For years I have worn a hat, a wool Cowichan style in winter and a broad brimmed soft hat in summer. When I went to the first Cancer Connection mentor training workshop, folks commented on my red hat a lot. And it became a "thing." The first red toque was a microfleece picked up at a dollar store. Last Christmas I set out to knit a wool version with the idea of doing a few to share with my boys. It was an unmitigated disaster. You can not learn to knit from YouTube. Or at least I can't.
A friend (actually two now) took pity on me. One day I went to pick up the mail and there was an unexpected package. A beautiful wool red toque, knitted ,as I understand it, in a style preferred by Jacque Cousteau. The #redtoque has become an important personal hashtag. When I travel, I tag my posts on X (formerly known as Twitter) with the #redtoque and #thewhiteribbonproject or #twrp for short.
I've been travelling for the last two weeks. I'm not sure how to bring the trip together in one report. It was two very different experiences.
Saskatchewan
After a lot of deliberation, I decided that this trip was too much for a twenty five year old Volvo. The old car emits the occasional plume of smoke and needs new front brake rotors. Instead I flew to Regina, rented a car (Can anyone explain why it was over $1,000 to rent in Calgary and just over $300 in Regina?) and drove to the Cypress Hills. To be precise I drove to Sleepy Hollow group campsite. Twenty members of my family spent a week reacquainting ourselves with each other.
My sister-in-law coaxed me into running with her for ice cream on our last night together. It wasn't the 6K my brother told me it was but the hilly 4K did take the bounce out of me after not running all week. She asked a simple question while we were waiting for the family and ice cream. "What were my top three highlights from the trip?" Let me see if I can recall them for you:
- Small intense conversations that would never happen any other way. For example, there was the conversation about poverty and its impacts; another about finding joy in life changes; and one about retirement. There were lots of others.
- Digital detox. I knew I spent a lot of time on social media using a lot of technology but being in a place where I had to climb a long steep hill to get cell reception and Internet access showed me not only how much it was affecting me, and the value of disconnecting from it. I did have a few irons in the fire and so I chose not to ignore it completely. One of my more popular social media posts was my office, a camp chair in the shade of a hawthorn tree with the wide open Saskatchewan sky behind me.
- Seeing several meteorites from the Perseid Shower is a good example of the joy of reconnecting with nature. My daily walks have lost some of that. I listen to podcasts and I'm often preoccupied with thinking and processing something that has happened. I enjoyed identifying a prairie lupin, the burst of flavour from fresh wild raspberries, and the freshness of the air after a prairie shower.
Okay, there was a fourth...one morning we sat around on "Coffee Row" at my sister's trailer and read letters that my mother had written to her mother describing her first year in Canada. We shared other stories that we knew and for many of the in-laws it was the first time that they had heard these tales.
Too quickly the visit with my family was over. While a few folks trickled away throughout the week, saying those final goodbyes were harder than I expected and I will freely admit that I had to stop my car at the top of the hill and have a good cry.
I have a reprieve from my disease but it will progress at some point and there is good probability that I won't see some of them again. We Pratts haven't done this sort of gathering before and I don't know when it will happen again. We are scattered too far to imagine that it will be soon.
I was off to my next adventure.
Ottawa
In June I was approached about participating in the Patient Voice. This is a subgroup of the CMA (Canadian Medical Association) designed to provide patient input to issues that the organization is working with.
The group consists of 15 people with a Chairperson. One of the things that struck me almost immediately was the diversity of the group. Everybody at the table brought several aspects of representation due to their age, gender, race, origin, or life experience. We came from all parts of Canada, Victoria to St. John's to Yellowknife. I would say I have never seen another group this diverse. We were gathered with one single purpose - patient voice in health care. After we spent the morning acquainting ourselves with each other and saying farewell to outgoing members, we dug into the issues with guidance from CMA working groups. My cheeky Facebook summary and comments are as follows.
"On the Agenda:
- Integrated Health and Human Resource Planning - which I interpret to mean to get health professionals where they need to be and stop them from leaving and burning out. (But I could be wrong.)
- Administrative Burden - this is a big one for me. Let doctors work with patients and stop all the fighting with technology and as a friend calls it "administrivia."
- Public-Private Healthcare - I think you can guess where I stand on queue jumping...
- Physical, Psychological, and Cultural Safety - and there is of course an acronym PPC Safety. My question is - 'safety for whom?'"
As is often the case with these sorts of events, it is the "hallway conversations" that are most valuable. Ending up at a lunch table with Dr. Kathleen Ross, the incoming president of the CMA who introduced me to her colleagues, the past president and the president of Doctors of BC.
I stood up from a table conversation with participants in the early learner program to discover that a crowd was descending on me. The newly minted Minister of Health, the Honorable Mark Holland with his security and executive aides were being introduced by Dr Ross. After chuckling about my red toque and his red sneakers (with rainbow socks) we had a quick chat about the challenges of health care in Surrey, where he had just come from a roundtable with Punjabi community leaders.
The anticipated highlight was a connection with Robin McKee. She is a passionate patient safety advocate from Nova Scotia. She, with her personal cancer story, highlighted the challenge that biomarker testing presents for patients and the health system. Secondly, she raised the expense and ridiculous rules that surround the treatments around genetic mutations - specialized chemo, immunotherapy and targeted therapy.
Sitting with her for a few minutes after one of the sessions the instant connection that advanced cancer is, was immediately apparent. The blurry selfie of us, me with my red toque and her head scarf brings tears to my eyes just thinking about it. In our conversation she drove home to me that access is worth nothing if we don't value patient safety. To say that my expectations of meeting her were met would be an understatement.
I had one unexpected "trigger" that took me completely by surprise. Other patients had various experiences as aspects of the healthcare system were discussed. As we approached the end of the sessions, a young pediatric ER doctor took the stage to speak about the health impacts of climate change. She, herself, was a climate refugee. Her 100 bed hospital in Yellowknife was being evacuated along with the rest of the community under the threat of encircling forest fires. Despite that duress, she had a powerful and moving presentation highlighting that climate issues are health issues. The calmness belied the energy that she brought.
Watch this part of her presentation: https://drcourtneyhoward.ca/dance/
I left Ottawa with a full head and heart. I'm excited about the passion of the people I will be working with and I look forward to the challenge before us of reshaping the health care system.