HOPE ON A PENDULUM

Murray, William Staite; Action and Inaction; York Museums Trust; http://www.artuk.org/artworks/action-and-inaction-8316

Part of the THIS IS THE MOMENT series. 

January 29th, 2019

I got my second scan results, once again, through my sister-in-law who is a radiologist. She received my email at the beginning of her vacation (she doesn’t—can’t—take nearly enough time off), and promised to let me know how things looked as soon as she got back. When she did, I received a very brief email stating that things were “stable”: no new lesions, no growth of existing tumours. STABLE. I immediately replied, asking if that meant that nothing had shrunk, she replied again: yes, stable.

After processing her words a bit longer, I felt myself sliding down into a gutter of sadness. Of hopelessness. It was so precipitous, it was almost like the sweeping downward movement of a rollercoaster.

Wadsworth, Edward Alexander; Souvenir of Fiumicino; Manchester Art Gallery; http://www.artuk.org/artworks/souvenir-of-fiumicino-206329

So much for my bravado. My morale is wobbly and vulnerable. My mind was filled with a frantic salad of thoughts such as:

– “Stable” means the drugs are (already!) no longer having the desired effect on the tumours/

– “Stable” means the beginning of the end, because if the tumours aren’t shrinking anymore, then the second we stop treatment, they’ll spread everywhere/

 – “Stable” means the cancer has adapted; when I got the first scan results that were so favourable, there was a brief period when I thought: “Maybe I’m one of those people who will be “cured”, against all odds, of their stage 4 cancer. But I’m not./

 – Maybe I’ll be dead in a year…perhaps two years…I won’t be part of the future.

I was hurtling down a steep incline, having lost sight of all of the answers to the question: What am I afraid of?

Like mountain climbing when, after a near catastrophic fall, you struggle back up to where you set your carabiner, and you see that you’ve moved well beyond chemo base camp, and that the stakes now feel even greater.

Hughes, Lynda; Light, Hope and Dancing; Victoria Centre; http://www.artuk.org/artworks/light-hope-and-dancing-64368

Then I thought to go online and just look at what the American Cancer Society has to say on the matter. I found what I was looking for under the heading “Managing Cancer as a Chronic Illness.  I read through the sections several times and each time, it was like pushing my mind’s refresh button. Each time, things were slightly altered.

I think that I’ve arrived at a crucial place: I must now accept that stage 4 cancer (barring a medical miracle) is chronic cancer—if you’re lucky. If it doesn’t spread like wildfire. A cancer that you can live with for a while (…to be determined). And living with chronic cancer means several things, including the fact that the life that you had before you were diagnosed is GONE. It will not be resurrected. GONE. Got that?

This was so from day one but I hadn’t yet understood and absorbed it.

Amongst all of the daydreams that sweep things back and forth in my mind was this notion that perhaps, if I was very, very lucky, perhaps one day this life I have right now would all be gone and in its place, my old life—the one that contained my work, my physical strength and stamina, my greater independence, my ability to travel, and the plans I shared with my sons about the future—would return. That I would have a life after cancer.

I know differently now, and should have sooner, except that, apparently, my mind relinquishes its patterns reluctantly, and holds onto its schemas the way very small children cling to their parents. I live and hope to keep living with cancer. That’s my new narrative.

Organ, Bryan; Pendulum Number 3; Leicestershire County Council Artworks Collection; http://www.artuk.org/artworks/pendulum-number-3-82559

Time is breaking down my resistances, and I can now see that I will be able to live with cancer for many months and, perhaps, years. This means a life lived close to hospitals, to medical care, to drugs and treatments. Regular medical intervention and supervision of my cancer and health, till I die. Freedom within those parameters.

This all coincided with bad news we received. Heartbreaking news, concerning a close member of our extended family; someone we haven’t known all that long but love deeply, who, at 53 years of age, has also been diagnosed with stage 4 cancer of a different type, but who had the news thrown at her in a manner I consider violent and without compassion.

These coinciding events—my scans and her scans—sent me reeling, creating such a mournful feeling in me.  I have lived seven more years than she. How can I not feel rent by this news?

It seems as though there will always be broken pieces to pick up and make room for in the mosaic of my life.

Yesterday, I was back at the CHUM for my routine pre-chemo tests, and spent a while with my oncologist, Dr. Aubin (whom I’ve mentioned before), who heads the clinical trial I’m participating in. I was waiting to see her before writing any of this to you.

Bentley, James; Helping Hands, Cancer Research Sponsored Walk, Buckley, 1st October 1994; Flintshire Museums Service; http://www.artuk.org/artworks/helping-hands-cancer-research-sponsored-walk-buckley-1st-october-1994-180360

She greeted me with a smile, and a cold, which she thinks she caught during her flight back from San Francisco where she and her team were presenting their work and findings so far. She was full of enthusiasm about the outlook of research in her field.

She examined me, and then we discussed my recent scan results, and when I mentioned that I was disappointed, she looked at me and said no, no, that she was very happy with the results; that the cancer is being controlled and that there was, in fact some modest shrinkage, and that all was well. That these sorts of fluctuations were to be expected. And she said it all with a broad smile, so I believed her, and told her that I have finally understood that my disease is chronic. That I know what this means. And she nodded, and smiled.

Before we parted, she said to me that working in oncology is a real challenge, but that patients like me made things much brighter.

It’s hard not to feel buoyed by such words, and so I shall try to knock some sense into myself and repeat to myself that the future is unwritten, and I shall try to narrow the swings of the pendulum to which my hope is tethered.

Lassen, Jeanette; The Road to Health; NHS Lothian (Edinburgh & Lothian Health Foundation); http://www.artuk.org/artworks/the-road-to-health-184508

 

 

 

 

 

 

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

 

 

 

EXPANDING CIRCLES

Dodd, Francis; Willow in Winter; Manchester Art Gallery; http://www.artuk.org/artworks/willow-in-winter-204869

Part of the THIS IS THE MOMENT series

December 31st, 2018

2019 will be here tomorrow. Am I happy to turn the page on 2018?

It’s a question that’s come up many times these past few weeks and though the people asking it actually pause and wait to see how I’ll answer, for most of them, it’s really just a statement. There’s no question mark. Good riddance, is what they mean.

Despite the obvious life-changing events of 2018 that dismantled my own existence and transformed it into both nightmare and epiphany, I’m never sure that turning the page on a year is cause for celebration.

There’s something about taking even a second of life for granted that prevents me from wishing time away, but in practice, just like everyone else, my mindfulness is set adrift by the slightest wind or whim.

That’s what’s brought me to this keyboard today.

I should be at the CHUM right now. I was originally scheduled for my bi-weekly pre-chemo tests today, followed by 5-6 hours of chemo on Wednesday. But I’m not going. That’s my decision, made after persuasive prompting from Simon, and a deep, deep fatigue and weariness that has settled in me this December. When Simon and I realized that my next round would require me to travel to the CHUM on New Year’s Eve and then again on the day after New Year’s, we instantly agreed that this mustn’t happen, and that I should ask that my chemo be postponed to next week.

A one week reprieve—that’s all I wanted. But it feels like so much more. My hands aren’t healing enough between bi-weekly rounds of treatment, and so they always hurt; my energy levels barely make it to 7 out of 10 before I’m back in treatment; my morale is being affected by the 14-day box I live in.

The season is icy and dark.

Walsh, Claire Cooper; Realms of Possibility; Art in Healthcare; http://www.artuk.org/artworks/realms-of-possibility-184111

January 2nd, 2019

I had dinner out last night with my Mum, her partner Claude, two of his three grown children, and my sons, plus Anne, my daughter-in-law. We got together on the West Island, as is almost always the case, forcing Claude’s family—city folk—to come to the burbs, which they do, graciously, almost every time we invite them. We were at La Maison Verte, where the food was delicious and the company was, well, family.

I spent New Year’s evening sitting across from my mum and Claude. My mum was in good spirits, so the conversation flowed. They’re both 84 years old, and doing well, but these days, of course, it’s hard to talk about most things without the shadow of my cancer there, poised to dampen everything. Then, somewhat to my surprise, my mum began to talk about the grim reality of growing old, and about the fortitude and the grit required to deal with the hard parts of each and every day. I think she meant the incremental losses that are inescapable: aching joints that lessen mobility and make this winter’s ice even more of a nightmare; eyesight that is not as reliable as it once was and has required cataract surgeries; the lingering side effects of cancers, multiple treatments, illnesses and the surgeries that each of them has dealt with, and which have sapped their resilience.

Beatty, P.; Season of Love #2; Art in Healthcare; http://www.artuk.org/artworks/season-of-love-2-184297

It’s such an interesting perspective from where I sit. I couldn’t help thinking that if the miracle occurs, and my cancer retreats for a good long while, then I may then have the privilege of entering the daily survival zone my mum and Claude inhabit.

What came to mind next was something I’d been thinking about for a few days, something that turned time on its head in an entirely different way. Looking too far ahead, when you have stage 4 cancer, is fraught with painful traps.

I’ve been observing my beautiful grandchildren, Penelope and Graeme, who are like the ocean, or a primeval forest, or a clear night sky in summer, or grand, symphonic music, or perhaps all of these at once. They are sublime creations, impossibly wonderful, painfully lovable and constantly changing into something new, and more, and completely fascinating. And of course, I can’t help but wonder how long I will be able to know them and follow their metamorphosis into adulthood. And I thought of my own mother who has had the immense privilege of seeing her grandchildren—all five of them—reach the ages of thirty-five (three in all), thirty-two and twenty-seven. She knows who they are, who they love, what their professions are, and what sort of humans they have become. She carries this knowledge inside. They have added rings to her life—expansions of love and joy.

Grant, Keith; Sunrise over Spitzbergen; University of Birmingham; http://www.artuk.org/artworks/sunrise-over-spitzbergen-34711

I’m not even sure I’ll see Penelope turn ten or Graeme turn eight. Who knows? That’s the thing. I don’t have those years secured away and well-lived in their company. But my mum does—and she has even been able to know and love her grandchildren’s children (once again, all five of them—so far). Another ring added, expanding her life.

One mistake that these thoughts twist me into making is to hold back from Penelope and Graeme, calibrating the expression of my love for them, so that my disappearance from their lives won’t cause them as much pain. Cancer treatment has kept me at the hospital an awful lot, lowered my energy and caused me to be less present anyway. I can’t run around and be the grand-maman that I was. Sometimes, I wonder if they feel the decay emanating from me. Why not recede, ever-so-subtly, from their lives?

These are awful, stupid, self-protecting thoughts that have strong roots, and persist. I struggle with them. I forget that love is a growing, expanding emotion.

Haughton, Benjamin; Dead and Live Tree; Portsmouth Museums and Visitor Services; http://www.artuk.org/artworks/dead-and-live-tree-24321

On Christmas Eve, this theory of love was put to the test when I went to join the Daoust clan, my husband’s family, for our annual bash. This year witnessed the best attendance ever, and we were well over thirty people celebrating. But this was also the first Christmas after my separation from Sylvain–their blood. It says something about my Daoust family that this made no difference to them, and that they were very anxious to see me, as I had disappeared since late June.

I thought I would be skittish, but as the day and hour approached, I found myself so looking forward to seeing each and every one of them, and swore to myself that I would share this feeling every chance I got. And I did. It was so easy to smile and to linger in the long, warm, encircling embraces I was offered, so many of which qualified as bear hugs. My Daoust loved ones smiled and asked me concerned, pointed questions, and then moved on to just being there, all of us together.

McDade, Steven; Network; Southampton Solent University; http://www.artuk.org/artworks/network-17290

I’ve reminded myself many times that I’ve known them since I was barely 17 years old; that I’ve been through so many happy events and tragic moments with them—that we’ve grown up and grown older together, and that our children are reaching further into the future…Ring after glorious ring.

On Christmas Eve and at New Year’s supper, there were so many smiles. There was such sincerity in what was said and how we touched each other.

There’s a lesson here for me. I’m an introverted person and this need of mine to retreat is not always the way to go. Saying “Here I am”, with open arms this year, allowed me to recognize the steadfast circle that surrounds me, to see all that it embraces and to understand just how limitless is its ability to expand.

(I trust in love. I abandon myself to love.)

Farquharson, Joseph; Dawn; Walker Art Gallery; http://www.artuk.org/artworks/dawn-97077