louise

Gavin,
I believe in the healing power of tears. They are water of life. Thus, I was sad to hear your news and willing to let my tears fall for all of us going through difficult times. I think I spent more time in the hospital in the last 2 months than in any previous 3-month period of my life, but I’m home again and looking forward to Christmas with my family. I believe you and your Mum have the strength to get through the subdued Christmas this will probably be for you, but I will continue praying for you.
Louise

Michael,

Yes, the statistics can seem grim and depressing, but they are based on history. Statistics are not good predictors of an individual’s results. Most of us on this site have gotten discerning about what sites we visit, because the depressing ones don’t offer hope or even much good advice. This site, however, manages to share encouragement, results, and information that makes for a great resource. As you become an informed advocate for your loved one, the doctors will consider you part of the caretaking team. As long as your dad is informed, he will and should be encouraged to make all the decisions he can handle.
“They also serve who only stand and wait” was said about members of the military, but it applies to all the caretakers who want the best for their loved ones. By educating yourself and being prepared with your list(s) of questions, you can help the doctor stay current and consider alternatives. A good doctor appreciates your input, because they may know the medicine and the “norms”, but you know the patient in ways they don’t.
My cc diagnosis was in May, 2007 with jaundice, ERCP, and stent in the bile duct, but my cancer was extra-hepatic. I have not had chemo and radiation simultaneously, but I have had both. Even if you start a plan and only have one treatment, it is still the patient’s option to say no, I don’t want to continue that. The side-effects are more than I want to deal with. What else can we try? Have you considered Gemzar/Cisplatin?

My suspician is that many of the sites you visited were not very personal and focused on the stories that had short time between diagnosis and death. One of the tings I value on this site is that we have patients who have lived 3, 5, 7, 10 years or more. And what’s fascinating is that they share stories in details, what they’ve experienced, what they expect to try next, what changes they make and why, what now seems “normal”, how faith has helped. And the people who’ve survived longest still have lists of options to try in the ongoing battle.

My Mom was also diagnosed but at the age of 86, she chose not to pursue radiation or active chemo. When she chose a low-dose pill to take at home every day, her oncologist didn’t think she would last a year. Prayer was her best ally. She lived almost 3 years after that, passed away Aug. of this year.
When the patient makes informed decisions, they tend to do well and need all the support they can get, no second guessing. And if the doctor doesn’t agree with the patient, fire the doctor and find one who supports the patient’s choice.

Hope this helps. Gotta run. Need to be at the hospital in an hour, having blood transfusion (2 units) because my hemoglobine dropped to 8.3 or something like.

Post as often as you like, you will get responses.
Louise

Carlos,
As Marion indicated, this is not a one-answer-fits-all. Please take notes throughout the appointment. In fact, don’t start with a blank page, start with all the questions that occur to you now and write them down. The amount of information to be conveyed both ways can be overwhelming and if not written, it is easy to forget what was asked or said. I don’t know how alert/informed your mom is or wants to be, but most patients benefit from having an advocate to ask questions. Ask to your heart’s content. Let your mom take the lead, but if she doesn’t want to ask questions, you should then start asking. Most doctors will provide the patient with answers to any asked question, but they don’t often volunteer the possibilities or the unlikely events. Many times, when the patient describes symptoms, the doctor responds with “that is normal.” If I had known it was normal, it would not have worried me as much, so I like to ask what to expect as well as what alternatives I have. An iimportant part in what treatments to follow-up with is whether we are dealing with quantity of life or quality of life. As a patient, I’m fighting for every minute of life I can get, but the day may come when no treatment is expected to help me get better, and treatments could merely prolong the pain. That might be when I would consider giving up. My mom was in her 80s when diagnosed and preferred staying home with little treatment. Her oncologist didn’t think she would live a year more, but she almost made 3 years anyhow. So even if a majority of the people on this board all recommended chemo or radiation, they could all be wrong. If your mom is willing and interested in making that decision, we would all support her in that. If she wants you to make the decision, go with your instincts and you will be right.
Hang on for the ride of your life! Do you like roller-coasters?
Keep smiling.
Louise

Kris,
I think I can relate to your feelings. My initial diagnosis was in May ’07 so I’m approaching the 3-year survival point. I’ve recently been experiencing the worst pain of my life due to blockage near the kidney. About 2 weeks ago, I requested (and received) help for pain management. I have had lots of Dr appt and treatments. Yesterday, they inserted a stent that will probably need to come out in 4 months. The question to answer at that time is if it will need to be replaced or if the coming chemo/radiation will shrink the tumor that has caused blockage. Though my bowels are not back to normal yet, the stent should prevent the kidney from experiencing permanent damage. So far, my creatinine count has been improving.
I don’t know if you have done any funeral planning, but Tom and I visited the local funeral home about a year ago. We bought a cemetary plot and made plans. We ordered our headstone, and it is beautiful and meaningful. When Tom’s Mom passed away 27 + years ago, he and I were the ones who met with the funeral director and felt the stress of needing to make many decisions while dealing with grief in a short period of time, wondering what Mom would have wanted, and how to involve the family members who needed to work through their own grieving. By doing our own planning, we were able to avoid the rush and wondering about the deceased’s wishes. The planning almost felt like planning the biggest party of our lives. Tom asked the funeral director about something that would not have occurred to me. Many people associate black with mourning and the dominant color at many of the funerals I’ve attended was black. I had told my daughter I don’t want a sea of black when my time comes; I want a full rainbow of color to celebrate the life we’ve had. So, our funeral director is going to have a florist color 200 carnations. If 200 people come to my funeral, each will get a carnation and I’ll have my sea of color like I want. The headstone is in place and I’m discovering how peaceful the cemetary seems. I sometimes stop by just for another look. We ordered a statue of the Good Shepherd, so our plot is not one that should require a lot of searching on foot when someone wants to visit. My sea of carnations may compare to your year-round blooms of color at the cottage. I can picture it. If you go first, I hope you’ll be one of the first to greet me at the Pearly Gates. If I go first, I’ll be watching for you.
Louise

It’s my understanding that if they try to remove the scar tissue, they create more, and scar tissue is harder to cut than the original, so it would tend to cause a lot more scarring. Sorry to bear such news. I have my share of scar tissue, too. Hope you get better answers on other questions.
Louise

You used the pronoun “They” at at the beginning of the second sentence. Are you referring to the friends and Hans, or to the farts?

Wish I had known some the things on this thread a couple of weeks ago. I would have had a long list of questions for the oncologist’s receptionist. As it was, I only asked about 3 or 4 questions, but enough that she had to find answers to some and call me back later. I had a liver biopsy Tuesday and they said that the Dr. might have results today. I could call Friday if I had not heard from him/his office by then. Thank goodness, they called this am with GREAT news. No malignancy in the fluids withdrawn (about a teaspoon). I just had a PET scan this morning. I hope the results will be as good, but I won’t find out till next week. So, I’m still waiting, but at least I think I’m recovering from whatever infection kept me home a week.
Louise