April 20, 2017

The mind.


The tears fell thick and fast. I felt confused. Defeated.

It had been a nice morning. I had woken up feeling good, feeling strong. My body ached from yesterday’s workout – and that was a great thing. Joshua was having a morning nap and I had a chance to think about work. Like an adult. I wanted to run my mum through some training content before her Diploma class that day. I had written our Business Strategy class, the newest class in our Diploma program, just a few months earlier and had always intended to teach it. But of course, that was now not possible. Helping my mum understand my intent was my chance to feel like I was contributing. I was looking forward to it.

I was sat on the floor cross-legged with my business strategy books spread around me, still in my pyjamas. I explained various templates and models and examples to my Mum. It was difficult. My brain felt like it was drunk and dehydrated and running a marathon on five minutes sleep. And then, I was hit by a moment of emptiness. Insipid quiet. Nothing. I sat, dumbfounded, trying to find a pithy way to summarise strategic competitive advantage. I couldn’t do it. It was as if my mind and my mouth were completely disconnected. I knew these ideas had to be in my head, but I had no clue how to bring them to life with words.

Now, I know many people at this point would chose to reassure me with a smile and a laugh and words to the effect of “don’t worry Nicole, I wouldn’t have a pithy statement about strategic whatever it is, either!”. But I would. I used to. That is what I do. That is who I am.

My mum will tell you that I did a better job of articulating these ideas to her first thing in the morning than anyone else ever could have. In fact, she said just that to me, as I apologised for not having the words that I usually did (thank you, Mumsy). I battled my way through. I did my best. For twenty minutes or so after our phone call, I went about with my morning, from shower to bed making to wig brushing. But a single thought was relentless in its cruel pursuit of me: “your brain is fried”.

My eyes filled with tears and I rang Tim immediately. We have made a very explicit, firm promise to each other: when things become too much, we call. This was too much. I am a communicator. I could not tolerate this degradation of me.

Chemo does strange things to the mind. Us cancer types call it chemo brain. I had read about memory loss, issues when trying to multitask and concentration problems, and I knew I needed to anticipate this. Now, to be honest, my memory is as goldfish-esque has it has ever been (Tim is the memory guy – marry a man who has it all!). But since my first introduction to chemo, my mind has struggled with the simplest of tasks. I have lost and skipped and slurred my words. I have found myself paused, perplexed, trying to understand how to type a text message or use the remote. I often need to quieten the room. I cannot tolerate the drier or kitchen fan if someone is speaking. Chemo has made my mind feel like it is operating at overload status, all of the time.

As I sobbed to my beautiful husband, my best friend, I grieved for the loss of my active mind. Will it always be like this? Tim reminded me of what was important at that moment – my rest, my recovery, my outlook – and I immediately felt better. Of course my mind will take a battering. My body is taking a battering. It is part of the process that I and we have wholeheartedly committed to. And with that tender, two minute pep-talk, I was able to recalibrate, back to my positive status quo.

Over the last four weeks, I know some of my closest friends have tested me. They have checked in, in their own way, to see if I am actually as okay as I portray. I love them for doing that. Drastic change can lay bare the simplest of truths: friendship, love, care. I will tell you what I have told them. I really am feeling good. I don’t have too many ‘down’ moments. But I do have them. I have moments of despair. Moments of jealousy. Moments of heartache and aguish and rage. Of course I do. I don’t hide them. If you catch me at a low point, you will see it.

The fascinating thing about a positive outlook is its relationship to a pessimistic one. I need to know what the valley looks and feels like in order to navigate to the mountain. I have made a firm commitment to myself and my people: we are pursuing the peaks and dodging the troughs. We are arguably innocent, perhaps naïve, but certainly ardent in our approach. We know what it takes to be positive and we are pushing that agenda every day. And that agenda starts with me. I know how much I influence the outlook of those around me. If I can find the positive, it makes it exceedingly more achievable for everyone around me. To be honest, this is true for all of us. We are all capable of making or breaking the spirits of the people we love most. There are just a few more exceptional factors in my set of circumstances.

Optimism to me is more than hope. I am more than hopeful. I am confident. I am merry. I am planning for my future and our future. But this outlook is not a fait accompli. I have to work with my mind to be this positive. Let me be clear – this is not simply a matter of “Nicole is such a happy-go-lucky gal, look at her go, bright and at ease in the face of this cancer shit”. I work on training my brain every day. It is a muscle like any other. Each time a thought enters my mind, I am forced to examine it. And sometimes, I have to send it packin’.

As I have worked with my mind, I have been struck by how much it is prepared to work with me in return.  The human body is so powerful. I am pumping my frame with poison every fortnight, and despite the intensity of these drugs, I can see immediate improvements in me when I rest and exercise. My mind is just as responsive to tender loving care.

A story from my first night in hospital will help me illustrate this point. It goes like this:

“Ok, so that is the last of it?”

“Yep, that’s it.”

“Ok, and you said 2%? That’s 2% there, and that’s all we have left?”

“Yep, just 2%, just that, and we will be all done”

“Oh, well that’s easy”, a bright smile spread across the male nurse’s face. “She will have that done in no time at all”.

He and the female nurse stood facing each other, against a nurse station. Next to them, on a clear, tidy bench, sat a single A4 piece of stark white paper. In the middle of the sheet sat a small silver thumbtack, modern and sleek, the kind that would slide into an office pin board and look calculatedly hipster.

The pin represented 2%. It was tiny. They were discussing the twitching I had endured since 4pm that afternoon, during my first chemo session. I had 2% of twitch left. In this simple, warm, 1am conversation, my nursing team quietly communicated that the trembling was all but over.

What a relief. For me.

Except, this conversation never happened. I dreamt it. My beautiful brain, keen to see me focused, positive and strong, created this most delicious little feedback loop for me. It was so incredibly vivid. And so immediately reassuring. When I woke at 1am, I was smiling, so touched by the work my own head had done to look after me. My healing is within me. Be it a pimple or a tumour, my approach will dictate my experience.

Losing some of my mental firepower to chemo has been a challenge. But we all face challenges and must find ways to work around them. I am fortunate to have found an alternate communication medium: my writing. When I write, I am in control. I can misstep and correct. Write a terribly expressed sentence and then rewrite it (this one is a candidate for rewrite right now, as a matter of fact!). Pause for a few seconds, or a few minutes if that is what I need, to think of a word and then use it. I feel satisfied when I write. More Nicole. And even though that alone may be enough for me, something extraordinary happens next: people read! All of you, you gorgeous people, read and read and read and respond. Each time you do, you help me train my mind. You deliver more and more of the positive energy I feast on daily. You contribute to the wellbeing of me and my family. And you, with me, fight this fight.

Thank you.

Nic x