"Communication seems to be a considerable problem"

My 83 year old husband had an exploratory examination of his bladder, having had blood in his urine, which found small growths.

The actual operation, transutheral telescopic resection, was performed at end of Dec. My husband was discharged the next day, having passed the fluid test only at the third attempt for discharge without catheter. Had he been discharged with a catheter I don’t know how we would have managed, as my husband suffers from peripheral neuropathy (as a side effect of capacitabine for bowel cancer 16 years ago), I am not medically trained, this was a holiday week-end and there seems to be no connection to nursing support. The discharge letter is only for the GP, no information for us at all. Medically we cannot fault the staff, but communication seems to be a considerable problem.

We had been given printouts about the procedure from BAUS, including aftercare notes. Maybe we were taken through these after the exploratory examination, but no-one checked that we had taken the information on board. We were never given any advice on recovery at home, which we would have welcomed, only a brief that if he can’t pass urine contact SAU at WGH straight away, delivered orally, not in writing (Did I hear that right?  Holiday weekend! What number? How do we get there?).

Nowhere was there any practical simple information (our children suggested filling a measuring jug with 2 litres of water and making sure my husband drank it morning and afternoon. This was after the first night was a concatenation of messy accidents that could have been avoided)

At the moment he still has blood, sometimes clots, in his urine, but is otherwise OK. Why is there no checkup reassurance service? Can someone tell us how long this can go on for? I look things up online, which is very alarming. We will phone the GP tomorrow. 

We have now been to the GP who says the he blood thinner my husband was prescribed by the hospital as a result of the pre-op is implicated in the continued bleeding. He also shouldn’t have been lifting moderate weights like freezer drawers (mentioned in something I looked up online, but not in our discharge notes)

Otherwise the doctor is looking at a few more days before being concerned, and urges continuation of the 2 litres water a day regime.

I still feel very alone & wish I slept better at night.