Although I am not crazy about it, Ned goes everywhere I go. You know Ned, “no evidence of disease” – that Ned. Funny, my husband sort of likes him. Ned lulls him into thinking everything is all right even though all three of us know it is not true. That is the way it often is with metastatic breast cancer. After the shock of the announcement that the cancer has found its way out of your breasts, after the second onslaught of chemo, the second time your husband shaves your head and after you put on all of those stupid hats again, it almost becomes routine.
And then a few months later, your oncologist says with a bright, wide smile, “Your scans show no evidence of disease,” and everyone waits for you to jump up and shout for joy. But you know what? You don’t because unless that proverbial bus creams you on the way to the grocery store one morning, you know how this book ends.
You don’t know how many chapters are left in the book, true – but you do know who dies in the end. So Ned hops in the car with me as I go about my day and when I meet friends for dinner, one of them will invariably say, “You look so great! You really do! You simply don’t look like you have cancer!” I know she means that as a compliment but I cringe inside as Ned looks on smiling. You see, Ned is a deceiver. He knows that I am not ok, that no matter how much make-up I apply I still don’t have eyelashes. That no matter how good I look, my life is being cut short. I may have two years left, maybe. But Ned is silent – there, but always silent.
Let’s Have an Understanding
As providers, I believe we need to understand each patient as an individual and not as a cumulative diagnosis. While other women living and dying with metastatic disease may indeed crave someone to say they look great, I do not. I feel like it diminishes the disease, puts a pretty face on what I think is a horrible and ugly diagnosis. But that’s me. We, as healthcare providers, need to know the individual, and communicate with her the way in which she needs to be communicated, not in the way that makes us as caregivers more comfortable with her diagnosis.
One Size Does NOT Fit All
On one of my recent treatment days, Ned was there when a nurse told me that thanks to my reconstruction, I now had the breasts of a nineteen-year-old! I know she meant it as a compliment to offset an otherwise dreadful situation, but I wanted to smack her and Ned both. Though my breasts are indeed beautiful, my chest wall, not to mention my right arm is numb. Completely numb. My reconstruction is all for show. When I am in a foul mood, I say my breasts are useless. Ned knows this and doesn’t care.
Though I can carry on polite conversation in almost any situation, despite my disease and treatment regimen, Ned is right behind me watching. Case in point – I am a nurse but can no longer work full-time. At a hospital function a few months ago, a pharmacist who didn’t know my background asked me what I did with all my time since I didn’t work. Ned grinned. I told her without any drama – well maybe a little for effect – that when I wasn’t volunteering at a local hospital, I was getting treatment for breast cancer. “Well, you look great!” Ah, yes. I do look great.
No Place for Glib Conversation
As providers, we need to be intentional and purposeful in our conversations with our patients. We need to choose our words to fit the moment and the patient. Each one unique. And then at some point, we need to take a long look inward and get comfortable going as deep as our patients need us to go when it comes to discussions about the diagnosis, the treatment and the inevitable death that is following us at a quick pace.
Listen, Really Listen
As healthcare providers, please don’t let Ned stand in the way of you and your patient. She is very much aware of her mortality. She is very much aware of Ned lurking in the shadows and she desperately wants to talk to you. But more importantly she wants you to listen. Really listen.
Your honest post hit a chord. I am a disabled spine patient and had to resign my full time position because the work was far too sedentary for chronic spine issues. In addition, a third hyperparathyroid tumor has appeared and cannot be removed. Not even the most world renowned physician who removed the second tumor will touch it; I’m too complicated. I’ve reinvented myself and have found a measure of success. However, know ‘Ned’ very well. After 20 surgeries and illness throughout the years, I stuff my emotions into a secret hidden closet in my soul when someone tells me how wonderful I look or assure me that I appear not to have chronic pain because I’ve learned to hide Ned. Words matter, particularly from medical clinicians and other intelligent people who need to learn the art of listening rather than commenting because they’re too uncomfortable with what may lead to honest and revealing emotions from patients. Perhaps we need to ‘out’ Ned to provoke needed change.
Thank you for your insightful post. You must be a wonderful nurse, dearie!
Thank you for your kind words. I’m sorry you have had such a long and difficult road. Hopefully we can make a difference with the time we have left. Blessings, Sherri
I do not know you well,what little I know is through your Mom Jane,who I adore,and who is my friend. She and I know each other through shows that we have done together throughout the years…I had to write after she sent me your site,and your enlightening and clever and well crafted letter to all of us…for we all have been touched by disease and death..and we shall continue to be more and more as the years pass.What I bring away from as I read and reread your words is your fearlessness to look the threat of death square in the face.Thank you for your candid wit and words about what is in this society a sensitive and sometimes taboo subject,and I pray that it will be foresight for those of us who have experienced little loss,and insight for what is to come for all of us sooner or later. Janice
Thank you for taking the time to send me a note. I appreciate your comments and especially like that you think I look death square in the face! That image is great!