| | 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 | Okay, first go to the general board and read my post entitled Isolation & Etiquette. Then add to this thread your "favorite" banal and trite remark that people say to you that just makes you feel worse. You know, those words that not only trivialize our experience but can also cause anger.
I am going to cheat and cut and paste from that post to get the ball rolling:
"Well, none of us knows what's going to happen. Any one of us could walk out the door in the morning and get hit by a bus."
"It will work out in the end"
"Everything is going to be just fine"
"I guess we should all really live like we're dying."
Or EricS's contribution:"oh you are such a strong person" or want the scoop and pointedly ask.."how are you feeling" with pity oozing from their tone.
Share with us the inane things you have been told so we can all laugh knowingly together about this
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | We all seem to drool when we drink and can't help it and sometime with soft food we drool some too. When someone stares, I like to say I was raised with hogs and if youe ever saw a pig eat you saw them drool too.
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: 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 | When they give you an EXACT appointment time (I mean like 11:15) and you arrive EXACTLY on time only to wait more than a hour for his holiness to see you.
When you finally do get to see his holiness you realize you just waited at a traffic light getting there longer than he talked to you.
When you realize after wasting all this time and you're on your way home that you forgot to ask the single most important question that you needed the answer to.
When you go to get a prescription filled and the lady in the window says "that will be twenty seven fifty" and you hand her $40,00 thinking that's reasonable only to hear her reply "no I mean $2750.00"!!
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: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | "Now that your husband has cancer and is home all the time, it must be nice to spend so much family time together."
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | "If there's anything I can do for you, just let me know." I want to scream back, "yes there is, You can take this damn cancer away from me, how about that? You up for that one?"
I also had one idiot ask me, while in treatment. If I was on Nutrasystem, since I had lost so much weight! I wasn't heavy to begin with 5'4" and about 130#s, when she saw me I was 95#'s. Who would want to look like that?
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Advise from people who've NEVER HAD CANCER on how to cope or how I should feel or deal with others. If they understood how stupid they sounded I doubt they would open their mouth..or touch a keyboard. Still makes me want to kick the "expletive" out of them.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Amy, you made me smile, thank you for sharing 
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 2009 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Hey, at least you lost weight and look great!
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Granted some of that stuff is just idiotic, however....
a part of this may come form the inability of people to understand and deal with cancer as well as the desire to say something "positive".
Also some of that stuff some of us might have uttered BC.
M
David, what on earth did you pay 2750 for?
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | There is one of those phrases that I turn around on people who ask "how are you" in such a pitying tone. I just say I'm fine, how are you, and "none of us really knows whats going to happen"!
That gives the person who was so pitying something to think about!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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