My initial consultation is with Medical Oncologist, Dr Radnor. I go in with the intention of laying the foundations for an on-going collaborative relationship, so that I can hear their findings and talk over the options open to me.
She bounces into the room — think, Tigger — opening with, “I’ve been enjoying myself up here in the North. We went to the music festival last weekend, did you go? It was great!”.
I’m sure she’s trying to break the ice, create connection and ease my fears before launching into what must be a horribly stressful task, but I am tense and scared and images of her partying till dawn with wild tousled hair kinda clash with my need to trust her as a consummate expert. I don’t have the heart to say, “Well actually I’m the President of that Arts Organization, but I couldn’t go because I was too busy driving myself to MRI’s and bone scans.” That feels a little hostile and ungrateful, so I button my lip and try to make the right noises, feeling the need to endear myself to her.
She is handing me a large booklet on Living Wills. I kid you not; the first thing she covers! Should I be reading something into this? Is she signalling that this is truly, really bad? I’m trying to find words to engage with what’s coming at me, but without skipping a beat she launches into the Cancer Treatment Protocol prescribed for me:
It’s the all caps, BRAJACTTG Protocol. Catchy, hey? I’m sure it means something to a trained professional but to me it means nothing and I start to not feel included in what is happening in this room.
“We’ll begin with chemotherapy: Adriamycin, Doxyrubicin, Paclitaxel and Trastuzumab. A dense dose every 3 weeks for 4 cycles, then a different dense dose every 2 weeks for 4 cycles, then Trastuzumab continues every 2 weeks for a further 13 doses.”
“What??!”, I think as she rushes on, seemingly getting faster and faster. My brain can’t quite compute, but it seems this is not going to be over before Christmas and our long-awaited family trip to Hawaii. “The chemotherapy will be to get anything that has potentially gone systemic - because we suspect it’s in your lymph nodes, although the biopsies came back negative, probably a geographical miss…”
But there are lumps as big as hazelnuts now. Surely they couldn’t have missed those? Is it a wise assumption that they are cancerous? What if they are just reactive glands, appropriately dealing with something foreign in the breast tissue? But I don’t have time to ask…
“So systemic treatment first, then a double mastectomy with lymph clearance on the right and sentinel node removal on the left, to remove the tumours that are there and to check for others. Then radiation, probably just on the right side, because of the lymph involvement and then we can start hormone treatment, because of the ER/PR positive nature of your cancer, although the tests were equivocal on one side, so we will send them off for Fischer testing. So…” and I notice her taking a breath at last, “let’s get you up here so I can measure the diameter of the tumours for a baseline, so we will be able to tell how they are responding to the chemotherapy. Does that all sound okay to you?”
Out of the corner of my eye I notice that Roland’s pen is still hovering at the top of the first page of our notebook after the phrase that he wrote in the waiting room, “And so it begins”. It is impossible to annotate this information. We are both frozen in time in this cramped, sweaty space. Everything inside me is fighting to flee but I’m holding my breath and holding it together.
Does this all sound okay to me?! How could any of this possibly sound okay to me? I robotically stand up to comply with the need to perform her examination of my breasts.
But first, the last dehumanizing piece of this puzzle…A hospital gown!
And could they make them any more difficult to decipher? Three arm holes. Two sets of ties. I can’t tell Front from Back, Inside-out from Right-way-round… I lose every last morsel of composure as I sweatily tussle with this shapeless nylon garment and try to arrange it around my body with some vague semblance of personal style. I am just in time for her return, and then she unties it and exposes me anyway!
I choose to dispense with the gown for the rest of my consults, and I wear a simple, loose camisole whose straps I can lower to give them access to my breasts while I keep some sense of self intact. I catch some doctors looking awkward. Maybe I look un-clinical, too much like a woman undressing; a reminder that I am more than just a body with symptoms to combat. How unnerving! I suppose the gowns are more for them than for me.
After the examination and her note-taking, I’m no longer processing any information. She is clearly moving her lips and making noise, but I feel like I am underwater unable to hear her above telling me how to swim, oblivious to how I am slowly sinking, trying to find some solid foothold from which to push back up; something that makes sense.
She asks me if I have any questions. Well, I did. But now my brain is fried, my palms are sweaty and my shoulders are screamingly tense. I can’t seem to gather my thoughts. I am already bamboozled by her conviction, her protocol and the assumptions of the system. This isn’t what I thought it was going to be.
“Oh, I know! By now you probably can’t process a word I’m saying!” kindly smile, “That’s a lot to take in!” At which I’m thinking; then why schedule the initial consultation for over an hour?! Could you not chunk it? With time for snacks maybe? A little light music? A foot massage?…”But it’s all here in this print-out, and we have your first chemo booked in five days’ time so we can get started and cure this for you!”
My inner cynic snarls at this one; Really? Is she allowed to say that? Aren’t we all told there isn’t a cure for breast cancer? I wonder who she’s trying to reassure here.
“If you have any medical concerns, here’s the nurse line you can call, Monday to Friday.”
Just as an aside, may I offer a little advice should the need arise: avoid chemotherapy bookings on a Thursday, because by the time it really kicks in and your system is struggling to know which way is up, it’s the weekend. And apparently there’s no budget for cancer on the weekends. Snarl.
“I’m now leaving back to Vancouver.”, she blithely continues. “You were my last patient here,” head tilt, smiling as if this is touching information, “but you will have a GP Oncologist assigned to you.”
I am now hearing a rushing sound inside my head. My heartbeat under my ribs reminds me I’m still upright, but barely. This woman, to whose professional expertise I am entrusting my life, is leaving. She is not going to be here alongside to get to know me, check how I’m progressing, help make decisions. She is recommending a whole year of cancer treatment which will stop my life in its tracks and can just walk away and leave me to it.
I struggle to dress and leave. Still underwater.
-::-
I do hear one last time from Dr Radnor. I’m on the couch at home trying to nap, when she calls.
“I’m pleased to say the Chief Oncologist has approved my choice of Protocol”, I sense a tone of pride, “but given that you are young and healthy, he has recommended the first four doses to be every two weeks rather than every three.”
Young and healthy? I am over 50 and have advanced breast cancer. I’m not a marathon running, mutation-free 20-year old! Okay, I’ll take the compliment, but
“Can I ask, am I detecting a sense of urgency in this change?”
I’m clutching at straws, here. I’ve been given no straight answer as to what the prognosis is. Generally I am encouraged by responses like, “Every individual is different. You’re not a statistic.” But that does leave me trying to decipher every clue. So, is this urgent?
“Oh, it’s just doctor preference.”
Oh really! And what colour paint does doctor like on the walls of the office, I wonder? Just doctor preference. How nice. How random. Is that seriously all she can say?
I never get to consult with Dr Radnor, again, although her name remains on the top of all my orders, but I’m told she’s taking time off when I try to seek a Medical Oncologist during my treatment. To be honest I wonder if it’s stress leave. She seemed pretty wound up.
So my quest continues for some care and connection; recognition for being an intelligent woman who, yes, admittedly has some control issues, but you try being offered death on a plate and see whether some kind of survival tactic kicks-in.
Great writing Emma. I’m sure I’m not the only reader feeling grateful to you for finding the words and for sharing. Thank you.