Forum Replies Created
As is the case with any service or product, it is important to weigh your options carefully before deciding on a hospice program. While nonprofit hospice organizations still exist, in many areas hospice has become a large and lucrative business. Changes in health care regulations have also placed added pressures on doctors and hospitals to encourge patients to enter hospice rather than continue to receive expensive treatments. Hospice is often the right decision and many people on this discussion board have found it extremely helpful. However, make sure you fully understand what services you will receive and what rights you will give up before you sign the paperwork. This will ensure a less stressful experience and fewer regrets in the future.
I’m so sorry for your loss Shelley. I lost my husband three months ago and know what a difficult time this is for you. Please take care.
I’m so sorry Nancy. I lost my husband Terry to cholangiocarcinoma just three months ago and understand what you are going through. Time does help. Take care of yourself during this very difficult time. Linda
Hi Olga. Some people don’t express tumor markers such as CA 19-9 or CEA. My husband’s were always in the normal range, even when his disease had progressed. ALP is one of several liver function tests usually monitored during treatment. Small fluctuations are often not relevant but they look for trends. Take care of yourself. I know how difficult all this is.
Hello all. I’ve been out of town for a few days so I’m a bit late in reporting on the webinar. Unfortunately, I had some technical problems and missed the first part of it but I did receive some useful information and will post it within the next couple of days. Jenny already gave you the most important information – it’s always important to do your homework when chosing a health insurance plan and it’s even more crucial for cancer patients. I’ll provide more details soon.April 30, 2014 at 3:34 am in reply to: Advance Planning: wills, trusts, powers of attorney etc. #81993
I’m glad you found this helpful. As some of you may know, my husband Terry died of cholangiocarcinoma on February 15. He was the most optimistic person I have ever known but he did realize the importance of advance planning. The steps we took to make sure all of our affairs were in order have made my life much easier during the past 2 1/2 months. I am also fortunate to know that the decisions I made about his care at the end of his life were in accordance with his wishes. This gives me a great deal of peace.
My thoughts are with you Percy. I will always be grateful for all the good advice you provided during my husband’s illness and I hope you will be able to keep helping others for a very long time. Take care. Linda
Hi Judith. I would suggest you post your questions in the introductions section of the board as you may receive more responses. The discussion board tends to be a bit quiet on the weekend but you will hear from many people on Monday, including many famliar with doctors and hospitals in LA. Cholangiocarcinoma and hepatocullar carcinoma are different diseases. There are several different types of cholangiocarcinoma, including hilar. You will receive a great deal of help and support on this board so be sure to post any questions you may have.
I’m so sorry for your loss Michele. I know we exchanged some posts a few weeks ago when our husbands were both so ill. My husband Terry died on February 15. I thought I was prepared but it was still such a shock when it actually happened. Please know that you are in my thoughts as is Stella. It’s hard to be strong but we will all get through this somehow.
Thanks Marion. I thought you were out of town or I would have contacted you in the first place. It’s possible they made some errors in entering the information or used an incompatible browser. I just wanted to report the feedback I received in case there was a problem with the site.
Ladies – Your comments have been very helpful to me. Tomorrow will be two weeks since Terry died. The first week I did very well – lots of people around and so much to do. This week has been harder. I’ve discovered the best thing is to just figure out how to get through each day and not think too much about the future at this point. I’ve joined a bereavement support group too – all people who lost their husbands or wives to cancer – and it has been helpful to talk with others who understand. It’s hard but I know I will be OK.
Wishing you the very best, Lainy. You provide so much support to everyone on this board. Now it’s time to focus on taking care of yourself. Remember there are many people here who care about you. Linda
Thank you so much for your kind responses. We have planned a memorial service and reception at the beautiful Morton Arboretum, one of Terry’s favorite places. In the event anyone would like to read Terry’s obituary, here is the link:
Hello Michele. I’m so sorry things have reached this point for you. I am in almost the exact same position and it is the hardest thing I have ever experienced. I love my husband so much and it breaks my heart to see him the way he is now. I know you must be feeing the same way about your husband. I think this will the greatest challenge we ever face but we will get through this somehow. Please take care of yourself. Linda
Thank you Willow and Kris for the helpful responses. They have put him on Lactulose and it is helping a great deal. His amonia has decreased from 115 to 49 and his memory and lucidity are greatly improved. At my request they have taken him off Dilaudid as it seemed to cause very vivid dreams that resulted in confusion. Fortunately he has only mild pain at this point that is easily controlled by milder forms of pain relief. I hadn’t thought about the possible relationship between draining the ascites and the lower blood pressure but that may be part of the problem.