Guys and girls I just want to do something we don't say often enough, thank you for being here.

The first thing someone does when they even suspect they have cancer is to hit Google. All they want to know is "will this kill me" and they enter a sea of confusing statistics and usually read things way out of context for the type of cancer they might have.

Then comes the diagnosis and the bombardment of new information and concepts totally foreign to the average person. Words like "constipation" "nausea" are about to take on a whole new definition, and new words like "dysphagia" and "PEG" become new staples in the vocabulary.

The lucky ones find their way here. They are treated with respect, no matter how silly their newbie questions might sound to the veterans. In an internet full of trolls, haters and misinformation, they find trust, empathy and sound, heartfelt advice. Its not an easy place to be. For the veterans to constantly revisit their own pain is a difficult cross to bear. Some find it too depressing to stay, and I can understand that.

I want to make a special mention about ChristineB. I didn't want to name anybody, because I'd miss out on many deserving people. But to me, Christine is an absolute star. We have many mothers in the group but I consider Christine to be the mama bear. Nothing gets past the mama bear. If you're not having your 2500 calories and 48oz of water (those are MINIMUMS people!) you will hear from the mama bear. If you don't add a signature, or post something in the wrong board (heaven forbid the General Board!) you will hear from the mama bear. Her daunting signature shows she has earned her stripes and when she tells you something its like hearing it from your own mother. You had better listen because she has been through it all and she is telling you because she loves you, and its for your own good, especially when its not what you want to hear. I am so grateful she is here.

Now I hope you all get to read this before the mama bear swipes this post off to some obscure board down the bottom. I just want to thank all of you, the founders, admins, old timers and other contributors. You make this place a warm place to visit when the world is very small and dark.

Bless you all, your caregivers and your medical teams.

Ditto that and all who contribute here. This IS a very special place and we all wish more would find it early in their encounter with OCC.

Thanks OCF!

Ditto on Everything. I love all of you and all of your help. People say "social media and modern technology has ruined lives." But in this instance it has definitely saved my life! Right when I heard about my brothers diagnosis I just wanted to crawl in bed and never wake up. But then I met all of you wonderful people with such wonderdul stories. I am so glad I found this forum.

This IS a special place and all the more so with our own "Mama Bear"! Christine does a super human job of watching out for everyone who comes here. I will always bless the day and the young man I met in the Radiation Tx waiting room who approached me after my son was summoned for his Rad Tx, This young man with the sunburned look on one side of his face said to me: "Go to Oral Cancer Foundation Dot Org". And then he left for his own Rad Tx. That was the beginning of saving my son's life and my eternal gratitude that we have this place to come to any time of day or night.

Awww, Dave you just made my whole day

You are right, I can be tough with following the rules and regulations. Im here for the greater good to help sick patients and their caregivers to avoid the pitfalls of the horrendous treatments we go thru. Not everyone always agrees with my methods but I always have OCF members best interests in mind with every single thing I do. This doesnt always make me new friends but I will always be honest and fair with how I treat everyone. I really do care about every single person affiliated with this board and hope for the very best possible outcome for everyone.

Thank you so much for taking the time to say thanks. Its really not necessary but it is so nice to know Im appreciated. I really am only a small part of this forum. We are all in this together and it takes every single one of us to help others.

Have a great day

Fabulous Board. Fabulous people.
I give this forums web address to everyone I come across and in other online forums too - none of them compare.
This forum has kept me sane.
Tammy

I agree with all above and also extend a special thank you to Christine.

6 years ago, during the diagnosis phase, I found this web site. I cried while telling a close friend about the difficult information and situations I was reading about, she suggested that I stop reading. I could not stop and my instincts were correct. I gained knowledge and support here that could not be found elsewhere.

Lottie

I can't thank this forum enough. Here's to Christine too, and everyone that is in the forum. I was absolutely terrified when we found out about our cancer. I could not stop crying. I am so very grateful that I found Brian Hill and this forum. I became educated so quickly that the fear has eased and I have the strength and courage to get through this. We are so not alone, it helps to know that.

I really don't know what I would have done without the OCF.

Thanks again and Hugs to all of you!

Great post. I agree % 120! This place has helped me sooooo much,

ChristineB and everyone who has given support here on the forum, you have my heartfelt gratitude.

Great post, Dave!

I just feel so grateful that I have been a part of this community.

I hope to give back what I have so generously been given.

Thank you to all of you for all that you have done for me and continue to do each day for the group.

Brian Hill, you are an inspiration to us all and I know that I am not alone when I say "thank you" for starting The Oral Cancer Foundation and continuing to make it a pillar in the OHANC community.

Love in OCF,
Kerri

Would just like to say thank you too , I visit you all everyday, I feel like something is missing if I don't log in. My local GP asks me where I get my information from as I learn far more here from my friends then anywhere else. Having 3 month checks now with the consultant but feel safe here inbetween visits. Finished my treatment 12 months ago ..... Some very dark times , but you saw me through.
Thank you all x

I too would like to add my thanks to ALL of you that come here routinely to help others. OCF works hard in ways that most people do not hear much about, I am in the halls of the NIH and the NCI with regularity lobbying for various important trials to get funding, arguing with members of Congress and the Senate to see that funding for NIH/NCI does not get cut further, after several years of cutbacks, and the thankless task of working with for profit insurance companies to try to get more coverage of restorations that they do not wish to pay for. I sit on two NCI oversight committees, one in the very exciting area of immuotheraputics in head and neck cancers. I have been asked to sit on a third, which I will have to say yes or no to this coming week, which is a very early funding approval committee, that decides what moves forward with funding in head and neck and what does not. Because of the huge extra workload these impose on me, and my already stretched time for OCF other obligations, I am still weighing adding another thing to my workload. But it is a privilege to be asked, and it says something about OCF's reputation as much as my own. There is also the writing of tons of articles for the public, and as a being a respected source of vetted information which is often quoted in articles, and proofing many journalists writings from public media for accuracy before they put them out in the world. We don't hoop and holler much about this work, but it is a huge and necessary part of OCF's mission and obligation to the community of people we serve, let alone the American public that gets far too much bad information about HPV and our disease.

But when you look at OCF and what it has become over the years, the crown jewel in the organization is this support group. Over 15 years it has seen many come and go with 11,000 registered members. But literally hundreds of thousands have visited and read the boards without signing up and are not reflected in that number. You can see them in the wings at any time by looking at the "whose on line" link, and view all the people at any given moment from around the world that are reading your writings, your stories of hope and pain, and loss for sure; but also the stories of success, healing and love. We have had many come and go, some drift away as they wish to put this disease experience out of their minds and get on with life� but others, a very special few, have been here for years to see the path of those behind them made just a bit easier. That a fear is appeased, that an uncertainty is put to rest. There are many, but without a doubt Christine - who diligently each day cleans off the spammers, and rides herd on those that might be less than polite, is always there to welcome the new, and with her many years of learning about the disease, aid those in trouble. That you all call her out for her dedication pleases me, she certainly deserves it.

But newbie or old timer, you are all OCF family. We share each others pain or happiness at the end of a journey. We all understand what bonds us to each other in a way that outsiders cannot understand or experience. I just wanted to thank you all for giving of yourselves to make this a community that is safe, knowledgable, caring, and gives without conditions for that concern for others. You are all so remarkable.

To give you an idea what you have created, last month the head and neck staff at Johns Hopkins designated the OCF support group the only one that they would recommend to all their patients. While they have once a month meetings at the clinic, they recognize the need for additional support, and after review of many years of postings, they feel comfortable that OCF is a venue that they can trust to be free from misinformation, and because of its anonymous nature, safe for their patients and their families. Congratulations. You all built this.

Thank you for your hard work and sacrifice, Brian, for starting the group and persevering through the years. Wishing you and your wife and very Merry Christmas and a great New Year.

Now, I think I can give myself a little pat on the back too

Wow, Brian. I have tears in my eyes and feel a sense of pride to be part of such an exceptional group of individuals.

I am so happy to learn of the additional congressional and lobbying work that you have been doing for OCF. I think it's safe to say that we are all grateful for your hard work and the credibility that you and others in OCF have built in the medical and political communities.

It must be a difficult decision whether or not to take on the additional committee. It sounds like an important opportunity that might give us a hand up the great wall of lobbying efforts that we must climb. I hope that you can peacefully come to the right decision for YOU. Your health and well-being are just as important as the efforts you and many others put forth in OCF.

These are exciting times in cancer research with better treatment techniques and higher cure rates on the horizon!

Best wishes! We all love and appreciate you more than you know!

Love in OCF,
Kerri

We don't often hear about all the "behind the scenes" work and efforts that go in to keeping OCF constantly improving and becoming the ultimate "go to" place for information and the latest in oral cancer research. That you, Brian - have been asked to sit on even a third committee is indeed an honor and it is not surprising in view of all that you do in sharing your knowledge not only with all of us here, but with the various organizations and entities that ask you to share even more with them. I would like to echo what Kerri has said and hope that whatever decision you make is the best one for YOU. We all care about your health and well-being and all that you do.

I don't think an online support forum can really be effective without a ChristineB poster (or multiple such posters). She is quite simply - amazing! She is knowledgeable, compassionate, strong, resilient and available.

Thanks to Dave for giving voice to what makes this forum so special and for his shout out to ChristineB.

Sophie H.

Christine has truly given my advice when I need it most. While my mother is so sick and in so much pain Christine advised me on how to handle the pain meds and making sure the calorie intake was big enough.

Thanks Christine you are a blessing.
Heidi

I have been a "lurker" these last months and posted very little, but I realize how much I owe to all of you for what you do everyday--Brian, Christine, David.....Thank You.