OK, guys, longterm side effect........Fistulas, I have lost count of ours..Friday, I dragged packer to the docs, much against his will, as usual, front of his patchwork neck looked swollen, me being old hawkeye, didn`t like the looks of it, started antibiotics, last night noticed squishy swelling near swelling........well, overnight it busted {best word here to discribe it} massive amount of crap came out, albeit, swelling on neck has gone down. For some unknown reason this one scared Packer............I`m acting the nurse and reassuring him, checked last email from our plastic surgeon telling me this is normal and will reoccur with basically no solution but to treat the fistula..........I think with this new tumor lurking that this one is scaring him.............so, if anybody has fistula stories please share.........thanks, Dee

Hi, Ya, had that, under my chin with old bar( my replacement chin). It would swell up and give me major headaches from the pressure, then it would finally drain, pus and blood, and then I realized I felt a lot better. So I got so I was glad to see it drain because it was getting out a lot of the infection stuff, plus I felt good after. The bad part is, it kept doing it until they removed the bar and then after a time put the new one in. My ENT said all along the infection was on the bar. I sure suffered with it. Now it is all pink and clean. My humble opinion is getting the guck out is a good thing.

yeh, I agree, getting the gunk out is a good thing, and sure got loads out and swelling in front of neck has gone down considerably, unfortunately, i feel better but now Packer hurts..........i started telling docs the beginning of week something was going, took til friday to get him started on antibiotics, or we would have had to wait, man I hate weekends, always seems that`s when stuff happens.....Thanks, appreciate fistula stories.............Dee

Hi Guys,

FISTULAS, Yikes! Man, Linda has a massive one on her neck. As you all have said, it is best to let all the crap come out and keep it very, very clean. She won't let us see it. She has a tiny spot on her face, that I am a bit concerned that it will give. I hope not. She is always in the bathroom cleaning her neck. It seems likes hours at a time. No kidding. The patience, the strength and determination. Wow! What I would like to know, does it ever heal? Can anyone say that it has healed completely? Between the cancer and this fistula, my head is spinning as to what to be thinking about more. Of course, I want the cancer to leave her alone already, and be completely gone at the next CAT Scan, and then I want the wound to heal and take the swelling with it just because it is so dramatic to see. She calls herself a freak! She says, kids stare, people stare, people speak with loud voices because they think she is deaf because she can't talk. They ask me questions about her, and I'm like, she can hear you, you can talk to her. My sister..is not a freak! I tell her, Linda, you are beautiful to me and to all of us that love you so much.

So much of her energy is being used up for healing and caring for this wound. She needs all this energy and strength to fight the cancer. I am really going nuts here..... She is so brave, as you all are, that are going through all of this. You are all an inspiration for all of us watching you go through this, you are not alone. God Bless you and may he give you the strength you need to continue to fight the fight....Take Care Flo XoX

Well, Flo, just the group of nutty fistula watchers. Packer had one on his neck for 6 months that finally healed after 2 wks of antibiotics, wait 2 months, neck swells up, fistula opens, drains crappy dark brown stuff, back on 2 antibiotics, drainage has stopped, he`s feeling better, but I`m not sure whether we want it to heal, if this keeps happening..........as far as your sister feeling she looks like a freak, Frank actually had people yell out of a car at him "Hey Freak". I`m like you, I don`t even see the disfigurement anymore.......and it`s a good thing I don`t pack a gun, or I`d be gunning down anyone who stares !!! If I catch them, I just stare back............I know how you`re feeling.......Hugs and Prayers...Dee

Hi, I know how you all feel,I look better than I use to, and I have more surgery coming in October, but I have had the stares, people who go by and I hear them say, she must of been in a car accident.People who stare are RUDE.I am amazed that someone could do it. I saw a woman walk into something in a store trying to turn around to get a better look at me. My family says consider the source, but it hurts, for the first time in my life I do not like to put myself in new situations where there are people who do not know me as I am now.I did go to lunch with the girls I use to work with. It was great! They all hugged me and said I was just as fiesty as before. I was almost sick to my stomach before I got there, I feel safest in the life with my family and friends. That is not good . I am working on this. One thing I have found if I am shopping I always go the check out that has a High School or College student working it. They never blink an eye , my sister thinks its because they expect anyone over 30 to be a little odd looking anyway! I think she is right. I do this because the older gals talk to me real slow like if I look odd I must be mentally slow.Some people have no manners and they probably treat most people rudely . The problem is it still hurts and if you haven't experienced it, you can not imagine how much. The thing that is really sad is some people because of birth defects have had to deal with this there whole lives. I hope I was never one of those people who turned their heads to look! Do not let them stop you from going out and doing things, you will only hurt yourself.Life is to be enjoyed by all, be happy about how you feel being out and about.

I know what all of you mean about the stares! At first I wouldn't get out of the house, my female vanity got in the way.After a while with a lot of encouragement from family and friends I ventured out and now I am so happy just to be alive that I don't let it bother me any more.I smile(sans teeth)and let them know I'm O.K. Sometimes I wish I could offer the really rude ones a picture(it would last longer). Have you ever noticed smokers look at you?? Makes you want to tell them "But for the Grace of God there goes you!" Gwen

Hi, I haven't posted on a long time. My husband Jim is a survivor since 1/10/2001. He had squamous cell carcinoma of the tongue. Surgery to remove part of the tongue, salivary glands on that side,and 17 lymph nodes, and 37 radiation treatments. He has had these also, but I never knew what they were called. His neck swells up like he has a huge double chin, then it drains and goes down.
I also know what ya'll mean about people staring. I love him no matter what he looks like, but other people stare rudely as if they were the most handsome prince or most beautiful princess, they should get a mirror!