My name is Johnstone
Three years on, I am back to living a reasonably everyday life
It all started on 29 January 2019. I was an extremely fit and healthy 64-year old still working (part-time) as a GP. After a highly vigorous spin-cycling class with the instructor shouting at us, I started passing blood in my urine (haematuria) when I got down to the changing room. It was so heavy that clots later stopped urine flow, and I thought I would have to be admitted. After quite a bit of water to flush the system through, it thankfully cleared. Being a doctor, I had diagnosed myself with bladder cancer by that time!
I saw my GP the following day. On 4 February, I had an ultrasound scan, and when I returned home that afternoon, the phone was ringing. My GP informed me that there was a lesion blocking the right ureter from my kidney. An appointment had been requested for an urgent urology appointment to have an outpatient cystoscopy and CT scan.
The outpatient cystoscope was on 18 February 2019, when bladder cancer was confirmed. It was a fairly horrendous experience, mainly on receiving the news that bladder cancer was approved and that there would be a 6-week wait for further investigation.
Eventually, my appointment came through for 1 April 2019 for my outpatient TURBT (general anaesthetic trans-urethral bladder tumour resection and biopsy of bladder tumour.) That is when I met my bladder cancer specialist. Before the surgery, he explained the procedure in great detail. He tried to reassure me that he thought we had caught it early (despite the doctor in me having already recognised the need for radical treatment as I had updated my reading of the most up-to-date Bladder Cancer Guidelines!)
The following day, he broke the news that the tumour looked like it was “muscle-invasive”, and radical surgery was required in the form of a radical cystoprostatectomy. After a pre-op CT scan a couple of weeks later, I had the surgery on 30 May 2019. So that was almost 17 weeks after my initial symptoms. Seventeen weeks of emotional torture but possibly quicker than in many other parts of the country. Fortunately, I needed no further treatment.
Who knows. My spin cycling coach may have saved my life? (As well as, of course, by my excellent bladder cancer surgeon!)
Three years on, I am back to living a reasonably everyday life and spin-cycling strenuously three times a week. Getting used to having a urostomy (my urine was delivered into a stoma bag) took a while getting used to. Living with the fear of recurrence rears its head when my regular CT scans happen, but I cope with that more easily than in the early days. Support from my cancer nurse specialists and Edinburgh “Maggie’s” has helped me live life to the full every day now and be positive.