| | 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 | Make her sit in the corner until she behaves.
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: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | You guys are really keeping me sane. Im so pleased that I didnt turn mean when I found out I got cancer! I was wondering why Ive been feeling so spiteful (which isnt normal for me) towards people who are uttering such meaningless words. I know that people dont know how to behave but common sense should prevail! Im fed up with people trivializing what Ive got by saying 'at least they caught it early, you will be fine' yep, doing just dandy thanks, my life has been turned upside down. Sorry whinge over!
Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue.
Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | I do have to say that I'm angered at some of these posts! What must go through their minds! They need a filter!
Damn.....to be born in a barn and with no common sense to boot! I'll be fine, but it sure sucks to be you! LOL
For the most part I just don't think people know what to say, so I just ignore them.
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | I'm going to chime in since I've had one of those days. I remember back to when Neil was diagnosed at stage 4 and a doctor said to us that stage 4 oral cancer is not as bad as stage 4 in other types of cancer. Oh really?
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | 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 | Suemarie
Since I have been on technical grammar kick, in that sense, your doctor may have been inadvertently right. Stage IV oral cancer is not as bad as stage IV in other cancers, IT IS WORSE. (English 101: if something is not "as bad" then it must be either worse or better )
Seriously, I am glad to see this thread alive and well as when I started it there were grumblings about it being "negative" as though there is anything positive about having oral cancer. I am glad newcomers find it comforting. Let's keep this list growing in case we ever do get Oprah's attention.
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 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | I just have to say that we call the people who utter stupid comments-DGI's -on the widow board I go on. DGI meaning Don't Get Its. I probably was a bit of a DGI before this chapter in my life so if someone says something only mildly supid I try to let it go. I have a much lower tolerance for people in the medical profession however.
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Jun 2007 Posts: 6 Member | | Member
Joined: Jun 2007 Posts: 6 | I need to vent here. How about people who start giving medical advice to your husband who is terminally ill. I say" you are not his doctor, so be quiet." Or the person who says "how's his cancer?" I say, "here's his doctor's card, why don't you call him." Another one is "" I hear your husband has cancer", I say, "does that really make you feel better knowing that info, have a nice day". Walk away. The wife of my husband's best friend, who thinks it's her job to tell everyone in town our personal business. (we live in a very small town) I think I'll get my voodoo doll out. Taking care of someone who is ill is exhausting enough without dealing with idiots. I've risen above them and am trying to stay strong. Sorry , but I had to get this out. | | | | | Joined: Apr 2009 Posts: 22 Member | | Member
Joined: Apr 2009 Posts: 22 | At our church during dinner after our Sunday service one of the visiting group that provided the music sat across the table from me. As I was attempting to smush up my food in order to swallow it she looked at my face and asked "What happened to your face"? I started to turn the question around on her as well but with a shrug I just said Fate played a cruel trick and blasted me with cancer, removed my plate and left the fellowship hall. Needless to say I no longer eat at church functions since I have upper dentures and no lower teeth or a place to put them. I joke about smushing up my food but it really hurt when the women I work with once made fun of my peanut butter and jelly sandwich-which was the only thing I could eat well at work. I now eat only yogurt or banana at work and not where anyone can watch. Good thing I work nights. I sometimes feel like one of my patients and want to say Good morning this I am nurse Franekenstein how may I help you. Humor gets me through a lot of tough times but I seldom go places I know people will stare at me.
Last edited by SuzyB47; 09-20-2009 01:53 AM.
T2N1M0 Stage IV SSC right lower alveolar ridge with fibula free flap, Peg, trach, selective neck dissection,one node positive. No Chemo or radiation.Surgery 3/08.Cancer free for 2 years as of March 13.
Hope is a good thing, maybe the best of things and no good thing ever dies.
| | | | | Joined: Apr 2009 Posts: 22 Member | | Member
Joined: Apr 2009 Posts: 22 | Glad I came back the negative comments scared me off once but feeling better about facing what may come and facing the future with whatever the Lord has for me. I won't stay away again. Makes me feel there is a place out there for me.
T2N1M0 Stage IV SSC right lower alveolar ridge with fibula free flap, Peg, trach, selective neck dissection,one node positive. No Chemo or radiation.Surgery 3/08.Cancer free for 2 years as of March 13.
Hope is a good thing, maybe the best of things and no good thing ever dies.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Negative comments have no part in my life. I eiether inore or be a smart ass. I have never given up one thing because of someones ignorance but enjoy my life and go everywhere. I think we have sacrificed enough and the hell with the fools of the world, Join then and do what you want. I try to wear my OCF shirts when I go strange places ot waiting areas in Hospitals. The shirts say alot.
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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