When Sandra asked me how many different advocacy projects I was involved in, I answered "Just a few." When I finished describing them, we scheduled another call to talk about what was happening in her life.
My call was to let her know the results of my latest CT scan. I've been describing it as "good enough." There was a spot flagged by the radiologist. But my oncologist after looked at the scan. After comparing it both with my last one and with the baseline in April of 2019, he thought it was inflammation. He showed me the other tumours that they are keeping an eye on. Then we compared it to the new spot and we agreed it looked very different. So not nothing but not something either. He scheduled the next scan in October.
My son, as I was talking my way through the anxiety leading up to this scan, asked a good question. "Doesn't it get easier Dad as you go longer without progression?"
And the answer is "No." As time goes on, the likelihood increases that this is going to be the one. In my discussion with the doctor we talked about what progression would look like. For me, either there will be an increase in tumour size or there will be further metastasis. The metastasis could go to liver, brain or bone. And so I wait.
Not exactly wait. "A rolling stone gathers no moss." And there ain't no moss on me.
Here is a bullet list of my cancer involvements:
CIBC Run for the Cure - I have almost doubled my fundraising goal. The run is on Oct 3rd. There will be pictures of pink. Thank you for your support.
Cancerconnection.ca - I continue to post regularly on the Canadian Cancer Society forum. The lung cancer participation on the forum is growing steadily. It does take me close to death a lot but I'm learning to deal with that.
STARS - The patient research advocacy training from IASLC (International Association for the Study of Lung Cancer) is drawing to a close. It has been an amazing experience. Learning about lung cancer and its treatments is interesting. More important are the connections with other lung cancer patients and researchers.
WCLC (World Conference on Lung Cancer) - I took part in a wide variety of sessions. I also submittted an oral abstract with Lung Cancer Canada. Conference organizers asked me to provide a patient video response to a study on MAID among patients with lung cancer in Canada.
MAID (Medical Assistance in Dying) video response - Received as powerful and effective, the one minute video took almost two days to complete. The response emphasized the importance of patient's choice . I also took a moment to honour those who had made that choice.
PIP (Patient Involvement Program) - Patients and caregivers in review research proposals with the Canadian Cancer Society. We will jointly review over three hundred proposals to give patient input.
CanREValue - Developing a framework for the use of Real World Evidence is an important step as "big data" becomes available for research. It can potentially provide access to previously difficult questions such as small cohorts for research and hard to justify Phase IV trials.
Lung Cancer Canada - My home from an advocacy perspective, we have conducted three surveys on the effects of covid-19 on lung cancer patients.
Lung Foundation of Canada - Quarterly meetings to gather the lung cancer patient perspective on priorities and advocacy messaging. I got a shock the other day when someone showed me a brochure with my mugshot in it from BC Lung Heath Foundation.
The White Ribbon Project - For those of you who join me on Zoom regularly you have seen the Ribbon on the wall behind me. I take it various places to raise awareness and start discussion about lung cancer. Can't exactly tuck it in my purse.
BC Lung Cancer group startup - Out of The White Ribbon Project, a group of BC lung cancer patients have begun meeting every two weeks for support and advocacy. We are currently looking for a social worker to assist us with facilitation.
Advanced (Metastatic) support group - This group of lovely folk lets me have all the conversations about difficult subjects around cancer that I need to. The group has grown from one (me) to about twelve regular attenders.
I'm probably forgetting a few things but that is most of them. There are a few weeks when it feels overwhelming. Lest you think that I don't have a life outside cancer and impending death. I do. Other commitments include recovery groups and church engagements and my creative endeavours.
I would be remiss if I didn't mention my three day novel. The contest runs over the Labour Day Weekend. I almost didn't do it. I didn't have a good idea despite thinking about it for most of the summer. The plot and character development that I had expected to do hadn't happened. But on the stroke of midnight Friday night, I put my fingers on the keyboard. A few hours later I had 2,000 words and the glimmer of a plot emerging as a sequel to last years effort. By Monday evening I was about 750 words short of my 24,000 word goal, when I waved the white flag. I cleaned up the typos and the egregious errors like characters that changed names mid chapter. I hit SUBMIT on Friday afternoon and another one was history.
I have circulated both last year's and this year's to a few friends for feedback. And so far it has been positive. Who knows, maybe self publishing is in my future or at least circulate a proposal through a few publishers and see what happens.
I've been reading through a few of the epistles this month. Reading 1 Timothy brought back some memories from my university days. I had a roommate that memorized all 1 Timothy over the summer as we studied it as young leaders. I love the freshness of the language in The Message. Paul's admonition to first connect to God is an important one. And the first group that he mentions praying for is leaders. As Canadians face a Federal election tomorrow, it is an important admonition. But even more is the reason he wants us to do it - living simply in contemplation.
The first thing I want you to do is pray. Pray every way you know how, for everyone you know. Pray especially for rulers and their governments to rule well so we can be quietly about our business of living simply, in humble contemplation. This is the way our Savior God wants us to live. (1 Timothy 2: 1-3 The Message)
I hold many of you in my prayers and thoughts each day and this is my prayer for each of you. Thank you for your prayers for me