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trip2 View Drop Down
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    Posted: Mar 24 2008 at 7:30am
This may sound odd, I don't know but I wish we could have a list of member's address's or phone numbers, those that wish to participate.
I would be happy to help if I could.  The information could be sent to one member in a pm or private email.
I was thinking about Nancy, Shawn and Ferne and realize we have no way of sending a card or calling to check on someone.  Or if one of our members is in the hospital or home and to ill to get online or disappears for awhile and we know they are sick we could atleast find out if they are ok?  Wouldn't it be nice to get a card in the mail so they know we are thinking of them?
Guess I have become so attached to this group of wonderful people and the mission we have,  this forum is like my second family.  I hate missing a day reading the board.
 
What do you guys think?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2008 at 7:50am
Pam,
 
This doesn't sound odd at all. We are individuals who actually care for one another. I feel very connected to all of you. I wish we could have sent a card to Shawn's family. I know that her husband Mike was so kind in letting us know what actually transpired and whether he knows it or not, probably helped many women on this site.
 
When I don't see a posting from a particular person in days, I just assume that they are not feeling well. In the case of Shawn, it was way more than that.
 
Perhaps the administration could help us out to set this up. The people who design and set up the site would be the ones to ask.
 
I know that Hayley and many of the foundation gals read the posts every day. They will see this.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Bell Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2008 at 8:17am

Pam,

Sounds like a wonderful idea to me too.  Even though I am still new to this, I read the posts almost everyday (even though I don't always post anything).  This is certainly a unique sisterhood with so many helpful, caring, compassionate women who understand the fears & concerns of each other.  It would be nice to send cards to members & family. Even develop local support groups, get togethers or fund raising events for trip neg. 

My prayers to Ferne's family & friends
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2008 at 8:21am
Sounds good, hope you hear us Hayley?? lol
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cheryl51 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2008 at 2:39pm
I think it is a sweet idea to have an address where we could send a card...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hayleyd Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2008 at 3:57pm
Here I am. I hear you and I think it's a wonderful idea. I've tried my best to check in (by phone) on members who seem to be less active. In a few cases, I've updated you on their status.

Let me think about how we can do this without sacrificing our members' privacy . . .

Maybe we'll set up a form for interested members to fill out . . .

I'll get back to you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2008 at 5:43pm
 Pam, what a great idea. You know sometimes when a person needs a card or a phone call, they hibernate because they dont want to bring others down or just dont know what to say or do. A card in the mail personalized is a feel good thing.
I wasnt even going to check in tonight as its a crappy time right now.I dont know whats wrong. Ill see the Dr Wed.
There are people that look at me for hope with going on 11yrs. Honestly Im greatfull, but it certainly hasnt been a sleigh ride.Im sitting here with tears in my eyes because you struck a chord.I know this will pass ,but a card that someone is really thinking od you to take the time to actually do something means a lot in my opinion.
When Im up I am there fighting for everyone and posting with encouragement. But when Im down, I hide.
Tonight I will confess, If a card showed up I would feel like Im fighting for a cause.Not for just my family ,but a stranger.
  Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Elaine Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2008 at 5:44pm
Oh, let's do it!  I want to invite you all to Christmas at my house and I don't even have breast cancer but I'll be happy to host.  And I'll make sure my daughter is there.  Smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2008 at 2:48am
Jill, Hug
 
Hope today will be a better day for you.  I'm so sorry for the tears and wish I could do something to make them go away.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2008 at 2:52am
Ok Elaine, now you've done it, what time shall we be there ?LOL
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cheryl51 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2008 at 7:13am
Jill,
I wish this could be a lovely card to soothe your spirit or a funny card to bring you some cheer.  I can believe that some days and nights must just feel too hard.  I hope this morning brings you some renewal. 
A hug,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hayleyd Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2008 at 8:14am
I'll be there! What time? I'll bring brownies . . .
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hayleyd Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2008 at 8:33am
Hi Everyone,

I've been thinking about the master phone/address list you all would like to have. I think its a fabulous idea, as do all the other TNBC Foundation members with whom I discussed it. The only issue is that we don't want to have a list with your personal information stored anywhere on the website (even if it would be "hidden"). If the website were ever hacked, your private information could be compromised.

That said, we still need to make this work! Pam, since you volunteered in your original email, maybe you would like to encourage anyone interested to send you a PM with their contact information. Once you've compiled the list, you can forward a copy to me (not through the website by to my private email address). You can be the official keeper of the list! (Please let us know if this is not an honor you want to have . . . )

That way, in the event someone wants to send a card or call someone on the list, they can request the info by PM to you. We should all agree, however, that once we receive the info by PM, we will delete the PM from our inbox so that the contact information will not be stored on the website.

How does this sound so far?    
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2008 at 11:32am
Sounds great Hayley, indeed an honor, thank you so much!
 
Ok you guys, anyone who is interested PM  (trip2) me your name, address and or phone and we'll get that list going.Thumbs%20Up
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hayleyd Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2008 at 1:34pm
Thanks Pam!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2008 at 4:14pm
 Thanks Pam
   Jill
 
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2008 at 5:17am
Hey girls no need for thanks, I am tickled that I get to help somehow.Smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2008 at 7:38pm
 I think the respose you got, shows how much is needed.There are just a few of us here all the time, but when I dont hear from someone or if they are having a tough time . You are a doer.
  Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cookie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2008 at 9:22pm
OK, I am all for it too. I know when I get a card of even an e-mail from someone it makes my day. Now, how do I PM Pam?
 
By the way, I don't know if I had mentioned this but my friends have all sent me t-shirts, their clean, old t-shirts that they have drawn on, painted on, written messages to me on and I wear them to chemo, and will wear them to radiation and my final chemo. It is so nice just to have a t-shirt on from someone that I know loves and cares about me.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Netterz Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2008 at 10:24pm
I love the idea as well, and like Jill, been going thru a rough patch, mentally and physically, so I just avoid the site, because I dont want to bring others down with my issues/feelings. I agree, that even tho we all have family and friends, they are not i our 'pile' of a sort of little known, and littler known way of dealing/helping/treating this sub-type. When you tell some one you have breast cancer, they automatically think of the BC+ type, and that you have all the winnin cards in you deck to beat it. No one I know, those who have had BC, or other types of cancer, or those who have never had cancer at all, NO ONE I know, has ever heard there is any oher type of BC, including the people that have been in chemo and rad waiting/treatment rooms. I still strongly feel that the onc world is doing a horrible diservice by keeping things about us quiet. Its happening to younger ad younger women all the time, of all colors.  I question the idea that they say its more prone to black and hispanic women prevalency. Hiding us in the back corner makes me feel like the orphan of oncology. I am the bad kid that no one wants to adopt, because I have problems no one really knows what to do with, so I am the one that will never get adopted. When I come here, its the one place I can be, where I kow  am not alone. And if I can help some one else, by sending a card, a note, something that anyone here in my T-neg family can actually hold in there hands, and come to think of it, who doesnt like to get a card in the mail? I know I havent posted on here in awhile, but am still kickin, just have been having a bad time getting thru rads, an had a problem with being on Levaquin for too long, as well as being serioudly burned from rads. None of there creams helped, so have had to go my ow way, since I am a true beleiver in herbal and essential oils, to heal myself. I will be posting the things I am using, since the FDA medicinals have failed me miserably.
T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
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