Hello I am new here...

Dear Holly,

I was very moved to read that you have a desire to contribute somehow to this site/forum and to meet others in person. I've met a whole bunch of folks from WebCafe over the years, and made some really great friends. A few have come here to Amsterdam and others I've met in NJ when I visit my sister. And I have friendships going back to '98, when my sister was dxed with blc.

After you are on the road to healing and out the other side of this surgery, you can certainly help by sharing your hard earned wisdom and experiences here on the forum.

In the meantime I will be saying a prayer for your son, as we all will.

Take good care,
Wendy

Hi Patricia

The Dr has not yet revealed the details of treatment beyond the neobladder/ostomy procedure other than telling me after we will know the node status and have clear info on my removed bladder. He has assured me that we are proceeding to obtain "best survival rates" . He had another Dr in the appt last time wh owas reviewing the shoulder bone scans and he has not altered the scheduled surgery so I believe they feel it is ok.
 The plan is to do the neobladder, however, the back up planis for the ostomy not the pouch. I am ok with that. AFter all, they removed 1 1/2 ft of intestines 20years ago when I had gangreen from a strangulating hernia. Plus we all know they have to be sure the usual is ok for the neobladder too.
  As far as follow up care....Swedish American Hospitol here has a DR that is prepared to follow and manage adjuvant chemo here as specified by Mayos. They have a good cancer center for a local facility - just lacked the expertise to do the surgery needed. And the nurses here - theyare great. Iam not afraid on that count. My check ups for the first 2 years - I want those done at Mayos tho.
  I asked about new neobladder procedures - and was not able to get any specifics. All I was told is that there are advances being made for treatments, just nothing available now.
  All in all friends, I feel armed and as ready as I can be to beat this beast. The arsenal has been assembled and is about to be unleashed against this disease. It is a war I will win
   Slightly off topic.....My son is 23, in the National Guards. He already served 18 monthes active in Iraq....He told me just yesterday that it is emminent he is going back for a second tour. He is airborne infantry special ops. Please put him inyour prayers. It will be a challenge getting thru the cancer by itself, but this on top of it...I only get 24 hours a day to pray ! I do appreciate the help !!
   Well, today we are getting some things done around here while I am somewhat able as we go to Mayos on Monday morning! Love to all, MZ

Holly....just curious as different institutions do things differently. What is the doctors thought on chemo? What were his thoughts on the shoulder ( which could absolutely be benign) and the spot on the lung? I also had a spot on my lung but the big guys at the cancer centers all recognized it as an old scar....whilst the local yokels were spreading gloom and doom.
I'm so happy you're content with your new doctors......while i did the Indiana Pouch instead of the neo-bladder...its still a long haul afterwards. I went home with at least 2 J-tubes and one other tube and i may have even forgotten a few!! See if the docs up at Mayo can recommend someone to do follow up care closer to you . You never know what might come up. Your social worker will see that a nurse visits you at least twice a week in the beginning. Its just nice to know where the docs are and the nurses are that deal with this once you're home.
And do me a favor if you can....i read on their site that they are either experimenting or in trials with a bladder not done the traditional way of using the intestine. I've written them but to date no response.
My best you to you and i've no doubt you will be a success story.........Pat

Hi
Your so right there is life after this its different its not so certain and taken for granted and in loads of ways that makes it better.
I find everything is more intense I cry a lot more but also laugh alot more and just appreciate good times so much more.I only had my surgery in August and finished chemo in January but I am going skiing on Sunday for a week.Whilst I know I wont be up to whizzing down black runs from 8-5 I will have a great time and I never like the scarey runs anyway and theres always next year.
Just look after your self take control of whats happening and fight to stay positive if you read my story so far you will see I have had some really awful times and reading it back now can have me in tears it brings back how desperate I felt at the time.But a few short months on I am out the other side and whilst its still scarey its my life.
I am so glad you switched carers I was really scared for you.
Love Claire

Hi MZ: I too will be thinking of you on the 13th and for the days following. Please let us know as soon as you can how you are doing. Take care,
Sandra

Mz
You're absoloutely right about there being life beyond this. And a good life too. That's what I've found and many people here as you know. You will be the same person after the surgery. I'll be thinking of you on the 13th. All the best to you. And Joe, what a trooper you are!

Tim