There have been plenty of ups and downs in my cancer journey, but one thing that has made my experience different is the way my brain works.
I’m what you might call neurodiverse, with ADHD and autistic traits. That means the things many people find easy, I find difficult. And the things many people find difficult, I find natural.
Living with prostate cancer as a neurodiverse man means my experience of illness and treatment doesn’t always fit the usual template. I don’t process things through casual conversation or emotional sharing; I process them through structure, patterns, and meaning.
My ADHD and autistic traits mean I need to understand why something is happening, whether it’s a side effect, a blood result, or a sudden policy change. My mind is always seeking coherence. That’s both exhausting and grounding: exhausting because I can’t switch it off, grounding because it keeps me oriented when everything else feels uncertain.
In many ways, my neurodiversity has been a survival tool. Hyperfocus helps me learn about treatments in depth. My need for clarity drives me to ask questions clinicians sometimes avoid. My tendency to document and analyse allows me to notice patterns others might miss. It’s not an easy way to live with cancer, but it’s an honest one.
I was diagnosed at stage T2c and my PSA - a level of protein in the blood that can indicate cancer - was 13.5. For a man of 53 it should have been below four.
In February 2008, my prostate was removed, and over the next three years, I was treated with a hormone suppression drug called goserelin (Zoladex) and 25 rounds of external beam radiotherapy.
Then in September 2018 I learned the cancer had spread to my bones and was now classed as stage 4. I had six sessions of chemotherapy, plus lifetime chemical castration with goserelin.
My PSA fell and was low until May 2025 when it shot up. Now I’m on a trial for a new treatment called MEVPRO-2. My PSA has gone right back down again, so it looks like it’s working.
I’ve always been driven by curiosity, by needing to understand rather than just accept.
Give me a technical problem, a piece of research, or something that needs unpicking, and I can lose myself in it for hours, days, or even weeks. Where small talk scatters my energy, deep focus brings me calm and clarity.
That’s how I’ve coped with prostate cancer. I’ve read, researched, and understood my treatments. I’ve made sense of what’s happening by using metaphors and analogies that help me explain it to others. I’ve written, recorded, and reflected on my journey, often on my own.
Translating chaos into something visual and logical
My chemo chart and medical file requests are part of how I regulate uncertainty. I need to see what’s happening, to map it, quantify it, and understand the sequence. Otherwise, the treatment process feels chaotic.
For a neurodiverse brain, order brings calm. By graphing my PSA results or logging side effects, I translate chaos into something visual and logical. It’s not about control for its own sake, it’s about comprehension.
When I understand a process deeply, I can engage with it emotionally too. Without that clarity, everything feels like noise. So my record-keeping isn’t just data management; it’s self-management. It’s how I stay connected to my body and to the science keeping me alive.
What I know is that research is vital and it is so important to find better, more effective ways of treating prostate cancer because some of the current treatments have side effects that are hard to live with.
Research can be so valuable
In 2018, when the prostate cancer had spread to my bones, I benefited from the results of the ICR’s STAMPEDE trial, which aimed to improve treatment strategies for men with newly-diagnosed advanced prostate cancer. So, if that research hadn't been carried out 10 to 14 years ago, I wouldn't have benefited.
I'm of the generation that remembers when HIV started in the early 1980s. And at that time, it was considered a death sentence for people who had it. But now, 20 - 30 years on with lots and lots of valuable research, it’s a condition that can be managed so well.
I remember the devastating effect HIV had on friends of mine and colleagues at work, and my partner at the time, who died of cancer as a result of having AIDS. The research, which has happened over the last 30 – 40 years, has meant people can live with that condition much more easily.
Building belonging while coping with ‘chit-chat’
When most people think about coping with prostate cancer, they think about talking; chatting with friends, sharing feelings at a support group or leaning on others. But for me, what people call ‘chit-chat’ isn’t easy at all. It looks simple from the outside - a few words about the weather, the football, or what you’ve been up to- but underneath, it’s a complicated dance of reading expressions, remembering details, knowing when to nod or laugh, and keeping up with fast changes of topic.
For neurotypical people, this happens automatically. For me, it’s exhausting. I can last five or ten minutes before I need to get out. To me, ‘chit-chat’ feels meaningless, yet I’ve come to understand that for others it’s actually serious - it’s how they build trust and belonging.
Over the years, I’ve even been invited to places like Kensington Palace and the House of Commons to be recognised for what I’ve done in prostate cancer support. For many, those are dream opportunities. But for me, the thought of the heavy socializing involved in those occasions has been too much. So, I’ve turned them down.
At the time, I couldn’t explain why. Now I know it wasn’t fear of the recognition, it was knowing I wouldn’t cope with the endless ‘chit-chat’ that surrounded it.
Shaping support groups and thriving in the structured
One of the most meaningful things I've done is set up and run prostate cancer support groups.
Firstly, I established a much-needed local group in Lancashire, which is still going strong.
I also found that as a gay man, my needs weren't being met, so two others and I started another support group called Out with Prostate Cancer.
I also found that we often don't have the language to talk about prostate cancer, so I formed another group called Shaping Prostate Cancer Literacy, to allow men to explore the language and the literacy we need - not only to talk to ourselves about prostate cancer, but to talk to other people and help other people talk to us about our prostate cancer journey.
I loved creating the structure, shaping the meetings, and making them purposeful. But what I realise now is that, over time, many of these groups naturally became more social. People would head to the pub afterwards, or the focus would drift into ‘chit-chat’.
That’s when I would step away. I didn’t plan it that way, but I found myself leaving those groups in the hands of others once they became more about socializing. At the time, I didn’t understand why. Now I do: I thrive in the structured part, not the unstructured part.
Advocating and coping in my own way
I don't think of what I've done as achievement in the usual sense. It's been more like following curiosity where it leads. Each support group, each trial, each project grew out of a questions I needed to answer: What's missing? Who isn't being heard? Why do some men withdraw when they most need connection?
I’ve never been the life-and-soul-of-the-room kind of advocate. I’m the one who builds frameworks, connects ideas, and then steps back so others can take them forward. That’s my version of leadership, quieter, but sustainable. My way of coping with prostate cancer has never been about ‘chit-chat, it has focused on:
Knowledge: turning uncertainty into understanding.
Reflection: writing, recording, and unpicking my thoughts.
Purpose: contributing to research, trials, and one-to-one support.
Boundaries: knowing when to step away from what drains me.
It might not look like a typical way of coping. But there isn’t just one way to live with prostate cancer. And sometimes, the differences in how we cope are strengths in their own right.