I handed over my health card and told her my doctor’s name.
“I’m sorry, I don’t know who she is. What are you here for?”
Her smile widens.
“Because I’m a patient?” I retort.
I know I’m being rude. But it’s an oncology ward. What does she think I’m here for? To discuss the weather? The shortage of wheelchair-accessible parking spaces in the lot?
What I really want to say is, my doctor is a palliative-care specialist. I’m seeing her because I have cancer. I’m preparing for my death.
I don’t look like I have cancer, let alone the incurable kind. I have all my hair. My friends and husband assure me my colour is good. Dressed in my normal clothes and not the pajamas I currently favour, I look reasonably well – for a middle-aged woman who also has spinal muscular atrophy, a congenital neuromuscular condition.
I rely on a motorized wheelchair to get around and need personal support workers to assist me in all aspects of daily living. It’s been this way forever, but now I have colon cancer, and two external abdominal bags to collect various bodily fluids.
This, to put it mildly, complicates things.
My palliative-care doctor is a compassionate young woman who wouldn’t look out of place in a medical drama. She has been guiding me through my own recent hospital drama: I was readmitted to hospital a couple of weeks earlier, for yet another emergency.
I’ve been fighting off a major abdominal abscess for more than a year now. At one point, my abscess was so large, one of my doctors admitted surprise that I was upright. This is what initially led to my cancer diagnosis. A colon biopsy confirmed the cancer was malignant. In October, I was told my cancer was inoperable, despite 28 rounds of radiation.
At least it’s not metastatic. Localized, but nowhere else. For now, anyway. Plus, my surgeon tells me, I likely have years with this cancer. Not months or weeks, like some of his other patients.
The challenge now is the infection associated with the abscess. During this current crisis, antibiotics are working. What my surgeon can’t tell me is when the next infection will hit, or when antibiotics may fail.
Some patients reinfect every month, he tells me. I’ve done well, he adds. I tell him I couldn’t handle being hospitalized every month. He acknowledges I would need to evaluate my quality of life, if this became my reality. In that moment, my decision to seek palliative care early seems the smartest decision I’ve made in a while.
Like most Canadians, I had limited understanding of palliative care before I had cancer. To me, “palliative care” was synonymous with “you are about to die.”
That’s not the case. On my first palliative visit, the doctor explains the word is Latin for “to cloak.” She personally likes that, seeing her role as guide and protector to patients who are coping with the most difficult time of their lives.
I need her guidance. There is no clear path around how to deal with cancer while living with a disability. I’m used to being disabled. It’s my normal. My quality of life up to now has been exceptional, complete with a husband I adore, a sweet, sassy daughter and a brand-new career.
Like everyone else diagnosed with cancer, my life has suddenly imploded. I find myself in this new world, navigating how to continue while knowing the end is coming much sooner than I’d like.
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