lainy

Welcome, July Girl, to the best little club in the world that no one wishes to join.
My husband had a Whipple 3 1/2 years ago, yep and he is now 76 and doing quite well. His CC was contained in the bile duct valve. It did return last April where the duodenum used to be but after radiation over the summer and then cyber knife in December he is now totally back to normal. Sounds like you pretty well know what is going on and yes you are right the last 2 tests are to zero in on exactly what is going on. I am so glad you found us as no one is alone here, we are all family. Please feel free to ask, advise or just plain old vent. And please do keep us informed. Good luck on the tests.

Dear Rose, we are so very sorry to hear that you did not get the surgery as planned. Please do not give up hope as you have a wonderful attitude and who really knows what is around the corner. We are praying for you and our thoughts are going out to you.

Marc, how wonderful for your mom to have such a devoted son. You are both in our prayers and please keep us posted.

Sophie, it always warms my heart to see you post. I think of you and Lisa every day. Miss your smiling face on here. Lisa, just tell everyone you are independently wealthy so you took an early retirement!!!!

Hi Kid, I just thought of something that has nothing to do with the tooth but I totally forgot to tell you this in our last email. When you mentioned about trying to keep dad comfortable I wanted to ask if you have tried a sheep skin throw.
Teddy used it when he was in the hospital for 3 months and it really helped.

Hi Rose May. What hospital are you going to? Do you have your own Oncologist you are dealing with outside of the hospital? I would call that ONC and tell him what has been happening. Then I would call scheduling at the hospital, although sometimes they call the day before the surgery to talk to you and to pre register you. You most definitely should not be doing this all by yourself. In rereading your post, it sounds like you don’t have your own ONC. If that’s the case call the hospital and ask who you can talk to as they certainly should not be dealing with you this way. And no, we had no experiences like this from any of 5 different hospitals over the last 3 years.

Thanks Patty, I already did that a month ago. No response. No response from Barbara Walters either, Bonnie Hunt. That is why I was thinking of taking a different direction. I am also thinking that perhaps with us all going off in different directions it may damage efforts made by those more qualified. That is why I was trying to think of another way to attack this. I know I like things done yesterday and with this CC its so very hard to wait while it does it’s damage but we really need to think this through. So glad you and Barbara got to meet. Now you both know how good it felt to meet Marion. Perhaps if we took our thoughts in a different direction and concentrated first on a “meeting” situation we could then proceed to the higher level. Just not sure what to do.

That’s a great idea Tess. The thing would be to figure out where and when we could use him. I came an inch closer by figuring out, I think, that we could use a huge corporation of some kind to help get us out the door. Either that or one of the biggest celebrities on earth. Bottom line is we need to be adopted!