Challenges and Choices

I won’t lie. This past month has been a challenging season, due to pain, nausea, fatigue and breathing challenges. Living with cancer can be very challenging, but thankfully the pain, nausea and fatigue are improving. I’ve had to hunker down and rest a lot, but am thankful to still be able to spend a little time with people, get some exercise and continue to do some advocacy work. We don’t get to choose all of our life circumstances, but we often get choice in how we respond. We can control the things we can control. Choosing to give thanks even in the midst of challenges can be a real game changer.

The upper endoscopy which happened the end of September (mentioned in the previous post) went well. We learned that my esophagus (food pipe) had narrowed to the size of a pin prick. No wonder swallowing was so challenging! The next day the phone rang with an appointment for a stent to be inserted in my esophagus the day after. A stent is a flexible tube to help keep the esophagus open to make it easier to swallow food and drink. I was very thankful for the opportunity to take advantage of a cancellation and get this taken care of quickly. That procedure was harder on me than I anticipated, and I slept for some time in the hospital afterwards. I’m thankful for Jackie Manthorne, President and CEO of Canadian Cancer Survivors Network (pictured below) who waited patiently, helped get my prescription meds and got me home safe and sound. So many people have supported by driving to and/or from appointments. What a good gift! Because this time was such short notice I put a request out on facebook, and had multiple offers within a few minutes. Thanks also to Robyn Denis who drove me to the appointment. So many have offered and have driven, and you have no idea how much it means. Thank you!

Awesome advocate Jackie September 2022
Kim Andrea and Robyn – awesome advocates. Photo credit: Chris Draft 2019

I’m very grateful that swallowing is so much easier than it was in September. In addition to liquids and puréed foods, I can carefully chew and swallow soft foods. This helped make (Canadian) Thanksgiving Dinner much more enjoyable. Very thankful for my middle child and her boyfriend who cooked a delicious vegan dinner for us. There was tons of food, mostly on the kitchen counter since it would not all fit on the table. I still eat very small portion sizes, and could not finish all the yummy veggies on my plate that evening.

Canadian Thanksgiving 2022
Canadian Thanksgiving 2022

I’m also incredibly thankful for the gorgeous weather we’ve enjoyed this Fall. I went out walking as much as I could, often with my youngest who I’m so grateful for, and our big sweet dog. Here is some of the beauty we’ve been able to enjoy this past month.

Today I’m especially thankful for two dear friends who popped by this afternoon. We are blessed with so many good people who generously support us. Love and support can make a world of difference, especially during the challenging seasons, and I can’t tell you how much that means.

Could I challenge you to choose a friend or neighbour to reach out to with love and support in the next few weeks? This does not need to be someone affected by cancer, but could be someone going through a difficult season. Please never underestimate the difference you can make for someone!

November is Lung Cancer Awareness Month! What is your Cancer Centre doing to celebrate survivors and raise awareness?

Happy Cancer Survivors Day! advocacy + brief health update

Happy Cancer Survivors Day! Cancer affects so many of us, whether directly or indirectly, and it’s exciting that right now the biggest cancer conference in the world (ASCO) is happening in Chicago and online because more research means more survivors and better survivorship.

There is much talk of new treatment options and potential cures, and I can’t tell you how thankful we are for research and all involved in the research process. Just over a week ago, terrific Canadian ribbon makers, Lisa and Bill Weir and awesome advocate Chris Draft and I were representing The White Ribbon Project, speaking to a group of the lung team members from a pharma company, communicating how thankful we are for the research they do, and how important research is to the lung cancer community. What a difference research makes! #ResearchMatters

This pharma company team did a terrific job all around. They were well-organized and effective communicators who sent a thoughtful and well-written thank you email afterwards including promises of ongoing partnerships. What a great day! The pharma company teammates made White Ribbons together with those three team members from The White Ribbon Project who were able to go in person and be at the same place to make ribbons together. I would have travelled there too had I been able, but instead very thankful that they effectively set things up so I could speak online.

Speaking of my health, I’m still on oxygen and we don’t know why there is still shortness of breath.

Dr. Nicholas, my oncologist, suggested it could be good to take a break from chemo to see how my body responds and also the cancer. Last week’s CT scan showed that the cancer remains stable or improved – great news! I still have shortness of breath, but most days am feeling much better, so that’s a real plus.

Dr. Nicholas has been working on discerning a good path forward. I may be able to participate in a clinical trial which may start in Toronto in the Fall, but there are still more hoops to jump through before this can happen. I’m very thankful for Dr. Nicholas who works very hard for his patients.

Celebrating cancer survival together with the awesome Andrea Redway on her seventh cancer-versary! Over fifteen years of survivorship (and two metres) between us!

Andrea (above) is also a patient of Dr. Nicholas. Here she is, celebrating her seventh “cancer-versary”, also on the same day as the ribbon build! When she was first diagnosed, the cancer had already spread through her body and she was very close to death. She and her husband advocated for her to get the life-extending surgery she needed, and a less experienced surgeon was willing to do it even when a more experienced one was not. Together with Dr. Nicholas, Andrea and Michael looked possible treatment options and talked about immunotherapy back in earlier days when it was not so common. He was quick to get the paperwork done and Andrea is alive and doing well seven years later. She is an amazing advocate and we are so very grateful for her and the good care she has received.

It matters to keep holding onto hope and continue advocating for more research and for advances in research to get to people who need them. Researchers are working hard to find cures. Research advocates have an important part to play, representing survivors, patients, their family, loved ones, and the public. It is important that we are trained and well educated so we act like professionals and work effectively.

Another meeting I got to be part of that same day was with the team that is working on Canadian Cancer Clinical Trial Network’s (3CTN) Precision Oncology Map that some of you may know about. Last Fall the Canadian Cancer Clinical Trials Group earned the Bayer Precision Oncology Patient Innovation Award grant of $25,000 and is using it to improve clinical trials for people living with cancer in Canada. 

This team has been working to develop a map of all the Canadian cancer clinical trials so that patients, caregivers & clinicians can more easily find suitable trials and researchers & sponsors can search for gaps where more trials are needed. We are still looking for feedback on how user-friendly the current test version is, and if you are interested, you are welcome to help.

If you would like to look at the map and potentially give feedback, please click on the link below and explore the map, then send a brief email info@3ctn.ca with your thoughts about strengths, weaknesses and suggestions for improvement. Precision Oncology Map: https://app.powerbi.com/view?r=eyJrIjoiNmM2MmE0NmQtMGI5OC00NDdjLTgxMzMtM2ZmNzQwYjRkMjM3IiwidCI6IjlkZjk0OWY4LWE2ZWItNDE5ZC05Y2FhLTFmOGM4M2RiNjc0ZiJ9

Below are some pictures from that awesome build mentioned above. Thank you to Lisa and Bill Weir (with the great tee shirts), Amy Hayes, Lorraine Hudson, Grace Oha, Lung Ambition Alliance, AstraZeneca and the awesome advocate and photographer, Chris Draft. Great day! Thanks also to Heidi and Pierre Onda, founders of The White Ribbon Project.

Bill and Lisa Weir, Lorraine Hudson, Amy Hayes, Grace Oha

#hope

#The White Ribbon Project

#lungcancerawareness

#sensibilisationaucancerdupoumon