late effects - the sharper side of the double edged sword
More commentary on the October 12, 2006 issue of the
New England Journal of Medicine. As I briefly mentioned in a previous post, this issue includes study results and commentary on the late effects of childhood cancer treatment.
This is the most comprehensive study complete thus far, with over 10000 cancer survivors included. It is heartening to finally see an admission in the medical community that life isn't always rosy for cancer survivors. I'll be most happy when it's aptly deemed completely inappropriate for health professionals (or anyone else) to tell survivors that 'they should be just grateful to be alive', when often what they've been given could not by normal standards be called 'a life'.
In the "Focus on Research" commentary, Dr. Philip M. Rosoff, MD notes that the evidence of the significance of these effects is "worrisome news." (Rosoff, 2006).
For childhood cancer survivors, it isn't news at all. I have been reporting my late effects to oncologists since 1990, and was routinely dismissed. The impact the cognitive "sequelae" has had on my life has been devastating. My family still treat me as 'the malingerer'- once you get a lable like that, which was slapped on me nearly two decades ago by the doctors who were supposed to be caring for me, they stick. Needless to say, our relationship is also devastating most of the time because they can't get past the guilt of their mistake - acknowledging that I was right all along would force them to face them to deal with it.
My problem is that in the grand scheme of 'late effects', on the available measurable tests I didn't fare too badly. On the surface, my physical appearance is fine (my thyroid and arthritis joints are another matter). However, I have to live with what you don't see and won't acknowledge because it's 'awkward' ... such as the reality of how ppl treat me once they figure out I'm a bit 'slow' and socially inept - after that, just call me a walking target. (BTW, on average I'd say it takes 1-3 conversations, only 1 if I'm in a group situation - then it's about 1-3 seconds).
After that, I'm forever deemed
1) the dummy ppl have around to make themselves feel smarter!
2) the loser ppl have around to make their slow social calendars seem fuller
3) the patsy you use when you need a stupid errand run that no one else will do.
4) the 'knob' who doesn't get any jokes. any.
5) the 'normal' looking cancer survivor whom oncologists can add to their ego bank.
What category of late effect would that fall under? Unfortunately, as comprehensive as the NEJM article is, there is no mention of the social fallout.
New England Journal of Medicine. As I briefly mentioned in a previous post, this issue includes study results and commentary on the late effects of childhood cancer treatment.
This is the most comprehensive study complete thus far, with over 10000 cancer survivors included. It is heartening to finally see an admission in the medical community that life isn't always rosy for cancer survivors. I'll be most happy when it's aptly deemed completely inappropriate for health professionals (or anyone else) to tell survivors that 'they should be just grateful to be alive', when often what they've been given could not by normal standards be called 'a life'.
In the "Focus on Research" commentary, Dr. Philip M. Rosoff, MD notes that the evidence of the significance of these effects is "worrisome news." (Rosoff, 2006).
For childhood cancer survivors, it isn't news at all. I have been reporting my late effects to oncologists since 1990, and was routinely dismissed. The impact the cognitive "sequelae" has had on my life has been devastating. My family still treat me as 'the malingerer'- once you get a lable like that, which was slapped on me nearly two decades ago by the doctors who were supposed to be caring for me, they stick. Needless to say, our relationship is also devastating most of the time because they can't get past the guilt of their mistake - acknowledging that I was right all along would force them to face them to deal with it.
My problem is that in the grand scheme of 'late effects', on the available measurable tests I didn't fare too badly. On the surface, my physical appearance is fine (my thyroid and arthritis joints are another matter). However, I have to live with what you don't see and won't acknowledge because it's 'awkward' ... such as the reality of how ppl treat me once they figure out I'm a bit 'slow' and socially inept - after that, just call me a walking target. (BTW, on average I'd say it takes 1-3 conversations, only 1 if I'm in a group situation - then it's about 1-3 seconds).
After that, I'm forever deemed
1) the dummy ppl have around to make themselves feel smarter!
2) the loser ppl have around to make their slow social calendars seem fuller
3) the patsy you use when you need a stupid errand run that no one else will do.
4) the 'knob' who doesn't get any jokes. any.
5) the 'normal' looking cancer survivor whom oncologists can add to their ego bank.
What category of late effect would that fall under? Unfortunately, as comprehensive as the NEJM article is, there is no mention of the social fallout.
posted by nancy at 7:09 AM
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