lainy
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No, no infections just that this nephrosis tube has to be change every 3 months or he could get an infection. Also still waiting to hear from the radiologist on the scheduling of the cyberknife. Thank you for the kind words.
OK to all of you!!! NICE! I have asked about 4 times in the past about this. What about Korea??? Teddy will be 76 and survived Pork Chop Hill….but will he survive this??? I had heard about an Asian Fish some time ago that could be a bearer of CC>
Actually I have found the letters to be more effective. I only used 2 posts but really we prefer the letters. So, we will make this today’s reminder! We have until Sunday to get the letters in. I am not sure that 20 letters between us will do the job. I was thinking bigger is better! An attention getter. So, we shall see what happens. To all you heroes out there just keep the letters coming!!!
Peter, my husband, Teddy, had a Whipple 3 years ago and was diagnosed this last April with a mass where the duodenum used to be. 3 doctors recommended cyberknife the latest and greatest. The insurance company in its infinite wisdom said he cannot have cyberknife until he has had radiation. Of course not! Why should he have cyberknife for 3 sessions and be done when he can go through radiation 5 days a week for 5 weeks only to have cyberknife now in October? I just thought I would tell you that the doctors here said no to chemo (we would also) and that cyberknife is the way to go. I don’t want to add to your ulcers but was not sure anyone offered you this choice. Good to see you on board again. We hope you feel a heap better real soon!
Welcome, even though I hate to say it! Yes, you have come to the right site for messes! What is happening now with procedures as far as your husband’s case is concerned? You will find a whole lot of knowledgeable and sympathetic
souls here. Please tell us about your husband.You sound like the most wonderful son and you are doing all you can just by showing the support you have shown. We learn in time to be very strong and to not let down in front of our loved ones. I work part time and have found that is the best thing as then I can recondition and face what I have to face.
I have to say to all on this site I found a great diversion. My daughter gave me the sound track from the Broadway play Mamma Mia! As soon as I get in the car I put it on. Such wonderful happy music and I have found it to be a great way of soothing my brain for awhile. Sorry, I digressed. As we say, stay strong
and know that there is not much more you can do except what you are doing.
Unfortunately with CC the day one is diagnosed is the day it is taken out of our hands. Just show lots of love!!!Thank-you all!!! I am feeling so good about this! And if Oprah turns us down we will not stop. We will then find out how to get started in Washington.
To e-mail Sophie or me, just look at the left of these posts where our name appears and you will see the words e-mail. Click and write! If you have a problem just use ” lainy@wbhsi.net”.Let’s just say we have to begin somewhere. Right now I feel like I have to do something so that “MAYBE” no one will go through what my husband is going through. Have you ever noticed on any shows or written matter about Cancer, Cholangiocarcinoma is NEVER mentioned? It was not even mentioned on the big telethon last Friday. There are too many on this site who are connected in some way to people dying too young, being diagnosed too late, what is late when one has no symptoms, having nowhere to turn because there is nothing even resembling a cure? Insurance companies denying tests because they do not know enough about CC. Maybe Oprah is not the answer but we have to try something. I simply refuse to believe that all these wonderful hero’s have gone and no one is going to fight for them. By the way, I doubt very much that Oprah’s staff will read any of these notes on camera. Its purely a means to get us representation on the show and hopefully get something started here. Who knows maybe we can get Walter Peyton’s family to appear…IF we are invited.
Sophie, as usual you made my day! I am past hula skirts but am a short, white haired grandma who is very tenacious and when I fight for the under dog I know no brick walls! So glad you feel better. We also go to Trade Joe’s. Where do you live? I would say you and I would get along just fine!!
Well guys, so far I have had only the one negative comment but will email
Stacie and ask her about it. I was never going to include names on the ones that are from the “past”. Just a first name. It was an idea to send a bunch or notes to show this is “dead” serious!
I will let you know what the board says. I was too lazy today to write her, one of a caretakers “down” days. I am just lying around watching stupid movies!Welcome Gale and you complain all you want….don’t ya think you earned that right!!! As long as everyone complains we know they are hanging with us and we think of them not as complainers but as heroes!! Keep up the good work and I would not be too surprised if someone on this site will have an answer for you.
OMG! Lisa, I just re read my note and I didn’t mean I was glad you “caught” the infection rather that you stopped it! OK so this one should have gone under jokes!!! Hope you are feeling much better today!
Hi Lisa! You are so right about listening to your inner body! I am learning more and more that we have to be our own primary doctors. So sorry you have to
be in the hospital but glad you caught the infection as quickly as you did. Just where you want to be to watch Saturday night TV! UGH!
Teddy finished his radiation Wednesday and has had a very rough weekend as the doctor said he would. He is a tad better tonight. Now we want to see you get better. Stay strong, keep your spirits up and with your attitude you will beat this bump in the road.
