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I got a laugh, or at least a little bit of enjoyment about reading posts on this thread which I had not done until now.
A number of posts comment on others comments on weight, or lack thereof, after having gone through oral cancer treatment.
I have always been slender, and probably have lost 4 or 5 pounds, which is noticeable when you don't weigh very much. But I just have not been successful in putting any more on, although I eat well.

It always strikes me when people make comments like, "what will become of you if you lose anymore", etc, how they would never make comments to someone who was overweight, but they certainly will to someone who they think weighs too little. I imagine myself replying, "well, maybe you could give me some of your weight"; I could never say that, but I have thought it! And I also had stomach surgery 7 months ago where the bottom 20 percent of stomach was removed to get a non-aggressive sarcoma, not related to oral cancer. You'd think people who knew your story would not comment on weight and I guess they are concerned, but they definitely lack tact.

Anne



SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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One of my favorites is: "everything happens for a reason." My mental answer is "why don't you just go &$%*@ yourself." But I just put up with it because I figure they're just trying to be helpful.


Diagnosed in March 2011. Treatment ended May 28, 2011. Back of tongue cancer with one lymph node(stage 4). Feeding tube 5 - 2011, to 9 - 2011. Some saliva and taste. Eating most foods; meat, fish and dry foods not so well. Swallowing pretty normal otherwise. Doing well now. The future? Who knows.
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My favorite one is this: "Everything happens for a reason." My mental response is: "Why don't you just go %$&*@#$ yourself." But I don't say anything. I just nod a little and figure they mean well so why challenge it.


Diagnosed in March 2011. Treatment ended May 28, 2011. Back of tongue cancer with one lymph node(stage 4). Feeding tube 5 - 2011, to 9 - 2011. Some saliva and taste. Eating most foods; meat, fish and dry foods not so well. Swallowing pretty normal otherwise. Doing well now. The future? Who knows.
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Charm this cracks me up! I don't know if anyone else has commented on it (and I'm fairly new to the board) but I hate when people say this MAINLY because that reference in the bible is talking about temptation and really doesn't have anything to do with hardships/tribulation! I usually want to tell them to go back and read their bible again because they sound like an idiot! lol

MissB
[quote=Charm2017]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.
[/quote]


Female, 37 yrs old,Non-Smoker/Social Drinker, HPV-
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Fall 2014 - HBOT due to wisdom teeth extraction post radiation
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Whenever I heard the one about "God never gives us more than we can bear" the accompanying thought that always came to me as a CG to my son, was "God, are you sure about that? Do you really know me?" The bible has been translated over and over so many times, with things left out or added in to "modernize" it and to fit many different religions, it is no wonder it has stayed as popular as it has for so many who refer to it for inspiration or to prove whatever point they want to make. As a former teacher and translator of medical research documents, I knew how important it was to be able to translate the thoughts of the speaker (or writer) and not just the words. In effect, we are at the mercy of the translator when referring to any translated document. Personally, my "bible" was OCF. This is where I came (and still do) for my inspiration, practical help and compassion. Just to be on the safe side, though - I do resort to prayer. IMO, whatever works, DO it!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Thanks MissB. I've been away from this thread for a while although it was my baby and labor of love at first when I started it.
But now I have another thing to add. the newest insurance scam:
Hospitals "admit" the patient but in the medical records, they are admitted "for observation" rather than "inpatient". There is no apparent difference to the patient, they are in a hospital room and a hospital bed, getting hospital meals and IVs. But when the insurance bill comes there is a major difference: instead of a fixed payment of $250 per day co-pay, the out of pocket is now 15% - the full outpatient rate. I had never heard of this until this week when I rushed my wife to the hospital emergency room on Tuesday before Noon for abdominal pain. She ended up having her appendix taken out at Midnight. [she's home now and doing fine- I'm the caregiver now}
I noticed the "observation" entry in her medical record and raised holy hell. Two days later, 7 increasingly legalistic emails, 4 Vice Presidents and One CEO confrontations later: the hospital decided to bill her as inpatient.
It's these damn Milliman guidelines that all the hospitals and insurance companies and now even CMS (Medicare) use.
So don't you just hate it when they find one more way to charge you more for health TX?
Charm

Last edited by Charm2017; 04-21-2012 07:39 AM. Reason: typos

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
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How did you see the medical record? Just want to be ready!!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Just like I see most of my medical records: I take the book the nurse has out for the doctor and open it. If it's an office visit, it's usually in a plastic box on the door. For hospitals, it's usually on the gurney or the foot of the bed. The nurses and techies have to put entries into it, and nowadays there is usually a page or two of sticky labels for blood test tubes etc.

Plus in this case, I asked the ER doctor to be sure it was inpatient and he went out to the case manager and said he couldn't change her recommendation. The surgeon said he would after I mentioned I had started off in malpractice law. While you have to scan the pages, the info is there albeit with cryptic: adm:obv or adm: surg/ip,.
Usually I have so much waiting time, the doctors don't even know about it, but the few times one has walked in, I smile and ask a question about something in it.

Whew. long answer. Better strategy: just ask the doctor and ask the case manager directly. I did that too.
Charm

Last edited by Charm2017; 04-22-2012 12:16 PM. Reason: typos

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: Feb 2012
Posts: 151
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Speaking of medical records. . . my mom had recommended me getting a record of every visit, proceedure and test. I finally requested my husbands reports and ended up with 80 pages and his PET scan on CD. It will be good having all this on hand if we ever need it for a second opinion. It proved very interesting reading!! Had to laugh when they commented on his mental state. Also when they would mention that my husband would leave the office (as was his practice) and his wife (me) would have a ton of questions. He even didn't go to 2 meetings with the doctor and just had me go. He has a definite "need not to know" mindset. I do all the reading and research and he says I'll do whatever you want. Let me take away his sugar and drank the worst green veggie shakes just for me.


Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
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Thanks Charm. So, we WANT it to say inpatient, right? Sorry, having a hard time focusing!!

@Terri.... ;o)


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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