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Posted 12/14/2012 2:57 AM (GMT 0)
Hello Guys/Gals,

I recently wrote a piece on our prostate cancer journey.  I would love to share, but there is a picture of me/hubby, and our names.  I have debated sharing it here.  I really want to, but I am worried about, Goodness, I don't know what.  Funny, the newsletter was sent to MANY people.  Would I be opening myself up too much if I shared here?  I truly find myself at a loss.  Would you share your story here, if you knew it exposed your first and last name?  I just want to make sure I'm not missing anything.  I feel like the kid that doesn't understand the ramifications of their choices.  OR, am I making a mountain out of a molehill?

Posted 12/14/2012 3:05 AM (GMT 0)
WalkbyFaith

Check my email. Thats my last name.

I've been really free about sharing my first name - Bud.

Its up to you. Personally I would like to read "Your Story".

Hugs

Bud
Posted 12/14/2012 3:08 AM (GMT 0)
that's a personal choice, would loe to read it. my real name has been used here, first and last, for over 4 years and it has never caused me any harm. as for me, i don't worry about such things, but again, its a very personal choice

david riley in sc

(Anyone can pick my name right off my e-mail, no secret, have had it since 1995)
Posted 12/14/2012 3:22 AM (GMT 0)
I too have shared personal information and it has never been an issue.

You need to feel comfortable with your decision.

Zimac
(Chris)
Posted 12/14/2012 3:30 AM (GMT 0)
Maybe it's the putting it out there within our little community here at Healingwell. Nervous! ;) Thanks for the feedback so far. I've been leaning towards posting, for a few weeks now. If it can help, or inspire just 1 person, it will have done its job!
Posted 12/14/2012 3:38 AM (GMT 0)
I'd love to read it but personal information out here is beyond some people's comfort zone which I understand. I am fairly free about what I put out but I do have a few limits.

Don't know if this is possible for you but a middle ground would be to edit the story, removing the last names and identifying information. Then you could post it. Of course that might be more work than you want to do.

Whatever you chose is fine by me.

All the best,
Andrew
Posted 12/14/2012 4:13 AM (GMT 0)
walkbyfaith,
I would love to read it. Some of us have an email address in our profile (including me .. it is my real name) you can use to email your piece if you prefer not to post it for anyone on the internet to read.

As far as anonymity goes .. I will share info with anyone that asks or wants to talk. Most of my friends, coworkers, and customers know I have prostate cancer and know all about my treatments, including HT. I will even occasionally make reference to it on Facebook. (FYI: I am Facebook friends with several on HW.) However, there are things I want to post about here that I prefer not show up in a "google" for my name. For example, I don't care to have all of my friends to see my postings on my ED or sex life. I typically keep the that kind of stuff of their radar ... I am pretty sure they do not want to know. Maybe I will eventually not worry about it so much.

SC

Posted 12/14/2012 5:29 AM (GMT 0)
Walkbyfaith, As others have posted. It is a choice. I have been very open with everyone here and in my personal life. I do know others that are not comfortable with that and that is fine. I have even opened my house for the GFMPH gatherings and had many members sleeping in my house. In my opinion we are a big family. Some worry about non-memebers reading the post.

I would love to read your story it is the way many of us have become so very close. I probably had met more HW PCa people than many here. It has always been with great joy. I also plan to have another gathering April 20th.

Best of luck with your decision making.

Cajun Jeff
Posted 12/14/2012 9:15 AM (GMT 0)
One compromise is to post it elsewhere and then post instructions for finding it here (but not an actual link). That way humans reading your post here can find it but the various bots and spiders that produce information for spammers and search engines won't see the connection.

And, yes, I'd like to read your story too.
Posted 12/14/2012 11:09 AM (GMT 0)
WalkbyFaith - just think about the consequences of posting here. What are they? The only ones i can think of are
1. if there is information in the piece that you dont want to show up in a google search of your name
2. the possibility that a less than well intended person lurking here on the forum might use it to try to contact you and sell you something.
Add whatever other downsides you can come up with and then just ask yourself if you care about them. Then it will be an easy decision.
Like the others, i would like to read your story. We all learn from each other. (And i need a lot of schooling)
Posted 12/14/2012 1:03 PM (GMT 0)
WalkByFaith - Hi from Jeff Gumm, "A Yooper" - this is the first time I've used my name here, but after reading your thread and thinking about it, I actually feel good about sharing this with my brothers and sisters here at HW. I have met up with a couple of the guys (Casey59 and Clocknut) so they know who I am and I also look forward to hopefully hooking up with more at one of the GFMPH get-togethers.

This HW community was (still is) so instrumental in my journey - of learning about this beast as well as what treatment options are out there and so on and so on, so I am totally comfortable sharing the "real me."

As others have stated this decision, like all of the other decisions involving the journey we are all on, is a very personal one - and I don't believe anyone here will feel "slighted" if you choose not to share.

Best to you both, always.
Posted 12/14/2012 1:28 PM (GMT 0)
Walkbyfaith: Tony on this site posts his personal story with updates regularly on Caringbridge.org

I'm not sure how that works, but maybe he, or one of the other guys who undertands blogging better than I do, will see the thread and explain.

That seems safer to me.

A couple of years ago, I shared my PCa journal with Tony, and he suggested I post it on Caringbridge. I haven't done so, but I read his regularly.
Posted 12/14/2012 1:33 PM (GMT 0)
What gets posted on the internet stays on the internet smhair

If you aren't concerned about the possibility that everyone you know or that you will meet - could find the info - post away.

If you "are" concerned - post a revised version of the story.
Posted 12/14/2012 2:01 PM (GMT 0)
Just curious, don't mean to hijack, just quick question - what is GFMPH?
Posted 12/14/2012 2:20 PM (GMT 0)
walkbyfaith -

Is your article the write-up you were going to do for PCRI, as a result of information you gathered from your thread here "Question for braniacs," which you started Oct. 22?

I remember that you and I exchanged some posts in that thread, where I had found and posted some web info about Gleason scores, we talked a little about PC aggressiveness, etc. Then you said you were writing this up for another site but would let us know how it went.

If that's it, then, yes, I'm sure we would all love to read your story, BUT, as others have said, only if you are comfortable with posting it. I'm getting the definite vibe that you would prefer to keep out certain information, which is fine.

But there have been some good suggestions so far on ways to do this. Perhaps one of them will fit the bill and you can tell us your story
.
Posted 12/14/2012 2:20 PM (GMT 0)
"Good For Men's Prostate Health" - I'm still a relatively "newbie" but have come to know, understand, and appreciate what is GFMPH!
Posted 12/14/2012 2:32 PM (GMT 0)
Hey Yoop, thanks for posting your name.

Now... what did you say your social security number was....?

<G>

On a more serious level, given the degree if unscrupulous behavior on the internet and the large degree of ID theft these days, I would be a tad hesitant, although I do allow email access via HW

Mel

Posted 12/14/2012 4:08 PM (GMT 0)
Pratoman:

G.F.M.P.H when used as an adjectival complement -- as in "Buying a new pickup truck is very GFMPH" represents the idea that indulgence in typical manly enthusiasms is "Good For Men's Prostate Health."

When used as a noun it refers to a gathering of members of this forum held several times a year for the purpose of pushing the envelope to see how widely that idea can be applied.

I believe the next such gathering is in April. I am currently wheedling with she who must be obeyed to get it put on my travel itinerary.
Posted 12/14/2012 4:58 PM (GMT 0)
"she who must be obeyed" TOO TOO FUNNY!!! Maybe I need to implement that phrase into my life and introduce it to Michael......not sure how that will go over, but cant hurt to try!

I would take last names out and not post a photo. Coming from a Law Enforcement Officer. Just being safe.

Susan
Posted 12/14/2012 5:21 PM (GMT 0)
Weighing the great good and inspiration a story like yours would have vs. your anonymity, I think you should post it.
Posted 12/14/2012 7:32 PM (GMT 0)
Thanks for the answer on GFMPH Guys.

As far as she who must be obeyed, I simply call her The Boss.
Posted 12/15/2012 1:09 AM (GMT 0)
It is always interesting when someone else shares their journey.  However, as your name and/or photo has no bearing on the journey itself I, for one, would certainly delete it.  A google search reveals a great deal on an individual who posts on forums, websites, etc.  Granted, in all probability nothing will come of it, I would still be reluctant to provide information that may not be relevant, other than identification,  to the subject at hand. 

I beleive there is a find and replace command in most word processing programs.  That might help to make your task a little easier.

Mr. Bill

Posted 12/15/2012 9:07 PM (GMT 0)
It seems these days that everyone googles people for too many reasons. Employers, banks, even volunteer organizations.

I would be very hesitant to use full names. There is a rule about personal contact information (you can put an email in your profile, but not an open post. What gets on the internet is almost impossible to remove.

Posted 12/15/2012 9:35 PM (GMT 0)
If you clicked on the "forum rules" above the main Prostate Cancer page you would find that

Rule 4 Bullet 3 said...
Links to personal blogs/homepages are allowed in member profiles and signatures

How much anonymity you want to maintain in your own blog is up to you but it is not against the rules to link to it in your signature.

For myself, I keep my HealingWell identity disconnected from my other online personae. This is not because I don't want to keep my HealingWell friends from knowing I live in Smallville, or that my last name is Kent, but because I don't want some random Googler to be able to find out.

The email address in my profile works. If anyone on this forum emails me and asks I will be glad to reply from my real email address, signing my real name (which isn't Peter by-the-way), and providing a link to my annual Christmas card insert newsletter with holiday wishes, dumb jokes and photos of me, my wife, my kids and grandchildren (the twins who are dangerously cute at 13 months).

You could post an offer to send a copy of your story. That way, spiders, bots and search engines don't have a link to follow. It requires an anonymous email account in your profile. There are several of us here who would be glad to help you set such a thing up.
Posted 12/15/2012 10:33 PM (GMT 0)

Walkbyfaith,  I read your story several days ago but didn't make the connection with your post until today.  You wrote an excellent story and did a great job of capturing the feelings and emotions that go with our disease. 

Since your story is already on the internet, you might just want to "Google" your names and see what comes up.  If you use facebook or other social media your name and info is out there. 

You might consider just mentioning the publication that carried your story but not provide any links.  Anyone on HW that is interested in your story should be able to find it without too much trouble.

You are a very good writer and have a great story to tell.

Carlos

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