Carol, I can only imagine how depressing and frightening it must be to hear those words again.

I have had surgery for SCC on my palate, so when you get a plan, don't hesitate to post here or to write me privately to ask anything you wish. There are several of us here on the forum, and we will be glad to help.

XO

Carol, How depressing and frightening that news must be for you. As Sharlee said, just thinking about hearing those words again is overwhelming to me. I hope they have caught it extremely early.

You are in my thoughts and please let us here support you as you go through your treatment for this.

Minnie, I have been concerned about not hearing from you too. I was afraid it was because you were feeling depressed. Please don't feel you can't bring that here. You have fought your way through so much you are entitled to feel exhausted and depressed. Just know that many of us can deeply empathize with that and we love you and have our virtual arms around you.

{{Minnie}} <--this is a big cyber-hug. The best I can do.

Nelie

Thanks Everybody, I will have the petscan Tuesday and meet with my surgeon and another surgeon to go over things......scary stuff, this is being called a second primary scc soft palate, I believe I have had my maximum radiation my surgeon will talk with my oncologist about that, find out more on Wed. Please pray it is contained in the soft palate....Thanks so much, Carol

Good luck Carol. You are in my prayers.


Minnie,
I hope you are feeling better soon. I am so sorry this has got you down, but if anyone here on this forum has a team of caregivers, it has to be you! Hope your spirits are picking up.
Love,
Donna

Carol, since you joined OCF in 2004, you know that you have so many friends and well wishers here. Hoping for the best for you. Amy in the Ozarks

Carol...I'll share my experiences more after you find out exactly what you are dealing with. You can ask me anything. My lesion, however, was confined to the hard palate (and the maxilla, which yours doesn't seem to involve, thank goodness.) The soft palate will have some similarities and some differences. LEt's just wait until after Tuesday.

My heart goes out to you. I can't imagine hearing those words again, but you did it once, and you know you can do it again.

Minnie, I, too, am so very glad to hear from you, but please don't feel that just because you have been the strong supporter of everyone else that you can't show your needy side here. We've all been there.....and....ask Carol...ANY one of us could be there again.

You and Carol share much, in that you both are facing a second round with this beast. You can do it. Please don't close yourself off from us!!

XO--Colleen

Thanks guys. I know how supportive this board can be......it was there for me when I first found it, shortly after finishing radiation in the summer of 2003. I also remember how it would upset me and SCARE me when I would read that someone four or five years out was facing this cancer again. I don't want to make anyone on the board feel that way.

I've learned alot about myself the past couple of weeks. First being that I'm stubborn and won't listen to anyone. Second, that I'm a much better caregiver and supporter than I am a patient or a "supportee", if that's even a word. I detest being weak and that's exactly what I am right now, pure weakness. Full of fear about my families future. If I don't beat this thing, all I have to do is die. My husband and girls will have to learn to live without me and that horrifies me, keeps me up at night. I just wish this wasn't such a strain on so many other people.........why can't I be a 46 year old spinster that only has a cat that will be sad if something happens to her!!! It's overwhelming to me right now, we had all just started to dare to feel safe and now I see the tension and worry right back in all of their eyes. And it leaves me not knowing which way to turn, what to do, all of that. Do I make plans in case I do die from this in the near future? Or do I go on as if I'm some kind of wonder woman whose invicible? Just the thought of one of the girls marrying and giving birth........and feeling sad that I'm not there makes me feel weighted down, spins my head around at times. There, I unloaded a bit. So much to think about, but my husband has finally pounded it into my head that I need to just think of me, get strong, and take it a day at a time. My older girls tell me the same thing.........the younger three are great, but they are still young and still need so much from mom but won't come to me for anything bless their hearts.
My mouth feels better, although I still can't eat but I AM talking pretty well, can even talk on the phone and be easily understood. I'm happy for that. My three year old grandaughter, Mia, comes in the door whenever she arrives hollering "Nana, can ya still talk today?" That does make me laugh, she's such a character. I would choose good speech over being able to eat any day to be honest. My girls are TALKERS! The even talked about skipping Thanksgiving because of me.......I took care of that very quickly today. I LOVE the holiday's, we all do and always have, no skipping one in this house. So, we will eat tons of food on Turkey day and then we're all going to see Fred Clause at the movies.

Thanks for listening everyone. I WILL get it together and figure all of this out.
Love,
Minnie

Minnie thats the reason why we asked for the recurrance board to be added.So you can post anything you like and any one who reads it knows the subject matter and can choose wether or not they want to read on.

You told me once there was nothing i couldnt talk about here and the same appliesto you,so take a dose of your own medicine and dont hide!!!

love liz

Oh, Minnie. SO much to deal with there. The late night worries about what would happen with your family if you die sound very understandable and very hard--but I'm glad your older girls and husband are there trying to help you focus on yourself and on healing from your treatment.

And I'm glad you ARE healing so well in terms of your speech. I agree if I had to choose one I'd take talking over eating. Fortunately, I don't think you'll have to choose. The eating thing will come slower but since talking and eating use a lot of the same tongue movements if you can talk well, eventually you can swallow (at least that's what a speech pathologist who specializes in working with oral cancer patients once told me).

But believe me, I know how much of a struggle learning to swallow can be and my prayers are with you over that.

I agree with Liz, that anything you want to talk about is OK here--and if you are worried about scaring people, you can post on the recurrance forum (which I read). I do sometimes find it scary when I read about people 4 or 5 years out with recurrences but then I remind myself that if that is going to happen to me, there's not a lot I can do about it at this point and seeing other people like you do battle in a second round, being honest about how hard it is, is oddly reassuring. It reminds me that if I have to go through that, I will somehow find it in me to do it too.

As for Thanksgiving, cooking Thanksgiving dinner is where I learned that I can get completely into cooking good food even when I can't eat it as long as my loved ones enjoy it. The last several years my parents have come to visit--this year it will just be my Mom since my dad passed away last month so I'm trying to find other people to invite who don't have a family to be with since I want to cook a lot of food and don't have the big family you have.

Anyway, my thoughts are with both of you, Minnie and Carol, as you fight the good fight.

Nelie

Good Morning All...thanks for the wonderful responses to Minnie and myself.....Minnie you know my thoughts and prayers are with you, I loved you from the time I met you (even before) I am glad your speech is well, the eating will come.....write to me or call me whenever you want......Love, Carol