Eid Mubarak

Wishing my Muslim friends and family an Eid that’s as sweet as the sawine that’s being served.  May this be a blessed year for you.  

It’s warming up for a day or two; more cool weather is on the way, apparently.  It’s cooler than forecast today, and partly cloudy, but otherwise a pleasant spring day.  I’ve been returned to my job as dog bed, with the small monster occupying my lap for most of the day.  He bounces from me to Don and back but he’s apparently in a phase where he needs to be in contact with one of us all the time.  I almost tripped over him a couple of times, not realizing that he was standing right behind me!  Don is busy trying to book vet and grooming appointments for the tiny monster, and set up some other errands including car maintenance and bloodwork.  He’s very good at working to avoid his medical obligations.  I’m quietly reminding him of what he needs to do.  I do NOT nag!

I had a very exciting afternoon today.  I had a short interview with the Canadian Cancer Society to talk about cancer research and how patients could/should be included.  We had a great chat — Don was cheeky enough to tell me that I could talk for hours if anyone would let me — and I thought it was a useful experience.  The researcher asked how I wanted to learn about research; how did I want to be updated, if at all; how often and did I want to interact with researchers.  A study that was done last year with people who had “lived cancer experience” indicated that we did want to know about research that was happening, and there’s a lot more about that.  I said that for me, research continues to provide hope, as it leads to potential new treatments some of which might apply to my situation.  This group, with whom I’ve volunteered to evaluate potential research projects, oversees over 300 projects now, and will be funding another 100 during this year.  I was surprised at how many there are in progress — because this is one group — and in our conversation it became clear that there’s a lot more happening.  I said that I’d like to know what was currently being pursued, how they were progressing, what the findings were showing and so on; given the number, I thought that a dashboard of the existing projects with their statuses would be useful.  There are also some useful videos and training programs that the Society offers that provide more detail on research, the whole investigative process and basic science on genetics and cancer.  

I mentioned to the interviewer a few times that I rely on my oncologist for more information on research and clinical trials, as he’s a valuable source for that.  There is also a database of clinical trials for which patients may register, and loads of information — an almost overwhelming amount— on research and papers.  Much of the details are hard to interpret for someone like myself who is not trained in the more advanced levels of genetics or medicine, but one of the aims of the group with whom I spoke today is to maximize the use of “plain language” in the public-facing literature.  Of course, there’s a balance point, hence the other training materials that are made available to us.  I’m really interested in learning more about the work underway, and the trials that are underway, recognizing that many of them will not be as successful as the groups hoped.  It’s great that I got a chance to interact with these people, and to learn more about the work that’s being done and some of the innovations that are being tested.  I was also pleased to learn that there’s sharing of info across other groups, so not only are Canadian research efforts listed, but there’s access to work in other countries.

I just got back from having dinner with my good friend; it was a lovely mild evening only needing a sweater not a coat!  Always fun to spend time with my friend, and even more to have pretend arguments on minor issues.  Jerry is happy that I am back home, and is currently throwing a couple of his toys around the room and nipping or scratching at Don or me… I’ll just go hide under a blanket until he’s tired out!  Good night!