July 22, 2017
‘Alright. Deep breath’.
So I do. I take a deep breath. In. I forget if I exhale.
I steady myself. It’s time.
I walk into the room; a room, any room. It’s the same each time. Before the eyes, before the smiles, before the embraces. Before all of that, I wonder:
‘Who is going to be the first to mention it?’.
Will it be me? With a thin-lipped smile and a small shrug?
Will it be you? With a sympathetic pout and arms held outstretched?
Or will it be neither of us? Will we just let it hang in the air? Has it been mentioned enough? Should we just get on with it?
The cancer. Part of me, yet also that intolerable dinner guest I wish I had just never invited. It gets in the way. Too loud. Jarring. Moody. A real pest. At the centre of everything. So I guess it makes sense that I find it monopolising attention in any room I walk into. Sprawled across the furniture with its belly hanging out, chewing with its mouth open. Sometimes I wish I could just tell it to piss off and let me reinstate some order to proceedings. But I can’t.
It is hanging around. For now. And its presence has created a version of me that I find, at times, to be completely unfamiliar.
Who is this Nicole, nervous to see even my closest friends? Unsure of whether today is a day I speak confidently about my new normal, or a day I well up in tears at the sight of you?
On a tough day, everything has changed and I feel this change deeply. Every plan I had – plans for coffee on a Sunday afternoon through to plans for 2.5 kids. All the plans, rewritten. On a tough day, the scope of this monumental change slaps me in the face. I can be at home doing something perfectly benign and precisely normal. The washing. Feeding the dog. Whatever. It is a simple household chore one moment, and an activity that floods me with angst and fear the next, as I wonder how long I will be around, simply doing this. Yep, even feeding the dog is difficult with cancer. Seeing you living your beautiful life is difficult, too.
On a great day, I can see clearly. I declare to anyone who is prepared to listen that cancer has changed nothing at all. And I don’t say that just because it is cute to write down. Not because it sounds kinda catchy. And not because I am setting myself up for my first bestseller (Cancer Changed Everything – and Nothing at All, by Nicole Cooper). No. Well, I mean, sure. But, no, that’s not my motivation.
It has changed nothing because my beautiful moments are just as beautiful and my tough moments are actually just as tough. It’s all relative, this life stuff. My priorities are the same. The important things are still important (Joshua, Tim, my family). My fears are still my fears (the dark, stairs, dying prematurely before I get to live a full and beautiful life). I still have infinite time and energy for the people I love and very little tolerance for ignorance, raised voices and bananas that are too yellow.
But I am never sure whether today will turn out to be tough or great. Or, like many days, it will be a swirling combination of both. I can’t anticipate whether I want to talk about it or whether I want to run away.
‘Shouldn’t I have this figured out my now?’.
I am a communicator with high expectations of myself. On a tough day I wonder why I can’t be a little more emotionally intelligent and just figure myself out. On a great day, I am kinder to myself. I am a mere four months into life with cancer. And not just any cancer, but the kind with labels like “stage IV” and “incurable” and “inoperable”. My fighting spirit and positive treatment results to date notwithstanding, these are quite significant labels. I have a stack of letters shouting these labels at me, letters from experts that I have filed haphazardly in a pink folder and tucked away in a cupboard in our living room. These letters outline every aspect of my diagnosis to date, every scan and blood result and research paper and genetic test. I have absorbed the details I need and don’t return to them often. Because they don’t matter so much now. They describe a liver and a bowel and a series of tumours and a series of scans and series of assumptions that should be made based on the information available. They don’t describe me. The experience of living as me is (thankfully) one that only I am qualified to describe. At least, that is what I think on most days.
My flip and flop from tough to great, from despair to delight, reminds me that I am a cancer amateur. Four months fresh, with eyes wide open, looking to grow. The part of the cancer experience that has become important for me has far less to do with the cancer and far more to do with navigating the human experience. The lessons I learn rarely stem from the tragedy of my diagnosis or the cruelty of our situation. I know that it’s the pits. But there is a lot more cruelty and tragedy out there that cannot be changed, no matter what. I have not only the option, but also the ability, to make a difference. I drive for outcomes, from my body and my mind. I expect results and I am getting them. I am stubborn, demanding, and at times, indignant in the face of cancer. And for me, ‘cancer’ could be exchanged for a bundle of other ailments and my response would be the same.
I have set a route to cure. I am unapologetic about that. I know where I want to be. I have my roadmap sketched out and I am thundering along. Filling in the hazy parts as I go. But there are some parts of the journey that I find damn confounding. And one of the worst of these blank spots is how to talk about it. How to mention the elephant in the room.
I can write about it. But the right way to go about the cancer conversation is no clearer to me today than it was four-months-plus-one-day ago.
So here I am, standing in that room, looking at you looking at me.
‘Who is going to mention it?’.
You’re thinking I will mention it if I want to talk about it. You’re thinking it’s probably the last thing I want to talk about. You’re thinking you know nothing about it anyway. You’re thinking the best you could offer is a lighthearted alternative to cancer talk. Who knows what you’re thinking.
I have even less of an idea what I am thinking.
And so we dance a clumsy dance together, weaving and skipping and side-stepping around a topic that is so monumental in conversational status, it could probably be the focus of all future dialogues between us, forever more.
Believe me, I feel more foolish about this than you. I should know what I am talking about here. I am the one with the knowledge. And the experience. I have sat in the waiting rooms and had this cancer news dealt out in so many formats by so many experts. I have the pink folder with all the detail. I have read and reread the books and the blogs. So if anyone should know how to have a simple conversation about a life altering diagnosis, it’s me.
But in truth, I feel just as anxious speaking to someone about their own cancer, or that of their loved ones, as I do about my own. On a tough day or a great day. I agonise over finding something relevant and meaningful to say. Or even meeting the basic requirements of appearing polite and making sense. Every sentiment I play out in my mind feels laboured, and certainly not representative of some level of personal insight.
But one blunt, beautiful conversation has offered me some fresh insight on the ‘cancer chat’, and I want to share it with you.
I was sitting with Tim and Josh in a café with some of our friends, who are also new parents. It was fairly early in my diagnosis. We were chatting about babies and sleep and food and all of the newness of being parents. I was relishing the opportunity to get some tips from someone who was plenty of nappies and bottles and bedtimes ahead of me. I was comfortable and upbeat and enjoying myself and my cancer was far from my mind. It was a charming conversation. And then it was interrupted, as one of our friends admitted that she felt foolish for not acknowledging my cancer, but simply didn’t know what to say.
It was a raw, honest, authentic and perfectly human thing to say to me. I realised that really, I didn’t know what to say either. And why should we know what to say? Why do we expect to be able to carry around a perfectly articulated well-wish, ready to roll out at a moment’s notice? How can we possibly empathise with the complexity of someone else’s situation? Like, actually, really, empathise? I have a pink folder full of detail and can’t keep my own head straight. You don’t know what I am going through. And that’s ok. I don’t know what you are going through either. But we can talk about it. We can learn from each other. We can get real about it.
‘My thoughts are with you’.
It’s a warm sentiment. I have used it often when trying to convey to someone that I have been thinking about them and care about them but lack the capacity to change their circumstances for the better. I really meant well. And as a statement, it was true. But I have ditched it lately. Instead, inspired by this confident, gorgeous human who just told me what she thought, I have been attempting to do the same. I have put my fears and questions and hesitations out there. I try to take opportunities to interrupt charming conversations with a dose of colourful, credible straight talk.
Sitting in that café, I felt a tension release – a tension I didn’t know I was holding. The relief, to have someone share their confusion with me. To admit to feeling foolish about it. To acknowledge the grey, the great and the tough. There was not a hint of social nicety or acceptability or pleasantness about it – yet, it is the most significant conversation about cancer I have had.
And so now to me, in this room, talking to you.
(But first let me acknowledge that this is me, talking to you. I cannot speak for how much or little somebody else wants to speak about cancer, their own or someone else’s. And I guess that‘s the point, really…).
Some days, my emotions are so charged that the thought of speaking about anything remotely close to cancer brings tears to my eyes. That happened just today in a dress shop. And yesterday, in a book shop. Others days I wish desperately to just get on with work or being a mum or making dinner for my husband and will shut down cancer chat swiftly. And there are certainly days that I go hunting for someone to be my study buddy as we dissect every component of the cancer experience.
I know that a conversation about cancer will probably be helpful to you and me. But I don’t know how to raise it with you without sounding self-centred. I don’t know how to explain it without alienating you. And I worry about how to share the detail without sharing the despair.
But the thing I want you to know most is how much it means to me that you are in this room with me. That we are gathered together to love and laugh and talk, on a tough day or a great day. That’s still the most important stuff. With or without cancer.
The caution I feel when I enter the room remains. Because the elephant remains. And we can talk about that. In fact, we should talk about that.