Well, I’ve definitely had better weekends. Went to the loo after playing badminton on Friday 19th Apr, unusual colour of my urine. Went home to check wasn’t imagining things, luckily Julie had a sample pot; lovely Merlot colour! Luckily wasn’t working on the Saturday as was on a course on Sunday. Got seen by an out of hours GP on Saturday, confirmed it wasn’t beetroot (faint unrealistic hope) & indeed blood. No pain, no obvious UTI & also in hindsight a first instance of this 8/52 ago - I was over with Julie visiting my mum, we’d been out, I left Julie home & nipped down the road to charge the car, thought there was some blood when I nipped to the garage loo, but there was toilet paper in there so we put it down to a tampon in the loo as when I went again all was clear at my mum’s loo.
Urgent 2/52 referral to rule out bladder cancer. Spoke to a couple of consultants who I play badminton with (neither of them urologists unfortunately) as to whether the 2/52 timescale was aspirational or if it was worth using my private medical; so on their advice seeing urologist on Thursday evening.
idiopathic bleeding or bladder stone (although symptoms don’t quite correlate). Kids don’t know yet as not worth worrying them until get a diagnosis.
Monday 29th April; Bad news I’m afraid; I’ve got bladder cancer - consultant found a large tumour in my bladder last night. Julie was brought up to ‘have a cup of tea’; I told her the consultant had found a massive tumour in my bladder - the nice consultant corrected me and said it wasn’t massive, simply large! CT scan Tuesday 30th April. Should hopefully have an op to remove it in the next 2/52. 
TURBT performed 16th May. Unfortunately, I had a violent jerk (we touched the objurator nerve) during the Op, causing a deep cut into the bladder wall (possibly, but not definitely causing a tear in the bladder wall), meaning they didn’t give me the chemo in the bladder, for fear of that spreading outside the bladder. We don’t know if the bladder wall is perforated, but we should know more in the next few days. Catheter in until Monday because of this. I don’t recommend large catheters - getting it removed was bliss!
Spoke to my consultant on 23rd May, and the histology results are as disappointing as possible; a large 3.5cm was removed, it’s pretty deep into the connective tissue, there’s carcinoma in situ present also and the tumour is high grade (high grade means more aggressive cancer, more likely to grow & spread quicker). The missed chemo after TURBT is now superfluous as ineffective with high grade cancer. There will be a consultant MDT meeting on Monday 10th June to decide on the next play. On the up side, I now feel absolutely grand physically, and even with this latest setback there’s more likely to be a positive than negative outcome! 
Had a good chat with a friend of a friend who’s a urologist. Useful information; you don’t always get high grade bladder cancer with carcinoma in situ (& unfortunately carcinoma in situ is worse in the bladder than other bits of the body). He suggested getting a second opinion from James Catto in Sheffield (they’re apparently world-leading in bladder cancer, possibly due to the high incidence associated with the steel works?) to discuss treatment options (are you better to try a more radical option earlier, such as a cystectomy in a high grade case with carcinoma in situ?)
I spoke to BRI on Tuesday 18th June asking if I could be listed for the radical cystectomy Op; basically if your primary consideration is living the cystectomy is a no brainer (90% chance 5 year survival / 85% if they find some microscopic cancer cells in the muscle lining of the bladder when they analyse the whole removed bladder). Most people choose BCG treatment in the hope they won’t have to have the bladder removed, with the associated body image / urostomy bag problems & loss of sexual functionality. However, in my case BCG treatment at best would probably only kick the can down the road for 3-5 years until cystectomy was needed (with a reduction in positive outcome from 90-75%)! Hopefully 4-6 weeks until Op with 2-3 months recovery.
Friday 19th July - it never rains but it pours!! I’m having a heart CT scan @ 1.30pm & they’re fairly sure there’s something untoward! This has led Mr Chahal to guide my cancer treatment in a new direction;
Big news from my point of view - my radical cystectomy Operation is probably cancelled! There looks to be an issue with my heart, to be confirmed by heart scan this afternoon; we will find out on Tuesday exactly what’s happening. Mr Chahal, my urology / oncology consultant, explained this morning that this heart defect (although yet to be confirmed if / what the defect is) would definitely increase operative morbidity for me. (operative morbidity roughly 3%, with my supposed younger healthy state 2%, but with this heart defect around 8%). 1 in 12 chance of dying on 31st July is too steep for me, when there’s another ‘almost as good’ treatment in BCG immunotherapy. I will need to have a bladder resection carried out in a couple of weeks to take more biopsies. If those biopsies show the cancer has invaded the bladder then I’ll probably have to take the operative risk. If not I can try BCG treatment - there’s a 60% chance this works, which should buy me some time to hopefully get my heart sorted.
I’ve been in no man’s land for the past couple of months with no treatment, but better news now; CPEX test vastly improved 21st August; rather than 45% expected o2 levels up to 77% (80% would be ideal, so certainly not perfect but seemingly enough that Cystectomy back on the cards from both cardiology & anaesthetic point of view) This almost miraculous improvement would seem to be due to the disopyramide medication given for my suspected HOCM (given the medication has worked the Hypertrophic Obstructive CardioMyopathy diagnosis seem likely). HOCM - think Christian Eriksen @ 2021 Euros.
However, there was a fly in the ointment; Unfortunately, disopyramide is out of stock @ present (? Brexit), so cardiologist prescribed bisoprolol as an alternative. I would obviously prefer to stick with the known beneficial medication. I got hold of one box of Disopyramide from an independent pharmacy in Girlington. One of my business partners has a few pharmacy contacts - she knows the Bradford guy & also an online pharmacy contact), so I’ve just got enough to last me another 7 weeks. Mr Chahal happy to go ahead with surgery (back down to 2-3% peri-operative mortality risk), radical cystectomy surgery 25th September. 2-3 months recovery, so hopefully better for Christmas & the New Year
). Surgery was successful, but recovery problematic - Sleep is the best medicine & hospital is the worst place to sleep! Recovery really started once I escaped hospital; my abdominal distension has almost reduced to normal now. Walked down & around the local cricket pitch today, which I found surprisingly tiring, so still some improvement to go, but definitely on an upwards trajectory!
My wife’s been amazing; making fresh bread in our bread maker every other night & transforming into Mary Berry, baking cakes for visitors!
