Once chemo starts, take it day to day. Be ready to change some of your eating habits, things I used to enjoy before chemo I avoid now. Energy levels will change day to day also. Get important stuff done on the days you have energy, on the down days, relax and reenergize. Something your chemo doc will bring up is to stay away from groups of people and sick people. I caught hell every week as school was starting for the kids and all the associated activities and a local festival I had promised the kids we wouldn’t miss. You will have the energy, just be careful when you go out.
As far as surgery, gather all the information you can and study as you have the time right now. As you get closer to surgery, start talking to your surgeon and what your thoughts are concerning diversions and see what insights they may have concerning you. The link that Mike posted "to neo or not to neo" has more insight that most doctors can cover.
Keep your patience focused on kicking the cancer out to the curb and not letting it back in the house!
5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...
Sorry I just had a chance to check in. My grandson was lead in 2 plays this weekend! He was amazing, I have to say!
After the surgery, there is a training period for the new pouch. One has to cath every 2-3 hours around the clock. And yes it was not fun. On top of that during this training period I was also receiving chemotherapy. In looking back I often wonder how I made it....also how my husband made it! He got up with me every time. He could not believe the effects of sleep deprivation until this experience. I was just so weak so he got up to help me through it.
But now I cath on average every 4-5 hours. That is around the clock so I do set my alarm once during the night. Pat, who is also on the forum and has an 'Indy' - only caths 4 times a day. I do drink a lot of liquids so I just don't see me going all night without cathing like she is able to do.
As far as sleeping - I'm a back sleeper also. But one should ultimately be able to sleep in any position.
Ah yes, public cathing. That has taken me longer to adjust to. As a woman, I am so self conscious about my feet 'facing the wrong' way in the stall. The part I like best though is not having to worry about sitting on the seat.
AJ, this is a process - one takes steps. I remember cathing on a plane for the first time. How liberating that was! I use to have issues with plane bathrooms when I could go 'normally'. This is a clean procedure not a sterile one. However, I am extremely selective when I cath outside of the home - particularly with cleanliness.
And when I'm out I cath into the commode (just like the 'boys'). No problem. At home I use a urinal because I have gotten into the habit of keeping track of my 'output'. But there would be no other reason for you not to cath into the commode.
Please ask any question you might have. Nothing is silly or sacred. We all adjust, I promise you. And we'll be here for you.
SO SO SO HAPPY to hear that your husband has opted for surgery! Great job! Congratulations!!!
With a neobladder, yes he will pee from his penis. It is a bladder made out of a segment of intestine and then hooked up to all the original plumbing (ureters and urethra).
Usually the next choice after neobladder (for men) is Indiana Pouch (usually first choice option for women). That is where they use a segment of intestine to create a pouch and then make a stoma (often hidden in the belly button) and one uses a catheter to empty the pouch as needed.
The next choice (all personal preference and some people make this the first choice) is the ileal conduit. The ureters are connected to a stoma. The stoma usually exits the body on the side and the person would use what's called an ostomy bag that adheres to the skin. There is no internal storage of urine with this option and the ureters just drain through the stoma and into the bag. This is the easiest of the surgeries because there isn't all the reconstruction of a bladder/pouch.
Don't apologize for not knowing! Nobody knows this stuff until it happens to us. Then we learn a LOT, very fast.
Here is a link from Cleveland Clinic that talks about the different diversions and has very helpful information for you and your husband.
My husband will opt for a neo bladder and I'd like to know what are the pitfalls, possible infections, etc. Also, just to clarify (pardon my ignorance), he will be able to urinate out of his penis, right?
And what is Illeal? I've never heard of this procedure. Is it the next best thing if the neo bladder surgery doesn't work?
9 years 9 months ago - 9 years 9 months ago#35983by mmc
A couple of years ago, I also had to make the decision about what diversion I would prefer.
I posted the question and got a lot of great responses that may also be of interest to you. Some people posted quite shortly after their surgery so they hadn't quite gotten the continence thing down, but all of them since have.
Do you remember if you had problems sleeping after the Indiana Pouch was installed. Did you need to set an alarm clock to cath or did you just wake up with a bloated feeling. I sleep on my back and my sides, do you think that might be a problem at all? How do you deal with public cathing. Forgive the ingnorance but do you cath directly into the commode or into a bag that you empty