Years ago there was an ad for this incredibly trashy magazine, “The National Enquirer.”
It said, “Enquiring minds want to know,” and the camera would pan to an avid reader of the rag, who would look straight into the camera and says, “I want to know.”
There may very likely be times during your cancer experience that you will feel you’re surrounded by “enquring minds” who want to know–and you’re just worn out, and feel like if you have to go through the details once again you’ll just scream.
I’ve helped my clients make interventions in this area a number of times, for the need to keep concerned friends and family members abreast of the situation can come to be so fatiguing that it drains the little energy the cancer patient has.
Clearly you need a better plan than answering every phone call and reading off your latest test results, until the call waiting beeps in and you can start all over.
One patient was so frustrated she insisted she was going to hire time on a local radio show, and keep the posse abreast of her progress that way.
But let’s get down to the nitty-gritty. Assuming you haven’t cut a deal with NPR to share the gory details, how can you keep your friends, who truly are concerned about you and want to know about your healing, informed–and off your back, at the same time?
Well, if you or your spouse or closest friend have a bit of tech savvy, and the follow-through to keep data current, I might recommend using an online personal health record site. Unlike electronic medical records, in a personal health record (PHR) the data is entered by the patient herself, and it’s quite convenient to have all your infomration in one place. But more to the point, web-based PHRs like HealthVault and PatientsLikeMe let you share your data with other people. You–or someone who helps you operate this–can enter as much information as you feel like sharing–about your treatment history, your side effects, your hospitalizations, your symptoms, your mood–heck, even your weight–and then facilitate your friends’ logging on, until their enquiring minds are chock-full of information, and up with the latest in your treatment.
Ok. Let’s say you’re not a tekkie–or you don’t feel comfortable having your information on the web–or you never did understand what the Internet was.
Then there’s what I call the “Mayven-Yenta” option.
For those of you without a passing familiarity with Yiddish–I pity you. You’re missing out an a wonderfully expressive language. But I’ll let you in on two of the language’s more useful words. A mayven is technically an ‘expert,’ but often simply known as a ‘know-it-all.’ In the kindest of ways, I mean. A yenta is–and, again, this is meant in the nicest of ways–a ‘gossip’ or ‘busy-body,’ with an emphasis on excessive use of speech.
What you need to do is to pick your friend who most likes to be ‘in the know,’ and just loves talking–and she’s your point person. It’s as good as the Internet, really. You just catch her up in her role as mayven, giving her–just one person–the details–and then send her off to do her yentering, passing on news of your health and progress to all and sundry.
Then there’s my son [and I believe it’s been several posts since I’ve mentioned his professorship and publications, right? And his perfect offspring? What self-control I have.] He and his wife had a horrible first pregnancy [really, I just said that to ‘talk the talk’ of the modern day. What I really meant was that his wife had a horrible pregnancy, right? And he was miserable watching her. Not exactly the same as his having a horrible pregnancy, but let’s not get bogged down with semantics]. She had hyperemesis gravitas, which, in a word or two, is uncontrollable and unstoppable vomiting and retching–for months. They had 21 trips to the ER.
I mention this not as a feminist statement on how women suffer, but rather to share their response. People wanted to call and find out how they were doing, to come visit, to cook meals, to offer advice. And what they needed was their own space. They actually sent an e-mail–more tactful than this, but I think people got the bottom line–that the best thing friends could do for them was to pretty much leave them alone.
Now, that might have gone over okay with various friends from college, my son’s grad school students, my daughter-in-law’s co-workers–but it didn’t have a prayer of working with their two families, where minding our own business is simply not in the realm of the possible.
So my son sent out twice daily updates to family members on his wife’s condition. And that’s an option, too. Deputize a family member who really knows the score to put together a list of people–with e-mails– who need to be kept in the know, and then to send updates frequently enough so that people do feel in the know, and don’t feel cut off from you–and, just as bad–don’t feel the need to call to find out about information they think they’re missing.
Perhaps you’ve found another way to manage the plague of the ‘enquiring mind,’ and, if so, I’d love to hear about it. But if you’re finding yourself deluged with questions about your health, consider utilizing the PHR, the mayven-yenta, or the ‘don’t-call-me-I’ll-call-you’ daily e-mail updates. I think you’ll be glad you did.