Spring into Summer

Posted on: Sat, 07/08/2023 - 12:32 By: journeyadmin
Watercoulour daisies


I've had a few things going on and writing has gone by the way side for a few months. It was a bit of a surprise when the solstice rolled by and I suddenly found myself facing Canada Day. I have kind of an easy month ahead of me. The first thing I thought I would do is catch every body up on my travels and advocacy.

AACR (American Association of Cancer Researchers)

I was fortunate to receive a Scholarship to attend the AACR Survivor Scientist program. I climbed into an airplane for the first time since my bout with Covid last fall and flew to Orlando. How do you summarize a conference with 21,000 participants? Not easily. So you get impressions only.

Cancer is a complex set of diseases. Exposure to leading edge researchers convinced me that we are on the brink of incredible breakthroughs. Hearing a presenter introduce herself as a weather forecaster who is applying her knowledge of mathematics to modelling cancer; hearing another whose expertise is evolution and microbial resistance talking about cancer evolution; and all the brilliant advances in lung cancer genetics and targeted treatments.

On a personal note, on the first night a conversation got me thinking about my decision a few years ago not to pursue a MSc (Master's in Science.) That conversation sat with me for four days. Then on the last day, I had another one. With a senior researcher, I explored the details of what it would take and what strengths I would bring to that endeavour. That conversation is still with me. Don't be surprised when I pursue a MSc.

Survivorship Workshop

Several weeks after my return the Canadian Cancer Society (CCS) asked me to keynote a Workshop.  CCS brought together the teams who had their grants around the topic of survivorship. My hypothesis was that patients were the most important members of the research team.

I spoke about my lived experience with cancer. The talk was delivered a few days after my five-year-cancerversary so I thanked them all for gathering to celebrate with me. I also spoke about  participating as a partner in research projects. I gave examples of the benefits of patient involvement. And I discussed some of the failures that I had experienced in patient engagement - think tokenism.

Then I had privilege of sitting through the progress reports of the seven projects. From exercise programs to cardiac toxicities there is an amazing breadth of research happening. The workshop ended with sessions on evaluating and communicating results.

Give A Breath 5K

As many of you know I have been training and fundraising for the Vancouver 5K Give A Breath event. What a joy! If nothing else seeing our  merry little band of BC lung Cancer patients out running/walking was thrilling. I had a cough and cold the previous week so I had to come to terms with the fact that I was not going to meet my goal of 30 min 5K. Still I turned in a respectable time and came in second amongst the patients.

The real joy was seeing that we could pull off  an event of this size and see ourselves on the national stage. (Thanks Clare Ford, Tim Monds, and Bev Moir for your leadership.) We had several family teams and a team of oncologists from Coastal Health (Breath Savers was such a good name) as well. For the first time, many folks saw that there was a group of survivors will to speak up and advocate for lung cancer.

Deliberative Dialogues

As I was preparing to go to AACR I received a rather mysterious invitation from CIHR-ICR (Canadian Institute of Health Research - Institute of Cancer Research). I had some recognition of the folks through CCS ACOR (Advisory Council on Research.)  They were the ones who gave me the scholarship to attend AACR. They presented the gathering as an opportunity to discuss strategic priorities for ICR. Other than travel arrangements I didn't have much more to go on than that. About a week before, I received a package of reading material. The list of the attendees was a veritable who's who of cancer research in Canada.

And the penny dropped. I understood what I was being asked to take part in. It was tremendous honour to sit with some of the finest minds in Canadian Cancer Research. We talked about survivorship, cancer treatment toxicities and cancer data management. The results of those discussions are being collated and validated. In the next month or so there will be a summary document released.  It will set out, for the next five years and beyond, the Federal Government direction in funding cancer research.

As I said in my summary note to the organizers - quoting Dwight D Eisenhower, "Plans are worthless, but planning is everything." Frankly that document will be worth only the paper it is printed on. The discussion that went on in those rooms, the connections that researchers made, will persist for years to come.


The fall is looking pretty busy too. I'm thinking it is like the Hunter S Thompson quote:
“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!”

With that in mind, I'll be spending a week in the Cypress Hills with my extended family doing hand to hand combat with Saskatchewan mosquitoes. We will enjoy the benefits of having built in guides to all the sights and wonders of the Hills.

I have taken on a new role with the CMA (Canadian Medical Association) Patient Voices (https://www.cma.ca/get-involved/patient-voice.) I will be flying to Ottawa for my orientation and then attending the Health Summit in late August. The group has already drawn me into some grant review.

I'm back for a few days and then heading to Singapore to the World Lung Cancer Conference held by the IASLC. I will be making a five minutes oral presentation on our patient group research on lung cancer patient fear and anxiety. This trip is again thanks to being the recipient of a scholarship for my attendance. I was initially reluctant because sixteen hours in a plane isn't my idea of fun.  I'm expecting to talk with many people that I have only met on Twitter and Zoom - both advocates and researchers.

There is a possibility of another conference in October - it remains to be confirmed. But in November I'm planning to present a poster at the CCRA (Canadian Cancer Research Alliance) Conference. That poster (https://journey.anguspratt.ca/billion-dollars )will be an updated version of the research that I did for AACR. This trip will involve a side trip to spend time with my son in Kentville as the conference is being held in Halifax.
Is it too much? That is a good question and one I don't have a clear answer to. I seem to have an opportunity to raise awareness around a forgotten stigmatized illness. 25% of cancer death is a result of lung cancer. For too long researchers have ignored the complexity of this disease. That is changing and it is a thrill to be part of the change.

Thanks for your prayers and support.