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Missing in Action
I've been reading the responses to this issue but not posting, to try to find the best words I could for it.
It seems to me there at least 3 large groups of people in our society who are missing from the responses to the survey. (Read through the responses posted thus far, and see what you think.):
1. Those with no insurance at time of dx
2. Those who are self-employed at time of dx
3. Those whose work is based at a significant distance from treatment centers
Since I fit well into 2 of those categories I will try to respond for the missing. These folks aren't figments of my imagination, since we all know a large number of people are uninsured, there are many who are self-employed, and there are a lot of people in rural areas.
For me... as a sole proprietor at time of dx... but with insurance coverage from a spouse... living in a town with a small hospital hundreds of miles from oncologists and any major cancer treatment like radiation...
The first thing I faced was the question of how to continue working when my work had to be done locally. Some colleagues were willing to try to step in for me occasionally on actual treatment day, or on days when I was in travel status between my town and the cancer center in Seattle. It never was a question for me of whether or not I could cope with treatment AND work, it was only a question of how. It is far more difficult for others living in smaller Alaskan communities where they not only often have to fly south or to Anchorage, but also have to arrange transportation and housing just to see a PCP to begin with. For these people, especially those without a significant other and/or with children, the dx is not just fraught with the fears of cancer but fears for how to manage daily life. For myself, due to advances in technology I was able to turn my job into one as a computer commuter and take it with me wherever I went; but that also means that I have no time off regardless of what treatment is like.
This is one reason why I feel it is so essential to speak in favor of those most likely not to benefit and who may in fact not actually benefit from the standard recommendations for extensive toxic treatment. While we know that there are some who do benefit, the constant pressure for everyone to "throw the book at it" as if that is the best answer for everyone and as if anyone who questions it is nuts, it may help to explain how crippling that can be in some situations. To scare everyone into doing treatment that can leave them deeply in debt and unable to work is neither logical nor compassionate. To leave them with the impression they have not "done enough" when they have so little choice can be very cruel.
AlaskaAngel
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