tiapatty
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Your father’s story really is very compelling, modern medicine doesn’t have all the answers and your father was very brave to go his own way and stare this in the face.
More prayers, coming right up.
Patty
Kathy,
It is one thing to disagree on funeral arrangements when someone’s wishes are not known. Tell your sister when she dies she can make the decisions! Or maybe your father can put her in her place!
The road ahead is a difficult one, I pray he gets his wish to pass quickly.
Patty
Eli,
We are kind of VENTING CENTRAL here so let loose when you feel things getting to you, the empathy here is endless.
You sound formidable, your wife is lucky to have you as an ally. I think the briefcase is good, makes you look like you did your homework, you mean business, and you will be taking names. Your wife could get a t-shirt that says “I’m with the crazy husband” and an arrow pointing to you. That will deflect any hostility away from her, kind of like good cop, bad cop.
I am the resident librarian so I also recommend books, this one looks good:
When a parent has cancer : a guide to caring for your children
Author: Wendy Schlessel Harpham; Jonas Kulikauskashttp://www.worldcat.org/oclc/55000381
Patty
Glenys,
Welcome aboard, it sounds like you have had a fairly good quality of life for the 3 years and that is something to be grateful for and your attitude will certainly help you face whatever is to come.
You might consider posting your holistic methods in the Alternative Treatments section of the board.
Patty
Karen,
I am sorry, I just saw your follow up question to my post about PDT. I also e-mailed you just in case you don’t see this reply.
My mother did not have PDT, I was not aware of it before she had the surgery, I am fuzzy on the details because it has been a few years but I think after her surgery I made a call to Cancer Treatment Center in Zion, IL, and they did not do PDT for cc at that time at that facility, though that may have changed.
Gavin’s father had PDT, if you search the board you will see he has posted quite a bit on his father’s experience.
Patty
I end up crying a lot when I come here and after reading his Facebook posts I am a sobbing mess. He seems like a person who really understood what life was all about from the beginning and from the photos it is clear he lived life to its fullest. The definition he gives of his name is heartbreaking and his posts reveal the clarity he had that cc made even clearer: All is now. Now is all. What he says about women is also very touching, how lucky his wife and daughters were to have him in their lives, I am so sorry they have lost him.
Patty
Confusion can be a sign of hepatic encephalopathy, it can be treated, there are posts on here if you use the search function, here are a couple:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1661
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6566
Patty
Mary,
I am sad to see this news and so sorry for your loss. Tom struggled mightily and you were right there beside him through the ups and downs. You say the credit is all his but as a librarian I say everyone has a book in them and you surely could write one on caregiving and the support and information you have provided others on this board is a selfless gift.
I am glad you were able to share those years together and know that you and your children and grandchildren will cherish them. I saw this quote yesterday and it really resonated with me:
Grief is, in a sense, the bill that comes due for love. ~George Saunders
My take on it is that when we choose to love we risk sadness, yet people choose to love every day so the risk must be worth taking.
Visit us for support when you feel the need, we are here.
Patty
Margaret,
It has been a long journey, Tom was a brave traveler and was lucky to have you by his side, strong and faithful. For the fisherman, here is a poem by one of my favorite poets that speaks of “the other shore”:
Boat
I must launch out my boat.
The languid hours pass by on the
shore—Alas for me!
The spring has done its flowering and taken leave.
And now with the burden of faded futile flowers I wait and linger.
The waves have become clamorous, and upon the bank in the shady lane
the yellow leaves flutter and fall.
What emptiness do you gaze upon!
Do you not feel a thrill passing through the air
with the notes of the far-away song
floating from the other shore?
~Rabindranath TagoreI am sorry he is gone but I am sure that Tom is on that other shore, and that he is at peace.
Patty
Hans,
Kris really brought so much humor to this board and I really miss that, I mean, there are other funny people on here but she really was the leader of the band and we were privileged to be privy to her very unique brand of humor, the kind that has you bursting out laughing at your computer and people are asking you what is so funny? She was a comedienne extraordinaire.
Patty
Elsy-
I looked back at some of your posts, how old is your grandma? And does she have any other health issues? If surgery is not possible you might want to ask about photodynamic therapy (PDT), there are posts here, just put PDT or photodynamic in the search function. Hopefully that is something to focus on learning about until you hear from Dr. Kato.
Patty
Elsy,
Some have posted their vitamin/supplement regimens, here is a link to one post:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4557
Patty
Crystal,
I lost my mom in August 2008 and a poem someone else posted helped me a lot, here is the link to the post:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2690
Patty
Byron,
Well, I guess other parts of your body got jealous of all the attention your liver is getting and decided to get in on the action and invite themselves to the party–how inconvenient of them! I am glad you are on the mend, keep us posted.
Patty
Andrew, that is one smile inducing post, though I am partial to the Hulk. Sounds like your sister is ready to show chemo who is the boss–does she make sound effects? KER-POW, WHAM, SHA-ZAM!
I am a twin so of course I have Wonder Twin powers, I can turn into any animal, including mythological creatures and animals from other planets.
Patty
