| | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Rosie,
Nice to see you posting. You should come back more often. Hope you are doing well.
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 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 | We are holding steady with being 21 or 22. This will not get us a win. Its the same people are voting daily, probably only about 20 of us. Im hoping the newer members will see how important it is to win this contest and vote daily. Once Amy (Minnies daughter) gets back from vacation, she will help us. She has the spunk of her mother and knows haw to motivate people to help. Thats how we won last years contest. Im reposting the link. We are located under the tab for $250,000. PLEASE VOTE DAILY !!!! http://www.refresheverything.com/categories/health
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Is there any way to tell who is in the 1 and 2 slots and how many votes everyone has. It would be nice to know how far behind we are.
When I vote, I get a wise crack like 'For Sure' 'Oh Yeah' and 'That's Right'. I sure hope we have more than 20 voting.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Christine,
I have an army of friends on Facebook that are voting everyday. My good friend (and Mayor of our town) sends out voting messages everyday to his friends circle of over 800 people. I've targeted my friends with circles of over 500 and have a couple of highly motivated "marketers" that have gotten involved with our cause...one friend (again with 800+ friends) also is involved with an organization that supports our troops and has committed to using her "powers of influence" to get the word out.
It's not just us and it's not just who we know...but who they know. I see my job right now as motivating and reminding everyone in my circle not just to vote...but to get others to vote. Where I right now we are in 21st place, if we are motivated, diligent and inspire our friends to advocate for us we can "snow ball" as the others lose steam.
No group of people that I've been associated with has the wear-with-all that we do...they haven't traveled the road we have. We know pain, perserverance and most importantly who we are. That's a powerful thing.
Last edited by EricS; 02-07-2010 01:55 PM. Reason: sp
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Eric
You are certainly leading the charge on this one. I missed yesterday as our electricity went out at 2:30 am and with 24 inches of snow, the electric company has been trying very hard but our cul-de-sac was not even plowed, so I was surprised and delighted to be able to vote today after all.
If we had a dozen like you we would be number one.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | Boy am I glad to read your post Eric!!!! Thanks for enlightening me and everyone else here. It shows what one person can do and the network they can create. We need more like you to get this going. Im thinking that if we cant get close to the top spot now then we will be too far behind to catch up. I sure wish they would print the number of votes each idea had. I also wish my networking was as successful as yours. Im trying and so far have several people voting daily.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Christine
Bear in mind that this is a marathon not a sprint. We are ranked high enough that OCF gets a brand new second chance in March. Not a reason to slack off, but a reason to hope that we can build up a strong base that votes daily.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Charm's right that it's a marathon and not a sprint. I don't think that we should have next month in our heads though. It's hard to keep people, especially those that have a casual or less then casual experience with our disease, motivated to keep waiving the flags. The time is now.
What shocks me however is that I've laid out how I'm doing things for others to follow, yet find more posts on my Live News Feed and Status Updates about this contest from my friends NOT associated with OCF. Now granted I have more non-OCF friends, however I also know the list of everyone from OCF on Facebook (thanks Christine) and know who's not posting. I actually scroll through both Live and Status feeds and see who's doing this and can tell you on Facebook who is really going after it.
So I would challenge OCF'rs to a higher standard then that of my other friends. Those people didn't experience the hell that was treatment, they don't know what it's like to watch their loved one lose their tongue or face or their ability to eat, drink or talk. So why should we expect them to waive a flag or be more enthusiastic then we are willing to be ourselves? I would expect OCF'rs to be the example, to take the lead and to inspire people to care and act.
I'm stepping off my soapbox, but I'm so "Frackin" fired up right now I could go twelve rounds. Let's do this thing, glove up and kick the shit out of this contest! Who Dat?
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | | MeganCannon Unregistered | | MeganCannon Unregistered
| Thank you all for your dedication and support! We are ranked #21 this morning and only 21 days left to go. Its time to crack the whip!! If anyone has any original ideas to help us spread the word, I'd love to hear! Last week I sent out an email to everyone on the forum list which reaches over 6,000 emails. Friday- the OCF newsletter went out which reaches over 4,000 people. I've sent out emails to everyone (personal and work related) that I've ever emailed encouraging them to vote. My friends and family have done the same and I post the link on my facebook page everyday. FOR THOSE WHO HAVE A FACEBOOK PROFILE- If you go to our pepsi refresh page today you will notice a button under "Promote this Idea" that says "Install the Application" this allows you to install the Pepsi Refresh application with the idea that you support onto your facebook page! I encourage you all to do this! Ways to spread the word more: - My local Starbucks has a bulletin board for businesses and community members to post flyers and cards. I'm going to create several flyers to spread around locally. I would love to email you all the flyer to post around in your work place, school, local grocery store, or where-ever! Please email me: [email protected] if you are interested. | | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Okay, I don't know why I never thought of doing this earlier but I have a carepage of where I posted my cancer journey while going through treatments and it would notify all my family and friends across the world when I would post something. I have I think about 400+ people registered (from my local town to the UK, to Poland and all over USA), so I will post a message for everyone to vote daily and give them the link. I hope it will make a difference!
BTW I noticed we were at 20 this afternoon!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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