Yesterday I participated in a presentation and Q & A for medical students at Harvard, in which I recounted the story of Clio’s diagnosis and treatment, starting with the first symptoms she had — intermittent fevers, leg pain, belly pain — and going right through to her current treatment, and thoughts about what the future may hold.
(Last year, Alastair and I participated in the same thing in the flesh; this year I did it via Google hangout from Gloucester, where I spent the week for a DIY writing residency with a couple of friends.)
A good friend of ours, who’s a doctor, is one of the faculty members who runs the thing, and Clio’s oncologist, Lewis Silverman, was also there. And I have to say: it’s kinda trippy to be in a situation where your doctor is there, but you’re the one with the floor; you’re the one giving the case study, and the one answering the med students’ questions.
And it’s a strange thing to be talking about the emotions surrounding your child’s treatment in front of her doctor. Because when Alastair and I talk with him (and other doctors) in a clinical setting, it’s not like we bare our hearts. It’s all about symptoms and side effects and medicines and plans.
And it’s not like I bared my heart yesterday. (If they want heart-baring, they can read my blog.) But I did talk quite frankly about what it’s like to find out your kid has cancer, and what those first 72 hours are like: Shock, terror, grief…..
Still, it was odd. It actually made me realize how much more emotionally open I am with the nurses we’ve dealt with throughout our treatment than I am with the doctors. It’s a very different sort of power dynamic, and a much more intimate sort of relationship, really. The nurses are your teammates in caregiving; they’re there for the daily stuff, the details—the vitals signs and the blood draws, the monitoring and the maintenance.
I don’t mean to diminish at all the immense medical knowledge nurses have, mind you. One of the most crucial roles they play is liaison to the doctors. They’re the ones who are often the first to recognize when medical intervention or medication are needed, and they’re the ones who go get approval to make it happen. But they’re also comforters and cheerleaders and empathizers in a way that’s priceless to patients and families.
And the best doctors — if you ask me — are the ones who empathize, too. So I’m really glad I had the opportunity to give those young would-be doctors a glimpse of what it’s like to be in our shoes. It’s so important for them to know as they go forward.
They asked some great questions, too. Along the lines of:
– What was it like going from a smaller hospital to a big one?
– Were there things about different doctors’ communication styles that you did or didn’t like?
– How did you process the facts about prognosis, and how did you feel about how different doctors you talked with handled that?
– Was there anything any doctors did that made you feel particularly comfortable or welcomed? (This was a hard one to answer because the lion’s share of that feeling came via nurses.)
– How did you talk with Clio about her illness, and did it change as you went along? And were there any doctors who said things in front of her that you wish they hadn’t?
I think I gave some helpful answers. Though I hope I didn’t traumatize or bewilder these earnest and impressionable young people with how flippant at times I was about the whole thing. I made a lot of jokes. And swore a lot. (Jane! The Potty-mouthed Cancer Mom! Live, on Google!)
My parting comment was this: When parents tell you they’re concerned about something, and it’s something that’s not a big deal, don’t start out by telling them it’s not a big deal. Start out by saying they can understand the concern. Because what’s motivating it is the fact that the parents are simply scared to death.
I’m not sure I could have grasped that myself before I had kids (and I assume the grand majority of med students don’t). It’s hard to imagine that kind of primal, all-encompassing fear before you’re a parent yourself. But I’m glad I told them anyway.
What would you tell a room full of future doctors if you had the opportunity?