Cancer Truth Note: #349
I am a big fan of being alive. That does not mean, I cannot be angry when my doctors discount or dismiss the conditions treatment left me with. It should not be enough that we are merely alive. Cancer survivors need the supports to live that life fully, not just survive.
At one point I felt like an alien in my own body.
I was a year out of active treatment and I was sicker than I had been at any point during chemo or the year of herceptin infusions. I was full of fluid. By the end of each day I had pitting edema in my legs and arms. My lymphedema had gone from subclinical garment wearing for working out only to day and night wear. My brain was NOT functioning properly. And, I was not getting enough sleep, waking every hour to off load the fluid that built up during the day.
My GP was concerned. Yet for some reason that fact that I had gained 10 pounds in a month in between running two half marathons was not even a topic for discussion. Breast cancer survivors usually gain more weight than that.
My oncologist “needed” me to stay the course on Tamoxifen. No specific reason, just an emphatic NEED. My gynecologist said that she would do whatever my oncologist said if she was in my shoes, though she did agree the situation was not ideal.
My cardiologist was the only one who took one look at me and said, “No. This is not ok.” Not only that, he said if it is those meds, and since the symptoms went away for the 10 days you were not taking them, we are pretty sure it is. We need to find an alternative. This fluid is not good for your heart and taking a diuretic at the level it was prescribed is not the answer.
Out of four doctors I was seen and heard by ONE.
A couple weeks later I put together that I was actually allergic to tamoxifen. It had gluten in it and I am celiac.
My point here is this, I was begging my doctors to do SOMETHING. The weight gain and the fluid and the rashes I was getting were not ok. I will even venture to say that a non-cancer survivor may have been having very different conversations in those rooms.
As cancer survivors we need our doctors to be our partners, not just to keep us alive with no evidence of disease (cancer), but to help us return to a normal state of being. Even if normal is a bit different than before. When a patient is an avid runner and puts on 10 pounds in 30 days between 2 half marathons that month, that is a red flag.
Do you have a side effect you need help with? Are you getting a runaround?
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