tiapatty
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Belle,
The anger leaves me at a loss, it’s the only thing I don’t have a response for, I just don’t know what to do or say, I mean, anyone who gets stuck with this disease has a right to be angry. I am reminded of something I saw on a church wall:
O all ye that pass by the way, attend, and see if there be any sorrow like to my sorrow. -Lamentations 1:12
Yes, all cancer is bad, but I think most people with this cancer would gladly trade it for almost any other.
My mom is also in hospice care at home, she is somewhat coherent and she told me the other day that she wants out of this whole deal and I had to tell her I knew it was a raw deal but I couldn’t do anything about it.
She perked up today but is also currently angry and told us to leave her alone. She keeps going back and forth emotionally and it’s hard for those who surround her to make the adjustment, especially her grandkids.
Now I am mad at myself and her because I wish I had pushed her to eat more healthy things, both before and after her diagnosis, since I think it would have given her more time. She has very poor eating habits, she thinks coffeecake is a food group, and she pushed away healthy stuff we were putting in front of her. If I were the sick one, she would want me to eat the good stuff but she is the boss…and stubborn as they come.
I hope your sister goes peacefully, she is lucky that she is not angry and alone. Please know, also, that you are not alone, that strangers who wouldn’t recognize you on the street care more than you know.
Patty
My mother had surgery in January 2007 and all gross cancer was removed but it had spread pretty much everywhere. She is 66 and has heart problems and it was very difficult for her to bounce back from the surgery, it just took her legs out from under her and her decline has been pretty steady since then. Because it took so long for her to recover from the surgery, further treatment was delayed for approx. 3 months. She tried Xeloda in March/April and 3 weeks of radiation in May but it was brutal for her and, in hindsight, I think photodynamic therapy (PDT) might have been a better option for her because the side effects seem minimal compared to chemo and radiation. There are some posts here on PDT and an article in the Medical Updates section, here is the outside link:
http://www.eurekalert.org/pub_releases/2008-04/uovh-clc041508.php
Patty
Charlene,
Where do you live? Is there a respite program in your area that can provide you with some relief? If you’re not sure, try looking here:
http://www.cancer.org/docroot/SPC/SPC_1_Caregivers_Need_Break.asp
You might also contact a local church and see if they know someone who might volunteer. You could also call a hospice program in your area and see if they know of any agency that might be able to provide some counseling for the three of you, to try and air out some of the issues with a facilitator.
Also, I am 38 years old and am finding it difficult to function with the physical demands and lack of sleep, I honestly don’t know how an 89 year old would be able to do it, she must be made of some stuff.
Librarian Patty
Since I’m new I’m not sure but I think this is the debut issue and I would just like to say, what an impressive debut! It has polish and style!
Patty
Lainy,
This is very difficult to go through without family around, one person cannot possibly do it all and shoulder the worry, I hope you can soon be near your daughter. The car is also one of my falling apart places, I don’t even try to stop, just let the crying finish itself.
Patty
The last time she went in the hospital, my mother had fever very bad and the night sweats and I felt so badly for her because she just looked so uncomfortable and I was afraid we would lose her that night but it broke and she was much better and I honestly believe that the fever and sweating help her, that she is sweating out toxins, I even suggested to her to visualize it in that way, that everything bad is leaving her body (she rolled her eyes so I knew she was getting better). My sister who is a nurse said that the cancer may be causing the fever or it may be her body’s response to try and do something, anything. The last 2 days she is worse and no fever and I am more worried without the fever because maybe it means her body can’t get up enough ire to try and fight this anymore.
Patty
I have not been able to post much because I moved in with my Mom to care for her and she did not have Internet service but we finally went over her head and ordered it. I jokingly told her it only cost $200 a month and she sat up a little straighter and said “What!” so I think the shock therapy worked!
My mom is hanging in there and I wanted to let everyone know that her 7th grandchild, a boy, was born healthy and hale on July 3rd. She has set herself some other small goals and, God willing, she will meet them. She still greatly enjoys people and was the hit of the family picnic this past weekend and we almost have to post a ticket taker at the door for visitors, it’s getting to be like an audience with the Queen!
One thing I have not mentioned before is that I am a reference librarian and if you are having trouble locating information on something (a new drug or therapy) I would be more than willing to take a professional stab at finding it, just e-mail me.
Patty
Lisa,
I am Patty from Chicago and I am so sorry to hear about your mother, this disease seems to take over the body so quickly and even when there is some time, it is never enough. It seems like the time you are given, you are trying to figure out what this disease is and before you can get your wits about you, it has already stolen from you.
I am not sure where in the Chicago area you are but if you would like some in person support from someone who is going through the same thing, just let me know, maybe we can meet for coffee.
I am also sorry because I only saw today that you responded to my introduction and were looking for doctor recommendations in the Chicago area and now it is too late, though I see you brought your mom to Mayo and I was regretting that we did not try that.
Patty
John,
How old is your father? My mom is 66 and I really think age is a big factor, from her experience, this cancer takes no prisoners and ravages the body. There is research being done but we find that my mother doesn’t qualify for the trials. It sounds like your father would not qualify either but here is a post I found in the Research section of this board, which offers some hope for those with advanced cholangiocarcinoma:
http://cholangiocarcinoma.org/punbb/viewtopic.php?id=1455
You can find trials at:
http://www.clinicaltrials.gov/
My mother is taking milk thistle and there are posts on here on all kinds of supplements:
http://cholangiocarcinoma.org/punbb/viewtopic.php?pid=7669
http://cholangiocarcinoma.org/punbb/viewtopic.php?id=479
http://cholangiocarcinoma.org/punbb/viewtopic.php?id=1296
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=173
