What NOT to Say About Metastatic Breast Cancer

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.

  1. “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.
  2. “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.
  3. “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.

  4. “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.

15 thoughts on “What NOT to Say About Metastatic Breast Cancer

  1. A nurse told me that I was fat and stubborn when I was in the hospital after having sepsis after my double mastectomy. What she said was “You’re a big person and you’re very independent,” with this sneer and tone in her voice. If I hadn’t had multiple drains in and been hooked up to an IV pole, I would have smacked her.

    Like

  2. I can agree that EPIC is flawed and Press Ganey is bullshit. We now have a different survey that asks over 20 questions even if you just came in for a massage…Like sick people have the time or energy to fill this stupid surveys out? So basically we only hear from the angry patients, since it’s one way they can be heard where SOMEONE will actually read the comments! And sadly, most of the time, their complaints are valid and the Healthcare industry in our country ties our hands in so many ways lately…. The best I try to do is be kind, listen and don’t lie. If I say I’m going to look into something and call them back, I WILL. Sad how many patients say “I can’t believe you actually called me back.” Somethings gotta change…

    YOU are cool AF and I love you.

    Liked by 1 person

  3. You’re such an eloquent writer, Paula. Thanks for being vulnerable to enlighten us even inspite of already being vulnerable. Sending you much love and a virtual hug!!!

    Liked by 1 person

  4. You should add love to your list Paula. You need all the love possible from family and friends. I must add positive attitude. You my dear one have the most positive attitude of anyone I have ever encountered with cancer or without. Together I know that this has kept you safely with us. I send all the love I have to you and I know all of us in Seattle do the same. Your Dad is sending tons of hugs and love.

    Liked by 1 person

  5. Most of these made me roll my eyes (hard and in the general direction of certain doctors and nurses), but this was also a very eye-opening and educational list. Thank you for taking us along and teaching us a thing or two. You’re always in my thoughts. Lots of Love to you Paula.

    Liked by 1 person

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