Written on the Body, #48, February 10, 2022: “The Good Patient”

February is a short month in days, but filled with many special days. Including the whole month of Black History Month — and also Black Futures Month, the Harbourfront (Toronto) celebration of new and upcoming Black writers and artists in all fields. Those of us who are not Black need to remember and think about Black history, as well as other people’s cultures and histories, all year long, not just for one month, and understand our role in history and in making things better in the present, with more empathy and understanding.

Feb. 1 was the beginning of the Lunar New Year — this year, the year of the Tiger.

Feb. 2 was Imbolc, or St. Brigid’s day — celebrating the first stirrings of the spring, the birth of new lambs, and also healing and poetry and new light. It is also the day, in various parts of Canada and the U.S., when a groundhog or similar creature is reported to come out of his burrow. If he sees his shadow, we have 6 more weeks of winter; if it is too cloudy, we have an early spring. So they say. And many of us remember the movie Groundhog Day, in which Bill Murray’s character has to repeat the same day, over and over (and over), until he gets it right.

A time of new beginnings but also of uncertainty.

Before I get to my medical news, I want to write about being “a good patient,” something I’ve thought about since my diagnosis but which has been more in the forefront of my mind since my stays in hospital in December 2021.

As I’ve discovered over the past few years, being a good patient isn’t being passive (from the same root as “patient”) and simply compliant. It is being engaged, aware, involved in and agreeing to the treatment — or using your right to decline a treatment or a medication, after careful consideration. It is about asking questions and, often, saying what you feel: I am concerned about, I worry about, I wonder about. Why is this happening? I would like like to visit my family; when is a good time to do this? I would like more time and more quality of life as far as possible. Sometimes it is saying: I appreciate it when I see the clinical notes in my hospital “portal” (online record) soon after a visit rather than three months later. It is knowing nurses’, technicians’, and doctors’ names, and being able to make a bit of conversation even while treatment is going on, so the interaction feels more human.

Being a doctor’s daughter, I realise I don’t have the awe of doctors that many people feel, but I do have profound respect for the medical profession (especially for those who practice it well, in whatever capacity), and throughout these 3 years, since diagnosis in February 2019, I have chiefly relied on Western medicine for treatment. I also feel comfortable using non-intrusive alternate techniques, like yoga, breathing exercises, relaxation and guided imagery, as well as counselling — all of which have helped me feel better emotionally and spiritually, and added to my physical healing and energy.

But as I thought about this further, I saw that I had one other requirement on my mental list: the good patient stays alive!

And this is not necessarily true. None of us get out of here alive, ever; following procedures, being engaged and aware, wanting to get better, having a positive attitude — all help but don’t provide guarantees. This is where I am now. Unfortunately, the clinical trial I started in December has not worked out the way the doctors, and Roger and I and our family, all hoped. A CT scan in mid-January showed a large increase in the metastases in my liver (both size and number), new metastasis in my lungs, and some growth of the original esophagus tumour. This is a stubborn cancer. I asked, of course, if more time on the drug could improve things; maybe it just hadn’t started working well. But the doctor said this is “unequivocal” evidence the drug is not and will not work, and it’s not to my benefit to stay on it.

There is another “standard” chemo that we could try, but at this point I am also feeling weaker, more fatigued, and less well, and my oncologist whom I’ve seen since the beginning thinks the drug will probably not be effective and the side-effects could make me feel much worse. All these are possible results, and no one knows how I personally will react. I have been soul-searching and talking with family and close friends for a couple of weeks. As my son says, “There is no absolute right or wrong answer: you have to do what is right for you.” And Roger says, “It is about deciding how I want to live the rest of my life.” I need to make a final decision by next Tuesday, but my heart has already chosen — I want to live peacefully, enjoy time with the people I love, being in nature (especially in spring and summer), and use palliative care to help manage symptoms like fatigue, some difficulty eating, etc. I don’t want to “give up”, but I do want to make this choice — and would rather not use my energy coping with all the stress of chemo. Roger has his own health issues, too, and we need some quiet time together.

Palliative care is already involved in a minor way. I am still in no pain, can get up, walk around, take care of myself, cook, so there is no need to involve their direct help just yet. Family and friends have been wonderful, bringing food if they are nearby, and otherwise sending good thoughts and wishes; doing zoom and phone calls; just being there, caring and loving. I think of a line from the play Marvin’s Room, where a character who is dying says she has a lot of love in her life. Another character agrees with her: “You are very loved.” The first character replies, “No, I mean I love people a lot.” I am blessed to have both: to love and be loved.

Appropriate words to close this piece, as Valentine’s Day is approaching — a time to celebrate love in all its forms: family, romantic, friendship, and love for the earth and for all its people and creatures. (I feel this especially as the world is sliding into more chaos and anger). Thank you for reading and being with me on this — still ongoing — journey. There will be more blogs…

xoxo Ellen, aka Esther

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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