Strive for Five - Living Life with Stage 4 Cancer

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!

12/02/2026

The varied life of a cancer patient advocate!

Last Monday speaking at 10 Downing Street, this Monday getting scanned (routine scan), and next Monday getting the results!

10/02/2026

Last Monday was one of those "pinch me moments".

I never thought I'd be invited to attend a reception at 10 Downing Street, and I was highly honoured to be asked to give a speech on behalf of cancer patients to introduce The Secretary of State for Health and Social Care, The Right Honourable Wes Streeting.

The event was linked to and was the launch of the UK Government's 10-year Cancer Plan.

I was speaking on behalf of Cancer Research UK and Strive for Five at this event which was attended by the heads of most of the UK cancer charities who had been involved in the development of the cancer plan.

In my speech I highlighted that I've seen a great deal of progress in cancer thanks to incredible research which has led to more and more people like me living longer and fulfilling lives, even with stage 4 disease.

I stated that I see the need for further commitment to research to ensure we can build on these success in the future.

I reflected on the disparities in cancer care between different communities throughout the UK.

And highlighted that the UK is falling further behind the rest of the world in actual results FOR cancer patients.

With that, I used this platform, on World Cancer Day to celebrate the successes that have been achieved in cancer and to call for improved care for cancer patients - the whole cancer community desperately needs the government's cancer plan to drive change and deliver improvements in care for all of us.

I'm pleased to say that Wes was nodding throughout the speech and highlighted several points within his speech. We now need to hold the government to account to deliver the plan FOR cancer patients.

During the evening I was able to have a long conversation with the Minister of Health Karin Smyth for Bristol South , and I'll always be grateful to Michelle Mitchell for chatting to me before the speech to ease my nerves and help me to take in the magnitude of the occasion. All the staff at Downing Street were lovely and supportive on the evening.

I hope that I represented CRUK and my fellow patients well

04/02/2026

On I was thinking about a strong message to write, but the biggest news for cancer in the UK landed today - the government's 10-year Cancer Plan.

The cancer community desperately needs the service to improve and I hope that this plan can truly be a turning point for cancer.
Cancer Research UK has done an excellent job of summarising the key points, it's worth a read.

Now we have to hold the government accountable to deliver the plan FOR cancer patients.

https://news.cancerresearchuk.org/2026/02/04/breaking-down-the-national-cancer-plan-for-england/

Department of Health and Social Care - DHSC

The UK Government has launched a National Cancer Plan for England. Will it be the turning point for cancer that we need?

02/02/2026

Not my usual Monday night!
Watch this space for more information over the coming days!

30/01/2026

Busy week and I forgot to take any photos until I was passing The Tower while heading home today.

I started the week in Manchester as part of the faculty for the Junior Investigator Network Group traing for new researchers.

The middle of the week was all about the “integrating patients in research” publication

Today I was in London for an energetic and far reaching round table on trust in healthcare.

Now I’m cuddling up with my scruffy mutt Tommy!