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Great piece, Charm. Thank you so much for sharing it.

- Margaret


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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I came across this column on AARP online about those of us with a chronic condition
[quote]I stumble upon the website during an idle Google search. It is devoted to the day-to-day struggles of folks with chronic illness. The title, "But You Look So Good," is sarcastically scrawled in a messy hand across the top of the page. I smile. For many of us, that tongue-in-cheek sentiment is all too familiar, the meaning clear: really, you cannot look that good and be so sick...I have grown weary of people�some strangers, generally well intentioned�telling me how good I look. That same thing often happens to me. "What did you expect?" I sometimes respond if I know the person. "A cadaver?" [/quote]


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 2010
Posts: 31
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One of Jim's former coworkers/friends came by to visit him about a week after he finished his treatments. Jim felt horrible and looked even worse but wanted to be courteous and visit with the friend. Maybe the conversation was lagging but the friend tells us how many funerals he'd gone to lately. Oh really? we ask. Yes, the first one was a friend who had been battling cancer for a while, then BAM it comes back and he goes quick. The second was a relative who was just "eat up with it."

I just wanted to cover my ears and Jim's too. Ugh, some people just don't think!


Debbie, 53 wife and caregiver to Jim, 68, non-smoker, social drinks only. Stage IV SCC rt. tonsil. HPV+. Neck dissection 12/29/09. Peg inserted 2/2/10. Cisplatin and rad started 2/9/10. Carboplatin given 2nd round. 3rd round cancelled due to toxicity. Finished 30 rad treatments 3/23/10.
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So sorry! JEEZ people can be so insensitive. I bet her was just nervous. Sometimes when people get nervous they say exactly the wrong thing.

Its like when someone laughs during a funeral...know what I'm talking about?

No excuse though, but I think that's what happened. Sometimes its just better not to be chatty... especially if you are going to blab away about something completley inappropriate and upsetting to the person but some people dont' get it!

Lets hope that your husband's friend had good intentions. I"m sure that he did. People just don't know how to handle themselves sometimes during emotionaly intense moments. I'm sure he was a good dear friend with only the best wishes for Jim and for you.Certainly wasn't anything either of you needed to hear.




Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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A similar thing happened to us but since the RO had just bumped up my fentanyl patch plus I had popped some oxycodone, it struck me as amusing. The look on my visitor's face when I asked "So, I can count on you then to come to my funeral?" was priceless.

Don't forget, my cancer came back in a year, but I have not gone anywhere, quick or slow, and am still here. No reason this won't just be a fading memory years from now. Of course your story illustrates exactly why this thread was started. People just don't know what to say or do when they meet a cancer patient in real life instead of seeing one on a TV drama show.
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: May 2010
Posts: 638
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I introduced myself 3 days ago (thank you Gabe for telling me about this site) and of course have been reading the posts ever since. This is the one I keep returning to. I cringe when I think of my own behaviour a mere few months ago but generally this thread lifts my spirits and gives me a laugh. Whilst I haven't had as many experiences as many others here, as Alex's carer, there are some gems coming my way already.

Things MY Mother says
"You must be so stressed" - well yes, but I'll have my nervous breakdown later when Alex is through his treatment thanks
Things HIS Mother says
"How about I come over and stay with you?" we love her but, NO
Things I say to Alex
"Look on the bright side" when his head is hanging off the end of the bed and getting up to go to the bathroom requires planning
"What flavour yoghurt do you want?" - like asking a blind man what colour he wants his house painted. Duh!
Things well meaning colleagues say
"Fatigue? At least he can sleep all day - he doesn't have to work or anything does he?"

and finally harping back to one of the original posts from well meaning friends - not "how aaarre you?" thrown out to you survivors, but "how are yoouuu?" asked of us carers - surely they don't know what they are asking and don't realise the English language doesn't have the words.

Now onto the thread about things I love ...


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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When Parade Magazine [the defacto national Sunday newspaper magazine, distributed in more than 400 newspapers and he most widely read magazine in the U.S., Parade has a circulation of 32 million and a readership of 71 million]runs a special issue devoted solely to "Cancer in America" WITH NOT ONE WORD IN THE ARTICLES ABOUT ORAL CANCER OR OC PATIENTS.
The only mention at all is indirect in the report that "the deadliest cancers don't get the most funding" which lists "esophagus" cancer as on of the top ten cancer killers in 2000 with the lowest funding and that NCI doesn't get many research proposals for head and neck cancers
You would think that the major discovery of HPV causing head and neck cancer would have merited one sentence.
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: Sep 2009
Posts: 177
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Joined: Sep 2009
Posts: 177
Hey Charm,
I so totally! My husband gets so mad at all the "Breast Cancer Awarness" commercials and walks etc. He said one day after seeing a commercial for the "3 day walk for Susn B Colman, Breast Cancer" What about all cancer, what about my wife, what about all the kids. I just don't see how people can do all this stuff fow a specific type of cancer when so many people are dying from many, many types of cancer. I just don't get it.

Grrrrr!

Wendy


Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear

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I know. I don't want to knock those who support the breast cancer awareness cause. I think that part of it is that at one time oral cancer was linked to "bad habits" primarily. But there are a growing number of us who never smoked in our lives, were light drinkers (if any) and the HPV test was negative, but we got it anyway!


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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I am sorry, I guess I didn't mean to knock anyone that supports any type of cancer. I'ts just hard to watch all that support, (especially for my DH & 14 year old son) when your feeling so all alone and afraid your going to lose the one you love, or your own life. Then you see commercial after commerical about breast cancer awarness. How about just "Cancer awarness" breast, prostrate, cervical, liver, lung, throat, tongue, brain, you name it millions are being affected by it.


Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear

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