Where am I?
Pissed off. Worn down. Desperate for some control back in my life.
You may remember that I had my prostate removed last October after the original cancer cells reseeded in that small, useful organ. The consequences of that surgery have been pretty dire. Eight months on, I’m still not fully continent (coughing and laughing is no laughing matter) and I’m still impotent. Nevertheless, every cloud has a yadda yadda and the 3 monthly scan back in March revealed that I was cancer free. After a discussion with my consultant, I decided to gamble and not have my next round of check ups for nine months and I subsequently received an appointment date for this coming December. A nine month space opened up and I can’t tell you how liberating and refreshing that felt. I got back to writing the book and gingerly started an exercise programme with a view to returning to the gym in the early summer.
Then about a month ago, I received a notification that my Patients Knows Best record had been updated. I checked and the December appointment had been cancelled and rearranged for the following day. The anxiety kicked in immediately. Why would they bring forward my appointment by 7 months?
I should know by now, not to panic. It has never been because they’ve discovered something amiss. It is always because the hospital admin is a relentless, inhumane steamroller. My 9 month break from their surveillance programme was led by me and that goes against their script that flags me up for action after just three months.
The consultant phoned and said that they hadn’t done a flexible syscospoy during the previous round of checks. I knew that, but had assumed that as all the other tests had yielded positive results, they had decided not to bother. I was certainly in no hurry to have that disgusting procedure done again. I’m cross with myself, because I allowed myself to be talked round and two weeks ago, found myself, legs up on a table, whilst two doctors shoved a camera up my dick. As this was probably the 10th time I’ve had this procedure since 2018, I consider myself an old hand at it, but still find in humiliating. It’s barely painful, but the after effects are unpleasant and undignified.
The doctor found “an area of concern”. “A fluffy bit” at the neck of my bladder. He said that he was 90% sure that it was just scar tissue from all the previous operations and investigations, but he wanted to take some biopsies to be on the safe side. He booked me in to have the procedure yesterday, under a local anaesthetic in the general urology out-patients clinic. This surprised me, as the two previous occasions, I was admitted to the day hospital and ended up staying overnight as both biopsies were carried out under a general anaesthetic. But I’m now under the much more renowned Charing Cross hospital, so assumed they were more competent in these procedures.
So, I arrived at the hospital yesterday. Within five minutes, I was provided with a urine sample bottle and a surgical gown to change into. Ahead of my appointment time, I was called into the operating theatre. Nobody was gowned up (except me). And then, the doctor dropped the bombshell. I had been incorrectly scheduled for a local anaesthetic. The position of the area of concern meant that it was safer for the biopsies to be done under a general anaesthetic. Unfortunately they didn’t have the time, an anaesthetist, or a bed to do the procedure today and I would have to be rescheduled. The whole experience took twenty minutes and I was dressed and back in the car park, before I was due to be seen.
I feel like an ungrateful cunt. Six years on from my original cancer diagnosis, I am still here. My gut instinct (and previous experience) tells me that this latest “scare” is probably just scar tissue and there is nothing to worry over. But there has been a high price to pay in those six years. The first operation led to a hernia that took three years to tend to and has still seriously affected my self confidence and quality of life. The hernia surgery led to sepsis and 7 months of thrice weekly hospital visits to have the wound cleaned and dressed. Depression set in and my fitness levels dropped alarmingly as I’d had four years of not being able to exercise at all. Then, this time last year, I truly believed that I was facing my end and started putting in my place, everything one has to do when one tends to one’s affairs. Thankfully, my end was postponed and they removed my prostate instead and the consequence has been incontinence and impotency.
Clinicians are only interested in clinical matters, so I can’t expect them to be interested in all the other areas of my life that are affected by being a cancer patient. But I am interested in those areas and I have to weigh up all those areas when making a decision about treatment and my future.
I may not go for the rescheduled biopsy, whenever that might be. I might gamble and return to the original plan and have it done during the December round of surveillance. Part of that reasoning is to guard myself against being flattened by the inhumane NGS steamroller.
The deeply unsettling thing at the moment is that I don’t really know what I want to do for the best.