Patient partners

Andy

I'm Andy. I enjoyed a career in merchant banking before being in a lucky position to take early retirement aged 55, some seven years ago. 

I thought my luck had maybe run out when I was diagnosed with colorectal cancer last year, but I had surgery, brachytherapy and chemoradiotherapy, which rather symbolically for me ended on New Years Eve. 

I'm currently clear of cancer and undergoing three-monthly surveillance for the next few years, so I still count myself very lucky indeed. 

The treatment I received from the various NHS teams in East Kent and Guildford was nothing short of fantastic, and the backup support from Jenni, my CNS, was and still is amazing! As was the support from friends and family of course. 

However, the journey was still at times uncertain and rather lonely, which is why I again feel very lucky to be in a position to give something of myself back to the NHS. 

So far this has been in the form of participation in the filming of the bowel cancer video, as a voice on the end of the phone for new patients going through similar treatment experience to me, and now most recently as a patient partner. 

It's a great feeling to know that the patient voice carries weight within the NHS and that together we can improve the patient experience moving forward.

Brian

My name is Brian, husband, father, grandfather, retired social worker and fixer of broken toys.

I am also a lucky survivor of prostate cancer. I say lucky because it was only by chance my cancer was diagnosed 
early and at a stage where it was very treatable.  

In April 2008 I had visited my doctor complaining of a pain in the bum which, happily, turned out to be nothing that couldn't be remedied by spending less time sitting on it.

However, as a precaution, the good doctor ordered a blood test and, as the result showed a slightly elevated PSA level, he packed me off to the hospital for further tests.  

To cut a long story short, I was eventually diagnosed with prostate cancer, a disease I had only ever heard about but never thought I would experience.

After all, these things only happen to other people, don't they? However, when my world stopped spinning, my first instinct was to learn as much as possible about this unwelcome visitor.

I can remember frantically buying half a dozen books off Amazon, five of which may as well have been written in ancient Greek for all the sense they made, but Dr Patrick Walsh's Guide to Surviving Prostate Cancer was brilliant.

Dr Walsh is credited with developing the nerve-sparing approach to prostate surgery in use today. His book was written in clear, easily understood English and was both informative and encouraging.

I later learned that Prostate Cancer UK and Prostate Cancer Research UK are excellent sources of information, the latter particularly so since the addition of its Infopool section where patients share their own stories and experiences.

My wife was a rock from throughout. We had lots of sleepless nights knowing that any kind of radical treatment could have life-changing side effects, but surviving the disease was our priority.

Because my cancer was, thankfully, contained within the prostate, we were presented with various treatment options: external beam radiotherapy, brachytherapy (where radioactive seeds are implanted into the prostate), or radical prostatectomy.

Survival rates for all three approaches were, we were told, very similar, but the choice would be ours.  However, we weren't doctors — so how in heaven's name were we to choose?

Searching for answers, I joined the Prostate Cancer Support Association (PCSA Kent). There I met other men living with prostate cancer — and, just as importantly, their wives and partners. Hearing about their experiences, the choices they had made, and life after treatment was incredibly helpful.

Every story was different. Many had undergone surgery or radiotherapy and were doing very well. Some were still in treatment, while a few, sadly, were facing advanced disease.

Yet what struck me most was their resilience. These people weren't simply surviving cancer; they were living life fully — laughing, joking, supporting one another, and remaining wonderfully positive.

My wife and I eventually decided on surgery, as, rightly or wrongly, in our minds this was the only treatment that promised to remove the cancer quickly and completely.  

Like most men facing a similar operation, the possibility of erectile dysfunction loomed large in my mind, but a friend perceptively pointed out that the worst form of erectile dysfunction is death, so what on earth was I worried about! 

In November 2008, Mr Ed Streeter performed an open prostatectomy at the Kent and Canterbury Hospital - and I shall be forever grateful to him and his colleagues for the skill, kindness, and care they showed me.

Thankfully, the side effects of surgery have been minimal and, with support from the follow-up team, entirely manageable.

I've remained a member of PCSA Kent ever since, eager to offer newly diagnosed patients and those going through treatment the kind of support I had found so invaluable.  

I've also become a member of Patient Partners where I have had the great joy of working with some amazing patients, carers and professionals in helping shape cancer services across Kent.

If you have lived experience of any form of cancer, or if as a family member or carer your life has been affected by the disease, please consider joining.

In all certainty, you will gain huge satisfaction knowing you are making a real difference to people's lives.

Sara

Hello, my name is Sara Turle. 

In 2010, I was diagnosed with an aggressive breast cancer, in 2020 my husband was diagnosed with a Stage 4 mouth cancer and in 2023, I was devastatingly diagnosed with a stand-alone incurable lung cancer, life shortening most definitely but currently treatable and being held back by my miracle targeted therapy which I am so grateful for. Psychological well-being is hugely important to me.

Over the last 15 years, I have been a passionate advocate for patient partnership, not only within my own healthcare “do with me, not to me” but also with the NHS in general “not, you and us” but “we together.”

Nothing, in my view, gives us all the best chance at best outcomes.

The wonderful people of the NHS saved my life back in 2010 and since 2023, through East Kent Hospital Trust are again all treating me incredibly well with my wonderful CNS Sharon being key to living well with uncertainty.

In truth, the NHS saved my soul too, when my career in education came to an early end in 2014 as a result of side effects.

Who was I now was one of the hardest fallouts of my first cancer but then my partnership work began and has continued through many years with a London Trust, to my move to Kent and work with Tracey and Kent and Medway Cancer Alliance, work specifically with East Kent Hospitals and my role as part of NHSE Patient and Public Voice Forum. No better feeling than trying to make things better for others.

I am also part of the EGFR+ Lung Cancer Group and use my voice to promote the fact that all you need is lungs to get lung cancer.

As a never smoker, I didn't see it coming.

My continuing, hugely varied, partnership work brings my life greater meaning and I am spurred on to do as much as I can, whilst I can.

I am so proud of everything we've done over the years and take great joy from this and the incredible folk I get to do it alongside: together! 

Chris

A routine blood test result in November 2018 came back with a high PSA and possibility of cancer which came as a shock. Suddenly I found myself in a very uncertain 'place' not to mention ignorance around cancer.

The ensuing two months undergoing actual diagnosis was a disconcerting and worrying time; I found it, to coin a pun, very clinical, matter of fact conveyor belt process, fi nding much out by chance, whilst acknowledging extremely busy environments.

When at Oncology Treatment Planning waiting area I happened to notice a leaflet from Kent and Medway Cancer Alliance with strap line 'could you help to improve cancer patient care' - without hesitation thinking things could be better I got in touch - met Tracey Ryan and the rest is history.

Six years on now as a 'patient partner' I am both proud and privileged to have been part of, and ongoing, initiatives working with other team members and clinicians in diverse working group bringing many beneficial changes to cancer patient care.

For me the great strength of the Cancer Alliance lies in the diversity of members both patient, clinicians and support staff all working in harmony but with total openness, frankness and honesty to improve cancer patient care.

Julie

I'm Julie and I am a specialist teacher for cognition and learning. 

I was diagnosed with triple negative breast cancer in March 2023 and had surgery and chemotherapy.

Overall, my treatment was brilliant and I am forever grateful but I did experience some challenges and barriers which adversely aff ected my mental health.

I was signposted to the Kent and Medway Cancer Alliance by my CNS and support workers. 

Since joining, I have had some amazing opportunities - speaking to fourth year medical students about my experience, sharing my feelings of being in Limbo land and having this turned into a video to help future patients, working as part of a fantastic team to formulate a leafl et called Chemo Top Tips for Patients by Patients - the list goes on.

Being involved with the Cancer Alliance means that your voice is heard; you are listened to; what you have to say is important because as patients, we are the ones with experience.

These opportunities really make me feel that I am able to play a small part in helping to shape cancer care and improve experiences for patients.

You can read Julie's blog on Breast Cancer Now website

John

I am a retired mediator and conflict resolution trainer with two great kids in their 20s and a marvellous supportive wife for almost 30 Years.

I was screened for cancer in Whitstable in April 2021 and diagnosed with fairly aggressive prostate cancer after four scans in September 21.

I received and am still receiving hormone treatment which is keeping the cancer at bay.

I have written a journal with some self-help material about being diagnosed with and living with prostate cancer

I got involved because I wanted to use my cancer experience to give feedback and share ideas on existing services and support in a constructive way.

I also wanted to learn from existing brave, articulate group members who have experienced some amazing, challenging cancer experiences.

I have been a partner with NHS cancer engagement groups through different structural changes for almost 15 years. During this time, I have tried to bring an indirect perspective of the wider group affected by cancer.

But am the first to acknowledge that I am not the person who faces the reality of a cancer diagnosis and how it affects so many aspects of a person’s life.

The experiences I can share are how it feels to be faced with anxious waits to arrive at certainty, as if life is on-hold, and then the inevitable what happens next.

From a personal point of view, my lived experience is as a mum. My daughter had her first diagnosis in 2010 when she was in her early 30s, which was breast cancer, and then exactly 10 years later for cancer of the salivary gland.

Again, building on my own experiences, there are so many considerations beyond the essential clinical ‘givens’, such as financial, professional, childcare and the engagement of a support network of family and friends, with every component playing its part.

Something that did surprise me were the psychological impacts of cancer, which were much longer-lasting than I could ever have anticipated, and crop up at different times for my daughter and for me too.

I have found being a patient partner hugely rewarding. especially when there are tangible ways to show how lived experience is valued and utilised by NHS organisations.

Recently, I was pleased to contribute in a small way to the Limbo Land activities, but managed to avoid being filmed. 

I did, however, produce a short narrative from a mum’s perspective to accompany the videos.Prior to my time as a patient partner with super people at the Working Together Group and the Cancer Alliance, my working life was spent in the public sector.

I am very fortunate to have spent many years enjoying what I do. Lastly, I am so grateful to the excellent cancer teams who have looked after my daughter.