@debmaskens.bsky.social
Cancer patient advocate. Canadian. Interested in patient involvement in cancer research, evidence-based advocacy, shared decision making globally. #cansky #oncsky #kcsm #kidneycancer #shareddecisionmaking
I think the way you win is to survive... and to live a full life as healthy as you can be.
Perspective of a long-time #kidneycancer survivor...not NED.
Wish you well.
Onwards indeed Sid. I wish there was wisdom to share to make this easier.
One aspect of #kidneycancer care that has been under-appreciated is the huge psychological burden across all stages of disease. The NEDs, the CRs report equally high levels of distress, fear of recurrence...
#scanxiety
Tons of respect for patient advocate Joyce Graff and all she has done for the #VHL and #kidneycancer communities globally. Was instrumental with @ikccorg.bsky.social with connections around the world.
Thank you @smartpatients.bsky.social
That third point. Amazing that it has to be said, but yes. In an era of #shareddecisionmaking, patient preferences require a thoughtful discussion of patient goals, expectations, risk tolerances. What matters most to you? #GU26
At the German Cancer Congress last week, Karin Kastrati presented about the CARE1 Pragmatic Clinical Trial. We’re proud to support this important work. #KidneyCancer
Really an excellent example of how country-specific data within the @ikccorg.bsky.social Global Patient Survey can identify variances, gaps, and work to address unmet needs for patients with #kidneycancer
I hear Canada made a similar presentation recently at Canadian research meeting. Good to hear
Especially in the US where DTC (Direct to Consumer) drug marketing is rampant... one of only 2 countries where DTC is legal. The other one, surprisingly... is NZ.
Kudos to @htaiorg.bsky.social and the Patient and Citizen Involvement group (PCIG), book editors and the many contributors. This is quite the comprehensive volume on #HTA with many global perspectives.
#patientengagement
#healthtechnologyassessment
#globalhealth
New open access book “Patient Involvement in Health Technology Assessment” has just been published (Jan 2026) on link.springer.com/book/10.1007.... @htaiorg.bsky.social @ippin.bsky.social
Couldn't stomach listening to speech. But loved this:
“Our stock market took the first dip yesterday because of Iceland, so Iceland’s already cost us a lot of money,” he said.
"Canada thrives because We Are Canadian". 🍁 💪
The Mark Carney Davos speech that everyone is talking about: www.youtube.com/watch?v=uStu...
The speech that rang around the world.
#MarkCarney
#Davos
#Canada
What should I be doing?
Keep going!
One step at a time.
And definitely celebrate the wins along the way -- they balance out other moments of uncertainty.
#cansky #stage4
Brilliant. "Not bravery. Not optimism. Familiarity. Learning the terrain well enough that fear no longer had the upper hand"
Thank you for sharing.
#cansky #survivorship #oncsky
I'd like to leave the cancer behind. Period.
#cansky
#survivorship
#hope
This is important. Please share.
"What do Ontario NDP, Liberal and Green MPPs have in common? Pharmacare...
...This morning, we sent a letter to the Premier and Minister Jones calling on our province to join the national plan for birth control and diabetes."
#OnPoli #OnHealth
Fantastic work to improve standards for Patient Reported Outcomes, QoL across #clinicaltrials for all types of #cancer. Toolkit will be welcomed by patient advocates globally.
We can and must do better for patients than "well tolerated". Two words that carry little meaning.
#oncsky #cansky
Please don't be ashamed. Some of us don't know we have hit a wall until we hit it (hard)... and then we have to step back.
You are human.
Thank you for sharing so openly.
Interesting study re reducing risk of #kidneycancer in general population and amongst higher risk groups. One more piece of prevention puzzle? So many confounding factors...dietary recall a big one IMHO.
#cansky
Laughing because I have absolutely no idea what you're talking about!
End of year here is for holidays, family, charitable giving...
#cansky
We talk about survival,
Patients talk about life.
We must learn patients’ language…
An important read from @thelancetoncol.bsky.social that will resonate with patient orgs and cancer patients and caregivers globally. Towards a more human-centred approach that allows for compassion, psychological support, dignity. Bravo!
#cansky #shareddecisionmaking
#Qol
They are no joke. I have tried though:
I fell over a small blind dog. I was his seeing eye human... the one who was supposed to avoid the curbs and hazards. Can't make this up. No ice. Just stumbled.
Dog was fine...
All in for November as Fall Prevention Month! I tripped and fell 4 years ago, hit my head on sidewalk. Took me 6 months to drive again, $$$ in vision therapy, physiotherapy. Had no idea a simple fall could have such consequences!
#concussion
IKCC kindly invites you to complete the survey by Friday, 7 November 2025. It takes less than three minutes. forms.office.com/Pages/Respon... @GlobalCCN_org (2/2)
LAST CHANCE TO PROVIDE YOUR OPINION. Following an event at #ESMO25 in Berlin, the Global Cancer Coalitions Network (GCCN) and Ipsen are running a survey on Shared Decision-Making in Oncology. (1/2)
More for Dark Age 2.0...
Scientists had to change more than 700 grant titles to receive NIH funding. www.statnews.com/2025/10/29/n...
"They are trying to make people afraid to use the word ‘equity.’ They’re trying to make people afraid to use the term ‘transgender.’"
Congrats to @uiccofficial.bsky.social and 88 international authors for this new educational resource. Pleasure to join the panel today to represent cancer patients, advocates, charitable orgs. Moderated by the insightful @avisfavaro.bsky.social
#carrythefire
#princessmargaretfoundation
#Cancer
So here's a response: use the postage-paid envelope (tape to their large envelope) and mail the whole thing back...at their expense.
If enough people did this, maybe, just maybe they would stop? Otherwise it all ends up in the landfill. Agree/disagree?
Anyone else want this unsolicited garbage to stop being sent in the mail? This from the "Cancer Research Society" in Ottawa. Huge envelope. Junk. Socks. Gloves. Returning it all. #cancer #fundraising
cancerresearchsociety.ca?gad_source=1...