Duncan Edmonstone
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edmonstone.net
Duncan Edmonstone
@edmonstone.net
95 followers 310 following 210 posts
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)
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Amazing mOS figures from the final trial report of the drug I happen to take... and there are better drugs on the market now and in phase 3 trials. Reassuring to know how fast treatments are improving in the ALK+ NSCLC space #LCSM #CANSKY
#ALEX study shows 81.1 month median OS in final report of study from Tong Mok

Amongst the longest overall survivals reported in lung cancer. Further trials of 3rd and 4th gen TKI ongoing. Much work to do, but valuable to reflect on how far things have com

#ESMO25 #LCSM #Alk #NSCLC
That's how I started, and now I have the advocacy bug!
This! Every patient is an advocate, even if just for their own care, and all our experience is of value to someone, somewhere in the whole treatment environment. It starts with telling your own story and then listening to others, and *every* patient can do that.
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!
Reposted by Duncan Edmonstone
The new ALKnowledge site is live – an expert-led, interactive resource on ALK+ lung cancer for patients and professionals.

Visit now 🌐 alknowledge.org
You missed the key part in that exchange... Humpty Dumpty's response to Alice's question. Surprisingly deep lessons buried in a children's book.
I know everyone's an expert after the fact, and I'm sure you have your reasons, but for anyone in Cheshire, you should really start any train journey from Crewe. It's better connected with more options than anywhere else in the Northwest, including the major cities.

Otherwise, I 100% empathise.
After a 2-year break where the walk clashed with other happenings, we are doing the Walk of Hope for The Christie Charity this year. No pressure, but if you can spare a little, it's a very worthy cause. I wouldn't be here today without this excellent hospital!
www.justgiving.com/page/kay-edm...
Kay & Duncan’s fundraiser for THE CHRISTIE CHARITY
Help Kay Edmonstone raise money to support THE CHRISTIE CHARITY
www.justgiving.com
There’s a glut of posts on LinkedIn about moving to Dubai… I’m always tempted to post the response “cool story bro, who are you going to vote for when you’re there?”
But maybe they’re not focused on the brain for your scans
Oh… for PET scans I was told that after the radioactive glucose is injected you have to sit quietly and not engage your brain… this is so the brain doesn’t pull the glucose to it to feed it… this prevents hot spots covering potential malignant sites or showing up as false positives…
CTs are too short… MRIs are too noisy. PET though… that wait after they put the rad-juice in you… yep I usually fall asleep then.
I did see your first book in Waterstones Manchester once… so they did have a few copies (more than 2 I think). I already had my copy from the initial unbound run… did you at least get paid for that first run?
The rest of the essay is bitterness that $$ isn’t being spent where he thought it should be. And I don’t recognise the “hope is for dopes” message at all. Hope is all that sustains an awful lot of patients. Maybe my view is coloured by not living in a country where healthcare is for-profit.
Interesting read. As a stage 4 patient I recognise/understand the sentiment, especially about there being “no money in finding a cure”. I presume this was why you posted this (with govt funding which went to academic research being cut, we are now more than ever in the hands of private enterprise)
Just putting down this marker. At some point in the near future, some right wing edgelord will bring back the Hitler moustache
So basically a bunch of losers who spent their teenage years playing video games and masturbating to porn are mad at some people who didn’t do that?
A 700/96 terminal is probably era-appropriate for a lot of HP3000 systems. Hard to come by though:

terminals-wiki.org/wiki/index.p...
HP 700/96 - Terminals
terminals-wiki.org
I’m not sure whether the current owners of Reflection (OpenText) provide a free version.
Pretty sure Reflection terminal emulator software supported a bunch of old HP terminal types from this time. I recall using it with HP9000 systems which are mostly the same as HP3000 apart from the OS. There’s an old copy on archive.org
Internet Archive: Digital Library of Free & Borrowable Texts, Movies, Music & Wayback Machine
archive.org
Important things about today:

1. It’s our wedding anniversary- 27 years of wedded bliss!
2. It’s exactly 6 years since I went under the knife for brain surgery to remove a golf ball size tumour. Have a close look at my avatar photo for the results of that!
3. It’s World Lung Cancer day
These sorts of stories make me so mad. There’s no simpler way of saying it, relying solely on “alternative medicine” kills people. By all
Means have your “coffee enemas” if it makes you feel good, but have it as well as, not instead of your chemotherapy.

www.bbc.com/news/article...
Woman who died after refusing chemo had daily coffee enemas
Paloma Shemirani's brothers blame their mother's anti-medicine conspiracy theories for her death.
www.bbc.com
I love my Filco Cherry MX Blue keyboard, but everyone within 10 meters of me hates it (I'm a heavy-handed keyboardist anyway, and then add the click of the MX Blues, and it's *noisy* when I'm working).
“Why I love the sounds of the rock and pop festival the local rugby club in my little Cheshire town put on every year” by Russ Jones - we know how much you love someone singing a Coldplay track out of tune and out of time.