Stuart Selby

...I'm both inspired by and profoundly thankful for the dedication, exceptional care, and guidance from Dr. M. D. Cusimano, @gliomadoc.bsky.social‬, and teams at St. Michael's / @unityhealthto.bsky.social ‬ and @sunnybrookhsc.bsky.social ‬who ensured I'm here to share this story. Thank you!!! #BTSM

Living with brain cancer: 'It’s given me more compassion for people and their own experiences'

I was recently interviewed by Angelica Bottaro at Healthing.ca, who created this piece which shares my #braincancer story more widely. I'm mindful that this is published on #WorldBrainDay2025 , and glad to have had the chance to share with others! #BTSM
www.healthing.ca/brain-cancer...

Thanks, @theabta.bsky.social and the incomparable @thelizarmy.bsky.social for today's engaging webinar on participating in research and the clear message that we can all participate! Liz, I love your reminder that we all have the capacity to be curious and become researchers as we explore! #BTSM

I'll catch up on tonight's chat a little later, when I'm back at my computer and better able to take in the conversations, so don't be surprised if I chime in with a reply or more thoughts tomorrow or later in the week! #btsm

A4. I'm energized by people I meet along the way. Living with #braincancer is a really tough way to meet the most amazing people, but it's worth it! I'm only about a year into my proper advocacy path but I keep learning and growing along the way; my advice is to keep at it and grow as we go #BTSM

A3. We don't have a direct Canadian equivalent of @braintumor.org 's Head To The Hill but I think it's a great approach! There's much we can learn from different organizations where we grow ideas to fit our local needs while collaborating and sharing internationally. #BTSM

A2 I see a gap in fundamental #braintumor and #braincancer research funding, where early research can find game-changing discoveries that will better tomorrow's outcomes. By advocating for funding, both public / government, and private, we can make a lasting impact for the future! #BTSM

A1 ctd. As I become more active in volunteering and learn more about Health Economics and Health Equity topics, I'm driven to keep doing and learning more. When we work together, we can make much-needed progress! We build hope when we come together as a community! #BTSM

Brain Cancer Canada - Accelerate | Advocate | Transform Dedicated to funding research and neurosurgical technologies for pediatric and adult primary brain cancers.

A1. I volunteer with Brain Cancer Canada (www.braincancercanada.ca) on the Scientific Advisory Cttee as we fuel research through grant funding, and I participate wherever I can with Canada's Drug Agency ( @cda-amc.bsky.social ) to stay connected with health care delivery in Canada. #BTSM

Hi, everyone! I'm Stuart, also joining by the orange bubble in the @btsmchat.bsky.social account, and introduced there. I'm here to join in the conversation, though I've scheduled my posts with @buffer.com while away from my computer, so I might not reply to any other comments for a while! #BTSM

Ethan Embry, as Mark, in Empire Records.

I hope everyone is having a good Rex Manning Day today 😃🎸

Happy RMD @ethanembry.bsky.social !

#RexManningDay

On April 2nd I spoke at an art auction hosted by McMaster University's Students Advancing Brain Cancer Research; I describe it and the importance of funding #braincancer research in a TikTok at vm.tiktok.com/ZMBCCXdce/ #btsm

Thank you, for hosting this first chat over here. This was a useful and valuable topic, I've already added some good finds to my list for future reading and consideration. Thanks for the #btsm #skychat!

That's a great insight - while I've seen AI sneak into other areas of my life, I hadn't thought of how it might impact trustworthiness of information I'll see in the future, it's another thing to consider and cross-check when we find future new resources! #btsm

A4. Maintaining open access to updated information might be a challenge but I don't think it will be insurmountable. An easy thing we can all do is to share when we see new information or resources that can benefit our community. #BTSM

I'm happy to have my posts cross-posted / shared without restriction, and I'll plan to join for the chat on X also :-) #BTSM

A3 (4) The book Zero to Birth by W. A. Harris taught me much about how our brains develop and left me fascinated, while helping me better appreciate how brain tumors interfere with this organ where we form our whole existence. #BTSM

A3 (3) I'm biased as a volunteer and Ambassador with Brain Cancer Canada but our newly updated site at braincancercanada.ca has great information, stories, and links to many Canadian resources for those with malignant brain tumours ( #braincancer ). #BTSM

These are another two books I've not come across yet, but will add to my list! Thank you for sharing - I already feel drawn to Living Low Grade by the title alone, thank you! #btsm

I've not come across these books yet, so I'm going to add them to my growing reading list, thanks for sharing them! #btsm

A3 (2) For a non-clinical read, Sophie Kinsella's fictional autobiography "What Does It Feel Like" felt relatable, it gave me hope about my experiences being able to be understood by others, when I didn't want a science lesson. #BTSM

Brain Anatomy and How the Brain Works The brain is an important organ that controls thought, memory, emotion, touch, motor skills, vision, respiration, and every process that regulates your body.

A3 (1) For early understanding of the anatomy of the brain, I found the Johns Hopkins Medicine page at https://www.hopkinsmedicine.org/health/conditions-and-diseases/anatomy-of-the-brain to help as I learned about what my new diagnosis was going to impact. #BTSM

How to Evaluate Trustworthiness in Science These days, anyone can write or talk about science and health topics, no matter how much or how little about the topic they actually know. Here are some questions we’ve put together to help you evalua...

A2.c) NIH has a helpful guide on how to evaluate trustworthiness: https://www.nih.gov/about-nih/what-we-do/science-health-public-trust/perspectives/how-evaluate-trustworthiness-science #BTSM

A2.a) PubMed (https://pubmed.ncbi.nlm.nih.gov/) and resources shared by experts I follow. @neuroonc.bsky.social and their podcast are great for science & clinical practice.
b) Current peer-reviewed evidence tops my list.
c) Checking references and disclosures, review numbers and statistics. #BTSM

A1 for clinicians - I'm not a clinician myself, but as a patients, I've mostly received pointers to regional support groups and charitable organizations from my clinicians... It's been less about current science until I get talking with receptive care partners... #btsm

A1. I'm interested in new research, looking to future hope, AND to best understand pros/cons of today's options and standard of care so I can make informed decisions for care both today and in the future #BTSM

I'm Stuart, from Toronto, Canada, living with Grade 2 Oligodendroglioma since 2022, on Vora (post-surgery but no chemotherapy or radiation therapy, yet), here for the community! #BTSM

I'll be there 🥳

It's a comprehensive list, without any others I know of to add.

Brain Cancer Canada - Accelerate | Advocate | Transform Dedicated to funding research and neurosurgical technologies for pediatric and adult primary brain cancers.

NEW SITE! www.braincancercanada.ca

NEW! Researchers & Scientists: www.braincancercanada.ca/researchers-...

NEW! Patient & Caregiver Resources
www.braincancercanada.ca/patient-care...

NEW! Projects Funded
www.braincancercanada.ca/projects

NEW! Community
www.braincancercanada.ca/community