Hello Rosie,

After reading all the responces to this thread I wanted to share with you how I feel about it.
One of the things that make us human is to be able to disagree without losing that bond we all share.
I don't think there's a member of this forum who doesn't love you. You post when you feel the need. Your posts are always informative and I and many others value your input. Meeting you was one of the highlights of the reunion for me.

Your Friend, Danny Boy

Hello Minnie,

I understand what you were trying to get across. In no way did I find anything in your post offinsive. I consider you a valueable member of this forum and would hate the thought of you not posting due to a misunderstanding. I'm sure Rosie agrees with me. You both contribute so much to this forum.

Did you receive the album? I sent it out over a week ago. Hope it didn't get lost in the mail.

Looking forward to the day we meet and keep those posting coming.

Love ya, Danny Boy

This PEG tube stuff always brings out all kinds of emotional response - more so than any other topic (except religion). I didn't get one and defied my RO, AMA. Rummage around in the archives and you will find the same discussions. Maybe some folks are short about this because of that very reason. I have to admit that there haven't been many discussions of the nasal feeding tube option so that has been an education for many of us.

I paid a price for my decision - lost 60 lbs, inhibited the healing process, etc. Would I do it again, go PEGless that is, probably, but I couldn't in good conscience advocate that path for everybody. It certainly isn't a path for the faint of heart or those in which extreme pain is an issue. Did it help my future swallowing prospects? I use to think it did but now I am not so sure. The swallowing issue is a complex one subject to many factors and unknowns. Surgery, pectoral flaps, radiation, etc. all play different roles.

Some folks here very life has depended on the PEG. The bottom line is that we all respond differently to treatment so everyone's opinions are of value. It does cause me a little pain to see it getting personal, or rather that some opinions are percieved in a personal manner. We are all survivors here and each of us bring a unique piece of the puzzle to the table. This is NOT directed to anyone in particular, just a general passing comment.

Minnie,

I am sorry if I read your post the wrong way. I still bvelieve this post has gotten out of hand. Again, sorry.

And Rosie, I wrote that in the waiting room at MSKCC. Talk about a touchy day, my doctor was 2 hours behind!

Glenn

Rosie and all else involved in our OCF drama thread:
Each and every one of you are an important part of my life. One of the first things I do in the morning is come to this site, to read messages from my friends. I end my day reading the messages. I have not met even one of you but consider you all my friends. With friendships come the little speedbumps that make the relationship interesting and worth being a part of. This is nothing more then a speedbump. I am a natural at letting things go, quickly, and this one is gone for me. I can only hope that any words I clumsily typed did not cause any long term damage to any of my relationships on this board.
Rosie, I cannot tell you how much respect I have for you. When I received Danny's book a few days ago with all the pictures my daughter and I both said how you looked JUST like we had thought you would.......very warm, happy and loving. Heathers story was the first one on this board that tore at my heart when I first became a member. I showed her picture to all my older daughters, telling them about her. As a fellow mother I admired the courage you showed taking care of her and still coming on this board after her battle was over. I am not sure I could have done the same.
So, I hope this will all end with none of us feeling like we need to tip toe with our posts and hold back how we feel.
I promise to try to express what I mean better in the future and to not be so narrow minded about the silly peg tube.
Love,
Minnie

Rosie and all else involved in our OCF drama thread:
Each and every one of you are an important part of my life. One of the first things I do in the morning is come to this site, to read messages from my friends. I end my day reading the messages. I have not met even one of you but consider you all my friends. With friendships come the little speedbumps that make the relationship interesting and worth being a part of. This is nothing more then a speedbump. I am a natural at letting things go, quickly, and this one is gone for me. I can only hope that any words I clumsily typed did not cause any long term damage to any of my relationships on this board.
Rosie, I cannot tell you how much respect I have for you. When I received Danny's book a few days ago with all the pictures my daughter and I both said how you looked JUST like we had thought you would.......very warm, happy and loving. Heathers story was the first one on this board that tore at my heart when I first became a member. I showed her picture to all my older daughters, telling them about her. As a fellow mother I admired the courage you showed taking care of her and still coming on this board after her battle was over. I am not sure I could have done the same.
So, I hope this will all end with none of us feeling like we need to tip toe with our posts and hold back how we feel.
I promise to try to express what I mean better in the future and to not be so narrow minded about the silly peg tube.
Love,
Minnie

Glenn,

You are right. The post had gotten way out of hand. It did seem like we were getting back on track though, and I was hoping we could stay there. But after a 2 hr wait, I think perhaps you are entitled to a touchy post or two! Hope the appointment went well once you finally got in. Are you still doing chemo? Hope it is going well for you. Take care,

Minnie,

I agree. We need to put this behind us. I obviously totally misinterpreted your meaning. And possibly you did the same with mine? Anyway, there are no hard feelings. As far as I am concerned, things are back to normal.

As to me continuing to come to the forum, believe me when I say I have tried to stay away. Sometimes the stories here bring me so much pain I don't know how to bear it. But, as many as you have said, we are family! Coming here was what kept me sane during Heather's ordeal and every time I try to stay away, I find myself being drawn back. I think, in a way, it is also a crutch for me. As long as I keep OCF a big part of my life, I can put off getting back to the rest of my life. I have finally admitted to needing help and recently went on an anti-depressant. I was one of those who could see the merit of other people taking them, but always figured I didn't need them myself. Wrong!!! I do need them and now that I have admitted it, maybe I will finally be able to move on with my life. I don't think I will ever stop coming here completely, though. It truly would be like leaving family and, truth be told, I am closer to some of you than I am to my own siblings. Well, enough of the maudlin stuff. I'm headed to bed. Goodnight all!

Rosie

So...tell me what you really think about the PEG tube!! Just kidding, please don't hit me.

On another note, did anyone other than me have the "button"? It was designed for people that wanted to maintain and active lifestyle in spite of the need for a PEG. It extended about an inch or two and had a one-way valve that prevented any leaking. It came with two tubes, a thicker one and a smaller diameter one. One was for feeding and meds via syringe and the other for a feeding pump. It was put in at the doctor's office in 5 minutes or less. It was so cute that I still miss it, sometimes. NOT!

I am certainly one unique dude...I was a poster child for the nasogastric, had a PEG and a button!


Love you all!

Ed

How the Heck did I miss out on this one!??? Two whole pages of "diss-cussion" and not one word from me?

I must have been in a vacuum or something!

For the record: I get the last word :p

Been wondering why you haven't posted much lately Mark. Hope it's because your working long and productive hours. Alot of the questions posted don't fall into my experience with oral cancer. I like Minnie read the postin's daily to keep up with all my friends and to make new ones. Think about the growth of this website in just 1-1/2 years. In late July of 03 I was member number 853 and now there are over 1700 members. All of us have had a small part in acheiving this. We all know Brian is the main man
on this website. I wanted to Thank You Brian for everything you do for us.
I think I got the last word in on this one Mark!!!

Brian, Could you send this thread to the recycle bin in a day or two?

Love Ya All, Danny Boy