A frustrating week on the medical side, a fun week on the ukulele side. The good news is that the aching in my lower back and pelvis subsided and by Sunday it had disappeared; the most likely explanation is that it was a ‘flare’ of bone marrow growth replacing ‘ex-tumour’, which is great news. Also, my other side-effects had pretty much disappeared, I had the last vestiges of anaemia, but that’s about all. More frustratingly, by the time we left for our weekend in Bognor Regis for the South Down Music Festival, I had still heard nothing about my next appointment. Still, I put it to one-side, determined to enjoy the festival.
We headed down to Bognor on the Thursday, Shirley and I were accompanied by our dear friend Jeremy. After a short stop at Cowdrays Farm Shop in Midhurst, we arrived in Bognor at around 4:00pm. Our apartment was right in the centre, literally two minutes walk from the ukulele tent. The accommodation itself was basic, but adequate for our needs. We had a superb meal out at Café Punjab, very near our accommodation and well worth a visit if you’re in Bognor, especially if you’re vegan – vegan options were thin in the ground in Bognor.
Friday was the first day of the festival, we spent the afternoon in the ukulele tent, watching and, occasionally, joining in with other ukulele groups. In the evening we had tickets to the paid concerts, we saw Megson (who were excellent) and Phil Beer, an incredibly accomplished multi-instrumentalist and former member of Show of Hands. Saturday started early with a ukulele song-writing workshop at 10am. This was followed by a visit to the parents of one of our group members, Jo, where we were joined by our friends Pat and Mick for jam. In the afternoon / evening, we spent more time in the uke-tent, experiencing The Mighty Lemons for the first time as well as enjoying a Hedge Inspectors led jam, later we explored some of the other venues – very enjoyable. On Sunday, another uke-workshop at 10am – basic lead playing – and then we went in search of Sea Shanties. We ended the festival at the final paid concerts watching Ed Goodall and Three Daft Monkey’s, overall a great festival. BUT, still no appointment, an issue to be addressed.
I waited until midday on Monday and then got to work. There was no obviously simple route to get hold of a member of my oncology team. I started with the oncology hotline, they tried to connect me to a team member with no success. Next, my consultant’s secretary, no answer. Finally, I called the Prostrate Cancer charge nurse where I got through to an answer phone. I left a message explaining that I was expecting an appointment this week and none had been arranged and, most importantly (and concerningly) for me, that my Daralutamide would run out on Friday. The nurse got back to me within the hour and assured me that she would chase things up with my consultant about an appointment and that I should get my bloods done as usual on Tuesday. Bloods were done Tuesday lunchtime, for some reason it was very quite in the cancer centre at that time – curious – and my appointment came through, a telephone consultation on Wednesday morning, this was the prelude to a frustrating phone call.
The consultant, well a member of my consultant’s team, called around 11am. They started with my blood-work, PSA 7 (great still falling), ALP 132 (essentially in the normal range, excellent, I thought it may have been higher following the flare), then on to how I was feeling, coping with side-effects, then any questions. What about my scan? A pause, a request to wait, eventually: ‘Your uptake was down, but your chemotherapy might be extended to ten cycles’; a flood of questions: Why? What does that mean? When might this start?, etc. Another pause: ‘Actually, I’m not sure, let me speak with <The Consultant> and I’ll get back to you’. Shirley came in and I briefed her on the call, four more cycles, possibly! Although the side-effects were more than manageable, it was not the news I was expecting, and (despite ourselves) we started thinking about the implications of this ‘possible’ circumstance. Fortunately, within the hour the junior consultant was back on the phone: ‘The scan was good, uptake was down and no further chemotherapy would be required’. Phew, my next consultation would be in four weeks and my bloods would be checked. If that was all fine, I would go into ‘watchful waiting’ with an extended cycle of consultations, probably every three-months. This was more like it and pretty much what I had been expecting. A few questions concerning whether I could have the odd (alcoholic) drink, travelling overseas, resumption of ‘intimate encounters’ and of course how do I get more Daralutamide: ‘I’ll write a prescription today for collection in Friday’ – Yay!
On reflection, I should have asked more question about the scan, but the possibility of another four chemo cycles knocked me off my game - considerably. I have to assume that the troublesome nodules around my spine, which were identified as possible targets for radio-therapy post-chemo, have been reduced or eliminated to the point of no concern, I also didn’t get an update on the lymph nodules. I pretty much knew that the bone mets had reduced because of the flares on the last two / three cycles in the lower-back, pelvis, shoulders and ribs – all the places I had ‘bone-aches’ when the cancer was spreading. I’ll get more information on the scan when I have my next consultantation – just for interest really.
So, how do I feel? Somewhat deflated really, as does Shirley. The outcome is pretty much what we expected and what was realistic – I’ve done lots of reading. The chemo has done its job in reducing the cancer. On-going, the Relugolix and the Daralutamide will be able to control what still there, and maybe reduce it a little more, at least until Desdemona gets feisty and decides that there’s an alternative to testosterone. But, however slight the chance, the possibility of an outstanding result, with the chemotherapy reducing my tumour to an insignificant level, was at the back of both mine and Shirley’s mind; that’s now been shattered.
Hope is a curiously fickle beast at times, it can hide in the crevices of the realistic, it prays on the slimmest of possibilities, hardly noticeable until the ‘moment of truth’ and then ‘bang’! Like the poppling of a child’s balloon, it’s gone, and the reality of the situation confronts you: immediate, stark and cold. Desdemona may have been contained, but containment is all that’s been achieved. She’s prowling around, looking for chink in my metabolic armour, a moment of genetic luck, giving her the opportunity to break free and run riot. She may be contained for months, hopefully years, but break free she will, but that’s a story for another day.
Today I will celebrate, there has been true success, I am in an immeasurably better place than I was in late March and I am blessed that I have wonderful life, a gorgeous wife and a plethora of friends to enjoy for however long I’m here. Thank you everyone.
