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Advice to a Cancer Patient Facing News He Didn't Want, by "e-patient Dave" deBronkart

Posted Apr 17 2012 11:14am

 

We are honored to share this guest post from cancer survivor,   "e-patient Dave" deBronkart . An international keynote speaker on healthcare, e-patient Dave is highly regarded for his expertise in helping patients become more empowered and engaged. In this post, which orginally appeared on Dave's blog , Dave shares his powerful advice to someone who got the news nobody wants to hear and is scared of disappointing loved ones. 

by Dave deBronkart

Recently an online friend from long ago introduced me to someone who's got a cancer case that's not going well, looking for any advice and counsel. He wrote today to a big cc list, with unfavorable news (I'm obscuring all details), and I replied.



In the email he expressed understandable concern about the next treatment, discussed his physician's news about the odds, and said he doesn't want to disappoint anyone. This is my response.



Note: I'm not saying anyone should be like me, nor that I'd say this to any other individual. This is just my response to this one person. I'm posting because I hope it will be of use to someone else someday - perhaps light a candle of hope and determination in someone.



________________



K,



This is not the news we want, but since H. introduced us (as we're both cancer patients) and you cc'd me on this, I'll presume you want feedback and here it is.



(Folks, this will be long, and blunt, so feel free to ignore it.)

First, I feel for you. I faced imminent death (median survival 24 weeks) three years ago so I know what it feels like. For my disease the web sites said "almost all patients are incurable," "prognosis is grim," "outlook is bleak." And I have friends who are still going through this all the time. Visited one today.



And, here I am three years later - my doctor's main advice after this year's physical was back to normal: I should start losing weight, like any middle aged schlumpf.



Remember, probabilities apply to populations, not individuals. Nobody knows what will happen to you, and anyone who says otherwise is lying. Something like 1% of all cancers disappear spontaneously, and science has no answer for that. (And I say that being trained as a scientist - MIT graduate and all that.)



Wisecrack: "Statistically, the average person has one ovary." Absolutely accurate - but it tells you nothing about any individual.



Second, I know first hand that the only useful approach is to find out what's so, find out what your options are, and ask "What's next?" Anxiety is understandable but it's useless. You can unlearn it: it helps nothing, consumes your energy and psyche, and actually weakens your immune system. You may want to get some advice or coaching or therapy or whatever in things like mindfulness, relaxation, or even one of Bernie Siegel's Exceptional Cancer Patient retreats . My family was going to send me there but I went into treatment first and got better. If I were in your shoes today, I'd do it in an instant.



Two books I like: There's No Place Like Hope and Anticancer: A New Way of Life by an MD who twice beat an unbeatable cancer (brain cancer!), despite his own oncologists telling him it wasn't likely. You wanna be like him? Sounds good.



Honestly I'm not sure your doctor did you a favor by emphasizing the negative. He may feel an obligation to tell you the odds (some docs are trained that way), but did he also spell out everything you can possibly do to improve those odds? THAT's what deserves your attention. You're already well aware that you might die - okay, so now what are the ways you can reduce that chance?



I'm dead serious about that. Been there, and that's the approach I took.



For instance, what have you been doing to make yourself laugh? Laughter's been proven to be good for the immune system. I had my family send me the whole first season of Saturday Night Live on DVD, and every Bugs Bunny cartoon ever recorded. What makes YOU giggle yourself silly? Are you doing it? (Even if you're dying you can have fun in the process!)



And just to be clear - if you die you won't "disappoint" anyone. Do NOT get into a head game of feeling guilty about having cancer! For heaven's sake. I think you need to get in touch with what YOU CARE ABOUT: say "I will never give up, because I care too much about all of you to say goodbye before I absolutely have to!" THAT is a reason to survive - not to "avoid being a disappointment.

"

You need to get in touch with why you WANT to be alive, and then do something about it. Even if the odds are bad, like mine were.



You might not survive. So get it in gear, if you want to.



I look forward to hearing YOU talk like this to someone a couple of years from now. :)


DAVE deBRONKART, known online as “e-Patient Dave,” is the leading spokesperson for the e-Patient movement–Empowered, Engaged, Equipped, Enabled. A high-tech executive and online community leader for many years, he was diagnosed in 2007 with Stage IV kidney cancer, with median survival 24 weeks. He used the internet every way possible to partner with his care team; today he is well. His first book on healthcare is Laugh, Sing and Eat Like a Pig.

For more information about Dave, you can find him on Twitter at @epatientDave , Facebook , his blog  and at http://www.epatientdave.com .

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