Cancer patients often talk about calendars. I have no big things on my calendar beyond the end of November. Until now. I ended up in an incredible conversation with a group from Barcelona. When they discovered that I spoke Spanish, I got a dinner invitation. Dying is not an option. I have turn up in Barcelona in September 2025 for an incredible paella. I can live for that.
World Conference on Lung Cancer
The highlight of the last few months was my trip to IASLC (International Association for the Study of Lung Cancer) World Lung 2024 in San Diego. I was a little worried as my last induction infusion was a week before the conference but I had been watching symptoms carefully. I was okay. My metal mouth and nausea disappearing the day I arrived in the city.
I always do the lowball bid on an upgrade to business class on my WestJet flights. On this flight my bid was successful. So for the first time on WestJet I flew in style. Flying through checkin, wide comfortable seats, attentive service, I can see how that could be addictive.
The conference itself was quite marvelous. I'll take the liberty of using bullets to try and capture the flavour for you.
- The first patient I ran into was Caleb Egwuenu. His advocacy in Africa is amazing. The simple things that we take for granted (easy blood draws) that he is able to support for patients are the focus of his work.
- The Screening Symposium opened my eyes to possibilities. Finding an alternative for low dose CT screening like the FIT test for colorectal cancer is the focus of a lot of research. Mobile screening units are slowly coming on line making access in rural and remote areas easier. There is also awareness campaigns that reported what works and what doesn't.
- My presentation on "Chemotherapy for EGFR patients" was well received. Judging by the questions that directed at me during the 30 minute question period, there is a lot of interest in the patient perspective on this.
- My patient response to another Presidential Symposium press briefing also went well.
- The session on Compassion Fatigue was not as well attended as I expected but there were a lot of young oncologists as well as patients. The presentations were excellent and yes there were tears shed at the microphone.
I managed to sneak in a couple of session on the amazing treatments that are coming for post TKI patients though they are still a few years from the clinic.
Limbo Treatment
I"m now into the maintenance phase of this current treatment program. I like to call it "chemo lite" as it literally took me longer to find parking than it did for the infusion. Unfortunately the side effects were not the lightness I was expecting. I still feel a lot of fatigue and the "metal mouth" that I associated with the carboplatin still seems to be there.
The good news is that I'm running much more regularly and my online exercise class with the Wellness Lab in Calgary have resumed. The mental benefits of exercise can't be understated. I have been asked to record a podcast with Lung Cancer Considered - the official podcast of the IASLC - to discuss the issue from a patient perspective.
Several people have asked how long I will be on this and my flip response has been "till the end of time." There is another standard of care chemo available but it truly is horrible. Most people don't stick to it for very long if they even start it. On the other hand a friend has had 55 cycles of this treatment. Imagine every three weeks for almost four years. My hope is that this is me and that by the time I get there that some of those amazing new treatments are available. Not time to give up hope yet.
National Action Plan
Another small highlight was a breakfast with the LCC (Lung Cancer Canada) folks at the conference. The current LCC president leaned over as we were getting to leave and told me that she has a copy of my poster from the CCRA conference last November on her desktop. I was deeply moved. That poster has also been a key focal point of the National Summit coming in November. The goal is to develop an Action Plan for Lung Cancer.
A series of surveys has led to a Summit day where, through a series of workshops and panels, a plan will be developed that we can use as a guide when asking for research funding. There will be approximately 120 people invited to attend. A third will be patients, a third clinicians and researchers, and a third policy makers and representatives of agencies from the cancer world.
USS Midway
On my final day in San Diego I became a tourist - oncotourism ya know. I had a wonderful time with Seamus Cotter taking the Hop on Hop off Street Trolley through the city. It was a fascinating introduction to the city. My only regret was that I hadn't done it earlier in the trip.
We ended up on the USS Midway - a decommissioned aircraft carrier - moored in the heart of the Embarcadero. It was 9/11 so I attended part of the service held on the flight deck. I had two parts of the ship that I really wanted to see, the tower and the engines. Seeing how this massive ship is controlled in a small space was interesting. And getting down to the bowels of the ship and seeing the size of the turbines and shafts was interesting. My Sea Scout buckle seemed to loosen lips on the old sailors and aviators and I had several conversations about life at sea.
The highight and the memorable part though came in a bland presentation on the catapult that the docent had obviously given many times. "Tactical Redundancy" As he was talking about how three very different systems all had to reach a similar conclusion before the plane was launched, I saw a powerful illustration of why aviation is so safe.
While there are some systems in health care that have these types of procedures built in, there are many more that need that kind of safety. As we talk about creating safe spaces for patients to be treated we need to move beyond making sure they get the right treatment. Cultural, trauma informed, and respectful safety are moving to the fore. Looking at other industries to see how they have handled these situations provides us with clues.
A few days ago I ran across an inspiring piece of poetry from a poet I had heard of but not read much of. José Marti was a Cuban who fought for the independence of Cuba from Spain.
de Versos sencillos José Martí
translated from Spanish by Anne Fountain
Yo vengo de todas partes,
Y hacia todas partes voy:
Arte soy entre las artes,
En los montes, monte soy.
No boundaries bind my heart
I belong to every land:
I am art among art,
A peak among peaks I stand.
Thanks for all who keep in touch and support me in all the things that I do.