My Husband and Cholangiocarcinoma – Part 2
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You are a very strong couple! I had never even heard of this cancer. Pretty nieve. My husband just died from it 2 weeks ago. Went to the hospital March 14th with a stomach ache and shortness of breath. Only to discover this nasty disease. He was bleeding into his stomach. There was nothing left to do but make him comfortable and be there for him. He passed on the 20th. I am baffled as to how he showed no symptoms or if he did the incredible amount of strength he had to not show it. Best of wishes and LOTAS of prayers for you and your huband. So glad I found this site!
Hi Margaret,
That is great that Tom’s tube exchange went smoothly and also that he put on 7 pounds, excellent news all round!
Best wishes to you and Tom,
Gavin
Margaret….Tom is encountering the speediest tube exchange yet. He so much deserves a competent and efficient operator. And, he gained some of his weight back….that is fantastic.
May it continue.
All my best wishes,
MarionAnother good news day, Margret. That makes me so happy. I think anyone who is sick would be very lucky indeed to have you as their care taker!
Tom has another successful external biliary drain tube exchange. I keep insisting that we should be getting frequent flier miles at that hospital. It’s pretty scary that when we walk in everyone greets us by name. If I don’t go with Tom (someone else took him today) they all tell Tom to say hello to me!
His Interventional Radiologist can now do his tube exchanges in less than 10 minutes. He was joking today and said “Let’s see if we can get this down to less than 4 minutes”! He does spend time before Tom gets into the operating room and he modifies the tube (adding extra drain holes)
We’ll be back there in 4 weeks for another one. Since we have now gotten onto the ‘4’ week exchange program Tom has not had ANY infections in his liver. That is great so for now we’ll keep getting those exchanges every 4 weeks.
Oh yea, Tom has GAINED 7 pounds!!!!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
So now for the GOOD NEWS! Tom has a CTScan on Wednesday Morning and we met with his Onc today.
Very little tumor activity! The main tumor has decreased in size (although it’s still blocking the bile duct) and there are two other spots (lesions) that have gotten a tiny bit larger but mostly the edges appear to ‘thicken…’ which could just be scarring. Since he has NOT had chemo in over three months, his onc is VERY pleased with all his numbers, and he is gaining weight! He is offically 118 lbs. His Alk Phosphate is holding steady at about the 900 range. Which appears to be his ‘new’ normal for him! No mets (AWESOME) to anywhere in his body. We follow up with his Onc in 8 weeks unless something happens between now and then. Keep those prayers coming, it’s working. Tom is gradually coming to terms with his NEW NORMAL life….
I am a big fan of letter writing. My M.O. is that I write a letter, save it, re-read it one weeks later, then finalize it. I tend to get my anger out in the first “draft”…..then try to remove that anger so I don’t come across as a “complainer.” The final round gets my facts across in a more sensitive and calm manner, which is sometimes more effective. – Nancy
Dear Julieanne, I would go after them! My husband, Teddy, was in his last 4 days of life and I transferred him from home Hospice to In Hospice. Biggest mistake I ever made. Long story short, I had his pain under control, they did not give him his Morphine and it was a tragic and horrific end. I made a video on UTube at the request of a lawyer/advocate. 2 of the 3 Nurses were fired and now because my daughter and I cannot get those days to go away we are looking at things we can do as it comes under Nursing Home Neglect. I asked for his files and was more upset when I saw them. Hospice on the whole is good but this should have never happened. We feel we need to step forward so these things do not happen to others. We are also hoping for closure so that we can remember the wonderful times and not the very end. Letter writing can be so cathartic! Hope things are moving along otherwise for you both.
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