I’m continuing to tell the story of my journey with endometrial cancer. I speak openly and honestly in these posts so if that might offend you, please feel free to check out my newsletter or my other writings instead.
“Cancer is not an emergency.”
This was the first line of a response I read in a wonderful cancer support Facebook group I’m in. It’s not a line I would ever lead with to another person going through this nightmare but it has been a recurring theme in my brain ever since I read it so it was probably good that I saw it.
Doctor Time vs Patient Time
I’ve started adding notes in many of my texts to friends and family that “doctors don’t work on Kara Time”. And, that fact is incredibly frustrating.
At the moment, I’m waiting on someone to call me to schedule an appointment for a CT scan and someone to call and let me know what time a meeting is taking place on November 15. And then, today, when I asked a question to my oncologist’s office about the CT Scan order that is in the e-chart system, as something in it contradicted what the doctor told me by phone yesterday, the nurse not only confused me on that specific point more but told me to call their main line to schedule. Yesterday, the doc told me that someone would call me to schedule. GRRRRRRRRR!!!!!
This is a moment when I have to step back and reframe the situation and try to remember that none of this is going to move forward without me and, as I learn more about the potential side effects of these treatments, the more time I want to give my body to get stronger post surgery.
Side effects brings me to my second point for this brief post.
Doctor Goals vs Patient Goals
Doctors have a goal. It’s typically to cure you of your disease. While the best doctors will also care about the side effects that their cure might cause, what I read in the Facebook groups is that a) some don’t seem to care at all and, more often, b) there isn’t a whole lot they can do about the some of the side effects. Typically, it’s the worst of the side effects they can’t do anything about - and particularly those that may not be apparent until weeks or months after treatment ends.
Side effects are a given. The doctors are proposing to shoot radiation straight into my body multiple days in a row for several minutes at a time and pump me full of poison. Bad things will happen to me as a result of both of those things happening to and in my body.
So, as I’ve been preparing for the multi-disciplinary team meeting where I’ll supposedly get a treatment plan and then we’ll proceed with healing poison and X-ray beams, I’m also getting clear on what my goal is. Certainly, getting cured is a practical goal, but I have to examine the cost that comes at and how long I may pay that cost. For instance, the addition of possibly needing radiation has really sent me for a loop this week. I know many people defer radiation and I’m trying to figure out if I should do so as well.
So, if you’re facing the fight for your life, don’t let others force you into a goal or a treatment plan. It has to be your decision and my hope for you is that all those in your life abide by and support you in that decision.
For me, for now, I’m gonna fight like hell. But I’m going to ask the docs about 200 questions before we decide exactly what that fight looks like.
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