Metastatic Breast Cancer Information Sharing and Support Group

susanagg2

Name of Group:  Metastatic Breast Cancer Information Sharing and Support Group

 Group’s facebook page:  https://www.facebook.com/groups/198373103658047/

 The purpose of this group is to provide a friendly, safe environment for information sharing and support for people who have metastatic breast cancer (aka "MBC").  

 Feel free to share your diagnosis and treatment and how you feel.  You can post information or links to websites about conventional or alternative cancer treatments, nutritional remedies, information about clinical trials, side effects of medications, and other issues that relate in any way to MBC and its effects on your life.   This is a safe place to vent your feelings about cancer and how it is affecting your family and relationships, work, etc.  Information about how to get health care, pain medication, insurance, medical benefits, etc. are always welcome.

 This is a secular group and we welcome atheists, agnostics, Christians, Jews, Bahai, Buddhists, Pagans, Muslims, gay and lesbian, straight, and everyone else.  If you want to talk about how your spiritual beliefs help you cope with cancer, that's fine, but please do not proseletyze. 

 Racist, antisemitic and homophobic comments are not acceptable.   It is not OK to personally attack other posters.   If you want to disagree with something someone else has posted, please do it respectfully. 

 Please do not post commercial advertisements. Its OK to post links to organizations that sell products useful to MBC patients (mastectomy products, wigs, scarves, etc.).

 This is a CLOSED group.  That means that posts are visible only to members.  If a post shows up in your news feed, its because you are a member, and only people who are also members of this group will see it, your other facebook friends will not.    And because this is a closed group that is intended to provide "safe space," please do not under any circumstances copy or forward other people's posts (its OK to repost public links). 

 Thank you for understanding.  

leggo

So what did this say? I'd kind of like to know as it pertains to me. I can't even begin to explain how annoyed I get when posts are deleted. Mods, perhaps you could add a "reason" when deleting posts. If it's spam, ok, but please keep in mind that one person's spam may be someone else's treasure. Just to add, so I don't come across as totally bitchy, when you, the mods, are deleting posts, I'm generally ok with it, but still a word or two about why would be nice. On the other hand, deletions by the community to me are unacceptable. You really have to take that power out of the hands of members. It's irritating as hell.

susanagg2

It was simply an announcement of a new facebook support group for Metastatic Breast Cancer patients.  I was told:

1.  That I was posing as a breast cancer patient, when I am not one (I offered to send them my medical reports...oh how I wish I was an imposter!!!)  And I asked them why they did not simply ASK me who I was?

2.  That I was engaged in peddling "goods and services" for profit and that is a violation of the rules.  (I am a 66 year old social security recipient living in the Republic of Panama, and I am not selling anything.)  They did not tell me what they thought I was "selling..."

3.  That it is a violation of the rules of this group to post about a support group.  I read the rules and did not see anything like that.  I read every rule carefully and responded to the unnamed "moderrator" by asking them to tell me which rule they claim I violated...

I was diagnosed in April 2012, go right to chemo, do not pass GO, do not collect $200!  Followed up by a mastectomy.  Most of the mets went away, still have them in the bones.   One thing I realized is that the so called "cancer community" is a hotbed of intrigue, intrigue and competition.  Who knew?  I've already been banned by one support group (Ithis for publicly announcing my lack of Christianity) and that's why I started the new group.  The old group was so full of Christian bias and did not provide a welcoming environment for non Christians.  I wanted a group that welcomes EVERYBODY.  Apparently, that is a big no no.   I guess a lot of these websites, if they don't have a religious or political agenda, are affiliated with corporations, who are less than enamoured of the idea of a bunch of people talking about stuff...maybe someone will say something bad about one of their products?

If  you or anybody reading this wants to participate in the new group and is on facebook, they can do a facebook group search.  I am sure that typing in the words "metastatic breast cancer" will find both my group and the "non Christians need not apply" group.  Mine is new and since I just set it up yesterday, only a handful of people have joined. You can also send me a private email if you have any trouble finding the group's page and I will email you back.  Or you can send me a facebook PM.   Please feel free to share.  I wouuld like to have as many people as possible.  

Edited to remove user's personally identifiable information and contact information. If you'd like to reach this member, please exchange contact information through Private Messaging.

susanagg2

I should add that in my previous life, I was a civil rights attorney, and I guess stirring up stuff is still in my blood.  The difference is, now I am acting to help myself, whereas in the past it was always for other people.  I found a support group very helpful and learned a lot (and I also contributed a lot, but the moderators could not see that, once I proclaimed my non Christianity, it was good night Irene for me..)  I would like to find one or two people to co moderate the group.  Not that I want to do much"moderating," but because its a closed group, every request to join must be answered, and when I have to travel to the city (I live on an island) for treatment, I may be offline for a day or two and I don't want to make people wait.  Would you consider volunteering?  

stagefree

The post has already been removed, but I would like to underline (anyway) the fact that BCO and members of the boards have been most welcoming, regardless of our origin, especially our religions.



Ebru, a Muslim

HLB

I agree with leggo on this. I will search for the group and see for myself if I want to join. I don't understand why the OP was deleted.