a month ago i awoke from surgery without a tongue,before sugery i was told that i may lose part of my tongue,which was fine with me.if i had been given a choice i would of preferred to remain intact,(i was functioning fine i could eat,taste talk the only medication i needed was a few codine or oxycontin a day).and go into hospice when necessary,i was stageIV.i still am in shock over what happened.i live alone in the middle of nowhere and can barely function without speaking.a few weeks ago they gave me a plug on the end of my tube so i can utter words,but many are incomprehensible. i can't swallow,i gag when rinsing and have feeding tube since operation 10/18.according to the surgeon the cancer was so large that they took muscle from stomach instead of arm with artery,which i guess would of helped me to swallow.i don't know what else to say, the only relief i get is from pain med.they cut the artery in my shoulder which they said they wouldn't and told me trache would be out in a few days,it's been five weeks now since rad.neck dissection.i can breathe thru my nose.some of the stitches in my lip are still in and have become infected.

Lyle.4

Have you talked to your Dr about speech/swallow therapy? How often do you see your Dr? You have some real issues here that they should be working on for you. You are your own best advocate, stay on top of your Drs. Does anyone like a nurse come visit you?

I know you've been through a lot already, but you need to hang in there and your body will heal in time. My thoughts and prayers are with you tonight.

Hi Lyle,

I remember you from before. You were considering consulting with my ENT I think. Where did you end up being treated? Whereever it is, you need to speech and swallowing therapy and also maybe some connection to social services in your area that can help you considering you are barely able to speak right now. You may need to kick up a little bit of fuss to get those things to happen if you weren't treated at a CCC and are "in the middle of nowhere". I assume you are going back to the doc since the stitches have become infected? Make a fuss then about the other things you need,

I assume they removed your tongue because they thought you had a real chance of surviving the cancer if they did that, and I can imagine the mixed feelings you must have about survival with as many quality of life issues as that creates. But if you can get some speech and swallowing therapy and some support in your life (it wouldn;t hurt to talk to a counselor who has experience counsleing cancer patients dealing with these issues as well), you might wake up one morning and realize life is still sweet.

I don't know how close you are to me, but feel free to send me a private message if you were treated nearby and maybe I can help somehow.

Nelie

thank you for your replies,yes, nelie we have the same doctor he suggested n.y. or buffalo,i have an app't for tuesday and a swallowing test,and i hope he will remove stitches,i've been taking antibiotics.i have a visiting nurse that comes once a week.one thing i have learned the hard way is never go to a teaching hospital,every morning they'd prop me up for the new crop of students to gawk at.i will take your advice,thanks again.

So you were treated at a teaching hospital? I assume then that my ENT didn't do the surgery and you went to Buffalo? Where do you have the appt. Tuesday?

Nelie

(being gawked at during rounds is one of the hazards of being in a good hospital--almost all of which are teaching hospitals--but I can understand how hard that must have been when the surgery was so much more drastic than you expected)

Lyle, Are you having radiation after the surgery?

hi and thanks for your interest,i went to n.y.c. for surgery,i'd be more specific but i don't want to get into trouble.i wish i'd gone to buffalo the doctor there was much more realistic in his assessment.he told me i may be eating thru a tube for as long as six months,the doctor in n.y.,given the same test results said i should be eating in two weeks,so of course i took the easy way out.which turned into the shock of my life.i had previous radiation twice, a total around7500units,so no rad. or chemo was suggested.thank you tim stoj for your prayer.

So do you go back to the place in NYC for follow-up or is the follow-up local? It sounds like you have really been fighting quite the battle with this disease. I will keep you in my thoughts. Keep fighting the good fight!

Nelie

Lyle, I too am praying for you. oh my I wish I lived closer to you so I could help. Carol

Lyle,

You are more than welcome. Is this your 3rd go round with this monster? I ask because you say you had rad twice before.

Keep fighting and I'll keep praying for you.