Re: Hello from Houston, first post, sister with Cholangio
This discussion among mostly caregivers raises the following thought for me.
I guess each family dynamic is different. My doctors have outlined treatment options, and I enjoy tremendous support and counsel from family members and friends. So far, however, my treatment decisions have been 100% taken by me. But there is always the possibility that I will need to rely more on others to take a more direct role in making treatment decisions for me in the future. I don't look forward to that scenario.
One of the horrible aspects of cancer is it makes you feel a loss of control over your life. Speaking as a patient, I would find it important that family members and caregivers not inadvertently manage things in a way that would make me feel like I have little say. I know this is hard if a patient is very ill, but preserving some sense of control would be valuable to my own well-being should that day come.
Caregivers are heroes and make all the difference to patients, but at the same time as a patient it can be hard to speak up when you don't feel well and life is spinning out of control. That was behind my earlier point about listening hard to patients for spoken and unspoken signals on treatment preferences.