ne thing about being a patient engagement consultant and patient advocate who is living life with a serious disease, is that I have to jump through certain hoops every now and again, and regular CT scans are part of this. However I've never had a CT with pomp and circumstance! 1/3

I love being able to champion change for patients by using my patient advocate experience & my pharma expertise. I’m grateful to @AdelphiGroup for inviting me to be part of such a challenging and forward-focussed session in Manchester last week. 1/3 #RepresentingPatients

I'm excited to be presenting "Effective Clinical Communication is Crucial for Patient Empowerment" at next month's conference, it looks like a great two day programme For more information on the conference: patient-empowerment.com #PatientEmpowerment25 #RepresentingPatients

One of the privileges of being a Patient Advocate is that I get to #RepresentPatients. Recently I was asked to give the patient perspective on the future of DISEASE PREVENTION An excellent report has been published HERE: pharmaphorum.com/patients/pre... 1/2

Proud to have been involved in the GOOD PATIENT PARTNERSHIP GUIDE, a great initiative to encourage pharma to work with patients to help improve health literacy - critically important to help set patients up for treatment success precisionaq.com/en-gb/good-pat… #RepresentingPatientsts

Sometimes I have to remind myself that “living life with stage 4 cancer” is about LIVING LIFE! Last week I took Tommy on a little tour visiting family & friends then had a few days in the Peak District Great adventure #Stage4 #stage4cancer #LivingLifeWithCancer

What a great experience - spent Thursday and Friday in Harrogate with @cancerresearchuk.org for their ALL FELLOWS meeting - an opportunity to meet and network with talented cancer researchers from across the UK. 1/4 #CRUKAllFellows

Here’s a new app giving access to the only bespoke, managed mobile database of bowel disease related research - could be a useful tool for any colorectal cancer patients looking for active studies. Great initiative from Bowel Research UK and Acpgbi bowelresearchuk.org/trialsapp/

Misinformation is rife around cancer and it’s putting people’s lives at risk This report on BBC Panorama shines a light on these dangers and is worth a watch Even Strive for Five is targeted by people peddling fake cures www.bbc.co.uk/iplayer/epis...

Being in a clinical trial can gain access to the latest treatments and help us all learn more about medicines in development. The big challenge is often finding out about them - that’s where this site is excellent, best I’ve found: clinicaltrials.gov

This afternoon I had great fun recording a podcast as part of Chris Nichols’ series called “About Time”, we talked about Strive for Five and Beyond & so much more! You can find the series here, it's a great listen: open.spotify.com/show/4hPwWq5...

12 years ago today I was diagnosed with stage 4 bowel (colorectal) cancer When I was told “it’s spread to your liver and both lungs” I thought my life was over, but thanks to great medical & surgical care, and the support of my incredible friends and family, I’M STILL HERE! 1/6

Two sides of Wednesday -what a difference! Started with my CT. I’m allergic to the contrast so I have to be on cetirizine and steroids, which ramps up the anxiety. Had to revisit the importance of the tip on coping with SCANXIETY (attached for anyone going through this) 1/3

Let’s talk about food - can it cause cancer, and can it prevent cancer? In their latest video, @cancerresearchuk.org talk to Professor Marc Gunter to tackle this issue - it’s worth a watch! youtu.be/RxxjbuC7Ct4

Thank you to all the amazing nurses who’ve done so much to help me on my cancer journey over the past 11 years - I literally wouldn’t be here without you. Thank you to all the nurses, what you do makes a real difference, we all appreciate you. #InternationalNursesDay

“The Prevention Revolution in your Healthcare” was the bold title of our expert panel yesterday afternoon at the #Anthropy25 meeting at Eden Project in Cornwall. The whole discussion will be captured and condensed into a paper which will be published soon, watch this space!

I’m already feeling inspired and #Anthropy25 has only just started! I’m at the Eden Project for the next few days & presenting in the session “The Prevention Revolution in Your Healthcare” where I’ll be representing the patient perspective #RepresentingPatients

Excited to share our new white paper on engaging patients fully in the development of their medicines! We hope is an interesting and stimulating paper. I'm looking forward to hearing your responses and opinions Check out the full manifesto here: bit.ly/4kXKpPm

March is International #ColorectalCancerAwareness Month, so I’m sharing this vid from a few years ago emphasising that there is hope with stage 4 cancer. It’s vital to go to your doctor if things don’t feel “quite right”. I wouldn’t be here if I’d ignored my symptoms. youtu.be/MLI-EmtH8NA?...

I was so grateful to receive this heartwarming message about the recent Podcast I recorded. So glad it’s of help.  You can hear the full episode here: player.captivate.fm/episode/74678f… This is what we talked about (we covered a lot in 20 minutes): 1/3

I’ve learned so much at the Patient Centricity & Collaboration World Congress in London. So many inspirational people from patient advocacy, pharma companies and communication / education / research companies all in one place with one goal - to improve healthcare! 1/4

So happy that the scan confirmed that "watch-and-wait" was the right approach - the area of concern was scar tissue I’ve updated the blog - while waiting can feel counter-intuitive to us as patients, it is actually a positive medical approach www.striveforfive.org/why-do-we-ha...

Wow, only two weeks to the Patient Centricity World Congress in London. Very excited to be part of the opening panel. We’ll be discussing “Effective patient engagement essential for defining outcomes that are truly reflective of what matters most to patients” 1/2

Yesterday was #WorldCancerDay, it's a chance to share what I learned from a group of cancer patients. This can be summarised in 4 areas & 2 themes 4 areas Research-Access-Care-Support 2 themes: patients need the SCIENCE, & equally important are the so called SOFT SKILLS 1/2

Great news that at last the bowel cancer screening tests in England will be sent out to people as young as 50 years of age. This brings us into line with policy in Scotland and Wales. news.cancerresearchuk.org/2025/01/14/b...

One project from 2024 that I’m particularly proud to have been involved in is this report on GENDER BIAS IN ONCOLOGY. Please take a look at this paper and let us know your thoughts. 1/5 www.ipsos.com/en-uk/gender... #ispep #RepresentingPatients #GenderBias

Wishing a very happy Christmas to everyone who follows Strive for Five. Instead of Christmas cards I’ve made a donation to Cancer Research UK to help support their essential work. @cancerresearchuk.org

Being told we have to wait for the next scan before treatment can start feels crazy - I've experienced this a few times In my blog I discuss why doctors opt for "watch & wait" instead of zapping straight away Hope it helps Big hugs www.striveforfive.org/why-do-we-ha...

One of the big challenges after a cancer diagnosis is getting travel insurance. Yesterday Radio 4 featured the story of how this company was formed and includes good explanations of the problems we can face with some insurance companies. Worth a listen 👍 www.bbc.co.uk/sounds/play/...

I’ve recorded a podcast for the International Society for Patient Engagement Professionals It’s always a pleasure to #RepresentPatients, we covered a lot of important points about #PatientEngagement from my experience as a patient, patient advocate, & pharma exec player.captivate.fm/episode/7467...

Great to meet with my MP @mattrodda.bsky.social with @cancerresearchuk.org We discussed factors affecting cancer including risk factors and treatments, & the second reading of the Tobacco and Vapes Bill It’s good to know my MP is committed to helping people affected by cancer. #SmokeFreeUK

Interesting and balanced view on a key topic

If you or someone you know has stage 4 cancer please take a look at my story and the free resources on www.StriveForFive.org Loads of tips, videos and podcasts. Hope it’s helpful. #stage4 #cancer #RepresentingPatients #Hope