| Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | I have been battling oral cancer since June 2005 and just had my 4th surgery on my tongue this past week. I am a volunteer for the OCF and a member of the forum since 2006. I am so grateful to Brian that there is an OCF website that contains so much valuable and accurate information on oral cancer. In my opinion, the forum is the best place to go for information and support for patients, caregivers, their families, and those worried that they may have oral cancer.
Lately there has been a lot of bickering and name calling on the forum � more than I ever recall happening in a short period of time. I have always stayed out of those conversations because I don�t feel they belong in a public forum.
As a reminder to all, please read these quotes from the OCF home page and the forum sign in page:
�A FREE and anonymous patient / survivor discussion forum is open to the public, where those currently fighting oral cancer and their families can gain insights and inspiration from those who have been there before them. It is closely monitored for appropriateness of information posted there.�
�Remember that this is hopefully a place for the positive exchange of ideas, not a place to verbally trash someone else. Although you may wish to vent your frustrations, and that certainly takes place in an environment as emotional as a cancer forum, please keep personal attacks out of the messages. If you wish to exchange specific information that includes doctors names, phone numbers, (perhaps to talk to each other on the phone), and similar information, please do it by email between yourselves rather than posting it on the boards.�
So I am asking those who have engaged in this type of activity to PLEASE STOP! Please make use of the �personal message� (PM option) or e-mail if you have a personal issue with another member of the forum. Keep in mind when you post your comments on the forum, it remains there for all to read and for all to comment on, and it will remain as part of the OCF forum for years!
A few months ago I had recommended a newly diagnosed person with oral cancer to come to the forum. After a few posts and some not so nice comments from some long-term members, she left the forum never to return. I know others have done the same thing.
In my opinion, this is not what the forum was designed to be � it should be a welcoming and supportive place for all, regardless of their opinions. Please THINK before you hit the submit button, REREAD your post and use the EDIT feature if it can be inappropriate or offensive to anyone. Remember many people on this forum are fighting for their lives, have had life altering surgery, are watching their loved ones die from this disease, and some members may not be here in a few months because this cancer killed them!
I certainly enjoy the friendly jesting and kidding around that goes on the forum � considering that this is a cancer forum, we all need something to give us a chuckle or lighten the mood. But please be respectful of each other and the purpose of this forum.
Thank you!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Great post Susan.
This disease is such an emotional rollercoaster that I'm surprised it doesn't happen more often really. It's easy to forget what others are dealing with when you have so much on your plate yourself and then something someone says strikes a bad chord with you. I know I struggle with this and try to stear clear of the forums when I'm not dealing well...obviously I'm not always successful with it and am usually quick to say I'm sorry.
I'm just thankful for the "voices of reason" on these forums, moderators and other posters that seek resolutions and understanding. I hope to get there someday, but it's all about the journey.
Happy Easter Susan and thanks again for this reminder my dear.
Eric | | | | Joined: Dec 2010 Posts: 99 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2010 Posts: 99 | Thank you Susan for this post. I couldn't agree more with your comments.
I do appreciate the posts related to honest feelings about how a person's journey is going, no sugarcoating like I tend to do to everyone else. This site helps me realize what we are feeling is "normal" and we are not alone with our feelings, positive or negative, here we can share the positive times and the setbacks. I have laughed but I also have felt uncomfortable and saddened by posts where members feel they have to start defending their own shared journey here. We are each others lifeline - at least you all are mine. Thank you.
PS: Thanks to whoever added spell check!
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
| | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 251 | Thank you for the reminder, Susan!
Catherine
2mm tumor excised 09/23/2008 (floor of mouth) SCC (superficially invasive, well-differentiated) Stage 1, T1N0M0 01/2009 and 01/2010 - PET/CT clear Four and 1/2 years - NED! "Detection can be easy, treatment is not!"
| | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 251 | [quote=Karenj]PS: Thanks to whoever added spell check! [/quote] Karen,
I would really like to know how to find the "spell check". I use spell check on a Google tool bar, but don't see it as an option in the OCF post box.
Thanks!
Catherine
2mm tumor excised 09/23/2008 (floor of mouth) SCC (superficially invasive, well-differentiated) Stage 1, T1N0M0 01/2009 and 01/2010 - PET/CT clear Four and 1/2 years - NED! "Detection can be easy, treatment is not!"
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | When I type misspelled words are underlined with a red dashed line. On my MAC I hold down the control button and click on the word and it gives me options of other words to replace it with�. too simple. But this may be a MAC function, and I use the same thing in Word, and many other applications�..
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | When I use my MAC, I get the same red underlined words for a misspelled word. This does not happen when I use my other computer which isnt a MAC. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | True - same for my iPad - but not my pc.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I use HP and from Internet Explorer I have no spell check but from Mozilla Firefox I have always had spell check and it underscores the word and just by right clicking on it it brings up suggestions.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | The Google Toolbar for IE (Internet Explorer) includes an spell checker tool listed under the 'Toolbar Options'.
Once installed and activated, it will add a "CHECK" button to the toolbar that you need to click before it will find and hi-light typo's.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
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