September 11, 2018
Every time I’m at the CHUM for blood tests and examinations and chemo, I’m given some new form to fill out and more information to read. The forms are always given to me by my pivot nurse, Chantal, and are usually questionnaires designed to track the side effects of the chemotherapy protocol I’m following. Most of the questions are on a gradient—0 meaning never/none and 10 meaning severe—and are concerned with the kinds of things that I would rather never have to think about again, such as constipation, diarrhea, fever, fatigue, loss of appetite, pain, neuropathy, depression, etc.
Chantal, who is perhaps a few years younger than me, is just about the gentlest person on the planet. She’s infinitely patient and always speaks in the most soothing voice. There isn’t a speck of distance in her attitude, or in anything she says, but rather, a deep, compassionate desire to help, to alleviate, to reassure and to bring me within reach of healing, and perhaps something more. Chantal wants to bring me to a state of health, certainly, but also to a state of peace.
Or at least, this is how she makes me feel. As she spends more time by my side, and also with Simon and Christian who have been there with me at the CHUM almost every moment, we are being transformed by her vision of cancérologie (in English, cancerology, though I think it’s used less commonly).
Chantal never uses direct verbs like beat and battle when referring to the many-diseases-with-one-name (because that’s what cancer really is). The word cancer comes up the same way fever or headache or nutrition or sickness do: they are dimensions of an experience that is simply a part living—and staying alive.
I have Chantal’s work email, I have her work phone number, and I have her home phone number. I’m meant to use these any time anything goes wrong or any time I’m concerned with the seriousness of a symptom, such as fever. I try never to invade her private time—her weekends and evenings—and so far, things have worked out.
What a choice she has made, to give such a crucial part of her life to the intimate, very personal treatment and well-being of cancer patients.
Since the beginning of my odyssey at the CHUM, I’ve been given forms to fill out, check lists, pamphlets, booklets and file folders full of “what to expect” information about my illness, its treatment and all of the possible hazards and side effects that may be in my future. It was, and still is, overwhelming. I’ve found it difficult to dive back into it all once I’ve left the hospital.
I did, however, read the small book on colorectal cancer. Every page I turned moved me through the stages, 1, 2, …until I had reached mine. In the treatment section, the first word I read was PALLIATIVE.
I was unprepared for that. It hit me hard. Palliative: a word I associate principally with end of life care. Which is a beautiful, valuable thing, but speaks of a destination that I know I have not reached.
It was still early on, and I hadn’t begun chemo yet, and I felt the scorch of that word as though I’d been branded. Then, I remembered the words of the surgeon who had given me the formal diagnosis: she had simply said “We’re treating a chronic illness now.” This, too, is what palliative means: the treatment of an illness that cannot be cured.
That’s my fate. To live as long and as well as I possibly can with an illness that has dug deep into my body. In this way, I am like men, women and children with diabetes, multiple sclerosis, heart disease, lupus, cystic fibrosis…Our individual situations are not identical, but I do feel that I have joined the company of people who share an awareness of the body’s vulnerabilities, of the constant possibility of suffering, of the medicalization of their lives, of the need for daily courage, and of the great good fortune of being alive.
In my situation, hopefulness can look an awful lot like denial. It isn’t. Before the chemo started, especially, I had low and lonely moments when I wondered whether it wouldn’t be better to keep my bedroom in our new house as neutral as possible. It seemed better not to leave too deep a footprint in my room, or in the office I share with Christian. I wondered if I should stop ordering books online. I realized how silly it was to worry about developing a dependency on Ativan to sleep…It was the least of my worries, surely. I had become a far more subdued version of myself.
This is not realism. It’s fear and sadness and confusion. It’s what happens when these cause us to cut ourselves off, even only briefly, even only in our minds, from the sources of love and support in our lives.
One night, as I lay in bed, I closed my eyes and said: “I trust in love. I abandon myself to love”, and I forced the corners of my mouth upward just slightly, and a feeling of peace came over me.
I repeat this every night.