GPS For Survivors

One good way to make someone crazy is to continually invalidate their experience. There are many ways to accomplish this, all of them mild to moderate variations on “gaslighting” someone, or “ruthlessly manipulating an individual, for nefarious reasons, into believing something other than the truth.” I’ve been on the receiving end of several versions, more than I’d care to number, but lately, I’ve been gaslighting myself a little. You almost can’t help it. When you keep turning to the health care system for help over and over and over again, and you keep not getting it, or getting help that doesn’t help, or falls short of helping, and your friends don’t know what to say to you anymore, or they get tired of listening to you, and you’re just so sick and tired of feeling sick and tired that you can’t stand your own company anymore, well, that can make a person feel a little nuts.

I wanted to write something pithy and incisive about this topic, but I’m too worn out at the moment. What else is new. There’s nothing quite like a life-threatening illness to to use up all your reserves. Especially when most of the people who are supposed to help you, who get paid to help you, don’t.

Being diagnosed with cancer and then being treated for it is a sure-fire way to complicate your life.
All too often, after active treatment is over, cancer patients are turned loose and expected to “move on” from being patients to survivors without any guidance about how to do so. It stands to reason perhaps, that after navigating the labyrinth of cancer treatment, an effective strategy for long-term recovery might center on simplifying your life. I certainly wish that had occurred to me, but I took something of the opposite tack, which was to pretend I was invincible and that breast cancer was just a bump in the road, and survivorship merely required me to step back into my old life.

Instead, it was more like navigating a border crossing into a foreign land, where jack-booted, scary-looking dudes with machine guns stopped me several times to check my passport, run me through a full-body scanner, interrogate me for an hour, and then direct me to a road that was not the smooth, straight thoroughfare of my former life, but a maze of crooked, poorly lit, pothole-ridden tracks through the woods, with very few roadsigns and hardly any paving. Or gas stations. Or maps. Or GPS.

I wasn’t completely without a map. In fact, I had lots of friends and resources at my disposal, plus a lot of experience surviving crises. But what I didn’t have was fair warning and realistic expectations. And I didn’t have a physician or other clinician that would serve as my go-to person when problems arose and I lost my way. Except for my primary care doc, the physicians involved in the active treatment of my cancer were, as one of my nurse friends would put it, “as useless as tits on a bull.” Sorry, all of you, but really, you just weren’t there when I really needed you, which was long after you slashed, burned and poisoned me.

Thus unprepared, what I did was scoot back to my demanding full-time job and attempt to resume my complicated full-time life within days of finishing active breast cancer treatment. And it’s taken me an entire year to realize how stupid a notion that was. But finally, I have acknowledged the error of my ways, no thanks to my original triumvirate of physicians, and I’m doing what I probably should have done in the first place. I’ve cut back my full-time work hours to 3 days a week, I’ve been seeing a physical therapist for the pain and cording in my right armpit, I’ve got some decent drugs, and I’m beginning to do some regular gentle exercise. I also quit taking tamoxifen, which was making me feel like I was lost in a fog. I did this with the after-the-fact agreement, by the way, of the second medical oncologist I went to, after having given up on the first one. She actually used the words “quality of life” — the first time I’d heard them uttered to me by anyone I’d encountered in the cancer-treatment world — and acknowledged that it wasn’t worth taking a drug that only promised a single-digit decrease in my recurrence risk when it affected me so adversely. I am working on a post about this (“Better Living Through Chemistry”), which will appear soon.

Why did this happen, though? Why is the health care system and its clinicians so badly prepared to help people with cancer make cogent choices and navigate long-term survival? I hate to relate this, but more than once has a survivor friend told me some version of the following: she goes to her rad onc or med onc feeling poorly, asks for help, doesn’t get it, asks if she can get help elsewhere, and is told, “What do you want? We did save your life.” Uh, thanks, pal, but isn’t that your damn job? I mean, whadduya want? A medal?

It’s not difficult to start thinking that no one in oncology gives a rodent’s derriere about this problem or even recognizes that there is a problem. But, take heart. There may be a ray of hope. In 2006, the Institute of Medicine (IOM) of the National Academies published the findings of a committee they had formed “to examine the range of medical and psychosocial issues faced by cancer survivors and to make recommendations to improve their health care and quality of life.” Fifteen years ago, in 1985, Fitzhugh Mullan, a physician and cancer survivor, identified the need for accomplishing such a task when he said, “The challenge in overcoming cancer is not only to find therapies that will prevent or arrest the disease quickly, but also to map the middle ground of survivorship and minimize its medical and social hazards[.]” The IOM published the committee findings in a book, From Cancer Patient to Cancer Survivor: Lost in Transition, and in its companion book, Implementing Cancer Survivorship Care Planning, which you can read online at the link on the left. The two books not only include recommendations, but outline the means by which physicians and hospitals and cancer centers can carry out these recommendations and help the now ten million cancer survivors in the U.S. not merely survive their cancer, but live long, strong, and well.

Nothing is ever simple in health care, though, and trying to get the word out on this is like trying to steer the Queen Mary in a pond. Even the term “survivorship” is interpreted in several different ways. Quality of life is another concept that defies a standard definition. And the long-term and late effects of cancer treatment, which in one way or another impact the rest of our lives, are still inadequately researched and recognized. Aziz and Rowland (2003) defined them as follows:

  • Defining Late- and Long-Term Effects of Cancer Treatment
  • Late effects refer specifically to unrecognized toxicities that are absent or subclinical at the end of therapy and become manifest later with the unmasking of hitherto unseen injury because of any of the following factors: developmental processes, the failure of compensatory mechanisms with the passage of time, or organ senescence.
  • Long-term effects refer to any side effects or complications of treatment for which a cancer patient must compensate; also known as persistent effects, they begin during treatment and continue beyond the end of treatment. Late effects, in contrast, appear months to years after the completion of treatment.

I can tell you from personal experience that physicians can be somewhat reluctant to identify these effects and pin their appearance conclusively on cancer treatment. This reluctance can prevent us from getting appropriate treatment and support, not to mention exacerbate the material and financial consequences for all of us who are forced to work part-time or not at all after treatment, while we struggle to get social service agencies and health care providers even to recognize that our problems evolve from it in the first place. “We’re all guinea pigs,” one of my friends has said in disgust. And to a large degree, that is true. But we’re guinea pigs who can talk and complain and insist and testify. We may not always be up to the task, but we can try.

Yes, heaven knows we all want a cure. But in the meantime, we who have survived thus far have to keep living. And we deserve to keep living with the compassion and knowledgeable support of the folks who got us to this point in the first place. I was never even provided with a patient survey after my treatment to provide some feedback. So, one of the first things I’m going to do this year is to sit down and write to my surgeon, my oncologists, and a few cancer care administrators, and give them some. My letters might go right into the shredder, but chances are that they won’t. I know something about how that works in health care. In the hospital system that employs me, letters from patients are taken very seriously.

So, that’s my short-term plan to strike a blow for survivorship and maybe help improve things somewhere down the line. It’s a start anyway. I might tick a few people off, but so what? I’m pretty tough. After all, I did survive cancer.

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Saturday, January 23, 2010 at 07:01 pm, filed under Cognitive Dysfunction & Depression, Fatigue, Health & Healthcare, Making A Difference, My Work Life, Nitty Gritty, Research, Survivorship and tagged , , , , , , , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

16 Responses to “GPS For Survivors”

  1. Brilliant. Amen, amen, amen.
    Thank you.
    Really. Arguably your best work yet, and you have produced some most excellent stuff. (Why don't you make a 600-word version and submit it to a major newspaper as an op-ed. Please? I'd be happy to read and comment on a draft!)

  2. I grew up being gaslighted by my mom – it did very bad things to my self-esteem!

    I think it's great that you are going to sit down and write some letters…who knows, maybe they will be read, and maybe they will make a difference!

    Love your blog!

  3. Excellent. Like you need another project or something to drain your time and energy…..but…..Have you thought about starting an organization that would educate, deal with, confront docs about this? I think you would blow them away. I will help in any way I can.

  4. Kathi, Am happily home again now so that I can follow you on web. Glad you scaled back to 3 days, I'm sure the fur kids are happier, too. And all I need is the air I beathe! To read your blogs is a gift…..keep on giving.

  5. Kathi, you nailed it. Gaslighting, and ignoring the fall out after the heroic effort to save our lives–aren't we ungrateful when left with chronic disability?
    Beautifully written.

  6. Okay. Your comment thing did not recognize me.

  7. It is quote"like navigating a border crossing into a foreign land, where jack-booted, scary-looking dudes with machine guns stopped me several times to check my passport, run me through a full-body scanner, interrogate me for an hour, and then direct me to a road that was not the smooth, straight thoroughfare of my former life, but a maze of crooked, poorly lit, pothole-ridden tracks through the woods, with very few roadsigns and hardly any paving. Or gas stations. Or maps. Or GPS"
    I simply couldn't say it better…

  8. Can someone please explain what ‘gaslighting’ is?

  9. What does it say that I read this, and thought “right on!” the whole time, then went to comment same and discovered I’d already read this some time ago but had no recollection of it? Hmm? My never-good-but-even-more-atrocious-post-chemo-memory aside, this is still a great essay. It definitely has withstood the test of time. Well done.

  10. Thanks, Jeanne! Good to know it stands the test of time AND chemo-brain!! LOL. And thanks for the comment on FB about the current post, “Hormones + Breast Cancer = Spin?” I was quite pleased myself with that line about the over-eager onc’s. Bunch of blinkered, feckless peabrains…

  11. […] in book form,From Cancer Patient to Cancer Survivor: Lost in Transition. [See my previous post, GPS for Survivors for further details and […]

  12. […] heck? Back in 2010, I wrote a few posts about the existence of survivorship care plans. The first post highlighted the publication of a book by the Institutes of Medicine called From Cancer Patient to […]

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