Y’all have heard of the #fuckcancer movement / trend, right? It’s a way to channel the natural anger that comes from people experiencing what seems like a senseless illness. The generally accepted track post-diagnosis is to go through this very difficult treatment and hopefully win some good time you likely wouldn’t otherwise have.
My sister and I were discussing my mother’s condition a couple of days ago.
As far as brain cancer complications go, my mother has so far avoided a lot of the potential challenges. No seizures, she can move around her house, take herself to the bathroom, feed herself. When you think about how much my mother has lost with terrifying swiftness, it’s easy to forget that she’s actually in pretty good shape. She watches a lot of TV, and she’s feeling too crappy to really carry on a conversation.
But in the six months since her treatment began, my mother hasn’t really had one good day.
When my mother was given her diagnosis, she’d just had brain surgery, and she was with my father and sister. The doctor said the words “glioblastoma multiforme” without explaining the implications: drastically shortened life span, continuous treatment.
What my family was told was that treatment was her best chance at getting some “good days”. That she’d get through radiation and then “feel better”. That we’d have a chance to “make some memories” as a family.
I feel like the docs are never really honest about the side effects of cancer treatment. My family was never offered counseling, no one to sit down with my mother and say, “Hey, so, let’s discuss your options. What you want. What to expect.”
My mother faced enormous pressure to get into treatment *immediately* and was even told that if she chose to delay treatment, she may not be able to access any services in the future. Basically you’ve got your ticket to the cancer ride, are you on board or not?
My mother got on board. My family’s fears about the side effects were mitigated with assurances that the treatments weren’t nearly as dramatic now as they used to be, that the medications available for controlling side effects are much more effective now. They use words like “comfortable”.
At the time, I was confused why my mother choose to do treatment. I felt like the docs couldn’t *really* promise that she’d get more time, or feel better, or have ANY good days.
Without radiation and chemo, the tumour probably would have recurred by now and killed her. There is no way to know whether my mother would have had any “good days” if she’s simply healed from the surgery and tried to see how high she could bounce back.
It just makes you wonder, because the best conversations I had with my mother since her diagnosis were in that two week period between her surgery and the beginning of radiation.
My sister and I were wondering if treatment beyond surgery was a mistake… because now, the docs are out of ideas.
My mother is nauseous all of the time. It’s a severe quality of life issue. They’ve taken her completely off meds, they’ve switched meds around, even tried antidepressants. She’s still sick. You know what they said at her last appointment?
“Maybe the radiation has caused brain damage which is causing the nausea.” ie, the nausea is untreatable.
Her last MRI was great – no tumour re-growth. Hurray! But you know what? Without re-growth of that tumour, her oncologists won’t refer her to palliative care. Only under a palliative care model would my mother’s comfort be considered the highest priority.
Did I mention she was never offered palliative care as one of her choices? My sister, who is a HUGE palliative care advocate, is particularly pissed about this.
I’m confused about it, because I thought the treatment *was* a palliative regime designed to maximize her good days. No, it was actually designed to just maximize her days. I can’t help but wonder if she’s contributing to some statistic attached to her treatment center, if they have a vested interest in giving patients more days, since the patients have no means of rating for posterity what sort of days they’re having, how they’re feeling, whether they’d felt the days were worth the cost.
It makes you wonder what the motivation is behind pushing a senior woman through chemotherapy to maybe prolong her life by 6 – 18 months. Why not lay palliative care on the table right away? Why not offer counseling and some time to decide? Why is the only factor prolonging life?
Some people get angry at the disease. My sister and I, we’re pretty pissed at the medical system. I once again, suggested pot. My mother would absolutely qualify for a prescription. It *might* take the edge off her nausea and maybe even make her a little hungry. Maybe she could eat, feel satiated and actually have a good nap? Maybe.
It’s about the only thing the docs haven’t tried. Apparently, her current oncologist isn’t really pro-pot and won’t write a prescription. My sister’s working on getting a referral to another oncologist who is a bit more open. More holistic.
It pisses me off that a doc can say, “Well, I’m out of ideas but I’m not going to refer you to palliative care, nor will I write you a prescription for a substance that seems to help a lot of other people. You can continue to retch into a bowl.”
Fuck that oncologist. And while I’m at it, #fuckcancer