How time fleets. I started this note shortly after my return from Lisbon, but it has since languished for a variety of reasons. They will become apparent as you read on.
On my way to Lisbon, I stopped overnight in Toronto. I met with the oncologist with whom I have been discussing a lung cancer vaccine. At the moment, I haven't exhausted enough of my treatment options to be eligible. He was successuccessfully enrolledsful in enrolling me in a clinical trial for Dato-DXD (Datopotamab deruxtecan). As we await the outcomes of my recent radiation, we are pursuing the trial's relocation from Toronto to Vancouver.
Ah, Lisbon. Portugal is all it was cranked up to be. Fantastic food and incredible architecture. The most striking element to me was the contrast between new and old. Cobbled streets that are over 400 years old, an old building from the 1600s with a glass skyscraper behind it. I spent two days exploring. I then settled into the International Integrated Care Conference, a gathering of healthcare professionals and advocates from around the world, for the remainder also of my time there. (I did sneak away one afternoon to see the Maritime Museum across the street.)
One of the most striking elements of the conference made me incredibly grateful for my involvement in CMA Patient Voice. The overall feel of the conference was "Patients Excluded." For example, I attended two workshops where the planners had not designed the workshop to include patients. The workshop leaders formed groups that had not considered there might be patients in the room. The plenaries that I attended had no patient involvement. When I compare this to my Canadian experience, we are very progressive. I have served as a keynote speaker at an academic healthcare conference and a panellist at the CMA Health Summit.
The workshop I assisted in leading used an internally developed framework centered on TRUST. The TRUST acronym stands for Transparency, Representation (diversity of perspectives), United (similar to teamwork), Support (staff training, enough staffing, financial support, etc), and Track (measuring against the full acronym). We used it to determine whether example AI implementations were ready for prime time. We used a red, green, or yellow light to indicate readiness. My role was to provide five examples from my own experience of how AI was being used in healthcare. The resulting discussion was lively, ranging from ethics to liability to environmental impacts.
As I mentioned in my last note, upon returning from Lisbon, I began radiation treatment. It was a series of five days of high-intensity radiation. The goal was to stop the progression of my primary tumour and one spot that had popped up during my docetaxel treatment. The protocol began on a Thursday and was planned to end the following Wednesday with a two-day break over the weekend. When I returned on Monday for treatment, there was enough inflamation that the techs and the on-call oncologist called a halt. They felt that the treatments needed to be replanned. So, I went home untreated.
Shortly after I got home, however, I received a call saying that they had reached my radiologist, and he was comfortable with continuing as planned. My cough worsened as the treatment progressed. This was not unexpected, though, as my airway was near the area being irradiated. Now, a week out from the treatment, my cough seems to be improving. I hope I will enjoy a cough-free summer.
Last weekend was the local 5K 'Give a Breath' run event. Thanks to all of you who supported me financially. I wasn't up to running, but I did walk the full 5K. There were moments when I wished I had worn shorts so that I could try running. It was a good thing that I wore walking pants as it nipped this urge in the bud. One of the highlights of this event was seeing my lung cancer friends. I know so many of them only through Zoom; so many hugs and hearty handshakes were shared. Catching up with treatments and meeting several new people in the group was a true joy.
We lost one of the stalwart members of the group a few days before the Run, so we took a moment not only to remember her but also others of the group who had passed away. We did it in a way that many of them would have appreciated. We cheered rather than a moment of silence; it became a moment to celebrate our joy at the inspiration they had been to us. Shortly after the event, we learned of the death of another stalwart.
For me personally, this brings up survivor guilt. Why them and not me? I don't have a good answer, but I use it as a moment to reflect on my own mortality. I find it a spur to my motivation to speak out about this deadly disease that takes too many too early. They will be missed.
In music, there is a stage that I occasionally remember from my three years of piano lessons. At some point, a piece of music becomes so well-practised that it flows. It isn't forced, but the rhythm flows gracefully.
The soft launch release of the National Action Plan for Lung Cancer, a comprehensive strategy to improve lung cancer prevention, diagnosis, and treatment, awoke in me a sense of urgency. This Plan, developed by a team of experts and advocates, outlines key initiatives aimed at reducing the burden of lung cancer in Canada. I wanted to shout it from the rooftops. However, we plan to put a solid implementation plan in place over the next few months and make a massive splash in November at the Canadian Cancer Research Conference. Accepting this need for patience was hard, but it was for the best. Allowing a plan to unfold with ease is a wonderful thing. I'm proud to have had a small role to play in bringing this Plan to fruition.
As always, thanks for your continued support and prayers.