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Markus, I think you are absolutely right. People who have not been around cancer do not know what to say. I was one of those people just a little over a year ago. I always thought that cancer was a family thing and stepped back out of consideration. Now that I�ve been through this and am doing well I make it a point to try to help whenever I can. Those friends who sat with me during chemo and drove me to radiation will be forever remembered.

I recently sent emails through my wife to convince one of her co-workers whose husband was diagnosed with melanoma to go to CTRC here in San Antonio for a second opinion. I even got a business card for the physician on one of my visits there and had my wife give it to her. Made me feel pretty good about sticking my nose in someone�s business I�ve never met


57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09.
3/5/09-CT
6/12/09-PET, PEG out
12/1/09-CT
12/6/10-PET
12-8/11-CT
1-4/13-CT
(all clean)
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Posts: 8,311
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When a stranger gives you advice on what to eat so you will never have cancer again;

When a stranger tells you that if you had eaten certain foods or drank certain juices this never would have happened.

When a stranger gives you a web site that will sell you a cure you simply swallow so you don't have to go thru radiation.


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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classic David...I had to tell my mom to stop buying miracle foods from crack jobs because I wasn't going to try any 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.
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My personal favorie is when you make your copay, you get a receipt and they send you to collections 2 years later...yes you read that right...2 years later. I don't even see that doctor anymore.

Eat Blueberries

What doesn't kill you will only make you stronger

the pain is in your head (yes, for us it actually is but not the way they mean!!)

you don't smoke, do you? you shouldn't have cancer.

And of course..like everyone says that infamous "How aaaarrrreeeee you? with the look on their face like they are already at your funeral. I like to call it the "coffin look" So I always "I;m fine, thank you. How are you?" Then this one girl I work with will say "no, how aaaaaaaaaarrrrrrrrrrrrrrreeeeeeeeeee you" like I can't be fine so she better ask me again...lol

Good idea here Charm..it's funny that we all get the same crap

Last edited by suzanne98; 08-05-2009 05:27 PM.

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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Since I'm active duty military and returned to duty after treatment, but was restricted from deploying to Iraq, Afghanistan etc... A leader in my unit uttered the comment that it must be nice not to deploy. I agreed and said if I had known this I would have got cancer sooner.

There have been many that I usually ignore, but this one stuck a nerve.

Cool Thread
Tim


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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I am not amused when people say that "you have such a great attitude about it" or "you are so strong". WRONG ON BOTH COUNTS!

There is no reply to those comments. I often feel weak and scared (as my OCF family knows and has experienced themselves). Where do they get this stuff?

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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WOW- great responses. It is reassuring that others (beside a cantankerous coot like myself) bristle at these inane remarks. I had not thought to include the actions of the medical profession which can be just as annoying but were posted here.

Even though I am religious, or perhaps because I am, another one that gets to me is: "Oh, God never gives us more than we can bear", as though my cancer was some Divine stress test. I do confess that references to Job are easier to take.

Let's keep them coming folks.


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
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Administrator, Director of Patient Support Services
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Personally Im not a fan of posts that are negative and prefer to see things in the most positive way possible. We all have those moments, I dont want to dwell on them. I hope I am able to sustain this way of thinking after this 3rd round.

I just gotta share this one.....

At work there is a very chubby woman who is so lazy and has s very cocky attitude. She barely does her job but is the first one to comment abot others. Anyway, she walked up to me a few days ago while I was eating my mashed potatoes and beans for lunch and asked me how I was. She usually is nosey and rudse to me. The only reason she came over to me as I sat alone trying to be invisible was to see what I was eating.

How I hate office politics and avoid it at all costs. She said that it certainly looks like Im eating alot lately. I looked at her and said I can eat 4000 or 5000 calories per day and wont gain any weight. She looked at me and said ....WOW are you lucky!!!!! I told her I am not lucky at all, Im just fortunate to be alive and if she is able to eat real food then she is the lucky one.

What an idiot, here I am with no teeth and can barely eat a thing and Im the lucky one. Little did she know, I also have cancer again.

That enough of my grouching today. Now its time to make the most of the hand I was dealt. Im going to work, since I really am lucky to have a good job and right now Im able to do my job.


Christine
SCC 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 smile
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Talk about coincidences! Just the other day I was in the gym locker room and this really fat guy asks me " what's that string hanging out of your stomach?" When I explained it was a feeding tube and how I had shrunk from 177 of muscle to 126 pounds, he remarks: "Gee, maybe I should get cancer and get one of those"
I had to laugh and wasn't even upset it was actually struck me as so funny.
I don't think this thread is negative, instead it is a positive outlet for the frustration we all feel. After all the forum is entitled: COPING/ANGER & FEAR , neither of which feelings is considered "positive". Thanks for sharing that anyway Christine with the rest of us "lucky" ones.
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
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I am chucking at Christines and Charms answer LOL Good thinking to both. My pet peave is I keep hearing " You sure don't look sick Jim" It's too bad I can't take them thru a day of my life and make them look like health too. Damn it takes a lot of pain and exercise to look half way decent. Yep,, But you don't look sick and you are about crawling on your hands and knees . LOL GRRRRRRRR POW right in the Kisser people. Some I do laugh at tho.


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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