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11 years 9 months ago #19983 by Melodie
Cynthia,

Good job of covering a subject that definitely needs exploration and discussion. I agree with Pat's advice, "Don't go there"! Although I loved horror movies when I was a kid, I no longer do, so I don't view them...I am afraid of what I might see and then be left with lingering fear. When I first began to view the webcafe in April 2007 I located someone's story about their RC...the author had attempted to put humor in her story and so I laughed very hard...she did a great job, but at the same time, the story terrified me and I could not go back and read it for fear that I would change my mind about getting an RC. Fear will always be a part of cancer but when we can keep it at a distance, we should try to do so. It can rob us of the energy and time we have right now, here, today. Whatever time I do have left, I want to make the most of it, to be the best I can be, and to make a positive difference in the time I remain here.

I have been very blessed to have had a good recovery and just last week celebrated my first year of being cancer free after my RC last July. I recognize that others are not doing so well and my heart goes out to them...I don't always know what to say except that "I do care" and they are always remembered in my prayers. I will always feel the need and desire to continue offering help to others in the way of support and encouragement, and when I can, even education. I am sure many others here feel the same as it is the only way we will ever be able to make a real difference and get the recognition and notice that is badly needed for Bladder Cancer. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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11 years 9 months ago - 11 years 9 months ago #19946 by momof4
There are chatrooms available for all...Just set up a time to meet.

When you enter the chatroom, on the right corner of the page you will see the words: "Chatrooms" click on that link and there are chat rooms for everyone...Just schedule a time to meet and chat away...

I think at the moment that METs is a very busy section of the forum...very unfortunate since alot of the people that are new to METs used to belong to the invasive section...

I remember well on the Webcafe that we had a run of surgeries for awhile too...It seemed like every post was someone looking for information about RC...Or having the surgery

It is my hope that the METs section is not that popular, that would mean that more people are surviving this awful disease...and not progressing. No one feels special because they are there that is for sure...They would rather be anywhere else on the site...

Life and Death is a real issue when talking about any cancer, fortunately some will never progress, and they will move on to a new normal with their lives. Unfortunately life after finding out you have METs is different than the initial cancer diagnosis...The issues are bigger, and the feelings stronger...The future?

There is a place for everyone here...Why not enjoy it instead of bringing things here that are petty, and totally irrelevant to advocacy, help, and support....no matter what the stage...there are people here that have been there and have something to offer...

This site is wonderful, helpful, supportive, and a lot of fun when you create friendships with others on the journey...lets live in peace here...

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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11 years 10 months ago #19942 by Roxanne
Hi everyone,

I know that as I first natigated this site, I only ventured into the topics that were personally connected to my situation ... my sister was diagnosed with invasive bladder cancer a few months ago. This site deals with many different levels of blc and it was very nice to have the option to enter only those topics that I needed to and not to have to weed through other topics.

It wasn't until my sister's recent surgery in which her diagnosis changed to metatastic bladder cancer that I even ventured into that topic.

So, I, for one, very much appreciate having the options to explore the topics at my leisure.

And, I say again, thanks SO much for having such an informative forum available for those who have been afflicted with this ... survivors and caregivers alike.

God bless to all ... Roxanne

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11 years 10 months ago #19928 by tate
Hi Cynthia,

I just wanted to say I am thankful to have you and this website. I choose which topics I go to. However, I try to keep up with the wonderful people I met through the bc web cafe even if they are in the mets area because some have really helped me and I want to know how they are. Yes, it is hard sometimes because I think of these folks as family/friends. But, I want to show support like they have towards me or just like I would to my family/friends during their times of need. Even if it is a prayer sent their way or a hello.


I am so sorry that some people have had some discomfort because I know what a Godsend this group of people has been for me. My real family and friends know that I think of you as part of my family/circle and how many of you help calmed my fears.

I pray that those that have become discouraged will try to stick to their area (i.e. non-invasive, newly dx, etc.)and venture to other groups cautiously.

God bless this forum and each of you!

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11 years 10 months ago - 11 years 10 months ago #19923 by Gene Beane
Cynthia,
Yes , it is all so wonderful, everyone coming together to share,,,
soon the site will have more for INVASIVE, INVASIVE DISCUSSION GROUP, INVASIVE CHAT, AND NON INVASIVE AS THEY TO DON'T WANT TO ENTER THE INVASIVE GROUP AND FACE AN R/C..THE SURGERY IS SCARY FOR SOME AND MORE THAN THAT FOR OTHERS..Gene and I have helped many get to and thru the surgery, and we feel good about helping others.
Look forward to new sections for all groups!! I guess this is as good as time as any, how about a discussion group for invasive, and chats as well,to discuss what we fear about surgery, special things. Gene would be glad to make the first post, it may reach others and help reduce there upmost fears about surgery!!! Then we can do chats as well..
Today Gene had a chat with Peter, and grandpa donut, he is about to have an outside bag,,,the three talked surgery, lightened his fears somewhat we hope,'
and planned a get together in Vegas in Oct., our prayers will be with you grandpadonut,,,and hope we will have the pleasure of meeting you in Oct. for sure. Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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11 years 10 months ago #19921 by bookwriter
Will and I have learned as much from this group as we did from the doctor - keep it up, Cynthia, it's extremely important, for all of us. Of course there's going to be problems, of course people are going to be frightened, this is an extremely serious issue and touches people's lives in every way. You are heoric for doing it, don't stop.

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