well a surreal 24 hours. Part one

Kent Kate my dearest friend teacher in a primary school had rung the night before. Where are you Jacq ? In a groovy hotel in London. Weirdly! We chatted. She told me the giggle of the. Day…her head had been holding forth at the staff briefing that morning. Briefing a good word for what happened next. Clearly finding her suit trousers uncomfortable she fumbled about and eventually stopped the chatter about kids , thrust hand into trousers and pulled out….knickers. ! Aha. That’s last night’s pair she said. Wondered where they’d got caught ! I used that as an opener and it kind of tied in with..we all wear underwear or we think we all do and in the same way we have or had working bladders.

My speech essentially the same drew some laughs and I think hope went ok. I have added that in the next blog.

After all that tripped along toMDT style meeting. I don’t recall being so worried so dry mouthed before a consultation before. And I’ve had a few!
OJ AV and Jerome vs Daniel and I.
In a nutshell 1. Worst are the infections then issues 2.and 3. will not go away. Finding a solution for 2 and 3 involves surgery. Finding a potential solution for 1. Involves Major surgery with risks.

They were good, better than good actually brilliant. We talked about taking the bladder out of the equation. Literally. Conduits and stomas. Weirdly my new found knowledge from the days conference meant I knew what that meant. Goodness knows what poor D thought. We considered risks. We talked mesh. We thought about doing nothing. Doing nothing means continuous uti issues. Ever increasing resistance to antibiotics, threat of sepsis, spinal disc degeneration as previously and higher pain medication. A spinal fusion on the horizon if we do not get that under control.  As ever various risks, as ever the only one you, the patient and he, the patient’s husband, hear is: mortality. There is no nice way of putting it. But as I said later that night. Reckon there’s a higher mortality rate of driving down the m1.
So with surgeons rushing off to save more lives we were left with OJ to summarise by dictaphone, his letter. A very good way to include patient in the process and understanding. Only issues were his asides: his comment that after all I clearly had a good relationship with my husband and could sit on a professional body. What on earth has that got to do with it? Should I be satisfied with that? Should I just sit at home doing voluntary service and caring for my husband? I’m not sure to what he was referring. Perhaps NHS England? But surely he can see if I was not a patient I would not be there. It’s voluntary. If I cannot go it does not really matter. My paid job is still 10 % of what it was. I am unreliable, frequently unable to go to work, ineffective when I am there, drug hazy, in pain and whilst always stoical invariably unable to complete work to the high standards I expect of myself. Mm.

He also asked if we were insured. Our response did not seem sufficient. Yes we are insured. But he said the insurer would be unlikely to pay him the required fee. He’d expect us to pay £5000 or so ourselves. I’ve never heard a surgeon go for the money side like that before. Yes Daniel said, we will pay, if we have to.

Two surgeons, two fees? We could go to UCH but he said, his appointments are booked to October. His operating lists are running 18 months from referral. That. Is not a choice then is it?