What does this site mean to you?

StephN · 04-18-2010, 11:18 PM

Don't be shy.

Joe posted a sticky titled "We Need Your Help."

I think there is an exciting opportunity for the members here to think about and express what we individuals have gained by visiting and interacting here.

The operative words in Joe's message repeated below for me is "impact of our organization."

It was Christine's idea to get this up and running, but not everyone has had direct contact with her. We have had plenty of contact and interpersonal relationships with others here that would be important in giving the whole picture of what has been accomplished by this web site.

Finding so many others who care so much about total strangers brings out the inate good in people.

"Last year, we received a grant to put Christine's personal story and the impact of our organization into writing.

Our writer is looking for anecdotes about Christine and the HER2 Support Group to include in the book.

Please send to: ctaghdiri@yahoo.com

Thank you all,

Joe"

sarah · 04-19-2010, 08:08 AM

what does this site mean to me? a life line. The only site that can answer questions about HER2. It's my HER2 family and I'm extremely grateful that Joe and Christine created it. They have made my life better and brighter. I cannot find words enough to thank them.
And the community they have brought together is amazing, so knowledgeable and compassionate.
Thank you.
health and happiness
hugs and love
sarah

Margerie · 04-19-2010, 08:25 AM

Great people. Great discussion. Great opportunity to learn and be pro-active with your own Her 2 health. I thank Joe and Christine in my heart every time I check in here.

ElaineM · 04-19-2010, 10:02 AM

This site (community) is an excellent source of health education and a wonderful source of friendship with others who have some of the same health problems I have. Thanks Joe, Christine and her2support.org friends.

tricia keegan · 04-19-2010, 12:27 PM

I still have problems understanding a lot regarding my her2 dx, it's wonderful to come here and have it explained to me if I'm curious about something.
I also have never posted a thread for help that was'nt answered by many, this is a wonderful site and a caring community and while I may not get here every day, I look forward to checking in when I can

Thanks for posting this Steph!!!

SoCalGal · 04-19-2010, 07:16 PM

Joe once said that he and Christine feel that we are all guests in their living room. For me that statement best described the tone of Her2support.

When I was first diagnosed with metastatic breast cancer, I was lucky enough to stumble onto this site as part of my online research. Here I was able to connect with so many wise women and men, many who were already walking the path ahead of me.

I logged on every single night to talk to my new-found family. It was my lifeline, my proof that one COULD survive. Reporting on my treatment, my worries, side-effects and also seeking the sage advice of the board – asking questions about things I did not understand. I read through the clinical trial links posted, read ways to manage side effects, read questions to ask my doctor, noted out-of-state doctors to contact, plus got emotional support. We discussed topics our doctors wouldn’t touch, politics as they related to cancer & healthcare, cancer’s negative effect on our sex-lives, the toll on our families, our relationships, our concerns for quality of life, and endless support, which was really about how to have faith, grace and courage in this nightmare of a setting. I cannot even express how astonished I was at the information posted and exchanged by other members. It was so candid, generous and real.

Sometimes one can wait a week for information from the oncologist’s office. Here you can post a question, and feel assured that the smartest, brightest and most caring community members will respond within hours. Not just touchy-feely support, but IMPORTANT medical related information, when to go to the ER, when to insist upon a scan, and also the magic words to give you the fortitude to face the Gamma Knife facility in the morning, knowing that a halo had to be screwed into your head. After all, if someone in the her2 family can do it, you can do it, too!

Having an international network that functions as an extended family is a remarkable creation. Christine had an important vision. She is the ultimate warrior woman, Joe the ultimate supportive and dedicated husband. I thank Joe and Christine from the bottom of my heart for what they have created.
(Flori)

Sheila · 04-20-2010, 05:27 AM

Christine and Joe have created a lifeline for me...a place to go where someone will understand my fears, my joys, my good news and my bad news.

What started for me as an informational site, has become family....many of us have never met in person, and maybe never will, and yet we are a family , as close as many can be, we are support for each other, we are that shoulder to cry on, that leg to stand on, that arm to lean on, that hand to hold.

Christine gave us the ultimate gift....knowledge, love and support...the courage to trod on each day, to ask for help when we fall back or are weak, this gift is the Her2Support Group.

Thank you Joe and Christine, for you vision and this gift you have given us, my life has been forever changed not only by breast cancer, but by your creation of this family bond!

Brenda S · 04-20-2010, 07:42 AM

What does this site mean to me? It means more than my meager language skills can articulate adequately. I'll try.
This site means the following to me:
Support, solace, information, kindness, concern, camaraderie, fellowship, comfort, enlightenment, confidence, energy, strength, empathy, sympathy, HOPE, toughness, sharing................and so much more.

My husband sent this to me during the darker periods of "our" battle. It is worth a few moments of your time.
http://thegoodnessoflife.com/
Cheers,
Brenda

sarah · 04-20-2010, 11:03 AM

Thanks Brenda, I think "the goodness of life" exemplifies this site, its caring founders and members.
health and happiness
sarah

bejuce · 04-20-2010, 12:06 PM

A source of information like no other, a source of inspiration, a source of hope, a source of support, a source of spiritual connectedness with fellow breast cancer patients/victims/fighters/survivors, and an outpouring of love from newfound friends.

Thank you Joe and Christine for all that you do for us, and thank you everyone who posts your stories here.

tricia keegan · 04-20-2010, 04:03 PM

I sent my comments to the e mail address Joe provided who is doing the write up for this, had an acknowlegment earlier so would suggest everyone else send their comments there

Shobha · 04-21-2010, 10:20 AM

It was such a relief to find this site after I was diagnosed with Her2 BC. I share my worries, fears more freely here than even with my family since I do not want to burden them. This site helps me cope and be normal loving person to my family. This is very important to me.

I wait eagerly to read the latest medical research and clinical trial information every day. I am so grateful to Christine and Joe for providing us with this warm, knowledgeable and compassionate extended family.

-shobha

juanita · 04-25-2010, 08:33 PM

I wish I'd known about this site when i was first diagnosed and was going thru such hell with my first oncologist. I've learned alot since then and even though I'm 5 years out I would REALLY be lost without all of you!

chrisy · 04-26-2010, 09:24 AM

Oh, don't get me going! You know how I run off at the mouth, with tears streaming down my face.

When I was initially diagnosed with Her2+ stage IV breast cancer I knew little other than I was now living under a death sentence. I had great doctors who had told me that there was a lot of research going on for "your type of cancer" and that there were treatments that could work well, maybe for quite a while.

I was guided to other support groups and online resources and although I found tiny snippets of hope, these places were not, for me, so supportive - and frequently left me even more depressed and hopeless.

I stumbled onto the Her2support.org site via a link on Dr. Susan Love's website. Although I did not register or post for over 8 months, this site quickly became my lifeline.

At first, I mainly scoured for information - and Her2support.org became my gateway to the most current and exciting research about Her2+ cancer. What I valued most was that what was posted here was real, "credible" research - not just a bunch of people pooling their ignorance and bad attitudes. I didn't care that some of it was just in mice, or even in petri dishes - there were rays of hope that threatened to burst into sunny days and a future that I might live to see.

I was grateful for the people who shared these articles - like Lani, R.B., Becky and others - with just enough translation to english to excite my imagination. Who knew I would eventually become a person who would learn to use words like antiangiogenic and antibody drug conjugate in sentences and actually understand what I was saying? These people helped me bridge the chasm of my ignorance.

Later I began to engage more within the "support" areas of the forums - again, searching for hope in the people who like me were fighting advanced disease. I found hope, encouragement, and strength in what the people here shared. And always respect and appreciation for each other - which is not as common as you would think in online "support" groups! Her2support.org was the only place I ever felt safe enough to contribute - and actually it is still the only place I am registered and post. It was many months before I felt qualified to "say" anything - which was compounded by my circumstance of being a nightmare Stage 0 gone bad. But I even found others in a similar boat!

This is my family. I love Joe and Christine, and all of my brothers and sisters here. Especially those who are able to find the strength and courage to hang around long after they are cured.

I appreciate being allowed to feel welcomed among the newly diagnosed and soon to be cured majority - welcomed, not cast out into the "dying people only" groups. I love the friends I have met here and that we see each other as whole people who are living with/fighting a disease - not people who are defined strictly and exclusively by that circumstance.

Joe and Christine have opened their living room (albeit in cyberspace) to us - and it is a place of hope, respect, friendship, encouragement, laughter, love and - most especially - living.

Love and kisses to all...
chris

StephN · 04-26-2010, 01:23 PM

WOW - some really heartfelt replies here.

Does everyone who posted on this thread AGREE that their comments may be forwarded to the woman who is doing the book about Christine?

(Which prompted this thread in the first place.)

Thanks to those who sent their writing on to ctaghdiri@yahoo.com, the book author.

CourtneyL · 04-26-2010, 02:17 PM

I was all set to receive Whole Brain Radiation for brain mets last spring when I posted on this website and was given some incredible advice about the advantages of doing targeted radiation, such as Gamma Knife, and saving WBR for down the road should I ever need it.

As it turned out, Gamma Knife was all I needed to get me to NED in the head. I was spared the potentially horrible side effects associated with WBR.

I can not thank the ladies and gentlemen on this website enough for the invaluable advice and encouragement that they gave to me in my time of need.

I've also received so many good suggestions for tips on diet, nutrition, supplements, etc. I credit much of my health successes today to the information I received on this site.

Plus, knowing I am not alone as I wage war on this beast has made all the difference in the world. There is strength in numbers and together we can beat this beast.

Thank you, Christine and Joe.

krisvell · 04-26-2010, 04:42 PM

This HER2 site is truly a priceless gift. I too stumbled on this site after reading Christine's story on some Herceptin literature while getting one of my first chemo treatments.

I have learned to live my life thanks to the wonderful woman and men who share information and support everyone. It's my security blanket because I know no matter what happens (i.e. hoping for the best), I will get great support, advice and encouragement.

Logging onto this site every day is more important to me than checking my emails.

Thank you Christine and Joe -- from the bottom of my heart.

Kris.....

jhandley · 04-26-2010, 08:45 PM

This site provides the essential gap between the support I need from my family and friends and what I actually get.
It is the glue that holds lives together after our shattering diagnosis.

It provides the "healing of being heard" without the distractions of a physical presence.

It means hope, friendship, family and the will to go on fighting long enough to raise my daughter.

And many more things...to be continued

Jackie (down under)

MJo · 04-27-2010, 03:46 PM

The women and men on this site provided me with more support than my family, friends and co-workers did. The people around me felt so helpless. The women and men on this board know what to do and what to say.

Karen Wheel · 04-28-2010, 04:29 AM

This site is really been a lifeline for me too! Since I live in Italy and I have the issues with understanding what the HECK the doctors are saying (little lone if they speak slowly enough and in the vocabulary for a 3 year old!) as I feel lost most of the time here. The therapy seems to be the same and the care seems to be good (don't have any comparison as I was never sick ... NEVER in the US), so for me its a great way to connect with real people (IN ENGLISH!) who are really walking in the same shoes as I am.

I found that here I felt very much isolated as having breast cancer is not the same as having breast cancer with a Her2 added stress. Many people would say to me comments like - I know lots of people who survive breast cancer.... blah, blah, blah .... making me feel stupid for being scared and lost. I wanted (and still want to) yell at these people and say - yah, well, did they get flipping HER2????? Even if I would say it - people wouldn't understand. Here on this site --- we all get it. We understand the fears, the gravity and the seriousness of fighting this nasty beast.

All the fears of this cancer coming back seem to be common in all of us - and the strength and overall positive and supportive nature of everyone here is priceless!

Thank you again - all you sisters - and brothers (like the wise Rich, Paul, Robert and the late great Mighty Oak) for all you do to take the time to read, write and support in your positive thoughts and deeds for all of us who are fighting this.

It is something I also try to read and contribute to every day I have internet access! Thank you again for making this site available for all of us!!!!!!!!!!!!!!!