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  • #99472
    bglass
    Moderator

    Hi Findacure,

    Thank you for posting this beautiful expression of what it means to be a caregiver.

    Our readers, myself included, find inspiration in the strength, courage and love caregivers bring day after day in support of patients.  This cancer can be a roller coaster of good days and bad ones, and our caregivers help patients get through the tough times.

    I hope doctors can get your husband’s bilirubin under control and that he feels better soon.  Take care and wishing you a joyful holiday with family and friends.

    Take care, regards, Mary

    #99466
    Findacure
    Participant

    It’s a surreal thing, listening to your husband get the bad news that his cholangiocarcinoma has returned.

    The heavy weight of sadness you feel when after 3 hours of trying to get stents placed due to the tumor blocking the bile ducts was not a success.  We prayed that the small 5fr stent works on the one side they got in… However, it doesn’t.

    Confirmation once again that surgery is not an option.

    So you make a plan.  Another ERCP on Monday for stenting; hoping it is a success with a bypass stent.  If not, it’ll be a drainage catheter done by Interventional Radiology and he’ll have a bag.

    Oncology appointment is made.  By that time, we all pray he feels better.  His bilirubin is off the charts.  He’s so difficult to look at with that deep, bright glow of yellow.  Not to mention how crappy he feels.  Thursday his bili was over 10.

    You talk about lots of things… Places you want to go together, reviewing finances & wills to be sure everything is organized and in place.  Then you talk some more, and laugh in between the tears.  You have to laugh; it’s too much of a nightmare as is.  Christmas doesn’t mean gifts or presents this year, all we wish is to spend time together, with family, eat & laugh.  We are grasping the reality of this cancer bit by bit.

    Look, this does not mean we are giving up or are giving up hope.  He has the fight and so do I.  His medical team is amazing and we have complete confidence in them at Brigham’s in Boston.  Michael is keeping his eye on the next step, shrinking this damn tumor down and keeping the cancer away from his lymph nodes.   We are full of hope and determination.  He is my hero.

    This is just how I am feeling right now, being a wife of a 54 yo man who means the world to me.  This can be a very lonely journey for caregivers.  We try to remain strong to our family; being a nurse I try to answer (to the best of my ability) all their questions.  Then I cry once I am alone, only because every time I have to explain things to friends/family, it brings the reality home, again.

    Well, this post is a lot longer than I anticipated.  Keep up the fight, hug your loved ones a little longer.  Christine

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