“I want to call you my husband for our remaining time together”
she said. I jumped at the chance to marry this extraordinary woman. We are seizing the day, aware that my new post-chemo drug’s effectiveness is time-limited. I want to be able to dance at my own wedding this Easter weekend.
“’Til death do us part” is already the billboard of grief we face every day. But, there is much joy in our lives as well. Since my bleak prognosis nearly 4 years ago, we decided to prepare for the worst case scenario, but create the best possible conditions for the time we have left together.
My sweetheart sees me mostly staying on the ‘sunny side’ – actively involved in my care, searching journal articles, exercising daily, and being an enthusiastic patient advisor. She also sees in me a romantic partner who is going to face his palliative future with courage and grace. She needs me to continue to be responsive to her needs as well, rather than see me becoming an increasingly bitter, demanding, and depressed patient.
However, being an ‘engaged patient’ while navigating the health care system has as many challenges as rewards.
Assuming responsibility for one’s care can be traumatic and exhausting
Sharing accountability with my health providers for care and treatment decisions is a huge responsibility. Did we make a fatal mistake or decision? Did we choose the wrong treatment sequence, or miss an opportunity?
When the health care system isn’t taking responsibility for managing your future care and well-being, leaving you to drive, it’s even more daunting. For us, that included doing our own palliative care planning, long before my health care team would use the ‘p’-word. I know that a skeletal fracture or spinal injury is in my future. That dictated selling my house, purchasing and renovating a more wheelchair-accessible condo.
Now, I’m trying to figure out and negotiate Plan B if my current treatment fails. No one is doing that for me now. Treatment decisions are short term, made one appointment at a time while I am acutely aware we need a longer-term strategy in place to follow predicted treatment failures. So I am scouring the Saskatchewan drug formulary for approved drugs and protocols, exploring drug trial options in other provinces.
Being on duty constantly
Between appointments, our health care system is ‘asleep at the wheel’. I’m awake 16 hours daily, or 28,800 minutes monthly. Along with 2 ½ hours of exercise daily, preparing healthy meals, and routine demands of life, I am coping with my symptoms, pain, anxiety, side effects, managing treatment and medications. I am also coordinating my chronic (and now palliative) care and working on Plan B.
My oncologists see me for 20 minutes a month, or .07% of my waking hours. Like it or not, I’m driving this chronic disease bus all alone the other 99.93% of the time.
Exposing yourself to full knowledge and fear
Patient forums, specialty websites, and treatment research abstracts are incredibly helpful, but can also be really scary. Nearly every one of these reminds me my cancer is terminal. I am facing the evidence of my own looming disability and death every time I educate myself about my condition and treatment options to extend my time.
Engagement exposes that the system can be blind, deaf and dumb
During weeks of chemotherapy I reported blurred vision. The ophthalmologist could identify no cause for the blurred vision, and dismissed my suspicion that it was a side effect of the chemotherapy. The neurologist concluded my brain was fine, and suggested I try eye drops to see if that would help my vision. I purchased one that purported to rebuild protein balance.
I googled “Systane Balance and chemotherapy” and Bingo!–there was a recent ophthalmologist professional association journal article about chemotherapy drugs and their well-known tendency to produce blurred vision as a side effect, which recommended Systane Balance daily to restore normal vision. My ophthalmologist hadn’t read his own association’s journal, hadn’t offered to investigate, and distrusted my report that I thought chemotherapy was affecting my vision. Engaged patients see more of the flaws in our system and have to live with the knowledge that often they aren’t getting high quality care.
Engagement requires more courage than passive acceptance
The traditional treatment model means getting diagnostic and bloodwork tests done a couple of days before my appointment with my oncologist. Because they won’t release the results to me until my appointment, I worry for 48 hours, then sit alone in the examining room at appointment time, waiting for the axe of bad news to fall.
Then, suddenly I get really bad news about rapid cancer progression. I am in shock and paralyzed with fear. This is exactly the time when I need to be clear headed as my oncologist asks me to consider and decide on his recommended next treatment steps. A thoughtful, rational discussion is impossible. Hard evidence that your expiry date is more rapidly approaching than you were expecting is simply terrifying.
To avoid this crisis model of decision-making, I ask the lab to copy the results to my GP. She phones me promptly with the results as soon as they are available so that I can process the news, recover from the shock, and consider next steps. When I do finally meet my oncologist, who shares the news I’ve already heard, I can focus on deciding or consenting to his recommended next steps instead of just trying to start breathing again!
Conflict with health providers
When my regular oncologist was away, the physician who saw me hadn’t actually reviewed my chart, and couldn’t tell me the actual test results I sought, although he reported enough for me to be really scared. When I suggested adding another drug that might boost the effectiveness of my current treatment, he just said he hadn’t heard of that, booked me another appointment a month later and left. He was cold, insensitive and stubborn. I now have a flag on my chart so that I never have to see him again.
When I asked at my regular clinic to get my lab requisition amended to ensure my oncologist and I had the right information for our upcoming appointment, the nurse repeatedly declined. She said she didn’t have easy access to my chart since I didn’t have an appointment that day. Eventually, I asked to speak to someone else. Her supervisor arrived, I explained, and after waiting 45 minutes, the requisition was finally amended.
Although it’s never said out loud, engaged patients are often viewed as naive and uninformed. I get a lot of push-back and stone-walling. It makes my attempts to stay an engaged patient twice as hard as they need to be.
That’s my short list of challenges facing the engaged patient. Now it’s time to switch back to the sunny side, think about wedding preparations, and my vows. I also need to work on my next posting, the rewards for being an engaged patient. They do outweigh the challenges and I am grateful.
I figure I am the luckiest man on the planet. I’m engaged!