31st July 2018
Simon, Andrew, James, John, Phillip, Thaddeus, Bartholomew, Thomas, James, Matthew, Simon,
Judas, Matthias. Could be the roll call on any morning at Eton.
Four fishermen, a tax collector, a zealot, a thief, a civil servant and four dole bludgers. This is the big twelve, the full monty, the last supper. This is the end times. Twelve cycles. Holy fuck.
I’m often told I’m in people’s prayers. I have lived on prayers, and possibly on a wing, for longer than you might think, or I care for. Some time ago, I found myself in Thailand, where a disproportionate amount of the world’s prayers originate. Prayer is a serious business there. Everywhere I went, people would place their hands together in a flat palm sandwich and bow to me. I would bow back in what was to become a common transaction. This was our ritual, an exchange of estimation, a swapsies of respect, a switcheroo of veneration. Thing is though, they didn’t do this for other westerners, and it became more and more noticeable as time went on. It was almost embarrassing. Almost. Eventually, after questioning a cigar-chomping monk who had taken up residence at a bar I was also propping up, the reason was explained. For Muslims, divinity was recognised in my beard. Back then, when it had some colour, it was red. It is said that the prophet had had a red beard and, once it’s pointed out to you, you start noticing how many older members of the Thai community had dyed their whiskers accordingly. Holy hair colour Batman. For the Buddhists, it was the hair on my head that elicited such reverence. My hair was maybe a month or so on from a close shave to the skin. Very fine hairs had begun sprouting from my scalp. Chomper explained that only Buddhist Monks shaved their heads in Thailand and that the level of growth on my noggin suggested that I had recently left the monastic life behind. The locals greeted me with the same reverie that they gave to the orange-robed monks who traveled in groups never less than four or five in number. They were treated to respectful bows, as was I, since it was presumed that I had spent the last few years in silent meditation. I was fragile. I was to be handled with care, a new life, naïve and unaccustomed to the ways to the ways of the word, emerging reborn. I didn’t have the right armour for the outside world. I was to be protected.
Truth be told, a shaved head doesn’t suit me, but at the time, I didn’t know what to do with my hair so it was either a skin or long locks. Knowing, or more accurately not knowing what to do with my hair has been a lifelong problem. As a kid, I wanted to be like everyone else and have the aggressive spikes that were so popular amongst wee men back then, but my soft boy curls and cows lick both conspired against me. I blame my curls for the way my life has panned out as much as anything else, they had me marked out early. Try as I might to tame their ways, no haircut ever seemed to suit me, and the annual school photos became a regular source of embarrassment and resentment. It looked like I had a nut-brown brown blancmange on my head, wobbling from side to side, threatening to jump from my head to my neighbours. It had a life of its own and no gel, paste or wax was ever going to influence it. It was both eccentric and feral, unable to even confine itself to just one idea of a mess. So, as I got older and entered my 20’s, I accepted it’s dual nature and vacillated between two polar opposite hairstyles. For a while I would grow my hair out and let the weight of it pull my afro curls straighter, and then, either when the mane became too unruly (or some girl broke my heart and make me want to present a sullen angry face to the world) I would shave it all off and start again. It was one extreme or the other. During the awkward growth period in-between where it blancmanged again I would just wear a woolen beanie. The old Army Surplus stores sold a style I liked, and so for a time, you would never see me without my headwear. These days I have a barber who is the first person to ever actually get a handle on my barnet and fashion it into something I’m actually happy with (Kudos to Johnny). I won’t let anyone else near it now. It’s getting long again and it’s probably time for another trim soon. I know because I’m wearing hats a lot just now. It probably doesn’t help that there’s an amazing oddball hat shop in Gordon, just up the road from our village. Last year I got a lovely olive green top hat in the style of a roguish Dickensian villain. Ever since I bought that hat I’ve developed a predilection for picking pocket watches. Watch out, it’s the Peelers!
They can’t touch me. I am protected. Everything that can harm me has been blasted repeatedly for six months now. The danger is surely dead? Chemo is so nearly over. Emerging back into the world, I rub my eyes, shielding them from the intensity of the winter sun. There are no street urchins, gin merchants, whores or handcarts, no flower sellers, no chim chiminey chimney sweeps. I can’t see anything. The daylight hurts my eyes. I’ve been in darkness too long. People are being very gentle with me, handling me with care, but my beard has long since faded from red to Just For Men™ Light Grey, whilst my hair has grown out and is even comb-able now. And yet, still, the quiet protection continues. Everywhere I go kid gloves handle me. It’s ok; I can walk on my own goddamnit. I’ve just forgotten how to do a few things in my solitude is all.
It’s true I have been a hermit. An Lhermitts, in fact. Lhermitt’s is a very rare consequence of the chemo, rare enough that despite flagging it up some weeks ago, I lacked the vocabulary to describe it in a way that brought it the attention it needed. I chose my words better this time. My Consultant congratulated me on a pretty accurate description of the symptoms. Textbook, phenomenal. The symptoms are a private magic show for one. When I bend my neck downwards, it sends an electric current through my feet. This is Lhermitts’ Phenomenon. I can amuse myself with it during long meetings at work, or to alleviate boredom on the train. It’s electrifying. What it means, unfortunately, is that my nervous system is struggling with the chemo. It doesn’t quite suggest spinal cortex injury but we’re getting closer than I’d like. It means that the nerves up and down my spine are hyperexcitable. I tell my Doctor that my nerves are pretty excited as it is. He laughs. I always joke when I’m feeling anxious. I’m going to spend the next few weeks wondering if the slight discomfort in my back is from sleeping in an awkward position or if it’s the onset of paralysis. I back up into my shell at the thought of it.
The upside of Hermit’s Phenomenon is that the Oxyplatin has been stopped completely now. The research suggests six cycles is all that’s required; my Doctors advocated a minimum of eight. I managed eight on full dosage, two more on eighty percent and now the last two without it. Continuing with it will have little to no effect on my cancer, and the risk of permanent nerve damage is too high now. The rest of the meds continue, but it means no more Phenergan, no more passing out, no more restless legs. It means being in the chemo chair for an hour instead of four. It means that starting now, my nervous system can start repairing itself. Hopefully, over the course of the next three to four months, the neuropathy will dissipate. I’ll be able to go into the fridge without wincing, hold a cold beer in my hand, go outside without feeling like I’m walking through cobwebs. Walk across a cold floor. Small ambitions. There are no guarantees in this game.
The world has moved on since I last visited it. Everything looks unfamiliar and complicated. I’ve forgotten how to do even the simplest tasks. I’m not sure I’m ready to come back. I’ve got enough complications to contend with as it is without all this new stuff. There’s already a DVT in my upper arm, fluid trapped in my lower arm, Hermitt’s Phenomenon, fatigue and ongoing neuropathy. The list goes on. Chemotherapy, stroke, healthcare, meds, anxiety, 80's movies, 80's music, Aussie Rules Football, Star Trek, Art, Netflix, Hair Metal, Classic Russian Realist Literature, anxiety, time travel, parenting, mental health, frightened rabbits, shoplifting, herd immunity, tribalism, Skean Dhu's, radiation therapy, designer hats, colonialism, tattoos, flying skulls, holidaying werewolves, the court of Louis XV, childhood trauma, art schools, art therapy, romantic opera, dodgy rumours, literary streets, weird instruments, Lithuanian organ makers, Misophonia, the end of the universe, an epidemic of madness. All this and more prevents me from leading a normal life. We’ve covered a lot of subjects over these past six months. What have they all got in common? Nothing. Not even cancer. It may surprise you but, for those of us in the chemo-hole, the world doesn’t revolve around our cancer.
When you get the diagnosis, it becomes you, or at least, that’s how others see you. You become it. I am cancer. You’re the guy at work with cancer. You’re someone’s partner, with cancer. Your kids are the kids of that guy, with cancer. You’re the start of a million stories that begin with, “I’ve got a friend with cancer…”. Even when this is all over, I’ll still be the guy who ‘used to have cancer’. I used to be the guy who had a stroke. I’ve evolved. Cancer might be the thing that defines every cancer patient, but as I’ve tried to demonstrate with this blog, it’s not our whole world. We still have thoughts that aren’t exclusively tied to our cancer. We need to have thoughts that aren’t tied to it. We would go mad otherwise. You might see us lost in thought, but we’re just as likely to be thinking about Russian realist literature, star trek plot holes and romantic operas rather than how close we are to death. We’re much more than cancer. We’re Cancer plus. Ironically, we don’t always want to talk about oncology reports, blood results and new side effects. This blog has been my way of controlling that discussion. Sure, ask how we are, we appreciate it, but let’s not dwell. It’s not everything. It’s not all I am. The fact is I can’t let it be all that I am.
I’ve been given a lot of books on cancer. I bought a fair few myself too. And yet, I’ve barely flicked through them. I don’t really want to know what they say. Maybe it’s a bit of denial, but I also need time away from cancer. A good book should be a holiday from yourself. Hopefully, this blog has been a bit of distraction for others in the same boat. I’m surviving all this as best I can. It doesn’t help me to read about what I should be eating when everything tastes awful. I’ll eat what I can just now, without worrying too much about the nutritional content. That can come later. My bitter taste buds have died, but I can tolerate sweet. I’m pilling on the inches thanks to mochas replacing lattes and coco pops replacing muesli, but right now, that’s the least of my worries. Sweating the small stuff doesn’t help when it comes to the big picture. Let me tell you what I mean. I follow a lot of health pages online. I often see people, perfectly healthy people, agonizing over where they will find micrograms of certain nutrients. Someone will make a suggestion, but it’s not good enough, there’s no guarantee that the nutrients aren’t lost in the husking/shelling process. They think it’s best to import direct. Others agree. It’ll cost a fortune, but it’ll be worth it! I read these things, and I reckon half the posters will be dead from strokes or cancers brought on by all the stress they’re subjecting themselves to. I’m not saying you shouldn’t strive to be healthy, of course not, we all should. There are obvious health risks like smoking and excessive drinking that we can all get behind the messaging, but don’t worry about every single. Little. Thing. The stress of it will send you to an early grave. Chim chiminey chim chiminey.
Take it from me, when you do get sick, and you will one day, nothing can stop that, you don’t need any more stress in your life. That green tea, pink salt or filtered water isn’t going to make you immortal. It isn’t going to stop Cancer. Cancer doesn’t care. Don’t waste every waking moment obsessing over illnesses you don’t have. Live. And live well. Don’t let it be all that you are. I can’t let it be all that I am. If you let it, cancer will take you hostage.
“What can we do to make you comfortable?” someone says.
I’m hungry, I think. “Maybe eat something?”
I’m told that I’ll have to stick to a liquid diet for a few days yet ‘til my strength returns and my stomach is working properly. There’s another person now, a young man. I didn’t notice the change over; so many people come and go. He’s attaching electrodes to my chest and suggesting some hot broth and maybe some jelly afterward. Maybe he’s a nurse? Fine I say, waving him away more dismissively than I intended. They’re just trying to help, the comers and the goers. It feels strange being amongst people again. I think they all want me to behave a certain way, but I’m not sure what way that is. Everything’s been turned around. Someone new is plumping my pillows even though I didn’t ask for it. Male, older. Serious. Not a nurse.
“The secret service will, of course, want to debrief you, but that can wait. And there will be Senate hearings, but it’s all just procedure”.
Everyone’s on my side they say. They say there’s nothing to worry about in a way that makes me certain there’s something to worry about.
“Oh, and there’s the press too”, Serious adds after a pause, almost forgetfully. They’ll do their best to keep me out of their glare until I’m ready. A statement has already been prepared; a tailor will come and see me later if I feel up to it. What that a question? Whilst he’s talking I’ve managed to swing my legs out of bed. The floor is colder than expected and I almost jump back in under the sheets. No, we’re going this way apparently, according to my legs. I take a side step, not sure where I’m going but wanting to find a way out. I’m crab walking, hoping no will notice. Serious doesn’t stop talking but shifts his stance ever so slightly; just enough to block my shuffling exit.
“There are good people working on this, they’ve got your back,” he says, ignoring my feeble attempt at escape. They’ll move me to an undisclosed location where I can stay until I feel ready to talk to the world. My family is already on their way there. Oh God. Will they even recognise me? How do I tell them I’m not the same person they last saw six months ago? I don’t even know who I am now? Maybe I should just spend some time on my own, travel again like I used to? I could go to Thailand. Before I get too far into this escape plan, a hand has appeared around the door, knocking on the inside.
Serious stands down. Colonel Trautman’s familiar face appears behind the hand. Sam.
“At ease soldier,” he says with a fatherly smile.
It finally dawns on me. I’m going home.
My nerves are shot, but I’m home. This is the end of chemo, but as anyone who has ever been here knows, it’s not the end. It’s not party time; there won’t be any champagne. It’s not all behind me. It never will be. Little did I know when I woke up on the 24th of November 2016 with a wonky arm that life would be so completely and utterly changed. It’s not going back to how it used to be. Sure, there is the short term: Flushing the port, blood tests, scripts, the DVT. Then there’s a CT in January, and a colonoscopy to look forward, probably in Feb. The port needs to be removed some time. Then there’s another routine check, every three years. But it’s all so much more than this. It’s not just the appointments and the change to routine or the change in lifestyle. The stroke left an indelible scar on my psyche. Cancer adds another. Several times a day I feel something, a twinge, hairs standing on end, a tightness somewhere. It’s always there. I ask myself several times a day if this is how it ends? It’s so exhausting. We have to make our peace. I have to learn how to live with two silent partners who follow me around everywhere, trying to kill me.
When do I get to say I’m in the clear? Today? In two weeks when the final cycle has run its course. In four months when the neuropathy should be subsiding. January? February? In three years time? It doesn’t end, and that’s ok. I’m changed and there is no going back to how it used to be. At least I get to live amongst people again. I made a list of things I wanted to do if I got through this but I’ll be honest, I probably won’t go see The Pyramids or learn another language. It’s all too much like hard work, and right now I just want to rest. Just being ordinary me again is enough. I might order a new suit in my preferred waist size as an incentive, but getting back into shape isn’t a new thing, it’s just getting back to where I was before all this. The only thing on the list I imagine I’ll achieve is getting stocioulsly drunk at a bar. It’s not much of an ambition, but there we are, it’s what I’m holding on to. If I fall over, prop me back up. Little ambitions. I wonder if the monks will come to witness the miraculous?
One of the reasons I’ve managed to keep going is the boundless supply of support I’ve received. To date, nearly 10,000 people have read my blogs. I don’t know who you are, but I appreciate everyone who has spent a little time here and particularly those who left messages, comments or shared my posts. I’ve had some extremely touching private messages from friends and strangers alike, and each one has meant the world. Knowing that people understand what’s going on with you makes it that bit easier. Being human is naturally lonely, but I’ve felt the presence of others around me and it’s been both necessary and welcome. I hope I’ve given you something back. So thank you for being a reader, thank you if you sent me a message, left a comment, shared a post, sent me a handwritten letter, baked some cookies, baked some ‘cookies’, babysat me, drove me to hospital, sent me some books, tolerated my occasional moments of bleakness, supported me at work, donated me some sick leave, said a kind word. You are all beautiful people.
The world feels incredibly fucked up at the moment. During this last cycle, there was a story of a Good Samaritan, Jemma (surname withheld) who called an ambulance for a homeless man. Ambulance Victoria then passed her details onto a debt-collecting agency to recoup the $900 bill. There’s a lot that went wrong there, from the breach of ethics in handing over details to a third party and the extraordinary high bill for ambulance call-outs, to the most obvious and pressing failure here which is the sheer lack of humanity in our health system. We’re numbers on a spreadsheet and unpaid invoices. We’re no longer human. No insurance? We can send you to jail or leave you to die? It could really depress you. And yet, what we need to note from this sorry tale, what we most need to shout from the rooftops, is that the world is full of good people who care about their fellow humans. So, to you all, I say, Swapsies?
We can be optimistic. There are so many beautiful people who can turn this ship around. We can make The World great again. So, the battle is not over. In many ways, it’s just beginning. I’m coming back to the fight. I’m trying a bandana around my head. I’m putting on my orange robes. I’m sharpening my claws. I’m finishing with this blog for now as I always said I would, but you’ll see me again, on the barricades.
As I walked up to the hospital today for the final cycle, I was reminded of something that happened on the day of my very first cycle. Bec had driven me in. We’d found a park a couple of blocks away. I was grateful for the two-block walk, I needed some time to get my head together. We walked in silence up Sturt Street holding hands. Ahead of us, a whole block away way was an elderly couple, standing at the pedestrian crossing at the Drummond Street North intersection, just before the Cancer Hospital. Even from our distance, I could see the crossing lights change from the red to green man, but the elderly couple didn’t move, they remained motionless, staring straight ahead. The lights to cross to the right then changed, but again they didn’t move. At this distance, I could hear the beeping tone of the crossing, but still, they didn’t move. We’d covered half the block before the lights across to the hospital changed again, and still, the old pair didn’t move. Another minute on and we had reached the crossing ourselves. One of us pressed the button. The ‘WAIT’ sign illuminated and the slow tock of the crossing let our ears know that we should stand back. And then it changed. Red to green, slow tock to hurried ticking. “Shall we cross?” I said, and all four of us crossed together, shuffling. The shadow of the hospital loomed over us. This is where chemo happens.
We took the lift together to the first floor, joined the queue to sign in and took our seats in the Consulting Suites waiting area. The old couple are called first, I’m not sure if it was him or her who is the patient. They stand and follow the Doctor in silence around the corner. I didn’t seem them again after that. Ten minutes later, it’s my turn. A man appeared in the waiting room and called my name. Male, older. Serious. Not a nurse. He wears the insignia of the crab on his arm.
The Doctor leads me down a length of corridor to his office at the far end; where he would prepare me and measure me up for my new shell. He showed me a pamphlet with a selection of crab colours to choose from. Monastery Orange or Prison Orange. I picked Monastery.
A nurse shaved my head in the military style as the Doctor carefully placed the plates of armoured chitin around me. I asked if it was really necessary to cut my hair so short. “You obviously don’t know much about crabs do you?” said the nurse. It was true, I didn’t. I decided to sit quietly after that. I sat passively, staring out the window as the bolts were locked into place with a powered drill. Thin black plumes of smoke spiral up into nebulous clouds that sit on the bands of sunlight filtering through the blinds. Somewhere out there, beyond the pane, past the sky, transcending the limiting blue of our planet, in the dark space beyond, legendary battles rage. Hercules is fighting The Hydra. The various heads of The Hydra snap and bite at each other as much as their enemy. Blood spills across the heavens. Hera is leaning on the ropes, watching the battle, bored with the stalemate. She’ll tip the scales. A giant crab is thrown into the ring to distract Hercules, but its intervention is short-lived. Hercules smashes the crab, driving his fist through its shell. He throws the carcass to the stars where it disintegrates into the planetary system of 55Canceri, an unremarkable collection of dense superearths and barren moons.
My world doesn’t revolve around cancer. It’s over six hundred light years away, too far for an orbit. I’m as much a stranger here as you are. Canceri drifts amongst dying stars, pulled apart by gas giants as it circumnavigates the galaxy. It’s lasted 5 billion years, not unsimilar in age to our own system, but none of its five planets are habitable. No one lives there. No one identifies as cancerous. It has no people to call it’s own. I won’t even enter its atmosphere. I float outside its limits in the dark, spinning in the silent void. I don’t spin to the pull of any celestial object, they’re all too far out. No, the Coriolis is the gentle pull of the universe itself, tucking itself in. The stars are all going out. It’s bliss.
I can feel a slight tug on my suit reeling me back in. The nurse has already finished, a pile of grey hair on the floor has replaced her. The last plate has been fitted into place. The Doctor has done a fine job. I’m back in the room just in time to see the antennae screwed into my scalp. I’m fully crustacean now. There’s a full-length mirror in the corner of the office. He leads me over to it. I’m a bit unsteady, but it’s the added weight more than the extra limbs that make me stumble. I suck in a deep breath, and somehow feel lighter. We cross the floor with me being partially supported, even though I feel like I’m floating now. The Doc is smiling at my shoulder as I inspect his handiwork through stalked lenses.
“You’ll get used to the pincers over time. Hand therapy can help you with any problems like doing up buttons or tying laces” he says.
I’m sure they will. It looks good, better than I expected, no creases at all. Good. The Doc clasps his hands together and bows a degree at the waist. I return the bow, unsure of the protocol, but the bulky crab suit doesn’t show any movement externally. The Doc seems to understand or not care; it’s hard to read him. He’s standing up now and looking at the door. Time to go then. Deep breath. Ok. I’m suited up and chemo ready. I can do this. I can do this. There’s a bell tolling. Time to go. I shuffle round to face the Doc.
“Now take me to the barricades”.