Taxol, not Taxidermy!

Embracing ‘Slow’

All aboard the chemo go-slow train! It’s one of the most frustrating (but comical, apparently) side effects – chemo brain fog. I was told at the beginning of treatment that my ability to think, multi-task, focus on details, remember stuff, was basically going to be on the ‘wish list’ for a while. That instead, chemo causes the brain to malfunction a tad. My panicked face was because I surely need to do all those things for a living!

But these days, I ‘wear’ a banana, rather than ‘eat’ one. I write my birth date on consent forms, rather than today’s date. I announce that I’m at the chemo clinic for taxidermy, rather than taxol (the name of the drug)… that one had the nurses in stitches.

I’m now embracing it like everything else about chemo – a chemically-imposed trial of SLOW. There are books written about it and workshops and experts teaching us how to de-clutter our lives and, by extension, our heads. It’s about moving slowly, eating slowly, breathing slowly, and thinking slowly so that we all have more time to reflect and ponder and immerse ourselves in the present.

While it is a confronting thing to be shooting blanks at the most basic of conversational times, I am trying to see it also as a way of my brain (and body) taking some well-earned long service leave from what has otherwise been more than 20 years of frantic busyness where my brain didn’t know how to switch off and just ‘be’. I sometimes wonder whether it was an inconvenient truth to not want to do it either.

Becoming disconnected from the world of emails and meetings and ‘busy’ has made me start to ponder how, in a world of instant connection (with devices), that we are so disconnected (with people).

In among the many not-so-great things with this year of diagnosis and treatment, I have been gifted with Time. It can feel like pure self-indulgence. I then question whether I should be doing something more constructive like solving world hunger than going for a walk to my local coffee shop and talking to random people. But selfishness is not a dirty word for me anymore. It’s instead another word for self-preservation.

When I see someone now getting lost in the excitement of their phone’s notifications, I want to scream “Just look up!” You never know who or what you might see right in front of your face. There’s sunlight. Trees. Birds. A big blue sky. Oh, and those unknown scary creatures called people. If you’re lucky, you’ll have a moment of connection with something that doesn’t require a battery recharge. 

I see it with kids too, where ‘fun’ becomes the conjoined twin to smart TVs, playstations, and wifi. What about a 5 minute walk to the beach. The wildnerness. The wonderment. The “why” of life. 

So I’m going to enjoy riding the go-slow train. In fact, I’m not sure I’ll ever get off it. It’s time to welcome some empty space into my head so that I can make more room for new stuff, new friends, new experiences, new dreams, new perspective. And ultimately, a new life.

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Beyond the art of bald head maintenance.

Embracing the opportunity to start again  

Who knew the words: “Can adults get cradle cap?” would ever leave my lips.

Who knew there was such a thing in Google’s search results as ‘bald head maintenance’!? Apparently my chemo-inspired nudie noggin’ requires the same love and attention to that of a new born baby.

But dealing with the fallout (pardon the pun) of chemotherapy has raised a few questions that go far beyond an absence of hair.  

Cancer, despite being a life-threatening illness, seems to strip us back to the day we were born – when we came into this world free of self-imposed limitations or others’ expectations (or hair). It's now both liberating and yet bordering on debilitating to feel the freedom of a new beginning… Maybe that’s why we are born screaming – overwhelmed with the power of breathing in life, but also the fear of what and who we may become. Or not become.

Who are we when we stand naked, alone, no hair, no labels, no presumptions, and no clue about what happens next?  

Losing one’s hair brings with it a physical confrontation, because it’s a critical part of our exo-skeleton; our body armour. It’s how we identify ourselves, and how others, unintentionally or otherwise, place a value on us.  Not many would seek an opportunity in our adult lives to rip off the suit of armour we spend years building and reinforcing. But without one, I’m asking the question now, to what end did I fight so furiously to uphold mine over all these years? To protect myself on the inside from hurt, pain, failure, or fear? To give out some external representation of status or success; confidence or identity? Underneath the clothes and hair, regardless of the brand names and colour/style, we’re all the same.  We think and act in ways that try to protect our hearts from feeling anything but rejected, unwanted, unloved, or alone in this world.

And that brings me to the other question, which is almost a spiritual confrontation. There’s an honesty that comes with being stripped bare. It’s an unapologetic honesty because the body armour has been removed completely, and what’s left underneath is, by nature, vulnerable and raw and unprotected. And yet this is probably the strongest version of myself I’ve ever known.  

Why then, without cancer or chemo or complete hair loss, and with access to a full suit of body armour, did I used to find it so hard to be unapologetically honest with the simplest of truths: You hurt me. I’m scared. I think I love you. I need your hand. 

I will need to rebuild some kind of exo-skeleton again, because I won’t be existing in this cancer treatment bubble forever. But I will make sure that it does not have electrified razor wire this time, or an emergency eject button if I’m having a bad hair day. I now trust that my greatest strengths remain on the inside; borne from vulnerability and a voice that speaks my truths.

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Welcome Poss.

Wearing self-confidence

My new best friend is Poss. Short for Possum (aka Roadkill).  It’s because she resembles a piece of roadkill attached to a head band … Enter stage left, the fake fringe. She is by far the best $30 I have ever spent. Versatile little bugger – front, back, even doubles as an Adam/Eve fig leaf if you really need a giggle!

Despite my best attempts at embracing all that chemo brings, including a bigger bank balance (no hair care bills for the next two years!), I still look like a chemo patient.  And I still feel self-conscious at times that there’s just no way of hiding that bald section near my ears or covering my massive forehead that was once the background to a flick-over fringe.  

People who don’t otherwise know me have actually commented on my cool hat/scarf/Frenchie chic look (that would be Poss+ when she's out in combo with my ‘couture bamboo soft cap’). I smile and thank them... if ONLY they knew what lies beneath…  

But other than fluffing out my head wear and my self-confidence, Poss brings a big lesson: that even the smallest of gestures can counter the greatest of grief.

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Surrender builds resilience.

Looking after yourself above anyone else

I hate the word resilience. It’s everywhere now – kids need it, adults need it, we apparently need it at work, home, the gym, even the garden plants need it!

There’s an expectation that you can do a course on resiliency and then “HEY PRESTO” you’re a resilient creature ready to face battle.

For me, resiliency is a factor of who we are at the core of our being that says you can do more when you least want to, and when others least expect you to. Testing my resiliency for me has felt like being slammed in the guts with a railway sleeper - doubled over in pain, barely able to breath, and then a car runs into the back of me and takes my legs out. And while I’m lying on the ground in the fetal position, a bird flies past and shits on my head (that has happened by the way – the bird part).

The end part, the ‘results-driven’ part of the resiliency test is whether I can, and want to, get up. Or whether I instead choose to lie there until someone picks me up and carries me to the nearest doctor. Ultimately it comes down to choice. It’s not something that can be taught because it depends on who and what and when. Some people don’t want to get up unassisted because it takes more resolve, strength, and belief than they have in them at that given point in time. And that’s ok. There are times when I have battled within my own mind about whether I need a crane to pick up my zombie-fied existence and dump me back in the fetal position in the comfort of my own bed. And trust me, I have been there. Not within this cancer diagnosis, but a time not so long ago that serves as a constant reminder that at one point in my life, I gave in. Because I needed to.

There is something powerful about surrender. It’s about accepting that sometimes stuff feels a bit bigger than just you. While I would have got an A for Acceptance, the resiliency test score would have come up with a big fat F for Fail. But yet I see it as one of my greatest accomplishments. The fact that I did collapse, I allowed myself to stay down for the count when the TKO was declared, and at some point when I felt I could trust my body to lift my limbs, and my belief in my gut that I could move my legs forward, I got up.  It’s a critical part of my story and how I ended up where I am right now. My ability now is to take all that has come my way and wrap it up in a pledge to find where this path may lead, because I clearly didn’t get the message from my previous time in Life’s boxing ring.

What I did learn was that resiliency comes from within. From experience. From belief. And ultimately from the choice we make on a particular day. My choice for today is to get up.  My choice for tomorrow is to believe that I can and will get up. And if I can’t, my choice is to nurture and trust that my body is getting exactly what it needs… rest. So that the next day, I can start again. 

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A serve of self-love (with a side of coffee).

Support can come from the most surprising places

Self-love lessons can appear at any time, assuming we’re open to it. For me, a stand out was the day that my beloved local barista, Michael, invited me around to the other side of the coffee counter to do a baldie selfie (me, newly follicly-challenged; Mike, a result of the natural course of men aging gracefully!). I had not ventured outside once with my new chemo-do. And other than the occasional hot flush/fever at home, I rarely walked around with my noggin doing a nudie run. But this day, I was embraced by compassion and comfort as I stood for an iphone selfie pic that was surely in need of its built in ‘best portrait’ option!  

I didn’t know if I was going to laugh or cry when I saw my reflection in the camera lens. But the beaming smile to my right told me that crying was NOT my story today. All I felt instead was proud. Proud that I could stand in public and be accepted. Proud that perhaps one person who may see Mike’s social media post might just be one little bit less self-conscious about their own reflection. That they may borrow some of my self-love in that moment and help celebrate that I conquered that moment on that day; that I chose that moment to be happy. And that a good guy (a bloody awesome guy!) helped me believe that I was going to be ok.

Here's Michael and Me @ Walt's Espresso Bar, Hamilton, Brisbane.  

Chemo: Friend, not Foe.

Embracing the fear of chemotherapy

Last time I checked, the number 1 fear for most people was public speaking, but I would make a calculated guess that number 2 would be chemotherapy. I can only relate it to the fear of the dark I had as a kid – I didn’t know what monsters might be lurking under my bed or around a dark corner. And until I could muster the courage to turn a light on, my childhood mind continued to be convinced that whatever may be waiting for me was intending to do me harm.

Chemo had the same effect on my adult mind leading up to my first round.  In my working life, I had mastered the art of treading water in a sea of information-overload with data analysis, projections, and evidence-based recommendations. Following my cancer diagnosis, I tried to do the same thing. From reading all the information booklets about chemotherapy, talking to medical staff, taking a ‘sensible’ approach with the Google search button, to listening to other people who had been through chemo, or knew someone who had been through chemo. And yet at the end, I was left scrambling around unable to find a light switch in the dark scary world of The Unknown.  The only fact I knew was that my hair would eventually fall out. Everything else was as scientific as guessing how many jelly beans were in a jar. 

The most comforting reflection I received from a dear friend was that the fear of what might happen is nothing compared to what actually does happen.  Our brains, after all, are hard-wired to fill in missing pieces of a story. They love to speculate, to imagine as many possible scenarios as we give space for, and to ultimately allow our deepest fears to wreak havoc during what otherwise feels like a car crash in slow motion.  So, I decided to make good use of all the information and stories I had collected and created a chemo shopping list (otherwise known as my ‘just in case’ list). I added everything from black nail polish and a chair for the shower through to a wig and cold press juicer. 

It was while I was methodically cleaning out my bathroom cupboard the day before my first treatment that my newly-claimed stoicism began unraveling. Strangely enough, it wasn’t the light-hearted jokes about not needing hair styling products for the next two years. Rather, it was finding the salt and bicarb soda purchases from my chemo shopping spree and realising I had no idea what the answer was to a seemingly innocuous question: whether to start mouth rinses that first night, or just wait and see if I developed mouth ulcers. And so I sat on the bathroom floor and cried.  

It was a timely reminder that regardless of how much planning and preparation I had done to that point, I still didn’t have the answers. All I could do was choose to be ok with ‘just in case’.  I didn’t know how many of the 20+ potential side-effects I would experience or to what degree. But then I found a packet of an old antibiotics script and saw that those too had a list of 20+ potential side effects, some similar to chemo, and yet I never thought twice about taking them because I viewed those drugs as medicine. 

And there it was – the one resounding fact in all of this: whether I thought I would get through it, or not get through it, both scenarios were right. It came down to how I viewed my chemo treatment: as a friend or a foe. I chose friend. I embraced it as a much-needed respite from being stuck inside a hamster wheel since diagnosis – the futile frantic pace of running in one spot not going anywhere. That’s how it feels. The five surgeries/procedures in six weeks, follow ups with surgeons, oncologists, radiation oncologists, physiotherapists, exercise physiologists, CT scans, bone scans, colonoscopies, pap smears, dental chairs. And still no god damn apple pie on the hospital dinner menu! Chemo was now about slowing down, catching my breath, and trying to process all that had happened.

Despite pulling myself back together the night before, I woke up with what I could only imagine would be similar feelings for someone walking a tight-rope between two skyscrapers. Completely pumped up with confidence from all the preparation and planning, but yet breathless with self-doubt about whether I tied the ends of the rope correctly.  All the sanity and comfort of the chemo shopping spree had flown out of my mental window while I was driving to the hospital.

Walking into the waiting area of the chemo clinic, I imagined putting on a new pair of glasses. I looked around and saw faces of support from a community that I didn’t even need to meet, rather than those of other cancer patients. I saw smiles on the faces of each nurse invested in my care, rather than those of clinical staff in a hospital just doing their job. I saw bags of medicine hanging from an IV stand intending to save my life, rather than toxic drugs intending to cause me harm. So the casual conversation with the nurses, the reciprocated smile on my face, the tea and biccies trolley, the quiet time to read and refocus my thoughts, making jokes about red cordial in the IV drip, all became part of a silent dialogue on repeat: I am ok. I will be ok.   

A few hours after coming home, I felt anything BUT ok. I was wired. In fact, I was contemplating a stand-up comedy career.  All I could feel was a bang bang bang inside my head. Jumbled garbage coming out of my mouth. Twitches and ticks from my hands. Talking 200 km/hr.  It was like going to bed with a ticking time bomb. But it wasn’t the chemo – it was the steroids.

To get to sleep that night, it took 10 deep breaths. And a sedative. I put my hand to my chest and heard my heart beating again. It was a reminder to change the dialogue: There is life saving medication flowing through my veins, not poison. I repeated two words in my head to the sound of every heart beat: In. Out. This was not the time to check out of The Unknown and roll over into Freak-out World.  And I learned a valuable lesson – take the sedatives early on treatment night and go to bed!

In the end, I embraced the dark. I chose to trust that my feet would continue to move one foot in front of the other, that my outstretched arms would prevent me from face-planting into a wall (or a monster), and that whatever may be out there around the corner could just as easily sit with me rather than chase after me.   

I've included more about how I prepared for chemo and have managed my treatment in my learnings page, Planning for 'just in case'.  

A version of this blog also appears on patient blogs for Icon Cancer Centre and Starts at 60.

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Heart sounds.

My first day of chemotherapy

I heard my heart today. Loud. Strong. A statement that this is where the leadership role is forming to carry my body through the next 9 months of treatment.   

My mind...usually the form of concrete, no cracks, just rock solid foundation for whatever chaos may ensue. But today, resembling more like the sand to mix the concrete. Panicked about where things were, what bag, what I'd thought I'd packed but clearly left in another bag within a bag. Frantic pulses disguising fear. Chunks of confidence and composure mixed in with moments of inner madness. Silently crying into the wall during the heart ultrasound. Staring at the edges of two holes in the wall. Tracing the outline with my mind, wondering what it would be like to crawl up inside one of them and feel nothing for once.

Then feeling everything walking into the chemo ward.

Disbelief and relief at once. Grieving for all the people next to me dying of the same disease. And yet guilt-filled gratitude that I wasn't one of them; at how truly random cancer can be; at how truly random life can be. 

Life. This had to be about letting go of the one I had, metaphorically thank God. How else can I honour those who do not get this second chance. The mothers, like the one I met today, who have to bury their children. The people who don’t get the early warning signs.

And there it was again. My heart. Beating. A little faster, yes, and feeling a little bit like it was sitting in my throat. But it was charging that medication with full force around my body. It was fighting for me and whatever was waiting for me. 

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We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us.

- Joseph Campbell