I’m delighted to present a guest post from cancer patient Monique Doyle Spencer, whose husband found the henna relief for hand-foot syndrome we mentioned yesterday. She is a stitch. To me she’s about as empowered as they get, but she says she’s always felt a bit cowed by all this e stuff. We persuaded her to gift us with an essay. –e-Patient Dave
It used to be true: I didn’t understand this “e” thing — e-patientcy, e-patienthood, e-patience, e-patient-nation. I was more of a d-patient – disengaged, disinterested, detached. The only “e” I had was “electronic,” but why would I use that “e” for medicine when there are so many jokes to find and I have a discount coupon for www.more.stuff.i.want.and.if.i.buy.even.more.ill.get.freeshipping.com?
I suppose everyone in the e-patient movement has that e-ureka moment when they get it. Mine is an upside down moment, because it required no engagement on my part at all. In a routine check-up with my oncologist, six years after my diagnosis, he ordered a bone scan. I had hurt my back doing yard work the night before. You know the rule: wait two weeks before you panic about new pain. So what was he doing ordering a scan? I asked him if he was the real Dr. Munchhausen – and sure enough, in two weeks that yard work pain went away. But the bone scan he ordered said that I had metastatic cancer up and down my spine.
I asked Lowell Schnipper why he ordered that scan. What he said knocked me over: “You weren’t yourself.”
So I realized why I’m not an e-patient: it’s because I have an e-doctor. How many doctors observe their patients closely enough to know that one of them is not herself? I also have an e-nurse, who notices that I’m dehydrated when I have no idea that I am. I think this is amazing because the people who usually notice me carefully expect a hefty tip.
Six months later, chapter two began. I was aching from Hand-Foot Syndrome caused by Xeloda. I couldn’t stand the blisters. Nobody’s remedies helped. Then my long-suffering husband, doing more and more research, discovered a study in Turkey using henna for HFS – very successfully. And it worked on me. That’s chapter two: I have an e-husband.
As the chapters speed by, I notice that I also have e-friends. E-children, a lot of the time. E-neighbors. Only the dog is not E, because it’s hard for him to be E when he is napping for as long as I want to be. Everyone else in my life? Nothing but Es.
So I’m a c-patient: Complacent. Now that I’ve been shocked by my experience I know that’s true. My e-doctor and e-husband are both older than I am, and they take such good care of me that I will outlive them. What happens then? My e-friends, my e-neighbors, will eventually move away on their own journeys. I will be left with that non-e dog, the p-canine. I will have no e-patient muscles developed. Scary.
I haven’t changed yet, but I’ve started up the first step of the Irish ladder: I do feel terribly guilty. There’s this whole e-patient movement doing all kinds of interesting things and thinking, while I am taking an afternoon nap right after my morning one and before my evening snooze. I feel the same way when I write checks for the Walk for Hunger for other people to walk and I stay home eating all day.
Step two of the ladder will be fear: what will happen to me when I am out of marbles and have no e-friends left? When I’m a stranger to my doctor, just like everybody else?
I guess I get an F as an e-patient for now. Probably will for a while. Eventually, I’ll have to get into it, because somebody will do a study. Remember the Mayo Clinic study proving that optimists live longer then pessimists, which didn’t surprise the pessimists, not one bit? Well, somebody is going to prove what we already suspect: e- patients get better medical care, without being rich. C-patients get sub-standard care. E-patients live longer. And, e-vidently, e-ssentially, better.
Monique Doyle Spencer
Dollink: I get that you don’t consider yourself “e,” but speaking as someone who does have the secret decoder ring, you are one.
Look: you just started a blog to share info with others about the side effects of your drug, because it’s not available from “the establishment.”
That’s what e-patients do. (Empowered and equipped, they get to do what they see needs to be done, and they don’t need a medical degree to help others: they can just do it.)
Don’t worry, we won’t extract an annual e-fee from you, nor a be-fee for being one. I’m just sayin’.