My Husband and Cholangiocarcinoma – Part 2
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OMGOSH Margaret! Wish I lived closer so I could help. What a fine how do you do. From now on when you are doing your kickin, you better be standing somewhere safe. Good luck on it, girl. Oh, wait, now I get it, you were cheering for the “Pack”.
Oh Margaret – What a challenge. We’ll pray for the best result for you and your arm so you can take care of your hubby. Is there someone else who can come help you with him if your arm is broken? Hang in there. I think home health can come in and do for Tom what you can’t (if you can’t). Best wishes coming your way. Blessings, Susan
Tom goes in for a tube exchange tomorrow…….and I fell today and broke my right wrist today. I have to go to an orthopedic surgeon to see if they have to ‘pin’ it or just put a ‘real’ cast on it. Humm, this will be a challenge to flush his tube and change his bandgage daily
Go with God & KEEP KICKIN’ THAT cancer!
MargaretMargaret,
I know how these recurrent infection bouts can take the wind out of the sails. Let’s expect that changing out the tube more frequently will end the cycle.Grace and Peace to you both,
bobHi Margaret,
Great to hear that Tom is feeling better right now and as you said, lets hope that they got this sorted this time.
Best wishes to you and Tom,
Gavin
Margaret,
Glad to hear Tom is feeling much better and that you now have things back under control.
Love & Hugs,
DarlaHi 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
All:
Tom finished two of his antibotics yesterday (YIPEE) and will be on the third one until the 23rd of December. Wow, I won’t know what to do with myself!!! Only one 2x a day, EASY BUTTON!!!!
He is looking and feeling MUCH better! One has to wonder just how long these infections were running rampant in his liver. Long enough to make the man feel that he was on the edge of the beyond. Hopefully they got it right this time. He is currently at the doctor’s office so I’ll know more once our son in law brings him back home…
And after a very nasty phone call to his PCP’s office they now have him set up for a once a month tube exchange!!! That should also help with recurrent infections.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
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.
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.
Terry:
I, for one, would not ever ‘think I’ve majored in medicine’, nor do I think that others on this forum think that way.
When we post on this site we do it not only to get rid of our frustrations, but to possibly help others in their journey and to get the support that so many caregivers need to go through the day to day things such as changing bandages, flushing ports or picc lines, administering antibotics, being an advocate for the patient, encouraging our loved ones to eat, drink fluids, take them to/from their never ending appointments with doctors, oncologists, interventional radiologists for chemo, ctscans, emergency rooms, etc….
I also would not trade one day of Tom’s illness because “For Better or Worse, in sickness and health” means a lot to both of us. I know that he would have been there for me if it were he that was the caregiver.
Why do I do it? I do it out of love. Do I get frustrated? Yes. Do I get emotional? Yes. Anyone would, even you have to have experienced those feelings while you were caring for Wayne.
Perhaps you could benefit from counseling to help you through what I can only imagine has to be very long empty days without your soulmate, along with your grief and sadness. That has to be overwhelming for you. You are correct, there is no “I” in ‘We’. That has to be hard, to loose your soulmate after being his caregiver for such a long time.
And I know that one day I will be in the same position as you, Darla, Lainy and so many others on this forum who were the caretakers for their loved one. You are not alone here, none of us are alone in this journey. And that is why so many of us have joined this site, for the caring, compassion and love of others who are experiencing the same journey that so many have undertaken, and that so many have ‘lost’.
My heart goes out to each and every one of ‘us’ who have lost a loved one to CC, or to any other disease.
My thoughts and prayers are with you.
Hugs,
MargaretOh 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
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