| | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) |  "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | I have one suzanne,it is a pale blue one and i got it from the uk mouth cancer foundation.I wear it 24/7
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Suzanne,
I knew that Brian has commented about his feelings about bracelets so I did a search to save him some time.
[quote]"This has been discussed at great length. Do some searches. In my opinion we do not need an emblem, that isn't going to change the world. There are bracelets for everything under the sun, so many that you can't remember what all the colors are for. And while the ORIGINAL was a killer idea (I am still wearing the original that Lance gave me personally when it was a seed of an idea) that raised millions of dollars when attached to an international celebrity and his battle for numbers 6 and 7, the other ones are mostly forgotten. Pass"[/quote]
Interestingly Liz, the pale blue one I wear is for Multiple Myeloma, which I wear for one of my partners in our practice, that has had MM since 2002.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | I wear my my livestrong everyday as well as a SPOHNC (Head and neck cancer) bracelet that CAssie gave me at my walk.
I understand what Brian is saying about all the colors, the livestrong is the most recognizable.
But what about magnets for the car with the OCF logo on it that simply says "Early Detection saves lives" or something about getting your mouth checked. I know there are alot of those out there as well, but I know I read all of them when I am behind someone at a light! Just an idea.
Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | My objection to all of this is that it is so easily commercialized. I am a breast cancer survivor and am turned off by all the pinkness in the market place. I have seen advertisments for ribbon pins, car magnet bows, bracelets, etc. in a rainbow of colors. The actual "cause" gets a very small percent of the sales.
We can do more good by encouraging others to donate directly to OCF, use the Amazon link and buy products from the OCF store. This is another answer to "What can I do for you?"
It is very easy to slip a few of the OCF brochures in a purse or jacket pocket and give them to doctors and dentists for their offices. I have spoken to med students, radiation therapists, etc. as I go to various tests or even in elevators. Take advantage of those group inspections by the medical students to give them a personal insight.
Most important: encourage as many people as possible to get regular checkups and to be aware of symptoms that persist for more than a few weeks or do not respond to treatment. This can be done in a non-alarming way, such as "it is better to check it out and catch it early if it is something."
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Malka,
Beautifully stated.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | I agree,but none of the other cancers have as much trouble getting publicity as we do.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Actually we fair better than many.... though it can never be enough. Just be thankful we are not the Anal Cancer Foundation...... that would be a tough one. (There isn't one buy the way)
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Over 1.4 million people are diagnosed with cancer annually in the United States. And I'm willing to bet that most people can't or don't know where to turn for medical/mental/physical help, research or advice. That they are at the mercy of the first Doctor they go to. All diseases and ailments are each bad in their own way. I look at my situation with OC and I think about my grandfather Flaherty's pancreatic cancer--mine is bad but his was devastating. To see him rot away at the limbs because of gangrene was horrible--it's something I will never forget. Tongue cancer or a stroke? Yes, I might have speech & eating issues but I'm not in a wheelchair. To say mine is worse then someone elses is just not rationale or fair.
We have a very good site to turn to. This site should be a model for every disease and ailment out there. From anal cancer to the military veteran having trouble coping, to the wife/GF being beaten. It's a confusing mad mad mad world, but a site organized like this one makes life easier. When people help, no matter what the cause is, it makes a world a better place.
Support OCF the best way you can--there are a few ways to do so. Accessing Amazon through OCF, buying from the OCF store, donating cash and spreading the word "OCF" to others.
Last edited by Ray1971; 12-09-2008 05:36 AM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I agree...this is the best site. I really wish I found it sooner!!! I will be purchasing a t-shirt without a doubt.
I may also donate money instaed of favors for my wedding. People do that a lot now. And seriously.....who uses those favors anyway?!?!?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Did you see on the news at 6:30 that by the year 2010 there will be 17 million deaths a year attributed to Cancer? And 10 years later add some more. It is time for someone or thing to make some sort of discovery and find a breakthru for Cancer treatment. It might be the year 2020 and I am wrong. But it wasn't that far away whichever it is. Entirely too many deaths.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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