Written On the Body, September 8, 2019: “The Good Patient”

It is now one year plus one week that I moved to Toronto — a decision I have never regretted, and still feel good about. It is wonderful to have caring support in this illness — and also to enjoy my life with Roger. I am glad we made the decision to live together before I got sick, when we both felt free to make this decision when we thought we had many years ahead. (And still might… or something else might have happened suddenly, to either us.)

It is also 3 days after my sixth chemotherapy IV treatment. At the end of this one, I will have another CT scan to re-assess the situation. I felt full of energy and good cheer yesterday (unusual so soon after an IV), but today have slipped back into some fatigue. Hopefully, that will pass as the days go on.

I have been thinking about what it means to be a “good” patient. Partly compliance with the procedures — but that is too passive on its own. I think, and my experience shows, that it is important to ask questions, to understand what is happening (as much as possible), to be engaged with the process. I had a bit of practice with this about 15 years ago, when I had a “bulging disk” in my back and had to spend 6-8 weeks recovering: not long, as illnesses or injuries go, but enough time to learn to listen, slow down my life, accept what was happening, and find ways of healing, using medicine and physiotherapy, and also finding my own inner ways of healing.

It certainly helps to have trust in the doctor’s skill, compassion, and humanity, as I do; I am fortunate to have this kind of doctor, and all the medical, nursing, and support staff at Princess Margaret (at least those I have met) have these qualities. It is good to tune into your own body, and to make choices when you can; for example, last week I was due to have my teeth cleaned (“a gentle cleaning,” the doctor had emphasized) but was able to cancel the procedure at the last minute, when the dentist and hygienist asked if I was comfortable doing it right then — and I was not, for various reasons. They understood, and wished me well. It is important to manage medications correctly at home, and I have a special place for mine, and a calendar to chart taking them (it is easy to lose track, especially with a sometimes-foggy mind.) It is important to talk about the symptoms and worries as they arise — but not to dwell on them. I have been reading a variety of books (from Stephen King’s book on writing, to American War by Omar El Akkad, to mysteries Lee Child, to non-fiction like The Immortal Life of Henrietta Lacks by Rebecca Skloot, a fascinating story of medicine and cultural clashes). We’ve been watching movies and TV series (“Sense8” on Netflix is a favourite, and also a show originally on Spanish TV, now on Netflix: “The Money Heist.” I see friends, email friends and family further away, go to the nearby pottery class and relaxation/guided imagery groups at Wellspring Cancer Centre. I went to the moving, meaningful exhibit at the ROM (Royal Ontario Museum): Being Japanese-Canadian: reflections on a broken world: art by Japanese-Canadians dealing with their and their families’ forced displacement to the B.C. and Alberta interior during World War II. I have been able to correspond with a few of the artists, in interesting discussions about culture, history, family, loss, and memory. https://www.rom.on.ca/en/exhibitions-galleries/exhibitions/being-japanese-canadia

If all is going relatively well in October, we have plans to visit my son and his partner and her son, who are now living and working near Nanaimo, British Columbia. Joe and I talk on the phone often, more openly than we have for a while, and I just sent some money to the boy’s new soccer team. (I am glad Joe has emotional support in his life, too.) I have not been writing steadily since the publication of my book, The Day I Saw Willie Mays and Other Poems, but I have given a few readings from the book. I am starting to write some new poems and have an idea for a story.

And there are small but welcome pleasures and vanities. Nail polish on my toes (though I do have to wear socks and sneakers, not sandals, to protect my feet). Coffee ice-cream, and good food of all kinds (thankfully, I can eat well). Long, necessary naps. New, colourful clothes, and what my grandmother would have called “fancy” underwear. My friend Shaena, who went through treatment for cancers some years ago and is now doing well, asked if I had been buying clothes. Surprised by her question, I admitted that I had — dresses, flowered tights, a hat. She said she had done the same thing, and we both found out that we avoided wearing black during the treatment (a colour I had worn a lot). It makes me feel better to wear these bright garments, as well as some old favourites — and finding ways to feel better, even in a difficult time, is part, I think, of being a “good” patient — even when it is hard to be patient. As Mary Oliver says in “Wild Geese” :

You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.

A feeling to cherish.

About Ellen

I am a member of The Writers Union of Canada, the League of Canadian Poets, and CANSCAIP. I have received grants from the Ontario Arts Council for both writing and teaching. I currently work with Learning Through the Arts and Living through the Arts, programmes run by the Royal Conservatory of Music that enable artists to work in schools and community organizations. I have also taught in many other school and community programs, and have been a judge for various writing contests for both young people and adults.
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