Just a thought

Cynthia...thats amazing you got that up and running so quickly. I hope Holly and others in a similar situation now have a safe haven to go to and that some of the darkness that they wish to share with one another will also lift a burden of sorts...and let in a little light.
Thank you
Pat

Cynthia,

I am not saying the website is deficient or not enough for those of us dealing with mets. The website is acceptable - to chat, to email, research, just about everything. The problem I am experiencing is not a defective website or being dissapointed in its features.You are creating a very respectable site.

I am being extremely careful with my verbage here.......

I can post what I am feeling in the appropriate places. I can connect with others like me in those places. I have no issue with others seeing those posts. The problem is simply this....We have a problem posting what we need to because it is made a social well wishing thread. I simply asked it to be left exclusively for those of us with mets to deal with some emotional mets issues. I don't know why that is so hard for some to respect. It takes guts to post fears out there - others should respect that. I even asked nicely and explained why it inhibits our posting.

Everyday I read posts that are not where I am at...I send up prayers for all of them but it doesn't mean I should post on it. I could - but that would not always be the right thing to do.

Sorry if it seemed I was slamming the site or the speed at which you are doing fixes - that was not one iota of my intent. I admire your dedication and sacrifice to provide what you do. God Bless, Holly

Hello,

Living with mets is not easy...seems pathetic to also be dealing with a new primary - bone cancer. I wake up hoping the pain stays under control, that I atleast feel as good as yesterday. Praying I have enough time to finish what I need to - you know the mets are unpredictable and brutal in one way or another.

Posting at the forum should be connecting all survivors with what they need - information, support, kleenex, and prayers. A means to help one another through some of the darkest times some of us will ever face. I think some have found a measure of that here. I wish I could, too.

I have been posting about how those of us with mets can openly post a thread or two about what we are dealing with and for it to be respected as our safe place to cope. It won't make our cancers go away but it could help us get through our struggles supported and understood. With sadness I am realizing that it is too much to hope for - and I won't waste any more of my precious time begging. Me and my emotions are reduced to social fodder by some and I can't change it. Cancer may be kicking my arse but I can chose to not let it happen on the internet.

The information here is solid, and there are genuine folks here who do lots of good. If you are newly diagnosed, noninvasive, facing RC, chemo, or a caregiver - this is the place to be if you have bladder cancer. But if you have issues dealing with mets....they are working on it.

I am so emotionally spent from this thread that my family is fearful. I have been in tears and barely able to speak. The blatent disregaurd shown to me yesterday has indeed hurt. I spend enough time in pain and I can't do this anymore...atleast for now. I was hoping to ease some of my pain, I had no idea it could be so carelessly increased.

God Bless, Holly

PS Those who I email privaetly - please feel free to continue doing so. My friendship is still there.

Dear Forum Friends,

With all due respect we have to be very careful not to create borders keeping valuable caring support and information flowing freely.

This is my second home were I come to be open and honest and sometimes frank about my own personal situation. To also offer help and support whenever possible or just to say a few positive words of encouragement.

The categories we have available cover the basic spectrum of Bladder Cancer although I am sure this will grow as the site matures. We should not be afraid to enter any category and should have the freedom to add your voice to any subject.

I certainly do not want to be restricted from areas of this forum which can and have been helpful to me.

I have found a wealth of helpful information just by reading other forum members posts in any of the categories we have available.

Each and every one of us should feel safe to post respectful, relevant information, help or support with no comeuppance.

One solution for those whom feel a more private area would be beneficial is to have separate menus on the live-chat option.

Another could be to continue to send private messages and emails which I have also done when I have felt that I needed to express my emotions with no general feedback.

Leigh…..