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adube's picture
adube
Posts: 66
Joined: Sep 2011

Hey guys-- I feel awful for neglecting my friends and updates here lately (between a new job and a new nephew, holidays, dad, etc-- doesnt seem enough hours in the day!). Anyway, I think getting connected with you guys on Facebook might help me stay a bit more connected when I'm not at home. The mobile version of the website is sometimes tricky to navigate from my phone. Anyway, just wanted to use this as an open invite to add me on "the book." you can find me at:

www.facebook.com/anitadoobie -- it's my roller derby name :)

If anyone else wants to jump in and add their name I can manage the list in the top post. There might already be a thread like this somewhere, but I couldn't find it. :(

Love you guys!
-Ali (daughter of Mike, IV)

PS- chemo-- glad to hear you're ok! :) and I'm glad you're posting about your love for life. It reminds me to enjoy every minute, hectic though it might be. :) <3
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If you would like to be added to the EC CSN group that Mruble created, please PM her.
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Running List:

ChaadMN - Chad Lund - http://on.fb.me/tdeT1V
ritawaite13 - Rita Stenseth Waite - http://on.fb.me/uM685y
JReed - Judy Reed - http://on.fb.me/rMKNnO
DaisyLin - Chantal Whitehead - http://on.fb.me/tWyKX5
JaneO - Jane Olson - http://on.fb.me/vD8i48
Chemosmoker - Eric - Eric's Group: http://on.fb.me/ta1UVJ
unclaw2002 - Cindy Collins - http://on.fb.me/uSeFcy
MissusB - http://on.fb.me/rWDEeB
JGWright - Jerry - http://on.fb.me/rsAkhO
Mishti - http://on.fb.me/ula39b
Cher76 - http://on.fb.me/tXaFJQ (her MD: http://on.fb.me/tQFMCz )
JimboC - http://on.fb.me/v9WTA0
Mruble - Mary Ruble - http://on.fb.me/uzF1WC (her EC groups: http://on.fb.me/u2X5C9 , http://on.fb.me/uOd8dq and http://on.fb.me/sElSTs )
ndmp - Nicole Mantovani-Percy - http://on.fb.me/tVXVG3
unclaw2002 - Cindy - http://on.fb.me/v8KOwP
wagnhc - Heather Wagner - http://on.fb.me/uws9oZ
jim2011 - Jim - http://on.fb.me/unLBTP

ChaadMN's picture
ChaadMN
Posts: 33
Joined: Sep 2011

I think this is a good idea to not only keep in touch with each other, but it will allow us to get to know each other better.

my page is www.facebook.com/chad.lund

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

I'm Rita Stenseth Waite on facebook and check that page regularly too. I'm still peeking at this page too because I feel connected to the people on here but facebook is a great communication tool.
Rita
PS: I love your roller derby name! I have a niece who skates as Reba Smackentire.

adube's picture
adube
Posts: 66
Joined: Sep 2011

That's too cool! I think the more popular modern day derby gets the smaller the world becomes between us all. What city does your niece skate for? What an awesome name!

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

Hi
My niece skates in a small town in Minnesota - Lindstrom. She's relatively new to the sport and when she told the family her name, we all roared with laughter. She's quite a character. Your name is pretty darned cute, too. 8-)

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

my facebook link is :

http://www.facebook.com/#!/profile.php?id=1140581561

Judy Reed

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

mine is....

https://www.facebook.com/profile.php?id=809055369 (Chantal Whitehead)

JaneO's picture
JaneO
Posts: 42
Joined: Dec 2011

my facebook link is:

http://www.facebook.com/profile.php?id=827863863&ref=tn_tnmn

my profile is usually blocked when searched, but I can always friend someone and then find everyone.

Jane Olson

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Adube,
Yes Facebook can be easier to keep in touch as these threads are usually much more serious and focused. I agree and will join you too.

https://www.facebook.com/groups/292068124142129/

Eric

adube's picture
adube
Posts: 66
Joined: Sep 2011

What a great idea! :) I just like facebook a lot because it sends you an email when there are new conversations and what not. Plus, I know a lot of people come here to talk about EC specifically and I'm excited to get to know you guys outside of this demon. :D

<3

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Hi,

I am on facebook as well at https://www.facebook.com/?ref=tn_tnmn#!/profile.php?id=1417064323 (Cindy Collins). I am already friends with some on the Board but it is nice to see discussions about other things. Please friend me.

Cindy

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

Count me in - https://www.facebook.com/#!/MissusB2U Looking forward to getting to know everyone better!

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

http://www.facebook.com/profile.php?id=100000511744933

Yeah, me too. But minimal. Too much information to too many people. So I keep a low profile.

--Jerry

adube's picture
adube
Posts: 66
Joined: Sep 2011

Please be careful if you talk about EC on my wall, because some of my extended family members and friends don't know about my dad yet. He's a very private guy and proud-- I think he has it in his head that we're all going to treat him differently or maybe constantly remind him of EC, always asking how he is or how we can help-- obviously that's a mark of a great support system, but I respect his wishes that he's not ready yet. I figure this will be the place for updates and EC specific discussions and we can just have a facebook social club! :D Would anyone be interested if I started a group, or is it ok for all of us to crash Eric's? :) *ahem* I'm sorry, I meant: OR IS IT OK FOR ALL OF US TO CRASH ERIC'S?

Proactive Daughter's picture
Proactive Daughter
Posts: 55
Joined: Dec 2011

Hi, I just joined the group today adn would love to learn more from all of you. Can I join in on the Facebook group? One problem is that I can't find what my facebook address is. I'm Jen Collins from Sudbury, ontario...

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

Just bring up your facebook account and copy the URL. (That's that http thing that would say something like "http://www.facebook.com/profile..." somesuch.

--Jerry

adube's picture
adube
Posts: 66
Joined: Sep 2011

Hey Jen -- I couldn't find you in the look up-- too many Jen Collins I guess! Can you send me a friend request and then I can post your address for everyone up top? :)

-Alissa (daughter of Mike, IV)

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

All,

I'm not on Facebook, so don't have an address to share. Just not the Facebook type, but....

A girlfriend with Facebook told me months ago when Nick was first diagnosed that there is an EC support group already on Facebook. You might want try finding them. There may be some people there that don't know about us here at CSN. And who could ever turn down new sources of EC information?

Got to say - for the first time, I actually kind of considered getting a Facebook account ;)

Love y'all!

Terry

MomhasStage4EC's picture
MomhasStage4EC
Posts: 39
Joined: Jul 2011

You should get one Terry. Especially for those times when you dont feel like talking on the phone but you want to chat. Its really great to have.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Being a Network Administrator for years has taught me to distrust the Internet. Too many hackers and too much personal information available on Facebook. That plus I don't really need abitger computer site to take more time from my day.

The hazards of being a geek :)

Terry

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

Anyone who TRUSTS Facebook deserves the pain. No question about FB being a timesink, if allowed though.

I need to put my Linux server back on line. I took it down due to a RAM failure, but haven't set it back up. I've had other issues to deal with...
--Jerry

MomhasStage4EC's picture
MomhasStage4EC
Posts: 39
Joined: Jul 2011

Aww poor face book lol. All of my family and friends are on it...I mostly use it on my iphone. It hasnt ruined my phone yet. As for my computer well its already a POS so I dont mind :)

adube's picture
adube
Posts: 66
Joined: Sep 2011

I'm totally with you-- people get freaked out about personal info, but you don't have to share anything you don't want to, you know? Plus with all the additional privacy settings, it's easy to make different groups of friends who can or cannot see certain things on your site. For example, I don't allow anyone who adds me because they are roller derby fans to see anything about me other than my photos of derby. You know? Not even my wall or friends list. It's as private or as public as you choose to make it. Love that.

mishti
Posts: 24
Joined: Mar 2011

Hi,

This is a great idea..we will be able to connect to everyone much better on facebook. The link to my profile is
http://www.facebook.com/profile.php?id=622370223

mishti
Posts: 24
Joined: Mar 2011

Hi,

This is a great idea..we will be able to connect to everyone much better on facebook. The link to my profile is
http://www.facebook.com/profile.php?id=622370223

cher76's picture
cher76
Posts: 302
Joined: Nov 2010

This is my page.
https://www.facebook.com/profile.php?id=1753740459

The following page is by our doctor at MD Anderson. Post some good info sometimes. https://www.facebook.com/pages/Esophageal-and-Gastric-Cancer-Resource/196966500315899

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

http://www.facebook.com/profile.php?id=1130670792 Gotta warn you though, I'm pretty boring. ;)

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Here's mine -- https://www.facebook.com/mary.ruble
And here are a few of EC groups -- https://www.facebook.com/groups/87032539390/ and https://www.facebook.com/groups/40251501786/ and https://www.facebook.com/groups/6744305812/

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

I copy and paste your facebook links but I must be doing it wrong - I can find all of you - any ideas as to what I am doing wrong?

Judy

ndmp's picture
ndmp
Posts: 38
Joined: Jan 2009

Hello,

I haven't posted for a long time. I lost my dad to this beast we know as EC. The beautiful thing was he lived to see my beautiful twins be born, for that I am gratful. I try to us FB as a way to get the word out about any new development in cancer. I did send out a few friend request. You can send me a friend request Nicole Mantovani-Percy
Nicole

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Someone mentioned a Facebook group but it doesn't look like one has been set up yet so I created one (hope that's okay) https://www.facebook.com/groups/140991832678744/
It is a secret group so you are only able to see it, its members and any postings if you are a member of the group. Right now I'm only friends with a couple of people from here so they are the only ones who have been added to the group. Everyone is welcome and once you are a member, you can add additional people.

CSN Esophageal Cancer Group

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I'm on FB, but it's a love/hate relationship. I finally figured out how to turnoff all the comments from people I don't know who comment on posts by people I do know. I only want to see what my kids/family say, or that some of my Corvette club friends say. Other than that, I don't need the social aspects of FB.

There are ways to create private groups where only those IN the group can see the comments. I like that. Yesterday's post by me was happiness that Barkley is staying a Trojan for one more year! Fight on!

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Okay, so you'll need to be invited if you want to join the group. I would add anyone who responded to the original posting but don't want to make any assumptions about your interest. So, just let me know if you want to be added.

Mary

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Sure... add me! I think my FB name is just Ginny Bender (Upland, CA)

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Mary please add me = I am at https://www.facebook.com/#!/profile.php?id=1417064323

thanks Cindy

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

Hi Mary,
I'd like to be a part of this group too. My fb name is Rita Stenseth Waite. Thanks for setting this up.
Rita

adube's picture
adube
Posts: 66
Joined: Sep 2011

hey is there a way to make it public so we can follow the link and then have to request to join it? that would save you from having to invite everyone, then you could just accept the requests? Just a thought. Either way, I'd like to be added! :D

Thanks!!
-Alissa

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Good idea, Alissa, if only I knew how to do it! Once people become members they are free to add other people themselves so it's not too bad the way it is. And I've added you.

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Good idea, Alissa, if only I knew how to do it! Once people become members they are free to add other people themselves so it's not too bad the way it is. And I've added you.

hobbssy
Posts: 19
Joined: Aug 2010

Hi Mary. Can you add me too. Patti Peebles

http://www.facebook.com/#!/profile.php?id=639822050

wagnhc's picture
wagnhc
Posts: 11
Joined: Sep 2011

Heather Wagner http://www.facebook.com/profile.php?id=1187604104&ref=tn_tnmn

Mazj's picture
Mazj
Posts: 42
Joined: Oct 2011

Can't find my Facebook address- I think because I use my phone to access it. But I love the idea of the private group. If you can find me I am Marilyn Jacobs of Melbourne, Victoria, Australia. Thank you so much.

paul61's picture
paul61
Posts: 1111
Joined: Apr 2010

I would like to be added to the group as well my Facebook address is http://www.facebook.com/profile.php?id=1490422440

adube's picture
adube
Posts: 66
Joined: Sep 2011

Hey there Marilyn... I'm having trouble searching for you. If you could, send me a friend request (my address is in the top post) and then I can get you on the list... :)

cher76's picture
cher76
Posts: 302
Joined: Nov 2010

Please invite me to the group. My name is Cheryl Grover Janssen, and my profile page is
https://www.facebook.com/profile.php?id=1753740459
Thanks,
Cheryl

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

please add me as well

http://www.facebook.com/#!/profile.php?id=655594930

adube's picture
adube
Posts: 66
Joined: Sep 2011

Master list has been updated. :) Yay! I'm glad everyone is so excited about this new method of communication!! I sometimes can't get through all the thread updates because I've been away from my computer for days-- I'm glad this will help us all stay in touch. :)

<3 Alissa

(daughter of mike, IV)

i35chica
Posts: 17
Joined: Dec 2011

We are new to EC. In October, my sister (Gayle) was diagnosed with stage IV Please add us. We are new to FB and could not find the group. Please add Karyn Riley Wilson, Frisco, Texas, and Gayle Riley Dewbre, Blanchard, Oklahoma. Thanks and God Bless Everyone.

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Karyn - I've sent friend requests to both you and Gayle. Once you respond to those, I can add you to the group. I'm very sorry to hear about Gayle's diagnoses. My husband is also stage 4 and has been fighting the beast for 26 months.

casp42
Posts: 79
Joined: Jul 2011

If possible, can you add me to the facebook page
https://www.facebook.com/profile.php?id=1446896462&ref=pymk#!/profile.php?id=100000226714900.

Thanks so much,

Carolyn

T-Bird
Posts: 25
Joined: Aug 2011

Hi Mary; I would like to be added as well, with thanks!

https://www.facebook.com/#!/profile.php?id=622587092

Teresa

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