Since I can't rant to the doctor (a side effect of being a million miles away from my mom right now), you guys get to hear all about my mom's oncologist's incompetence! This post ended up longer than I intended. Sorry.
We went out of our way to find a hospital farther from our home, that costs money in tolls to get to and half an hour of driving, because we were assured that the University of Pennsylvania hospital is the best one around and my mom's insurance let her use it. We got this doctor that my mom was a little wary of, but I liked well enough - let's call her Dr. I (for incompetent). She argued with my mom over whether or not she was getting the port because mom didn't want it and the doctors did, but eventually gave in and agree to give her chemo through a PICC line. Her nurses did not understand the concept of a PICC line and set her up to get it at the same time she would have had to for a port, i.e. a week in advance, leaving her unable to sleep for a week because of an IV in her arm that she didn't need (Mistake #1).
Then, a day before she was scheduled to get her chemo started, she got a call at work from a nurse who informed her that her insurance wouldn't accept them as a provider and that she's had all her appointments cancelled. This was because, although she told them that they had to call because of the student plan she has, they decided to fill out an online form instead that gave them the wrong information (Mistake #2). After she called back and wasted an hour of her workday telling them over and over again "just call the goddamn insurance company", she managed to get her appointments reinstated.
So she goes through chemo, and at the end of day 2 of her 4-day treatment, she starts having chest pain. She calls the 24 hour emergency line because that's what the paper said to do, and is told the oncologist on call isn't responding and they'll call her back later. By then she's in so much pain when it comes on that she's puking, not from nausea, just from pain. They never call back (I would call this Mistake #3 but it wasn't the fault of the doctor I'm ranting about so that's just other person incompetence). The next day at radiation, she tells them about the pain and they take her off the chemo pump 16 hours early and send her to the ER to get checked out. She checked out fine after multiple EKGs and the pain went away once she got off the pump, so they let her go after saying that Dr. I would speak with a cardiologist and tell her what they need to do for the second round of chemo - whether it was safe to use the line, whether it should be an all-at-once dose, whether it should be oral, etc.
Three weeks pass where mom is just doing radiation. She hears nothing from Dr. I. I should take a moment here to digress and mention that she didn't show up for the pre-chemo meeting, she didn't show up to take mom off the chemo, she didn't show up in the ER (Mistake #3). We haven't seen this doctor since the very first time we came in for a consultation. When there's one week left of radiation before the chemo starts up again, mom finally sees her - and she says she hasn't talked to the cardiologist at all (Mistake #4). She sets up an appointment for the next Tuesday for my mom to meet with the cardiologist alone, and tells her that they plan to have her taking oral chemo, which makes her very happy.
The next Tuesday, as promised, she meets with the cardiologist. The cardiologist tells her that she just had bad heartburn and that they'll give her heartburn medication and put her back on the pump. She doesn't know which chemo treatment is what's actually going to happen to her, so she calls Dr. I, who is now on vacation (Mistake #5). When she finally gets the doctor to call her back, she's told that she's going to be on the pump again instead of oral medication, which she would have known weeks before if Dr. I had bothered to meet with the cardiologist when we were told that she would.
That was this past Tuesday, the 10th. This morning, my mom has her regular weekly meeting with her radiologist and a competent nurse that she likes, I'll call her Connie. She tells Connie that she hasn't gotten any calls about the chemo that's supposed to start next week, that she was told she would have her line in on Monday but no one's confirmed it with her, and that she's worried. Connie promises to follow up and make sure the appointments are set and she'll get her chemo. Connie follows up (because she's competent!), and they didn't set any appointments whatsoever (Mistake #6). Mom calls them, trying to figure out what the fuck they're trying to do, and is told that the people that put in PICC lines are never in on Mondays, which means Dr. I lied to her to begin with (Mistake #7). The nurse she's on the line with tells her that she can't fit her in until Thursday; mom is curious as to how they're going to start chemo on Monday and put her line in 3 days later (Mistake #8). When she tries to explain to the nurse how IV chemotherapy works, the nurse says she'll try to get a better appointment (which would have to be tomorrow, Friday, because they have weekends and Mondays off) and hangs up.
By now, mom is pissed. She has no idea how she's going to get her chemo on Monday, if she'll even get it, and she has no idea why the concept of chemo is so difficult for this office. She gets a call back later in the day. This is a new woman. This one pulls up an order to get a port put in her chest from August 19th and claims that it's still good and she has to do the port (Mistake #9). Mom explains that they decided against the port, that she's doing the PICC line, and that she just talked to Dr. I on the phone two days ago and it's going to be the line. The nurse argues with her over how this month-old order apparently trumps what was actually decided on the matter (Mistake #10). She refuses to tell my mom her name when she's asked, and eventually says she'll see what she can do and hangs up.
Connie promises my mom that she'll call her before she leaves for the night so they can sort all this out. It's now 8PM and there's been no call. As of this second, my mom has no idea how she's going to get her chemo on Monday - she's afraid she's going to walk in tomorrow and have them telling her "by the way we're going to do your line right now" with no preparation. But she's also afraid that they won't have the oral medication ready on Monday if they don't do the line, because she doesn't trust Dr. I and the incompetent cronies to even make a phone call about this. She's considering calling tomorrow and asking to be switched to another doctor, despite the confusion it will cause the Friday before her chemo is supposed to start back up, because she has no energy left to fight with these people while her skin is peeling off her body and she's trying to work full time, go to school full time, and go to the hospital every day. She's wondering what would have happened if she had been feeble-minded and unable to fully participate in her own treatment like she's been doing and trusted this office to take care of her. We're both fully convinced that this office has probably killed people with their inability to handle a basic 6-week cancer treatment.
I'm frustrated because there's nothing I can do to help her. I want to call the doctor's office and scream at them to stop being stupid, or write someone somewhere to make them realize how messed up this is. I can't even really give her good advice on how to handle it, I don't know if it's possible to change this late, I don't know what she can handle mentally when she's already at the end of her rope, and I don't know if this doctor's office can be trusted if she holds their hands and tells them exactly what to do very slowly. This whole cancer thing is my first extended experience with doctors, and I really don't think I'll look at them the same way again.