| Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | I couldn't agree with you more Patty.
The devastation that OC can have on our lives and in its aftermath is life changing and a difficult challenge we have to face every single day. For many of us the simple things in life like no longer speaking clearly and eating a normal meal have now become something we have to struggle with daily, and in some cases now only a dream.
And for those who have had OC and have had to have a trache to breath with know only to well how painful this disease is.
Whatever impact OC has had on us, greater awareness of this beast is overdue.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | I persoanlly love the OC bracelet idea. I get Malka and Brian's point. However, I want people to say "what is that for?" Susan Lauria and I both have one from SPOHNC it stands for Support People with Oral, Head, Neck Cancer. It is maroon and cream. I just bought them because I wanted one. Susan told me about hers when we were discussing bracelets.
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 | The only way we will get it recognized is to just keep telling enough people and letting them see what we go thru. I put brochures and phamplets in Hospital waiting rooms, Dr offices and anywhere I can think of. I have to get more of them from Brian because I am hitting 2 different Hospitals for this anneurysm work.
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
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Please just email Brittany at the OCF office and she will see that you get anything that you need. mcginley at oralcancerfoundation.org
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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | While I believe that the red creme red ribbon may make some of you feel good, no one has a clue what it means. there are over 2700 registered ribbon colors.... who is going to remember more than pink and red ( breast and AIDS)? Remember also that there are so few of us, as our incidence rate is low, and our death rate is high. 300 million people in the US and a few thousand wear an oral cancer ribbon... NOT going to change the world. Malka is right there are better ways to do this. You you want to wear something to attract attention, the button that I wear always gets questions as does my t shirt. Anyone who would like an OCF medallion button (not in the store but that we give to donors) just ask. That one works when I wear my suit for getting attention, but the ones with sayings on them get more questions, which is of course what they were deg]signed to do, since the saying is open ended. I have worm my LiveSTRONG bracelet ever since Lance gave it to me at a cancer conference in 2002. It means something to ALL cancer survivors. It is a statement about how you should approach each day. When I am not feeling good, or positive about where things are going, the message is a readily available and meaningful reminder to me to take the most away from each day, each opportunity, each encounter. We have had the opportunity to do the bracelets since Lance gave me the Chinese manufacturer info. But its a me too thing. There are zillions out the green for our troops purple for prostate, other rainbow ones for gay pride, etc... the list is limitless, and at the end of the day they (except for the yellow one), don't get lots of attention. A ribbon color out of several thousand options does also not bring much attention, and it doesn't go with my daily jeans and t shirt that well. It's a lapel kinda thing. There are better things to do if you are motivated.
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: 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 wear my bracelet for ME and for Robin.I carry my fight in the dog bag everywhere i go and my pin is on my bag all the time.My car carries a hospice sticker,and an ocf sticker,and a macmillan sticker.Like them or not ,feel they are useful or not,i believe in them and to me thats all that matters.
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: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | And your right. If it matters to you, you should be doing it. My post was not an observation on what others are doing, but a comment on why OCF is not investing any donated money into pursuing this. Cookey, creates awareness and spreads information everywhere she goes, with or without stickers and goodies. She's that kind of lady.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Central IL is getting a big dose of pamphlets, brochures and information also Jim. We will have the midwest covered. LOL
Everyone is very receptive to the information, but most have said that they did not know of the Foundation or the website. I intend to change that.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Liz...that is a good point. Well spoken as always. You always have great words of wisdom:)
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:)
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