AFTER THE LULL

Part of the THIS IS THE MOMENT series

The CHUM, yesterday

January 14th, 2019

I’m back at the CHUM today, after an almost month long hiatus from chemo. It was an unplanned winter break. It felt a little like playing hooky, like an unexpected escape, like getting away with something.

But clinical trials don’t let you off the hook for very long, and today, it’s back to a full dose of reality: pre-chemo blood tests, a visit with Dr. Aubin, the chief oncologist involved in this trial (a young, petite, brilliant woman who has been wonderful with me), and SURPRISE !, my second CT Scan (the study requires a scan every 8 weeks).

I didn’t know this was on today’s calendar. This serious return to reality is unwelcome.

I should feel optimistic; everything so far has indicated that my body’s response to my treatments is positive, but I would have liked to coast on that feeling a while longer. There’s a whisper inside my head cautioning me to prepare for the possibility of disappointment.

What would disappoint me? I have to think about that.

(I have lots of time to do so: 4 hours in fact, because it’s 10 am, I’m done with Dr. Aubin and my scan is scheduled at 2 pm)

—If my tumours have recovered and even grown, I will…I will…

I can’t complete that thought.

It belongs in the Do-not-go-there-until-you-have-to category. The place of the unwritten future. May it remain banished there.

The CHUM, yesterday

—If my tumours have shrunk a lot less than on the first scan?

Yes, this would definitely disappoint me, but it seems quite plausible, doesn’t it? My body has been adapting to the poisonous drugs invading it; surely the tumours are pursuing their own survival strategies?

When you have cancer, things get real very quickly.

The holiday is over.

But you know what? Almost 5 months into chemo, I’m not frightened the way I was before it started. I live more comfortably within my life’s new landscape. Forward momentum means very little to me now.

What’s just bubbled up from my memory are images—like footage—of all of those summers of my childhood, when we would pile into the car with a trunk full of suitcases, and a cooler full of food, and off we’d go, on vacation, usually eastward, spending hours and days in the car, my sisters and I seated in the back seat, sometimes with our grandmother; my parents in the front with one of their daughters wedged between them if grand-maman was aboard, watching cars whiz past us, in both directions of the Trans-Canada highway, and the scenery along with them. Whoosh! Whoosh!

That’s how my life has felt, for the last decade at least: me speeding through the days, and rarely in the driver’s seat, constantly monitoring the passage of time and feeling it running out…

Cancer brings the stillness of a dropped anchor.

January 15th

What struck me yesterday in Radiology was how sick people were. So many were rolled into the CT-Scan and MRI area in gurneys, that I lost count. One older man could barely stand, but still tried to avoid using the wheelchair provided for him to move about. He sat very still while having a catheter installed in his arm. He couldn’t speak, just the faintest whisper was possible for him, because there was some wound or incision in his neck. But every single one of his breaths was audible as he shuffled to the room he was called to.

I remember my first scans well. On that day last July, I was to have the first of my two diagnostic scans: the MRI and the CT-Scan—those that ultimately revealed the advanced stage of my cancer. I was still new to the stages of malignancy, to the CHUM, and to the hijacking of my life by a disease. On that summer day, waiting seated along that same wall where I found myself again just yesterday, with a good half-dozen other patients, I felt and looked like the newbie. I felt younger, and vibrant. I could still smile and act relaxed. But right next to me was a woman at the other end of the line. She made eye contact with me immediately and I could see how much she wanted to talk. She may have been only 5 or 6 years older than me but she was ancient by the standards of health. Her pale blue hospital robe—just like the ones the rest of us were wearing—accentuated her pallor and that unmistakable yellow-beige “chemo” complexion that’s so common to patients who’ve been battling cancer for a long time. Her hair was short and patchy and her eye lashes and brows were virtually gone. But she turned to me and smiled an exhausted smile, and though I’ve forgotten her exact words, I remember that she was three years into her battle to survive breast cancer that had travelled to her bones and was now in her brain. I remember that she touched the port-a-cath, that visible square bump under the skin of her upper-right chest—which is just like the one I now have implanted in me—and said: “This is what you want, it’s fantastic.” She was right. It is.

I’ve thought of her often. I wonder whether she’s still fighting to survive, five months later, or whether her body has reached the point of exhaustion. I think about her will to live, about her gentle smile, and about the distance between us and how much of it is delusion.  How many patients like her are there? Where does their strength and determination come from? Their willingness to be stripped of almost everything but their pulse?

Hawke, Marjorie; Probe; Royal Free Hospital; http://www.artuk.org/artworks/probe-123837

You enter the area, you walk into a small room and lock the door, because you have to get undressed. In an impressive, succinct combination of images, words, and alphabetical order, you follow the guidelines written out for you on a poster hanging on the wall.  Instructions A, E  and F pertained to my situation. When you leave that change room, you’ve left behind your distinctiveness, your spark, your colour, and most of your joy, because you’ve become indistinguishable from everyone else. The hierarchy of illnesses is almost invisible. Everyone is just a patient.

No one could stand this for very long. We all need the recognition and validation of others. We need to experience agency in our lives. We require the dignity that comes with being able to speak for ourselves, to be treated as individual, precious humans who also express themselves by means of their clothing, their demeanor and their social interaction. Sometimes, just the look in our eyes is enough. Some of us are positively heroic in our endurance of pain and our astonishing resolve. Some of us are sad, some angry, some terrified and some, all of the above.

Illness and injury reveal us to ourselves. And to our loved ones, I think.

Yesterday afternoon, I couldn’t wait for my CT Scan to be done. I lay there, on the mobile slab inside the big white ring that vibrates and hums and lights up, with my arms above my head and the catheter placed uncomfortably right where my left arm bends, and held and released my breath as prompted by a disembodied voice, and felt the hot, fluttery rush of iodine as it entered my bloodstream and quickly made it all the way to my bladder. And then it was over. My catheter was removed, I gathered my things, re-entered the change room and recreated the person I am by dressing and leaving Radiology, walking down the long, labyrinthine hallways of the CHUM, till I reached Champ-de-Mars metro station, blending in with everyone. Similar, but Me nonetheless—and free.

Croker, Michael; Milton Keynes Hospital at the Millennium; Milton Keynes Hospital NHS Foundation Trust (managed by MK Arts for Health); http://www.artuk.org/artworks/milton-keynes-hospital-at-the-millennium-27098

 

 

 

THE PERSON INSIDE

My son Christian’s life as an emerging actor has already taken him to places I would never dare to explore. One of these is the McGill Simulation Centre, which is an integral part of the medical education of many health practitioners in Montreal. He works there part-time.

Sometimes, Christian’s only job is to offer up almost every inch of his body so that med students can learn ultrasound techniques. At others, the full range of his acting skills is tested, as he works with other actors to bring to life scenarios for young student MDs and even seasoned practitioners, simulating situations that are designed to test the maturity, knowledge, technique, resourcefulness, empathy, interpersonal skills and even just plain resolve of the caregivers.

The McGill Simulation Centre
The McGill Simulation Centre

Listening to his stories has made me realize how difficult medical training is and how much is expected of the students who are often only in their early twenties. It’s helped me to understand how much thought is put into the training of physicians, nurses, occupational therapists and everyone else who passes through there, and helped me to see that acting at its purest is the art of compassion.

 

Guy, Alexander; Crib; Glasgow Museums; http://www.artuk.org/artworks/crib-84339
Guy, Alexander; Crib; Glasgow Museums; http://www.artuk.org/artworks/crib-84339

Last week, Christian was given his biggest challenge yet. He was asked to play the role of a young adult with cerebral palsy whose symptoms include spastic diplegia and spastic dysarthria. In this especially long and multi-scene scenario, his character, Pat, is fighting to maintain an independent life in the face of increasing pressure to place him in institutional care.

A few days into his preparation, I asked Christian if he could show me how he was coming along with his character. In seconds, Christian transformed himself right before my eyes. His body shifted until it had assumed a strange, distorted angle on the couch. His head twisted backward in a way that exposed his neck and made his chin protrude oddly, as though pulled leftward by a painful force and constraining him to look at his interlocutor from an obtuse angle.

Thomas, Joseph Henry; Representing Bodily Pain from the Passion; Merthyr Tydfil Leisure Trust; http://www.artuk.org/artworks/representing-bodily-pain-from-the-passion-153526
Thomas, Joseph Henry; Representing Bodily Pain from the Passion; Merthyr Tydfil Leisure Trust

And then he began speaking. And there was no more Christian. Everything that makes Christian himself had been stripped away and what was left was a thin, monotone and laboured voice, struggling to express itself. Every word seemed to come at a cost to him. Only his eyes were steady. And distressing.

He didn’t make me uncomfortable or embarrassed: he shocked me. Being with him and paying attention to what he was saying, I realized that despite the clarity and intelligence of the thoughts he was expressing, my own mind wanted to reduce him to so much less than he was.

And it became painful to watch my son this way. And it made me cringe, because I know, now, in a way that I didn’t before, what the suffering of this person Christian had briefly become must be. And the struggle. And the injustice of being locked inside a body that cannot come close to expressing the expanse and the dignity of the person inside.

And the vulnerability.

Carriere, Eugene; Maternity (Suffering); Amgueddfa Cymru - National Museum Wales; http://www.artuk.org/artworks/maternity-suffering-160108
Carriere, Eugene; Maternity (Suffering); Amgueddfa Cymru – National Museum Wales

When he came home after his performances that day, Christian told me that he knew that if Pat had any chance of avoiding institutionalisation, that he would have to make every health professional in the scenario like him—fall for him—and begin to root for him.

This is beautiful work.

Every time Christian becomes Pat, even for just a flash, my eyes well up. He does it because he knows he’ll be playing him again soon and he wants to keep him vital and true. And because he cares about him.

This all coincided with a period of sickness that rolled like a wave through my family. One of my sons had fever for three days, recovered for a week and has just relapsed this weekend. His twin was also intermittently feverish and eventually wound up with bronchitis, while Penelope and Graeme, his children, were treated for tonsillitis, otitis and bronchitis. Then it was my turn. Two weeks in, I’m still coughing, but at least my strength has returned.

Until this recent family epidemic, I hadn’t been ill for several years. Sick with fever last weekend and feeling weak and wobbly, I felt vulnerable and diminished and a bit scared. I couldn’t be sure that I’d be able to work the following week. I couldn’t be sure I wasn’t incubating pneumonia. I couldn’t know for sure when I’d be able to go get groceries, or clean the house or do any of the mundane things that make up daily life.

All this brought about by a simple virus. Everything happening out in the world took a back seat to the necessity of recovery. To bringing my body’s affliction to an end.

Sims, Charles; My Pain beneath Thy Sheltering Hand; Bethlem Museum of the Mind; http://www.artuk.org/artworks/my-pain-beneath-thy-sheltering-hand-192943
Sims, Charles; My Pain beneath Thy Sheltering Hand; Bethlem Museum of the Mind

These past few weeks, I’ve been schooled by life.

Actually, I believe that this should be a daily occurrence, as constant as sunrises and sunsets. Every day should be about gathering in more learning and seeing more clearly. But there’s something about human consciousness that’s flighty and inconstant and it causes us, me, to check out or else be diverted.

At the same time, reliant as I am on the stream of information pouring into my life through the mushrooming screens that have become my most used windows on the world, I’m not growing wiser. My representations of life are hardening around ideas and actions that test the strength of my connections with the world, that wipe away understanding and compassion, and fuel fearful, anxious feelings.

Recently, I’ve felt more like a greyhound on a track than a sentient, mature woman.

And then there was Christian and Pat.

I marinate every day in news about wars, walls and the billions in currency it takes to make each happen; about mass migrations and refugees and camps on almost every continent that have become lawless dead ends where violence and starvation have set up permanent residence; about immigrants, both legal and illegal and about how, for some, living off the radar without status is the brightest option; about national greatness and sovereign borders which seem to depend more and more on turning inward and away. About Others. Aliens. About Them and Us. More recently, about white-nationalism and just this week, an anti-egalitarian, anti-democracy movement skittering behind the scenes and referred to as Neoreaction or NRx.

 

Currie, Ken; The Troubled City; National Galleries of Scotland; http://www.artuk.org/artworks/the-troubled-city-211226
Currie, Ken; The Troubled City; National Galleries of Scotland

It’s a swirling vortex of what’s worse about us. Its clamour is drowning out the calls of our better natures. It’s smothering our compassion with darkness. It’s making us blind.

I think that our civilisation needs retraining. I think serious intervention is required to help us see what’s behind our outer shells, to understand every individual’s struggle, and to embrace the expanse and the dignity of the person inside each one of us.

I think it needs its own simulation centre.

Cauchi, Carmel; The Touch of Comfort; George Eliot Hospital Chapel; http://www.artuk.org/artworks/the-touch-of-comfort-55804
Cauchi, Carmel; The Touch of Comfort; George Eliot Hospital Chapel