Has The Entire World Lost Its Respect For Others?
 

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

Thanksgiving
 

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!

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

Karen, did the link work for you???

Bonnie,

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

Karen

Thank you Joe and Christine
 

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!

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.

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

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

so many thanks
 

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

Joe and Christine
 

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.

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.

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.

What????
 

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.

Please !!
 

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

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

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

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

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.

ditto
 

This site gives me more support than all the rest of my support groups combined. Thankyou .......thankyou..thankyou Joe and Christine and everyone who has replied to my posts or posted info.

jackie (down under)

6.8 yr survivor 26 months NED after liver met

Joe and Christine, please know that almost 100% of her2 members are deeply in debt to you both for all the hard thankless work that you do for all of us. You definitely have the upmost respect from the majority of us and we are forever grateful. I don't know what happened but it must have been something so awful for you to get so upset. Please know how appreciated you are. I don't know many who would dedicate themselves to so many. You are one in a million for sure. So sorry this happened.

With endless gratitude,
Rina

Please allow me to add my appreciation to Joe and Christine for their hard and dedicated work. This group will be physically and emotionally lost without them.

As to the unfortunate event that upsetted so many of us, I believe none of the people had the intention of hurting anyone. When an argument got intensely hot, they just became out of control. We should forget and forgive what happened. The past will serve a good lesson to all of us that tolerance and respect should occupy a high level of priority in any discussions.

Thanks to all who posted or had the urge to post on the eve of Thanksgiving.

Dear Joe and Christine, thank you so much for all of the work you do to maintain this most important link to my sanity! I must have missed the post that you are talking about. I would be lost without this support group so I hope nothing happens to cause you to shut it down. Thank you from the bottom of my heart for all that you have done and, hopefully will continue, to do.

Dear Joe & Christine,
Thank you for your dedication to this website and for stepping in and helping us refocus our energy.

I am a member of a UK breast cancer site where I derive much comfort and support, as well as giving it.

However, it is here where I come to find out all the latest news on HER2. This I then give to my medics in the hope that they will take notice.

So thank you from me, too. I genuinely believe flaxseed is an important natural inhibitor of HER2+ cancer, and this I learnt here.

Mcgle (UK)

For Christine and Joe: thank you for all the energy you give to us, the HER2 Group. You, and all the HER2 women on this wonderful forum, help me to be stronger. I learn so much from this site on a medical standpoint and just as important, on a human standpoint. Joe, you are so right. Michka

Dear Joe and Christine:
I don't post often, but I do regularly read the posts.... I just want to say, I am so very happy to have found this place.. I want to add my thanks for such a place to ask, receive and get support. and advice from the great folks here..
The work you do is so very much appreciated...I thank you and Christine from the bottom of my heart.... please know that your work is appreciated...

I also would like to make a donation to the site.... I can"t get the link to work...On one of the posts, an address was mentioned.. where do I find that??? Could somebody help me.??? I guess I have chemo brain...???.

again, thanks so much for this site.. I have taken some of the posts to my Dr. and he sat there and read them .

Hope you have a Happy Thanksgiving
 

Dear Joe and Christine,

I am very thankful for this site. I think that people don't fully appreciate the market value of the services you donate. I donate to a cancer support charity in the UK and they mentioned in their recent mailing how much it costs per hour to keep their website up and it was quite expensive (wish I could find it now, but no such luck). And the great thing about this group is that there isn't the us/them divide that you get with some chatrooms where the organisation leaders, who may be charity professionals rather than cancer survivors or people living with cancer, don't always seem to understand what things are like for people with cancer.

I hope that you have a very nice Thanksgiving.

Best wishes,

Christine MH

I hope you have a nice Thanksgiving Day
 

Dear Joe and Christine,

I am sorry to hear that some people have been disrespectful.

Recently I received a mailing from a cancer charity I support in the UK and was shocked to learn how much it was costing them an hour to keep their website up. I had never really thought before about how much a website like this one costs to run. It made me really appreciate all that you do.

I guess the thing that I think is so great about this website is that it is run by people who have been directly affected by cancer. Charity professionals are great, but sometime they don't always understand where we are coming from. Also, that this website does so much to help defeat this type of breast cancer by publicising trials and new developments.

I hope that you have a great day with your family.

Thanks wholeheartedly to Joe & Christine
 

I think I know which thread Joe deleted. I replied to it before the comments fired up. Have not been able to follow the last couple of days, but it WAS getting beyond "polite discussion."

The empathy and civility of the members here has always been one of this site's hallmarks, and I am glad to see that we do not NEED monitoring as a matter of course. The fact that Joe can feel at liberty to go about his business and trust that what is taking place here is non-threatening to anyone, yet honest, is a testament to the members.

We all come from different places and backgrounds to arrive here at a commonality with a terrible disease. Naturally we all have opinions on most everything, and our own ultimate truths, which may or may not be open to change. The only change we should be thumping for is a CURE!

Joe and Christine
I have been a member of this group for over 4 years, and I have seen differences in opinions, ideas etc. It is OK to have our opinions, we are all unique, as is our breast cancer...what works for one, won't work for another...one is taken and yet another lives on....but in all of this, we must never forget the reason this board was started by Joe and Christine...to help each other....with respect, knowledge and genuine compassion. This board has been a lifeline to me, don't know where I'd be without it.
Thank you Joe and Christine ...you are a lifeline

Thank you Joe and christine, I don't post as often because of the remarks that are at times so very hurtful. And my husband suggested I drop out of this site because of it, but I have always been a believer in the goodness of all. Thank you for your concern and for taking a step toward ending the bitterness. Much love, Vickie

Joe and Christine, I'm so sorry for whatever happened, like most of the others, I'm glad I missed it. I wish that I could put into words what this site has done for me, I would be lost without it. I occasionally visit other boards but this is the Her2 site, there's nothing out there like it. I've learned so much and have been hugged and helped by so many. I pray that whatever happened will be the end of the nasty times. We all love you so much!
Hugs

Thank you, thank you, thank you! I've learned a lot from everyone here!

Thank you Joe and Christine.

Mary Jo

Where would I go?
 

Joe and Christine- I am sure you both must know that this board has "saved" so many women from the terror and fear that HER2 breast cancer can cause. I am a case in point. Without this board I would feel unarmed and ignorant of the knowledge I need to fight this never ending battle. I too, have tried the link to make a donation and been unsuccessful. I will try to find the address since someone mentioned it.
I would like to say "Thank you" from the bottom of my heart for allowing me to come to a place that can give me peace, love, knowledge, courage, and faith that we are going to beat this disease.
I don't know what thread you are speaking of, but I hope we can all remain calm, and focus on the purpose of this board.
Thank you again Joe and Christine for being there for all of us.
Happy Holidays to all,
Emelie

I, also, must have missed the post you are talking about...but I know that I would be LOST without this support group. Thank you, Joe and Christine, for all that you do. And thank you, Her2 Sisters for being here for me...and hopefully I am here for you because we all need each other!

Joe & Christine - I don't know what happen nor do I care to. However, I echo all replies, this is a great board and we are truly grateful for all the time and effort you put into this. Thank you 100 times over.

Mary

Please Do Not Say You Do Not Care...
 

I hasten to insert that there was much invaluable information on the vanquished thread that has been eliminated because of malice. That is not a victory, nor a reason to feel glad. Additionally, when a person's feelings have been trampled upon, though a few came to speak out for what is right and to remind those who chose to be vindictive and attack on a personal level -- that is also not a time to say *I don't care* or *I am glad I missed it*! HE WHO ALLOWS OPPRESSION SHARES THE CRIME. To look the other way, to avoid unpleasantness, is to contribute to the perpetuation of offensive behavior, not to rectify it! This site depends on the civil behavior and respectfulness of all who come to post here and those who come to glean insight. The loving support found here, in addition to the wealth of information and experience, is what makes *this* HER2 SUPPORT group so unique and vital to so many people trying to get a foothold. Let us not forget this fundamental attribute, as we dip in here for comfort and direction... We each bear responsibility for this continual fountain of understanding and knowledge generously shared by those willing to bear their Souls...
Andi