About posting concerns

15 years 8 months ago #19920 by mznoregrets
Replied by mznoregrets on topic About posting concerns
Hi Everyone and Cynthia,

You know I have 2 cents to throw in,too....

This website has been designed with all of us in mind. There is information on every stage and grade and addresses much of the even rare features of bladder cancer. Every stage also has top notch information for treatments and protocols and survival sheets. Any information you can't find here can be found by other kind souls willing to research for you. This website has it all if you or someone you love is dealing with bladder cancer period.

This website is set up to be very user friendly. I say that confidently as one who is technologically challenged. There are sections for every stage of bladder cancer or according to being male or female. We have blogs, forums, email and chat options for survivors and caregivers. You can be active on any section or anonymously lurk or even just glean information. And you can even chose to do it daily, once a week, just while you are in treatment, or for the rest of your life. And it is free :)

What we can't chose is what cancer we have.

I don't chose to read sections where I have no knowledge or experience to be helpful, like noninvasive or mens issues. I don't post in sections or threads where I don't feel I can be of help. My lack of reading or posting there is not indicative of my compassion for those in those sections. I feel for everyone facing any facet of bladder cancer - IT ALL STINKS!

Almost all active website users are aware of Cynthia setting up the mets discussion area last week. I don't believe it was created because mets is a more important or a bigger issue. I think it was done because that segment of bladder cancer is rapidly changing. It has different implications than other stages of bladder cancer and it can be disturbing if you don't live with mets. That is why I post there - I live with mets. Before that section was created - I could either openly post in the general mets section (and scare people), email in the dark with other mets survivors, or shut up and not connect with others like me. Cynthia's solution was purfect - mets can post and others can avoid the section completely. Thank you Cynthia!

In closing let me say this. It is very unfortunate there has been more than a few who have recently experienced progression. I pray that those with noninvasive never progress. (Please note I use the term noninvasive vs superficial - I think superficial is very misleading and invalidating) I think all stages and grades of bladder cancer have fears and needs and should be validated. I also think everyone afflicted with bladder cancer has a place on this website. We all have choices of how we help ourselves and the others who will be here soon. I for one am grateful for the website, Thanks Cynthia and Eddie, God Bless, Holly

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15 years 8 months ago #19919 by Cynthia
Replied by Cynthia on topic About posting concerns
Yes that is the point all blc survivors have issues. That is why this site is here it is for all of us. There will of course always be times that one category will be busier than another it will always ebb and flow. But all of us have tools here if you have issues post them, blog them, chat about them or email about them. That is how this will grow and remain a vital substance filled site.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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15 years 8 months ago #19918 by Webs
Replied by Webs on topic About posting concerns
Cynthia,
I feel the forum is set up very well. There is a section for everyone. I have a voice in women's, invasive, new, and chit chat. I choose to only respond there because those are the areas I have knowledge in. If something is going to scare me I don't read it. I also choose not to respond to posts I have no knowledge of. I am an adult and have self restraint.

Webs

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15 years 8 months ago #19915 by Patricia
Replied by Patricia on topic About posting concerns
Issues are still widespread....there is an Invasive Section which has always been there. The fact that many have graduated to a Met section is unfortunate but one that certainly needs to be addressed. Like i said Don't go there!
Pat

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15 years 8 months ago #19912 by Gene Beane
Replied by Gene Beane on topic About posting concerns
Cynthia,

I agree with MARGOT,,when first joining the forum the issues were widespread. Issues were evenly divided, recently its been more of a mets forum, maybe forgetting the concerns of those not there. We in Invasive are important, we have issues as well.
Ginger

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15 years 8 months ago #19908 by Patricia
Replied by Patricia on topic About posting concerns
Don't go there!!
I remember when i first got my diagnosis of blc..there was no forum just a storyboard. If you want to get really scared start researching on the internet.....there were times i was crying halfway through a paper and really wasn't sure what applied to me or what didn't. I had to come to grips with new terminology...god alful statistics which i didn't know which applied to me....now thats scary.
With the forum its set up to go into your own room...enter the others at your own risk. I knew and understood being newly diagnosed and i clearly understood invasive blc so there i stayed for a long time. I venture into other rooms occasionally but usually as an observer or to do research for someone.
All this stuff is scary no matter where you are..i think the forum is set up beautifully. Pat

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