Hi Kristen:
My husband didn't want to read anything either. He just decided that having a positive attitude was going to be his strategy and that if he avoided the data he would stay more positive.
Me, I compulsively researched the internet and it was comforting to feel like I was accomplishing something. Also, as time went by I was able to recognize things he was experiencing and tell him, which made him feel more 'normal.'
Here is a partial list of resources that may be of interest:
National Cancer Institute, mednews
http://www.meb.uni-bonn.de/cancer.gov/CDR0000062908.html
(This is for health professionals and not for patients. I registered for access to everything I could and so long as they didn’t ask my degree, I got a subscription. This article is excellent.)
Bladder Cancer Web Café http://blcwebcafe.org/cystectomy.asp
Aurora Health Care http://www.aurorahealthcare.org/default.asp
Use the search feature for ‘cystectomy’
What is a radical cystectomy? University of Virginia http://www.urologyofva.com/radical_cystectomy.htm
Cancer Net http://www.cancer.net/patient/Cancer+Types/Bladder+Cancer
Types of Bladder Cancer
University of Texas MD Anderson Cancer Center
http://www.mdanderson.org/care_centers/genito/display.cfm?id
This is a good article about the T definitions.
American Urology Foundation
http://www.auafoundation.org/auafhome.asp
As far as what to expect, the surgeon is still your best source of information. I hope you are going into the appointments with your mom. I held back my "what if" questions during our appointments and tried to let my husband set the tone for how much to learn. You might watch your mom and let her determine how much is discussed.
This disease is a constant experience of not knowing. No matter how much I read or learned, there was always something I wasn't prepared for. I coped with the unknown by focusing my attention on Phil and what he needed. The medicine schedule, the doctor appointments, the paperwork for the disability insurance, and so on, filled the time. He was sick with bladder infections and he was weak from the chemo so I moved in as close as I could and took care of him. That kind of intensity took away my need to find out what to be prepared for.
It also became a time of intimacy and love that was new to us. Everyone is unique in their responses to life's events but this experience was a closeness we had never known.
I am rambling. When is your mom's surgery?
fondly,
Elizabeth