Yes, breathing a little easier that I can get my scan tomorrow but also incensed that no one thought to send me a quick portal message so that I didn’t have a minor heart attack today. I now do know yet another place in my portal to check but even that info wasn’t completely accurate. Too much burden is placed on patients to navigate this process and minor adjustments could mean the world.
I do understand that everyone has a job to do and there are only so many hours in the day but I also think that systems don’t do a good job of caring for humans. We need the humans in the system to recognize this and meet patients where we are. It is terrifying to wait to find out if we’re ok, if the medication is working, if we have progression, if death is one step closer. Holding it together and behaving normally is a Herculean effort.
Just a little empathy and understanding goes a long way. And now I’ll get back to getting my infusion, which will make me exhausted and somewhat miserable for the next few days — it’s also not an easy thing to keep showing up to get medication that has that result. Just showing up takes a lot of effort and struggle that no one sees or truly appreciated in my opinion. We want to stay alive so we have to, but that doesn’t make it easy. My PSA for today.”