Hi everyone - hope you are all keeping as well as possible.
I joined you all in September last year when my mum was given a shock stage 4 bladder cancer diagnosis which had spread to the lung with another separate primary all of its own on a kidney. It's the most aggressive kind of BC as well, sarcomatoid - so, put it this way, I don't google it anymore as according to what I read last year, she shouldn't be here now.
Anyway, 12 months on and she's doing not too bad! - she had 6 cycles of Carbo/Gem - then a break, then the bladder started getting symptomatic, so she had a TURBT which has pretty much cleared it all, she's just finished 4 lots of radiotherapy and has just started Pembrolizumab - she's had 2 infusions so far with her next CT scan booked for October and is super chuffed that she has pembro sessions booked into 2021! So I'm very grateful to our wonderful NHS, I really am - we all are - it's just the incontinence that's really getting her down now. (and heavy fatigue), but it's the incontinence that's more of an issue I think - it just gushes uncontrollably - her urge is a lot better, she's sleeping better but it's a painful dull ache and constant leaking, bed wetting etc. She's been paranoid about getting to hospital, not leaving the house etc.
The TURBT was 2 months ago - I'm just wondering if this is a normal side effect of surgery/radiotherapy and that it has a good chance of improving, or has she finally lost all control of the bladder and this will be it now urinary management. The hospital were unable to fit a catheter after multiple attempts - but her consultant didn't really want her to have one anyway, I don't think they like to leave them insitu for some reason - and there's been a lot of shoulder shrugging I think about the incontinence.
Anyway, if anyone has any words of experience and encouragement that would be great - no worries if not!!
Take care everyone x
