10 November 2019
Please note that I didn’t say anything about the healthcare system, because talk like that is too impersonal; when it comes to patients, not having a doctor when you need one is very personal.
Let me introduce you to Phyllis Smallman, a feisty and funny writer, mother, grandmother and wife of over 50 years to her best friend and high school sweetheart. Phyllis was the first recipient of the Crime Writers of Canada Unhanged Arthur Ellis award and wrote, among other books, the Sheri Travis mystery series. She won multiple awards for her writing. She grew up in Southern Ontario but, at an age when most people retire, she and her husband moved to Salt Spring Island, B.C. to be closer to her children and embark on a new adventure.
In October 2017, 72-year-old Phyllis found blood in her urine. Her family doctor was concerned but couldn’t get an appointment with a specialist to do a cystoscopy before the spring of 2018. Phyllis trusted that the system would keep her safe, but her family began to worry as she developed other symptoms. Phyllis, a self-described foodie with the personality of a small energetic terrier, was too nauseous to eat and was experiencing extreme fatigue.
My point of contact to this story was through her daughter, Elle Wild, another Arthur Ellis Award-winning writer. Elle was worried and wanted her mother to be seen sooner. Elle, her brother and father spent a great deal of time trying to get Phyllis into a specialist. They called everywhere and finally found a specialist who could see her before Christmas. When the cystoscopy was done there was too much blood for a definitive diagnosis, but an infection secondary to a previously-inserted mesh was thought to be the problem. Phyllis was put on a six-week-long course of antibiotics and then put in the queue for a second cystoscopy and a CT of the kidney. The antibiotics did not improve Phyllis’s health. Her nausea became more severe, she lost weight and became so weak that she couldn’t even walk across the room. She slept most of the day.
Through conversations with Elle, the growing anxiety of the family was palpable as Phyllis, their lively matriarch, began to disappear into long sleeps and uncharacteristic exhaustion. Phyllis’s deterioration continued day by painful day, and by February, the family had had enough. Despite Phyllis’s objections, partly because she continued to trust that she would get taken care of in our system and partly because she was too exhausted to go to appointments, the family paid for a private CT and she was diagnosed with a kidney tumour.
However, there was another queue for a specialist to do the biopsy and yet another one to see an oncologist. It was only on April 16, 2018 that Phyllis finally received a definitive oncologist report: an advanced and aggressive form of cancer that had started in her bladder and had spread to her kidneys. She was given six months to live and offered palliative chemotherapy. Her daughter, Elle, moved with her family to Salt Spring Island to spend time with Phyllis and to provide emotional support to her distraught father.
Phyllis did her best to complete the course of chemotherapy, but was only able to do half of the treatment because of fatigue, nausea and her emaciated state. Phyllis Smallman died on October 1st, 2018.
In her obituary, her family wrote: “Those who spent time with Phyllis knew her as a caring person who loved fiercely, laughed loudly, and was always a friend to anyone in need. In keeping with her dark sense of humour, her last book was ironically titled Last Call, the final Sherri Travis mystery. The night Phyllis died, Last Call won a Reader’s Favourite Book Award. Our Phyllis knew how to make a grand exit.”
Tragedy is defined as a story involving a great person destined to experience downfall or utter destruction through a conflict with some overpowering force, such as fate or an unyielding society.
The story of how Phyllis spent her final year is a tragedy. The unyielding social truth she faced was that Phyllis simply could not get access to the doctors she needed: this reality met her faith in our healthcare system and made a mockery of it. The lack of physicians left her family alone in their growing worry for Phyllis and isolated as they watched her die, without a doctor to tell them what was happening and perhaps even intervene to help.
When people say that healthcare is a human right, I agree. There is nothing as inhumane as a patient unable to get the care they need.