Update on Michael's Radical Cystectomy

Hi Eileen,
Thank you for the update, and I'm very glad to hear that things will be even less scary than you had been bargaining for. Please say hi to Dr. Schoenberg for me.

Wayne, welcome back! Didn't expect to see you so soon, but happy that you're up to it. Thank you for sharing your experience and I hope your recovery continues smoothly. I have some great guidelines about complementary/alternative diet and life style changes, I will post them soon under that section.

Karen and Eileen, I'm sorry you feel as if you can't freely vent your frustrations, worries and anything else. The forum has a new section especially for caregivers. Hopefully it will develop into a place where caregivers can give and receive the support so badly needed.

Wendy

Wayne, I don't have to words to tell you how happy I am that your procedure went so smoothly. You are *way* ahead of where I was at this stage--and I thought I did pretty well.

Congratulations both on your successful surgery and your decision to have it done in the first place.

And an equal number of kudos to your wife. I am sincerely happy for you both.

Zach

Hi Eileen,

Thats exactly what I meant. No one can walk in anyones shoes. What you are going through with Michael, and what I am going through with my husband are TOTALLY unique. I don't want to feel guilty nor should you for how we are handling any of this. It is a daily and sometimes hourly adjustment to everything that we know as "Normal". I think about you often too. This is the real test of the strength of a relationship. Keep up the good work! PM me anytime too!

Karen

Dear Wayne,

It's great to hear from you and it sounds like you're doing really well, which is wonderful to hear! Did you ask for a private room and if so, were you able to get one? Do you know anything about that special floor on Marburg? I want to spring for it but my husband thinks he won't get as good care. Anyway, if you're already home and walking 5 times around an acre lot, you are one strong guy. My husband was quite happy to read your post. He feels like he's coming down with a cold - I sure hope that if he does they won't postpone the surgery. This waiting is pure hell.

Michael is 58 and had stage T2-T3 muscle invasive cancer. He's going for the neobladder. How uncomfortable is the catheter? Did you learn how to self-cath yet? That's his biggest fear. Also can you ask Patty to give me a longer list of things he should eat after we get home? You're our mentor now. lol! Keep on posting - we really want to hear what your experience is like so we can prepare.

Eileen

Dear Karen,

It's great to hear from you. I am not walking in your shoes, so I can't pretend to come anywhere close to understanding how you must feel, but you sound like an extremely strong person. I think about you all the time. If you really want to vent, PM me and I will give you my cell and home phone numbers. I would be glad to listen - I guess that's all anyone can do. Or else just write - sometimes it's good to just see the words in print.

Eileen

Hi Eileen

As you know about this time last week i had a RC,Prostatectomy done by Doctor Schoenberg. This is the first post i have really made since surgery. Although our computer chair has fair comfort it's hard to beat my big recliner. Its 2:00 in the morning tuesday and wife is asleep on the couch getting some much deserved rest. I have very little pain. Only 1 pain pill today about 9 hours ago. I have been eating soft foods such as home made potato soup, apples,oat meal,etc. Things i know will go through my colon pretty easy. I don't think i am really on any special diet but after my first bowel movement in the hospital i knew i wanted to eat stuff that could get through my colon with ease. They had me up walking the halls the day after surgery as this helps to wake the colon back up. I have a neobladder and one tube comming from around the new bladder area that drained blood and mucos.Very small tube and never really saw much in the container it went to. The other tube which is a cath. They like you to do alot of walking and after you take the first walk things begin to improve from there. I guess you could say i am doing pretty good so far. I walked around the yard (1 acre lot) 5 or 6 different time today. Just thought i would let you know about my experience to this point and hopefully give Mike some comfort. I know Patty was going to PM you our phone number if you have more questions. I want to post a story here at a later date because there is a lot more i could tell someone about all this. I forget mikes age,surgery type,etc. I am going to see if i can find it now. Take care Wayne