ljg
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Marc-
Hang in there with the roller coaster that is cholangiocarcinoma. I have been there (we all have) and I am sorry that this disease is occuring in your family.
Take good care of you first, and know that stinting the bile duct will provide some time. It is a good first step to allow more “normal” function of the digestive system and liver, no matter where the tumor resides. Your Mom will be weak and decisions may have to be made with her blessings, but more aggressively than the family may be comfortable with. In our case, my Mom, a true fighter, did not have much strength at that time and she was in pain, the medications for which really did change her perception of the situation. I am of similar age to you and we had to step-in in ways we were not quite ready for yet.
My suggestion to anyone in this situation is to let the patient sort their issues AFTER some intervention that allows for that time (such as bile duct stinting), but do not be patient with this disease. Get everyone, both in the family and on the medical team, to agree to work for your Mom quickly and assign a family medical advocate for the day/hours.
When you are not solving the medical issues, enjoy each day as much as possible and live in the moments with her, Marc.
Cancer or not, today is what we have, so find ways to stay present. All my best, -ljg
I want to tell you how happy I am to hear that you, Darla, are processing your husband’s death and are able to be constructive here. In fact, my father died suddenly in August 2007 of a non-related issue, and the stress and reaction that my Mother dealt with was all-consuming. She grieved and stayed in that mode, transfixed in a way that was possibly unhealthy for her.
Other circumstances added to the situation, and in retrospect I feel like the cholangiocarcinoma was given fuel. Stress is extremely difficult on the body. In turn, and given both deaths being so close together, I struggle with the stages of grief for them both. It is an amazingly difficult time for what is left of my family. Both my parents were merely 61 and I actually worried about them aging (well beyond their 60s).
I am trying very hard not to stay in fight or flight in my own reaction to my Mother’s death, and to process these emotions and not turn it all inward, letting the stress of the situation impact my health.
At 61, my mother had just weeks to comprehend that her disease was extremely advanced and that she would loose her battle. Later, it seemed a relief for her to let go and leave this complicated world. I ultimately respect that, but promised not let her sudden death destroy me, to remain positive in the face of adversity, and to focus on my own health and balance my life… to go on living with her in mind. Losing parents has an amazing impact on a child. Losing both in less than a year informs you that you must live fully every day.
We are survivors, here, joined by a common disease. Our new goal should be to care for ourselves well and to appreciate that we are alive today.
Hugs to you all. -ljg
Hello Robyn.
This year, and at 38, I was thrust into the caregiver role with my Mom and cholangiocarcinoma. Simply put, you need to know that you are not alone. There are so many things to do in care taking, please remember yourself in the mix of it all. Sometimes it feels good to do things, and research options, and when it does, well do that.
When you have downtime (seconds and minutes, mostly), remember to do some small act of self-care to bolster yourself. Your Mom deserves anything you can come up with, but, she most importantly would want you to take care of yourself first. It was a difficult lesson for me: Put your air mask on first, then help your Mom like the fabulous daughter I can already tell you are.
Please know that we are with you, always.
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To all those that helped me through my difficult times;
Family has a new definition for me.
