I had surgery two weeks ago. I had Epidermoid Carcinoma and they removed the right side of my palate. I need to clean the area and I'm totally freaked out. I did it this morning but not very well and I really need to get in there and clean it so I don't get an infection. I'm so glad this website is here. I need so much help!!!!

Welcome girl...I know you'll find much helpful information here..In the meantime, you will be in my prayers. Do let us know how you progress! Lois in North Carolina

Thank you Lois,

That was very nice of you. I guess I should be praying more. I prayed for the Lord to remove the pain and he did I guess I forgot to ask that he remove the fear as well. Sometimes all it takes is to just be together as humans and do as much as we can. God sent me to this website for a reason. My prayers are with you and your husband. Thank you again. donna from California

Welcome Froggiegirl

We are sorry to hear about your diagnosis. This is a frightening and upsetting experience.

You are not alone and this website will help you get through this. There are many knowledgeable, informing, caring and compassionate people here to help you.

We have all been where you are and we will walk with you, and help in any way we can. Keep asking your questions and they will be answered by people who have fought and defeated this disease.

Here is some helpful information about this website.
There are 2 search engines on the OCF site. There is one at the top and one at the bottom of each page.

Dear Froggiegirl, this will help with terminology
.
Dictionary
www.cancer.gov/dictionary
www.ask.com

Abbreviations
http://web.utk.edu/~aalix/abbreviations.html

At the top centers of this page click on the "faq" (frequently asked questions)
Many questions about this site can be answered here.

Everyone here wants to help you in your struggles. We will keep you thinking positive as we battle this defeat able disease together.

If you have problems or questions about

Thank you Petey,

I appreciate the information. I was so positive last week. I knew this was going to be my scariest moment. But all the same what happened? Why am I now so gloomy and sad. I should be thankful that the pain is gone and thankful that they removed all the cancer, I should be thankful that I'm at home and I have someone who loves me dearly. So why do I feel so bad when I should feel so blessed? It's so confusing to me. This disease attacks more than the physical being. If I can just get past this part.

The physcological effects of any cancer diagnosis can be as devastating as the physical implications.When you are undergoing treatment your mind is occupied with the practical aspects.When you are home and alone,all the fears will come flooding in and cause you great distress,as you become horribly aware of your own mortality and the implications for the peolple who love you.
That is perfectly normal,and if it becomes an insurmountable issue,you need to seek professional help from support groups and counsellors.
Knowing you are not alone in your feelings,and actually vocalising them with others will help gain some sense of perspective and control,as will posting for help and advice here.

good luck and good health

liz

Thank you Cookey,

What you said makes so much sense. I am afraid of my my own mortality. Between this surgery and losing my 4 mos. old niece all in one month makes life so scary now. This is a great website and with each passing moment and with all the wisdom that has come towards me I feel I can get through this. I feel better just knowing that what I'm feeling is okay. Thank you so much for writing. It really helped.

YVW

Dear FG,

I am writing to tell you that I will write more later.....but that I have had part of my palate removed also...There aren't too many of us, but there are several on the forum.

Yes, the procedure for taking care of this bizarre surgery seems odd at first, and now it is second-nature to me. You can ask me anything. I don't mind answering here, but I'll have to do it later. I don't know what your dr. has told you. Actually, it was my prosthodontist who told me to get with the program. It helps with healing and toughening up the area to withstand the obturator.

More later.....I'll tell you what I do, or you can tell me what YOU do, or you can ask questions....

I'm glad to find someone else with a similar problem. Pharmgirl's father had a similar surgery also.

Just Two Thoughts.(2)

The OCF should have a "logo" similar to the "yellow pages" called:

"Reach Out And Help Someone!"

Our Theme Song should be: "Hands Across the Water" (Uncle Albert/Admiral Halsey)

--------------------LYRICS------------------

PAUL McCARTNEY
Uncle Albert/Admiral Halsey
by Paul McCartney

We're so sorry Uncle Albert
We're so sorry if we caused you any pain
We're so sorry Uncle Albert
But there's no one left at home
And I believe I'm gonna rain
We're so sorry but we haven't heard a thing all day
We're so Sorry Uncle Albert
But if anything should happen we'll be sure to give a ring

We're so sorry Uncle Albert
But we haven't done a bloody thing all day
We're so sorry Uncle Albert
But the kettle's on the boil and we're so easily called away

Hand across the water (water)
Heads across the sky
Hand across the water (water)
Heads across the sky
Admiral Halsey notified me
He had to have a berth or he couldn't get to sea
I had another look and I had a cup of tea and butter pie
(the butter wouldn't melt so I put it in the pie)

Hand across the water (water)
Heads across the sky
Hand across the water (water)
Heads across the sky

Live a little be a gypsy, get around(get around)
Get your feet up off the ground
Live a little, get around
Live a little be a gypsy, get around(get around)
Get your feet up off the ground
Live a little, get around

Hand across the water (water)
Heads across the sky
Hand across the water (water)
Heads across the sky
Ooo------------Ooo-----------

Isn't the OCF WONDROUS!

With Love, Petey

Petey, you are toooo funny! Carol

Hey Petey...

The good thing is we didn't have to listen to you sing this <<VERY BIG GRIN>>

KC

I haven't received much information. I wash the area out 3x a day. This is my second week doing and it is getting easier to deal with. I guess I'll find out on July 9th how well I've been doing. I don't know how long I need to clean it out or what my future holds regarding this. I have alot of questions I need to ask the doctor.

Hi Froggie!

My dad had a similiar surgery on 5/23/07. He has gotten more and more comfortable with the cleaning of his mouth, palate and sinus area as time goes on. Thanks to others on this board (August), who shared their experience with him in a way that only someone else who had been through this could, he is even more comfortable with it than he was before.

Dad isn't very computer literate, so I come out here and read some of the topics to him and go through the posts. I think it helps him to realize that he is not alone. I hope you find the board comforting as well.

Please keep us posted on your progress.

Hugs,

Joy

Froggie--If you had your surgery only three weeks ago, you are doing more than I did at that point. I had a plate in my mouth for two weeks (a bit too long, actually) that held antiobiotic packing in my sinus cavity. After the plate and the packing were removed, I don't recall exactly what I was supposed to do, but I did NOT go into the cavity....still don't. I was given some chlorhexidine to use as a rinse. Later I was told by my prosthodontist to use a cloth (I use some gauze or cotton ovals that are disposable) to rub the edges of the wound, to debride them and increase healing. I have learned to do this without a thought, though it took a while to be able to do it. I have learned that I can reach in and have more control by using my thumb rather than a finger. I don't go into the area above the palate. I now use warm salt water, made from faucet water and table salt, and swish well, letting my tongue help rub the edges, and forcing the water into the sinus cavity and blowing it out my nose by holding the other nostril closed. It is funny how fresh water is uncomfortable, but the salt water is very soothing and cleansing. I also continue to use the cotton oval occasionally, and I use the chlorhexidine rinse occasionally also, though I find that it stains my obturator. (It also permanently stains any fabric that it touches.)

Did you lose any part of your maxilla and teeth?

Do you wear an obturator?

I hope this was helpful. Write again and ask anything that you wish. Look for my post to PharmGirl......I think that I said most of the same stuff there.

It is nice to find some other people with the same surgery. There aren't as many of "us" as there are for other forms of this disease.

August, thank you so much for all your information, it was so very helpful. So you didn't have to clean the cavity right away? Gosh they made me get in there in my second week.

Too answer your questions, I lost part of my right palate and three or four teeth and wear the obturator. I use a gauze and forcep to get in and clean. It doesn't hurt and it's clearing up very well. I can't wait until this regimen is over. That's why I'm trying to do my best at cleaning the area. I don't go up to high I just get what I can.

The maxiofacil dentist removed all the packing and plate one week after surgery. Then I rinsed with the chlorhexidine three times a day. The second week I started cleaning the cavity area three times a day I'm doing pretty good with it now.

What is a cotton oval and do you think using my thumb would be more effective than the forcep?

When did you stop cleaning the area and when did you start using salt water?

Your information was of tremendous help. It's nice to be able to share this with someone who has gone through it.

Hi Joy,

Thanks for writing and sharing your father's experience with me. It's incredible how we do manage to get used to it in such a short time. I didn't think I was going to get through it but I did. It's an incredible experience and really makes you dig deep down in your soul to maintain the process. But with God, family, friends and this wonderful website somehow you get through it all. People are amazing and we can accomplish so many amazing things.

Send you father my best. He must be very proud to have such a loving and supportive daughter.

All my best,
Donna

froggie girl

I just want to reiterate what they said about being more emotional after it is all over ( Surgery ) For me that is when it hit..And I still have my bad days 5 months later. But talking to people on here and going to counseling HELPS !! I cant answer your medical questions as my procedure was different ..but as far as the just dealing in general..That I can relate to and help as much as I can !

Shar