Please help me out here. I'm working on a project/puzzle, one piece of which would be to know how posters found the OCF forum.
I'm primarily interested in three things:

1. The "HOW" : was it a Google search, a Bing search, a link from an article, a friend, happenstance, nurse's recommendation,

2. How often do you use the OCF main website and what for

3. Is this OCF forum a virtual support group for you and do you have a "meat world" group.

I'll start the ball rolling and hope to have an avalanche of replies here

1. Google result
2. Rarely, but more lately. Primarily to insert here in the forum as "authority" or an extended explanation to a poster.
3. YES, NO.

Now is the chance for all the posters who read rather than post to chime in with zero chance of hurting anyone's feelings accidentally, zero risk of being "corrected", zero possibility of suffering any of the slings and arrows of outrageous posters and a 100% chance of helping me
Keep the Faith
Charm

Hi, Charm,

This is a good idea. I have often wondered how others found this site, too.

1. I came to this site late in the game after spending hours researching Clark's healing issues. Google.

2. Main website once or twice a month mostly for the news, or to confirm a statement I've read.

3. This is it, no other support group.

Anita

1. I believe I used the Google. Although to be fair, this site was listed on a page in the original printed material my RO gave me and that I didn't follow up on at the time.

2. Rarely, and when so for research purposes.

3. Yes, Yes.

1. Oncolink - U of P's website
2. Rarely
3. Yes/No

Take care,
Eileen

1. Google

2. Rarely

3. Yes,No

1. Through friend Gabe who recommended it and helped me sign up
2. weekly to check the news
3. don't know what "meat world" is so can't answer. However, suspect my answer is - this forum is my only means of support other than ranting to Gabe (?meat world)

I will also add that I use the forums to uncover needs I didn't know about so I can go into battle with doctors who have cut us loose and seem uninterested in managing ongoing issues and late toxic effects

1. Back in the day, Brian e mailed me from another cancer site and told me to check his site out.

2. Usually twice a day, sometimes more depending on a poster's needs. Try to help people and help Brian manage this site.

3. I didn't find this site until 3 weeks post Tx but at first I still found it plenty helpful and it was my only source of help.

1. I "think" I was just typing in Tonsil Cancer on Google and found the forum.
2. Just occasionally for research
3. This Forum is almost the FIRST thing I go to when I get on the computer each day. I have learned so much from others, and really glad I found it. I haven't a clue as to what a "meat world" group is, so No to that

I think Charm meant MEET group.

BRH - I thin charm meant any human face to face group

Duh, how funny. I thought, and thought about a "meat" group and came up with some dillies Being a retired technical writer, I should have figured it out myself, but thanks, David.
julieann

1. probably Google....doing a search for info after I got "the" news.
2. Not as much as I used to, couple of times a month to see whats going on.
3. Yes, and no.

1. Google
2. A bunch when first diagnosed, occasionally now
3. yes, no

I Googled Tongue Cancer.
First place I come to in the morning last place at night.
If someone asks about Tongue Cancer I give an opinion.
Yes, No.

DavidCPA: I love you like a brother but c'mon this is the 21st Century. "Meat World" is the world outside the internet
Meat world - Urban dictionary

It is a synonym for the internet acronym IRL - In the Real world. I'm a big Science fiction fan and in the cyberpunk subgenre, meat world is used dismissively by Artifical Intelligences to describe what we call IRL.

But credit for an excellent guess - and I won't even make a snide remark about the Freudian implications of you proposing a homophone [ a word that is spelled differently but sounds the same Homophone wiki

Do you try and correct your wife too? I thought we had agreed that in both cases, one is always better off humoring us both.

Whew, I feel better now. I've have been so empathic and nice in my recent posts that I just had to be snarky with someone who can take a joke.
You are the best DavidCPA
Charm

Well, I'm sure glad that Davidcpa enlightened us. I was wondering about what "Meat groups were - I thought maybe this was some new "young people" term that I had not caught up with yet. Now on to the topic at hand:

1) I didn't find out about OCF until my son had already started Rad Tx when a delightful young man also going thru Rad in the waiting room started talking to my son and me and told us about OCF. (I really think waiting rooms everywhere should have OCF pamphlets)

2) At present time, two or three times per day, mainly to:
A) offer whatever help or encouragement I can based on my experience as a caregiver.
B) Get the best and latest research information.
C) Laugh and let a smile bubble up inside of me when one of the "old timers" allows us to see the funny side of things.

2a) When my son was in the throes of Radiation and surviving SCC, I was on this site almost constantly every single day! It was what kept me going and kept my son surviving.

3) I don't have a "Meet World" group, just this Virtual Group and neither my son nor I had a Meet World group when he was in treatment (almost 5 years ago). Although there were opportunities at the hospital because we saw little signs advertising "real people" groups like "Laughter Therapy" and I tried really hard to get my son to go but he just didn't feel like laughing and I couldn't go and laugh without him. Translation of the preceding: YES, NO (Sorry, my right brain likes to give details).

1.Through J from a OC survivor with whom J's ENT put him in contact.

2. When looking for current or past news items. It is pre-sifted by Brian for relevance and accuracy. Every week or so. But, on the forum usually once a day. To check on folks--see how things are going for everyone. Helps me prepare/understand/know more.

3. Yes, No

ps. I got (and liked) the reference immediately. Good analysis and advice from Charm, as always. @ Charm: I've noticed your posts and was wondering what was up. I was starting to worry. I'm so glad you are back! Like Billy Joel would say, "Don't go changin'...".

I also googled oral cancer and found you. I wish I had found this site when I was being treated, but it was after I had already gone back to work. I usually check it out several times a week, and more often, now that I have retired from my job. This is my only cancer support group, but I frequently talk with another oral cancer patient who was diagnosed a couple of months after I was. I reccomended this site to her, but not certain if she has checked it out.

Google about 11 months after diagnoses

Often, news , current info check facts etc...it originally gave me my education

Yes, no...but I've been helping local cancer patients through their journeys, I seem to be the "cancer" guy in my little world so I get hit up for information all the time.

Since the comment about literature in treatment facilities came up.

We have posted here many times asking for people, when making a trip to their treatment centers, to hand carry post cards we have with info on the back about how to find the forum for support and leave them with the check desk in radiation and in particular with the social services staff. [email protected] will send them to anyone who offers to help, and sends them in lots of hundred or more.

If we just mail them to an unknown person in the H&N department, they likely end up in the mail room round file. So here is the ask again. Help those behind you to find us. email Jamie. She'll send a freebee along with your request most of the time�..

Some like Malka even after the end of treatments, have turned this into an every quarter go back to her facility pilgrimage, and it has made a difference. Little effort - HUGE impact on another person.

Good thread and thanks for my name in print Karen (klo)
One of the first to befriend me were fellow Aussies aussieh (Helen) and Tizz (Meredith) and we have met up on a few occasions and hopefully will do for years to come.
Unfortunately I am one of those who found this site too late (via Google) to ask the questions re my treatment so I went in to that blind which may not have been a bad thing in hind sight and 4 � years later.
Due to the �so many hours in the day� (may have more next week after being made redundant from my job of 33 years) I try help the Aussies even emailing those that register but have not posted as yet to encourage them to post.
That does not mean that I do not follow so many of my friends in the US, UK and Canada. (e.g. see every post from ChristineB)
Brian,
How can we get those post cards you mention in other countries other than the US? I am still going to my 6 month visits to my local CCC in Sydney?
Gabriele

1.Google when searching for oral cancer
2.Daily at the moment - but I only was diagnosed on 13/6/2011.Expect this to change following surgery.However, I do anticipate frequent use post-op.I've found this site the most useful out there - mainly as it has a multitude of current, anecdotal, relevant contributors.
3.Yes & No

Charm,

I don't get out much so any help is always appreciated!

1. Google search
2. At first I got on everyday, multiple times per day but now I get on at least once a week to do a quick check up on my peeps!
3. Yes, Yes

1. I can't remember exactly if it was google or what but some search engine. I was looking up Oral Cancer and bam there it was.
2. I check in everyday if I can. And use it for updating or venting when I need a kick in the ass from everybody on here to get me out of my funk or whatever mood I'm in. Will be on tomorrow updating on Ron's surgery...whoa boy long day ahead alone.
3. Yes and No (Ya the meat thing got me too but now I am edgamacated!) lol

Brian, that's a good suggestion in re the cards. As I mentioned in my earlier post on this topic, this site was already well known to my RO and her staff. When I finished treatment I told her that I'd be willing to speak or meet with any of her new H&N patients. This was 2 years ago and I haven't had anyone take me up on it yet.

Oh and I don't have a meat group, I have a tofu group.

1. Google
2. Not as much as I used to. Usually once a week just to check-in
3. Yes, and yes (if you mean REAL WORLD) .


Hope this helps !


Kevin

1. I found OCF from a URL search - key words oral cancer.
2. I don't use the "information side" of OCF very often at all, but am in/around the forums at least every other day. I don't always post, but I do read.
3. There is a real world support group here in Winnipeg and I used to go to it when I was first diagnosed. Haven't been there in 3 years. I find the forums here more on point and have better information than the live support group which tends to so general and inclusive as to have become of little value.

Donna

Charm: That mind of yours is always working isn't it - makes me wonder what you are up to!

1. Google search towards the end of my treatment
2. Daily to check on the forum and occasionally for information
3. Yes and yes - occasionally attend a head and neck cancer support group.

Cathi

@ Donna: makes me wonder, too. I'm sure it will be insightful and interesting. I'm hoping my inquisitive child grows into that kind of mindset. And, it can't come too soon...he likes to take things apart to see how they work. He's getting much better about putting them back together, thankfully.

@ David: Tofu? LOL!

Charm,

Glad to help out!

1. OCF forum postcard in one of my doctors� offices about 6 months after my first surgery.

2. It varies � it is my first place to research an OC issue. At least once a week.

3. Yes, OCF forum provides the best OC support group. Through OCF I meet other OC survivors in the area, and we keep in touch via e-mail, OCF forum, Facebook and in person.

1. google

2. Not much, but lately using the forum for venting and learning lots from all the fabulous OC survivors and caregivers who share.

3. No meet groups - hubs is adverse to "support" groups.
Bonnie

Just to add something to my original reply to this research, before I found OCF, and right after the H&N surgeon told us my son had "Squamous Cell Cancer", I went to some of the Med Info sites, but the info I read scared me so badly that I was afraid to even get online to find out more. It was not until about the 2nd week of my son's Rad Tx that I found OCF. When I went to OCF's site I found not only the best information available, but also the invaluable support and compassion to go along with the information. it is definitely the latter that made it possible for me to accept and digest the information I received and give my son the the support he needed. The two - info + support must go together IMO.

OK, in regard to question #3, are there any members in NW Ohio, specifically Ottawa, Sandusky or Wood County who would be interested in a survivors' support group for oral cancer?

1. General Internet Search after getting the first pathology report

2. The site was priceless more times than I can count. As I move away from it all, this Month being 1 year since I returned to work full time, it find that there is more and more time between visits. I do love to post my all clear results.

3. This was the only group I found. I think Oral Cancer is a very lonely place to be. Thank God I found it.

1. How - Google search.
2. I get the OCF news feed on my (Google) home page & only occasionally use the OCF main website, usually to answer a technical question.
3. Yes, this is a virtual support group & I have no in the real world support group.

Marlene

1. I probably googled it, but don't remember exactly.

2. I only visit the forums here, a few times a month.

3. OCF forums has definitely been fantastic support. I don't have a "meat world" group (had to laugh.....did NOT get the reference). Now that I'm in the UK I have found an attempt at a similar e-vironment done my MacMillan Cancer Support, but I find it horrid and terribly depressing! I suspect that if I was still living in Vancouver I would be volunteering at the BC Cancer Agency, but somehow here it's just not on. When I was first researching oral SCC I found loads of out-of-date and terribly scary stuff on the internet, and nearly gave up, but finding OCF was fantastic and a fantastic stroke of luck for me. I suspect that since each of us has such a unique experience with OC, any "meat world" group would have to be pretty general and would amount mostly to moral support rather than practical support......but it seems if one could be matched with people in similar situations (as works at OCF) then face-to-face could be quite good? But I just don't see that happening.

The day I was told I had Oral Cancer, I typed the words into the search and started searching. It wasn't long and I became the pain in the ass in the forums. I think it was within an hour and I started using this site and have loved every minute of it. The people here have given me much help and a lot of good advice. Geez, that seems so long ago.

1. google search
2. occasionaly,
3. this is it. OCF is my only support group.

1. Internet search, probably Google, 4 months after last treatment

2. Multiple times a day initially, but now, 7 years later, infrequently. Many updates through Facebook page and RSS news feed.

3. No other support group

1. I know I was searching for everything I could find on oral cancer when I was diagnosed. Probably google.
2. Multiple times at first, and especially anytime I had another scare, which seemed to come often in the first 2-3 years. Now that I am 5years out - infrequent checks (maybe once a month) to see how folks are doing, etc.
3. No other support group... thought about joining one here in Atlanta, but never did.
I couldn't remember when I officially registered, so I had to look back at my posts - and I then remembered that I was a "lurker" on the site for @4 months before I finally got up the nerve to register and post something. Not sure why, except I had never been one to join internet forums at the time, but I would strongly urge anyone new who is also lurking to "just do it" and become a member of this community! It's a wealth of information and the forum is such a wonderful place to communicate all your fears, questions, and support to everyone else facing the same kinds of issues.

1. google
2. rarely
3. yes, nope

Actually, I found the Mouth Cancer Forum in the UK 1st and they directed me to OCF. Great bunch of people there also, including our great friend Liz.

google
check in most days
this and mouth cancer support group our uk sister site.
Thanks David xxx

I googled a question and it directed me to OCF. Our oncologist wondered why I chose the Americans over the Brits. Well, your site came up first,that's why. Maybe A for American and B for Brit? Anyway I am so glad I found you all. I check in as much as I can.

From memory (it's been a while and feels like a lifetime) it was Megan who found me searching in desperation for information on our cancer council website - I am forever grateful. Steve was newly diagnosed and I was trying to find as much information as I could on SCC. Thankfully I ended up here.

I check in a few times a week, sometimes just as a lurker but if I feel I can help in some way will always try

This group has been my sole support group. Love each and every one of you. My mum is my rock in the real world.

Internet - in a panicked state!!