Strive for Five - Living Life with Stage 4 Cancer

23/11/2025

Apologies I haven’t posted much on Strive for Five recently, all’s fine and lots has been going on behind the scenes.

I’ve written two papers (excited that these are my first time as lead author) and these have been submitted to scientific journals so fingers crossed they get the thumbs up 🤞

I’m involved in designing several studies, it’s so important and that researchers are working with patients.

I was in in a significant meeting recently but I’ve signed a confidentiality agreement so please watch this space for a very important announcement soon.

I’m also trying to update the website, I can safely say that Wordpress is not my friend 😬

Please let me know if there are any topics you’d like me to tackle in posts, very much open to suggestions.

The pic is with Tommy, my scruffy mutt - the centre of my world! He and I have had a couple of mini breaks recently visiting the Peak District and Yorkshire Dales, because living with cancer is about LIVING!

Big hugs

22/10/2025

Last week I was honoured to as part of a panel discussion about the importance of the patient voice in clinical research. This took place in Barcelona at the SCOPE Summit.

The ambitious title was “From Insight to Impact: Reframing Clinical Development through Patient Preference”. We were able to hit key points but there was so much we couldn’t address in the time allotted, therefore we’re planning a paper to capture the breadth, and practical applications of this topic, watch this space!

I’m looking forward to working more with these experts as we examine this important topic.

20/10/2025

Sharing a fond memory - in 2014, just over a year after being diagnosed with stage 4 bowel cancer, I passed the Budokon MMA red belt, this is an advanced mixed martial arts and yoga practice.

I’d just come back from Miami where I’d completed my yoga teacher training course.

I am still hugely proud of these achievements and hope it shows that you can still crack on with life despite having advanced cancer.

A DIAGNOSIS OF STAGE 4 CANCER DOESN’T HAVE TO BE THE END OF YOUR LIFE, IT CAN BE THE REASON TO START LIVING IT!

I still love this photo taken with Cameron Shayne, founder of Budokon, and my Budokon teacher Ryan K Calderon

20/10/2025

Last week I joined my fellow Cancer Research UK Campaigns Ambassadors to deliver our letter to Health Secretary Wes Streeting MP

This letter was signed by 35,000 people and calls on the government to deliver on its promise of a fully funded National Cancer Plan for England that prioritises earlier diagnosis, reduces waiting times and ensures everyone has access to world-class treatment can be a real .

We started at the London Stadium as last year 74,000 people in England weren’t treated in time for their cancer - that’s enough to fill this Olympic stadium

We need the cancer plan and we need it urgently!

12/10/2025

Understandably, there’s lots going on around cancer in younger people (under 50) at the moment as there is an increasing incidence in this age group. However, it’s important to remember that 90% of cancers happen in people over 50.

It’s therefore great that the journal, Nature, has an interesting edition focussing on cancer in the over 50s.

We need more research to understand why the risks of getting cancer increase with age, alongside the ongoing research in the under 50s.

I can’t read the articles in this edition as they’re behind the paywall, but the editorial makes interesting reading.

The editorial also highlights that cancer treatment can affect the aging process - another area that needs more research. In my opinion this is definitely an area that needs work as more of us are being treated by long-term, “maintenance” therapies.

I’m so glad that work is being undertaken in this area.

This Focus issue highlights current research at the intersection of ageing and cancer, and explores how insights gained from this may lead to better cancer prevention strategies and diagnostics, enhanced therapeutic efficacy and improvements to both patient quality of life and outcomes.

05/10/2025

PLEASE NOTE THIS IS A FACEBOOK MEMORY I’M SHARING AS ADVICE FOR PEOPLE GOING THROUGH TREATMENT.

Sharing this MEMORY from 2 years ago as the message is still so important - we have to listen to our bodies while we’re on treatment.

It’s important that we listen to our bodies during chemo, even with maintenance chemo.

Last week I had to postpone my treatment as I was feeling rough, not “ill” as such, but not good - the first time I’ve cancelled on the day in 10 years of treatment.

It became apparent I’d picked up a virus and got a fever.

Today I’m in the chair getting my chemo and feeling loads better.

It’s always important to be honest with yourself and your team about how you’re feeling. I’m still learning!

28/09/2025

This week I was invited to at the first World Patient Empowerment Congress in London. This was an excellent 2-day event with a great range of stakeholders including patients, patient groups, pharma and regulators. Such an uplifting and inspiring meeting.

I pulled double duty on day 1, firstly co-presenting the scene setter with my fellow patient advocate, Carole Scrafton . We helped to focus everyone on what patient empowerment really means, and the group then worked on their own definitions. We’ll be writing this up in the near future.

My keynote was on the need for improved doctor-patient communication to enable true patient empowerment and shared decision making. I illustrated the need based on what I’ve seen supporting patients in cancer care and proposed two calls to action:
➡️Simplify the language / lexicon that clinicians use with patients
➡️We need to help clinicians by giving them improved communication skills

Two of the standout presentations that resonated with so many people were from patient/carer led charities that are achieving so much for rare diseases - Duchenne UK and SLC6A1 Connect UK - these two organisations truly embody patient empowerment.

There were so many highlights from the meeting and as is so often the case, it was so good to spend time chatting to people working in patient empowerment, I always gain so much from these conversations.

I’ll share the ISPEP meeting report when it comes out

Thank you to Facilitate Live for organising this important meeting.

17/09/2025

As I’ve just had my scan it felt a good time to share my tip on COPING WITH SCANXIETY

This is the approach I take and hope it helps you too.

Big hugs

17/09/2025

CT scan with pomp and circumstance!

Managed to time my scan day with Donald Trump’s visit to Windsor. And I thought they were laying out the red carpet for me 😉

Despite all the disruption the scan went well today. I now have an allergy to the CT contrast so have to take meds before and after to stop me going into anaphylaxis, thankfully it works.

Remember that if you have any strange sensation during or after your scan it’s important to let the radiology staff know, just to be safe.

Thank you to the scan team at Princess Margaret Hospital, they always make me feel welcome and I’m flattered that they follow this page. The personal approach that take helps ease what can be a stressful experience.

Now treating myself to a toastie and a coffee and keeping fingers crossed for another clear scan 🤞

10/09/2025

I love having the opportunity to champion change for patients by utilising my experience as a patient advocate combined with my pharma expertise.I’m grateful to Adelphi Real World for inviting me to be part of such a challenging and forward-focussed session in Manchester last week.

I really enjoyed presenting about the need for a more sophisticated approach in the way funding of medicines is assessed (HTAs), we need them to tailor assessments to the real needs of patients rather than forcing everyone into a generic and artificial “one-size-fits-all” approach - so important in this evolving world of rare disease and personalised medicine.

It was an honour to share the stage with panellists presenting on the caregiver perspective, the industry perspective and the importance of Real World Evidence in this area.

Watch this space for an article calling for change in this area!

06/08/2025

I'm excited to be presenting at next month's Patient Empowerment conference in London, it looks like a great two day programme.

I'll be presenting on "Effective Clinical Communication is Crucial for Patient Empowerment" as a plenary session on day two. This is a topic I'm passionate about as I truly believe that if we can improve doctors and nurses communication skills (language, terminology and tone) it will help us as patients and will ultimately be better for them too!

For more information on the conference: https://patient-empowerment.com/

31/07/2025

One of the privileges of being a Patient Advocate is that I get to . Recently I was asked to give the patient perspective on the future of DISEASE PREVENTION.

Prevention of disease (or "reducing risk") is such an important topic for the future of health and provision of health care.

I was privileged to be part of a panel organised by Adelphi Group at the Anthropy UK "Rebooting Britain" event earlier this year. This was title "THE PREVENTION REVOLUTION IN YOUR HEALTHCARE" and I enjoyed sharing the platform with a truly expert panel.

An excellent report has been published from this session which you can view HERE:
https://pharmaphorum.com/patients/prevention-healthcare-revolution-future-pharma

Please let me know your thoughts on this.