My Husband and Cholangiocarcinoma
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All:
At noon today I insisted that Tom go to the ER. After 4 hours in the ER, they admitted him. His white blood count was 22,000 so he does have an infection, somewhere….They are doing cultures of his urine, blood and bile from his tube. If it is an infection in the liver, they will be calling in the infectious disease team. They did two Bolus iv’s in the ER and now have him on Flagyl and Cipro antibotics. I would image that he will be in the hospital for the next 2 or 3 days, but he is in the best place for now.
Thanks for your continued support.
Love and cyber hugs!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret and Tom
Margaret,
Perhaps you should get Tom to a doctor with these new symptoms. Perhpas he could have an infection?As to Hospice, I dont know a thing though my psychologist and I did discuss it this week. Again, I dont know how it is down in the US, but in Sweden, you just call the doctor and they refer you like Gavin said they do in Britain.
Hang in there. Hopefully this is just a bump in the road. If not, you have us all here.
Kris
Margaret, I wonder if Tom could have developed some kind of infection? That can sure make you feel really awful, really fast. A bili of 11 sounds very high for someone with a drain. I hope his doc will see him pronto, to figure out what has changed and how to help him. Please keep us posted– we’re all praying for both of you.
Love and hugs,
Kristin
Thanks Gavin and Marion….I’ll be calling his doc today to get him in there to be seen. He has been jaundiced for the past three weeks (because his bile drain was blocked) His bili level was 11.1 and I think his color is about the same, his belly seems maybe more yellow, but his eyes are less yellow if that makes any sense.
Thank you for your continued support!
MargaretMargaret….Tom may also be very much worn out from the trip. It may have really zapped his strengths. First and foremost hospice provides comfort care to patients and their families and quickly we learn to appreciate their support in the time of special need. As Gavin has mentioned, you might want to contact his physician and request a visit.
My heart is with you,
Best wishes,
MarionHi Margaret,
I am very sorry to hear this news about Tom and what the both of you are going through right now. As to hospice care, I am sure that it works differently in the US than it does here so hopefully someone else will be along soon that can help more with this. But I would imagine that a referal may be needed by a doctor, so maybe you could phone Tom’s primary care doctor and they could advise what is needed. I can’t say if it is time for hospice or not, but what I do know from my dads experiences with hospice is that the care he recived was outstanding and nothing was too much trouble at all.
Even if it is not time to call in hospice, perhaps it would be worthwhile having the doctor take a look at Tom to see what is causing the issues that you mention? Is Tom showing any signs of jaundice right now and does he have any issues with pain?
I wish that there was something more that I could say that would help Margaret, but please know that we are all here for you and I will keep you and Tom in my close thoughts.
My best wishes to you both,
Gavin
Not certain what is going on with Tom these past two days. He is getting very tired and isvery unsteady on his feet. His blood sugars are fine, no temp, the bile bag is still outputting the same amount of bile. Wondering if the vacation was the last big hurrah?
He lost control of his bladder at 3 am and was so weak he could not get himself cleaned up, so there I was at 3 am helping him and getting the bed stripped and cleaned. (gonna be a long day at work tomorrow cause now I’m up and can’t go back to sleep) Now he said that maybe it’s time to bring in Hospice. Does one go downhill so quickly with CC?
Of course, I do not know much about Hospice, so I’m relying on all my friends on this forum to help me out here. Do I call his oncologist or his Primary Care Doctor regarding this? I imagine that he has to have a doctors order for hospice? How does one know when it’s time? Is this just another twist in the road?
So many fears, so many questions, so little time, how does one prepare for this?
I want so badly for this to all be a dream and I want to wake up now.
Margaret
Dear Margaret,
I am so glad you both enjoyed your trip to Florida an you escaped the hurricanes.
8Ibs Wow, that is brilliant weight gain, and as you say worth the trip itself.
We are going to Florida next year, mainly for the theme parks though (my 9 year old is so excited!) and Bubba Gumps is on our list to visit after we have been to Universal. My son is desperate for a Run Forest Run sign for his bedroom lol!
Keep Kickin that Cancer!
Much love
Andrea
That a way Margaret and Tom! There’s something this ugly disease can’t take from you – sweet and precious memories. I think the best use of our resources is investing in such.
Grace and Peace,
bobI am SO glad you did this and enjoyed yourselves so much! Looking back on moments like these will help both of you get through hard times. You can just close your eyes for a minute and “go there”– remembering the feeling of your feet in the water, the sound of the waves, the smell of sand, the taste of those awesome Greek pastries… Your body doesn’t know the difference between an actual event and the vivid memory of it, so doing that can really make your stress level go down.
Love to both of you,
Kristin
Margaret it all sounds just wonderful and no RX in the world can compare. We are so happy that you had such a wonderful time and that there were no disasters of any kind.
All:
Our trip to Flordia was AWESOME. Only a few rain showers, and no Hurricanes!
Most of the time we were there it was sunny and warm. We saw a lot of sights!
We walked in the ocean, collected shells, watched the sunset over the ocean. Tom gained 8 pounds while we were there! This in itself was worth the trip.
We went to Bubba Gumps and had Crab Legs, and to Joe’s Crab Shack and had Crab Legs. Tom was ‘under the weather’ for only about 1/2 day while we were there, so I put him to bed and he slept. We went to the sponge docks and got a neat sponge and some air plants. Went to the Greek Bakery and had an awesome sugar high with the pasteries we ate.
All in all it was VERY GOOD THERAPY for Tom.
Love to all,
Margaret and TomHi Margaret,
Hope you and Tom have a great trip and that the hurricane doesn’t come anywhere near you both!
Best wishes to you both,
Gavin
Wishing you and Tom a most wonderful and safe trip. Does Florida know that 2 of the biggest CC kickers are coming down and they will just kick those hurricanes back to sea. Enjoy!
All:
Only one more day of work and on Friday, Tom and I fly out to Flordia for a much needed vacation!It will be great to see Tom’s niece again as it’s been a year since we saw her last. Hopefully the hurricane’s (there are three approaching the coast) will all veer back out into the ocean! With my luck, that won’t be a case. Hummm, husband gets rare cancer, has successful liver resection, gets a re-occurance (1% of successful resection patients do) so why not experience a hurricane on the first time I ever go to Flordia? Like I said that will be my luck!
Hope everyone continues to do well in the fight with CC and I will check back on everyone when we return on the 9th!
Go with God and KEEP KICKIN’ THAT cancer (now beginning the 10 month of life after Tom’s 6 month terminal diagnosis)
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