I travel a lot and a "friend" is making jokes about me spending more time in hotel rooms than in my apartment. The truth is I'm enjoying the opportunity to meet new people and to speak up for lung cancer.
I had been looking forward to the Health eMatters conference since I was there last year. It was with great excitement that I learned that the organizers had selected me to return. A few weeks ago, a mentor from in the cancer world contacted me about my interest in a one day forum on cancer equity measurement. The thought of flying out to Toronto (a five hour flight) for a day, then turning around, and flying back the next week sounded tiring, so I stayed out there.
I struggled to see how I could contribute to a "Cancer Equity Measurement Forum." The conference organizers thought I might have something to say on the basis of "lived experience."
Keeping track of Who's Who in the cancer organization zoo can get challenging at times. If you are feeling as overwhelmed as I do at times, please don't feel like you need to read or look up the rest of the information in this paragraph. While I had heard of CPAC (Canadian Partnership Against Cancer) I knew little about them. Their mandate comes from Canada’s federal government. They founded CPAC in 2007 to serve as steward of the Canadian Strategy for Cancer Control. The federal government tasked CPAC with facilitating efforts across the country to move the Strategy into action. Their goal is to improve cancer outcomes.
Much of the focus of the meeting was on the Indigenous and Metis communities. There was a lot of discussion about how to implement the recommendations of the Truth and Reconciliation Commission.
Patients brought something important to the table. (As one of my sons would say "Yeah, Captain Obvious, of course they did.") As a former resident of the La Ronge, I won't forget the graphic description of medical taxis and gravel roads in Northern Saskatchewan; or the simple statement from another patient advocate from Haida Gwai, "we all belong to someone." I drew attention to the lack of male participation in survivorship and support groups.
In my closing comments at the forum, I said, "25% of all cancer death is lung cancer. 6% of research funding goes to lung cancer. I used my cabinet maker mentor's adage "Measure twice, cut once." I have always emphasized the measuring part of that adage. But now I see that the emphasis needs to be on the cutting - taking action on what we already know."
On the weekend, I went to Kitchener and took in the Kissing Bridge Artist Tour and St Jacob's Market. Despite my traveling companion being a CancerConnection.ca mentor I had promised not to talk cancer all weekend. However, I didn't listen. I found myself in several in-depth conversations with artists about Creation Nation (the online group that I mentor on http://cancerconnection.ca for artists.) The treat of Stratford's Shakespeare Festival's "Much Ado about Nothing" was an unexpected surprise. I laughed so hard my cheekbones hurt. It made me wish I knew more Shakespeare. I'm sure there was some ad-libbing in the lines but exactly where I didn't know.
On returning to Toronto I plunged into a whirlwind of meet-ups. Friends, cancer companions, the executive of Lung Cancer Canada all took time to connect with me. Some common themes emerged from the discussions. How do we continue to support patients who are interested in research? Do we need a coalition - a patient union to speak for cancer patients? There is a power imbalance between organizations and individual patients. Patients are being asked to speak about their lived experience without adequate compensation or training. What can we do to shift that balance?
How do we connect stories to data in meaningful ways? The Executive Director of Lung Cancer, Shem Singh, put it frankly "How do we humanize lung cancer so people will talk about it?"
It wasn't all meetings though. I took a quick side trip to Ripley's Aquarium. There were some small displays of sea horses and tropical fish that were interesting but the main attractions were just sad. Sharks and sea rays drifting around aimlessly weren't attractive at all.
On the other hand, my visit to AGO (Art Gallery of Ontario) was side trip worthwhile. I went primarily to see the KAWS display. Controversial because of his intersection of art with commercialism, it was a fascinating exploration of iconic cartoon characters and an exploration of color and form. I have long been a fan of Tom Thompson. Seeing several of his large canvases was nice. But what really took me by surprise were all his 8.5 x 11's. Done on his canoe trips in Algonquin Park, they were a curious exploration of the environment in the park. It made me realize that my art could be that as well.
The final artiist that surprised me was Sarainder Dhaliwhal. Her seemingly whimsical explorations into a wide variety of art forms were startlingly political. from a story told with clay letters stuck to the wall with magnets (There was a pacemaker warning.) to a mural of pencil crayons highlighting her fascination with color it was just inspiring.
My week ended with the Health eMatters Conference. Sponsored by Multiple Myeloma Canada, the conference brings together "online influencers." We came from across the Canadian cancer spectrum. From self-care to navigating the workplace to how to start a magazine, the speakers guided the discussion on to how to have a bigger impact.
The organizers asked me to sit on a panel to talk about how we became patient advocates. Listening to my fellow panelists, it amazed me how often our involvement came from anger about injustice. In my responses, I emphasized again the importance of story telling and relationship building. For example, I had set a goal of speaking to everyone at the conference. I achieved that goal. By the middle of the conference, Angus's "yearbook" had become a "thing." I was amazed at the diversity of cancers and people's personal experiences. By talking to all these people, I learned things that I could have learned no other way.
I posted on Xitter (X formerly known as Twitter) as I waited for my luggage on the carousel in Vancouver that I came away from my travels and the conferences with a full heart.