Yes Margot is right, I to wondered why your going so far, but I guess the apt. makes it attractive. And Pat is right as well, if you do the outside bag stoma nurses visit for 6 weeks or more, they release you when you are comfortable with changing your bag yourself, and your happy with your bag choice. I have to say some haven't had the stoma nurses visiting for as long as we did, I don't know why but I can't imagine them not, maybe its insurance or something, recently we were asked to speak to a gentleman who wasn't handling his bag situation very well, the Cleveland Clinic has asked us to intervene to see if we could be of help, finding out they only saw him twice and he was laying down to change his bag, bad idea, standing up in front of a mirror is best. I can't put enough emphasis on the stoma nurse routine, they are your angels coming to visit for sure..for this gentleman the emotional dealings were the worse but only beacuse he didn't have the routine down for his own peace of mind. Ginger
Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet
i thank you for your prayers (all welcome)
yes i know about chemo having gone thru breast cancer (had 1 breast removed) with my s/o
i think i'm alittle relaxed is because "we" NOW have a game plan..as EVERYONE has said..the waiting sucks !!
i know it wont be easy but the help of all the great people on this forumen and family/friends back east..it'll be ok
hoping to be CANCER FREE
Glad to hear you have family in CT and that an apt. is available for as long as you need it after surgery. I realize Sloan is a great hospital, I was just concerned that you thought it wss the only worthy hospital - there are many across the US. I realize that everyone is different and it is your choice to travel to get there and have the surgery in August, but once we had all our options we were much more anxious to get going on the surgery and have it behind us. As you said, everyone is different. Everyone also recovers at a diffent pace as well, so although you can get general information here, you won't necessarily follow the exact time frame someone else has for recovery...if that makes sense. You will also find out after surgery if chemo is recommended. Depending on the pathology reports on the removed organs. Harry's lymph nodes and prostrate were clear, but because the cancer had reached the fatty tissue of his bladder, the surgeon recommended chemo as a precautionary measure. After he was recovered enough from surgery, he began his four rounds of chemo in mid December, with his local oncologist, thankfully no need to travel to Standford for that! Several people at the site have been down the chemo road, while others have not had to deal with it. It, like the surgery and recovery, is not pleasant; but it is a possibility, just wanted you to be aware. We wish you a pleasant journey east, successful surgery, full recovery and will keep you in prayer. Margot and Harry
Hi Grampadonut...i think its great that you have use of an apt for as long as you want...thats really very important...Margot brought up a good point and i'm glad you clarified it. After surgery you will be visited by a stoma nurse several times a week until you get comfortable with your new apparatus and you'll certainly be close to the hospital should there be (and hopefully not) any complications. You can most certainly count on at least 6 weeks after surgery before you would be able to travel comfortably with many stops along the way to get out and walk and keep circulation going in the limbs.
I remember so wanting Dr. Stein at USC/Norris to do my surgery but after an exaustive search to find temporary housing nearby that was affordable it just wasn't feasable for me and i did have other very good surgeons a bit closer...not by much but less than 2000 miles away. Pat
thank you for your concern..
home is in Ct..all family is located there..sister-in law has offered her full apt for us to stay..as long as we want (she would like it if we didnt come back to vegas)
i know usc and other west hospitals are great..but also is sloan-kerrting
after reading all the great comments i realize everyone is different...i'm just trying to prepare (as much as i can) as to whats going to happen to me
Hello Peter - I haven't been active on the site for a while...my husband Harry had his RC in 10/07, went through chemo (as a precautionary measure) and is now back to work at his seasonal job (he's retired and works Apr - Oct to keep himself busy.) I may be jumping into the middle of this conversation, but I have a few comments and questions myself. You live in Nevada and are going all the way to NY for surgery to get the outside bag? We live in central CA. Harry was diagnosed in late 7/07. After trips to the urologist, oncologist, and scans and tests the PET scan showed only bladder involvement. By this time it was late-August. After discussion with his local oncologist regarding treatment options, Harry opted for surgery. He wanted to put-off surgery until after his seasonal job came to an end 10/31, since it had been several months with all the testing, etc. but the oncologist recommendation went something like this..."we needed time to do all the tests to determine location and to see if there was other spreading (thankfully not) and now is the time to ACT (he emphasized this!) - don't put it off any longer!" His local urologist offered him the outside bag, in surgery performed at our local hospital, but, due to Harry's otherwise excellent health and age (61) the uro suggested we see a specialist (Dr. Gill) at Stanford Medical Center, about three hours from our home regarding the neo bladder. An appointment was scheduled in mid Sept. and after the consult the surgeon scheduled the surgery at his next available time 10/1/08. It was our understanding all along, that the outside bag was not as complex a surgery as for the Indiana or neo bladder, that's why several urologists perform it here locally. We opted for the neo bladder so needed to travel to have it done. The reason I bring this up is because you live in Nevada and are traveling to NYC to have the outside bag surgery? I don't understand the need for this; especially when there are west coast hospitals, Stanford and USC (both top notch)in CA that I know about and another in AZ where someone else on the site (Peter K?) had his done (and I think he has an outside bag). Also, you've asked about the surgery and recovery. Harry's lasted 5 hours, but like one friend who already had his prostate removed said, it was like having three surgeries, one to remove the bladder, one to make the neo from his intestines and one to remove the prostate with the nerve sparing procedure! (WOW, pretty intense if you think of it that way) Recovery is rough. Bowel problems are common. Getting them to "work right" is a trial and error kind of deal - even with the outside bag for Gene, Ginger spoke to that issue repeatedly. You mention traveling across country visiting friends prior to your surgery (which isn't scheduled yet?), but how are you going to get home? We thought being three hours away from Harry's hospital was bad if there had been any complications after he was released...(there have been bowel issues for some after original discharge that require re-admittance) If you are discharged within the week or so (usual time frame from surgery to discharge), I assume you are still going to have some soreness (maybe "more" than "some"),like I said, maybe I am getting into the middle of a continuing conversation, and this is none of my business, but we'd personally much rather be closer to home when facing this surgery and the recovery it takes, but that is just our opinion. Harry and Margot