Remind me not to leave it three months before I write a newsletter. Get a cup of coffee and settle in. There is a lot of water under the bridge and a lot to read.
Before you get started if you want to make a donation to my Run for the Cure campaign the link is: https://support.cancer.ca/site/TR/RunfortheCure/RFTC_NW_odd_?px=12977008&pg=personal&fr_id=28512
Now to the news. From a cancer perspective - "Same old same old." My last scan results came at the end of August. As my doctor walked into the room - he always greets me from the hallway - his words "Nothing new and no growth." were welcome music to my ears.
So I stood up and said, "Well I guess we are done then." Not quite, he does have a symptom and side effect checklist that he runs through and then a physical exam. The funniest part of the exchange came though when I expressed something that had been nagging at me. I love my afternoon naps. Most days I can keep it down to twenty to thirty minutes but lately it has snuck up to two hours a couple of times a week. His response was priceless.
"Mr Pratt," he asked looking down at his chart, "how old are you?"
"Just turned 64."
At which he laughed and said, "It's called getting older."
When I'm caught up in a life limiting disease like cancer I forget that there are other processes going on in my body. And to that end the next thing on the horizon is a colonoscopy.
Several years ago the colonoscopy came up on my calendar as a followup item. I wrote about the experience here in February of 2020. As a terminal patient, I had to decide if I wanted to the risk associated with a procedure that wasn't going to find anything. Fast forward to today. I'm still doing well. The thought of another cancer (colon cancer) has me going to get this checked out. To be clear I'm doing well and this is a precautionary measure.
Two things happen the longer my health is stable. The first is that patients that I am associated with, die. It seems like there has been a rash of them lately. Secondly, I'm becoming more visible in the larger cancer community at local, provincial, and national levels.
When virtual acquaintances die, the traditional forms of grieving don't happen. As patients we aren't invited to a celebration of life or a funeral. We don't have a wake or any of the other public mechanisms to help us with the work of grief. Yet as patients we have shared deep personal moments with them. Now we struggle with a sense of loss and also a foreshadowing of our own death. In the case of two recent deaths the groups involved had to find our own rituals to process the emotions. I have found that the best antidote to the depression is expression. I write a poem that captures the essence of what that person has meant to me. And find ways to share them.
Visibility in the larger cancer community comes with exciting possibilities but also responsibility. Though I have many opportunities to speak, I find more and more that I have only one message. "There is hope for lung cancer patients."
Back in September of 2021 I made a list of pies that I had my fingers in. It was a good exercise that helped me realize a little bit of why I was feeling overwhelmed. So let me take that list and update it.
- CIBC Run for the Cure - My fundraising goal was much more modest this year. The run is on Oct 2nd so it is not too late donate. There will be pictures of pink (and a big White Ribbon.) The link to donate is here (INSERT LINK) Thank you for your support.
- Cancerconnection.ca - I continue to post on the Canadian Cancer Society forum. The lung cancer participation on the forum is growing. It is being recognized as a valuable resource for patients. It does take me close to death a lot but I'm learning to deal with that.
- IASLC - The International Association for the Study of Lung Cancer is the premier body supporting lung cancer research. As part of a Canadian group we submitted an abstract. The topic was the impact of social media support groups on lung cancer patients. I attended other conferences including WCLC, ASCO, and recently ESMO virtually. At the end of this week I will be participating in the North American Lung Cancer conference.
- ILCN - International Lung Cancer News asked me to write an article "Patient Perspective on Genomic Testing." That article and some other involvements have led to an invitation to join the editorial board of that publication.
- The Waiting Room Revolution - The podcast released my recording on their seven keys to managing serious illness last spring. The authors asked me to preview their forthcoming book.
- Advisory Council on Research- For the first time the Canadian Cancer Society has asked patients to sit on ACOR. This council makes decisions about the allocation of grant funding for research. As one of three patients chosen I am both honored and challenged. This group allocates almost 10% of the cancer research funding in Canada.
- Lung Cancer Canada - Our most recent project is a Lung Cancer Summit for patients in BC. With coordination from LCC, we will have Dr Cheryl Ho discussing lung cancer treatment. An exercise physiologist from UBC will join her. They are starting an exercise program tailored to the needs of cancer patients. A dietician and social worker will round out the professional agenda. Several patients will also tell their inspiring stories.
- The White Ribbon Project - My Ribbon has traveled across the country and accompanies me in my travels locally. Not only does it serve as an anti-masker shield, it starts interesting conversations. Still hoping to get a build going somehow.
- BC Lung Cancer group - The little gang of BC Lung Cancer patients has continued to grow. We are mourning the loss of one of the original members. We continue to grow though with two new members this week. I wish this group wasn't growing. The reality is that there is a need for support and discussion amongst lung cancer patients.
- Advanced (Metastatic) support group - The importance of the online support world continues to grow. We have now gone to meeting every week with between twenty to twenty five members. Death also stalks this group with one of the prominent voices dying a few weeks go. The group misses her wisdom, knowledge, and friendship.
- Canadian Lung Cancer Conference - CLCC was held in early July. Asked by Lung Cancer Canada to attend on their behalf I met many oncologists that I had only met online. Some of them were local but many of them were from other provinces as far away as Nova Scotia. My report on the conference is over here.
- Lung Cancer Voices - As a result of my participation I recorded a two part podcast with Dr Paul Wheatley Price. First to tell my story which is in some ways unique but in others, all too common. The second part of the session talked about patient participation in medical conferences. The impact of having patients at conferences, not only to tell our stories is important. It also gives the opportunity to take back the innovations and discoveries from these discussions.
- Canadian Cancer Survivor Network - CCSN has been doing a huge amount of policy advocacy. My involvement began with a campaign coinciding with the Premiers gathering in Victoria. The "Right to Survive" was a recorded Twitter Space drawing attention to the delays in cancer diagnosis and treatment. This gap happened as a result of covid and the restrictions in health care. Economists have estimated that 21,000 patients will die unnecessarily. The lobbying process has carried on with individual presentations to MLAs over Zoom.
- CanBioRx - By teaching cancer patients the ins and outs of lung cancer biology and immunotherapy this program hopes to engage patients in more detailed research projects. I received a scholarship to participate in Montreal in November of this year.
- BC Cancer Patient Engagement - The office organizes a monthly gathering and presents opportunities for engagement . Here is a short list of some of the engagement that has come out of that for me:
- PHSA Office of Patient Quality and Safety Strategy consultation
- Core competencies consultation for Virtual Health
- Study on Delivering Exercise and Nutrition Virtual Programs
- Advance care planning survey
- Male Breast Cancer Access Plan for Hereditary Cancer
I have said many times, my life is more than cancer. One of the great joys of my summer has been reading at the Poetry in the Park open mic each Wednesday night. The eight weeks flew by. As might you might expect some of my poems were very well received - others not so much. But reading in front of a live audience gives that instant feedback. Do people laugh at the places that you expect? Do they give you the strong feedback that says they love it or is the applause the perfunctory - okay next?
I provided a short video to Surrey Muse as well. This took the form of readings from my work as a health activist and as a poet. I featured as an emerging writer. My hope is that it opens doors to greater literary exposure. About an hour and 15 minutes in - https://youtu.be/QOF0AgFyjYI
The 3 day novel contest rolled around again. This is the third time I have tackled it. Though at heart I'm a "pantser" writing from the seat my pants, I did a wee bit more plotting this time. Writing the ending first gave the novel place to go. To my surprise characters emerged out of the writing itself. Once again I accomplished a novella in 3 days of concentrated writing. Meals, sleep, exercise and writing resulted in "Petagian Stalk." 22,000 words describe the forty year hunt for a killer based on rumours that surrounded the killing.
All that to say that I am alive and well and staying active. I ran across the Jewish mourning prayer - kaddish - yesterday. Based in Ezekial 38:23 “‘I’ll show you how great I am, how holy I am. I’ll make myself known all over the world. Then you’ll realize that I am God.’” I'm reminded that indeed my Creator is great in all their overflowing love.