Cholangiocarcinoma Cancer Survivors

He opened his eyes and said “Baby, why are you screaming? You are scaring me.” I looked down, and said to him ” You are on the floor, I thought you were dead.”

The last couple of weeks it got harder and harder for Mike to walk. It got to the point that he only left the hospital bed to go into the bathroom. We started having him sit on the walker, and I would push him into the bathroom. I would stand outside the door a wreck worried he would fall, and begging him to let me come in but he couldn’t go with anyone else in there so outside the door I would stand.

This particular day, I pushed him into the bathroom, and on the way there he passed out, and slid down the walker and onto the floor. I thought he was dead, and started screaming. He woke up scared, to me screaming, with no idea how he had gotten to the floor. The immediate concern was how to get him up off the floor and onto the toilet. I literally lifted him off the floor myself, and put him onto the toilet seat. We continued on.

Later that day, he passed out again with his uncle helping him, and I realized we had to figure out a new plan. I called the hospice place, and talked to them and they came out and put in a catheter, and Mike never left the hospital bed again alive.

We surmised that the tumor was pressing on a main artery, and in certain positions it was causing him to lose consciousness.

This is the reality of stage 4 cancer. No pink ribbons, no cheerleading. The reality is that it took a healthy, virile man and stripped him of his health, dignity, and finally his life.

I hesitate, as do most caregivers, to balance our privacy with sharing the actual harsh realities of this horrible disease. However, moving forward with my life encompasses more than just grieving his loss, although that is awful enough. It also encompasses dealing with the horror and trauma of watching my friend, companion, and lover slowly disappear right before my eyes. All the while, being careful not to share my own fear, sadness, and horror with him.

The survivors of this cancer are not the patients. There are no real survivors of cholangiocarcinoma, the 5 year survival rate is almost unmeasurable. I know that if you found this blog through a google search, this is not something you want to hear. I am sorry that I can’t be more positive. I am sorry that I can only offer you hope on making the best of the time you have left. There isn’t enough research being done on this horrific disease, not enough money being spent on finding a cure, I could go on and on…

The survivors are the son who will never see his dad ever again. The brother and sisters who miss Mother Mike. The friends who look over at his tool box, and think of all of the years he spent on the job he loved. The step daughter who has had to live with a mom struggling some days to just get through the day.

We are the survivors.

Anne

5 Comments

  1. Thank you for your continued blogging. I am walking with my husband in this very same journey.

    • hi Ginna, I am so sorry you are dealing with this hideous disease. feel free to friend me on fb anne moore sabatos

  2. Thank you for giving me some insight intothis terrible disease. My wife was diagnosed with cholangiocarcinoma in September of 2017. After partially successful embolization and surgery, she began chemo on my birthday January 19, 2018. we are simply taking a day at a time and making the best of each moment.

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