The red hat rides again.

Posted on: Fri, 04/29/2022 - 12:13 By: journeyadmin
Skyline sunrise watercoulour from my hotel room.


A personal report on the Health eMatters Conference.

At the end of March I attended the Health eMatters conference in Toronto. Sponsored by Myeloma Canada, it brought social media influencers together face to face.

Two themes emerged from the conference as I thought about the experience. Stories and connections. As I reflect on each of the presenters and their stories, let me see if I can weave these two threads together.

Thursday, March 29, 2022


My outburst is one of those things that can only happen after two years on zoom. I recognized Mike Lang immediately but he was so short. I had spent hours with him in creating digital stories and presenting at the Festival in Calgary. But I had no context for that ball of energy. I can feel my face still blushing as I burst out "You're so short."

Lang's doctoral thesis captured the digital story telling process. His documentary video "Emerging Horizons" followed the digital storytelling process. It began with the initial meeting of a group of young cancer survivors following them to their final presentations . Until I watched the video I had not realized how empowering the story process had been for me. The digital story telling process freed me to tell my stories. I also went on and made one of my own on another issue close to my heart.

I saw how much emotion I  processed in the making of my own stories. Threads of grief are woven into all three stories. Not only did I talk about my grief for my late wife. I also talked about the parallel journey of my mother and our advocacy. And in the third one, I focussed on the grief of dealing with the death of online friends.

Our first evening we viewed the digital short story of Allysa Dickey. I realized as the story rolled, I had worked with her in a Lang workshop on the creation of her story. I had back story that many of the other participants didn't have. Still the distillation showed her zest for life. It is a poignant story of diagnosis of her multiple myeloma and subsequent treatment, . She has become a prominent voice in the Young Adults with Cancer community.

That was the first of many connections that I realized I had even though I hadn't recognized her name on the agenda. Two other connections attended the conference with me. The moderator of the Facebook Canadian lung cancer forum (Breathe Hope)that I frequent and a prolific mentor poster from the online forum kept me humble. I warned them that I was going to find a few people that I knew from other venues at the conference. They weren't as surprised as I was.

Friday April 1, 2022

Day 1 Morning

The day began with a scrumptious early breakfast. A welcome from our emcees, and our gracious host from Myeloma Canada started the day's agenda. This was the first conference that I attended from the in-person side of a hybrid conference. Robert Hawke told his story of coping with thyroid cancer and then beetled off home to emcee virtually from Peterborough.

Hawke's humour and artful use of backgrounds made it seem like he was with us in person. Who will forget the dairy barn (complete with sound effects) and "You are the udder under my wings." to his fellow emcee/comedian - Peter Lanae. Or the strange pine trees that grow in Peterborough that looked remarkably like the palm trees and waves stock virtual background from zoom.

I have never been to a conference where the steering committee is actually given a session. Usually there is an introduction and a polite round of applause for the group. This panel was a great foundation for the conference as they explained their vision for the conference.  We got a sense of the breathtaking scope that people had dreamed. The coming together of diverse people with cancer to talk about how they use social media to get their message out was inspiring. If the conference had ended at this point it would have been worthwhile. But it didn't. We still had another day and a half of choreographed sessions.

After a brief break to stock up on the excellent coffee, we plunged into the world of "Intentional Connections" with Nancy Milton. I quickly realized this was going to be one of those dense presentations. To reflect I would need to take notes on her many messages.

Communication happens with following items:

  1.     Setting the stage. Be clear on the purpose of the interaction. What do you want to accomplish?
  2.     Communicate as they want. While we often talk about audience, stopping to think about the best platform for each group is important.
  3.     Be prepared to deal with a power imbalance.
  4.     Prepare, practice, and then present.
  5.     Watch out for assumptions.
  6.     Listening. Ask for permission. Hear what is being said with curiousity and not judgement. Empathy is a key.
  7.     WAIT (Why Am I /talking?)
  8.     Turn down the filters.
  9.     Recognize the right to respond.
  10.     Connecting questions are not closed questions but are more than open questions too.
  11.     Focus on What and How, not Why.
  12.     Use activating words.
  13.     Use confirming sentences to reflect feelings.

We transitioned to lunch with the Second City improv troop. They got us talking to each other with a simple exercise. Using a vacation scenario with two partners we had to use prescribed prefixes in responding to each person's dream vacation. The first was "No..." Then we moved to "Yes, but..." which felt like the first. The final response had to use "Yes, and..." which led to remarkable affirmation and excitement. Words are important.

Day 1 Afternoon

The challenge of the afternoon was breakout sessions. Each time, I was torn between great sessions.

My first afternoon choice was to spend the time with Neil Parmar looking at self editing. Many content creators edit their own work. For myself, editing is a weakness. Yes "Killing the little darlings" came up as he outlined six secrets:

  1.     Key message - reflect it in a single sentence and in the headline.
  2.     Identify your key audience.
  3.     Note your goal - clear call to action.
  4.     Pick your platform for your audience.
  5.     Pull out your scissors - Slash cut trim. Little darlings, weasel words - adios.
  6.     Ask for feedback. Listen to your own stories. What are you telling over and over?

The art of social storytelling was the second workshop that I went to. Francesca Saracao drove home the importance of reflecting your values in your work. She showed how an active social account in Instagram connected to a Shopify account. She used these as a fundraiser with cookies to raise money in memory of cancer death. It started small but became almost overwhelming when it caught fire. She encouraged us to ask hard questions about values:

  1.     What do we stand for,
  2.     What feelings do we want to leave others with, and
  3.     How do we show up?


Our afternoon ended with a special session with Claire Edmonds. Another one of those connections. She had led a session at a cancerconnection mentors workshop. I knew her tender approach to dealing with grief would be powerful. Catching compassion fatigue before it becomes burnout is important. She showed us what those signposts might be when it is time to hit the pause button. She went on to talk about "bespoke" selfcare. By pointing out, that depending on our personalities, we need different kinds of attention. Dimensions of self care included physical, emotional behavioural, social, and spiritual.

And with that I ducked out with couple of other friends to have a wonderful meal at a nearby Thai restaurant to end the day.

Saturday April 2, 2022

Day 2 Morning

Day 2 began a little later but was no less intense.

The day began with me embarrassing myself by mixing up two women. The morning speaker was not the woman I had spoken to the day before from Twitter. The really embarrassing part was realizing that I had worked with her too. She was a consultant and board member with the Lung Health Foundation.

Joanna Wilson spoke to us in her professional capacity as a marketer with Edelman. The recently completed Edelman Trust Index had many insights about who people trust in  health. My takeaway from this session was that I needed to tell a fuller story. Talk about larger issues like climate change and poverty. I have always had a wide range of interests. I took this as encouragement to bring those wider interests to the stories I tell.

The pharmaceutical panel was fascinating. The executive director of Myeloma Canada pulled some networking strings. (It turns out I knew Martime Elias, Executive Director, as well. We had worked on the CanREValue project together.) She brought four patient partnership practice leaders from pharmaceutical companies together.

There were many hard questions for the panel. The panelists showed a refreshing willingness to listen. They talked about how their respective companies approached patients. There was discussion about clinical trials, reimbursement, access, and competing interests.

I'm still pondering the role of "patient visionary" held by a breast cancer patient at one of the companies.  She described her excitement at creating entirely new ways of relating to patients. She orchestrates new opportunities for involvement right from the initiation of drug research. Quality of life issues are front and center for her.

Once again excellent breakout sessions made choosing where to go hard. Mainstream Media - Lisa Machado was my first choice. Lisa had caught my attention as part of the steering committee presentation. Smart, sharp, and funny with CML - a rare form of blood cancer - herself, she spoke to the challenge of getting the attention of the media:

  1.     Help the journalists by finding a reason.
  2.     Use Awareness days and months to create compelling stories.
  3.     Don't be afraid to scratch the itch that is bothering you. "I have a bone to pick" often creates that compelling story.

The Canadian website that she works for is worth a look -

Day 2 Afternoon

After our last meal together we had one final breakout session. I choose my favorite social media - Twitter. Michele Austin made me see most of my Twitter interaction is reactive. If I want to develop an audience then I need to develop my own content. She covered learning how to deal with some of the nastier sides, reporting bad actors, as well as the finer points of creating threads and polls. This was the most technical of the sessions that I attended. Though I thought I was a pretty good Twitter user I realized I had a lot to learn.

The conference ended with a humourous duo. Dave Kelly and Jim Button told their story. Dave is a video show host. Jim is a brewer with terminal renal cell carcinoma. Funny? Those two had us in stitches with their irreverence but their clear great love for each other inspired.

Throughout the conference were all the little connections. Sitting with  presenters, I discovered that he had interviewed Jean Trebek, Alec Trebek's widow about his death from pancreatic cancer. There was my CCRA friend from Newfoundland with an accent so thick I could hardly understand her stories. Another presenter, Sheila McGlown who after hearing my story told me I needed to talk to her friend Dave Bjork. Turns out I already know Dave through The White Ribbon Project.

Thus ended an intense time of learning, connecting, and storytelling.