November 30, 2017

The surgery.

Before I can tell you about the surgery, I need to tell you this: writing started as a distraction. It was intentional, to take me out of the woods, to somewhere bright and warm and clear. And I knew, in truth, that my cancer monopolised me. Especially in the beginning. I could go about telling myself, telling others, that cancer was quiet while I wrote. But it wasn’t. I couldn’t silence it. Still, writing was a gentle diversion.

Over time, I have changed my thinking and my approach, about my health and to my disease. Cancer does not define me. I can get through minutes and hours and sometimes, a day, without thinking about cancer. My writing, too, is different. I do it because I love to, not because I need to. I think less about writing. Writing seems to think about me. And when it does, my mind dances. Words and places and moments tumble inside me. I can see them. Zigging and zagging, running together playfully, teasing at new ideas. When this happens, when the mood strikes, when the time permits, I scoop up my laptop and place it on my folded legs and open a fresh blank page. A cushion tucked into the small of my back. My glasses on. And then I type. And then my mind is focused. And then the moment is mine. And then I feel complete. And then, my fingers howl in pain.

This pain is my peripheral neuropathy, and it has escalated every day since it arrived. Not just in my fingers. Each step I take feels as if I am dragging my feet through deep, coarse sand. My shins and calves are numb to the knee. My skeleton aches and my skin prickles. First thing in the morning is always the worst. My legs feel like they may crumple under me as I walk down the stairs, and my eyes must be focused on the railing to confirm I am actually gripping it. And all of these sensations are frustrating, but my fingers – oh, I miss my fingers. Writing has been such a cathartic outlet for me; my own space, my own head. Unique and exceptional, because first it is all mine, and then it belongs to everyone. Writing was nowhere and then it was everywhere. Cancer gave me my writing, then promptly poisoned it with pain, as if to confirm in no uncertain terms that nothing is ever, truly, mine. Cancer and its games, corrupting my writing to such an extent that it is, at times, now a supreme pain in the – finger.

My neuropathy has been caused by my chemotherapy, and it may be here to stay. Or it may just as easily fade away with the same aloof gradient with which it arrived. At the moment, I don’t know. Nobody knows. Chemotherapy needs to be especially atrocious in order to decimate cancer cells, and that means taking some good cells too. So be it. Yes, it makes me mad. Even a little unhinged, at times. Surely, it is unjust that I have to get the cancer and the neuropathy? Surely, I should be allowed a simple moment to quietly create something without having my cancer thrown in my face with every single strike of every single key?

And when I am swimming in all of this anger and feeling short tempered, even at my wits’ end, you may expect that I prop myself up with some positive self-talk. But I don’t. You might think it reasonable that I celebrate beating it. I don’t. You might think it right that I at least gently console myself. I don’t need to. Not anymore. Not since my surgery. Now, I only need to remind myself of this: shoulder tip pain. Surgery-induced, ferocious, no-good, deplorable shoulder tip pain. Nothing in this world is worse than shoulder tip pain. Nothing. Take that, neuropathy. So there, cancer.

But let’s go back a few steps.

On 31 October 2017, I woke with a smile tickling the corner of my mouth. This was going to be a good day. I lay in bed for a moment, savouring it. Today, I would have liver and bowel surgery. Today, my expert surgical team would chase the last pieces of demonstrable disease out of my body. Today, this day, was about to be the day that I was told I would never have: my chance to eliminate the cancer that would otherwise eliminate me.

My admission time was 11:30am. I was ready to leave – physically, emotionally – by 8:30am. I played with my little man and snared hugs with my large man and listened to my empty stomach rumble, impatiently watching the clock.  The sun struggled through an overcast Melbourne day as we drove to the hospital.  We all squinted, laughed nervously, chatted aimlessly, Tim and I in the front, my mum and dad packed in to the back.

I arrived into the pre-admissions area and breathed deeply, trying to release my stiff shoulders of their creep to my ears. I was ushered into a small room to review my admission paperwork, and an even smaller room to change into my hospital gown. Before I tried, I knew I couldn’t tie it: my fingers recoiled at packing my clothes into a neat brown paper bag, so were unquestionably lacking the dexterity to tackle a neat bow behind my back. A sympathetic nurse assured me gown bows were elusive to most as she finished the task easily, and I completed my look with blue booties and a red cap.

I sat in a plastic chair with Tim next to me for 15 minutes or so, in one of the many waiting areas that are scattered through the hospital, a warm blanket wrapped tightly around my knees. I padded across the hallway to the bathroom twice, although there was nothing but nervous energy left in me. My liver surgeon seemed to materialise from nowhere, a skill that he and his surgical peers execute with such finesse, I can only reasonably conclude the move must be taught in medical school. I had seen him in scrubs so many times before, moving swiftly through his consulting appointments so he could return to where he was needed most: getting to work on his next patient. Today, finally, fantastically, that patient would be me.

He motioned to a seat for me and a seat for Tim and asked me how I felt. I wanted to tell him I felt resplendent on this beautiful, auspicious day that was about to restore my future, righting me on my path towards my true potential. I settled on “great, really great”. He then rattled off the same set of questions that I had been asked countless times already that day: “tell me your name, tell me your date of birth, and tell me, what are you here for today?”. I grinned at the absurdity of me telling him what he was about to do, but obliged nonetheless.

He kept his head down as he moved his pen across my hospital file, reminding me of the particulars of the surgery. A bowel resection. A liver resection. An anaesthetic. I would not recover in recovery – I would wake up in the Intensive Care Unit and be there for as long as needed. He was moving through a process, a process he had so clearly moved through again and again, day after day. But just before he was done, he raised his head and met my eyes. He had done this a couple of times over our last few appointments – once it became clear what we were going to do. He didn’t need to say anything. I knew what the look said: we went for it. We chased the impossible and we were there. Time to operate on the inoperable. He had put us on this path. We wouldn’t be here otherwise. This was such a rare opportunity, and no discussion of the risks was going to change our approach. Change my mind. Sway me from my commitment to this surgery, my closest shot at a cure. He knew it and I knew it. He shook my hand and shook Tim’s hand and he was gone.

I was upgraded from chair to bed. There would be more waiting but I wouldn’t be alone: Tim was quietly ushered in next to me. I hadn’t been there for more than two minutes before my own version of an angel – certainly, the closest thing to divine spirit that I care to encounter – arranged for my parents to join me. I have learnt that in any tumultuous experience, it is the people who make the difference. So I say to this person, thank you: you can’t begin to comprehend the difference you make to me and everyone I cherish most.

There we were again, the four of us. Packed in behind a flimsy hospital curtain. We recorded short videos and shared long hugs and whiled away the hospital time as we have grown accustomed. The glare of the clouds had been replaced by the glare of fluorescent lights; the nervous chat and laughter remained. And then, it was time. I squeezed my mum and my dad. They told me the loved me and that they were proud of me and that they would see me on the other side. The cancer-free side. Tim planted three kisses on my lips and one on my forehead. I twisted in my bed to wave at them as I was wheeled away, and tears welled behind my eyes as I watched them wave back at me. I wasn’t scared. I’m sure they were. I simply felt such abundant love for them, these people that had put their life on hold to make sure mine continued.

My bed was parked in a small bay outside the operating theatre. I was ready to go, but knew I would have a longer wait. There is always a longer wait. A curtain was pulled around me once again, so I worked my eyes along the hooks that held it up, counting them. Wondering how often the curtain was washed. If it was ironed once it was dry. What time of day it would be re-hung. Do curtain cleaners work overnight? Perhaps curtain cleaning is a weekend thing. Probably a bit of a rolling project across the hospital. Who coordinates curtain cleaning?

Feet passed beneath the curtain, back and forth. Unidentifiable black sneakers and highly identifiable black Crocs. A surgical nurse stopped to ask me the questions – those same questions – and told me it wouldn’t be too much longer, just a short wait. My bowel surgeon and liver surgeon both popped around the curtain at various points to ask me how I was feeling. My answer was starting to sound unoriginal and a little forced – truly, who feels great at this point? Both left telling me there would, no doubt, be a bit of a wait, just a short wait. I knew I was waiting for the room to be prepared, and then, for the anaesthetist to arrive. I told myself that if I was going to be cut open and have my insides spilt across the table, it was best that this be done in a clean room. Equally, if an anaesthetist was going to stick an epidural needle into my spine, probably best that she feel unflustered, even relaxed, when she was doing it. The wait was probably worth it.

She did seem perfectly calm when she appeared. She moved swiftly, expertly, giving me what she described as a ‘cocktail’ via my hand, which she said would make me feel relaxed and happy. Standard cocktail, then. She helped me sit up and told me I was doing magnificently as she inserted the epidural needle in my back. This kind of positive feedback always has me questioning the sincerity of its originator – am I indeed some kind of epidural-receiving prodigy? I decided to go with yes. I figured I needed all of the props I could muster in that moment.

She helped me lower my head back against the pillow. Finally, now, we were ready to go. The curtain was pulled and the locks clicked off the wheels on my bed and I was pushed into the operating theatre. I remember moving onto the surgical table. And then I remember nothing.

So much had happened to get us to surgery day. To that moment. So much pain, so much fight. So much sacrifice and hope and sheer determination. So much fear and so much pride. So many questions and a complex jumble of answers. And in that moment – the culmination of our work, the pinnacle of our efforts, the beginning of our next – I was sleeping. Meaning, the end of surgery day kicked off with a tidy reference to where it had begun: with me waking up. Only, that is where the similarities end. Because this time, I was in complete agony. I was barely conscious, barely able to find words to string together into a sentence – but they all featured ‘shoulder’. The pain in the tip of my shoulder was unbearable. I writhed against the sheets and immediately recoiled at the movement – of course I couldn’t move, I had just been cut open. My body was screaming at me. A nurse said my name and worked quickly around me. As I opened an eye and became aware of my surroundings, I saw my family standing neatly in a row, against the wall opposite the door to ICU, watching me. Waiting to be reunited with me. Waiting to celebrate our surgery. Our triumph.

I wailed. I moaned. I made noises that frankly, I could not now reasonably discern.

All surgery is major. But this one was so significant. Momentous. I had wanted to wake up and think of my future and my family. Of the opportunity I now had to calibrate my outlook and focus my rehabilitation and build my strength. But there was not a single shred of joy in my waking. Only pain, and shortly thereafter, despair. At this point, I didn’t know the outcome of my surgery. I didn’t care. I couldn’t care. And for the next few hours, this is how things would be. The degree of pain I was experiencing was completely intolerable.

Over the coming days, I would transition from surgery to recovery. I would have the opportunity to think about the outcomes of my surgery and consider sipping water and coax my mind and body out of bed.

I was not there yet. I was nowhere near recovery. The triumph would come. But for now, I was awake. And I was alive.