tiapatty
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Charlene,
I imagine that hospice has answered this question before so I would ask them.
There is usually an organization that can assist with burial costs, doing a quick search I came up with this organization that might have some info:http://www.funerals.org/affiliates/CalHi/
United Way operates a hotline that provides referrals for all sorts of needs, just call 211 from within San Francisco. Outside of San Francisco, call
(800) 273-6222.Also, the San Francisco Department of Human Services:
170 Otis Street
San Francisco, CA 94103
Telephone: (415) 557-5000I will keep looking.
Just found this one in the Bay Area:
Librarian Patty
Kara,
You are not alone and neither is your mother, she went in my mother’s company on July 31st.
Patty
Jolene, what a lovely post, you truly expressed how, with the help of this board, no one here is alone. It’s strange, when you have a unique experience of something, whether good or bad, it bonds you to strangers who have had the same experience. My mom is gone but I am not done fighting cholangiocarcinoma.
Patty
I am sorry to hear your sad news, I hope that your husband was able to come to terms with the end and that he is at peace.
Irene,
After witnessing what my mother went through, I recommend trying to do some weight bearing exercise if you are able, especially for the leg muscles. I also think that hospitals should do more physical therapy with people when they are still in bed, provide some resistance exercises they can do even if they are not ready to walk. Once the leg muscles go, it is really hard to regain that lost ground.
Patty
This is Patty Librarian. Rick, we need to talk, maybe by phone, to see if there is a way we can catalog the board, assign subjects to posts, like a library catalogs its collection. Right now I am too busy with arrangements for my mom but if this is possible, it might make the board more functional. I will do some research when things calm down for me.
Sophie,
What is your location? My mother slipped away last night and we may be able to give you the Xeloda she did not take, they are 500mg.
Patty
I don’t have any experience with this but here are some links with info:
http://www.cancer.gov/clinicaltrials/learning
http://www.clinicaltrials.gov/ct2/info/understand
http://www.nlm.nih.gov/medlineplus/clinicaltrials.html
https://www.ecri.org/Patients/References/Pages/Clinical_Trials_Patient_Reference_Guide.aspx
http://www.mayoclinic.com/health/clinical-trials/DI00033
http://www.fda.gov/oashi/clinicaltrials/
Librarian Patty
I can’t answer this question but there is a discussion about this in an earlier post in the Chemotherapy section of the board, see:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=71
and here:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=948
Patty
I am relatively new to the board and didn’t know Barb as well as some but from The Commander’s posts about her and her son, I can see she had a great spirit. It seems to me that if you look in the dictionary under “valiant,” you’d get an idea of the woman she was, it is a great loss.
Patty
Mark,
I am so sorry to hear that your mom is not a candidate. I think the worst part of this cancer is how helpless it makes you feel, when you love someone you are prepared to go to the ends of the earth for them and it’s hard to accept it when you are told there is nothing that can be done.
What’s hard, too, is that when people hear the word cancer nowadays, they think of it as something that can be fought for years, I can tell that some people I have been updating on my mom’s condition just don’t understand how she can be in hospice care and clinging to life only 8 months or so after diagnosis.
I am so grateful that the helplessness that Mark Clements’s family felt was channeled into this supportive foundation that has already begun to make a big difference, I know it has been a refuge for me.
Patty
I completely understand your concern. My mom’s chemo was also delayed until 3 months after her surgery because the oncologist said she could not do anything with her, she was so weak, and I wonder if it made a difference. I did not know at the time about photodynamic therapy (PDT) and wish I had, the side effects are minimal so maybe my Mom could have tolerated it. There is an article in the Medical Therapy section, here is the outside link:
http://www.eurekalert.org/pub_releases/2008-04/uovh-clc041508.php
Patty
It sounds like your Mom is still in pretty good shape but not able to tolerate chemo. She might be a candidate for photodynamic therapy (PDT). The side effects are minimal and it is accepted treatment in Europe, there is an article in the Medical Updates section, here is the outside link:
http://www.eurekalert.org/pub_releases/2008-04/uovh-clc041508.php
I have posted on it before, see:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1658
Patty
The board can get confusing, Lisa posted that her mom passed away in the In Remembrance section, see:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1595
