Hoops
2009; Wolters Kluwer; Volume: 31; Issue: 20 Linguagem: Inglês
10.1097/01.cot.0000363661.09960.32
ISSN1548-4688
Autores Resumo“Every headache is a brain tumor; every ache, a met.” Among patients recovering from cancer treatment, such anxieties are so common they've become cliché. “Not me,” I announced after completing my initial chemotherapy. “You won't see me catastrophizing about every little twinge.” My noble plan might have worked, too, had I not developed post-treatment infections and colitis, or six recurrences in as many years. Or had my recovery not included a litany of benign but bothersome aftereffects that can be seen following treatment. Early on I used humor to deal with ongoing problems. After being diagnosed with my first recurrence, I teased (spoken in my best upstate New York Borscht Belt): “I found the cure for fear of recurrence: Go ahead and have one; then you'll stop worrying about it!” Wrapping silliness around a kernel of truth was healing. So was replacing my efforts to be fearless with more achievable goals: developing the confidence that I could deal with whatever happens. And that's when I started talking about hoops, telling friends and family, “I'll be jumping through hoops the rest of my life. As long as my doctors have diagnostic and treatment hoops for me to jump through, I'm fine.” The hoops image helps manage expectations, keeping me from feeling vulnerable and helpless, and my friends and family from feeling sorry for me. As each medical problem declares itself, my physicians and I assume our respective roles: They hold up the proper hoop(s), I jump, and then we meet on the other side. The past few months have felt like an obstacle course of hoop-jumping. My physicians' choice of hoops has been—and always will be—informed by my history of recurrent lymphoma and the various treatments used to treat it. It should be. Compared with patients who have never had cancer, many survivors are at increased risk of premature development of normal age-related changes, atypical presentations of common medical problems, and poor response to treatment that is usually effective. Thankfully none of my recent problems have had anything to do with my being a survivor. Still, I am sick of it. I hate taking up my oncologist's time with problems that aren't cancer. Except for routine follow-ups, I yearn to be done with doctor visits, tests, and treatments. During my most recent hoop-jumping session, I found myself looking in the mirror and asking my body: “Who are you? Why do you keep doing weird things?” My husband (who since Day 1 has been unfailingly supportive) mentioned, “If I didn't know how much you hate being a patient, Wendy, I might wonder if you want the attention.” Rationally, I'm certain none of this is my doing. Yet with each new problem that pops up, a little voice in my head asks a little louder, “Am I somehow causing this?” Have my physicians ever entertained this possibility, however fleetingly? If our roles were reversed, I would. Clinicians must avoid the trap of over-treating patients whose only real problems are emotional (an error that can be as dangerous as dismissing organic disease as psychosomatic). Here's the problem: Once remission is achieved, everyone wants to put the cancer behind them. Patients want to escape the discomforts, inconvenience, fear, and heightened sense of uncertainty. Meanwhile, clinicians want the satisfaction of a job well done, a feeling secondary to a sense of closure. But as oncology professionals you know that remission or cure does not necessarily mark the end of your patients' health issues. Words matter. They shape our perceptions and ultimately our actions. With this in mind, “hoops” can be a useful metaphor that helps everyone move beyond cancer in healthy ways. For example, those patients reluctant to call your office with anything but an advanced problem might be motivated to report symptoms earlier. Why? Having to “jump through a hoop” feels less scary than having to be evaluated for a recurrence. If, then, you diagnose a serious problem at an earlier stage than otherwise, your “hoop” metaphor may have, indeed, improved the patient's chance for recovery. If your patient's problem is benign, you'll have rescued your patient from unnecessary worry and, if the condition is treatable, from unnecessary discomfort. What if the work-up reveals a false alarm? Try chalking up the episode to the hoop-jumping nature of survivorship. Doing so may minimize any anger patients feel for having been put through the stress of a work-up. Or it may prevent patients from concluding they made a mistake by calling (and thus be inclined to delay reporting subsequent problems). Your patient is in remission. You've done a great job. (Seriously, bravo!) So celebrate, and then prepare yourself—and your patients—for the possibility of post-treatment challenges that keep you on your toes. As for me, I'm doing fine right now. Should yet another problem arise, I'll be okay. As I see it, I jump therefore I am.
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