Another Year in the Life of a Patient with a Voice

I'd like to look back and reflect on another year of living with stage 4 prostate cancer. It would be fair to say that it’s been lived to the full and very much in the public spotlight, thanks to my prostate cancer awareness-raising profile.

Raising awareness to help others

I guess the starting point has to be that I hit my 5th cancerversary on 9th May and have had four more PSA tests. As of my writing this, they are all showing that my PSA remains undetectable and my first line treatment is still keeping my cancer at bay. It seems that I am something of an outlier in that respect, but long may it continue.

I have continued my work as an awareness raiser and awareness speaker for Prostate Cancer UK. I have done c. 30 awareness talks and spoken to well over 1,000 people. I’ve also done numerous radio interviews, a regional TV interview, 2 podcasts, and been featured in the press, including the national press, a number of times. I was even invited to speak to a local school’s medical society and to take their 6th form assembly. I have a new generation of evangelists telling their fathers and uncles to get tested!

Connecting with medical experts

I’ve also continued my work trying to improve the lot of men living with prostate cancer and to prevent men being diagnosed too late. Fostering relationships with leading experts and researchers on prostate cancer has led to a number of amazing opportunities, including the chance to visit The Institute of Cancer Research (who developed Abiraterone) and do a presentation about living with prostate cancer, and then to hear about the amazing cutting-edge work their scientists are doing to produce the treatments of the future.

The relationships that I’ve developed include experts all over the world, and they now have an online running community called #teamtony. They tell me that I inspire them, through my own exercise, to exercise themselves. One expert based in San Diego tells me that he quotes my example to his prostate cancer patients to encourage them that they can do more than they probably believe possible. If exercise were a pill, I think we’d all be taking it!

Changing the conversation around PSA testing

PSA screening in the UK remains controversial, but thankfully we are seeing Europe start to talk sensibly about screening using PSA as well as the leading UK charity, Prostate Cancer UK, looking at changing their consensus view. I was part of a workshop of leading experts and patients who led on this important work.

It has been very interesting to be a patient influencer working on the development of online tools to support prostate cancer patients, and I hope our community will find the tools of great help. I’m very impressed by what I’ve seen so far.

Encouraging exercise

My other area of work supporting fellow cancer patients has all been about exercise. As a patient representative for Prehab4Cancer in Greater Manchester, we continue to see patients getting great outcomes from being offered prehabilitation prior to cancer surgery/treatment, and saving valuable bed days to prove that the program is value for money.

It’s great to be a patient voice for other patients and help shape the program from a patient's perspective. We were delighted to win some major awards during the year as well!

Talking about awards, I was delighted to also win a personal award as North West of England Male Champion Awareness Campaigner, and to be presented with a lovely trophy at a gala ball event.

Still lots to be done

It was a busy and very productive year, but finally I have to reflect on the fact that many men diagnosed around the same time as myself have unfortunately passed away. I’ve been so very lucky to have responded so well to treatment, and I see it as my calling to use that luck to improve things for the next generations of men. We’ve achieved a huge amount, but there’s still lots to be done moving forward!