Tuesday, January 11, 2011

What Not to Tweet

Every once in awhile even our favorite cancer institutions fail us.
            Most of the time those failures don't endanger us physically, but emotionally? What's a bit more anxiety for women with cancer?
            Today my frustration deals with the Call Back.  
            Not the polite "please have the doctor call me when he/she can" but the "we'll call you when we have the biopsy results" kind of call. Those calls. The kind of call you don't want to receive yet race to answer as soon as the phone rings. Right now, maybe even yesterday, when we were still naive, would be good.
            Immediately following my diagnosis I experienced a nightmarish before and after onslaught of thinking.  Images of what I was doing exactly the week prior, before cancer, danced unrestrained through my thoughts and filtered up from my dreams. Relentless unease, in other words.
            Right now I'm hoping our lives aren't bordering on another 'before and after' episode.
            Last week Steve had a core biopsy on his ear, in the area of his original melanoma. Consider this.  The original melanoma was removed and the margins were clear. Then it recurred. The recurrence was removed, and the margins were clear. He then had radiation. Following that he enrolled in an 18-month clinical trial testing a melanoma vaccine.  He is now five years away from the recurrence. As of this moment he's still five years away from that recurrence.
            But somewhere, someone had MD Anderson hasn't checked their voice mail with Steve's request for his test results. There are no snow days here. Failing to return patient calls can not be explained by the weather.  If there's one thing health care marketers could really do to improve patient satisfaction (which they ask you all the time) it would be to set up reliable patient notification systems for biopsy results. That such a simple procedure -- making a phone call to relieve someone's mind -- goes astray in larger cancer treatment centers is not just unacceptable, it's absolutely embarrassing.
            Two other points.
            From my experience I know that bad news will find you. Bad news hums through hospital systems, energizing the next days' surgical, diagnostic and treatment schedules. That's how healthcare works. Appointment books clear for bad news. The unavailable opens. Positive -- malignant -- biopsy results end up on the top of the pile. The phone rings. Negative, or the good, reports land God know's where.  While I suspect that Steve's report is benign I don't know this for a fact. And yes, if it were my test result, I probably would have started calling sooner, having surrendered anxiety for my better health some time ago.
            So right now I'm holding a tweet directed at MD Anderson, with copies to some of the key faculty leaders and public affairs managers. I understand social media, and how it can work from both a positive and negative sense. Outrage is always popular.  It wouldn't take long before the message to return Steve's call would fall in the right hands. Squeaky wheels get attention, it's true, but why let them wear down in the first place?
Thanks for listening,


Annemieke said...

Dear Jody,

Very well put! This should open eyes from people obviously not realizing they are not dealing with people with a broken toe but people who's life might be turned upside down (again) after this phonecall. They NEED to know asap. Thinking of you and Steve and hoping the answer will get to you quickly. Big hug, Annemieke

Marcia Banta said...

Oh Jody...just read this. Great points, but holding good thoughts for you and Steve.

Nicole McLean said...

I completely understand your emotions. Absolutely ridiculous that an oversight like this should ever take place. My prayers are with you and Steve. Hopefully, someone will have an epiphany before that tweet goes out. If not, get your answers and some action anyway that you can.

Nancy's Point said...

Jody, Excellent post. I did not have a good experience the day of my diagnosis. My call was not properly made or made in a timely way. I'll have to post about it sometime. I agree, how people are called with such news is something the healthcare community needs to improve upon. I hope things go well for you and Steve.

CancerCultureChronicles said...

Ah Jody this is such a nightmarish situation and it just never gets any easier. The notification of test results is such a basic fundamental piece to the cancer care puzzle, and yet, we're still getting it so wrong. My own doctor and I now have a very clear agreement. She is to call me the minute that she hears, and just tell it to me straight, good news or bad. Because I can't bear the emotional onslaught of the waiting. It's also the same reason I won't have tests done on a Friday. Not waiting over the weekend. My thoughts go out to you both and I hope you get resolution to this as soon as possible. And you should certainly feedback your experience to the hospital as well because this simply isn't good enough under any circumstances.

Amy said...

Yay! I just found your blog. Cancer bloggers unite! Keep putting it out there.

Jody said...

I thank you all for your support and prayers. How is it that simple things can not be done well?

Yet overnight I realized I made one an error in the first line of the post: it's not the institution as a whole that has failed us in this situation...but one individual. The distinction is important to make to me.

Promise to keep all of you posted.