Palliative Care: The Big Picture
Today we had another palliative care appointment.
We’ve had one almost every 3-4 weeks since July when we started Soraya on an opioid pain patch. Making sure her pain is controlled is the top priority during these appointments, and we also talk about her quality of life.
During her last appointment, Soraya told the doctor she’d been having an increased amount of pain. This was a big step for a few reasons – the first being that she hasn’t always been able to express her pain, and the second being that she had a playdate over and felt comfortable speaking up in front of them!
Safi (who was the one at that appointment) said:
“It was surreal having Soraya talk to her friend and a palliative care physician in the same room, as that’s what she wanted to do. I love how we are somehow able to juggle hospice virtual appointments with talk about foundation and mascara and the mean girls at school.”
The doctor had told Safi that he thought Soraya may be getting better at articulating her pain as she gets older, which lets us see the gaps in her care more clearly. However, today’s appointment really did validate that her pain is there. She’s able to verbalize it and it likely is getting worse.
So today we took a step back and looked at the big picture. I asked the hard questions: Where are we now? Where are we going and are we headed somewhere bad fast?
What we gathered is that things are getting worse, but they aren’t imminent.
In the meantime, we must continue following Soraya’s symptoms and prioritizing her quality of life and what is important in life. He says when things become more rapid, he will let us know, but also ultimately, we will know. 💔
This is so tough to hear, yet we appreciate his honesty. Safi put it perfectly when he said:
“I really thank him for his transparency because the value of time and the feeling of regret are two very powerful factors in my decision-making. I never want to regret anything, and I certainly want to make sure we make the most of every moment we have with her. I am truly thankful for his support. Even though I think of him as the angel of death, he has done nothing but increase her quality of life.”