What's the End-of-Life Like?
Last updated: February 2022
I have two controversial thoughts that are bothering me. One is I want to know what the end-of-life is like. I'm almost obsessed with it. Another one, which is equally strong and stubborn, I'm staying away from because I was not sure I was ready to address it yet. I was like a pendulum swinging between the two sides.
My first experience with the end-of-life
My first experience with the end-of-life was the first two weeks when I was diagnosed with lung cancer in the hospital. After two nights in the emergency room, I was wheeled to the room for the observation. I went through the internet like a mad person over the night about everything related to lung cancer and brain tumor. One thing that caught my attention was about the end-of-life. There were several pictorial descriptions, and it was scary and mysterious. Immediately, I turned off the cell phone, and for three years, I never went back to check again. However, it carved in my mind: what is the end-of-life like?
Reinvestigate the end-of-life after my advocacy
After I started to advocate for (lung) cancer, I got familiar with hospice and palliate care, and inevitably, began to look at end-of-life care again. However, I focused on observing cancer patients and their caregivers who posted the sad news instead of online searching.
I was very mindful of the cancer patients' descriptions of the symptoms and the pictures at the end of life, no matter how trivial it was. For example, some patients lost weight dramatically, but some didn't; some friends conveyed the final-stage symptoms; others talked or wrote not very cohesive. Some of these patients were extremely honest, mildly blaming the clinical trials that failed them, and some were very blunt that some friends left them. For those patients who posted their pictures, almost no exceptions, the patients are smiling and hugging their children or pets as if they didn't know they were at the end of the journey. Then, several days later, either their caregivers or trusted friends posted on Facebook the sad news.
Two or three days before Christmas, I saw a friend's post informing us that all the treatments had stopped working, and now she is on hospice. She described her situation, a sequence of expected events until her death and her family's arrangement. Yet, at the end of the post, she told us she was at peace, and she still encouraged us to support each other, provide education and raise funding.
Recently, I noticed that some patients couldn't communicate on Facebook anymore, but their caregivers started to post on their behalf. These postings are extremely painful and devastated. It's like a day-and-night difference compared with the patients at the final stage.
Finding peace and comfort
Last week, I noticed a picture posted on Facebook that the 8-year-old child was lying in a coffin and a lady (maybe her mother) was bending over and kissing the girl's forehead. I stared at the girl's rosy and puffy face (maybe because of the steroid) and seemed comfortable coffin. Somehow, I didn't feel horrible, and on the contrary, I strongly felt peaceful.
For some reason, I think that's the feeling I have been looking for.
My reflections on end-of-life experiences
What surprised me was the peacefulness of the dying cancer patients. This is compared to "unsettledness" or "desperateness" from their caregivers. I thought it was the opposite. Personally, it's not too surprising because I handle cancer and death more calmly than my husband and my parents. I'm more prepared to face my mortality.
Looking back on my journey of understanding the end-of-life, I wish there was more information directly reflecting the end-of-life experience of patients and caregivers. However, I can't help asking myself: Do I have the gut to write down my experience before my end-of-life?
Happy Lung Cancer Awareness Month! What does self-advocacy mean to you?