iiinova — where your digital self keeps evolving

Now I am retired I have a very small circle of friends who I see very infrequently. I *like* it this way. The solitude is something I appreciate. My wife is different, but isn’t asked or required to change her life to suit my misanthropy!

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Duncan Edmonstone @edmonstone.net · 2h

Feels like there’s something missing here - through all of this I don’t see any of these wives who supposedly put the weight of their husband’s social engagement on themselves actually asking these husbands what *they* want? 1/2

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Duncan Edmonstone @edmonstone.net · 13h

Look up Nationalsozialistische Führungsoffiziere (NSFO). That should give you a good idea.

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Duncan Edmonstone @edmonstone.net · 24/09/2026

Re: appointment letter - was this the NHS, or was it Royal Mail? Lots of instances in my neck of the woods of folks missing appointments due to RM totally failing in their universal service obligations (only delivering mail 2-3 days a week). I get texts and emails for all my appointments as well.

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Duncan Edmonstone @edmonstone.net · 22/09/2026

We already see quite a few patients tipping over from pre-diabetic to diabetic. More needs to be done!

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Duncan Edmonstone @edmonstone.net · 22/09/2026

For example, some clinicians can be quite casual about the weight gain associated with Lorlatinib, but if you are living many years longer, quality-of-life issues like this become much more important for patients.

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Duncan Edmonstone @edmonstone.net · 22/09/2026

Further, those who get past the first two years of treatment are highly likely to get many more years on Lorlatinib after that. What I'm keen to see more of from clinicians is continued acknowledgement of, and new ways to manage, some of the more severe Lorlatinib side effects.

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Duncan Edmonstone @edmonstone.net · 22/09/2026

An excellent summary of the latest CROWN study results. 7 years in, Lorlatinib still hasn't reached median PFS (the point at which 50% of patients in the Lorlatinib arm of the trial have progressed). alknowledge.org/latest-news/...

alknowledge.org

Latest News - ALK

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Duncan Edmonstone @edmonstone.net · 21/09/2026

This seems like the sort of thing @doctorow.pluralistic.net likes to talk about. The UK should follow France's lead and start the long (painful) process of regaining our digital sovereignty.

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Duncan Edmonstone @edmonstone.net · 19/09/2026

Are you trying to relive lockdown?

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Duncan Edmonstone @edmonstone.net · 09/09/2026

I got shushed by another passenger for saying “woo-oo spooky” in these caves.

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Duncan Edmonstone @edmonstone.net · 09/09/2026

Makes sense. The only numbers I can recall are my own and my wife’s mobile. I’d have to trust to iCloud for the rest (and I don’t especially like trusting big tech companies).

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Duncan Edmonstone @edmonstone.net · 08/09/2026

Family & friends in other countries all call us on WhatsApp.

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Duncan Edmonstone @edmonstone.net · 08/09/2026

Got rid of our landline when we moved to fibre broadband. We had a handset that stored a very long history of calls and we realised in over a year the only calls received were scamming autodiallers. Even my 88yo MiL calls my mobile.

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Duncan Edmonstone @edmonstone.net · 07/09/2026

The best analogy for this I heard was “it’s like being dropped in the middle of a foreign country where you don’t speak the language and you don’t have a map”. Definitely why support groups are so important.

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Duncan Edmonstone @edmonstone.net · 02/09/2026

Sean Connery again proves he is the best actor at playing Sean Connery 😆- to be fair, though, this was a perfect role for him, and the rest of the cast are also excellent. Especially loved Tim Curry (RIP). Of course, the weird thing about it is the complete lack of females! 90s were a different time

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Duncan Edmonstone @edmonstone.net · 25/08/2026

I simply wouldn't still be here if it weren't for this hospital and the wonderful people who work there.

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Duncan Edmonstone @edmonstone.net · 25/08/2026

The first time Kay did it, I was still too sick to take part, so the fact that I've gone on to do it with her every year since (apart from one we couldn't make due to other cancer-related commitments) is a testament to what the Christie Hospital can do for cancer patients.

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Duncan Edmonstone @edmonstone.net · 25/08/2026

I'm doing my 5th and my wife is doing her 6th Walk of Hope for The Christie Charity - which raises funds for the world-famous Christie Cancer Hospital in Manchester. Please consider a donation! www.justgiving.com/page/duncan-....

justgiving.com

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Reposted by Duncan Edmonstone

Sid Sadler @sadlersnaps.bsky.social · 25/08/2026

When someone asks how I got involved in advocacy. #Cansky

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Duncan Edmonstone @edmonstone.net · 24/08/2026

lol, check the beard - I don't have razor blades in the house!

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Duncan Edmonstone @edmonstone.net · 24/08/2026

Yep, my (now deceased) father-in-law - a 1950s teenager - had razor blades in his shirt collars.

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Duncan Edmonstone @edmonstone.net · 20/08/2026

The latest versions of macOS (Tahoe - 26.x) are a no-no on pre-2019 Macs though, even with OCLP.

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Duncan Edmonstone @edmonstone.net · 20/08/2026

I have a ~2017 Intel-based iMac that I'm able to get right up to Sequoia 15.7.9 with OCLP

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Duncan Edmonstone @edmonstone.net · 20/08/2026

I assume you've used OCLP to bring it as up-to-date as possible MacOS-wise?

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Duncan Edmonstone @edmonstone.net · 01/08/2026

This is the last thought I will be giving to cancer today, as I have something much more important to celebrate- today is our (me & Kay) 28th wedding anniversary! 10/10

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Duncan Edmonstone @edmonstone.net · 01/08/2026

I’m positive and hopeful about what the next 7 years will bring! Please consider a donation to one of these worthy charities to help improve outcomes for lung cancer: Roy Castle Lung Cancer Foundation: roycastle.org 7/n

roycastle.org

Home | Roy Castle Lung Cancer Foundation

Roy Castle Lung Cancer Foundation offers expert lung cancer information, support for patients and families, and ways to donate or get involved. Together, we bring hope and improve lives.

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Duncan Edmonstone @edmonstone.net · 01/08/2026

Too many primary care clinicians continue to wave away symptoms that should really cause them to “think cancer”. And there are too many types of lung cancer where we don’t have targeted/personalised treatments available. 6/n

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Duncan Edmonstone @edmonstone.net · 01/08/2026

But there’s still plenty to be done. We have to get better at early diagnosis - too many patients, especially non-smoking lung cancer patients are diagnosed too late at stage 4 where we can’t currently attempt curative treatment. 5/n

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Duncan Edmonstone @edmonstone.net · 01/08/2026

The median survival time for stage 4 patients has finally got past the 1 year mark, and many patients like myself do a whole lot better. 4/n

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Duncan Edmonstone @edmonstone.net · 01/08/2026

Advances in biopsies and analysis of fragments of tumour DNA allow us to get to accurate diagnoses faster. The NHS has also done a huge amount of work operationally to shorten the diagnostic pathway despite massive pressure on resources. 3/n

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Duncan Edmonstone @edmonstone.net · 01/08/2026

In the 7 years since my diagnosis we’ve come a long way. There is a screening program for lung cancer in England and plans under way for equivalents in the devolved nations. There’s a huge number of new treatments available for lung cancer sub-types we could hardly even detect 7 years ago. 2/n

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Duncan Edmonstone @edmonstone.net · 01/08/2026

It’s World Lung Cancer Day 2026. It’s also exactly 7 years since I had surgery to remove a metastatic tumour from my brain caused by my own lung cancer. I got this rather fetching scar! 1/n

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Duncan Edmonstone @edmonstone.net · 30/07/2026

Meanwhile if you have anything to do with Kalshi or Polymarket, I guess your love of money outweighs your morals. /ends

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Duncan Edmonstone @edmonstone.net · 30/07/2026

It’s gross and any right-minded financial regulator would stop it. I won’t hold my breath for anything to happen in the US where these two companies are based though. Another example of hyper-financialisation. 3/n

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Duncan Edmonstone @edmonstone.net · 30/07/2026

To say this is sickening is an understatement - these two companies can wrap their messaging up in all sorts of ways about trying to justify this through the production of accurate datasets on trial outcomes, but we all know what this actually is - betting on whether sick people live or die. 2/n

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Duncan Edmonstone @edmonstone.net · 29/07/2026

explain nothing - just tell then you are now one of the cool kids.

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Duncan Edmonstone @edmonstone.net · 27/07/2026

The only explanation I will be providing is "I am now one of the cool kids".

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Duncan Edmonstone @edmonstone.net · 19/07/2026

Think I've told you this before Sid, "Focus on what you can control".

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Duncan Edmonstone @edmonstone.net · 19/07/2026

Don't see this in UK support groups, but have seen it in the US ones I am part of. People who think the C-19 vaccine gave them cancer... I regularly point out to these folks I had cancer *before* C-19, but it's hard to puncture the disinformation bubble.

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Duncan Edmonstone @edmonstone.net · 14/07/2026

Great advocacy Sid - patient insights at these sorts of events round out what are otherwise often coldly scientific gatherings. Remind them there are people and lived experiences behind the numbers!

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Duncan Edmonstone @edmonstone.net · 14/07/2026

No, mainly because I’m much better able to hold it together if I get bad news than my significant other. I do take in a notebook and pen, as I am aware I’m likely to forget things when stressed.

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Reposted by Duncan Edmonstone

Sid Sadler @sadlersnaps.bsky.social · 11/07/2026

Hey #Cansky ! If you didn’t know, now, we have a group message for members! We have 15 people in there now, and you can have up to 50! Looking to hopefully add more and more members so we can make this more of a community!🫶🏻 bsky.app/chat/itzxP7o

Duncan Edmonstone @edmonstone.net · 08/07/2026

As for how to push against all the quackery - I’ve always had the most success by being gentle. By all means go on your weird diet and get a coffee enema, but *tell your clinical team* and do whatever you do *alongside* your physician-recommended treatment /ends

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Duncan Edmonstone @edmonstone.net · 08/07/2026

I’m painfully aware that the “open” side of Facebook is full of the worst boomer conspiracy BS and all sorts of other unpleasantness, but there are some diamonds in the rough among the private groups. It’s entirely possible to engage with just those and ignore the rest. 4/n

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