Posted 1/6/2007 2:12 AM (GMT -6)
Dear Leandra and Hubby,
Congratulations on your good cardio checkup. I am new to this forum, having just learned about it from my old school friend Tamu (see above). The details of my situation are on a post in the Tamu update thread, I think, but just to say, I am 57, and I, too, had a Gleason 4+3=7 tumor that was thought to be, and did turn out to be, confined to the prostate capsule. I had the robotic-assisted laparoscopic prostatectomy in Houston with a doctor who has done several hundred of these. I never had surgery before in my life, and was expecting to either die or have excruciating pain. Obviously, the first didn't happen, and, to my surprise, neither did the second.
I, too, am sorry you two have to go through this, but you sound like you are doing all the right things. I am a worrier, too. However, I found that these message boards are a great comfort and a wealth of information. This one is not the one I started with, but the folks here are so compassionate and supportive that I am sorry I didn't know about it sooner. But, most of these are like that, because we all know what it's like to be scared about this, and want to share when we have found something that might help someone else.
Another informative site that you might check, the one that I started with, is the one associated with msnbc.com. One of their staff writers who lives in the Seattle area found himself with PCa and wrote a series about it for all to share. It is called Low Blow, and you can find it by going to the msnbc.com main web page and scrolling down to the ad about Low Blow on the right side of the screen. Besides his story, which parallels ours, there is a message board where people are sharing info just like here. I got some good advice there, as well.
To put in my two cents about a shopping list, there are two musts. One is the Neosporin that you have already read about (I used the Walgreen's store brand triple antibiotic ointment-not the cream, but the clear greasy stuff without the anesthetic). This you apply to the opening of the penis when you have the catheter in, and because it is antibiotic, you can do the following: while you are sitting on the toilet, you can smear the stuff up and down the area of the catheter tube where it enters the penis, then gently(!!!) slide the head of the penis over the greased area. This seemed to make the thing more comfortable to wear.
The other must is a nylon cloth strap with a velcro closure and a little velcro loop thing that goes around the area on the catheter that is the closest to the thigh. You get the catheter into a comfortable position, and then wrap the little loop around it and snug that up, and then wrap the big part of the strap around the thigh with plenty of slack in the catheter tubing. This provides strain relief so the catheter tube doesn't accidentally pull too hard if you are messing with the bags or get in a wrong position with whole assembly. Being that the thing is nylon, it can get wet when you get in the shower and it will dry quickly. It is so much handier and less hassle than trying to tape the catheter tube to your leg and then pulling hair to get the tape off or fighting to get off the tape adhesive that sticks to everything. If they don't offer this strap to you in the hospital, then try to find one at a medical supply store or maybe make one with some velcro. I had to have the catheter for 4 weeks so this little gem was well worth it, but some of the others here only had it for a week or so. Even at that, after I accidentally pulled a little too hard on the tubing when I was trying to change from the leg bag to the overnight bag, I saw stars and didn't want that to happen again. By the way, the changing from the leg bag to the overnight bag was just a big drag for me, and the little bag doesn't hold very much, so I just used the big bag all the time. I had some baggy trousers that accommodated the thing when I had to go out to walk or go to my doctor, but to each his own.
Another couple of things. I think one should have some disposable incontinence full undershorts. I wore them for a while or alternated with jockey shorts with the male guards in them, even when I had the catheter in. I noticed a lot of leaking of urine around the catheter, maybe more than after the cath was removed. This can happen when you stand up, cough, sneeze, or pass gas. It definitely will happen when one has a bowel movement. Speaking of that, walk, drink prune juice, do whatever you usually do to stay "regular" and then some. Constipation and early recovery from this are not very compatible, as I learned (too much info?).
I got one of those vinyl blow up ring cushions (they used to be red rubber, but now they are blue vinyl at Walgreen's-hmm,the second time I mentioned them-I don't have stock in them; they are just a few blocks from the house). I found that to be more comfortable than a regular pillow to sit on. You don't fully inflate it, or it will be hard and bouncy. You can play around with the amount of inflation if you get one, and get the most comfortable level. It works as a good shock absorber, as I also found this to be the most comfortable thing to be sitting on in a car when it goes over bumps or potholes.
Another thing I would suggest is to buy or check out from the library Dr. Peter Scardino's book, I think it's called The Prostate Book. It gives some of the same but some different information that Dr. Walsh's book. Being a big worrier, I got a lot of comfort and hope from the Scardino book. He is a major researcher in PCa, and invented a bunch of stuff about the surgery, just like Dr. Walsh. He used to be in Houston, but is now at Memorial-Sloan-Kettering in New York City.
These are just a few things I remember were key. If I think of some more, I'll post them. All the best, and we'll all be praying for you and watching for your good news post.