sunshinecaregiver
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I have no clue about what to give a person who is on an IV, but our Dr has prescribed a nausea medication (generic name is dronabinol) which is a generic form of marijuana and it works. Once a day is enough for us now, we tried twice a day, but that was not good for us. For appetite Megace is one medication that will cause a patient to eat and eat some more. Mom went from less that 100 to 114 in about six weeks and was on a continous “snack” from morning to night—get ready to spend big bucks at the grocery if it is prescribed! I hope something works for you.
Wish we could all give you a group hug! I know how you feel, because my Mom is fighting cc also. She was given her time frame and she simply said OK and that she was not going to dwell on it and was going to live every day to the fullest. Some days are full of “ick” and others are great (we get to talk, cat nap, snack, chill). Just go day by day and remember we are here for each other.
Hang in there. True friends don’t judge…they support you. There is no special “time” allotted for grief. It can be a very vulnerable time. Go to the therapist and keeping up the good work.
Thank you for addressing this issue. My father died on Dec 29 years ago and now Mom is sick with cc and looks like we could have a bleak holiday season again. I welcome all ideas to make the holidays fun for the little ones, meaningful for the adults, and not dreary for any of us. It always makes the good times a little less fun when there is a memory of a missing loved one. I think the memorial service is a lovely idea for the family to share and move on from their grief.
Someone has already stated we need a famous person/spokesman to have a loved one or themselves have cc and only then will the disease be recognized and research started. It seems strange that the only time we get help for causes is when a rich or famous person draws attention to the problem. Only then do people take action to help
Time is a very precious thing. We had one Dr give us 3 months and another gave us a year IF we were lucky. We haven’t won a lottery of money, but we still have life. My Mom had stents for jaundice relief, but no other surgery and is going on with life and NOT dwelling on her death. Right now she has lived 2 and 1/2 months past the year marker and she is still doing “fair” by her personal assessment. We do have confusion at times, we have pain at times, but we have laughed and talked about so many things. Enjoy the good times and do the best you can during the bad ones. That is life.
Goodness gracious! This sounds like my Mom. She has good and bad days, but we are trying to make the best of all days. She is so tired and yet she is so strong (able to walk, has confusion but feeds herself, dresses, ect) she says she is ready for the end, but her family is not. We can’t believe what this disease has done to her. I never knew she was “old” until I saw her in the hospital last August 2009. She has always been independent and very private, taking care of her home, business, and life. I am like you, not knowing what will happen next or how to take care of her. Her nurse told me, “Don’t worry, you are doing exactly what she needs…your showing her you love her.” Remember this site has so many others going through the same problems you are and they will post and offer advice when they can. Take care and blessings to all of your family.
You can tell the great Drs by their interest in new subjects and treatments. The Drs caring for Mom welcomed my input and even used information I had printed in my “educate myself first” before her hospitalization. I tried to be knowledgable so I could ask questions and add to information that I had already gleened from all of the internet sites. This organization was discovered after Mom came home, but I sent it back for the Drs to use for new patients. Every person helping another…isn’t that a wonderful thing?
This site has provided insight to so many of my questions. It has provided education on patient care, different symptoms/situations and given me a heads up on many problems I might encounter. I love the site and have sent this web address to the Shands University of Florida teaching hospital for a reference for patients and doctors who are dealing with cholangiocarcinoma. Thanks for being there for so many of us assisting family and friends or fighting the disease. I have felt so alone and helpless and this site always makes my day go better.
I have been searching for information and help with my Mother’s diagnosis of cholangiocarcinoma. When I found this site I was so elated, I have learned more here than from the Doctors or hospitals. Thank you to all of the patients and caregivers for the information and hints. Everyone has been so helpful.
