Hi, not sure I am doing this correctly. I,like Minnie, get so upset reading about people like myself who had come so far only to get hit with this dreaded disease again....My wish is not to upset anyone, only to get the support I have gotten for so long from this board. Selfish, I know.
Well, they kind of switched things up on me, today is blood work, tomorrow meet with my surgeon, thursday Petscan.....I will post when I find out what my surgeon plans on doing. I know he wanted to speak to my oncologist because I believe I have had the max dose of radiation first time around. That was for the cancer in my tongue and two lymph nodes. This new second primary is straight back on the soft palete and in a very awkward spot....so we shall see......Thank you for all being so supportive and I know that we are not supposed to mention religion on here, but I have a strong faith in God and welcome all prayers! Thank you, Love, Carol
xoxoxooxox

Carol repost this on the recurrance board the you dont need to worry about upsetting anyone not that you have i am sure,but people have the choice to read or not read the recurrance board.
You will still get all the help and support you nedd and will feel more relaxed about posting.

My prayers will be with you and keep strong sweetheart

love liz

Dear Carol

You have given so much to others on this board, now it is your turn to receive the love and support you need and deserve. It must be devastating for you to be diagnosed again but here you are thinking of others.

I am thinking of you and sending positive energy to Baltimore. Let us know how you are feeling.

With lots of love from Helen

Thank you my dear Helen....I see the surgeons tomorrow and get a petscan Thursday...Love, Carol

Good luck to you Carol and know that God is with you.

I do have a question though. Since when are we not supposed to mention religion on here?

Awhile back I prayed for someone and I believe it was deleted. I didnt say anything because I didnt know for sure. I am proud to be a christian and am proud to spread Gods holy name.

Billy

God bless you, Carol! Our prayers are certainly with you during this trying time. I, too, am a Christian and it is 'second nature' for me to make a 'religious' statement. One of my messages was deleted, and when I questioned the reason, I was told by one of the founders that we should not offer our prayers unless the writer has specifically requested it; therefore, I have to be careful not to offend anyone!

I understand OCF's reasons for this rule, and certainly would not intentionally offend any writer; it's just natural for me to look to God for answers and His assurance.

Carol: Do keep us informed as to your progress!

Lois & Buzz in NC

Here are Brian's comments on religion in postings, from September 2006. This came in response to someone who offered a phrase invoking God that was meant to comfort the person who started the thread (and who had said nothing about a belief in God):

[quote]Without wishing to offend you, there is a reason that in the agreement to use the boards we have rules regarding discussion of religion. The rule is basic -- if the original poster did not reference God, Buddha, Mohammed or use any other reference to religion, such as "your prayers for me would be appreciated," the following posters are obligated to stay away from religious references. You haven't said anything offensive here, but the rules also exist because the original poster's feelings related to a supreme being, if any, may not coincide with the particular one that you reference. We have atheists, Jews, Buddhists, Hindus, etc. etc., and others represented here on the forum.

Lastly, several posters here have in the past made similar statements related to "God" not giving you anything that he will not also give you the strength, means, etc. to deal with mentally or physically. Unfortunately we have had too many people who post on these boards die from this disease, friends to us all. I think that in their cases any God referenced clearly gave them more than they could handle. It's a nice-sounding platitude that does not always apply. I am glad that you find strength in it, but perhaps the comment is not for everyone.

Please do not be offended by all this, I wanted you to hear it from me, before you got it from someone else, hopefully in a manner which does not offend you, but aids you in understanding why these points are made in the sign-in agreement. We all know that you only had good intentions in your heart.
[/quote]-- Leslie

My understanding is it is fine to state an offer of prayer if the person you are posting to has made it clear they are OK with that but not otherwise. Of course, no one can stop anyone from praying privately for whoever they wish--it's just a matter of allowing people to have thier own preferences respected in public conversation, which I strongly support.

Carol, since you have made clear you welcome prayers, I just want to tell you that you're in mine. Come here for whatever support you need and don't worry about scaring other people.

Nelie

Here are the rules that everyone who posts on the forums agrees to before they are allowed to post the first time. If they do not comply with them, usually it is a simple mistake or oversight, and often somene sends them an email to try and get things straightened out. We have had people who insist on overstepping the rules...again and again. When it happens several times it just gets easier to delete posts which do not follow the guidelines. The forums are not a democracy. The rules have evolved over six years, and changed usually when something causes outright verbal conflicts, and we like to try to head that kind of thing off at the pass.

As long time posters can tell you, we have had a variety of people be banned from the boards over the years. So for those of you who have forgotten what you agreed to here they are. The issue of religion has too often been a hot topic. Because of that we have included it in our rules. We didn't start out this way, but without going into things in detail, we have had our fair share of religious arguments. It is a subject which is personal and not everyone agrees on many aspect of it. It is therefore something that we do not encourage discussions of. There are other boards on the web that if you wish to discuss your religious beliefs they are designed just for that, even some related to diseases.

General rules of conduct for the OCF forum. FAILURE TO ABIDE BY THESE WILL CAUSE YOU TO BE BANNED FROM THE BOARDS.

While this is a public forum, use of this message board is a privilege, not a right. OCF, for any reason and without explanation, may ban a particular user or remove any posting at its discretion.

We want The OCF Survivor/Patient Forum to be a place where people are free to express their concerns, and share information and support. But we also want the lists to be SPAM-FREE, to stay within the bounds of the law, and to be civil. We also want to protect your privacy to the degree we can. So we do need a few rules. If you have any doubt about whether a posting would break the rules, please write to us at OCF before you post!

* Commercial Postings are STRICTLY PROHIBITED
* The lists are for Patients, Their Supporters, and Allied Professionals
* Respect Copyright
* Don't Post Chain Letters, Virus Warnings, or Other Off Topic Material
* Be Civil
* Respect Religious and Political Diversity
* Do not advocate for unproven cancer cures or treatments. (More on this below.)
* You may NOT put a link in your signature block.

Two Important Rules

We put these two up front so you cannot miss them - please read!

RULE #1:

Commercial postings are STRICTLY PROHIBITED

If you have something to sell, you are very definitely in the wrong place. Anyone posting advertisements to this list will be deleted immediately and without warning. In addition, we may request that your ISP terminate your account for willful abuse, and if we think you are making unsupported claims of a cancer cure we may register a complaint with both the Federal Trade Commission, and the Food and Drug Administration. We are very serious about this.

RULE #2:

The OCF Forum is for patients, their supporters, and allied professionals

The forum is primarily for cancer patients, their supporters and loved ones, and health professionals who wish to lend their support and knowledge. If you are posting to the forum for any other purpose, please contact the foundation PRIOR TO POSTING ANY MESSAGE.

This includes people who want to post a survey or questionnaire of any sort, who want to post an announcement for a charity, or who wish to archive or redistribute the contents of any posting on the message board. We also request that anyone observing our list for research purposes contact us. Attorneys researching cases, or looking for clients are not permitted on the OCF forum. Anyone else who is not a cancer patient, supporter, or health professional should contact us at info@oralcancerfoundation.org . Requests will be considered on a case-by-case basis.

Things which are always OK to post include:

* Anything you write yourself, including a summary of another's copyrighted work.
* The URL of a page on the Internet (post the URL, not the content of the page!), after checking with OCF. AGAIN - Please check with OCF prior to this. YOU MAY NOT POST URL's to alternative cures, religious sites, or other cancer sites which we have not reviewed for accuracy and appropriateness to this forum. For all of its good, the web has a great deal of misinformation, outdated information, and outright wrong or deceptive information on it. We wish to protect our readers by reviewing other site's that you may wish to refer people to. This requirement does not apply to US government sites like the NCI, or the American Cancer Society sites.

* A reference to any paper in the medical literature.
* Quoting a message someone else posted to the list.
* Anything which you have permission of the copyright holder to post.
* Medline abstracts


Please note that there are tons of bogus cancer cure claims, herbal remedies without documented proof of efficacy, and treatment centers in foreign countries trying to sell hope, that have no proven clinical benefit. If you are a proponent of these ideas and places -DO NOT BRING THEM UP ON THIS MESSAGE BOARD. OCF is dedicated to the discussion of proven treatment modalities, and adjunctive (not alternative) therapies to treat side effects. FAILURE TO ABIDE BY THIS RULE WILL GET YOUR URL BANNED FROM THE BOARD. This is not an unrestricted open forum or democracy. We regulate what is posted here, and unsubstantiated treatments with no peer-reviewed published support in science are not welcome. Please choose a different message board if you are interested in discussing these kinds of things. A good rule of thumb is that if it has been put on the quack watch site (www.quackwatch.com) it should not be discussed here.


Things which MAY be OK to post (and to which OCF usually won't object) include:

* Short quotations from copyrighted material to illustrate a point.
* Press releases or other material clearly intended to be distributed - but remember advertising is not allowed! Only post PR material if you have absolutely no interest or involvement, and are completely sure it's relevant! For the most part news releases from companies about the results of a drugs efficacy in clinical trials etc. should be posted to the OCF oral cancer in the news section. Please forward these types of things to OCF at info@oralcancerfoundation.org for our review and inclusion in the news section.

Things which are NOT OK to post without permission include:

* News articles and other copyrighted material from web sites, newspapers, and the like, except for small CREDITED EXCERPTS.
* Private correspondence

Rule #3

If you are unsure of your facts say so. If it is an opinion say so. If it is your personal experience say so. There are few absolutes in the world of cancer. Do not post anything that might be considered such. Try to qualify your statements and opinions.

Do not speak in absolutes unless you are completely certain that the information is correct. Following wrong advice or misinformation can hurt people. You have a responsibility to those who read your posts, and you must be careful to do no harm, even in your attempt to assist others. Speak from your own personal experience, and identify it as such. This way others realize that what worked for you may or may not work for them. If you are a doctor please do not identify yourself as such on the boards. We do not wish to have any reader construe your comments to constitute medical advice. Clearly without personal examination and the revelation of all the facts, none of us can, without reasonable doubt, tell another what is best for them over the Internet, regardless of our knowledge, or expertise in any given subject matter.

RULE #4:

Don't Post Chain Letters, Virus Warnings, or Other Off Topic Material

By a chain letter we refer to any message which asks you to forward it on to others. Internet messages like this acquire a life of their own even though it turns out they are usually hoaxes or scams. Typical examples include warnings about computer viruses, or claims that you can help a charity by going to a certain web site. Even in the rare case where one of these letters is actually accurate, they are off topic. So before you forward a chain letter message on to the list, stop and think:
* Is this on topic?
* Have I checked to be sure it's accurate?

Some places where you can check on the status of various hoaxes and virus warnings are:

Break The Chain is an anti-chain letter site with good advice on recognizing e-mail chain letters, and a searchable database of known chain letters. The site's author will also check-out possible chain letters for you if after researching you don't find anything definitive.

Computer Virus Hoax Page from Symantec Corporation. Symantec is one of the major anti-virus companies, and if there is a real virus, you will certainly find information on it in their Virus Encyclopedia

VMyths Virus Myths Page - a bit commercial but lots of info

Hoax Busters is a comprehensive site which covers myths, chain letters, fake virus warnings, and much more.

Urbanlegends.com - covers various other stories you might find floating around on the net.

Finally you can always go to a high quality search engine such as Google, and type in a key phrase from the chain letter you got. You'll almost always get telling results.

RULE #5:

Be Civil

Fortunately we have had very little in the way of personal antagonism on our forum. At the same time, disagreements and occasional friction are inevitable. It's perfectly OK to disagree with someone, but it's important to keep the tone civil. No verbal wars! If you writing an angry post, stop and ask yourself if you could make your point in a calm way before you press

Those of you who have had posts deleted because of faith-based comments I hope now understand why. There is a lot of diversity here, and some of the really strong science posters from a couple of years ago, left the boards because they became too religious in the postings. That hurt the quality of some of the information on the boards. Were I a person of absolutes, I would prefer that those of you who wish to pronounce your love of a God, or are proud to be a person who is spreading God's holy name etc. kept it to emails the person, PM's to the person, etc.... it need not be done on the open forums. But the first poster rule seems to work well if people adhere to it. This way those who are not religious, or like me prefer to keep my religion a personal thing, are not involved. It's really about keeping the boards on topic, preventing disputes, the inadvertent offending of people, etc. I would be just as adamant about people who took an anti-religious position openly in their posts. That is equally lacking in tolerance of others viewpoints.

These boards are to exchange helpful information, and when possible emotional support. I personally appreciate when someone offers me THEIR emotional support and wishes for my cure, wellness, inner strength, etc. and offers to talk, share their strength with me, hold my hand when it gets too tough, vs. when they tell me that God will give me that strength. In the first example they have told me THEY really care about me. Whether God (any god or diety) cares or not, is going to intervene or not, is an issue that is between me and my God, and relfects my own personal belief system. Someone else's opinion of what He/She/It will do is of little interest to me. I already have my opinions and answers in that arena, I do not need it interpreted by some other human being, and stated to me (inserting their unique perspective, or platitude), nor do I find this as emotionally careing as when they tell me they personally care.

As to the fact that our society has become one of sound bites in lieu of thoughtful discourse; True articulated compassion resonates with me. Bumper sticker slogans about any devine (one that I may or may not belive in) being don't do it for me.