Hi, I'm David, here's the start of my story. In mid-January 2026 I had a bout of flu. It was irritating, but relatively light and passed quite quickly. However, by late January I was starting to feel the impact of post-viral fatigue - or so I thought! I was very achy, mostly at the top of my thighs and in my lower back, quite tired and low energy. I knew a number of people who had similar symptoms before and during the Christmas period following bouts of flu, and my gorgeous wife, Shirley, also agreed - so post-viral fatigue it was!
Now, I'm not a 'resting' sort of person, but I was aware that this type of illness can drag on if not addressed. So, encouraged by Shirley, I reduced my activities: I skipped some ukulele club sessions and workshops (thanks Jeremy for stepping in); I reduced my canvassing activities (I was just embarking on an election campaign for a council seat, standing for the Green Party, thanks to Steve and Clare for stepping up there); I stepped back a little from my responsibilities to What Next? (an environmental charity that I chair, thanks to Rieks for stepping in) and Live Your Values (a not-for-profit that I run with Shirley); and, generally reduced my other commitments. As for work, Shirley and I run a small training business, we'd made the decision in 2024/25 to start reducing our workload as a five year lead in to retirement, so February was free of 'work', but March was busy - I'd be fine by March I thought. However, as February progressed things did not unfold as I hoped, the 'post-viral' symptoms got worse, the aches and pains continued and started migrating around my body - uppers back, ribs, shoulders, neck; I was now on a regular regime of over the counter painkillers. As March came around so did my work commitments, most of these I was able to manage, but it was a struggle at times. Fortunately, I was not getting any brain-fog or loss of cognitive function, symptoms which are quite common with post-viral fatigue, this was red-flag to me - I booked a GP appointment, something wasn't right.
My GP appointment was on Friday 13th March (ominous!), the doctor examined me, took my vitals and discussed my symptoms; it did still look like post-viral fatigue. However, to be sure the GP decided to do some blood-work. I gave blood on 17th March and the GP phoned me on the 20th. In my blood-work they included a PSA test, I'd been tested about three years prior as my brother had been diagnosed prostate cancer. I'd been made aware of the symptoms to watch out for, but I didn't have any, my PSA was 257, it shouldn't really be above 4! Also, I was severely anaemic, concerningly so for the GP, we discussed a possible trip to A&E. Shirley and I were quite shocked at the news, but what did this actually mean?
Things then moved very quickly as I was scooted into the NHS fast-lane. I had a urology appointment four days later and, following the necessary 'probe', I was diagnosed with prostate cancer. The urologist immediately prescribed me with Relugolix, which is an androgen deprivation therapy (ADT) drug; ADT treatment lowers testosterone which is necessary for the prostate cancer to grow. Two days later I was back in urology for a biopsy. It is a necessary step, but it's not a dignified process. I had a transperineal biopsy, this involved having an ultrasound probe in my rectum, to image my prostate, and then a biopsy needle was inserted (several times) into my perineum to take samples. All of this was done under local anaesthetic, it was uncomfortable, but relatively painless - in that regard not unlike going to the dentist. The aftermath of the biopsy was a low-point. Fortunately, I finished my work commitments on the day of the biopsy, but the news, the pain, the fatigue and the tests had taken it out of me, I pretty much laid in bed for a week, very tired and still very achy, at least initially. Shirley was wonderful, despite having to deal with the emotional trauma of coming to terms with my illness, she provided support, practical help and enormous amounts of love - as she continues to do.
Next came the PET/CT scan a week later, personally I found this pretty straight forward process, I'd had an MRI about 10 years ago and, apart of the requirement to become radioactive, it was pretty similar. For the scan to work, they have to inject you with a radioactive tracer. The tracer arrives in a metal container, presumably to shield it, and is injected through a standard cannula; I have never seen a nurse operate so quickly when administering an injection via a cannula. Sady, becoming radioactive did not imbue me with any super-powers, but the good news was that by the time of the scan, I was feeling a lot better. Most notably was the reduction in pain which, apart from a dull ache in my lower back, had completely disappeared. I stopped taking OTC painkillers about five days after the biopsy, about a week after starting the ADT treatment - I could only assume that the ADT was having a positive effect.
The formal diagnosis came the following week: high volume, hormone sensitive, locally advanced prostate cancer with widespread bone metastases and bilateral obturator lymph nodes OR T3b N1 M1b, Gleason score of 5+4 from 21 cores. This is what all that means: high volume - lots of cancer, in lots of places; hormone sensitive - it will respond to ADT treatment; locally advanced (T3b) - the cancer had invaded my seminal vesicles; widespread bone metastases (M1b) - a lot of cancer in my bones, but not in soft tissue; bilateral obturator lymph nodes (N1) - the cancer was in the lymph nodes in my pelvis; Gleason score 5+4 - very abnormal cells, the cancer is likely to grow quickly. Fortunately, I'd been doing a lot of research and reading of my own - the benefit of being a former academic - so my formal diagnosis did not come as a massive surprise to us. It was clear that the aches and pains, that I initially thought were post-viral symptoms, were in fact the cancer spreading into my pelvis, spine, ribs and shoulders from my prostate. I was given an oncologists appointment for 22nd April. Shirley and I had a week's holiday booked in Oban, Scotland before that appointment. After the biopsy, it looked doubtful that we could go, but as I improved with the ADT we decided to go for it. This was a great move, we had a beautiful apartment overlooking the harbour, we ate well, relaxed and went on lots of ferries. I was slow but still improving.
The appointment with the oncologist was next, a few days after our return from Scotland. We met a delightful, if slightly skittish, doctor who took Shirley and I through the diagnosis and a review of my PET/CT scan. The latter was quite stunning, the picture of my bones on the PC screen lit up like a Christmas Tree, I knew that the cancer was very extensive, but actually seeing it in my bones to such an extent was simultaneously amazing and concerning. The doctor then started to outline treatment options. My extensive research had led me to conclude that a 'triplet' therapy was what was most likely to be recommended and I had already decided that, if that were the case, I would take that option; it was and I have! I will continue with the ADT indefinitely, I start six-cycles of chemotherapy (Docetaxel) this coming Friday (15th May) and I will be taking Darolutamide which blocks testosterone from reaching cancer cells. I'll also have Zoledronic to strengthen my bones, and the NHS have 'bundled' in an MRI scan of my liver, a DEXA bone density scan, a genetics test and a referral to the enhanced supportive care team (for palliative care) to boot!
It's been a whirlwind so far, from my GP appointment to starting chemotherapy it will be 59 days. Given everything that has been done for me over that period I am quite amazed and extremely grateful. I have found that for me, reading stories of other people's experiences has been interesting, informative and emotionally supportive, hence I want to take some time to share my experiences. And you may be wondering, who is Desdemona, it is my cancer, it is the cancer that I will be living with for the rest of my life, it is part of me and it is likely to be the death of me. So, long live Desdemona, while its alive, so shall I be.
