Just a thought

15 years 8 months ago #19504 by Cynthia
Replied by Cynthia on topic Just a thought
Holly,

We are a very mixed community most will never have to deal with many of the things that a few will. And yes if you are non invasive and you are reading what is reality for some; it is scary, but if you are reading a thread posted in Metastatic you go in knowing what the subject matter will be. That is why there are categories we are a diverse community with differing paths. As you and I discussed you should never hesitate to post what is going on with you. In my own writings I have often worried if I have been too honest but with time I have came to realize that we are dealing with reality here and being open is one of the greatest gifts we can give each other.

I will spend the week getting the groups sorted out there was a problem with the transfer of the forum and the connection to them. But they will offer a way to post to a forum that will only be viewable to group members. I think that this should offer a perfect place to share with others that know exactly where you are coming from without scaring anyone. My only worry is that some will use that feature instead of the normal forum and deprive some of reading what could be affirming words.

I would suggest blogging as a way to journal what is going on going on at a deep personal level. They are filed by what they called Tags so that everyone knows what the subject matter is.

As time goes on we will be doing upgrades and looking at what works and does not. Know that your concerns are being heard and that when changes are made that they will be part of the decisions made.

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 #19502 by Melodie
Replied by Melodie on topic Just a thought
Holly,

I think your thoughts are well written and I think I understand your viewpoint on this very sensitive subject...I pray one of the administrators will come on with a good idea of how to handle this very delicate situation. We all need someone to talk with and to share. As always, you are in my daily prayers. Hugs, Melodie

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

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15 years 8 months ago - 15 years 8 months ago #19501 by mznoregrets
Just a thought was created by mznoregrets
Hi everyone,

This post is a little odd, but I have been thinking about it for quite sometime. Our community on the forum is great - usually everyone has something to contribute to a thread be it encouragement or links to information. We have formed bonds and friendships between caregivers and bridged sharing between all grades/stages of bladder cancer too. But sometimes I have felt uncomfortable sharing openly because of that as well.

Physically I have personally had to face a new primary cancer as well as likely mets. The emotional side of that is very heavy. I have been rather hesitant to address it in a thread for a few reasons. One is that the emotions are very dark and scary at times...I don't want to have it glossed over with well wishes nor do I want to freak out someone who is noninvasive or a caregiver. In all honesty, the not posting it is not working for me and I suspect a few others may be feeling this same way. After much pondering I believe I have come up with an idea to resolve the dilema...

Obviously the invasive and/or metastastis threads are appropriate placement for posts regaurding the emotions assosiated with progression,mets etc. On these threads could we have a special icon? It could represent that "this post is likely dealing with the scary emotions of mets and that only responses from other mets survivors would be appreciated". Like a disclaimer of sorts. My hope is that we can establish a way for those who are in this place to have the freedom to openly post such dark things without disturbing others on the forum who are not there.

I sure hope I haven't offended anyone or caused any distress - my intent is to find a way to safely express the emotions of mets among those dealing with it who only want responses from the same. I hope I said it right, God Bless, Holly

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