Making Yourself Heard

Listening is so important especially when blood cancer is involved.

I’ve had a few dicey incidents lately where someone not listening put me in a precarious medical position.

I’m not happy about it.

Nonetheless, if I have a message to people with leukemia and other blood cancers it is this: Make yourself heard.

Please listen to me

I feel like a broken record talking about how my former primary doctor would not listen to my health concerns. It was only 1½ years into my complaint when a different doctor, by chance, caught a glimpse of my blood work from nine months before. He ended up stepping in to get me to a hematologist ASAP.

Needless to say, with white blood cells and platelets out of control, it eventually led to my diagnosis of chronic myeloid leukemia (CML).

My then-primary doctor shut her ears to hearing about the fatigue and pain I was feeling. She more or less rolled her eyes when I showed up for physicals and told her something was “off” and wrong with me. I was clearly annoying her when I tried to speak about how I was feeling. Usually my response, after a few minutes of her not listening, was to just shut down and not say anything.

My goal was to get out of her office and away from her disbelieving and condescending attitude.

Luckily, I am at a different place now geographically and with my health care providers.

When it's not your regular team

However, whether it is COVID or some other reason, lately I’ve been seen not by my regular medical “team,” but what I will politely refer to as “randos.”

That's random nurse practitioners or physicians who are on duty and filling in. Mad respect for health care workers, but hear me out.

I have nothing personal against these people, but I do have a huge problem when they put me in a bind by not listening.

Too busy to listen

The first nurse practitioner, who was filling in, would ask me about a problem and I would answer. She would then say the opposite and ask me if she was correct while recording it on the computer. It was like a game of telephone where the message didn't compute--not even once.

Next, she started chattering about setting up an appointment with a specialist that may or may not have been necessary. It would all depend on test results that weren't back yet. She was adamant about setting it up anyway.

Fine, I told her. But I could not do it that week because I had work and other appointments every day. It would need to be after that and located in the same facility.

She was not listening when I was speaking. She was fiddling with the computer and not paying attention. The result? The appointment was scheduled for that week and at a different facility 45 minutes away.

When you're the last appointment for the day

More seriously, this past weekend I sat in an urgent care setting for nearly two hours before seeing the doctor on duty. Many people told me that I was her final patient of the day at noon. I could hear chatter outside of the door that yes, at last, this person, Susan, would be `it' for the day.

The doctor, head down, rushed into the room, not introducing herself. She took a look at the suspected cellulitis in my feet and without looking at my chart or knowing anything about me declared she would prescribe x antibiotic.

I have important things to tell

I am allergic to 11 things, many of them antibiotics. I also take a tyrosine kinase inhibitor. There are many interactions. I have leukemia, hello, and a host of other serious medical problems.

She started telling me with a push of the button she was sending the order over to the pharmacy and it was now three minutes past noon, I kid you not, and she was bustling toward the door.

Speaking over me

I tried to speak and she talked over me. Finally, I said, “Please…Please could you listen to me for one minute?” I told her I was susceptible to a lot of drug allergies and I usually used x antibiotic for cellulitis.

Further, I told her that there were a lot of interactions between drugs and my TKI. I needed to know if x made the cut. That would require her to call up my chart.

Nope.

Her answer, on her way out the door, was to call my doctor Monday and/or ask the pharmacist if what she prescribed was okay for me to take.

Nothing on the chart

When I got home, I read the report she wrote about the visit. What stood out to me was the section where my medications are usually listed. You know, the nine I take every day, including for blood cancer.

“None.”

Beware of the randos.

I hope the next person who calls up my chart online, does not refer back to that visit.

Listening is a two-way street. Medical professionals expect patients to listen to their information and instructions. Shouldn’t they listen back to the person who knows his/her body best?

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