Lustron,
If you can arrange for somebody to stay with you the first couple of days home, that would be a really good idea.
After the surgery, walk, walk, walk, walk, walk.
Guess what? Walking will seem like an impossible idea after surgery and you will not want to. You must! Also, chew gum. You can't swallow it but chewing gum sends signals to the digestive system and has been shown to help wake the intestines up after surgery.
You will have drains and tubes and likely staples up your midsection from your pubic area up past your belly button.
You will have PCA (pain med machine that you push the button when you need more). While it is important to keep on top of the pain, do not try to be completely pain free all the time. The pain meds tend to slow the wakening of the intestines. Trust me! You want those suckers to wake up. The sooner they do, the sooner you start feeling better and the sooner you get out of the hospital. If you can, get someone to come visit you who will get you up and walking when you don't want to. This should be a good friend because he/she will need to still be your friend after you cuss them out for trying to get you to walk!
Do not just try to do this yourself if nobody is there. Call for a nurse to walk with you. You will be shaky and you may want to just walk in place next to the bed the first time or two but you should be supervised. Falling over with all these tubes and things would NOT be a good thing.
Post surgery, don't pick up anything heavier than a milkshake. They will tell you when you get discharged from the hospital about restrictions. Take them seriously. I wound up with a couple of follow up surgeries to repair multiple incisional hernias because I lifted too much too soon.
That link that Pat posted has a lot of good detailed information so read that through a few times, print it out and read it again before and after surgery.
When I woke up from the surgery I had three tubes going through my penis. SURPRISE! I expected just a catheter. Two of them were small (like fish tank tubing) and they went through the neobladder into the ureters so the urine could bypass the new neobladder for a bit. When they take those out, grit your teeth and cross your eyes. It doesn't help but it amuses the doctor. It didn't really hurt much but it did feel weird when they took those little ones out.
Ask you doctor about an epidural. Do this well in advance of the surgery. It needs to be preplanned with the anesthesiologist. Sometimes they will do those for the surgery and it cuts down on the pain meds they need to give you and the intestines can wake up faster. Why am I so obsessed about intestines waking up??? Well, mine didn't for quite a while and went through some days of hell and was in the hospital for 12 days. I was going for xrays and scans and had to get fed that TPN stuff through an IV for a long time. That's why I tend to harp on that stuff. It's worth asking your surgeon's opinion on the epidural though.
Oh...one fairly common side effect for men is that drainage can wind up going into your scrotum. For some reason--maybe the doctors and nurses just don't like saying the word 'scrotum', nobody tells you this. Then a day or two after surgery you notice that your scrotum could be mistaken for a regulation NFL football. That's pretty darn freaky and pain meds can make you imagine all sorts of things are going to happen (like explosions). What you need to do if you notice this is put a pillow down there to prop up the area so the drainage can go back into an area of the body that isn't so embarrassing to have full of fluid. Oh yeah...don't be checking it every five minutes...that would just be weird.
Wean off pain meds as soon as you can. Ask the nurses what makes sense regarding timeline. You don't want to be a hero and have major pain, but you don't want to stay on that stuff too long either. Narcotics like that are tricky and when you start to reduce them, they trick you by making you think you hurt more than you really do. Something with the addiction triggers in the brain. Don't be fooled. I'm not kidding about this. It makes your body MORE sensitive to pain when you reduce/stop the pain meds.
Also, it is possible you will feel pretty darn good the day after. Well the stuff they used to numb your insides may not have worn off by that time. Don't be surprised if day 2 is way worse than day one. This is not always the case but it is common. Doesn't mean you're going downhill or have complications. It's the nature of the beast.
Ask questions of the doc. Nurses at top bladder cancer hospitals are usually fantastic. They know this stuff inside out and upside down and they can help you. They can explain the stages you will be going through to heal.
Sometimes, right after surgery, people are in ICU for a bit before going to a regular room. Not always, but sometimes. Don't worry if you wake up there. Doesn't mean bad things.
Normal time in the hospital is about 5-7 days if there are no significant complications. Some have gotten out even sooner.
I have to stop now before I get harassed about having to include a table of contents and chapter headings in my response.
All the best!
Mike
