Clear as a bell, like our wedding day or where we were when 9/11 unfolded, we Cancerchicks can recite verbatim how we were told we had cancer. We can tell you who was with us, where we stood, what we had on, and how many times the phone rang before we reluctantly picked up. We can describe to a T the rock we felt in the pit of our stomach when we saw who was on the caller ID, and we can tell you how many times we threw up just after we hung up the phone. We can replay those moments up to the diagnosis like a story we have read a thousand times over and know by heart. We can tell you what happened in the moments after, when the room began to spin and we put our head between our legs; the moments when life changed forever.
Those first words stay with us forever. Those first words, how cancer is framed for us when we are told our diagnosis chart our course and create our big picture. Those first words are so very important.
Here is what I wish. I wish all doctors could understand how that one moment in time will have a profound effect on us for the rest of our lives; forever a tattoo on our psyche.
What astounds me as I listen to the stories of friends and celebrities is the vast range of both skill and compassion shown by those in the role of being bearer of bad news. Some women had a gentle soul share the bad news with them in a very moving way, hugging them, and taking time and creating the best place to start the journey. And some did not even experience the courtesy of a doctor calling, instead having a nurse or other office person leaving a voicemail on their home phone.
Now before you go flapping your hands all around and calling foul saying, “No fair Lauren, you are shooting the messenger!” hear me out. In Lauren’s world, I think it should be a rule that if you pick a career where you are charged with being the cancer messenger quite frequently, and you get paid great sums of money to be the messenger, you ought to have least attended one seminar entitled, “How to Tell Someone They Have Cancer in a Kind and Compassionate Manner.” Just sayin’.
In my case, I found out from my surgeon on December 12, 2005. I say “my surgeon” like we were pals, as if I had used him before for other surgeries here and there, and we frequently had beers together, but to tell you the truth I don’t know how I even wound up with this guy. All I remember is that in the early days of, “What is that lump? Uh oh, I guess we better find out pronto,” someone pointed me in his direction for the surgical biopsy saying that he had “good hands.” Granted he did do a spiffy and MRSA free cut and sew job, and in hindsight I do realize that he made a very wise decision to leave the tumor put, but those things did NOT make up for his bedside manner.
Essentially, it was like a computer generated recording calling me up and saying, “This is Dr. So and So. Unfortunately, you have breast cancer.” Yeah, that’s unfortunate alright.
But it was what happened after the unfortunate cancer part that sunk his approach below the Mendoza line. With brutal boorishness and sans a complete path report mind you, he launched into a monotone dirge detailing how given the tumor size, I should “expect lymph node involvement and chemo and mastectomy as part of the plan,” and, here is the oncologist we recommend and have already made you an appointment with tomorrow, and, radioactive isotopes will be used, and, Lauren go ahead and say goodbye to your children and eat all the Christmas cookies you want this year cause it will be your last.
Okay, I made the last two parts up in my head, but that is what it sounded like to me.
Honest, I would have been good with the “unfortunate” part; just stop there and call it a day without all the devastating bells and whistles tagged on. After his little monologue O’Gloom and Doom, he hung up. That was it. Really. I took this call on the steps of a Jersey Mikes Sub shop, as I did not want to miss it when I saw it was him on caller ID. And would you like a pickle and chips with that Stage Two cancer ma’am? Are you sure you want it to go, as it seems you might die before you get home to eat it.
A few weeks ago I read this flyer for a workshop that made me giggle. It said, “Avoid disappointment, register early!” Oh, if only avoiding disappointment was that easy! Perhaps I could have avoided disappointment by not answering the phone. Perhaps I could have avoided disappointment by picking a different surgeon. Perhaps I could have avoided disappointment by eating a few thousand less Goetze caramels as a kid and smoking a few less cigs as a teen.
Okay, okay, I suppose there is no nice way to say, “You have cancer,” but still, I needed more of a warm fuzzy than what Dr. Drone provided; a hug perhaps, maybe an intro to cancer at a later date, heck, even some gratuitous sunshine blown up my behind would have been welcomed. Not a fire hose gush of information, spraying me with death. I would have liked for it to be more like the intro Melissa Etheridge got where she describes in an interview how she found out she had cancer. Her radiologist a woman, was actually doing the ultrasound on her breast and was the one to tell her. She recalls how the doctor said, “Yes it is cancer, but no matter what, you are going to be okay,” and shared how she was as survivor as Melissa would be. Melissa said, “What a great way to start this journey her words were; how perfectly that set the tone for what was to come.”
Indeed, Melissa started her cancer trip on No Matter What You Will Be Okay Boulevard whereas I on the other hand, was shoved onto Expect Lymph Node Involvement and Certain Death Avenue. (A wrong turn btw.)
No matter how we were told the news, I have to be honest and say I knew, (I think we all knew) it was cancer long before the phone rang, long before the surgeon walked in with crisp papers in hand carefully avoiding eye contact, long before pathology was slicing and dicing our tissue sample in a lab far away. In fact I can tell you the exact moment when I knew I was in trouble. I was on the ultrasound table fifteen minutes after a negative mammogram. The tech was looking for a cyst near my nipple that could be felt on exam but was invisible on mammogram (remember this lesson here all you dense breast girls.) Instead, she glided over and over the old “fibroid” lump,(also invisible on mammo) which had a negative needle biopsy proving it to be so in the past and said, “What’s this over here?” I assured her it was a lump that had been put to rest. But I could see on the screen how she was intensely focused on it; measuring its honking 2cm breadth carefully, little + signs being tagged all over it. It was at that moment, the instant that I looked from the screen to her face that I knew; she might as well have screamed “CANCER!”
That is how cancer finds you, when you are off guard, lured into a sense of false safety by a negative mammogram, laying on a table with cold jelly smeared on your breast, somewhere in between carpool and dinner.
Her jaw was literally hanging open, and she looked horrified. I asked what was wrong and she said “Nothing” a little too quickly as she about ran from the room. When a man in a white coat walked in announcing he was the radiologist, and said they were, “Seeing something that concerns us on the ultrasound,” I felt like saying, “No shit. Hey thanks… save your breath, I kinda figured that out when I saw the tech’s molars.”
Professionals get all hinky when it’s cancer, and we sense that as intuitive women. Tempos change, nonchalance and lightheartedness evaporate, the light shifts….it is almost like the air gets sucked out of the room. There is a barely perceptible whisper of cancer in the doctors’ eyes when they palpate that lump, just before eye contact is lost. Medical staff gets vague, they won’t give you your results over the phone saying,”Our office policy is that all patients come in for results…can you come like, TODAY,” all of which you know is a crock because they called you last month to tell you something else was negative. In a world that takes forever to get an appointment for anything, we are almost knocked over by the warp speed with which a surgical biopsy is scheduled. The rush is what tells us that the cancer alarm was sounded; but sometimes it’s the wait. Wrapped in our so clever and festive pink gowns after a breast squish, we watch woman after woman who came in after us be told things are fine and that they can leave. And we realize that what is really being said is, “All of you gals with cancer just sit tight, we are still waiting for a radiologist to be available to tell you he sees something concerning.”
We know. Long before we are told, we know.
Our first words? It is a grief process after all, so quite naturally it follows that it is shock and denial will pop out first, followed shortly thereafter by some bargaining. Usually, “Oh my God” is followed by an, “Are you sure?” That is quite natural. What I hear from a lot of Cancerchicks, myself included was that something also follows along the lines of explaining why you, as an individual cannot have cancer. After I scooped the ultrasound tech’s chin off the floor I remember saying to her, “But I’m a single parent with two small kids,” as if she had the power to go, “Oh well why the heck didn’t you say so? We didn’t realize that,” and reach in the drawer and hand me a Get Out of Cancer Free Card.
When we can think a little more clearly, we start to figure out with a slap to our forehead that well of course! Obviously there was a mix up in the lab, and our name got attached to someone else’s lab report! Those silly office people. I will say that this bull in a china store surgeon did one very clever thing as I sat in his office later that day. He was showing me the initial pathology report and on every single dog gone page, he pointed to the top corner and said, “Is that your name and date of birth, is that you and is all this correct?” I remember at the time I was like, “What the heck is that about?” But in hindsight, I suspect he learned this little technique at some conference entitled, “How To Thwart Any of The Oh There Must Be a Mistake In The Lab Report Denials from Patients with Cancer and Likely Lymph Node Involvement.” Despite this one clever trick and his good hands, I still maintain he musta snuck out early from that conference, skipping the afternoon seminar on How to Be Compassionate and Warm/Fuzzy and Positive and Not Overwhelm Patients with Chemo Facts and Premature Guesses About Lymph Node Involvement All At Once, but I digress.
Psychologically, we do better when bad news is given incrementally, so perhaps it is good, no in fact best, that we slide into the idea of a cancer diagnosis. Our brain can only process so much at one time; it’s just plain easier to drink water from a trickling garden hose than from a fire hose. We know there is a lump, then the biopsy gets our attention, then the cancer is announced. Then the other tests follow to see what kind and what it is and then we slowly get further info about what will happen chemo or not, radiation or not, mastectomy or not. There’s a whole lot of horse trading that goes on in between, “We are seeing something that concerns us” and “You are going to die.” Please remember that girls. And please remember that unlike how we are able to gorge an entire new bag of Oreos in ten minutes, your brain can only process small bits of trauma at a time, a bite at a time, a sip from the hose at a time. After five years, I still have Oreos left in the bag.
Perhaps because I had to drink from a fire hose at first, and perhaps because I am a tad bit of a control freak, I began each visit with a new doc with a speech about what I did not want to hear. I hadn’t called friends to tell them yet, not ready to listen to a blast of armchair prognosis based on their Aunt Sally and Sue. I was trying to stem the flow to a drinkable rate. I just wasn’t ready to ask the big question, “Am I going to die?” and didn’t want that answer just yet. Perhaps to allow me my false sense of control, perhaps fearing the wrath of Lauren for breaking her rule, many professionals dropped back and punted and chose to say nothing. But the tactic backfired; me being more neurotic than I knew, heard more in the silence than I did in the words.
In the silence one evening, I sat tearfully in front of the Christmas tree wondering if this would be my last. This was several weeks after the initial flurry of diagnosis and appointments were complete, and just two days before chemo was set to begin. The phone rang breaking into the quiet. It was my family physician calling, the guy who saw me for sinus infections and strep throats for the last ten years. He said he had just heard the news through a fax to his office that day, and wanted to call and check on me. He was so kind, so warm and easy. Maybe by then I was ready for another Oreo…maybe I was just so exhausted from trying to stem the flow, maybe it was his calm tone and cadence that I trusted; his milky warm words bubbling slowly from him at a pace that felt safe. I said to him, “People are telling me what I have, and how I will be treated, but no one has said they can cure me.” I guess it was as close as I could come to asking if I would die. “Oh, they will cure you alright,” he said, “You are gonna go through hell to get there, but they will cure you.” And with that, he stemmed the flow to where I could drink again.
I will never forget where I was when I heard his first words. Because just like that, in the quiet twinkle of the Christmas lights, I took a sharp left hand turn off of Death Road and onto You’re Gonna Go Through Hell to Get There but They Will Cure You Boulevard. The next day, I called a friend who had just gone through breast cancer treatment to tell her I had cancer. Her first words were a confident, “Well, you’re not gonna die.”
The right first words somehow found me, despite myself. And just like that, my silver lining was defended.
Pace yourself, you can only see as far as your headlights allow, yet somehow you finish the journey.
Find good and kind people to care for you.
No matter what, you are gonna be okay.
You’re not gonna die.
I hate to see you cry
Lying there in that position
There’s things you need to hear
So turn off your tears and listen
Pain throws your heart to the ground
Love turns the whole thing around
No, it won’t all go the way it should
But I know the heart of life is good
You know it’s nothing new
Bad news never had good timing
Then the circle of your friends
Will defend the silver lining
Pain throws your heart to the ground
Love turns the whole thing around
No, it won’t all go the way it should
But I know the heart of life is good
~John Mayer~
Those first words do indeed stay with us forever. I was lucky to have a compassionate breast surgeon and her warm & fuzzy nurse break the bad news to me, and the dr made me look her in the eyes and repeat, “This is NOT a death sentence.” It was powerful, and it worked to reassure me in a fire-hose moment that changed everything.
As always, your words resonate and your thoughts move me. I’m so grateful to have your wisdom to guide me through this mess.
thank you Nancy, be sure to tell them how much it meant, and ask them if they can give Dr. So and So a shout and let him know that’s how it should be done. You are sweet.
xo
L.
OH I can relate! Your words cut right to the heart of whatever story you are sharing. I got the call over the phone and so matter-of-factly I lost my breath. Forever seared into my brain. It took time for me to write about it (“Cancer Club Part II” on my blog) but seeing my words made it more real and helped to move me out of the denial zone.
I so agree that we need to let our doctors know when they do a compassionate job in telling us bad news…so the next woman (or man) can benefit in the same way. Look forward to your next post!
thank you for your kind words, perhaps this will be passed alone to some doctor drone somewhere 🙂 too.
Oh Lauren, this is so true and insightful. What a wonderful post.
Those words are burnt onto the soul, never to be forgotten. I was lucky to get a “this is highly suspicious of cancer” which followed (looking back) a lead up with a number of hints. Which I completely missed!! I was also lucky in that this was in the consult immediately after the very scary mammo and ultrasound with the horrible pegging of lumps on a huge screen in front of me. While not quite a fire hose, I was certainly drenched, but I do think it was handled very well. My surgeon is Thai and trained in Scotland (partly) so perhaps that is a good combination to add in 😉 Oddly I have absolutely no recollection what I said in response. Not a clue! I think we went straight on to talk about treatment/surgery. We fixed a surgery time for 3 days later.
I guess it must be hard for many to deliver the message, so I hope that there are plenty of places on your “how to be say the right words, with the right voice and not scare the patient witless, even though they will be terrified” conference 🙂
Thanks for another powerful and touching post.
P 🙂
thank you philippa for your insight; hints indeed….. It is interesting to hear how people were told, perhaps I have a future in giving lectures at conferences eh?
Glad you are well and looks like life is grand your way!
Lauren
I’ve only had one caregiver (so far) treat me harshly–a nurse who was trying to find a vein in my pin cushion–I mean, my ARM told me that if I didn’t ‘relax’, she was never going to get it in a vein. 😐 (and maaan, that stuff sticks with you–you are so right)
I got my news over the phone, as well–my surgeon was really compassionate and he did stress that it wasn’t a death sentence (which, I barely heard over the dull roar of panic in my ears)–hearing your story makes me even more grateful to the man for it.
x
SO so true Lauren – those words and everything associated with that moment is etched into our brains forever. I can still see the tie my consultant was wearing with images of a cavorting Donald Duck swimming in front of my tear-filled eyes as he said those words. I can never look at Donald Duck to this day without that memory coming back to me…yes, we never forget right down to the smallest detail…
you know, i don’t think I have ever been in Jersey Mikes again…I have completely blocked this docs name, just all of it…it’s how PTSD shows up, in being sickened by donald duck…
thanks marie
xoxox
[…] the day you heard those fateful words “you have cancer” and this is the theme that Lauren, in her own inimitable way, is writing about this […]
Hey Lauren,
This is chemobrain in all its glory. I read this and I thought I replied…. yeah, thought being the operative word here….. I’m glad Marie’s blog directed me back here. I have been reflecting upon those same things. My date was July 27. It IS something we can ALL relate to….. you capture all of the raw emotion and put me right there beside you. I still choke back tears when certain things trigger me back into that room, on that day, in that gown…… listening to THOSE words.
xoxo
Thanks AnneMarie, it is something we never forget, even with chemobrain… 🙂
Lauren,
Love this!! Thank you for your wit and humour in lightening the terror we all felt in that moment.
It feels like yesterday. I was one of the lucky ones, I guess. Although I really didn’t think I had cancer – my first biopsy came back benign and I was being intensely screened because of my BRCA gene mutation. But my oncologist who had managed my screening for 7 years had obviously gone through compassion training on how to gently tell a 30 year old, she has cells trying to kill her from the inside out.
“My dear,” she said in her grandmotherly Scottish accent, “I’m afraid to tell you, but we’ve found a “little” cancer.”
Of course I wanted to scream, “isn’t cancer still F*ing cancer, no matter how little it is.” But she wouldn’t let me get off the phone until she had answered all of my questions and promised me I would receive the most professional and best care possible.
It’s so crazy to think that three little words: “you have cancer” will be etched in the collective psyche of all of us cancer chicks forever. Thank you for sharing your story!
Terri
a little cancer, isn’t that like being a little pregnant? Thank you for telling me your story…it caught me off guard too, I had a negative biopsy several months earlier as well….but at least it gave me someone to be pissed at, I’ll say that 🙂
lauren