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Hi Bruce,
Sorry you have to be here, but it is a great place for info. My dad was 87 when diagnosed. He never had stent or duct issues so my question would be how much of a procedure is a stent change? My father had what was a minor surgery for a biopsy (laparoscopic entry) and he had a very hard time getting over it. It was supposed to be out patient and he had to spend the night and was sent home with a urinary catheter. Our bodies don’t bounce back at 80 like they do at 20 or even 40 or 50. He didn’t want treatment either and in hindsight, I wished I had not encouraged him to do the biopsy as the results did not really matter to him. I understand your situation is different.
Is there any drawback to waiting until the stent she has isn’t functioning as it should? It may be that her health and outlook at that time would help to determine a course of action.
I sympathize with your situation. It is very hard to accept that your parent does not want treatment. It is the first step in acknowledging the inevitable. I think that may have been the hardest time for me. Above all, respect your mother’s wishes, it will be what gets your through some of the times to come.Take care,
Jan
Heather,
I am so sorry for your loss. Forty two is too young. I will keep your family in my thoughts.
Jan
Another Fern? I thought my mother was the only one (it’s her middle name)
Sorry to hear about your mother. You’ve come to the right place.
When it is quick (and it was for my Dad) it can be a bit of a shock even though you knew the inevitable. In my opinion, quick is good. No good comes from lingering. I will keep you and your family in my thoughts.
I lost my Dad last September. From what I have read on the board, the experience can vary widely. Other than weight loss, my dad was symptom free until about 4-6 months from the end. He had dementia about the last 3 or so months. He just progressively went down hill. He became more dependent on a walker and got weaker until he was in a wheel chair for the last week. His last three days were spent sleeping (probably more of a coma as he never woke up). We had several battles with constipation and bowel impaction.
Hospice can fill you in on the what to look for near the very end, when she has, as Hospice calls it, transitioned. Bur feel free to ask anything you would like to know.
Mathilda,
I am not aware of your location, but is there a hospice type organization you can contact to help with your dad?
Your father should be checked for bowel impaction. Continuing to give him laxatives that aren’t working should not be acceptable. We went through the same ordeal.
Jan
Hi Tess,
We were on vacation this week or I would have responded in a more timely fashion.
I was stunned when I saw your post that a year has passed so quickly. It was 6 months for us on Tuesday.
I am sure your Dad was pleased to see you all together and I am glad to hear Little Jack has taken over the head of the table!
Fondly,
Jan
Hi Jeff,
Sorry you had to find this site. There is lots of good info here and good folks to answer questions.
Two things I found worthwhile, though my father was not a candidate:
-sirspheres
-Percutaneous Hepatic Perfusion (PHP) at the
National Institutes of Health
Erin Kelly
Office: 301-451-6940
Email: kellye2@mail.nih.gov
Melissa Walker:
301.402.9537
Walkerme@mail.nih.govYou may also want to check the FDA site for other trials, younger and stronger people are typically more apt to be considered.
Good luck,
Jan
Debby,
I read Pam’s response and thought, hey, that’s me exactly. But I would like to add something to it.
My father passed away last September. He began appearing in my dreams for the first time since then just 3 days ago. l have been struggling more as of late than any other time and I believe he knows that.
In the first dream, we were together on a vacation, having fun doing something we both enjoy. In the next, he was sick, very much like he was last summer, failing physically and suffering from dementia. Last night’s dream is not as clear, but he was himself and not sick.
Maybe it is my subconscious telling me what I already know, but I like to believe it is him reminding me that he had to go, that it was his time and that I should remember the good not the bad.
I (and many others here) completely understand the awfulness those last days can bring and the relief that will come. I spoke with one of my best friends who lost her father suddenly when we were in high school nearly 30 years ago. Obviously, there are pros and cons. I got to say goodbye *and everything else I wanted) but the price was having him linger longer than he or I wanted.
I am so sorry for where you are right now. But there will be better days.
Jan
Welcome Chuck!
Good luck with your colon surgery. After the liver resection, the colon should be a piece of cake. Keep us posted on your progress.
Jan
Lu2 wrote:we were sent to the wrong surgeon, specialized in pacreatic cancer and lower liver.new GI guy does not perform major invasive surgeries but endoscopic procedures. He will do the endoscopic ultrasound in 3 weeks why Jen04 is not happy. He will refer us if dad is a surgical candidate.
We were originally told based on tumor band location he was most likely not a candidate for surgery.
Or, if this is as close as we get to a diagnosis, we should proceed with the oncologist? We have one of the best in the State lined up?! We have no treatment plan and time seems to be our biggest enemy right now!
You have been dealing with a lot! In order of the paragraphs above;
Big red flag to me that you were sent to the wrong surgeon
New GI guy sounds like he is wasting your time. One, he can’t perform the surgery your dad may need and two, you’re waiting 3 weeks.
It may be that location prohibits surgery, but you are wasting valuable time. Many treatments are subject to the patients bilirubin level and they can increase rapidly. you don’t need to panic, but you don’t have time to dally either.
Definitely proceed with the oncologist. He should be able to connect you with surgeons or interventional radiologists as necessary. You will know once you get the right doctor, at least for us, appts and tests, etc. proceeded quickly then.
Please feel free to send me an email if you like. I am on the east coast, so I am no help with doctors in you area, but Lord knows I had my frustrations with an inept oncologist.
Is it an issue of distinguishing between cholangiocarcinoma and hepatocellular? If so, in my father’s case, they never made a determination even with a laprascopic biopsy. Otherwise, my .02 is to find another doctor; in my opinion those are early warning signs of either a poorly run practice or inexperience.
Some of this should have come with explanation, like why isn’t he a candidate for surgery? Is it tumor size or tumor location?
