Being Your Own Advocate

In the last several weeks, I have learned a lot about what it means to be your own “advocate”. An advocate is a person who speaks or writes in support or defense of a person, cause. So when I say you need to be your own “advocate”, I mean you speaking on your behalf – and asserting how you feel – when it comes to your own healthcare. If you are too ill to do so, then find a person you trust to stand in for you. It is really terrible that a discussion on this topic is even needed, but that is something I will leave for another day…

Four weeks ago, I started to complain of pain in my right thumb. My oncologist (as usual) said “oh…you shouldn’t be having that.” It was not the first time I ignored this warning sign: invalidating how I felt to make it seem like I really did not have a problem. I could not even fold laundry, and my thumb would continually lock up to the point I wanted to cut it off. Even after two office visits with the oncologist, it was dismissed as something that shouldn’t exist. Well, just because it doesn’t exist to your doctor – doesn’t mean it is NOT an issue (this is where you – the advocate – comes in).

Thumb spica brace

Thumb spica brace

I have been swapping hormone-based chemotherapy pills since April of this year. I went from Arimidex to Aromasin – and now, it is Tamoxifen. Each time I switched, I would go off the previous drug for two weeks. The entire time I was “detoxing”, I wondered if I was putting myself in danger by being completely off the medication. Truth be told, Aromasin has a known side effect called “trigger finger” – or Stenosing tenosynovitis – which is quite painful. I saw my orthopedic surgeon, with the blessing of my *new* oncologist, and the orthopedic surgeon confirmed I had it.

Even worse, I have Stenosing tenosynovitis developing in my left thumb as well. I am now in a thumb brace (called a thumb spica) for the next 6 weeks. Had I been my own advocate from the beginning on this issue, I would have been halfway through the required time for me to wear one. Just because your doctor/oncologist tells you a side effect has never or rarely happens (I heard that so many times), doesn’t mean you do not have it or won’t get it. If you are having an issue, tell your doctor and give them the opportunity to treat you.  If they do not, seek a second opinion immediately.

Author Note: This post is dedicated to Gary, my rock and advocate, when I can’t be my own.

1 Comment

  1. Candy

    Amazing!

    Reply

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