| | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | I totally agree that any type of cancer is horrible and can be devastating in its own way. However, until I watched my mom go through the last 4 1/2 years, I had no idea how much OC changes your life. I hope to never experience the "C" word, but I've thought several times how it seems like it would be easier to have a different kind of cancer than OC because then at least you could still eat, talk, enjoy a glass of iced tea w/friends...have a drink of water, which is what my mother told me she wanted for Christmas. I'm trying to help spread the word.
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | 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 |
Nancy,
I sure do agree with you, and I have the same 'wish list' for christmas as your mom.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Karen
Santa is going to think he got zerox copies of Christmas wishes from Oral Cancer patients like us. It's funny, we were just talking about Christmas gifts and I remarked how I would wish to be able to drink a full glass of water, take a sip of wine and eat just one meal except that I know it's not gonna happen this Christmas. Yeah, all cancer sucks, but the holidays with the emphasis on food are especially tough on us. There's a reason why the worst punishment the Catholic church gives you is excommunication - being cut off from receiving bread & wine. And most other cancers just don't do that.
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 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | My xmas list is YooHoo and maybe eggnog with some spirits. "Drink the yoohoo" is the battle cry for one of my surgeons. They will try to open my esophagus again (3rd time in 4 mths) on the 15th. Maybe an xmas sip of yoohoo will happen.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I totally agree with this topic. David..you are right..people are obsessed with the breast, or as the bumper sticker says "save the ta-tas" I would rather have both breats removed and look like I'm in 1st grade than have tongue problems. Do people ever think before they talk? I think if I had been on the receiving end of the comment Angelia got I would have said
" really, I'm lucky? I don't have a tonge" I like to shock people when they act stupid. Ok....that's enough...I vented...lol
airkitty...I sure do you hope you get that yoohoo!!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | I just looked and saw that we have 9499 views on this thread. I know we can make 10,000 before Christmas. My latest peeve has been at my gym where everyone is saying: "Oh, your speech is so good, just like it used to be". Well, their assurance does not comport with my MP3 voice recorder which tells me I sound like a major stroke victim.
I appreciate the sentiment behind the comments, but come on, I know I do not sound like myself before the Cancer came back a second time and I needed the tongue surgery. I smile, but I am tempted to say "I guess you never listened to me before then"
But that would be wrong.
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 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Thanks Nancy for keep spreading the word. When you are ready to do an event, let me know. Would love to help!
Suzanne, love your response! YOu are too funny! But everything you said is right on! I think the same way when it comes to oral cancer. I think my brother would rather have anything cut off than his tongue. Not being able to communicate or have a drink or eat your favorite food, one of lifes greatest pleasures, is a horrible horrible thing to deal with. People just dont know, they need to be aware. Hearing all of you confirms by determination to keep going with awareness events and screenings!
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: Jun 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | I found a new thing to hate today:
My boss is actually scheduling his employee lunch around my next surgery. Sounds nice I know but keep in mind that I have not participated with any company dining events in nearly 2 years. Or since I stopped being able to consume nutrition by mouth (a.k.a. eating). I would love to tell you that he has a big heart as is being considerate but really he is more of a lazy moron than anything else. Thanks for listening to me vent.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Got to add another one to this. I was talking to a friend on the phone last night, and I know she did not mean anything by it, but this is what she said, "I am envious of your diet plan in a way." UH, Hello! I told her I would gladly trade places with her and then she realized what she has said and tried back her way out real quick. It was kind of funny to listen to her try to fix that one.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | 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 | you make it thru all this cancer, Tx and recovery crap and you still get normal colds!!! Why can't we get some lifetime virus exemption?? Haven't we been through enough? I have a case of the "winter" (even though it's still in the 80's) crud. Have had it since Sunday and now I'm in the "I known I'm going to cough my head off" phase. It's bad enough to have to put up with this stuff but it's made worse by all the caring people around me telling me I need to do this or do that or go see this doctor and on and on! Ugh, just leave me alone!!!
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.
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