Thank goodness you just didn't sit there and accept what that Doctor told you.

The picture of your Mom is beautiful and she surely raised a beautiful daughter!

Emily I am so glad that you have some hopefull information, and more resources to look at. I will keep your mom and you in my prayers. It makes you wonder how some doctors can even be in practice. Especially when a few weeks could have such an impact on life and death. It just really makes me angry that a physician could be so wrong and so beligerant and have 0 reprocussions for his misdiagnosis and attitude. I just can't believe it. Sorry I will quit ranting.

I thought Id call the hospital and see if I could report him but, seeing as he's the chief of staff it's probably all politics and it would be pushed under the rug. What Id really like to do is write a letter to the News and Observer here (newspaper). But really, I have too much on my plate right now and need to concentrate my energy on positive things. I just feel for his patients that may not have family and receive the same news and go home and accept that 'this is it', as he would say.

Thank you again for all the positive support..its helped me get through an awful week

Emily,

I've been following the story of your mom and I'm glad you got a better report today. Don't give up hope and I'm glad you are seeking other opinions. I recently had a recurrence and sought 3 opinions, and they varied greatly (and so did the doctor's bedside manners).

I'll keep you and your mother in my prayers!

Hi Emily,

I'm glad that your Mom is now being offered a treatment option and that the odds actually sound better than what they were when given by Duke. The Doctors can also work wonders with Plastic Surgery and prosthetics so the surgery may not be as disfiguring as you'd imagine. Hang in there and stay positive! Sounds hard to do in the circumstances but it is amazing how much better you feel when you have hope.

Keep us updated, there are alot of people sending positive thoughts your way!

Sue

Oh Emily, I just read your post abot the great appointments you have had. How could I have missed those? Excellent news about the surgery!!!! Im so happy you found OCF and took the advice to get other opinions.

The surgery you are talking about is similar to what I went thru last August. My lower jaw was removed. It was not an easy time at all. At times I wished I had never done it. Now my face and neck are disfigured and people stare. Now that Ive told you the worst of it....I am so happy its behind me. Sure I dont like looking funny, but I love being alive Im almost back to 100% and recently went back to work part time. My ENT has finally gone to seeing me weekly or every other week to every 6 weeks. Some days, I completely forget that I look different so that tells me Ive finally adjusted to my new normal lifestyle.

Your mom needs to push the peg feedings and build up her strength. I found this stuff at walmart, it is 11 oz and has 20g of protein along with alot of other important daily requirements. Ive just run out of it so forget the name but its packaging is purple and silver. They have several good high protein liquid formulas there. Ive added it to my prescription formula along with a can of Carnation VHC. By adding an extra can of formula, it will help build her up in preparation for the surgery.

There have been several other OCF members who have undergone this same operation recently. Maybe they will give you some info too.

Please feel free to ask me any questions.

You all are so sweet. I look forward to checking back here in the mornings
Im also very glad I came here and took everyones advice to find the best care available - I always contemplated going to Houston but you all gave me the extra push. The ass from Duke basically told us we were in the situation we're in now because we didn't come see him first!! - another heartless thing that came out of his mouth.

Christine - i do try to make her do 3 cans a day thru her PEG. as of now its the only way she can eat. since they did the biopsy june 5th her trismus has gotten worse. yesterday she only did 2 cans. Since she came home from the hospital in January, ive been ordering her Nutren 2.0, which I found online. Its 500 calories and 26 grams of fat, 20 grams of protein. She is really bad about only doing 2 a day. Yesterday I tried to get her to do one while we were at the dr office but she was in so much pain she said it would make her sick and she snapped at me for pushing her to do it.
Hopefully after getting settled with her new meds shell stay on top of it

I need to get her to read this forum. She doesnt realize how many others have gone through what she is facing. Christine I think she would benefit from talking with you or at least reading your blog since she is facingn the same surgery

Hi Emily. I'm so glad you had a better doctor's appointment. Your mom is so lucky to have you fighting for her. It kind of makes you wonder what happens when people are in this fight alone. Unfortunately reporting the doctor probably won't matter. They cover for each other. I lost my mom to pancreatic cancer two years ago. She had her pancreas removed 9 months before she died which instantly made her a diabetic. Her doctor that was in charge of her diabetes was a total a**hole. The month before she died her blood sugar was anywhere on any given day from 80 to 650. She had to be rushed to the ER more than one time. We were at our wits end trying to control it. We would call her doctor and never get phone calls back. We couldn't find another doctor for her because there are very few doctors in Delaware who deal with this and her cancer was all through her.

I'll never forget one phone call my sister made and INSISTED in talking to him. He got on the phone and told my sister "stop worrying about your mom's blood sugar numbers and let her eat what she wants, she's dying anyway". Nice huh? We reported him but I'm sure it went no where.

Hang in there! Hugs, Wanda

I sent you a message with my number. You or your mom can give me a call and we can chat.

[quote=EmilyE]I need to get her to read this forum. She doesnt realize how many others have gone through what she is facing. [/quote]If your mom doesn't want to get on the computer to come here, you could print out pages for her to read when she feels up to it.