Dad has been given a terminal diagnosis but had a first and final blast of radiotherapy last October. He had an aborted cytoscopy in January and will now be going into hospital on Friday to have the cytoscopy under an epidural.
Das has a severely weakened heart (running at 20%), kidney and liver disease after his heamaturia was left to take its cours over an 11 hour wait in A&E resulting in sepsis.
There is no further treatment he can have but he is exhausted through being up every night every hour to pee which takes a great deal of time. He is also experiencing both bladder and bowel incontinence. I am looking after dad on my own. We rarely have contact from the Dr's surgery unless I ask them for something, we have no oncology nurse to contact and just about everybody we've met so far gives us such little information we don't know what to do with ourselves.
Dad is getting ever more depressed and I really do feel that if somebody took the time to sit down and speak to him about what to expect in the coming weeks/months/years (unlikely I think), he might at least come to terms with it better instead of never knowing. We know he had high grade aggressive urothelial carcenomas G3 T2 back In April last year but we still know no more information other than there are no further treatment options available other than palliative care. Dad doesn't appear to have any pain and he isn't loosing weight because eating seems to be the only pleasure he has left in life.
When will we ever get a prognosis, be told what to expect on this journey we are now on. I just want some clarity, to not just be left alone not knowing what could happen, that what is happening now is 'normal' for his stage of this disease but we have nothing. I am even terrified that dad won't get through the procedure on Friday, he is just so tired, his breathing is really bad and he is dreading the procedure so much, I am half expecting him to tell me to take him home on the way to the hospital. I am doing everything I can to take care of him but why is there so little information or the information I'm reading doesn't relate to dad as we skipped any kind of chemo after his second TURBT. I'm ranting, I'm doing my own head in, I'm frantic and alone trying to care for my very scared 84 year old dad.
I do know the feeling of we will know more after these tests, mine was your only 50 we don't want to do that op (cystectomy) so we will look at alternatives that was 8 months ago and now it appears to have spread and be too late. But as you I ask questions and I work in the NHS and have even chased things internally (2 week rule being arranged for 6 weeks)
It seems a very similar mess around to yourself it took me 3 times of contacting PALS before they actually did anything and it has been passed on to the Directorate Manager for Urology who is looking into it (doesn't help me now but may help someone else)
Do you know the Urology consultant you saw ? have you spoken to their secretary? If not contact the hospital and ask for the secretaries number if you don't know the consultant ask for a urology secretary as they will all know each other if not work in the same office.
I really hope you get some answers it simply should not happen 
