Forum Replies Created
Thinking of you, Lisa.
Figured I’d throw in my two cents on this discussion (man, do I go through my pennies this way!)
I don’t expect to be a longterm survivor but I have already survived two “edcuated guess prognoses”. I think we can al reasonably have a bit of hope that so little is actually know about CC that so-called long-term survival is a possibility, statistically, for at least a few. One day they’ll figure out why.
My own case: tumor first seen iin March 2008. Failed effort at resection in Sept. 2008. Have declined chemo and radiation not possible given location of tumor. Tumor did not grow for about a year but it is now; there is also a second one within liver. I certainly don ‘t feel well and struggle with symptoms, but am not nearly as sick as I “ought” to be by now.
I just don’t think enough is known that no hope is possible. Now the emotional turmoil on the other hand — there is a whole other topic.July 9, 2010 at 3:01 am in reply to: pet peeves of cancer.the small stuff i hate. go ahead and add your own #38632
I hate when somebody looks at me and while he/she does not say a word, he/she is clearly thinking “I thought people were cancer LOST weight. What’s up with her?”July 5, 2010 at 9:42 pm in reply to: pet peeves of cancer.the small stuff i hate. go ahead and add your own #38629
Amen, Betsey!July 5, 2010 at 4:29 am in reply to: pet peeves of cancer.the small stuff i hate. go ahead and add your own #38627
Oh wait — being accused of “playing the cancer card.” That’s a favorite too.July 5, 2010 at 4:27 am in reply to: pet peeves of cancer.the small stuff i hate. go ahead and add your own #38626
How about: “You don’t LOOK sick!”
Please know that we are all thinking of Sophie and you at this most incredibly difficult time.
You were so right about how weird and cruel this disease is — the lack of jaundice, the very different paths it takes with so many of us.
It sounds as if your family has made every effort to love and care for Sophie, and that has to be an incredible comfort to her.
I feel just so awful. I have always felt sort of like Sophie and Lisa and I were sort of odd cyber-soulmates because we all were diagnosed around the same time and had similar circumstances in terms of age, accidental diagnosis, and a lot of other things.
If you can, Hollie, please let Sophie know that Irene in NH sends her love. Truly.
One more thing: here is a link to a study concerning anti-androgen and pancreatic cancer: http://www.springerlink.com/content/j1n733q737334482/
Welcome to our world — nobody wants to be here, but our residents are the most kindly and friendly you will find.
SOrry about that long battle to get a diagnosis — CC is like that; typically very hard to diagnose.
I am sure folks will have suggestions for questions, so I will just briefly toss in my two cents.
First, please get a second opinion, no matter what this doc offers, promises, orotherwise tells you. Docs, like the rest of us, have subjective feelings and they do come through some times. And ultimately, if you talk to two docs and they to see things in the same way, it is a comfort.
Obviously you want to know of potential for surgery, radiation, and/or chemo. Chemo has a bad track record with CC, but many folks feel like it is still worth a try. Those are personal, quality of life decisions we all have to make.
I would also ask to get involved with a palliative doc early on. These docs are not just focused on end of life; they are concerned with quality of life. I wish I had agreed to see the palliative care people much earlier than I did.
I;m sure others will offer more advice.
We’re thinking of you and your family.
Take good care.
Hans and Kris:
We are all sending every single good thought your way…I know you can feel it.
I appreciate all of your replies, ALL of them.
I don’t know what I will do, but I do know that for whatever time I have, the folks on this board have been an immense source of support and have even helped a little when I’ve felt like the most lonely person in the universe.
Peace to all of us. Even me.
Look. No offense, and I know faith is a comfort to many people here, but I do not believe that this horrible disease is any part of God’s plan.
Lisa — of course you are already famous among us!
Can’t wait to see the article — and I am so glad you voiced what so many of us feel about the support for the “popular” cancers.
Take good care.
So very glad to hear from you. But am so unhappy with all the current horrors.
I continue to send you my good thoughts and good wishes. We all have to learn just to find those moments that make it worth going on, don’t we?
IreneJanuary 6, 2010 at 6:24 pm in reply to: The National Financial Resources Guidebook for Patients #33597
Just an FYI to folks: this Patient Advocate Foundation offers a co-pay program to assist those of us with financial challenges with co-pays, but cholangio is not on their list and at this time, it appears that people with this diagnosis are not eligible.