Duncan Edmonstone
@edmonstone.net
UK-based lung cancer patient advocate. Used to work in IT. Progressive.
(Don’t try and visit edmonstone.net there’s nothing there right now)
(Don’t try and visit edmonstone.net there’s nothing there right now)
Sigh... suspended from Facebook by their dumb AI algorithm
No big deal right?
For me, it cuts me off from all of my cancer support groups, hosted on the platform.
Can't contact anyone directly at Meta to appeal... "services" to help you get your account back are scammers... not my first rodeo!
No big deal right?
For me, it cuts me off from all of my cancer support groups, hosted on the platform.
Can't contact anyone directly at Meta to appeal... "services" to help you get your account back are scammers... not my first rodeo!
October 17, 2025 at 10:22 AM
Sigh... suspended from Facebook by their dumb AI algorithm
No big deal right?
For me, it cuts me off from all of my cancer support groups, hosted on the platform.
Can't contact anyone directly at Meta to appeal... "services" to help you get your account back are scammers... not my first rodeo!
No big deal right?
For me, it cuts me off from all of my cancer support groups, hosted on the platform.
Can't contact anyone directly at Meta to appeal... "services" to help you get your account back are scammers... not my first rodeo!
Today is 6 years since a Dr in A&E (ER for those in US) told me “you have 2 legions in your lungs, and 1 in your head that caused the seizure - we won’t know until more tests are done, but it looks like lung cancer”. This photo was taken 4 days later after I got out of hospital. 1/2
July 2, 2025 at 7:13 AM
Today is 6 years since a Dr in A&E (ER for those in US) told me “you have 2 legions in your lungs, and 1 in your head that caused the seizure - we won’t know until more tests are done, but it looks like lung cancer”. This photo was taken 4 days later after I got out of hospital. 1/2
Well, I’m in Facebook jail. Of course I haven’t done what I am accused of (breaking Meta’s cybersecurity guidelines), but it doesn’t seem to matter… 1/n
June 30, 2025 at 10:36 AM
Well, I’m in Facebook jail. Of course I haven’t done what I am accused of (breaking Meta’s cybersecurity guidelines), but it doesn’t seem to matter… 1/n
Well everyone else is doing it, so... how I arrived on BlueSky
April 23, 2025 at 8:24 AM
Well everyone else is doing it, so... how I arrived on BlueSky
Interesting review of the current state of liquid biopsies in treating cancer. Both current use-cases and potential future ones. The language is bit heavy for a layman, but you can still get the gist:
www.journalofliquidbiopsy.com/article/S295...
www.journalofliquidbiopsy.com/article/S295...
April 22, 2025 at 6:55 AM
Interesting review of the current state of liquid biopsies in treating cancer. Both current use-cases and potential future ones. The language is bit heavy for a layman, but you can still get the gist:
www.journalofliquidbiopsy.com/article/S295...
www.journalofliquidbiopsy.com/article/S295...
I'm 55 in May and as someone with a high likelihood of a much reduced lifespan (thanks cancer), I was planning to start taking a little out of my pension. Might put that off a little longer now (thanks President Cheetos)
April 3, 2025 at 8:19 PM
I'm 55 in May and as someone with a high likelihood of a much reduced lifespan (thanks cancer), I was planning to start taking a little out of my pension. Might put that off a little longer now (thanks President Cheetos)
It's #RareDiseaseDay 2025
What is a rare disease? One that affects < 1 in 2000
My cancer is rare enough that its prevalence isn't tracked nationally. From research I have done with a charity, we think there are less than 200 people diagnosed annually and less than 2000 patients across the UK.
What is a rare disease? One that affects < 1 in 2000
My cancer is rare enough that its prevalence isn't tracked nationally. From research I have done with a charity, we think there are less than 200 people diagnosed annually and less than 2000 patients across the UK.
February 28, 2025 at 9:17 AM
It's #RareDiseaseDay 2025
What is a rare disease? One that affects < 1 in 2000
My cancer is rare enough that its prevalence isn't tracked nationally. From research I have done with a charity, we think there are less than 200 people diagnosed annually and less than 2000 patients across the UK.
What is a rare disease? One that affects < 1 in 2000
My cancer is rare enough that its prevalence isn't tracked nationally. From research I have done with a charity, we think there are less than 200 people diagnosed annually and less than 2000 patients across the UK.
Spent a bit of time this week updating my estimate of the # of ALK+ patients on a TKI in the NHS in England. A summary graph is attached. More details and my original numbers on this from a year ago are available here: drive.google.com/file/d/1r8JH...
February 8, 2025 at 9:32 PM
Spent a bit of time this week updating my estimate of the # of ALK+ patients on a TKI in the NHS in England. A summary graph is attached. More details and my original numbers on this from a year ago are available here: drive.google.com/file/d/1r8JH...
Well my kidnappers are screwed, but I suspect I am as well.
January 5, 2025 at 9:17 AM
Well my kidnappers are screwed, but I suspect I am as well.
Our cats partied too hard on NYE - all day snooze required.
January 1, 2025 at 12:11 PM
Our cats partied too hard on NYE - all day snooze required.
Christmas indulgences…
December 25, 2024 at 5:40 PM
Christmas indulgences…
Evening palette cleanser. One of our cats considering if he should start his own podcast series
December 5, 2024 at 9:53 PM
Evening palette cleanser. One of our cats considering if he should start his own podcast series
- patient - 5 years with stage 4 non-small-cell lung cancer (ALK+)
- anything with chocolate
- chairing the England & Wales National Lung Cancer Audit Patient & Public Involvement Forum - ensuring lung cancer treatment data is reported in a patient-friendly manner
- anything with chocolate
- chairing the England & Wales National Lung Cancer Audit Patient & Public Involvement Forum - ensuring lung cancer treatment data is reported in a patient-friendly manner
December 3, 2024 at 8:20 PM
- patient - 5 years with stage 4 non-small-cell lung cancer (ALK+)
- anything with chocolate
- chairing the England & Wales National Lung Cancer Audit Patient & Public Involvement Forum - ensuring lung cancer treatment data is reported in a patient-friendly manner
- anything with chocolate
- chairing the England & Wales National Lung Cancer Audit Patient & Public Involvement Forum - ensuring lung cancer treatment data is reported in a patient-friendly manner
Presenting at Greater Manchester Cancer Alliance PPI Forum on my experience as part of the Early Diagnosis of Symptomatic Lung Cancer working group and the LungAware chatbot - lungaware.co.uk
December 2, 2024 at 2:19 PM
Presenting at Greater Manchester Cancer Alliance PPI Forum on my experience as part of the Early Diagnosis of Symptomatic Lung Cancer working group and the LungAware chatbot - lungaware.co.uk
Can't believe I hadn't seen this before. Thank you to @thankscancer.bsky.social for sharing. I wasn't just scratching my head, my head was spinning!
November 28, 2024 at 6:04 PM
Can't believe I hadn't seen this before. Thank you to @thankscancer.bsky.social for sharing. I wasn't just scratching my head, my head was spinning!