Loaf rating ~8/10

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

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/...

📣 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

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...

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 chatted with a PR lady from The Christie Hospital a while ago. They wrote up a piece, and a national newspaper has picked it up. It's good to get our stories out there! www.express.co.uk/life-style/h...

Spent Friday attending @gmcanceracademy.bsky.social Genomics Education Event. Spoke on a patient panel, and presented a patient’s view of liquid biopsies. Very informative!

Part 3, the last part of my interview with @yvonnediaz.bsky.social of @oncogenecancer.bsky.social We discuss brain mets, brain surgery, and their implications for driving in the UK. We also talked about returning to work and then adjusting my life so I can stop working. youtu.be/yIWw0U2yg5c?...

I don’t know if it’s just me, but I find I am able to “Live, Laugh, Love” without requiring a reminder to do so painted on one of the walls in my home.

The 2nd part of my interview with @yvonnediaz.bsky.social of @oncogenecancer.bsky.social In this part, I discuss my advocacy work, especially my work with Greater Manchester Cancer Alliance. We also talk about who inspired me to become a patient advocate, Cameron Millar youtu.be/8wRLznxVN0U 1/2

Last night I attended the launch of the Greater Manchester Cancer Alliance Metastatic Strategy. Metastatic patients often “fall through the cracks” between healthcare teams or experience poor communication from those teams. 1/n

I suppose we should be concerned about a concentration of newspapers all in the hands of one very rich person, but TBH the DT has been pretty much indistinguishable from the DM for a good few years now www.theguardian.com/media/2025/n...

Positive news emerging about Nuvalent's 4G TKI for ALK+ NSCLC patients. Latest trial result show 31% of all patients had a complete or partial response (many of these were heavily pre-treated with other TKIs and chemo). For patients who never received Lorlatinib this increased to 46% 1/n

A fantastic paper to help patients like me understand the science behind ALK+ Lung Cancer and its treatments. onlinelibrary.wiley.com/doi/10.1111/... Elena isn't just a Professor of Molecular Oncology, she is also an ALK+ patient. Whenever I speak with her, I learn something new about my disease.

Fascinating meta-study on the risk factors for lung cancer in never-smokers. I'll want to discuss this with the GM Cancer Alliance early detection & diagnosis group I am part of: www.jtocrr.org/article/S266...

A great little resource for explaining pleural effusions to cancer patients and carers mypleuraleffusionjourney.com

I was honoured to spend a few hours recently talking with @yvonnediaz.bsky.social from @oncogenecancer.bsky.social about my lung cancer experiences. This first part is about my initial diagnosis and the start of my treatment. More to come shortly! youtu.be/FZsbfkloPyM?...

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

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!

The new ALKnowledge site is live – an expert-led, interactive resource on ALK+ lung cancer for patients and professionals. Visit now 🌐 alknowledge.org

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...

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...

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

Little project I did to estimate the # of ALK-positive non-small-cell lung cancer patients on targeted therapy at all NHS Trusts in England: lookerstudio.google.com/s/gRVht58B0jg

I’m increasingly convinced that the future of a cancer screening is ultra-sensitive ctDNA tests. If the cost of the assay technology can come down to a reasonable level where tests cost say < $100, it becomes possible and meaningful to screen whole populations: aacrjournals.org/cancerdiscov...

Overlooked for the papacy *again*. So unlucky… it feels like those cardinals really have that gig sewn up.

Yesterday I attended a Quality Improvement event at @natcan-news.bsky.social Much was learned about some exciting initiatives that will improve the quality of the various cancer audits under NATCAN's purview, and some that will lead to real differences in patient outcomes.

Well everyone else is doing it, so... how I arrived on BlueSky

Heading into London to represent lung cancer patients at the National Cancer Audit's Quality Improvement event. Had to run for my train and now my muscles and lungs are telling me I really shouldn't have done. The life of a lung cancer patient! #LCSM #CANSKY

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...

<sigh> Brexit - the gift that keeps on giving www.theguardian.com/science/2025...

Connections between the PM2.5 particulates from wood-burning stoves and non-smoking lung cancer? Who knows for sure, but it's always useful to see a bit more data: www.theguardian.com/environment/... storymaps.arcgis.com/stories/9231...

I think (hope) this a data issue (how it is collected or used to calculate these stats.) If not, this says oncs are either not reading the biomarker section of biopsy reports, or reading it but deciding "no, I won't follow the NICE guidance for ALK+ patients". And that would be incredibly bad.

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)

Tonight on ITV, ‘Cancer Under 50’ examines the worrying increase in cancer diagnoses among people under 50. The programme features Sylvie from London, who was diagnosed with stage 4 ALK+ #lungcancer at 46. Sylvie, who has never smoked, experienced symptoms that were initially overlooked. #LCSM

This is sickening. Reads like something straight out of a history book (you know the period I'm referring to). I know a few US people, and they are all genuinely lovely people, but right now, nothing could persuade me to travel to their country. www.theguardian.com/us-news/2025...

As is traditional for the first day of the year I have spent mostly outside and it is sunny, I have burnt my face. Alectinib-induced photosensitivity is a complete PITA. #ForgotMySPF50

Very pleased to see this information resource for ALK-positive lung cancer launched: alknowledge.org I was very proud to contribute some videos of my experience to this. It is focused on patients and carers, but a version for healthcare professionals is in the works.

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.

Cancer patient or carer in England looking to get involved in local advocacy? Pretty much all NHS England Cancer Alliances operate a PPIE program. It's a great way to make a meaningful difference in cancer treatment in your area. Find your Cancer Alliance here: www.england.nhs.uk/cancer/cance...

Good to see some of the work I did for GM Cancer Alliance recognised in a local newspaper www.manchestereveningnews.co.uk/special-feat...

Well I did it. Deleted the Xitter app from my devices. Have left my account there but won’t be browsing/reading/posting there any more. Say no to nazis.

I keep hearing “you might not like Trump and the GOP, but look they are getting things done, the liberal consensus has done nothing for the last 10 years”. There’s some truth in this, but that truth is smashing things up is easy and quick, while building things up is hard and slow.

BREAKING: If you put the word "BREAKING" at the start of a social media post, you can claim any old shit, and 60% of the people that read it will believe you without question.

I spent the morning at The Christie Hospital in Manchester - an appointment with my oncologist to review scans and blood, followed by the pharmacy to pick up cycle 74 of my meds. Scans all stable, so on we go for another 3 months. Living with lung cancer continues. #cansky