On Top of the World

 Ohhh… you guys…. My radiation oncologist is just the absolute worst. He does not care about me at all. He does not take my concerns seriously. He skirts my questions, treats me like I’m stupid, and gaslights me at every turn. I am essentially a human-shaped sack of cells, some of which might contain cancer (or might not?!), and he is the demi-god-warrior-slayer-know-it-all who is there to drop a bomb on them. There is no concern for my long term health, the damage to my thyroid, the damage to my lung, the damage to my muscles and tissue… and most of all, he is gleefully unconcerned about my reconstruction.

He knows more than my oncologist, more than my surgeon, and more than my plastic surgeon about their specialties, but mocks the notion that they know anything about his. I am doing fine, so far, from the actual radiation, but this asshole is really taking a toll on my mental health.

We asked him last week if there was not some way to strike a balance between doing the most we can for cancer while also attempting to preserve the reconstruction. He said that I’m going to have side effects anyway, so I might as well go for the maximum amount of radiation(??!). I said that I have to live in this body for the rest of my life, and that it would be nice not to do more damage than necessary, and it would be nice to not have one side that’s totally mangled. He said as long as there’s no cancer then it looks great to him. 

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He said that he knows that “some women see it as part of their identity” and Brant (thankfully) then intervened and said that men do that, too! That we all are pretty attached to our bodies and the way they look and function! It was just so dismissive and sexist and gross.

He also mentioned that there’s “some difference of opinion”, but that plastic surgeons should do reconstruction after radiation so that he wouldn’t have to deal with having something in the way of his work. My plastic surgeon mentioned upfront that some radiation oncologists are difficult and/or lazy. I guess I hit the jackpot…

For what it’s worth, most plastic surgeons will not do reconstruction after radiation because the tissue gets so mangled, scarred, and essentially glued together that it doesn’t give them much to work with. There is a high probability of complications and the outcome is typically not great. My tissue expander is designed to (hopefully) at least keep a pocket open to try to have a place for the implant to go. My plastic surgeon was positive that we would not be able to start reconstruction AFTER radiation. This seems to be the standard, based on people I’ve spoken with in online groups.

Anyway, I asked some other questions, and he essentially just kept referencing the fact that yes, there are risks and that’s why they had me “sign the consent forms”. He brought up the consent forms several times… yes, I signed them so I could start treatment, but that doesn’t mean I don’t have concerns! WTF?! 

Everything about my interactions with him feels wrong- like, screaming in my head to gtfo wrong! I never ignore this with doctors, but I’ve felt so trapped because it’s the only local option. I don’t know that I can keep this up, though. I’ve also been in contact with someone who had the same experience with this guy, and who knows of docs at another hospital who won’t work with him due to burns and over treatment. I know it’s not just in my head.

I am going to reach out to my other doctors tomorrow and see if I have any other options. My problem is not with the treatment- if another doctor thinks that I should do this amount of radiation for the best outcome, then I will- regardless of risk to my reconstruction/skin/etc.  I also want to put cancer killing as the highest priority over all of the other stuff! But I need to feel like the doctor providing the service is trying their best to give me the treatment that’s right for ME, and this guy is… not. I am unimportant and irrelevant. This is not how patients should be treated, and it makes him a bad doctor, regardless of his other skills. I need a change.

There are also some issues with the facility, but I’m still too wound up about the doctor to get into all of that right now.

I’m other news, my hair is starting to grow back. It’s hard to tell how it’s going to turn out. Some of it is pure white, but other strands started out white but are coming in darker at the root. It’s not all coming it at once, so I still have bald patches. I also barely have eyebrows or lashes. I don’t really mind this- I normally wear glasses, anyway, but the missing eyelashes cause a lot of discomfort and they continue to fall out (usually INTO my eyeballs…).

Regardless, I still pretty much feel like this-

😆😂🤣