My Husband and Cholangiocarcinoma - Part 2 (Page 3 of 15)

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

Margaret,try ebay for the roho cushion,it will save quite a bit         Janet

So 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

Oh 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,
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!
bob

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.

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

Oh Terry,

You are so right.  It does leave a terrible void, doesn't it?  Since Jim passed away only 7 weeks from when it all started and was relatively healthy until then,  I was only the caretaker for those 2 months and think I now know more about this disease than most doctors, but you are so busy taking care of everything and then just like that it is over.  As you know, my situation is much the same as yours.   I try to keep on going and doing what I think he would want me to do and I like the thought that coping is a tribute to him.  Thanks for that thought Nancy.  Yes, I too believe it takes a long time and never really goes away.  I think we just learn better how to cope with things and keep on going. 

Everyone take care.

Love & Hugs,
Darla

I found a very unique volunteer job for someone who loves others...a volunteer "rocker/walker" at the pediatric ward of our hospital.  I was admiring a tiny bundle of love and expressed my thoughts to the gentleman giving the bundle  a walk.  He shocked me when he replied it was just his night to be a rocker/walker to babies who have no one.  He went on to explain that often parents are working or perhaps ill also and the tiny ones need human contact and then he grinned and said he loved it!  The little bundle squirmed and he said try it sometime.

Perhaps you could do something for a child that would give you something to hold, comfort, and care for for a few minutes.  It would be a way to help without replacing your Wayne and could give you comfort.

I have thought of this often, I plan to do something after I am relieved of my caregiver job because I can't stand the thought of 24 hours of missing my loved one.  There has to be someone I can hold and cuddle and they would be providing me a much needed warmth with my replacing part of my "empty hours" with someone who needed me.

Dearest Terry, I now can so profoundly relate to what you are going through. I lost Teddy 5 nights ago. The first step of moving him from home to Hospice was so hard, I mean hard. I had to let go of someone I loved more than life and let others take over. To my dismay and regret they did not do their job and I watched him suffer needlessly. But with that said, I have to try and push those thoughts back as I have tried so valiantly to make this last 6 months our precious time. I did not want to look back and see only a bad monster, I wanted to make new memories that would carry me forward. I know that when I can get last weekend pushed back the wonderful memories we have made will come forward and I will be strong and  be happy as that is what Teddy would want. His last words to me were "I love you, BE STRONG" and that is now my mission.  I hope you find some peace soon. You are really not alone. We all care.

Hi Margaret,
So happy to hear that Tom is feeling better! Hopefully those infections will become a thing of the past.
Hang on to that fighting spirit, and keep on kickin!

Janet