@Valerie, so grateful for this, and I hope what I say below doesn't convince you that my words are to be taken with grain of salt.
Because,
@Diane: I know you meant well. Still, your words seemed very much those of someone who has not experienced cancer or thyroid cancer first-hand.
Because honestly, when shocked by diagnosis at age 30, all I wanted was as much practical, straightforward information as possible. I felt trivialized by needlessly upbeat phrases like "good cancer" which only served to make me feel like I shouldn't and couldn't complain and that it was unreasonable to sink into more than a year of depression following diagnosis. And, for all the support of wonderful friends (and some who weren't -- serious illness can be a useful way to weed-out those who maybe didn't belong in your life to begin with), I was and am in this disease with myself alone.
It's brave for patients to speak out about actual experiences with the disease. We all need a hell of a lot more patients to tell the truth, and not feel like they're unimportant.
We *desperately* need more than a few more endocrinologists willing to listen to patients instead of merely reading out lab results.
Our culture needs more honesty from cancer patients in general, as the incessant cheeriness thrust on people with diseases far, far worse than mine -- see Barbara Ehrenreich's writings on breast cancer, for example -- can be profoundly alienating to many. (Of course, I've no doubt this helps many others.)
Of course all things are relative, and I'm lucky enough to have a more minor cancer.
But glossing over issues related to disease is a serious issue in the medical community. The vast majority of what I've learned about thyroid cancer came not from treatment at a "top medical central" but from fellow patients (...I hate the word "survivor" in this context, for I'm more just...alive). I've never been so grateful to find a group of plucky, mostly female women [on the internet] than those on the thyca mailing list.
No doctor advised that synthetic thryoid would not feel same as natural (though in retrospect, a big DUH to me): after no trouble w/ weight in my whole life, I'd gain 20+ lbs over 2 years, and that excessive sweating (such that it's not actually manageable, in any way, at all), rapid heartbeat, water retention, insomnia, brain fog/forgetfulness, etc. make me regularly "joke" that I'm going through menopause.
True, thyca patients don't have it so bad most of the time. We take our meds (with side effects) and dutifully go in for blood work, not such a big deal. We have our scans, we fear the future surgeries worse than the prior ones, and the cancers that will come after this one.
Downplaying the reality of disease sure didn't help me survive 2 very rough years getting used to my new life, and it didn't change the fact that I had and have cancer.
For this, and other cancers, are not cured, but managed. For vast majority of "lucky" thyca patients such as myself, life goes on. But when the body has betrayed us like this -- especially, I think, those diagnosed at younger age -- life continues in a very different way.
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@Valerie, so grateful for this, and I hope what I say below doesn't convince you that my words are to be taken with grain of salt.
Because,
@Diane: I know you meant well. Still, your words seemed very much those of someone who has not experienced cancer or thyroid cancer first-hand.
Because honestly, when shocked by diagnosis at age 30, all I wanted was as much practical, straightforward information as possible. I felt trivialized by needlessly upbeat phrases like "good cancer" which only served to make me feel like I shouldn't and couldn't complain and that it was unreasonable to sink into more than a year of depression following diagnosis. And, for all the support of wonderful friends (and some who weren't -- serious illness can be a useful way to weed-out those who maybe didn't belong in your life to begin with), I was and am in this disease with myself alone.
It's brave for patients to speak out about actual experiences with the disease. We all need a hell of a lot more patients to tell the truth, and not feel like they're unimportant.
We *desperately* need more than a few more endocrinologists willing to listen to patients instead of merely reading out lab results.
Our culture needs more honesty from cancer patients in general, as the incessant cheeriness thrust on people with diseases far, far worse than mine -- see Barbara Ehrenreich's writings on breast cancer, for example -- can be profoundly alienating to many. (Of course, I've no doubt this helps many others.)
Of course all things are relative, and I'm lucky enough to have a more minor cancer.
But glossing over issues related to disease is a serious issue in the medical community. The vast majority of what I've learned about thyroid cancer came not from treatment at a "top medical central" but from fellow patients (...I hate the word "survivor" in this context, for I'm more just...alive). I've never been so grateful to find a group of plucky, mostly female women [on the internet] than those on the thyca mailing list.
No doctor advised that synthetic thryoid would not feel same as natural (though in retrospect, a big DUH to me): after no trouble w/ weight in my whole life, I'd gain 20+ lbs over 2 years, and that excessive sweating (such that it's not actually manageable, in any way, at all), rapid heartbeat, water retention, insomnia, brain fog/forgetfulness, etc. make me regularly "joke" that I'm going through menopause.
True, thyca patients don't have it so bad most of the time. We take our meds (with side effects) and dutifully go in for blood work, not such a big deal. We have our scans, we fear the future surgeries worse than the prior ones, and the cancers that will come after this one.
Downplaying the reality of disease sure didn't help me survive 2 very rough years getting used to my new life, and it didn't change the fact that I had and have cancer.
For this, and other cancers, are not cured, but managed. For vast majority of "lucky" thyca patients such as myself, life goes on. But when the body has betrayed us like this -- especially, I think, those diagnosed at younger age -- life continues in a very different way.
January 30, 2012 - 5:59amThis Comment
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