This post is about my journey as a cancer patient in the Canadian Public Health Care System and our use of Tableau throughout. I say 'our' because this post is co-authored by the brilliant and wonderful Bridget Cogley, whom many of you already know. Bridget is doing most of the typing of this post, as my cancer is a particularly cruel form of the brain. She has been supporting me throughout and we've had many long conversations about the Canadian and American health care systems. As well, all of the data gathering and dashboard work was done by Bridget with the careful eye (and arm) of Kelly. And Bridget is the one that poked me...many times over.
My Experience with the Canadian Health System
I was first diagnosed on April 2016, had 2/3 of a lung removed in June 2016, and still had 89% lung capacity. Yes, I am damn proud of my lung capacity. I was then diagnosed with lung-to-brain metastasis in October 2016. Then the fun began. You'd think the surgery would have been bad enough, but no, more was to come. Fortunately, I did not have traditional chemo to begin with, so I remained fairly strong. I began a series of stereotactic radiotherapy on 5 separate tumours over the next 2 years.
So, throughout this whole period, I kept the same primary care doctor. In fact, I had multiple doctors on my team who coordinated with my oncologist. I've had access to novel immunotherapy treatments, CT, MRI scans, and numerous top-line stereotactic radation treatments. I didn't have to chase the appointments. Every appointment was handled by a scheduler and they called me. I was never denied any treatments, but did opt to not pursue a few to keep my quality of life. Every decision was about care. Because that's the Canadian heathcare system. You walk in the door and you get told when to show up, but even that is negotiated. Your GP diagnoses you initially. From there you get taken over by all the people who will take care of you. All doctors get access to all information about my condition and health history. All procedures are well documented and shared. I can get the same documents, sometimes within the next day, as well.
I started this journey one day with two kindnesses and one cruelty. I had an appointment that day with both my dentist and my doctor. Unfortunately the tests came back with a mass in my lung. That's the cruelty. But all throughout this experience, my medical professionals have been nothing but kind. All decisions about my care, what treatments I would and would not pursue have centered only on the outcomes and toll it would take on my energy, never the financial cost. My money went towards comfort - a couch here, a bed there, and things that made me happy like a fabulous garden my friends and family helped create with me - instead of towards copays and deductibles that still make no sense to me.
The Canadian Health Care System
My healthcare costs were $50 every month and have been for the last 10 years, excluding things like dental care, long term, and disability. And that's all folks. Had I been working, even that $50 would be paid by my employer and a portion deducted from my paycheck. All prescriptions are reduced in cost and not a hardship. It's not a full system, it doesn't cover prescriptions, long term care, and disability fully, but enough. If I enrolled in a hospice centre, it would be $52 a day. As it is right now, I pay nothing for prescriptions under the palliative program, and I get a lot of prescriptions.
I'm explaining all of this in micro-detail because I want my fellow American friends to understand how a social-democratic country dispatches healthcare with care in mind. America is also a social-democratic country [universal education]. And yet, you're still behind on healthcare. You have a ratcheted system that helps some and not others. Under the Canadian system, YOU CAN STILL HAVE YOUR FUCKING DOCTOR. I still have my doctor after 35 years. I would hate for my friends to become ill and not have the love and care I've had.
Care is all it's about. And care is all about kindness.
Me as a patient
My next message is to cancer patients.
The first 4 days of being a cancer patient, I did not speak to anyone. I had to wrap my head around it and I was quite paralyzed. I didn't cry. I just couldn't move. After those 4 days, I knew I had to start calling people and I knew they would start crying and that's when I'd start crying. So, some would be angry and some would outright deny it. Talking to people is more of a strain on the person with cancer. I don't have a husband, so I didn't have anyone to buffer for me.
Once I was over that phase. I was really over it. I could start getting on with the business I had to do. As an analyst, I had to find the data and research. Bridget helped me by finding all the medical papers. Fortunately, Bridget has librarian friends and both of us know how to conduct proper research, so I wouldn't offend my caregivers with my questions. I was lucky to have Bridget or another person to ask questions or take notes for me. At each step, I had a very clear understanding of what my odds were going forward. And at no point did I reduce my level of chocolate intake. In fact, since, I have notably increased all chocolate and Dilly bar consumption. Now that I've done the research, it doesn't make any sense to starve or anything.
If you feel like you need to monitor your exercise or diet, go right ahead, but don't let others obligate you into it. You can also toss supplements, as they are usually unhelpful or incongruent with cancer medications. Above all, have kindness and love in your life at this point, because you will be exhausted like you've never known possible. Each new stage or change, you'll turn around and experience a new level of fatigue that you cannot have imagined beforehand. With cancer in your system, there will be a lot of sleep. You don't gain, you only lose. Same with exercise. In addition to fatigue, I had nerve pain that become chronic. That means a lot of complicated meds you have to take care of. For the first 2 years, I was able to take care of it.
At a certain point, I recognized a change and was informed that the cancer had spread to my brain. That diagnosis was particularly devastating, as now I belonged to the ghost people. Death imprints an ache and a terminal diagnosis creates a separation of you from the living. It's hard to live while knowing you're dying. One moment, you think of the future. The next, you realize there isn't that future.
I focused on comfort. I learned to garden, living each day to tend to that. And I couldn't have imagined doing this without Bridget Cogley.
Dying well
Do you know that we humans like to die alone? Yeah, I guess we're like other animals; like to just curl up and go. Not be a bother. Do you think that's it? Or is it that we can't let go if we're aware of a tether. Dad died with me. I whispered in his ear:
Thank-you.
I love you.
It's okay.
And while I was gently touching his arm, because he was so thin, I was afraid any pressure would hurt, he took a few more breaths, and then didn't. An honor. He shared it with me.
I was aware of death and what it could look like. I enrolled early in the palliative program and Bridget was with me for each major treatment. We researched, tracked symptoms, and isolated them to parts of the brain. As I got sicker, Bridget took on more. We worked with the palliative program and home care that's available to every Canadian. My son came and the three of us shifted towards the end.
Brain tumors are unpredictable. I don't want my last days with a personality that isn't mine. I wanted to laugh, to enjoy the days, and fart around in the garden as much as possible. We added in a variety of medications to use as needed to manage symptoms and tracked what worked and what didn't in a Tableau dashboard. It was the only way to see the patterns and to get more good days.
These are real medications and doses. I hope other patients and caregivers in hospice see this dashboard and understand what hospice at home and medication use could look like. Bridget has written about the making of this on her blog. I've lovingly given her permission to use this and do what she wants with it.
Coda
63% of Canadians with a terminal illness want to die at home. Only about 15% do. Kelly Martin died on September 30, 2019 in her home with her son and me (Bridget) at her side and her mother on the phone. A true honor she gifted us knowingly. We used this dashboard to provide care and communicate with providers. It was crafted in a couple of hours, edited with Kelly's feedback, and used to provide a better death. Seeing the data can truly be life-changing.
She wanted to leave this post for other patients from a patient. Most in her situation are not able to; they're often too sick. This post is her last transmission before the earth is destroyed.
So long, and thanks for all the dashboards.