Ginger, my heart goes out to you. My husband is right now down the hall from me, recovering from his cystectomy. His time from diagnosis to removal probably set some kind of record, so he didn't have a lot of time to consider, and didn't really go through the stages of anger, denial, etc. so he's going through some of it right now.
I'm glad you're in a good place. We were lucky, too, to be so close to an NCI site, and his care has been great. Please consider staying close enough to him that you can spend the days with him. There is a real rhythm to the hospital routine, and once you get it down, you can be of great help to him. You can help him keep track of meds, dressings, names of caregivers, and be his advocate.
I am 58, and my husband is 59, and he had NO symptoms until he first noticed blood in his urine, so he went from feeling fine to feeling like he wanted to die after the surgery.
Keep in touch with this list.....the people here are wonderful and supportive, and a great source of information. Feel free to look for my entries on the main list, or send me a private message if you feel better about it. However, I know that anyone can learn from any of the posts, so I appreciate reading about all the things that people have gone through, and are going to be going through.
Stephany in Iowa (be sure to find all the patient/family waiting rooms....that's where I am now, and it's a nice quiet place to check the list)