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I worked for the first few weeks of radiation and I had a co- worker say to me, "I don't get why you're so tired, don't you just lay down?"


Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
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Ouch, that one is pretty bad.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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Posts: 1,406
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People are idiots.

Now that I'm a few years out all I get when I show them the concave side of my neck, discolored skin and surgery scars is "You can't even tell!" (or even the more presumptious "The surgeon did a great job." Tell that to the numb half of my tongue)

Uh-huh.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Really? So God is testing us to see if we can think enough positive thoughts? Which God is it? Woden, Khrishna, Allah? Let me know as I must have been praying to the wrong one.


Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
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"They practically kill you to get you better".... true but still!

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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I just love that the first question always is "did you smoke". It's like people need to believe you did it to yourself in order to feel secure.

Another thing I can't stand is the constant "how are you doing". Contrary to popular belief I don't want to continually talk about it as its always in the back of my head. If I look find and don't say anything just don't say anything.

I did smoke. But my oncologist, ENT, and the tumor board all concluded conclusively that it wasn't related as I had only been smoking for a few years and wasn't a pack a day smoker. When I explain this, which I've stopped doing people always argue.
I'll often say to them "well you go to clubs and bars all the time. Alcohol can cause it too.

Or the people close to you think everything is ok because you look normal. If they could see inside my head they'd know there is a daily mental struggle.

I also love when people ask "can I see your tongue". To which I reply would you ever gave asked me that if I hadn't gotten cancer and an operation?"


Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
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I am definitely having problems with family and friends thinking I am back to normal. I suppose its because I don't complain to much to very many people, there are a few chosen ones I whine to. Most friends have no idea how difficult it is for me to eat and when I say something about it they look confused and shocked. I don't want people looking at me like I am a freak but sometimes I wish they knew and understood the difficulties I am going through.


AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
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[quote=rosymonroe]I am definitely having problems with family and friends thinking I am back to normal. I suppose its because I don't complain to much to very many people, there are a few chosen ones I whine to. Most friends have no idea how difficult it is for me to eat and when I say something about it they look confused and shocked. I don't want people looking at me like I am a freak but sometimes I wish they knew and understood the difficulties I am going through. [/quote]
Yeah. I totally get what you're saying. I use to be a fast eater and now it takes me forever and people just assume that because you're "normal" on the outside everything must be fine.
Food is like walking in a minefield for us. I never know what I'm going to have a horrible reaction to which gets looks and reactions or when I jump for joy that I can eat something I couldn't previously and get stared at like I'm equally crazy.


It's also, for me at least awkward on dates. After not saying anything and being taken to restaurants where there was no chance in hell tolerating anything on the menu I now just throw it out there. That I had cancer, I'm going to be constantly checked my whole life and food is always going to be somewhat of an issue. And I say if that's not appealing to you or you don't want to deal with it it's ok. Just be honest.
I've had mixed responses. Some guys hang up the phone, some guys say they can handle it or don't care but then get embarrassed or feel guilty if I have a bad reaction to something I put in my mouth or if I have to apply oral gel because my tongue got stuck to my teeth during the night again. And then I get some guys like the one I'm seeing now just isn't phased by it.
I've even had guys say things like "can I see your tongue?!" All excited like its something fun.
I will say my older brother's family is the worst. They weren't there when I had it, had my operation or long 5 month recovery from radiation and won't even acknowledge I had it. They even went so far as to make fun of a fundraiser a friend made for me online and that I was begging for money and being dramatic.




Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
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Wow, someone else that is still in the dating scene? I haven't really started dating again but I have many questions and some anxiety about it, can I PM you?


AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
Joined: Jul 2012
Posts: 50
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Posts: 50
[quote=rosymonroe]Wow, someone else that is still in the dating scene? I haven't really started dating again but I have many questions and some anxiety about it, can I PM you?
[/quote] absolutely!


Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
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