Here we are night before RC

HOW did you know I was a GK ? I love the people on this site. They are so much more in tune with themselves.
I DO have one more thought:

YOU HAVE EVERY RIGHT; No, an obligation; To be a little Selfish. I put aside many of my, supposed, PRESSING OBLIGATIONS so I could focus on the important things; like family, and ME! We didn't want to be too selfish, but Just a little

I almost stopped coming to this site as my life started to return to normal. But I was pulled back in by a post that made me think. Someone mentioned that after a while people DO move on. I was drawn in by the new, and VERY SCARED members who are confronting this monster. If there is anything to my rambling, VERY non technical stories and anechdotes that can be helpful or humorous, maybe I can be of service. It got me through.

Great post GK.

Before my surgery I was strictly business and too into my thing to worry that much about others. That was a mistake. I put together all of our papers, did power of attorney's, told her who to contact about what if I didn't make it, etc. Like I said, strictly business. I looked at my situation in a bit of a detached way because that's how I deal with things. I should have thought more about how she and our grown kids process things. 20/20 hindsight....

After my surgery, my wife and I also became much closer. She was there constantly and since she's a nurse she helped take care of me too. She also made sure the staff in the hospital were doing their jobs (but in a good way).

Mike

I don't know if I should be answering this post (the patient ) or my wife (the worried care giver) or not. I can't help remembering the days before the surgery. My wife and I became so much closer. We talked about everything; our plans for the future, how much we loved each other, how much closer this awful disease had made us become, and how we were going to BEAT the crap out of this disease TOGETHER.
I know we had terrable fears. My wife wanted to share her fears. I did not want a single negative thought to be spoken of shared. I was damn well going to beat this and any talk of failure was verbotten. Looking back on this, I could have been a little more compassionate, but frankly, I was scared to death! My wife was also scared and felt trapped trying to keep it all inside.
I know this sounds really strange but I had the easy part! I went to sleep and she worried for 11 hours. Thank god for the three girls and a NEW friend with a BIG personality who barged into the waiting room and stayed all day. This woman told me the day before surgery that she didn't care about me, she only cared for my family....This was said in jest, but she knew where her priorities were. She was there for the hardest part; the waiting.
I have some advice (I am no expert)
Trust your doctors
Trust the Anthesialogist
Trust your gut, it will tell you what is right
Be Positive...Be Positive.. Be Positive
Trust your family..and friends...Let them in; you will feel better and they will feel better. They show their concern in different ways.
Rely on the nursing staff. Today they spend so much time doing paperwork, that some actual caregiving is a blessing.
Don't expect much patient activity the next day. Morphine is a funny drug. My wife says I was never more entertaining.
Don't allow yourself(the patient)or your spouse to lose their dignity. This is very difficult, with all the tubes and bags and such. As quickly as possible get some decent clothes on. Cover the drain bags. Comb their hair. I know I felt more human in this inhuman environment, when I felt as though I looked somewhat normal.
And last. For the caregiver, realise that some very good things can come out of this. You both will learn what is really important in life. The love you have for each other will grow tenfold if you both open up to each other and really talk. Those material things and petty differences you had before surgery are no longer important at all. And for you, the patient, realize that this is a team effort. It is not all about you. It is all about you both. Talk about it, cry about it and express you fears. Those fears will fall away when you both realize they are very similar, and when you express them, they can be minimised to nothing.
I know this is a rambling bunch of thoughts. But I remember always having a crushing number of unattached thoughts roiling through my head during this time.
By the way, even with this open communication, my wife had a meltdown (just a quickie) about 3 months after the surgery as the reality of what we had been through had finally sunk in. She is the best! 30 years of marriage and it gets better every day.
I hope this helps somewhat. It will give you smething to read. My prayers and thoughts are with you. You have come to the right place for support. The people on this site know what they are talking about(unlike me)and they care deeply(like me)about you and your husband.
I wish you the absolute best.

Wow - want to include you in my prayers - it's key to move as soon as possible; think the hospital had me up two days later...will find it tough to move without discomfort in the pelvic area but it must be done. Would suggest when you come home from hospital, have a pillow ready...will want to protect that area from seat belt...you might even have a small pillow for the tush to make the ride home easier and more comfy.

Once home...Gator will likely find it tough to rest comfortably in any position but on his back for first few weeks...it was a challenge for me just to get down into the bed and back up...good to have table nearby with some basic supplies...and if you have something to anchor onto like a bed rail etc. when he gets in and out of bed, all the better. There is so much more I would like to say here but I'm at work and besides, not all are interested in what we Indy pouchers experience...so suggest you to see my personal website if you have time...www.bladdercancerwarrior.com I have information specific to Indy pouch and continually updating it...hopefully by the time you need it I will have the type of information on there that will be beneficial to Gator. The first few months were a real learning curve for me but at the same time, I felt the procedure of caring for an Indy Pouch and having to cath...very natural for me...and I have done very well with this diversion. I hope Gator will be as fortunate. Hugs, Melodie

Hope it all goes/went well! Fire away with the questions whenever they come up.

Just in case you do check before he comes home, make sure that he gets up and walks and walks and walks as soon as possible. It can help to prevent problems with intestines after such a long time under anesthesia (and especially because of the resection).



Mike

As you can see we have gone from new person to one of the home team. I don't post often but I do read alot.I am sure when we get home I will be on here with ???s. Thank you for this helpfull site. I read alot of post to Gator because he doesn't have patience to to find answers to his ??s. I on the other hand like to read and research I suppose it makes me fill like I am helping him. We are going in the morning to get RC,opted for indiana pouch, scared to death but finally filling like we are getting this resolved. I f anyone has tips for when we get home from hospital I would be happy to hear them. Will not be back on til after hospital stay But this will be one of the first things I do. Thank you in advance for your good thoughts and prayers. You have all been in ours.