I Never Saw That Coming

I decided to go up to Blackpool to spend my 65th birthday with my younger brother and niece. Once again, I found myself at the bowling alley and crazy golf course. I am not claiming victory at either contest, but I did get a strike and a hole-in-one. The highlight was, however, a trip to Lancaster Castle, formerly HMP Lancaster Castle.

I walked through the gateway and was immediately surprised to see a Norman keep, instantly recognisable by its round window arches. It was all there, various building phases, Norman, Elizabeth I, Georgian and Victorian. The icing on the cake was, however, the unexpected Lancaster Priory, one more notable church ticked off the list.I visited the East Lancashire Railway at the end of June for their Diesel Gala – another trip down Memory Lane. Many of the locomotives present were retired before the millennium, some still soldiering on in service today. I remember travelling behind many of the locomotive types in the 70’s and 80’s before BR scrapped them. Some which were saved and purchased by enthusiasts are still in use on heritage railways today.

I recently passed the 4th anniversary of starting my “journey.” I had gone to my GP with “tummy ache,” expecting a tablet for wind. I left with a two-week wait referral to the colorectal team. The diagnosis was longwinded but eventually I was allocated a standard class ticket for my journey. I mean that in a relatively positive sense, having received that standard of care throughout my journey. I was fortunate in having a reserved seat on the slow, stopping train, going via Edinburgh with numerous stops, rail replacement bus services, engineering works and line closures.

I think the biggest change of my life is due to 4 years on hormone therapy – or, more accurately, treatment to prevent the production of testosterone. It would have been curious to have done some baseline tests on my physical and cognitive functions before I started treatment. Without a doubt, there has been a lot of change – fatigue, stamina, loss of strength to mention just a few – but the biggest and most notable change in my opinion is emotion or cognitive function. A few weeks ago, I got in my car, drove out towards the main road, and had a very senior moment. I thought, “Left or right?”, then my mind said, “Hang on, it’s more basic than that. Where do I want to go?” It was over in 2 seconds, as I made the correct turn to my intended destination.

Having checked my diary every night, I have taken to writing appointments and other activities on an A4 sheet of paper and placing it on the floor in the lounge. There is huge potential for mistakes. As my GP surgery does not send out any reminders about my next Prostap injection, I must arrange it myself, so when I have an injection, I write it in my diary, then write another reminder 4 weeks before the due date to remind me to make an appointment.

I have frequently mentioned my constant battle with emotions and indicated the help I am receiving. For some reason, on the anniversary of my journey starting, a PCUK spokesperson appeared on BBC Breakfast to advise all men in the at-risk group to go for a PSA test. This triggered a stream of insults and swearing hurled at the television. “Thanks for the f……. advice, just 5 or 6 years too f…….. late for me!” Fortunately, anticipating some need for support, I had calmed down by the time I got to Cheltenham. It does, however, show how we cannot prepare for every situation. Something will always catch you out.

I could get bitter about my GP’s failure to offer any advice about PC. Rather oddly, I was visiting my surgery every year for an MOT and blood test. My practice probably saved £10 every time they failed to tick the PSA box. Let’s compare that to my on-going treatment costs:

In total over 170 appointments and procedures, not counting the help I have received from Maggie’s and St Richard’s Hospice. Well done, GP! You saved maybe £100 but look what being metastatic at diagnosis has cost the wider NHS.

Here’s some simple maths: at the time of writing, it was 1525 days and 171 formal appointments, not including the calls to my CNS or helpline. 1525 divided by 171? The answer is 8.91. Okay, what does that mean? What it means in simplistic terms an appointment with my GP or hospital teams on average just short of every 9 days, calendar days, nominally three a month, for the last four years. It takes a lot of effort being sick with a life-limiting disease!

Mark Howard