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)
This point in time is the absolute most stessful, learning the terminology and the lay of the land is a difficult thing but I think you'll find you feel better after you see that people do survive this diagnosis and the surgery as well.
Please keep us posted on the outcome of the upcoming tests.
All the best to you and Gene,
Dear Ginger and Gene....well you're in a great place at The Cleveland Clinic...Thats where i had my radical cystectomy done laproscopically by Dr. Inderbir Gill.(I have an Indiana Pouch) There's another forum member who had his neo-bladder done by Dr. Gill...Roger Barton.....he hasn't posted for a while but he's in the storyboard section.
Which ever way you go laproscopic or conventional the urological surgeons are quite good where you are. There is a ton of information on this site on the various types of pouches and what to expect before, during and after surgery.
Please keep us informed and we'll try to guide you through this difficult time......but you've done good homework and are at an excellent facility.......Pat
Well I hope someone can help us. My husband is 67. In March he noticed he had no energy, he lost 20 pounds in 2 months. We went to the Doctor as he had blood clots in his urine, after tests and biopsy he had a stage 111 T-2 tumor removed. Now we go to the Cleveland Clinic where they are doing there own biopsy Tuesday to see if bladder removal is the only answer. So far they have said from the previous tests done that that is most likely to be the case. We are in shock, and trying to cope with all of it.
Its like a nightmare. What can we expect at the time of surgery, before and after. We haven't decided yet on what we will have in the bladders place.
Any kind words for us?? Ginger and Gene
Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet