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

16 years 5 months ago #8707 by dadhasbc
You are all such wonderful people!! Thank you so much for your kind words and for the personal messages I have received. I am offering my support as much as I can and offering to come and do the things that I think she will have a very tough time doing for him.

I guess in a way it is like the stages of grief when you are dealing with cancer...the denial, guilt, anger and so on. After reading your posts, I see that these are quite normal feelings.

On a good note, my dad had a great day yesterday and they FINALLY started to feed him. He had terrible gas pains for a couple of days, and then suddenly felt better the next day as the gas passed. Boy, he was uncomfortable and looked like he was in labour (because of the belly distension and the cramping...looked like contractions!) But, now that things are moving he is a lot more comfortable. He's started asking to get out of bed and walk around, so I think that is a good sign. He just called my Mom, the doctor was in and is thinking of discharging him on Friday...sooner than expected. I have mixed emotions about this, I worry they are sending him out too soon, but I guess getting him out will do a lot for his morale.

Anyway, once again, I have to say that this is the best forum I could have found...people who really know what is going on, from both sides, its awesome!! I will definitely keep you updated on my dad's condition and maybe we will be able to help those of you who are about to go through this surgery.

Thanks again, a

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16 years 5 months ago #8702 by momof4
I agree that the emotions your mom is going through are totally normal. I went from being an emotion wreck, to a raving lunatic, (all within the course of an hour). I too was mad at my husband for getting cancer. No it doesn't make sense when you look at it from any other perspective than the partners. We are getting robbed. It is really like that. Someone (the Dr.s) are telling you that due to this disease everything in your life is going to change, your partner may die, you will be alone, etc...and all of the things that involves, financially, as a parent, as a partner, etc...It can blow you out of the water. Then there is the whole caregiver issue to deal with...It is not easy to watch someone you love deteriorate. Especially if your partner was always "The Strong One", "The one who took care of everything". Looking at the fact that you may be facing all of lifes challenges alone possibly for the first time in your life at times is unbearable. It would be easier sometimes to be the one with cancer than to deal with the "Wake" that cancer causes.

Now note that the above does not contain totally rational thought. But all of the above runs through your head at some point or another. It is OK. Know that it is OK. Then pick yourself up, and tell you family you love them, have a cup of coffee and start your day. It is OK to wallow alittle. Just don't let it mess up a whole day. Time is too precious

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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16 years 5 months ago #8701 by Mike
My wife is an LPN and from the beginning to the end she took me to all my tests, was with me everytime I had chemo and respected every decision I made and without her I would of been a lost buck. Now sometimes I felt as though I could of drove myself but she insisted and then there were the days I was so weak there was no way I could of drove and this just bothered me emotionally because I was an ex trucker. Also my wife being an LPN she has a good medical background and when I had my surgery and Dr. Malkowicz said he saw problems doing the Neobladder when I really came to and they finally got me stabalized because I had problems breathing right she was the one that told me he had to do the Indiana Pouch she was just happy I was still here. We talked a little bit about our social and sex life but right now all that is on the back burner as I am still regaining my strength. My wife was a real angel and with her medical background as a nurse she has seen feeding tubes, ventilators, the whole nine yards and things I wish she never told me. So any body blemishes I inherited going through this surgery she could care we have eachother and with the grace of God I am now cancer free. I really think your Dad is going to be just fine and since they feel he needs nomore chemo this is wonderful news. And I am happy you and your Mom are seeing eye to eye now this disease just makes people act differently and everyones nerves are different also. What one person may be able to take another can't and when someone you really love is ill this kind if stuff can happen but most of us are able to work through this. Joe ;)

***Pat said some magic words there treasure your moments keep it in perspective because with all of us you never know what lies around the corner.

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16 years 5 months ago #8695 by mikeg
hi daughter of dad with bc. my husband has bc and began his third cycle of chemo today and his rc is scheduled for november 5th. i am having lots and lots of emotions, kind of like your mom. my husband is the epitome of mr. clean living - never smoked a cigarette in his life, eats all his veggies, snacks on fruit, etc. and he got bc. i am not angry with him for getting it, but i do feel some anger about the fact that he had really bad pain during urination in 2001, went for a cysto, it was clear, and he was told to come back in a year, and never went back again. he just hated that cysto and never told me he was supposed to go back to the urologist. and anyway, it's his responsiblity, not mine. he's a big boy. but believe me, he wishes he could take it back. and like zachary said - you can't live for yesterday. it's done, and now we have to deal with it. our social life has been severely curtailed. we're basically having to write off an entire year of our lives with this disease and all its aftermath. i think the reason your mom is reacting the way she is is because she can't face her fears - of being widowed and alone, for starters. it's much easier to be angry than to be sad and scared. it seems to hurt less. your life won't change nearly as much as your mother's if something happens to your dad. anyway, that's just my opinion. your mom will have to work through all her emotions and it's a long process - similar to the grief process. she has to go thru all the steps. i am reading your entries very closely since i know i'll be in your shoes in a month. keep us all posted - it's really helpful to write these entries, as well as to read them. the support from all the people here on this forum is so valuable.

eileen, michael's wife

Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23

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16 years 5 months ago #8686 by Patricia
The stool softener is docusate or brand name Colace.
Dulcolax(confusing because so many brands sound or are spelled similar) is a stimulant or laxative as Karen said.
Pericolace has been discontinued because the product contained casanthranol..a stimulant or laxative.
Pat

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16 years 5 months ago #8685 by momof4
Please note that I changed my previous post. I originally put "dulcolax" I meant Colace. There is a big difference here. One is a laxative, the other is a stool softener. Obviously the stool softener is much easier on the system, which I am sure would be better after the intestines have been cut, and moved around....

Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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