The fun and festivities have come and gone, but with the help of my husband and the rest of my family, I have made it through another Christmas and into a brand new decade.
A lot has happened since the last time I blogged. I’ve had many tests, several treatments, and a whole lot of sleeping. I’m not even going to quantify the amount of sleeping because it’s embarrassing. My disease is stable below the neck and we’re still working to find out if my brain remains that way (another test later this month).
And I’m getting sleepy just thinking about it.
So instead of boring you with the minutiae of that, I’ve decided to share a list of things YOU SHOULD NOT be hearing from your oncology medical professionals, to hopefully improve your 2020 if you are living with MBC or love someone who has it.
- “Never trust the patient portal.”
This one takes the lead because it was the most surprising to me. A prominent neurologic oncologist said this to me when I asked about an absent test result. Normally, this kind of candor would impress me, but only if it’s followed by a suggestion to solve the problem for me (like him directing his staff to find it if he was didn’t have the time). As it was, he was off like a shot to see another patient. He’s not my doctor anymore.
- “Fill out my clipboard of paperwork.”
I have been a big fan of integrating health networks (and patient record access) with systems like Epic. But if you’re a regular reader, you know I like the concept better than the actual execution. It doesn’t matter if you were just at that doctor the prior week, or even that day for a different procedure. You HAVE to fill out at least 15 minutes of paperwork before they will see you. Plus my memory is for shit (see next item). My solution was to put all the medications with their dosage and directions in a Word document. Then I added my surgical history, which I’ve also written out way too many times. I print and sign the papers where I’m supposed to, clip everything to the clipboard, and let them do the work. So far, both hospitals and their networks have accepted my method without a problem.
- “Honestly, your memory isn’t any worse than mine.”
Actually, this one is frequent and usually issued by a friend or family member to try and commiserate, not at the hospital. A nurse or doctor will only ask you simple questions like “what year is it?” and “what’s your birthdate?” So let me elaborate, friends and family. I know you’re trying to make me feel better about losing track of my keys, sunglasses, Kleenex, the cat, my mobile phone, what I was going to order for lunch, the name of the show I binge-watched last week, and what I just walked downstairs/upstairs/outside to do. A simple “that’s ok, I’ll help you look for it” if you’re with me is more than enough.
This is one of the things I really rely on Tim for support– to ask me if I have all the necessary items I need before leaving the house and to confirm and to supplement my answers to the doctors and nurses. Otherwise I feel like 10-second Tom from 50 First Dates.
- “When will you be done with treatment?”
Well, when I’m done with life. That’s what my diagnosis translates to. Thanks for reminding me again! I’ve actually heard this from an oncology nurse at Yale while she was trying to pass the (minimal) time to access my port. And anyone in her position should be checking the basics in my medical chart (like DIAGNOSIS). If you hear this question from friends and/or family, it’s time to start educating them. And if you have things to add to this list, mention them in comments.