The Cancer Chronicles
Jen Eve Taylor
© Copyright 2021 by Jen Eve Taylor
ĎHave you got anyone here with you?í the dental specialist asks as he enters the room. He has a kind smile. I am back in London and the views from the hospital window are so good, I snap some photos while I wait.
ĎNo, I just popped here on my way to work,í I reply, unsure why I would have brought someone with me.
ĎI donít know how to tell you this, but... unfortunately, itís cancer. Iím so sorry.í He stands looking at me awkwardly from the other side of a dental chair that sits in the middle of the room. ĎIím so sorry.í
ĎI seeÖ Well... Most people will get it at some point in their lives anyway. I guess Iím just getting it out of the way now.í
He laughs, tentatively, and closes the gap between us slightly.
ĎAre you sure youíre ok?í
I reassure him. I donít want him to feel sad on my account.
ĎDo you want to ask any questions?í
I wonder how youíre supposed to know what to ask. I ask for a name. Osteosarcoma. Apparently itís rare. I feel almost proud of that.
ĎYouíre taking this very wellÖí he tells me. ĎYouíre very stoic.í
I havenít been called that before, but I like it. My tiny no-nonsense Nan, who used to say phrases like Ďonwards and upwardsí, would have approved.
ĎWell if youíre sure youíre okÖ.í
We stand across from each other. I have no idea how this exchange is supposed to end.
thanks,í I say. ĎThanks for your help.í I smile.
Iíd planned to go to work, so sure that everything would be fine. But instead, I stand on a busy street corner near the hospital and call my boss. I count the ring tones. Two, threeÖ He picks up.
ĎHi, so... itís cancer,í I say, my finger in my ear against the traffic. ĎI donít think Iím going to come in today.í
I hang up and take a deep breath.
ĎI have cancerí I say out loud and a few tears rush to the corners of my eyes. I blink them away. They easily stop, and I donít want to be that person crying in the street. All I have is a name and a name is nothing to fear. I walk across London Bridge.
My favourite rooftop bar isnít far away. Itís turned into a grey afternoon, but my cocktail is picture-perfect, with delicate yellow flowers I presume are edible balanced on its surface. I hold up my glass and toast the London skyline: the city I spent years dreaming of. London will look after me. This will be an adventure, like so many before.
When I get home, my housemate asks how my day went.
ĎItís cancer!í I say, and for some reason jazz hands seem appropriate.
He laughs, understandably thinking weíre all in on some great joke.
The smile fades from his face.
* * * *
ĎSo youíll start with Chemotherapy...í
As the nice Greek Oncologist speaks my body tenses up.
Ď7 months of it,í heís saying, Ďand youíll be connected to it for 24 hours a day, for five days a week... Youíll mostly be living onsite.í
His voice seems to fade out as I stare.
ĎDo you have any questions?í he asks, as if all of this is normal.
My mind is running ahead - what will my boss say? How on earth does sick leave even work? I have a festival coming up in a few weeks in a forest in the middle of LincolnshireÖ I havenít got time for this.
I donít want to panic. I take a deep breath.
ĎWhen do we start?í As long as I have a plan, things will be fine.
A cavalcade of tests and scans are ordered.
ĎThen weíll know what weíre up against,í he says.
* * * * *
I pack my bags for my first week and insist on getting a photo on my doorstep as I set off. Itís first-day-of-school vibes, though I hated school.
I follow the directions to Ambulatory Care, within the Cancer Centre where Iíd met the Oncologist. Iím in awe at the big lounge for day patients, which is light and airy but this is not where Iím bound. As someone signed up for the extreme type chemo, I have to walk through to a tiny clinical looking room that seems to get smaller as I stand in the doorway. A weekís worth of clothes are packed in the bag on my back, but I suddenly donít feel so prepared. Itís all moved so quickly.
People wrapped in blankets sit around in big reclining chairs, with bags of liquid hanging above them, and scarves tied around their heads. Loud beeping starts to my left. The person connected to it just carries on watching their laptop, but Iím startled. This is a room for sick people. I donít feel sick. But Iím about to get a lot sicker.
* * * * *
Iím amazed to learn that I can have full time chemo without spending it in a hospital bed. I take up residence for weeks at a time in the purpose-built hotel beside the Cancer Centre, which soon starts to feel like home. From there, I make my pilgrimage each day: I take the lift down to the street, walk to the end of the block, and up into Ambulatory Care, or ĎAmbicareí as itís affectionately known.
I chat with the nurses as they replenish the chemotherapy in the small navy bags and the big backpack they give me. They hand over lots of anti-sickness pills and I have to tell them my water intake and output levels, the latter I measure with a jug then test its pH to make sure one of the listed side effects isnít killing me.
I then reverse my journey back to my hotel room while the chemo pumps constantly.
By day the pumps blend into the background, but at night they seem to magnify in the quiet. One sounds like repeatedly dialing Ď9í on an old rotary dial phone, the other like a camera capturing a memory on long exposure.
With my own room, breakfast provided each morning and a TV, it feels so different from any hospital ward. Most days start with breakfast, the one meal provided. I try to eat something, scanning the options and wondering if I can stomach a pastry, yoghurt, or perhaps a plate of sausages and beans. Some days even the thought of food is beyond me and my body warns me not to try.
My favourite rooms are those with baths, which I navigate with varying degrees of success as I strive to keep the tubes dry that run out of my arms and into my chemotherapy. I manage to hang the smaller bags from the clothesline that pulls out over the bath and congratulate myself for my innovation.
Iím slow to move, I get tangled in the tubes and my backpacks are heavy. But the flexibility means I can occasionally pretend itís not happening, even as my body becomes filled with bright yellow and red chemicals that will burn my skin if they touch it. I walk the streets carrying bags that could be filled with anything, only I know they contain the drugs hopefully saving my life. Anyone looking closely might see the tubes running between, but most people walk with their heads down. Sometimes I take my chemo for walks to the cafť that I discover that sells ANZAC biscuits, a memory from my childhood. I avoid peak hour to lessen the chance of someone brushing past and ripping a tube out of my body. I have to carry a chemical spills kit just in case.
I drag my boyfriend along to stay with me, or perhaps he comes willingly, though itís hardly the holiday we were planning to have. Instead of dancing and camping, weíre waking up to alarms going off on my pumps and we walk across to the hospital at midnight to find someone to help. I panic that somethingís gone horribly wrong and he tells me Iím being silly. It does little to reassure me.
In the evenings I send him off to get dinner. We search our minds for things to cook in the basic Microwave Ovens available in the hotel. I remember the existence of Chicken Kievs, which my Da used to cook for dinner when Ma was away. So we get some, and I watch with excitement as they cook. Then I find out that the chemo somehow makes chicken taste horrible so I just push it around my plate.
I spend the days mostly on my own - the state Iím happiest in - aside from brief visits to the cancer centre. Patients at the hotel live separate lives, but at breakfast we exchange waves and knowing smiles. An over-enthusiastic fire alarm often means we troop down the fire escape together, taking it in turns to hold doors open and chatting on the street about how our treatments are going as we wait to get back in. We laugh and smile, like weíre in some sort of club, bonded over shared experiences.
* * * * *
On weekends Iím disconnected from the chemicals and flee to the comfort of my own home, making plans that I eventually become too ill to keep. Within a week of starting chemo, the time comes to invite friends over and we take it in turns to shave off the last of my rapidly depleting hair. I invite fun friends who will dance around with me and laugh. I donít want anyone around me who will look at me with pity, or tilt their heads and speak to me as if Iím made of china.
We blast Arctic Monkeys and Franz Ferdinand and boogie around the living room. I cut an inch off my friendís blonde hair, an act I make her drunk-agree to the night before, and half an hour later she is running clippers over my head. I giggle as the hair falls on the floor around me, piling up in bigger clumps that I would have expected considering the rate at which itís been falling out. We sweep up the fallen hair and I pull on my Doc Martens, slip on my leather jacket, and paint on heavy black eye makeup. We venture out to food markets and wander the streets, soaking up London.
* * * * *The last thing I want is pity. I smile at every opportunity, to everyone I meet, no matter how poorly I feel. I take my favourite soft toy, a cow named Clarence with me to the hospital. I introduce him to everyone and we become a famous pair. I clutch him close in MRIs when I feel trapped and terrified, and he keeps smiling on my behalf. By holding onto him, Iím holding onto myself.
* * * * *London turns cooler and I crunch through red and gold leaves between the hotel and the Cancer Centre. On one of my rare Ďrest weeksí off from treatment, I traipse down to my local hospital when my temperature spikes. Thereís no time to get to the hospital in central London where Iím having my treatment. As I walk slow, tentative steps, the snow falls around me, so light it sits on leaves like candy floss. The chemo has depleted all my healthy cells, and an infection is trying to kill me. The window of my hospital room looks out onto the entrance to the mortuary.
The local doctors who I donít know struggle to extract blood, sticking countless needles into me. They look at my permanent cannula as if itís something to fear, refusing to use it despite my pleas. They list issues found in the blood pulled from my tiny veins, panic rising in their voices as their list grows. Medics rush in from various teams, shocked that Iím upright and chatting.
Thereís no targeted treatment for my type of cancer - a cancer that is usually found in young boys, dogs, and the occasional polar bear. Neither treatment nor survival rates have improved much since the 1960s, when my mother was at university. They just give you the most intense treatment they can, toeing the line between saving you and killing you, playing a careful game of brinkmanship. They keep monitoring your heart, your kidneys, your hearing, to see if the treatment is killing you quicker than saving you. In developing nations, this level of treatment is impossible due to the required level of monitoring not being possible.
My boyfriend decides that the week following the hellish hospital admission is a good time to tell me heís had enough and heís moving out.
We sit on my bed as he lectures me, though I have to excuse myself to go and vomit, my ravaged stomach not mixing well with the champagne Iíd had earlier for my Daís birthday celebration. I havenít got the energy to probe or cry, so I make jokes. I feel nothing. Iím just so so tired.
* * * * *Theyíre stopping my chemo early. The Oncologist tells me as if itís the easiest thing to say, while I imagine my life ending and all hope lost. The latest tests show that my kidneys are failing and need to be saved. It feels like the beginning of the end, but Iím assured itís not. Apparently, they expected treatment to end this way, they just didnít tell me. They seem to keep things from me that I wish they wouldnít. Iím not sure whoís benefit itís meant to be for.
* * * * *Surgery comes before Iím ready. Iíve only just finished chemo; I keep running my hands over the soft fuzz of hair appearing on my head.
My main surgeon is also Greek, like my Oncologist. I stop myself asking if theyíre all big Sarcoma fans in Greece, as I havenít yet gauged his sense of humour.
We might cut your face.
Maybe your nostril, that might need to go.
Youíll lose most of your top teeth.
Hopefully weíll get the cancer out but we canít be sure.
Then weíll cut out your scapula along with the skin and muscle from your back. And that will become your new jaw and the new roof of your mouth andÖ
I hear that rock climbers never look down while scaling large cliffs, not until they are safely at the other side. I canít look down, not even for a second.
All I can do is nod at my surgeons, yes, I understand. Sure. Agree to it all.
I need my parents, who are happily living out their retirement in Australia. I set aside my pride and ask to be looked after. I want to hear my motherís voice reading me books that she used to read on nights when I couldnít sleep. I want to be taken away over the Yorkshire Dales by the words of James Herriot while I rest my head on her lap. They book last minute flights.
The agony hits me first. I wake up with a breathing tube sticking out the front of my throat preventing speech, unable to write legible words because of the chemo damage to my hands. Iím delirious, confused, and no one is making any sense. Only then do I realise how unprepared I am. I want to grab someone and shake my head, no, I donít understand. How could I possibly understand waking up after 16 hours in surgery to remove my jaw and teeth; waking up to a face so swollen that I hardly recognise myself?
My Maís voice floats in the air and I want to cry with relief at the familiarity of it.
ĎThey didnít cut your face,í she says.
I drift in and out of consciousness for days, but she is there always, a constant in the madness. My parents collect notebooks and coloured felt tip pens from nearby stationary shops so that I can communicate. The books have slogans on the cover, like: Be your own kind of beautiful. I write and I write endless frantic notes, but people struggle to read my formless scribbles.
During hospital nights, time is fractured; nurses forget patients are sleeping, and alarms go off, pushed by those wondering if this night might be their last.
On nights I struggle to breathe through the tube in my throat, I wonder if this night will be my last. I try to draw air through the tube, as mucus gurgles within it and I feel like Iím choking. Then I meet my guardian angel. She appears by my bed bathed in light. Rose, the nurse who helps me through those hellish nights. I donít know it yet, but we will remain close long past my hospital stay.
Ma always told me that things seem worse at night time. Itís when all our fears parade themselves inside our minds. But Rose helps me through, as does the rain sounds I play through my headphones to fade out hospital noise. Suddenly I am transported back to my childhood bedroom in Sydney, as the rain batters on the flat metal roof above me. The same roof that possums would dance, chase and sometimes fight across. I sleep at last until I am woken before long, by a hand on my arm: a nurse checking whether I am still alive.
* * * * *
The new tissue in my mouth is dying.
I notice strange soft bits appearing inside my mouth in the early hours of the morning, five days after surgery. My main surgeon is off on a nice long summer holiday. I picture him sitting on a beach while medics rush around me. I trust my remaining surgeons completely, even though they donít know why itís failing. We have a window of a few short hours to save it, they say. The only problem is that the operating theatre is being used and we need to wait. My Da paces back and forth looking for someone who can hurry the process along, asking everyone if they have more information. I have to ask my Ma to help wash me with the pre-surgery antibacterial wipes because itís impossible to do it myself whilst also managing my drains and cannulas.
Finally, Iím wheeled back in to the operating theatre for what they say will be 4-6 hours. My father describes it as the longest day of his life. Then the phone call comes ten hours later: It was a success.
I insist on taking photos, a never-ending need to document my reality and share it with the world - though my pictures differ somewhat from the avocado-on-toast posted by other Millennials. In the mirror a face stares back, but itís not my face. I search frantically for anything familiar: in amongst the swelling and bruising, I find my eyes staring back. I am still there, somewhere.
When nothing seems to be getting better, I search for one thing to write down in my notebook (ĎGood Vibes Ahead!í) that might be considered progress: a drain removed, some stitches removed, standing just outside the hospital door with my parents and enjoying ten minutes of sun on my face, the tube in my throat coming out, My first cup of tea, my first words.
* * * * *After 15 long days in hospital, Iím discharged into my parentís care. Theyíve filled my living room with flowers, and I collapse on the sofa. Lilies, Irises, and Eucalyptus leaves surround me. More flowers continue to turn up from friends and colleagues. If my nose hadnít been blocked off during the surgery, perhaps I would be able to smell them but the colours are beautiful and bright.
ĎTheyíre from my adoring fans,í I joke to my housemates, as if Iíve just finished opening night of a play.
My parents rent a flat a few streets away from my shared house and they walk the distance between us each day. Da doles out my medications like my own personal pharmacist. Ma prompts me every few hours to do the physio exercises I would have happily missed. She makes me smoothies, soups, whatever liquids I can manage to get in my swollen mouth. It all ends up a mess down my front. I have regressed through the decades; a sick child being looked after by her parents. But I know I need it. I gently tell my independence it can rest and take a back seat for the moment.
Eventually, Iím able to move onto eating omelettes and scrambled eggs. Da makes me pancakes; a childhood treat. I carefully sprinkle the sugar, squeeze the lemon, and roll it up, cutting tiny pieces and swallowing them whole. Before long, Iím messily managing sausages and mash. Then, in a cosy pub in North London as we sit with our backs to the Spring sun streaming in through the window, I discover I can nibble crisps with my few remaining teeth.
* * * * *May comes, and my parents return to their own lives in Australia. I slowly go back to my corporate job in what they call a Ďphased returní. Iím desperate to prove that Iím still the same person, that nothing has changed, but trying to keep up is harder than I remember. The things Iím meant to worry about now feel inconsequential. Are endless meetings and responding to emails from angry clients all that my survival was for?
Thanks to the surgery, I can no longer sing, and the chemo damage to my hands means I canít play guitar. I desperately hope itís temporary, but I feel as though Iíve lost the most important parts of me. Yet I turn up to work every day and I smile through the huge foreign teeth they give me after 14 toothless months of waiting. I hate them.
Itís getting harder to cope with the daily grind and I can feel my gypsy blood rising. I know Iíve got to do something; I need a change, a new adventure. Itís the longest Iíve lived in one place, but I donít ever want to leave London for good. So I quit my job and book a holiday to Australia.
* * * * *Long days are filled with sun, the lights of the Christmas tree blinking through warm December evenings. I play a gig with my parentís band in a small bar near their house in Sydney. Everyone is squeezed in close together, dancing before us as we play one of my favourite songs by local band Boy and Bear. I still canít sing like I used to, but perhaps now only I can tell.
I drink coffee at my favourite cafťs and go for walks over the headland, looking out to sea. I drive up the East coast of Australia to visit friends, spending my weekends with friends; Kirsty and Zac, Ash, Kat, SimoneÖ I use the weeks to slowly make my way between them, taking time for myself, and spending moments writing from beaches, parks, swimming pools, pub gardens and hotel rooms.
I stay for two nights in the town where I went to university, marvelling at how much time has passed and how different things were back then.
But I crave home: the world I built for myself, my flat in London, my friends, my future.
Covid cancels my return flight and itís odd to have my plans changed by something other than cancer. The threat feels miles away from us in Sydney, our lives hardly changing, other than by my extended presence. The sun still shines and I make the most of the extra time: swimming in the pool, fish and chips on the beach, another gig - this time in our front yard. With the approval of my oncologists and surgeons, all of my monitoring scans are missed.
* * * * *London sparkles and I am giddy with happiness at returning after ten months away. I meet a friend to tour Highgate Cemetery, I meet another for an Autumnal walk on Hampstead Heath, all fitting around quickly organised hospital appointments. At the Cancer Centre, my team has been looking at my delayed scans.
ĎI want to make sure you have support.í My surgeon is saying as he sits in front of me again.
ĎIíve... got cancer again, havenít I?í The words rush out of my mouth.
ĎThere is disease, yes.í
ĎYou mean cancer.í
I knew it, somehow. There was no other answer for the increasing pain in my face and my deteriorating eyesight, though I told myself there could be another explanation.
ĎWhatís the plan?í I ask him, my hands gripping tightly in my lap. ĎTell me you have a plan.í
ĎItís not going to be easy. Weíll have to go in again.í
A huge mass is taking over the bone below my right eye. In less than six weeks between the scan Iíd pushed to get in Australia and the one they organised on my return, the cancer has gone mad.
I raise my hand to my face, feeling the parts that had only just started to become familiar but would be gone in a matter of days. My cheekbone, my reconstructed jaw, my new teeth would all have to go.
My surgeon says something which I donít quite catch. He is so calm, so quiet.
Leaning forward, I say: Ďsorry what was that?í
ĎYour eye has to go too.í
I see in kaleidoscopes; black and white patterns across the memory of where my eye used to be. They say itís permanent, this phantom sight. During the long nights it makes me feel claustrophobic. On other nights, I let it pass over me, breathing in then out, so glad that I am still here, still breathing.
My friendís brother calls to tell me she died at midday. Weíd met at cancer camp, which neither of us really had any business being at considering we hate organised group activity and talking about feelings. But it was worth it to meet her, my soulmate. Sheíd moved back up North for her last few months and died wearing the necklace Iíd given her that said Ďsassyí. It will never be taken off her now, as she was buried wearing it.
Iíve lost so many friends. Friends I made knowing that they were going to die. They filled my life with joy and then they were gone. I grieve for them and I grieve for the parts of me that Iíve had to lose: teeth, eyes, bones. Sacrificed so I might get a little more time. Time that they didnít get.
There is an expectation with stories like mine for some kind of catharsis. A triumph over circumstance, or a tragedy that throws our good luck into a blazing light, leaving us mad with gratefulness for all we have. But where I stand now is neither in triumph nor tragedy. I am breathing. This is what I have. This is what I hold on to. We have somehow come to believe that human nature can transcend fate. That strength of character can triumph over circumstance. That if someone is suffering, then itís within their own power to fix it, to cure themselves, to Ďfightí their own illness. We are conscripted into a war we have no control over and told to win, not Ďloseí a Ďbattleí. The truth is that cancer cells do not care how positive you are, nor how strong your will is to live. But for now Iím still here, still breathing.
The histology report from the last surgery said that they think they got all of the cancer out. Perhaps after all, I will be allowed more time. I will live to see another day at least, and perhaps another year end. I will breathe in then out for a little longer. The internet says my cancer is likely to return, but although I am a statistic, statistics are not me. I choose not to live in the shadow of statistics. I am not Ďstrongí, I am not Ďpositiveí, I am feeling, experiencing, all the moments without shame, without hesitation. Every snowflake, raindrop, smile or tear, each word I speak, each word I write or read, each hand I hold. I breathe in then I breathe out. And I allow myself a little hope.
Jen Eve Taylor grew up in Sydney, Australia, but now lives in London Ė the place she considers her life's one great love story. She can be found tackling the ups and downs of life on her blog: www.thecancerchronicles.blog