Has The Entire World Lost Its Respect For Others?

Joe · 11-21-2007, 11:55 AM

I am very disheartened over activities which have taken place on this board over the past few days.

Christine and I receive no personal compensation from the HER2 Support Group. I still have a full time job for the sole purpose of providing medical benefits for Christine and Myself.

In addition to my employment, I also spend at least 30 hours a week maintaining our organization, doing fundraising, preparing for the several breast cancer meetings and symposiums that we attend each year, and numerous other chores for the benefit of our members. We are not under any obligation to maintain these boards or even our organization.
It was because of these activities that I neglected to pay attention to certain activities occuring on these boards.

Other COO's of "non-profit" breast cancer support groups receive anywhere from $90,000 to $300,000 for their services.

I have mentioned on several occasions that we expect members to use the same manners on our message boards as if you were visiting us in our home. All of you have seen my signature, and I meant every word of it. I have always been proud that the users of our website acted as adults and did not participate in infighting as is commonplace on some other boards. Christine and I have always considered all of you to be one big family united in purpose - TO SURVIVE

I will no longer tolerate disrespectful behavior on our message boards. In over 5 years of operations I have only had to delete 2 threads which I considered offensive. Today I am deleting another.

Tomorrow we will celebrate Thanksgiving. I echo Rhonda's post. Not only should we be thankful for this organization, but also for those members who have contributed so much to this organization and are no longer with us.

Rhonda, I'd also like to add Lynn, Hope, Shell, Lu Ann, and Janelle to your list.

A pleasant Thanksgiving to you all and for those who were planning to leave our family - please reconsider.

Regards
Joe

BonnieR · 11-21-2007, 12:38 PM

Since this is the season for remembering to give thanks, I think it is a perfect time I made a donation to this awesome site.
With love and thanks,
Bonnie

P.S. Except the "make a donation" link does not work for me!

Karen W · 11-21-2007, 01:37 PM

I am in the process of making a donation to this awesome site, too. I am also grateful everyday for Joe, Christine and this site.

And to all... a very Happy Thanksgiving.

Karen

BonnieR · 11-21-2007, 01:40 PM

Karen, did the link work for you???

hutchibk · 11-21-2007, 02:00 PM

I am beyond thankful for this site and the job that Joe and Christine do. Please Joe - don't give up. I would be lost without this site.

Karen W · 11-21-2007, 02:07 PM

Bonnie,

There is an address to send check to, so that is what I am doing.

Karen

Leslie's sister · 11-21-2007, 02:10 PM

Joe and Christine:
Thank you for everything that you have done to make this site happen. This is my one source for Her2 info. I am completely at ease knowing that if it is happening then the people at Her2support will be all over it. Thanks for reeling this thing back in. This site is what it is because YOU BOTH have made it that way. I believe that knowledge is power and you empower all of us with the knowledge we need in the battle against the real enemy CANCER!

jones7676 · 11-21-2007, 02:15 PM

I am not quite sure who posted what, and I cannot make a donation at this time, but I hope my situation improves at some point in the future and I will be able to. However, I sure will express my deepest gratitude for this program and the support I have received by being a member.
I know of no other place I can go anytime (even at 2 a.m.) - when I am worried or upset and find the knowledge, hope, empathy and strength to go on. I find it here. Joe and Christine you are wonderful people and I hope you count me as one individual who appreciates the work that you do for us. I cannot find words that will adequately express the gratitude I feel. I hope you will feel it by reading this short post though.

fauxgypsy · 11-21-2007, 02:40 PM

Joe, I cannot imagine the amount work, love and effort that you and Christine have put into this wonderful site. I appreciate it immensely. Thank you both for this wonderful board.

Leslie

Patrice · 11-21-2007, 02:53 PM

Thank you Joe & Christine for all you do. I've also tried to make a donation since I joined, but the link doesn't work. Is there some other way?

Many thanks & Happy Thanksgiving (if you celebrate it). Patrice

Julie · 11-21-2007, 03:20 PM

I don't post very often and I'm not very good with words but from the time I stumbled on this site several years ago I have had nothing but admiration and respect for Joe and Christine. What strikes me so about them is that their hearts are visible in everything they do, in everything they post. I think people so willing to give in the ways they have, are sadly rare.
Thank you, Joe, from the bottom of *my* heart.

Julie

IRENE FROM TAMPA · 11-21-2007, 03:27 PM

I just want to add my THANK YOU BOTH SO MUCH for providing all of us this wonderful site. It is something that I visit daily, sometimes several times a day. This site has led me to so much knowledge and future treatments because of the dedication some members have put into research and sharing with the rest of us.

As an "old timer" to this board, I can understand your feelings and hope everyone "gets the message" real soon.

Wishing you and your family a very wonderful, peaceful and safe holiday.

dhealey · 11-21-2007, 03:54 PM

Joe and Christine, Thank you both for your hard work making this website work. I was lost when first diagnosed and was so happy to find this site. It provides a wealth of information plus support. I Pray you will continue to keep this going. Have a blessed Thanksgiving.

tousled1 · 11-21-2007, 04:12 PM

Joe & Christine,

I want to thank you both for all the hard work you put into maintaining this wonderful webiste. I know I'd be lost without it. I don't know what post you are talking about and I guess that's a good thing. You both should be comended for the wonderful job you do for us HER2 breast cancer women.

tricia keegan · 11-21-2007, 05:45 PM

Joe and Christine I hve to echo what kate just said, I don't know what post you're talking about but don't want to! I don't post very often but respond when I can as there are lots of people here with far more knowledge than I . However, I truely appreciate being able to come here and be educated by you all about this disease.
I'd be lost without it, I live in Ireland and there's nothig to compare with it.
Please know you are both appreciated so much for the work you put into this site for us. A HUGE Thank you from Ireland.

newgg · 11-21-2007, 05:47 PM

Joe and Christine,
Do not think you even realize how very much this site means to us....to me. You may have some small idea but you do not realize. Read here almost every day and some days several times a day. This is where I feel grounded and secure in the fact that I will find information that I can use to continue my LIFE. This is where we go to share and learn from all who have been there and done that. That is what we all want....the info, tools, chemo, whatever ....to continue our LIFE. All the good.....all the support...all the love.....all those who research for us......I struggle with the words to express the power and strength that I find here. Have sent and will continue to send funds to you when I can and you have my continued admiration. Your site and message board must continue. A major....do mean MAJOR....source of power would be lost to so many.
Please....delete when you need to do so......but this message board give us POWER and must continue for the support of the majority.
Hugs, Bonnie

ita · 11-21-2007, 06:58 PM

I too do not know what on earth could have been written that was so hurtful that it would have caused you, Joe, to delete a post. I am truly sorry for whatever it was that happened.

I am glad I missed that post.

I love this site. I love the members, whether or not I am in agreement with their thoughts. Each one of you have taught me something. Without all of you, well, there are no words. Joe and Christine, please know that you two are our lifeline. You have given us an incredible gift. I sincerely thank you. Although I seldom write, it is not because I don't want to but because I am not sure I have anything else to add than what has already been so beautifully written.

I am once again sorry for whatever it was transpired. We, as a cummunity, are always and will always be grateful.

Ita

Mary Anne in TX · 11-21-2007, 07:25 PM

3 weeks ago when I had my appointment with my onc we talked so frankly about my situation and what to do to keep me on track for good health. We talked about options other than herceptin, but settled on it after some discussion. We had that discussion because of this site. I knew what I believed would be best for me and stated why because of the education I receive each time I come here to learn from and pray for others in need. My onc told me how nice it is to work with an informed patient! Made my day!
I believe that the site is far more than a place to come for education and support. I believe that it has empowered me also because of the respect I have gained being associated with each of you and this site. I am grateful beyond words. I went for my first appointment shaking and so very fearful. Now I show up to get herceptin and to see my nurses and friends in the treatment room. I am glad to be able to go and grow stronger! I know that my care is "top drawer" because of what I have learned here! I read everyone "signature" and see what they received and for how long, etc. Everyday I learn more and more.
I so want to honor each of those we have lost, to support each of you, and most of all to respect the incredibly hard work done by Joe and Christine that I believe has guided my treatment thru education and the support to "fight for myself".
Luv and "thanksliving" to you all,
Mary Anne

Andrea Barnett Budin · 11-21-2007, 07:42 PM

Thank you Joe and Christine for stopping the madness. Poisonous words and insults are harmful to our health. Thank you for doing what you had to do to eradicate a spreading hostility and negativity that threatened us all. I do believe we are capable of intellectual discourse, expressing differing views without attacking and making it personal. We have done it before, and we will each be careful to continue to respect one another, as our Mothers taught us. I believe, in my heart of hearts, that the harshness came from people who are in a great deal of emotional pain. Still, that does not give anyone license to verbally assail another human being's character. You have stood up for what is right, and for that I am deeply thankful. That is awesome.

Beyond that, Joe and Christine, I love being here, in your home, with my Sisters. This site is a poignant place to come and gather knowledge and empowerment. To connect with others just like us, which is so stirringly significant to each and every one of us. I cannot adequately say how much I admire you both for your dedication to this support group. It is a vital link, a source of unfathomable value. We all treasure you for this gift you give so generously and so devotedly. Thank you for being there, for always being there, almost like God, even hearing 2AM pleas for help. Bless you! This HER2 Site is at the top of my list of things I am grateful for in my life. I speak of this site incessantly. I suppose I would require a support group to get over the loss of this support group, which I am happily and totally addicted to. With huge respect and appreciation for all you do so selflessly and tirelessly. Joe and Christine you are our heroes and our guiding force! With my love,
Andi

11-21-2007, 07:57 PM

Joe and others,

I guess I missed what's happening and not unhappy that I did. Today we left Maine for New York for the holidays but before we left, I stopped at the post office to pick up mail. In my mail was a book sent to me by Stephanie "It's not about the hair" by Debra Jarvis. I hope I have that right, Stephanie, as I left the book in the car. I began it and finished on our trip down--ten hours, door to door. A lovely book by an oncology chaplain in Seattle who herself was diagnosed with breast cancer. It's a very positive book by a very positive woman and was given to me by another positive woman--thanks Stephanie. I plan to send it on to another woman and friend on the board (if she hasn't read it already) and will ask her to send it on to another when she finishes. Jarvis does briefly discuss the issue of blaming oneself and is of another view--to quote her, "stuff happens." If any of you need something positive to read for the holidays, I recommend her book highly. I do hope none of you leave the board and we can all remain dear friends. As I said to my husband just two days ago, I would be lost without all of you, as I really don't like talking about my fears and anxiety to the non-HER2 world. You understand, and that means so much to me, and I'm sure to all of us.

And Joe, as so many have said, we owe you and Christine a great debt. If I haven't said thank you before, thank you many times over.