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Dad 4 days post-op Neobladder...what to expect now?

12 years 5 months ago #8665 by jrod1220
Hi Everyone! This my first post. YIPPEE ::)

My father (74) had his RC on Aug 23rd. He did remarkably well and has continued to do well post-op. A few minor complications but nothing that was not expected. He spent 14 days in the hospital, the first 7 in intensive care for the care that he needed during those very critical few days.

Once he went home with several drainage tubes (I believe it was 3) he required the assistance of a home health nurse for the irrigations and the cleaning of the wound, etc. The first week at home is the most critical pertaining to this to prevent any infections or complications. There were specific procedures the doctor wanted the nurse to follow. We all learned how to perform the irrigations in the event of any problem, but in my opinion the skill of a nurse does not come close to what we (my mom and I) could even attempt. If your insurance will allow the home health nurse for a specific amount of visits, get it.......it is well worth it. Make sure you can contact the doctor should there be any questions or needs for consultation by the nurse.

If anyone has had any issues with constipation following the RC, even with stool softeners, fiber, mineral oils, etc. please advise. It has been 6 weeks since my dad had his surgery and he is still having problems in this category. This is his major complaint!

On the incontinence side.....he is doing very well during the day (99%)but during the night he is still getting up every 2 hours by the clock and having some leaks. This was described by the doctor to be normal for several months. He said the neobladder will continue to grow for about 1 year and this will improve the amount of liquid it can hold.

I hope I was able to help you with your question on "what to expect now". I would be happy to answer any questions you might have that I have already experienced. My dad has not been the best patient because his tolerance for pain or issues is very low, however, we are very grateful and appreciative that he is doing so well. Lord knows that he has made my mom nuts and tested her endurance and patience. She deserves the Medal of Honor.........Wife of The Year!!! He should be LUCKY to have someone like her by his side. ;D

Best Regards,

Jackie

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12 years 5 months ago #8636 by mznoregrets
Hi dadhasbc,

Thank goodness for your compassion and good common sense - hopefully Mom will get to that soon too. Cancer hurts everyone and sometimes coming to terms with it all is difficult. I have this situation in my prayers.
Before my RC I went to the baby department and bought some of the crib pads ( or maybe they are changing pads). They are apx 2x3 soft and waterproof. I would have one on the bed at night, but they were also convienent to put on the couch or a chair, too, for just in case. I was extremely nervous about "accidents" and felt better that the laundry was not any bigger a burden on those caring for me.
When it came to disposable undergarments - I dispised depends...they crinkled when I moved and I could swear the neighbors could hear I had them on! I bought pull ups in the kids aisle at the grocers. They come in sizing up to apx 130 pounds and they are quieter :) It mattered to me.
My heart goes out to you and your Dad. And your Mom.Maybe the hospitol or local American Cancer Society chapter can offer her a support group - they may be able to help. God Bless, Holly

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12 years 5 months ago #8628 by Mike
Since he had the RC dear they removed dads bladder but they also took his prostrate so that is gone nothing to get up in arms about. Sometimes when they take the bladder out when the Path report comes back they find the prostrate was cancerous also. I think if your dad went for bladder cancer more then likely it spread to his prostrate this isn't the first time I saw this. Well dadhasbc I am glad you are doing great and as far as the Neobladder I am of no help there are plenty here that can help with that, I ended up with the Indiana Pouch because my Dr bumped into some probs when he opened me up. Just be ready for somewhat of a longer recover period I'm 3 months post op and I'm still not perfect and I have been told it can take 6-8 months and for me I am actually starting to believe this. The main part for me is I am done the chemo had the RC and I am cancer free as of now. I have my 1st post op visit the beginning of November so I am getting checked every 3 months now. Good luck dadhasbc and there will be good days and bad days but the worst part is over. I have a question does the hospital he was at provide home health care because if they do they have supplies plus the hospital will give some b4 he leaves. But with home health they get you started and then they usually have a place in your are they can set you up with supplies. I took the home health and my wife is an LPN just because it would help her out. At least this happened for me coming out of the Univ of Penn in Phila. Peace, Joe ;)

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12 years 5 months ago #8627 by Zachary
Wow. This is not easy to respond to, because, like it or not, your father is going to need lots of care when he comes out of the hospital. I was 49 and in good shape when I had my RC last year, and I couldn't even get out of a chair or bed without help for a while.

Your dad is coming home with a catheter, which will stay in for a couple of weeks. Then he's going to have it removed and will begin training his bladder. This is not going to be a simple and immediate thing--his neobladder will only hold a few ounces of liquid when it's new, and the doctor will want him to drink lots and lots of fluids to help stretch it. On top of that, because your dad's new bladder is made from his intestines, he isn't going to have the same "gotta go" sensation he used to have.

If your mom isn't going to be helpful, then someone has to be, at least for a time. This challenging period won't last too long, but it can't be glossed over. It's frustrating and difficult.

But there's a light at the end of it. It will be over soon, your dad will be able to resume normal activities.

If your mom doesn't feel supportive, it's important that she at least *act* supportive. I can't stress this enough. I couldn't have made it without my wife's help; like I said, I couldn't get out of bed without help. I remember a poster that said: "There are two days in every week about which we should not worry, two days which should be kept free from fear and apprehension."

"One of these days is YESTERDAY, with its mistakes and cares, its faults and blunders, its aches and pains. Yesterday has passed forever beyond our control. All the money in the world cannot bring back yesterday. We cannot undo a single act we performed or erase a single word we said. Yesterday is gone."

"The other day we should not worry about is TOMORROW, with its possible adversities, its burdens, its large promise, and its poor performance. Tomorrow is also beyond our immediate control."

"This leaves only one day, TODAY. Anyone can fight the battles of just one day. It is only when you and I add the burdens of those two awful eternities - Yesterday and Tomorrow - that we break down."

"It is not the experience of Today that drives us mad, it is remorse and bitterness for something which happened yesterday and the dread of what tomorrow may bring. Let us therefore… Live this one full TODAY."


The "yesterday" part is important. Like Patricia said, many of us here never smoked a day in our lives, and we still got cancer. And even if it *did* cause your dad's cancer, unless he has a time machine his life right now still has to be dealt with.

I don't have to belabor this, you get the point. Your dad is fortunate to have you to look out for him.

Best wishes,

Zach

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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12 years 5 months ago #8626 by Patricia
Hi...these are the washable pads i bought for my father when he was in dementia and had severe incontinence...i actually bought the plaid ones as they didn't look like a pad ..i doubt that your fathers incontinence will be severe or last for a long time if he does his kegal exercises.
http://www.northshorecare.com/underpadswash1.html
I'm sorry your mom is having such a tough time with this....about half the people on this forum never smoked a day in their life and still got bladder cancer so go figure.
Pat

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12 years 5 months ago #8625 by dadhasbc
Thank you all for your kind words. To answer some of the questions:

The prostate cancer was identified on the path report only, we had no idea it was there, the urologist seemed to think it was separate from the bc. Considering he had prostatic biopsies in his last TURBT, I was surprised to hear this. I haven't seen the report, but it sounded like it was very early/low grade.

We live in Canada, my Dad's doctor suggested trying the BCG infusion rather than chemo as a starting point because he has had success with that...he did tell them however that most would start simply at the RC, so he gave them that choice as well.

My Dad is 62 years old, a Type II diabetic (not particularly well controlled), in thin body condition (he loses weight when stressed...wish I could!). Otherwise, cardiovascularly in good health and no other issues.

My mom is really worried about her role as caregiver, and if she will be able to do it effectively. She has a hard time putting an earring in, let alone flushing a catheter and changing bandages. She is worried about the incontinence and how they will deal with that. I didn't realize that she was so worried about things until just yesterday, and I wish we had talked about it before.

So, anyway, I would like to purchase supplies and whatnot for when he comes home, so she doesn't have to deal with that. I was looking at these incontinence pads for the bed on Ebay: Item Number 250172957472 (don't go buying them out from under me!!) , and would like to buy depends or serenity pads for him to have a stock at home. I see some are using the Depends pads and others the Serenity briefs...is there a big difference? Will he feel more comfortable with just a pad, or will the leaking be significant enough at first to just use the briefs? Perhaps I should just purchase a selection and let him decide what works best for him.

Zachary, thank you so much for the PM.. I will definitely call you (and perhaps my Dad when he gets home). I'm glad to hear that you are doing well following your surgery.

Thank you to everyone else that has replied, I'm glad to hear that there is a light at the end of the tunnel for this!!

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