Strive for Five - Living Life with Stage 4 Cancer

04/04/2026

Misinformation;
Information overload;
Over-complicated medical language;
- all lead to confusion, especially for people diagnosed with serious medical conditions.

It’s a minefield!

Addressing this is critical in ensuring success in coming to terms with our diagnosis and getting the most out of our treatments.

This is why we tackled this topic on our panel at Anthropy UK last week at the Eden Project. We discussed ideas for how to improve the situation, with trust and human connection being central to the solution. Watch this space for the conclusions and recommendations coming soon.

What made it such a powerful conversation was the breadth of experience on the panel - psychology insight, media and social media, wellbeing, Gen Z, industry, plant based therapy and the patient perspective - combined with great questions from the audience.

My fellow panellists included by pal, the inspirational Alexandra Legouix

I’m grateful to Anthropy for including this topic and especially to Adelphi Real World for pulling this all together, facilitating the discussion and the follow up activities.

Extra special thanks to Alex for the video editing skills

31/03/2026

Revisiting this video about how to cope with a diagnosis of stage 4 cancer - pretty much as true today as when we recorded it 8 years ago!

I mentioned the forum, please note the charity is now called Bowel Cancer UK.

A great Facebook group is Bowel Cancer Support UK. I’ve been told MacMillan have a great group too but I haven’t had any experience of it.

The beard was a fundraiser for the charity, I kinda miss it!

Thank you Alexandra Legouix for making the videos happen 🙏

Steve Clark talks to Alexandra Leguoix about coping with a diagnosis of advanced bowel cancer from his experience.

30/03/2026

In this second video, I asked Ameca (a social humanoid robot) what advice it would give to someone diagnosed with stage 4 cancer.

This was again pragmatic advice, but subtly different to the question about cancer.

It’s good to see this sort of development in how AI could potentially interact with patients in the future!

This took place at Anthropy UK and Ameca is a product of Engineered Arts

Thank you to Alexandra Legouix for the video

30/03/2026

Last week I had the opportunity to chat with Ameca, a “social humanoid robot”. In this first video I asked what advice it would give to someone diagnosed with cancer.

Given all the discussions about AI misinformation it was refreshing to hear this pragmatic advice. (In the next video I ask about stage 4 cancer)

There are interesting plans around the potential roles of Ameca to interact with and inform people in hospitals and care homes

This took place in the Futuredome at the Anthropy UK event, Ameca is from Engineered Arts

Video courtesy of Alexandra Legouix

25/03/2026

Great first day at Anthropy UK -Inspiring a Better Britain at The Eden Project

Really enjoyed learning and sharing ideas with incredible people, not least of all my incredible friend and co-panellist, Alexandra Legouix.

My key takeaways from today are:

- we need to rediscover the benefits of communing, sharing ideas and energy together.

- Engaging with people leads to better understanding

- We hear a lot about Doomscrolling but it’s not all negative, joy-scrolling is possible by making the algorithms show you what you want to see.

Very excited to be speaking tomorrow as part of the panel on what to do about misinformation in healthcare .

You can see how much Tommy’s missing me, he’s romping around with the dog sitter!

20/03/2026

Could I ask for your help please?

Next week I’m presenting as part of a meeting called Anthropy. The topic is HEALTH INFORMATION AND MISINFORMATION and I’d really appreciate your thoughts and experiences.

When you were diagnosed with cancer where did you turn to to find information (eg Google, charities, NHS website, books, friends, booklets from hospital etc)?

Did you find it easy or difficult to find your way around and understand all the information?

Did you come across misinformation dressed up as facts?

What do you think can be done to improve things?

Anything else you feel is relevant and important?

Any details will be appreciated. If you’d rather comment confidentially please feel free to DM me.

17/03/2026

There’s never been more information about health available and there’s probably never been so much confusion about health.

That’s because having access to loads of information (and misinformation) isn’t the same as having accessible and meaningful information when we’re being diagnosed with a serious illness.

This will be core to the discussion in our session at the Anthropy UK national gathering next week at the Eden Project.

𝗛𝗲𝗮𝗹𝘁𝗵 𝗧𝗿𝘂𝘁𝗵𝘀 𝗮𝘁 𝘁𝗵𝗲 𝗖𝗿𝗼𝘀𝘀𝗿𝗼𝗮𝗱𝘀: 𝗪𝗵𝘆 𝗧𝗵𝗶𝘀 𝗖𝗼𝗻𝘃𝗲𝗿𝘀𝗮𝘁𝗶𝗼𝗻 𝗠𝗮𝘁𝘁𝗲𝗿𝘀 𝗡𝗼𝘄
is the Adelphi Group session next Thursday where I’ll join an incredible panel to try to address this:

Steve Clark - patient advocate with first hand experience of navigating misinformation
Alexandra Legouix - broadcaster, psychotherapist and wellness communicator
Chris Loxley - behavioural scientist
Sebastian Vaughan - innovator in emerging therapies
Annabel Lambert -digital emerging leader

Anthropy brings together responsible leaders and organisations to inspire a more united future for the United Kingdom. Working with a cross-sector network, Anthropy facilitates changing practices, building new partnerships, influencing policy makers and transforming behaviour.

12/03/2026

Proud and excited to take on the role of chairing the Advisory Board of the International Society for Patient Engagement Professionals.

This is a great opportunity to with this incredible community of professionals who are dedicated to helping patients.

08/03/2026

Sharing this message from 7 years ago about the importance of mindset towards our treatment.
Big hugs

I’ve been having chemo for over 5 years now and I think the worst cycle was the first. I completely psyched myself out of it due to my perceptions of chemo, and made myself ill.

When I changed my mindset it got much better - chemo is there to help me, it’s my friend and ally.

I look forward to chemo as I feel I’m doing something positive to control the cancer.

05/03/2026

Last week I was lucky enough to attend, and present at, and at the 8th Patient Centricity and Collaboration World Congress in London. This was a gathering of many thought leaders from the world of patient engagement where ideas and energy was exchanged!

My presentation title was “Improving Healthcare Communication Needs a Collaborative Solution”, some of the key points were:

We are living in a time where as patients we face both misinformation being fired at us alongside information overload.

Many disease areas are becoming more complicated thanks to amazing research advances, but this can contribute to patient confusion and drives us to the internet to try to understand what we’re being told in our appointments.

HCPs, patient charities, pharma and hospitals can all be unwittingly contributing to the confusion by developing loads of materials on the same topic but often using different terminology etc.

This can contribute to patients experiencing the nocebo effect by misunderstanding their disease and the treatments being offered, it’s not setting them up for success.

SO HERE ARE THE TWO IDEAS:

Can we get all the stakeholders to stop reinventing the wheel and instead work together to develop core information hub for each disease, developed in collaboration with patients? This would ensure consistency of information, terminology and focus to ensure the info patients are given is consistent.

Can we build communication skills into all HCP training / CME to ensure HCPs are able to introduce complicated concepts in a more patient friendly manner?

Can we fix it?

27/02/2026

Over the past week I’ve been speaking with a few people about the importance of mindset when we’ve been diagnosed with cancer.

One of the things that can make cancer daunting is that it’s called “the big C” - it makes it seem even more menacing and gives it power.

Let’s cancel “the big c” and just call it cancer, then focus on getting it out of our systems!

24/02/2026

Sharing great news - the latest scan is still clear! This will take me to 13 years with stage 4 and clear scans for the past 8 years!

I know I’m lucky but it’s so important to share that more and more of us are living longer and fulfilling lives!

My oncologist and I have now agreed to move to annual scans, it feels like a big leap but makes sense. Big gulp!

Big hugs from me and Tommy!