Fuck cancer.
Take back some control.
I'm Russ. I've had stage 4 bowel cancer since 2021. FC:AI is where I share everything: my data, the AI tools I use, and what's actually helped. It's for patients and carers who want a bit more control, and for anyone who might know something I don't.
Right now: Cycle 5 of FOLFIRI + cetuximab rechallenge · profile updated 2 November 2026
I'm Russ
I was diagnosed with stage 4 bowel cancer in 2021, at 38, with two young kids. It's incurable but treatable, and I'm still in treatment now. I live in Bath and I spent almost twenty years in PR and communications before any of this.
I use AI every day to manage it: tracking every chemo cycle, keeping every scan, letter and blood test in one place, and working out better questions to ask the people treating me. None of that makes me an expert. It makes me a patient who stopped waiting to be handed information.
FC:AI is where I put all of it, in public: my records, the tools, what worked and what didn't. No pink ribbons, no inspirational quotes, no claims I can't back up with a document. It's turned into conversations with researchers, oncologists and patients in half a dozen countries, which is the entire point.
I've talked about it on the main stage at HIMSS Europe, in Health Awareness with the Guardian, in Business Insider and on a few podcasts.
My day job I run Known & Cited, an AI brand intelligence company here in Bath. That one pays for this one. Different project, same person.
What's changed in the last two weeks
Cycle 5 and the restaging CT · 12 Oct – 2 Nov. I rebuild this every two weeks, in time with my chemo cycle — bloods, tracking, the cycle map and anything new that's come out of sharing all this. If you've been here before, this is the bit that's new.
- CEA is 46.5 µg/L on 28 October, against 47.3 on 12 October. Down 68% from the 1 September peak of 146, and steady since late September — flat rather than falling or rising.
- ALP has come down for the first time in months: 190 on 12 October to 149 now. Haemoglobin is back inside range at 134, bilirubin is 9, and platelets, white cells and neutrophils are all normal. Red cells remain marginally low at 4.31.
- The restaging CT on 28 October shows a partial response. The lung metastases and chest nodes have partially reduced, a right upper lobe nodule has cavitated, and the segment VII liver lesion is stable. The radiologist's comment: “Partial response of the intrathoracic lymph nodes and lung metastases. Stable appearances of the liver.”
- Cycle 5 was given on 14 October. Next steps are being discussed with my oncologist this week. Nothing is decided yet: on the table are treating the liver lesion, continuing or dropping the irinotecan, and what the next line looks like.
- My pharmacogenetics are now published: I am UGT1A1 *28/*28, a poor metaboliser, which means slower irinotecan clearance and a higher risk of neutropenia and diarrhoea. It is also the reason for my Gilbert's.
- A lab cell-kill test on circulating tumour cells is published too, with the caveat it deserves: a dish is not a person, and it is no proof of benefit in me.
- A hackathon on my case, Wednesday 25 November, 5–6pm UK, online. Oncologists, radiologists, genomics people and vaccine researchers — come and pull my data apart. Details and RSVP.
Behind it sits the full record: every blood test since April 2025, every scan, the genomics and a daily chemo log. It's all public, because the more people who can see it, the more chance someone spots something.
Three things worth reading
Why I'm open sourcing myself
You already have a huge amount of information about yourself. Pulled together, it's useful to every doctor, nurse and second opinion you ever see. And the more people who see mine, the better my odds.
Read why → So farWhat it's done for me
A genetic specialist in Australia. A cancer vaccine team. A specialist in Argentina. A genomics researcher who spotted what my testing was missing. None of that happens if the data stays in a drawer.
See what's happened → ToolsThe tools I actually use
Gemini Gems that track chemo from my voice, a NotebookLM vault of every record I have, advisor Gems built from years of notes, and Radical Health.
See the tools →Who I'd love to hear from
People who know this cancer
Patients with a similar profile, oncologists, scientists, geneticists. Is there anything else I should be doing?
Companies building AI for patients
Talk to patients before you go full speed. Advisory, patient-voice input on products, and speaking.
Cancer charities
Working out how to use AI and modernise? I've been using it through treatment every day, and I'd love to be involved.
Patients and carers
Would it help to sit down, on a call or in person, and set some of this up together? Register your interest in a workshop.
Where this has turned up
Health Awareness
"I have stage 4 cancer — AI is how I took back control", in Mediaplanet's supplement with the Guardian.
InterviewBusiness Insider
The three ways I use AI to make treatment a bit easier.
PodcastsFaces of Digital Health · Timewise
The agentic patient, and working through treatment.
StageHIMSS Europe
The patient on the panel, Copenhagen 2026.
Day to day, I'm on LinkedIn
Most of what I write goes on LinkedIn first. If you want to keep up with what I'm doing week to week, follow me there. The blog here is for the posts that need a permanent home.
Why I've changed FC:AI, and what it is now
Less "here's how to build a tool". More "here's everything, go and do something useful with it".
⚕️ FC:AI does not offer medical advice. It's my data and my experience, shared openly. Your medical team handles the medicine.