Update on Michael's Radical Cystectomy

I completely agree! I used to feel the same way. Now I really watch what I write, wondering who is going to say what. Instead of having the freedom to write whatever I wanted. I as a caregiver I hoped to also share the frustration of this event in our families life. The up days and down days. Easy for others to judge when the scariest event in their life has past, whether it is for the time being or forever. Try walking a day in my shoes before you judge me. I have a total of 8 kids, one granddaugter, in-laws from hell, 8 brothers and sisters, a cat, a wonderful mother, and stepfather, my house in FL hasn't sold yet, I am liquidating all of our assets and I am only 39 that means I am starting over financially after years of saving, and MOST IMPORTANTLY HERE:

"The Love of my Life is Dying of Cancer!!!

Try to remember what it was like on those "Dark Days" ........everyone has had them.......if you act like you have the perfect anything here, then that my friends is DENIAL... NO ONE should be telling me what, how, or when to feel anything. I should be able to vent, ask a few questions, and not be judged. I am a fantastic caregiver, that forgets nothing, has a gentle hand & loving heart...That is as a mother, and a wife...I go about my daily route and methodically get everything done for everyone. I am not venting to my Wonderful Husband, I am not venting to my children who are mostly busy at school, and with their own lives, I don't take out my frustration on my two little ones...I go to church, I am a good Christian...So if I want to sit at my computer and rant, rave, scream, laugh, cry, ask a question, give some advise, whatever...isn't that what
this is about? I thought so, maybe I should just get a journal...

Someone asked on another blog about a bumper sticker or a T-Shirt for this, here's one I think that we can all agree on:

"BLADDER CANCER JUST PISSES ME OFF"!!

Good thoughts for Michael's surgery!!!
Karen

Eileen...every surgeon who does this has his own timetable for duration of surgery and you're very fortunate that you have one of the best. Some institutions use the NG tube after surgery (i consider it a medievil torture devise) and some have eliminated it altogether. Thats why on these forums we have to be kind of careful in saying "what to expect" because its just not the same with every doctor, every institution or every patient. We can reference our experience but we can't tell you yours. Your best source of information is of course your doctor on your surgery.
Each diversion is different in what you will or will not have coming out of you after surgery and dependent on how many nodes are removed some surgeons will place J tubes in the abdomen to collect any free fluids.....some do ..some don't.
I hope you're at ease with your pre-op visit and the information you received and that its a most successful surgery. I have no doubt that it will be.

We went to Hopkins today for Michael's pre-op visit. We had been given a lot of misinformation beforehand from various sources, so we felt very comforted by some of the things we learned today.

Firstly, we had originally been told by a different surgeon than the one we ultimately chose that the surgery would take 7-11 hours. Turns out it only takes 3 hours at Hopkins, possibly 4 since my husband is also going to have a minor hernia repaired while they're working on him. Secondly, he will not wake up with a tube down his nose and throat after surgery. And lastly, he will not be coming home with any drainage tubes - just a catheter.

The surgeon's nurses sat down with us for about 30 minutes and explained everything to us and answered all our questions. Now we just have to wait for the big day.

I do have one thing to say about some of the comments that have been posted on this forum. It's not helpful when people criticize others for voicing some of their frustrations or worries. We are all trying to do the best we can, caregivers and patients alike. Being judged harshly when we are not clones of Mother Teresa 24/7 is not helpful. I thought this forum was a place where we could comfortably voice our concerns and look for a little bit of understanding and support. Now I feel quite hesitant to say anything other than the bare facts.

Eileen