MOVING BETWEEN SERENITY AND SADNESS

Bennett, David; Slipway 1; ArtCare, Salisbury District Hospital; http://www.artuk.org/artworks/slipway-1-64745

March 23rd 2019

 Yesterday, I spent a part of the afternoon beginning the process of resigning from my position as a French teacher in adult education for the CSMB (Marguerite-Bourgeoys school board). The woman on the phone told me I should receive the papers in a week or so. The next step will be filling out the documents required to receive my small teacher’s pension. It’s very small because my professional life only got seriously started in my forties—though everything I did before that was leading me to that profession. I don’t qualify for my federal pension for five years…

It isn’t nearly enough. It’s a pittance that will help pay for food, and maybe the odd bill, but will mean being dependent on others, or else—and more realistically— running through what money I have left from my separation and the sale of our house—in effect leaving nothing behind for anyone.

It’s so startling (and ironic!) to think that there could come a day when I’ve outlived my ability to support myself, even in this group living arrangement that I have with my son and soon, our friend Cindy.  And even with cancer. I could find myself rooting for death rather than indigence, or, more honestly, being utterly dependent on my children, which is not an acceptable option.

Millet, Jean-Francois; Gust of Wind; Amgueddfa Cymru – National Museum Wales; http://www.artuk.org/artworks/gust-of-wind-116875

There are notes of melodrama there, because the people who love me would never see it that way and will probably feel like bonking me on the head when they read this, but…there’s truth here too. I can’t work for at least two years, and if I’m still alive at the end of the clinical trial, then Dr. Aubin, who leads this trial, told me point blank that she’s prepared right now to sign any document which states that I should never work again, because, well…I think she knows that magic rainbows aren’t awaiting me at the end of the two year trial, but she simply said –remembering that I’ll be 62 by then (using the future tense feels lovely) : “No, I don’t like the idea of you being submitted to the stresses of teaching,”  (which include driving all over the place) “I think you qualify for a disability pension, and I’ll sign a paper right now that states that you shouldn’t work anymore.”

My age is a factor in her decision-making process. She’s hopeful of extending my life and knows what could, and won’t, help me to reach that goal. And I probably shouldn’t write this, but I believe that when I walk into the small examination room she uses when she comes to the 14th floor of the CHUM, and we sit and talk and plan out the next treatment, she’s happy to see me, and has grown fond of me, in a professional way. I think she’s rooting for me.

I felt immediate relief, which was in part because she understood the demands of what I do. Did.

And also, because there’s so much struggle in my life right now that adding to it, even only on a list of possibilities, is too much to take in. But I still haven’t begun getting together the paperwork for a disability pension. The next step.

Schwarz, Hans; Lisa Dunwood, Teacher; Girton College, University of Cambridge; http://www.artuk.org/artworks/lisa-dunwood-teacher-195231

As I made the phone call yesterday, a workbook was sitting on this table where I write. A terrific book for learning French, published in Quebec (part of the Par Ici series), that I began using a few years ago when it first turned up. I can’t remember how it got there, but seeing it and leafing through it helped me fully appreciate the finality of never teaching again. I loved that book, despite its shortcomings (there are ALWAYS shortcomings: that’s what the teacher’s for). I love all the memories associated with it, the classes where my students were caught up in role play: one, the building superintendent and the other, the tenant with a broken kitchen faucet; or one, shopping for posh clothes being served by an obsequious sales person; or my beginners, struggling to ask questions about an Airbnb lodging they were looking to rent…

Just some of the things that have ended in my life.

It’s a long and precious list of roles I no longer play, responsibilities I no longer have, people I no longer see of whom I had grown very fond, teaching them once, twice, three times a week for 2, 3, 4 years… Ben, Armina, Peter, Christine, Arthur, Amira, Veli, all of my Filipino gentlemen…So many over the years that I cannot begin to name everyone…Day classes, evening classes…Many still Facebook friends.

And strangers I will never meet. Humans who might have been, but won’t be my students. I won’t have the chance to learn from them. A part of my future, which seemed so predetermined, now amputated.

I was so changed by my experience of teaching, which opened me up to myself and to others; which helped me feel so much better about the human race; which awakened me to the richness of otherness.

There are times, here in Hudson, when I feel myself shrinking. Losing confidence, losing my sense of purpose. The Incredible Shrinking Woman. No more Elastigirl. Leaving teaching was as far from my thoughts as would be leaving writing. I just assumed I would do both until…I couldn’t. Ah. There it is.

But I can still write (even though my eyes are bothering so much as a result of chemo that I’m forced to use reading glasses that are almost double my prescription (from +2.00 to + 3.75! and still, I don’t see clearly).

***

Over the past seven months, I’ve adapted to the routine of going to the new CHUM so often, and to the older Hotel-Dieu buildings too. I complain about the repetitiveness of it, and worse, the boxiness of it, but there are elements of these experiences that are almost ritual, and they’re soothing.

Getting Monday’s pre-chemo tests and examinations done quickly, and leaving the hospital early enough to make the 12:30 pm train home is the ultimate goal. It’s never more than half full, and it gets me on track (literally) to be home by roughly 2:15 pm.

The train is my principle mode of transport. Though I’m guaranteed free parking at the CHUM. I’ve never used my car to get there. Instead, I leave it where Simon teaches, in Sainte-Anne-de-Bellevue, at the train station.

The train at Montreal West Station, March 25th 2019

The train never failed me this winter. Not once. Not even during the worst snowstorm of the year. On the way in to the city, because my station is one of the first on the line, I’m lucky enough to get a good seat and settle in. But this is morning bustle time. People are off to work and to school. Most seem to carry with them a sense of mission. A purpose. Some are munching on their ersatz breakfast, while others, those with earbuds, have disappeared into their phones or tablets.

Returning home always feels different, but especially if it isn’t rush hour. The train is peaceful, and I love to ride the second floor—the quietest space. It creeks, and seems to rock more, left to right, at these times, in a gentle motion that soothes and settles everyone down. From my perch, I watch the strip of world that was carved out when the tracks were laid, some of them more than a century ago.

I watch Westmount and Montreal West roll past my window, showing ravines, a golf course, the ugly backsides of cheaply constructed and ramshackle garages and small grocery stores, and all of the big old gorgeous houses that passed for single-family dwellings back then, with attics and additions poking out unexpectedly.

On the train, during a snowstorm, February 2019

I love leaving Montreal’s edges behind, and reaching Lachine, Dorval, and the stations of my former home—three in all (the most!)— Pointe-Claire. They line the highway, and the houses have shrunk in size (the up-market homes are of course near the lake or in posher neighbourhoods).

But as we push westward, the cookie cutter suburbs begin to lose their geometry, and where no businesses and warehouses have yet been built, there’s still open fields, and finally, the farmlands of McGill’s MacDonald campus.

A few times, I’ve ridden the train right off the island, all the way to Vaudreuil, and once, Hudson itself (the train only stops in Hudson at 6:50 am and 6:40 pm), but they’re still working out the kinks in their system, so I’ve become partial to Sainte-Anne.

Riding the trains connects me with my past. It evokes the thrill of shopping trips downtown with my sisters or with friends when we were just thirteen or fourteen; and the years when I was a student at Concordia U, then McGill, and then finally l’Université du Québec à Montréal (UQAM), always preferring the train to anything else.

I hopped the train to go buy my wedding dress downtown. I hopped the train to attend Christian’s performances at FACE high school, and later, as a professional actor. I hopped the train to attend Simon and Jeremy’s graduations from Concordia (having become a biologist and an engineer), and later, Christian’s too…

On the train during a snowstorm, February 2019

These days, when I look out the window from the commuter train, I don’t have the sense that it might also take me to Toronto or New York, as it has in the past. I try not to see it as a means of going away or getting away, but try instead to appreciate how lovely it is to move back and forth between the places and people who are helping me to stay alive, through their love and care, making the serenity worth the sadness.

 

 

 

 

 

 

SECOND SKIN

“…the human being to lack that second skin we call egoism has not yet been born, it lasts much longer than the other one, that bleeds so readily.”
― José Saramago, Blindness

Robertson, Carol; Second Skin; Bodelwyddan Castle Trust; http://www.artuk.org/artworks/second-skin-178299

 

I’ve arrived at a place of discomfort.

Every day I’ve lived since last July has in some way been about me getting through the day, getting to tomorrow, and then the next day; and by extension, everyone around me has been caught up in helping me get through to a future beyond now, beyond this week, or this month, or year…

Making good meals for me when I’m useless (an all too frequent occurrence); shuffling schedules so that I’m not alone at chemo; remaining open and patient with me when my filters break down and I’m whimpery, and discouraged; adjusting their lives around my needs…These are just some of the things that my sons (especially), wonderful friends and family do for me every day.

How self-centred I have become.
Forced into it to some extent, perhaps, but indulging myself too.

And all of these words I’ve poured out to you—more than 35 000 so far—have they not principally been about me highlighting me?

Higgins, Tony; Skin Deep; University of Stirling; http://www.artuk.org/artworks/skin-deep-127895

While my own skin is showing the battle scars of cancer treatment, a second, invisible one is slowly enveloping me. It’s the skin of self-centredness. At least, this is an apprehension of mine that’s been there from the very beginning of this unchosen journey.

In part, I think, this withdrawal into myself is a survival mechanism. I’m not sure how much I can do. I’m not sure what will happen to me. I’m not sure what it means when I suddenly have no energy and my legs start to shake beneath me, or tears pour from my eyes as easily as I breathe. Self-absorption, my second skin, is in part controlling the flow of what life demands of me. But still… It has made it all too easy to hide away in the two-week (one in chemo, one off) life cycle that I live inside.

***

Last week was spring break for my grandchildren: Penelope, now 7, from grade school, and Graeme, who turns 5 in April, from pre-school. It was study week at John Abbott College, so Simon had more free time to enjoy (though he still had tests and lab reports to mark and things to write), and I was not in a chemo week. Jeremy  was away on business in Hong Kong and Japan, leaving behind an unfillable gap in his young family, in spite of the fact that Anne is an extraordinary life partner and mother. For Christian, unfortunately, it was business as usual: work –work—work—work.

This created an opening. They were home! Anne was happy to have company and support. And so, she and Simon busied themselves making plans to fill the days with activities the kids could look forward to.

Early in the week, we would go play with them all day at their house. Then, on a different day, we would take them to the movies. Next, they would come to our house in Hudson and play all day (from 8 am to 7 pm!). Finally, upon their papa’s return from Japan, we would go celebrate Penelope’s birthday over pizza at a local restaurant.

Our love for Penelope, Graeme and their parents is such that just being near them makes us feel happier. And yet, I see how I have pulled away from them since my diagnosis. Or maybe it’s truer to say that circumstances have made it hard to be with them the way I used to—circumstances which include my cancer and treatment, but also the simple fact that they are both at school and have busy, happy lives and a full calendar, which doesn’t always match up well with my physical highs and lows.

It’s been as though an invisible chord snapped when I learned how sick I was. They say that dogs can smell cancer in a person; I wondered if perhaps young children have a similar sensitivity to things that are going wrong. I didn’t want Penelope and Graeme to sense this…decay when they were around me, and I was feeling so changed and so damaged.

unknown artist; Old Lady with Two Children; Bradford Museums and Galleries; http://www.artuk.org/artworks/old-lady-with-two-children-22343

Last week, I played with my grandchildren with pure joy—something I  hadn’t done for weeks and weeks, because these experiences opened up a melancholy spot inside me: the whisperings of uselessness; of being superfluous and unable to follow the stream of their lives (while everyone else entered and exited their daily existence so effortlessly). I’m speaking of the loss of the kind of intimacy one can create with children that is tender and trusting and of such honesty that it replenishes the soul and reminds us of a different world—a minute by minute world—in which all good things are possible.

On the day they came to play at our house, for some weird and frustrating reason, I was exhausted and having trouble keeping my eyes open, almost from the time I woke up. It was as though magnets were pulling my eyelids shut. This has never happened to me before and all I could think of was going to take a short nap—maybe that would snap me out of it!? But Graeme was by my side, wanting to play and do all of the fun things that are possible here, and I would have been mortified to disappoint him, and so I reverted to closing my eyes for a few seconds at a time–taking the sneakiest, shortest micro-naps every chance I got. And at the end of one of them, there was Graeme, staring at me intently with the most accepting smile (given the circumstances), saying: “It’s okay, Grand-maman, it’s just your sickness.”

 ***

The love and well wishes that have rained down on me since last July, and especially because of this blog, have been a daily source of strength and inspiration for me. I cannot overstate this. Maybe it’s the magnitude of it that has alerted me to my unworthiness. It is love overwhelming. It is kindness and support beyond reason.

Thank you.

Thank you.

 My life depends on the willingness of my loved ones to do all of the thankless, repetitive and life-invading tasks that cancer throws in their path.

What can I do besides accept their love and attempt to return it to them in gratitude whenever I can, and understand that we are all called to love in every way possible?

Making amends…Making it up to them…

These turns of phrase that come to mind imply indebtedness. If their love has left me in debt, then I may not live long enough to repay each and every one of them.

Still, a way to lighten the weight of my second skin must surely be found in being kinder and more forgiving of every perceived wrong, no matter who it involves; being generous of heart and letting go of past slights and hurts; practicing more empathy every day, so as not to forget those dark moments that I am responsible for; and being more open to accepting love that I may never be able to return in equal measure.

It’s a wonderful feeling to owe one’s life to so many.

The Evening of all Days, the Day of all Evenings by Anselm Kiefer, 2014

TERMINAL

Not long ago, I was with a bunch of people I love. We were celebrating a birthday and it was smiles all-round.

One of the guests, who has been struggling with serious and rather frightening health issues, had just arrived, and mentioned the eternity it seemed to be taking to get the proper medical tests and procedures done here, in Quebec. I couldn’t help but say: “Well I’ve been so lucky at the CHUM and received such good care.”

And my interlocutor answered right back: “Yes, but you’re terminal.”

Phillips, Tom; Terminal Greys IV-VII; Arts Council Collection; http://www.artuk.org/artworks/terminal-greys-ivvii-63991

* * * *

I feel like I should leave a space on the page. It represents a pause. How time seemed to freeze just long enough for me to gasp silently.

Right up until that moment, I was feeling confident and upbeat. In social situations, it isn’t ever possible to make my cancer disappear. Time is required. People have to get used to me and my short white hair (but with blue eyes!), and ask their questions about how things are going in chemo (which I appreciate), and then, the cancer thing is allowed to go sit in a corner and take a break so conversation can move on—until someone calls it out again (sometimes that person is me).

TERMINAL. It was the first time that word has been used around me. And though it was spoken with not a micron of malice, still, it made me wobble, to have it thrown at me like that. It was like being splashed unexpectedly with black paint at super speed. I felt tainted. It reduced me to one of the doomed soldiers of the gaunt chemo army.

This all happened in a split second. I remember thinking, in a shaky inner voice: “But we’re ALL terminal.” (that’s the deal in this one life we have).

I haven’t heard the adjective used at the CHUM, or on my blog page where so many cancer sufferers and sympathizers come to leave comments.

* * * *

I’m  a word person. I think it’s the second time in my life that I’ve actually said this in a formal way. The first time was in a yoga weekend workshop, years ago, when we were asked to repeat a mantra over and over and I said to our instructor: “I’m a person of words, and I’d like to know what it is that I’m saying.”; and he answered with a “Pfff! A person of words” and a backhanded swipe at the air, meaning the sounds, the vibrations of Sanskrit are what matters, and understanding wasn’t necessary. That may be the day he lost me. Right at the beginning.

Language is my passion, my fascination, my friend. So, it isn’t a surprise that writing this blog has been such a hopeful, buoyant experience.

McDade, Steven; Language Flow; Southampton Solent University; http://www.artuk.org/artworks/language-flow-17287

Language has its own alchemy. It transforms words into love, understanding, fear, wisdom, confusion, suffering, compassion, anger, motivation…and hope. During my journey with cancer, it has been a universal elixir, allowing me to connect with people all over the world.

The oncologists and other members of the medical team (radiologists, chemo nurses, pivot nurses, pharmacists, psychologists…) with whom I’ve established such crucial relationships since last summer, have perfected the language of their trade, and the very best never falter.

Even the staging of my cancer was done with care and circumspection. Once “Stage 4” was determined, it was almost never used again in my presence. When I sit in front of one of the research team’s oncologists, every second Monday morning, the calendar is discussed—my chemo dates and upcoming blood tests and scans—but I don’t know that we’ve ever talked about finalities.

There’s a softness with language there. Those who work in oncology have learned to speak that way. They don’t say exactly when my chemo will end (there’s a certain, immutable number of cycles I must go through in this clinical trial, but some have been interrupted because of side effects and so I’ve lost track), but they carefully walk me through each one. They won’t say what treatment(s) will follow chemotherapy because they know to wait and see what will be required then…

Ivanisin, Katarina; Untitled; St George’s Hospital; http://www.artuk.org/artworks/untitled-87521

When you focus on NOW, you don’t need words like terminal and stage 4…but you do find yourself using the word chronic.

My hope is that when my chemo is done (which I think will bring me to next fall), I will have reached a terminal of a different kind, where I will hop the next treatment train that will, I hope, allow me to travel a good distance more. I don’t know how long my trip will be, and don’t expect my medical team to even attempt a guess.

This is, in fact, how most of us live every single day, travelling as best we can, though cancer patients may be the most grateful of all the passengers.

Wilgos, Brian; Back Again; National Railway Museum; http://www.artuk.org/artworks/back-again-9377

 

 

SUFFERING

Part of the THIS IS THE MOMENT series.

February 12th, 2019

Bomberg, David; English Woman; Ben Uri Gallery & Museum; http://www.artuk.org/artworks/english-woman-191301

Though it feels like I have to just hang in there through chemo, the fact is that I can’t and shouldn’t exist in some kind of holding pattern. I have to go and live as fully as I can.

This may be a peak. How I feel right now could be the best I’ll ever feel again…

I can’t say—I don’t know.

What I know is that there’s the possibility of so much more pain; of pain so pervasive that life narrows, and you enter a tunnel and for a while, it’s as though that tunnel has no end.

; Physiognomy Showing a Man Trying to Control Himself Under the Duress of Pain; Wellcome Collection; http://www.artuk.org/artworks/physiognomy-showing-a-man-trying-to-control-himself-under-the-duress-of-pain-239886

Someone I know, care about and identify with effortlessly, is suffering in this way right now. Or she was all day and night yesterday, when I could think of nothing else. I won’t name her. Her torment is as real as it is private.

The cause of her suffering is the cancer that has invaded her bones. Yesterday, she reached the point where her morphine no longer made a difference. I wasn’t with her, but I know that she is tough, and willful, and that her agony had to have been…unspeakable.

Knowing that someone is suffering the way she was, and has been for days, turned me inside out. Lying in my bed last night, I felt connected to her through invisible fibres that functioned like nerve endings.

Those who love her are all tethered to her pain, and every thought/prayer sent toward her also pulls on that part of the tether that is connected to us.

It reminds me: do not take a second of wellbeing for granted.

There is suffering everywhere—cancer, disease, are not its only claim—but this pain has a face, an identity known to me and everyone close to her; and that’s why it’s so easily sensed by all of us.

What can I do? What should any of us do?

Be mindful of that suffering. Don’t dare push it away when that connection is painful. Share it in spirit. Be present to it. Ache for the one suffering. Bear witness to it. Send love, send grace…

And then yell and howl publicly in proxy pain, till the palliative medical team gets it right. Till the loved one’s nerve endings quiet.

There IS a cessation to suffering. At the end of that tunnel is light and deliverance.

Atkinson, Conrad; Golden Landscape with Pain; The Wordsworth Trust; http://www.artuk.org/artworks/golden-landscape-with-pain-143028

 

THE WORLD, SHIVERS AND BOOKS

 

Part of the THIS IS THE MOMENT series.

1. OPEN TO THE WORLD

Sunday, February 3rd, 2019

It’s a cold Sunday morning and I’m sitting in what’s become “my spot”, that is, at the dining room table that looks out onto the back yard. It’s beside the sliding door, and I favour it because regularly enough, it’s here that a warm beam of sunlight enters the house, and for an hour or more, I have not only the light, but its rays upon me.

I’m able to spend lengthy stretches of time here. When Simon and Christian are off at work, it becomes a quiet, open space. There’s just me and my laptop, which, given the circumstances of my life, is the door that I can throw wide open to the world—despite the side effects of chemo I’m dealing with on any given day—and enter it, travelling as far as I wish, messaging, writing to or chatting in real time with the people I know and love, but also, thrillingly, with those I have met through my sickness and my blog, leaving my body behind. What would my view of life be like without this aperture?

(Oh! I’ve just been interrupted by the song of blue jays up in the pine trees in our yard and I even spotted one. It’s the first bird cries I’ve heard in months. They’re not the sweetest species, but on this cold winter afternoon, their vitality’s welcome!)

As the weeks and months have passed, I’ve never been more aware of the importance of this screened device that I type on and use relentlessly to connect with what otherwise lies outside my reach. Winter has also placed walls between me and the world as surely as my cancer treatment has.

Twenty years ago, I would have been dependent on the telephone, that very narrow channel of communication. I could have exchanged in real time, certainly (though I would doubtlessly have left innumerable messages—it was the heyday of answering machines), but along such a thin line of human contact. Banter mostly. Voices filled with attempted cheerfulness, worry, love, concern and the mundane news of everyday life that would have been my interlocutors’. But never seeing the faces that might have betrayed much more—a richness of pain and love.

On my laptop, I give and receive as lightly, as impulsively, as much as I choose or as much as I’m invited to offer. Internet is my means of travelling, and this year especially, it has taken me beyond what I thought possible. I think it’s saving me from the despair and depression that I might have fallen into.

Writing, especially, has come to my rescue. While I’m caught up in it, there is always an exchange happening between my thoughts, and you. Without you, writing would quickly lose its meaning. I’m sure of it. I’m not a diarist. I write pages that may or may not be read by you but are nevertheless meant for you…whoever you are. You were and always will be the people I know and love, and also someone I know less well but would like to know better. But I’ve also come to realize that you may be someone I just met on one of the myriad, tiny bridges of words built on my blog. I barely know you, and yet you have left behind words of appreciation and mostly, a piece of yourself.

My warm corner

2. SHIVERS

 Wednesday, February 6th, 2019

 Like so many chemo patients, I’m afflicted with shivers. They come and go in waves with a constancy that assures that they’re always a factor in my daily life.

It isn’t a coincidence that the sunny corner where I sit and write is directly in front of an electric heating panel. This is one way I’ve found to postpone the inevitable—at least from fall to spring. It’s as though any degree of cold in the ambient air finds me. It works its way into my feet despite the fact that I wear huge, thick socks bought at Chapters (the fuzzy knee-high ones) and l’Équipeur (the thermal ones).

This morning, I’m still in my soft pajamas and super-socks but, sensing this wouldn’t be enough, I’m also wearing a large, loose Carraigdonn 100% merino wool sweater, made in Ireland (I checked the label), that’s my mum’s. A previous chemo patient herself, she came to my rescue with it last fall, knowing it would be needed. I thank the sheep who contributed their miracle, all-weather wool to it. It’s like putting on a heated woollen tent (merci Maman xo).

Shivering reminds me that my body is under siege and that it’s having to expend energy fighting on many fronts at the same time, the chemo killing parts of me while all of my body’s systems kick in to repair, restore and remove the wreckage. It reminds me of my frailty and vulnerability; how quickly my battery loses its charge. It makes me feel old and compromised.

My shivering is a visible sign that my sons pick up quick as lightening, filling the den with blankets and covering me up while we watch Netflix together. Simon also mastered the use of the slow-combustion Napoleon stove that’s in the den (which is still allowed in Hudson), where with a wood fire only, he has succeeded several times in raising the room temperature to a thermonuclear 30 degrees Celsius. The irony is that once I’m under those blankets and all heated up, it’s almost impossible for me to get up and go to bed…such is the shock of re-entering other, cooler parts of the house.

But the shivers and my circumscribed life with chemo have allowed me to luxuriate in the most delicious and self-indulgent ritual: the late morning bath. You see, showering is rough. No matter how hot I set the water, or how warm the bathroom is when I enter it, I can barely bring myself to pull open the shower curtain and step out to face the wall of cooler air that greets me once I’m done.

But a bath…Ahhh…I fill it right to the overflow opening, lie down in the hot water and marinate till every calorie of available heat has migrated into my body. This ritual came about as a result of the 5FU infuser that I wear from Wednesday chemo to Friday afternoon. Bathing was one way that I managed to wash without getting the infuser or the port-a-cath in my upper chest wet. The fact that I was as warm as a foetus while bathing was a sweet discovery. Until now, I don’t think I had ever taken a late morning bath. Lying there, I’m reminded how alien my life has become; and then I try to savour every sensual moment of the experience. I’m sick. I’m in treatment. My present life is almost unrecognizable to me. And yet, to be in the very warm water—in a quiet, safe and peaceful space where I can close my eyes and simply breathe, or else let my mind wander and start writing things in my head, or face my own, private fears and truths—is a very fortunate oasis, but also an indication of my life’s contraction.

Detective and Mystery novels at home

BOOKS

When we first moved into this new house in Hudson, we—Simon, Christian and I—brought roughly a hundred “smallish” boxes of books, which we stored in the basement while we settled in. But the idea, The Plan, was always that we would turn the living room into a library—a dedicated reading room—and merge our collections.

It meant building ten or more floor to ceiling IKEA bookcases (Simon’s doing, with his friend Isabelle), and then systematically emptying every box, sorting through their contents and placing the books in some kind of order (we settled for detective and mystery in one corner and everything else—fiction and non-fiction—together, alphabetically, by author, along the main wall). Just days before Christmas, the shelves of our reading room were finally almost fully garnished.

Some of our books

It’s a beautiful room, and our favourite. It’s the room that we all imagined when we spoke of moving. With very few exceptions—one being all family photos and paintings, but especially photos of my grandchildren—books are our most beloved possessions. I’m not exaggerating when I say that books, in ways too numerous to count, have made us, and provided us with a third common language.

Since my “liberation” from normal life and work, I’ve caught up considerably in the reading department, mixing novels and non-fiction. Reading’s been a great consolation—or should I say compensation? But the shadow of chemo has reached this part of my life as well, as once again, good ol’ 5FU, the chemo drug that seems to have it in for me, is affecting my vision by drowning my eyes with defective tears, then drying them out and irritating my corneas, to the point where the headlights of cars at night appear to be coming at me like quasars, and even in daylight, everything I try to read (including this laptop screen) is blurry. And despite the assortment of drops I use, my vision seems to be getting worse.

Quasar

I won’t give up reading, even if I have to use a magnifying glass. Books are other worlds, other people, other voices, other’s dreams, other’s stories. Book are truth. Books are a shelter and an escape from our own pain, even if only by leading us into the suffering of others. Books are joy, and lightheartedness. They are wisdom. They are the repositories of billions of word bridges to each other.

Having time to read during my life in treatment gives me solace. I won’t give up books.

Not too long ago, as I was thinking of this piece and admiring the lovely library right here, next to where I write, I realized that there are still so many books on the white shelves that I haven’t read. Some come from Simon and Christian, but many are books I bought myself, after seeing a great review or wanting to read more of a writer I’ve just discovered and loved. So, I acquired them, and they are my trove. Our trove. I’m not sure how many they number in total, but there must certainly be fifty or more of them…perhaps as many as a hundred or more…

The question that struck me and that has haunted me since is: will I have time to read them all? Amongst all of the books at the library and those being published every day, those we have here represent such a small proportion. But it’s possible that I will leave many of them unread. Counting down my days in this way is dark, I know, and yet…and yet there’s also something immensely comforting and even subversive about measuring my lifespan by “books read”. As though I needed the motivation. [insert my smiling face here]

 

 

 

 

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