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 [email protected] . 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 [email protected] 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.

WOW! WOW! WOW! I am sorry Brian that you had to repeat the rules again. I will PM or email personal stuff that MIGHT offend someone....WOW, can't we just all get along and love one another? I tried to pm you but your box was full. Sincerely, Carol

Hi Carol- so so sorry to hear about the new primary. Hopefully the doctors will have a plan of attack for you to kill this beast once and for all for you. You are facing this new battle very very bravely.

What was your first treatment surgery and radiation? Any chemo then?

The reinstatement of the rules were really a bit harsh. OUCH. You didn't need to be reprimanded so strongly in your time of adversity!

Let us all not forget how very very vulnerable people are here in thier time of stress over thier illness.

Carol--I just wish you ALL the best--a lot of love and caring, and I know that, after your initial post, many will have also put you on their prayer lists!

Brenda x

Quote-"keep in mind that our words don't always come out exactly the way we meant them to, and occasional misunderstandings are possible even when no criticism is intended. This is especially true on the Internet where you can't see the person's face, look in their eyes, and hear their tone of voice."

Mmmmm

MisKate - you are off base. No one reprimanded Carol, and she and I have communicated by email in a private way about her situation. She was the first poster in the thread, and others posted (for the most part) in the same religious tone when they wanted to, as her original posting, they offered her prayers. That is all appropriate, and how it is supposed to work.

But clearly some people didn't even know that we had a rule about religion in postings, why, and how it came to be. So for their edification, I had to restate things. It had nothing to do with Carol. It had to do with Billy who stated he didn't know we had a rule about this. It is easier to copy and paste the rules again than try to explain everything in a typed message for the umpteenth time from scratch. Since that raised an eyebrow, here I am yet again explaining things.

I wish there didn't have to be any rules, but we tried that and it didn't work. We had people pitching herbal cures, cigars of all things, Jesus as the only way out of this, We had a Buddhist being told that as a non believer in Jesus she was going to go to hell, and so much more. The dialogs got personal and hurtful and they had to be deleted and people banned from posting. The world is not full of totally balanced people, who will always behave in a manner which does not hurt others physically or emotionally. Luckily for me I am not the only one that watches these things on the board, edits or deletes things, or bans individuals. You would be surprised at the amount of rubbish like cigarette promotions that end on the board overnight on a regular basis. Someone has to clean all that crap out. Someone has to the sheriff, and someone has to catch shit for having altered someone

So, to continue--I have just copied and pasted my post! Hope this can take Carol's post forward for Carol, and all other posters/supporters.


Carol--I just wish you ALL the best--a lot of love and caring, and I know that, after your initial post, many will have also put you on their prayer lists!

Brenda x

Carol,

Over the past 4 years as we have become not only members of the Club Nobody Wants to Join but friends and brothers and sisters in faith, I want you to know that we have shared well wishes, positive thoughts and prayers for each other and many we have known that have either specificially asked for our prayers or mentioned how important their faith was to them. I only mention prayer and provide Christian fellowship with those that clearly mention it before I do. For those that never mention it, I purposely do not mention it either.

I want you to know that I am praying fervently for you that you will be provided with His comfort and peace and that He will surround your entire circle of friends and family especially during these next very stressful days. Of course, you may email me or PM me if there is anything I can do for you.

As Marica so eloquently states, "May your God go with you". May I add, my our God be with you always and provide you with strength as He provides your medical team with the guidance and wisdom to determine the absolute best possible course of action and treatment for you.

YBIC,

Ed

Love you Carol and hope your appointment today went well.

A little back up for Brian: I've been here long enough to know what he's trying to express. So let's not shoot the messenger! Over the years there have been people on here that couldn't post without it being wrapped around what THEY believed in. All Brian is asking is please respond in kind with the poster. Carol obviously is a devout Christian, so we all feel free to respond in kind. Same with me.

So now let's carry on helping Carol and her new fight. Thanks for the update Brian.

Take care,
Minnie

Okay, now that is out there and hopefully settled, I will be having surgery on December 14th. My doctor, I absolutely love him, too by the way, will perform the surgery in the am and then leave in the evening for his preplanned trip to Wales. His associate will take care of me for the remainder of time in hospital which is looking to be about 2 weeks.....I have a petscan tomorrow, hoping nothing else shows up. The plan is to remove the scc of the left palate, take muscle from right arm to rebuild flap for left palate, they will have to split my jaw in order to get to the scc, it is very awkward in location, so they cannot get around that.....guess I will look like the Bride of Frankenstein for a while..whatever, I want the cancer out! Thanks for caring, friends.....Carol

Carol,

Now that you have your treatment plan, you should have a little peace of mind. Not knowing what is going to happen is certainly very stressful. I hope you get good results from your petscan tomorrow.

You will be in my thoughts through the coming days and weeks and you have my continued love and support.

Jerry

Carol, I know that it makes you feel better to have a game plan. Now just put it in His hands and let the doctors do their work.

The originator of this post, Carol, made it clear that she is a Christian. This post is a prime example of what Brian is talking about when he says that the method we've stuck to has worked. We should be very able to feel free to respond to a religious toned post with that same religious tone. I just noticed that it was Carol who started this post and now I'm stumped as to why anything was said at all! Now, if Carol hadn't mentioned God, I wouldn't either. That is the point Brian is trying to make................There shouldn't have been any issues from anyone concerning this post.

Minnie

Carol, as stated to you earlier, your doc is one of the best out there, and you could not be in better hands. Like others, I want you to know that you will be in my thoughts, and I wish you the best possible outcome. I have seen many people who have had this procedure done with the same surgery, and I would not feel like you are going to become "the bride of Frankenstein". It never ceases to amaze me after the initial swelling goes down how good people look. I know that it sounds like it is very radical, but the end results (besides joy of being free of the cancer) are esthetically not something that you should be concerned with. I wish you a rapid journey through this part of things, and a quick return to health.

Minnie there wasnt any issue with Carols post! Billy just happened to mention he wasnt aware of the rules about religion in posts in his reply to her.

Anyway Carol i wish you all the very best for what is going to be a difficult time,and lets hope that like Minnie you dont have to go through as bad a scenario as you think.

You are in my thoughts
love liz

Everyone --

My response that included Brian's comments on religion from September 2006 came because of Billy's statement that he was unaware of any rules about referencing religion in posting. I remembered Brian's post and thought it was relevant to repeat it. It certainly was not directed at Carol, and I apologize if anyone felt that it was. That absolutely was not my intention!

Carol --

That's great that you have a plan. You will be in my thoughts and prayers in the days and weeks ahead.

All the best,
Leslie

Carol,
I had the chin split and when you met me at the walk, did I look like the Bride of anyone but my husband???? Yeah, it's rough looking the first month or so, any invasive surgery is. BUT, before you know it the swelling and bruising goes down and you have to look hard to find a scar.

Don't fret on that part, trust me.

Love,
Minnie

..ahem..

Minnie, I believe you would now have to use "Bride of T-Dog" since we all know now anyway!! I guess the cat's (I mean dog's) out of the bag now.

Carol, best wishes always!

Ed

Carol,


1st off please know that I am thinking off you and wishiing you everything I have that you will again over come this disease !! And as every one has told me , when I went through my surgery and had all my fears..Beauty is on the inside, I have never seen your face Carol, but from your words I can tell you are a beautiful person.

And as far as all this religious talk. I am not religious either way and I don't take offense either. I don't believe strongly or NOT believe , I am not sure . But I def can see just from this thread the controversy it can cause when it is not even intended to. I don't think that Brian would ever intend to cause controversy in such a tender situation and I think we all just want the BEST for carol.

Shar

Minnie, when I met you, you looked beautiful, oh my gosh, I did not realize you had the chin split...thanks so much for sharing that with me! I had the petscan and catscan today...hoping everything is still as it was last night, with me having the surgery on the soft palete 12/14 and getting rid of the BEAST once again!!!Thank you alll so much for your good wishes, they mean a lot! Take Care......Carol

Again, thank you everyone.....I love all of you!!!!!Carol

Ed.......you crack me up! Yes, I AM the Bride of T-Dawg for sure, and damned proud of it!!


Carol, if you go to the section of the site that is "Oral Cancer Events" and click on past events, you can see pictures of the walk. You can see how my face looked after the chin split, and that was 2 years after the surgery. But, trust me, it looks pretty good a few months after surgery.

Love,
Minnie

Carol,

Sorry to hear about the recurrence. Thinking of you. We all will be thinking of you as you start your fight. We are here for you.

Take care,
Diane

Minnie, I will check it out, thanks and Diane and Shar, thank you for caring......and Ed you crack me up too!!!!! Love, Carol

Carol...I posted on another of your threads before I read this one. It sounds to me like they feel that they can get all of this tumor wihtout resorting to radiation. YAY! The surgery won't be a walk in the park, but it will have a start, and a finish, and with some yukky days in between, you are going to be fine. I am so sorry that you have to undergo this big surgery, but hang onto Minnie's experience that you WILL get over it and after this interlude, be allowed to move on through your life.

With the flap to close the palatal opening, in time you should be just fine. I am sorry you have to do it, but I am relieved to hear that it seems to be confined and removeable.

I look forward to hearing more about the treatment plans, and the results of the PET scan, and when your busy time comes, please know that we won't stop thinking about you until you feel like returning to the computer.

XO--Colleen

Hi Colleen, I haven't heard anything about the Petscan yet, I believe my surgeon was in surgery all day Friday, I am really hoping it is confined and they can go on with the surgery on the 14th as planned.......How are you doing??????Love, Carol

Carol I am just now doing some catch up...I cannot believe you are having to go through all this stuff again!
Please know on the 14th, or whenever, there will be some big old positive vibes coming your way.

And Ed has it right .. Your God will go with you!
So will we..
Love Marica