, patient, attentive. I felt a small part of my will return – and besides, I’d gotten through the most dangerous two weeks and I was a few days away from being released home! I was allowed to start eating tiny amounts of food again and though I still felt incredibly weak, the end was near and it wouldn’t be long before I was back with my dog Wombat in our little haven in Darlinghurst.
Then another disaster struck. My small bowel which had always been functional and was not operated on, simply stopped working. There was no rhyme or reason for it. It just stopped. The doctors were stumped – they couldn’t figure out why or how they might fix it. Again, I was poked, prodded, scanned, tested and they couldn’t find a reason for it. They tried every drug they knew of to try and stimulate it without success. The surgeon and my oncologist visited every day – I was and am lucky to have these two particular doctors as they are the most compassionate and invested doctors I’ve ever experienced. They were so committed to my recovery and incredibly distressed they couldn’t solve the problem.
Over the following weeks I became incredibly weak. Unable to eat they were bag feeding me intravenously, I had to have multiple blood transfusions and potassium and magnesium infusions, as well as multi vitamin injections. But I was wasting away. I was a proud 82kgs before I went into hospital but all my muscle mass and fat started to disappear. The worst part was that I was hungry – starving in fact. Yet if I so much as licked an ice block, I would vomit. My body simply couldn’t process food. Every day I would wake weak and hungry, despondent, hope ebbing away like low tide, a tide I couldn’t bear to ride anymore. There was no end point, no definitive moment were I was going to be well and get to leave this imprisonment. In fact, this was worse than prison – at least in prison I’d have a release date. Here, I was dying, shrivelling to nothing. The doctors explained they couldn’t bag feed me forever, I simply wouldn’t survive – if my small bowel didn’t magically start working soon, I would die.
?How can one articulate the sensation of constantly having to face one’s mortality – at 36 years of age? I can’t. Writer or not, poet or not, for me there are no words I can string together, no poetic and profound prose can truly convey the horror of facing death for weeks on end. Not just death – in the time I was in hospital I was stabbed with no less than 150 needles, so that my veins collapsed and I had to have two different types of implants put into my body so they could access deep veins (one has been removed, one will be permanent) which meant more incisions, more trauma, more pain. Additionally, because my body was filling with fluid so that I was carrying nearly 20 kilo’s of water, they had to put the tube back up my nose and down my throat. That pain got so bad I couldn’t speak at all – I had to communicate with a white board my brother bought me – I had lost another thing, my voice. To this day it has not recovered and I have appointments with speech therapists and throat specialists to see if it will go back to normal (I’m a couple octave’s higher than I once was). As you can imagine, this is another huge blow for someone whose voice is their world as artist, creator, performer.
After two weeks of starvation and knowing I was never going to get out of there if I didn’t take some action, I had my brilliant acupuncturist Fran come into the hospital to do a session for me. The next morning the doctors came and did their usual rounds, listening to my belly to check whether it was making any of the noises it was meant to make. For the first time in a fortnight he said he thought could hear the tinniest little sounds. I called Fran and she came back that day to do another session. Also, my father who is a homeopath had been researching the best remedy he might give me. Now a disclaimer: even though my father is a homeopath, I have never believed in it as a real form of healing or treatment for anything. I’m not adverse to alternative forms of healthcare, believe me, I’ve tried them all and many definitely work. But homeopathy has never been one for me and all the reading I’d done, all the scientific papers I’d perused stated there was absolutely no proof homeopathy worked beyond placebo – and for placebo you have to believe in the shit right?
The very next day I woke to a working small bowel. After more than two weeks of starving to death, the doctors unable to solve the issue and losing as much hope as I had, my body kicked into action. I refuse to believe it to be a coincidence. I can’t explain it except to say the acupuncture and the homeopathic remedy saved me. My entire medical team were ecstatic. Nurses came in to hug me. Of course my parents cried, my friends rejoiced and I saw an end to hospital on the horizon, finally.
During this entire time, I had not had the courage to look at myself in the mirror. Not really. I caught glimpses when having assisted showers (fucking humiliating), but didn’t allow my eyes to linger. A week later, I was finally allowed to leave. I had been wearing a hospital gown for five weeks. Finally, I put on a black t-shirt and black pants and went to the full length mirror in the bathroom. I took a deep breath and looked up. I did not see myself staring back at me. I saw someone skeletal, with sunken eyes, shoulders hunched, trauma etched into my pupils. And I cried. I cried and cried and cried. I had lost 17kgs in five weeks – and I had lost it fast. My skin was wrinkled and loose. I was…skinny. For the first time in my life, I was skinny and all I wanted was to be my chubby yet muscly 82kgs again with a straight back and sparkling eyes.
?The porter came to collect me in a wheelchair – I was literally too weak to walk to the exit – and he took me out to my mum’s waiting car. This was the first time I’d been outside in five weeks but all I could do was cry at all I had lost. It is this language of loss that consumed (consumes?) me when I should have and should be using the language of survival, of resilience, of what I have overcome to live in this world, on this plane – I still can’t help but wonder at what cost. What parts of me have I lost? What will I be able to return to? What is gone forever?
Throughout the entire time, due to my lack of strength and inability to communicate well, I didn’t allow many visitors, only a handful of friends and my immediate family. But all of them, each and every one are the reason I am still here. I could feel their love as an outpouring life force that kept me going when I simply had nothing left. Even an ex lover of mine, who I had barely had contact with for four years, flew into Sydney and stayed with me for the entirety of the ordeal. My best friend flew in from New York for a week just to hold me. People sprung into action in any way they could. They let me speak of the darkness, cry, rally against the injustice of it all. They let me just sit in silence. They held my hand as I suffered bouts of pain, vomiting, despondency. My parents and my brother were ever present and strong. I received more messages of support than I could count, more letters than I could open. I was surrounded by love and it’s what saved me.
I mean I had nothing left – not an ounce of energy or hope or will. These are all unknown feelings for me. Diagnosed three years ago with Ovarian Cancer, I have never, ever believed the disease would kill me – but this nearly did. The disastrous malpractice of a doctor who shouldn’t have given me a stent (not on my usual medical team, he was a “second opinion” as I was trying to avoid a stoma) nearly removed me from this earthly place and sent me on my way to the next.
Evidently, it’s not my time yet because my family and friends pulled me through with love. Anyone who knows my work knows my deepest belief is in the power of love – that we can not survive as a species unless we open up our hearts to all around us. Love increases our capacity for compassion, tolerance, forgiveness. Love is not easy – it’s hard work. Love is not passive – it must be fierce and ferocious to truly have the effect it should. I was loved so fiercely and ferociously, I survived. Some will say that was my doing and normally I would reply that certainly my strength and resilience had a big part in it. But this time, I’m not so sure. I felt so depleted that if I had not had that love around me, I may have just drifted into the darkness.
Additionally, a dear friend organised an online fundraiser where nearly $9000 was raised which is an incredible amount of money and source of great help for me. After a huge battle with Centrelink to get some sort of sickness benefit (it took nearly six weeks even though I had submitted everything they needed in my first meeting) my payments are a fortnightly $680. After rent that leaves me with $180 / fortnight to cover food, bills, medication and other health requirements. I’m not writing this to gain pity but rather to say this: if I didn’t have a massive, supportive community behind me, I would not survive financially. I’m currently unable to work – until at least next year – and to survive on that measly amount would be impossible. And yet people are forced to. Their only crime being sick. I didn’t choose to have Ovarian Cancer, it’s not a lifestyle disease, it’s genetic bad luck. To be further punished by living in one of the wealthiest societies in the world and only receiving a pittance? It’s nothing but further insult to injury. And the shame they make you feel!
In any case, I’m now back on chemo indefinitely, and recovery from my time in hospital is frustratingly slow. I am in my darkest time yet to be brutally honest with you all. It would be a lie to say I have overcome and am back on the horse. Rather, for the first time in my life I feel true and utter fear, desolation, exhaustion, frustration. The warrior in me is asleep and I’m having a hard time waking her. She’s asleep because she thrived on my work and I have no poetry left in me right now. One can not create when simply trying to survive. And I’m still just trying to survive. My body has changed so much that the idea of human touch is so far removed I simply can’t imagine having it again. The things I most love about life – human touch, physical activity, love between lovers, my work – all have been torn away from me.
How will I rise again? Tell me, how will I rise again when I can barely walk more than a few hundred metres without needing to sit down? When my purpose has all but disappeared. When my days are filled with a boredom and exhaustion that makes it hard to see a future where I’m back in my body, on my big butch motorbike, on a dancefloor, on a stage again sharing truth and hope and strength with you all?
I have made a decision to be fully vulnerable with you all, because deep down I know I will rise again. And though it will be slow, and painful, you will all be witness to this phoenix. And however long I’ve got left, I will be a symbol of strength. For now, I have to accept that the warrior rests.
For now, she rests.