Hello everyone!
apologies not been contributing much in last 12 months and only checked in occasionally. Largely due to the fact that Steve’s Mum was diagnosed with a large tumor and 12 months to live (she was an active 90 year old living on her own about an hour away from us)… so a lot of our time has been spent putting her first; things came to a head in November when she fell and broke her hip, had replacement, but then became very frail and the cancer took over: we have her settled into a nursing home near to us where we spend time with her most days, she is on palliative care and we are told only has weeks.
So this has hindered our continuing journey to solve Steve’s ED and incontinence issues!
this is where we are NOW:
1. ED - appointment in Sept 25 with clinic (which took six months to get); prescribed Viridal Duo; we now have a stock pile as gets 4 a month, but no follow up appointment as promised to show us how to use them! Now I’m a brave woman….but…I’ve resisted the temptation to have a go for fear that Steve would have a bad reaction to them! Continued chasing up for the appointment and now got in at a neighboring hospital 20 miles away within same trust, for next week!! (fingers crossed!)
2. Incontinence: finally got to see an excellent urologist who spent time doing some tests to find out why Steve was still incontinent 2 years post op (no one has done this before). Turns out the space between pelvic floor and bladder sphincter is too great for the muscles to seal it effectively (although the sphincter itself is not damaged and); apparently goes back to the difficulty during RARP to reconnect the urethra to bladder.
so, on wait list for AUS with same surgeon who tells us, in his opinion, lifespan of procedure is closer to 7 years so Steve would likely need it doing again in the future.
We have had no answer from the urology department where the RARP was done as to whether they will refer him to Reading, which is the only place the newer ATOMS op is carried out. We do feel that this is a solution worth exploring as although no less invasive a procedure than having AUS fitted, there is no manual operation needed.
so, with this in mind, once we are no longer worrying about Mum, we are going to pay privately to visit the Reading consultant (who also has a private clinic)
….and that’s about it! Have a good weekend everyone!