Addendum… or honestly any supranational health organisation!

But I have my doubts over how complete coverage will be, and really a single country model is not a sensible answer. For rarer diseases, patients will almost inevitably have to seek novel treatments internationally. Really feels like something WHO should be looking at? /ends

The point being it is frustrating to have to put together all these different sources of information. And I consider myself a well-informed and able patient able to advocate for myself. I am hearing that ultimately some of this may get fixed by some of the digital changes planned by the NHS… 4/n

I then also need to search clinicaltrialsregister.eu - as a UK patient, I also need to search the ISRCTN register, and the NIHR Open data portal. There are probably others I have missed… 3/n

Of course clinicaltrials.gov is where I start, and it does have an excellent search API that allows me to find recruiting trials near me, but that is just the start… 2/n

A huge frustration for me as a non-US cancer patient. Clinicaltrials.gov *only* covers trials that have at least one US location. To see trials local to me (in the UK), I have to search and de-dupe through a numbers of sites… 1/n

Yup - had brain surgery 6 years ago… came around with the most intense headache I could imagine it is possible to have. After a few shots of morphine I flew on a magic swan to Venus.

Oops my bad, it was of course Dr David Gilligan. Not sure where I got Andrew from!

My sound quality was a bit suspect, but hopefully I was (mostly) intelligible.

Lung Cancer Podcast | Roy Castle Talk of Hope is a lung cancer podcast sharing real stories and expert advice. Listen to episodes on diagnosis, treatment, and living with lung cancer.

I recently took part in a podcast with the Roy Castle Lung Cancer Foundation, discussing precision medicine from a patient’s perspective with Dr Andrew Gilligan and Rachel Avery:

roycastle.org/our-support/...

NLCA Newsletter, April 2026 - National Cancer Audit Collaborating Centre We use some essential cookies to make this website work.

📣 The April NLCA Newsletter is here!
This month features the recently published State of the Nation report 2026, the upcoming April Data Dashboard, and engagement activities including our latest blog, conference participation and upcoming podcast. 

👉 Read here: buff.ly/4uAhrxe
@btog.bsky.social

All good questions worth asking. The other one is about quality of life. Some treatments have the possibility of extending life by a few months, but at the coast of terrible QoL.

Simple rule of thumb for me as someone treated under universal healthcare when deciding on an unsupported treatment:

Have a clinical team you trust who are up to speed with WW research and trials. Then ask the Q “would you offer me this treatment if it were available here?”

You can’t see it now, but the guy has deactivated his account, claiming he received death threats in his DMs. I really hope that is just an excuse, but this is social media so who knows.

Also those US troops in gulf states are nothing to do with NATO.

If the US loses access to its European bases, the cost of doing “force projection” will be way more than any savings you make from bringing those troops home. Of course if you don’t want to do force projection any more that’s fine, although the current situation in the Middle East suggests otherwise

I have stage four cancer – there will be no cure, but death isn’t necessarily imminent: this is how it feels to live in the long middle When you are cured, the world cheers; when you are dying, it mourns. But when you are simply maintaining, the world is at a loss

If you haven't read it already, this recent article sums up the liminal life of living with cancer - a very well-written article:

www.theguardian.com/society/2026...

I don't identify with every sentence, but the overall message certainly resonates.

I have stage four cancer – there will be no cure, but death isn’t necessarily imminent: this is how it feels to live in the long middle When you are cured, the world cheers; when you are dying, it mourns. But when you are simply maintaining, the world is at a loss

Well worth a read to help people understand what it is to live with stage 4 cancer. The "liminal" state of neither dying nor truly being able to just get on with life. If you want to know how I live my life, read this.

www.theguardian.com/society/2026...

Freddy Flintoff in a pedalo?

Reminds me of spending time with a good friend at university, trying to work out which drink provided the best "bang per buck" in terms of alcohol percentage vs. price.

Cue 6 months of drinking almost nothing apart from QC Red Ruby port.

And this was at a poly, not some Oxbridge/red brick place

World's wrongest man continues his winning streak... narrowly staying ahead of Daniel Hannan

It would make a lot of tech industry old-timers smile. Outside of their own employees and those who built careers on their original tech stack, they are pretty much universally loathed.

No extra comment required

a cartoon character with a skull on his face ALT: a cartoon character with a skull on his face

February 15 is St. Skeletor's Day - look it up!

I wonder what it is about a cohort of people whose opinions are easily manipulated by what they see on TV that attracted all those advertisers to Fox News?

Not sure what the other 126 rules are yet... probably something about flags in bios

Simple rule of social media No127

Anyone referring to themselves as a "Digital Creator" has nothing of value to say and can be safely ignored.

Can't believe I was too busy doing cancer patient advocacy stuff yesterday to notice it was world cancer day 🤷‍♂️

I wouldn't normally read The Daily Express, and some of the language they use is a bit OTT, but it's still good PR for ALK+ NSCLC.

Apparently, it is in the print edition as well, so I may have to buy a copy!