Hi Oprah, Good for you to get "on board". How old are your children? I'm sure your motherly duties can make you so tired, they just don't end because your not feeling well. I can remember how just taking a shower exhausted me. I just wanted to go back to bed! It does get better! Enjoy your time home w/the girls! Now thats a little blessing! Dianne

Christine and Pat,

Yes, I to have a steel jaw. Like Superman or something. My jaw bone was replaced with my fibula from my leg. Doctor said I shouldn't have any problems walking because it seems to be a "extra". Can you believe our body has extra bones? ha ha So I'm actually walking normally. Coming home from the hospital and seeing my girls was great, I looked different but it was me.

Currently,I'm dealing with trismus. I was wondering if I should try to get the DynaSplint but I heard their expensisve. Right now I'm waiting to get an approval from the insurance company for the DynaSplint rep to contact me.

I don't have to much of an apetite but I'm trying to eat more food everyday. I still use my PEG everyday but I try to drink the Ensure once a day. Yeah, real food I do miss the taste but I appreciate the little bit of taste I do have. When I finished radiation I couldn't taste anything.

I try to spend my days watching funny shows, movies, or just a good book. I read my daily word almost each day. And before this I never really read, ha. I've been journaling some of my experiences and some of the people I've been meeting. So right now in my journal I look back to when I came home and thank God for bringing me this far. I get out of the house to get some sun and air which helps change my attitude. At first I wouldn't talk, until my brother kept on reminding me that I need to tell family/friends how I'm feeling because their not mind readers. So now, I try to let them know when I'm feeling depress or just bad and they try to encourage me. It doesn't always help, but its a start.

We can compare notes just send me a separate email. First scan won't be until April.

Oprah

Hi Pat, Glad to see your post. You are not alone. So many here are so smart & helpful, as you already know. My sister came w/me to every dr. visit. I didn't ask questions, I didn't take in any of what the dr. even said! I was to numb, because this whole cancer thing was too much to deal with. I would have to ask my sister...over & over..."what?". So I hope some one can ask ? on your behalf, because you should know what is in store for you. I also had a peg. Do you know, you can put 2 cans w/some water into the bag @once? I loved that, this way your not so bothered by feedings. Food will come, sores will heal ! Rest for now!

Pat, be glad you are not alone. I went thru most including Rads and Chemo and I was so lonesome at times. I came here to our family and found my solace with our friends. These people don't kit, but they saved my sanity at times. LOL I know I am almost there anyway. come here for comfort Pat . It works better than someily because we all understand where you are and where you will be going.

Welcome Oprah and Pat. Oprah, it sounds like you are doing wonderfully - so glad you've gotten this far and are keeping that wonderful spirit! Pat, hang in there. Please know that time will definitely help and that you can find answers and comfort from this site. Will be watching for future posts from you both. Take care - Nancy

Hi, Oprah -
It's amazing what inspires us; you, from being a nonreader to a journal writer!

Despite claims by Norman Cousins, there is no proof that good humor will help you live longer, but it will certainly help you live better. And that's what we all want.

This site also helps us live better. Folks here calm fears, explain the unexplainable, and above all, support us in our journeys, no matter where it takes us. That, too, is important for living better. I'm glad I found it, too.

Good luck!
Marlene

Hi Oprah and Pat and welcome to OCF. Oprah, you have a wonderful outlook and that is so important. Cancer treatment is hard and I'm glad that you were reading here and people were able to help you. Just knowing you are not alone is a huge help. Good luck on your continued recovery.

Hi, Oprah and Pat,

Welcome to OCF. Oprah, my husband had his jaw rebuilt last November. And, like you, they used his fibula and a free flap. He is recovering well. This is a wonderful group of people. You can rely on getting some great support here.

All the best on your journey!

Anita

Wow! I was blown away by all the posts since my last visit to this forum.Thanks for the encouragement! It sure is hard to keep my spirits up. I'm looking for something to do everyday, like volunteer work; something! Anything! Yesterday was my first appointment with the plastic surgeon. My sister, who is an RN, went with me. She's pretty much been my rock thru all of this and she lives two hours away, so that's saying something! Anyway, the surgeon has me scared. Everything I read about jaw reconstruction seems so cut and dry, but they're talking about using a leg bone (maybe the hip but not likely) So, please, can anyone help me thru this? The surgeon says it's about a 12 hour operation for both him and the ENT surgeon who'll remove any lingering tumor. I can expect to be in ICU for a week. How big is the cut in my leg going to be? How much pain are we talking about? What is a free flap? I see a lot of people referring to this. Next week I see the ENT surgeon for an evaluation. Depending on what needs to be done, I may be referred to a Head & Neck guy. If that happens, I have to go to the University Hospital in Newark ( two hours away); Cooper doesn't have one on staff, and since I'm a charity case, I can't cross the river into Philly. Anyway, I could use all the info you can offer to help me get past my fear and, more importantly, find something meaningful in my life! This day to day waiting is frustrating and I can't see the light at the end of the tunnel most days.

Hi, Patcey -

I hope I'm not out of line, but perhaps it would be less confusing if you moved your last post & started your own thread, since you have a lot of concerns that deal with you, specifically.

Peace
Marlene