My Husband and Cholangiocarcinoma – Part 2
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Dear Terry – Your message makes me so incredibly sad. I do not understand what it is like to lose your soulmate. But I do know what it is like to lose someone so very dear to me, since I lost my son, John. I try very hard to spend each day doing something to honor his life….to pass along the goodness that was in his heart….to remember that his biggest fear was leaving behind me and his Dad, and that we wouldn’t be able to cope. So — as my tribute to him — I cope! Some days I do it better than others, but I do cope. The first year after his loss was hard, but I was numb. This second year has seemed even harder — but I try each and every day to pull myself up by the boot straps and remember the love he brought me each and every day of his 30 years in my life. Can you try to volunteer somewhere that would help you to fill some of the void in your life right now? You sound like an incredible human being with so much to give….and I think your husband would want you to be fulfilled again. I hope you can find some peace….it takes a long time ……Hugs – Nancy
Everyone, I understand about thinking you’ve majored in medicine. My husband was sick for the last 25 years, I was caregiver. Yes, I put iv’s in, I changed bandages on his infected leg the nurses were scared to touch. This job was robbed from me on Feb. 17, 2010, I was caregiver and wife then the next moment I felt like I was nothing. Wayne had 10 litters of fluid taken off one time and 16 litters another time all out patient. Blood transfusions were on a weekly basis. I would do it all over again in a heart beat if I could bring him back, and he had no pain. This man lived with constant pain for 22 years hurt at work, ganegreen, amputation, blood clot in lung, sarcoidoisis, open heart surgery, blood clot in kidney, then to top it all off cc. He very seldom complained about hurting, he took very little pain medication. I would be glad to be able to do it again, because now I’m alone, my Mom passed away last week. I found a note I wrote to him a couple of months ago in it I state; You have gone off to see Jesus I have been left to pick up the pieces. How do I do this, after so many years of we, there is no I in we. People say they understand because they have lost someone dear, but unless it was your soulmate the person you were to grow old together you could never understand. I just hope this month passes by very fast.
Terry
Bob – your post made me laugh this morning! I’ll relay that one to Tom.
Currently he does not have enough fluid in the abdomen to drain it. They could nick the bowel if they try it when they don’t have a clear pocket to tap into. So it’ll be probably 1- 3 days yet.
His white blood count is down to 15,000 (was 30,000) so that is good! Ammonia levels are fine and the liver function is fine (two of the things I was worried about). No obstruction in his intestines or bowel.
Currently we are in a holding pattern…..so Lainy I’ve got my big girl panties on and will continue with the roller coaster…
Margaret
Margaret, let us know when you graduate from Medicine 101. After what I have been through this last week, I can so sympathize with you even more. You are getting tired and with good cause. Take some deep breaths and get that strength back that we all know you have. Good luck with it all. Come on girl, give it that old Lombardi try.
Had not heard the later about woman and healthcare, but couldn’t agree more with your statment.
I just love your sense of humor.
Best wishes,
MarionMargaret,
I’m sorry that we men are such a pain in the butt about hospitals. Afterall, men are just large boys as you probably know. Several times Donna had to literally drag me out the door to go to the ER with the comment “Well, I could let you stay home and die…” As God said in Genesis, “It is not good that man should be alone” so he created woman to keep us from avoiding healthcare alltogether. Thank you God and thank you ladies!Blessings!
bobMargaret…..Don’t worry about the negative thought comment. You and Tom have reason to complain. The parenthesis can be done on an outpatient basis.
I am crossing my finger for things to get better real soon.
Best wishes,
MarionOh boy, here we go again! These two IV antibotics that they have Tom taking are really doing a number on him. He’s gained 11 pounds in less than a week. His Doc says to go to the ER to see if they will drain the Ascites off his belly. He won’t go inpatient he just wants to close his eyes and never wake up.
I’ve got to convince him to let me take him to the ER. While he was inpatient they did see fluid in his abdomen, but they said it wasn’t enough to drain! Now of course with all the IV’s he’s been getting (between the hospital and now at home) it’s gotten worse.
Just another twist in the road on this journey with CC! Gotta take the bull by the horns and drag him out to the car I guess!
Sorry for sounding ‘negative’ here, but it just never stops!
HUGS!!!
Margaret
Margaret,
Yes, you are strong. You can do this and I know that Tom trusts you as you have been right there for him through all of this. I will be thinking of both of you and hoping everything works out and goes smoothly. Just keep “KICKIN”!
Love & Hugs,
DarlaSo here is the latest…Home Health care is coming out tonight at 6pm to show me (really? me?) how to access Tom’s port to administer 3 different antibotics that have to be done 3 times a day! One of the drugs takes 4 hours to administer. I guess he will be hooked up to an IV continously for the next two weeks.
I can’t believe that the poor man actually trusts me (really?) to be able to do this! Ok, I am WOMAN, hear me roar!!! I can so do this. And I really think that I need to change careers and become a RN! Except that at almost 59 years of age, all I really want to do is look forward to retirement!!!!
Scared? Scared as hell, but really it should be no different than three years ago when I did all of his IV antibotics through the PICC line he had in his arm! Right?
And the fun never stops!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Thanks Janet but it’s already ordered and our insurance will cover it at 100% and I imagine it will be discounted quite heavily.
Tom’s chemo has been cancelled because he does NOT HAVE TUMORS in the liver, only lesions which are caused by infections. And the MASS is GONE! Me thinks I will be having a chat with the head of the hospital and will be getting some answers…I think I will be requesting a refund for my insurance company because they made him go though un-necessary treatments for tumors. Hummm, can you tell that I’m boiling mad at this point? Maybe I should not go to the hospital today????
And I’m not kidding about the price of that pillow! It’s for him to sit on so his bedsore can heal…..unbelievable eh?
Margaret
Hi Margaret,
Great to hear that the docs have figured out what was going wrong for Tom and that they are getting his ammonia levels under control. And I hope also that they can get Tom on a new antibiotic and that he gets home with you as soon as possible.
Wow! $430 for a pillow??? That must be some kind of magic pillow! I sure hope it works!
Best wishes to you and Tom,
Gavin
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