Three-headed goats.

Listening to our own song lyrics

There I was, banging out the lyrics to one of Australia’s iconic songs, ‘Cheap Wine’ by Jimmy Barnes, alongside some friends one night. For those of you unfamiliar with it, it goes something like “Cheap wine and a three da-aayy growth”. But I stopped half way through the chorus when I heard my friends’ pants-wetting laughter at MY version of the lyrics that instead went: “Cheap wine and a three-headed goat”.

Ok, ok, laugh if you must. I have to admit, in between the heckling, I was also close to falling over in the street, with tears streaming down my face, at what is clearly a ludicrous version of a song lyric. But it was one that I had been repeating for at least 15-20 years in countless bars and pubs (I mean, who can honestly understand what Barnesy is screeching about at the best of times!?).

Then there came Sade’s “Smooth Operator”, or as I have historically preferred to sing, “Oooh Carburetor” (as in a car engine. Yes. I think I have paid unnecessary homage to my inner rev-head over the years. And may need my hearing checked).

We all hear accurately because it's coming from our own ears. We think we are hearing the right words as they are spoken... But then someone points out there are different words. So we listen again... And sure enough, when I listen to that Jimmy Barnes song now, I can clearly hear those OTHER (accurate) words, not my previous long-standing (very funny but very inaccurate) version.

An extension of this is hearing what others say, or what we say to ourselves. We hear what we want to; what we believe to be true. But we must always be prepared to be told there's another version of truth. There's another perspective. Sometimes we just need someone else to offer up new words and convince us to lean in and listen a little harder.

There are always going to messages we hear that say: ‘I’m not good enough. I’m not worthy. I can't’. The song is playing, and the lyrics (so we think) are clear and accurate. But if we take another listen, and adjust the tone, we might just instead start to hear: ‘I deserve it. I am worthy. I can’.

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Post-traumatic treatment disorder.

Dealing with delayed grief

I had a follow-up appointment with my surgeon recently, and it felt like I was approaching this huge milestone in ‘the year that was’. It had been about 8 months since my surgeries, and I turned up, having nearly finished my cancer treatment regime, feeling on the verge of heroic. But sitting in the waiting room, I was confronted by six women, one after the other, standing at the counter booking in their pre-admission clinics and surgeries. I was like seeing myself six times over, walking in and out of a revolving door. Each of them wearing their own stage of shock on their faces; their bodies covered in the C-bomb [cancer] residue.

It was like I was experiencing it all fully for the first time again, on repeat. That day when I was standing at that same counter mechanically going through the motions of writing down my own pre-admission times and tests and follow up appointments. I don’t remember crying that day, although I’m sure I did. Many times. But I cried instead when I got to my car after leaving the doctor’s clinic. I grieved for each of those women, and I extended my heart to each of their families standing by their side, witnessing their loved one’s life forever changing before their eyes.

It’s the start of a long meandering grieving process, regardless of the diagnosis and prognosis. And by the end, it will become an acknowledgement that there are certain things that will never, and should never, be the same.

Like the way we overly complicate what happiness means.

Like the way we love, without the protections of our armour, that allows us to suffocate in the embrace of hope and joy.

Like the way we take for granted the smell of frangipani flowers. Or fresh coffee. Or babies. Or an open fire. Or rain.

Like the way we grant permission to change our choices, decisions, purpose, perspectives, that honours our self and others.

It sometimes feels like I’m carrying a new burden of hope and possibilities – that I’ve been gifted a second chance in Life’s Lottery. When I think about the beautiful souls of people that I’ve met this year that are instead planning their funerals rather than a New York holiday, I stop to catch my breath. It’s a funny expression, ‘catching one’s breath’, but it’s the most obvious reason to exercise gratitude. It’s almost like a perverse survivor’s guilt syndrome because I’m taking on a renewed responsibility to live my best life, and in doing so, am living for those that will never get the privilege.

My ultimate promise to myself and others is now to embrace change and uncertainty; to embrace the courage to be imperfect and vulnerable; and to embrace a new me.

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More than just eyebrows.

Love in small gestures

Let’s be honest - there is something about a face that just looks bloody weird without eyebrows. Women lead the charge for ‘eyebrow appreciation’ as they basically act as a photo frame for the rest of our face.  There is so much attention on shaping, tinting, feathering, and waxing, that we have no doubt failed to remember the pure functionality of eyebrows. As someone getting back into an exercise regime (without eyebrows), I now have an abundance of appreciation for why I actually need them: to stop sweat from running straight down my face!  

But it has become more than that when trying to reconcile the weirdness in the mirror – thankfully I’m a fair-haired creature, so an absence of eyebrows and eyelashes hasn’t been as much of a shock compared to what my brunette cousins must experience. And for men as well. Nonetheless, there is something missing in more ways than the obvious. So in an attempt to look (and feel) more ‘normal’, I ordered fake eyebrows (called ‘eyebrow wigs’ … who knew !?). They are made of human hair and are stuck to some adhesive thingy already in the loose shape of an arch that are supposed to just get glued to your face. Sounds so simple! Weird. But simple.  It was therefore a surprise to me when the moment came to inch my foot through the door of ‘normal’ and apply said fake eyebrows, that I instead started crying in front of the bathroom mirror. With one half-stuck half-cocked eyebrow. Had it really come to this? That in some desperate attempt to look and feel more like me, I was sticking someone else’s hair to my face? And that those, plus a fake fringe, would fool everyone else (well, more like fool me) into thinking that I was regaining some semblance of self-confidence.

I was wrong. This was about so much more than eyebrows. This was about finding acceptance and recognition in a face that looked anything but familiar. And it was joining a long line of reasons about why cancer brings about so many reasons to ask questions without easy answers.

It also became about recognising love in small gestures. When my beloved walked into the bathroom to find me in this teary state, he looked perplexed. And not just because I had a half-applied eyebrow hovering somewhere on my forehead! I couldn’t get the first one to line up properly and didn’t even want to try the second. But he just took the glue stick from my hand, peeled off the eyebrow, and said “Let me”.

And there it is. The myriad of ways that people need people is beyond definition. It comes in any small gesture that just says: “I’m thinking of you in among all the chaos of whatever else is going on in my life right now”.  When someone passes away, or something devastating happens in a friend’s life (like hearing “Jodie’s got cancer”), people confess to not having made contact because “I just don’t know what to say”.  That is ultimately about them.  The opportunity for connection, for humanness, has been lost. Because it’s actually about the other person and what they need. And for the record, we don’t all need grandiose statements and offerings, because those start to look and feel as if they are about some publicly recognised act of giving for the ‘giver’, as opposed to the gift of simply caring. Of acknowledging that you can’t offer an answer to fix whatever the problem is, or to provide some profound life meaning that will make all the bad news wash away. It’s just about being present. Listening. Connecting. Saying “You matter”. And sometimes it’s just about helping to stick fake eyebrows onto a teary face that otherwise says, “I love you”.

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Conquering change.

What it really meant to finish chemo

“I conquered this moment”. That’s the sign on the wall of the chemo clinic above a big brass bell to represent whatever people need it to represent. Most of the time, the ringing of the bell is about celebrating the last chemo session ... But for me on my last day recently, it felt more like an apology than a party. Like I should have been standing at a private wake rather than a public celebration. There was an applause and cheer from the nurses and even the patients. But I just went back to my hospital chair and cried quietly while I packed up my bag and walked away. 

I thought I'd feel elated, excited, proud. I thought I'd be breaking out the Hawaiian shirts and pina coladas and balloons. That the only heaviness I'd feel would be from the world boxing champ belt that I would have otherwise been wearing after going 12 rounds with chemo. But the heaviness was on my heart (and my backside from the weight I've put on in the last few months). 

I did feel proud that I had come through all of this (relatively) in one piece, but I realised it was much more than finishing chemo. 'This' was really about the last six months since diagnosis when my world decided to flip on its own axis.  I was also just unsurprised by it all... Did I ever give myself permission NOT to get through it? Was there ever any other choice I offered myself? Well, yes there was. I could have put on the pink boxing gloves and taken this all on as a fight. I could have pushed back in denial. I could have allowed myself to become victim to my anxiety about all the things that could go wrong. 

But I didn't. I surrendered to it all with the perspective of treatment, not toxins. I surrendered to the facts like I would lose my hair and that I would have some really crappy days. What I also did was trust. I trusted that there were medical experts who deal with people like me every single day.

I also trusted myself. I have come to realise the hard way that the strongest and most reliable friend I had in all of this was me. And when I say me, I really mean my mind. The messages I tell myself. The choices I make for myself. The decisions I commit to that are about looking after me. Sometimes those decisions and choices have been to shut out the noise of the "should" list and instead spend a morning in my linen cupboard throwing everything on the floor and creating a new colour-coordinated Tower of Towels. And sheets. And cushion covers. And crap I didn't even know was in there (And who can really make those damn fitted sheets have square edges!?). Sometimes it's not answering a phone call because I'm simply too tired/brain-fried/wired to try and string two words together. 

I couldn't tell you what I've done in the last six months. Sometimes it feels like its been one continuous day. People keep asking me though so I've started to think a bit more about a better way to answer it other than coordinating linen cupboards and binge watching house renovation TV shows. 

What I've done is lived. And the last six months is really just a snap shot in time of a life. A life that could belong to anyone. I've done whatever I've had to do to survive. And I don't mean from a life/death perspective (even though it's in the context of a life-threatening disease). I mean to survive each day by nurturing myself enough or asking for help enough to know I can get up the next day. 

I have grieved so many things - lost plans, lost opportunities, lost choices, lost identity, and lost confidence. 
I have persevered with love and compassion in the face of bitter brutal disappointment from people closest to me who were never supposed to know how to deliver such blows. 
I have suffered pain, fear, hurt, anxiety, sadness, grief, anger. 
I have surrendered, fallen over, laid down naked, and not gotten up. 

But I've also received with absolute clarity the gifts of trust. Of kindness. Forgiveness. Openness. Vulnerability. Hope. Love. Laughter. Courage. 

I have honoured myself, my life, and the choices I’ve made.

I have embraced all the unknowns and all the choices I still have in front of me.

I have heard quiet for the first time in a long time. 

I have given myself permission to shred the Should list(s) and replace them with Today I think I feel like...lists. 

And above all else I have evolved. I have changed. Pain had gifted me that.

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A chat with Joe Black.

Acknowledging the near misses

Cancer has usually meant death. Thankfully these days, there are more people that survive a diagnosis than don't, but it still feels like a limp handshake ... it just lingers until you feel like you've finally washed it off.   

For people who hear you've got cancer, the inevitable silent thought arises: "Thank God it's not me". Like a near miss in the car. It is only natural to be confronted with your own mortality. The what ifs. But then the moment passes. Rarely do we think about the need to change our entire perspective on life - no, because that's happening to someone else.

I've always been curious about how people respond to traffic jams caused by a fatal accident. How many of us really do pause to think about the person whose life has been lost instead of just the inconvenience of running late for something apparently far more important.

Being on the receiving end of a cancer diagnosis can be the same - thank God it was caught early. What if it comes back. And there it is - the face of mortality looking at you wanting to have a chat. (If only they could look like Brad Pitt in Meet Joe Black).

It's confronting. It's frightening. But if we allow it, it can also feel exhilarating. What would it mean to start again? I've done it before from the point of view of moving states, changing jobs, kicking off a new life full of possibilities. But ultimately the view changes but the vessel (me) hasn't. And without a cancer diagnosis or some other near-miss, why would I? Why would anyone? I'm not suggesting that everyone shaves their hair off, stands naked in the mirror, assumes their superwoman pose, and questions "who could this be?" rather than the usual "who am I?" But this experience for me has absolutely demanded it because I don't want a repeat. Another brick wall. My view and my vessel are both changing and yet I'm standing in the same spot.

It's a choice how we care for our bodies to help recovery (although I'm sure my impulse buy cold press juicer could have been a little smarter!).

It's a choice how we cobble together supports that may come from so many surprisingly wonderful people if all you do is ask and be open.

It's a choice about whether we view chemo drugs as lifesaving medicine or demonic poison.

It's a choice whether we walk towards accepting that yes, our hair will likely fall out rather than painfully waiting for handfuls of devastation to wash down into the shower drain.

It's a choice whether to take a chat with Joe Black (mortality) as a reason to pause, question and potentially change our view. Or whether we're just thankful that the near miss passed us by and keep driving.

I came across the concept of 'mortality motivation' recently. It now causes me to have a set of questions ready next time I meet Joe Black:

Did I live? Did I love? Did I matter?

Until that time comes, my goal is to make choices as though I already know his answer: Yes, he will say. Yes, you did.

 

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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.  

Love Hurts.

Moving through disappointment  

Some have stood in the doorway of my cancer diagnosis and walked away. Those that were expected to be there front and centre at ground zero. And yet they weren’t. Or they couldn’t. Or they didn’t know how. And so I’ve cried. And I hate crying – I used to view it as a sign of weakness and would swallow my tears in front of others and replace with ice cold steel resolve. Until I got home, alone, and then I would let it come. I did this in part to save the awkward moments for others, because trust me when I say that I am an ugly crier. The pasty pale face with a solid dusting of pink (thank you rosacea) means that I just look like a swollen beetroot. The kids at school had it right, ‘Beetroot Face’ – that’s what happens when you’re fair haired/faced, growing up in Alice Springs smack in the middle of the central Australian desert.

It takes a good half hour for the heat and colour to leave my face, so it’s not like I can just let the tears roll, and then gracefully wipe them away and convince others of my regaining composure. Like those glamour pusses that prance around like …well, Prancer, and don’t even break a sweat in their 5 or 10 km display of the latest in leisure wear. Doesn’t even look like they left the brunch table. Me – Rudolph. Cardiac arrest warning. You get my drift.

So, yes, crying in front of someone is/has been a big red no – civic duty to others, tick! The other part is just that I just don’t know how it's going to end. Or when it will end, because sometimes it just feels like It could last forever.

What makes me cry more than anything is when I’m crying because of love. We’ve all been there – at the bottom of a tissue box, an ice cream tub, a secret chocolate stash, a bottle (or three) of wine. Because when it's love that hurts, I have to wonder what on earth will help me heal? The expectation we have as kids is that love will conquer all. Life will be ‘Happily ever after’. The good guys always win.

But what I’ve come to realise is that the one little caveat to all the above is that the answer doesn’t lie with someone else. Especially when that someone else has gone just when you need all the love you can get. What will help me heal from all the crying lies within. Self-love will conquer just about everything, if I believe I can. Self-love means that I can live happily ever after because I choose to be happy in every possible moment I can muster a smile. Self-love means that I will always win, even if the game ends, because I did all I could. We search for so long to find someone to love us, to be loved, and yet forget that we can’t possibly expect of someone else what we can’t do for ourselves.  In the end, love presents in the unexpectedly familiar - the hand to hold is mine. The arms to embrace are mine. The consoling voice that ‘it’s going to be ok’ is mine.

It also means that I can receive and recognize support in many other ways, I just have to ask for it and accept it gratefully. Because while some have walked away from the doorway, others have bounced in (Tigger style!) carrying care packages and kindness. Friends from ten years ago who reach out ready to pick up where life left off because somewhere along the way, stuff just took over and life moved on. Disconnected friends who heard from someone who heard from someone else that “Jodie has cancer” becomes a wonderful (but shitty) reason to reconnect. New friends who just want to ask if I'm ok, and would I be interested in a wooden spoon carving course...because we can!

Those that can stand with you, beside you, and even offer to kick and carry you around that marathon track are all part of the story of how we love IF we let them in. Because sometimes we need them to remind us that we can and should start with our own heart first.

Copyright: Image provided by Marina Locke photography.

Copyright: Image provided by Marina Locke photography.

Under the shower.

Losing my hair from chemo

I sat in the shower as the water washed over my head and ran my hands over, knowing that I was about to bear witness to loss. At first it was wonderment. And relief that this moment was finally here - the one thing everyone fears the most with chemo. I'm always one for planning and preparation, but I just couldn't reconcile that there were literally hundreds of hairs on my palms each and every time I touched my sore head. It was as if I was seeing it for the first time, every time. Like those tv infomercial ads that never stop..."But wait!! There's more!!"

Then I cried. I'm not sure why. It's not like I didn't know it was coming. Maybe because this was about more than just hair, because it felt like a moment to be reborn. Under the shower. Peeling off hundreds of layers. Of memories. Of lost wishes. Of new hopes. Is this really what it means to have so much of ourselves wrapped up in our hair? Men are now becoming more able to save/regrow/regain otherwise lost youth or confidence. But for women it's so much a part of our path into becoming a woman and owning who we are. It's every compliment. Every touch of a lost love. Of a heated embrace. Running fingers through fringes - that was my thing. Every hairdresser that would comment on the colour, the wave, the texture. Red. Ranga. Strawb.

My self-confidence, like almost every other woman, was so intricately tied up in my hair (pardon the pun). I applaud anyone who, like me, has sat in a hairdresser's chair, waiting for the big reveal to match the expectations and future hopes that come from the new look - sometimes it's for a new job, or to cut/hack off the pain of a breakup. But there are also those times we silently cried at the realisation we just didn't look like the photo. Or that the pain was still there despite the dead memories on the salon floor. And yet we still paid our hundreds of dollars only to walk out, go home, and find ourselves in this exact moment... crying under the shower.

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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

Moving from Regret to Accept.

The infertility reality check.

This is not a lesson about mutant genes and mutated cells. There are hundreds of expert information sources out there to explain the medical reason about why cells develop at a certain rate within certain conditions and create the perfect storm for cancer to grow in your body.

There is no blame, no misdirected responsibility about ‘if only I didn’t drink soy milk’ or ‘if only I had eaten organic vegies’ or ‘I should never have gone on the pill…’. There is, however, a tougher task ahead to accept that cancer does not care about timing, or whether you’re ready, or whether you’ve got all your ducks in a row before it punches you in the face. For me, the twisted gene pool may suggest it was just a matter of time. But time was not on my side for this.

At 40, the world of breast cancer still considers me ‘young’, but in the world of maternal matters, I’m geriatric. In fact, I’m past geriatric. I’m graveyard. It’s like the worst oopsie moment in history … Had a baby yet? Oh ! Oops !  There I was thinking that, even if the geriatric ovaries were already in retirement, surely IVF would sweep in as a superhero and deliver me a time machine so I could go back to my 20s and plan for the next 20 years before 'life just happened'. 

You see, I seem to have forgotten to take on the advice of my smug-married friends to just settle down, get married, and pop out a kid in between building a professional career and falling in love with all the wrong guys at the right time and falling in lust with all the right guys at the wrong time and having a mental break down and building myself back up again and moving towns, cities, states, jobs, desperate to find something more than what I had. What I was. Who I could become. How many times had I felt the sting of loss and disappointment that ‘he’ was not going to be the one. That my window was closing. And you know what, for most of that time, I was not exactly prioritising procreation. It was all about recreation. But along comes a magical man when I'm 39 who would finally love me for me. Would see what truths lie behind my eyes, would breathe life into my heart, would inject hope and happiness into my soul. For a moment, I allowed myself to dream that stupidly girlie girl dream of a wedding dress and a house on a hill and a chance to create a new life from new love.

But this is where Injustice and Unfairness and Regret all came to dance at my pity-party. The options of having a baby when you’re about to take on cancer are less than great. It’s basically a done deal – without exploring a myriad of options and impossible timelines/risks/consequences, it aint’ gonna happen on my terms. I have one shot that's sitting in a freezer somewhere waiting to see what's possible in about three years. Until then, I will find time to grieve what could have been. But for now, it’s something that I’ve added to my arsenal to remember why I need to take this time for me to heal, to recover, to regenerate, to re-emerge as something and someone who refuses to sit in the passenger seat waiting to arrive to meet Happiness. I’m done with the bullshit rhetoric about ‘when x happens, and y happens, and the planetary alignment joins up with the sun and moon in z’ … THEN I’ll be happy. No. Today I am happy. I am ecstatic. I now move into the world of preserving and protecting my next phase of life. A phase that is still going to be full of love and hope that offers sanctuary for my soul. Of actually living. Chemotherapy and radiation are my friends. So too is my cold press juicer, some turmeric and wheat grass shots! And I will embrace all of what is to come, including the crappy side effects, to make sure that I am not sitting in another hospital bed unless it is when I close my eyes for the last time at age 93. I may not be surrounded by my borne-children, but I sure as hell will be surrounded by love.

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The 'C' word.

How having cancer becomes about everyone else. 

You’ve got cancer.

Three (well, three and a half) little words that echo throughout your brain space, soon followed by silent ‘What The F*’ screams.  Nothing else matters. No one else exists at that moment, except the poor doctor facing opposite you, telling you that your life has forever changed.

Cancer should be eligible for a UN peace prize – it doesn’t discriminate. People. Pets. Babies. Mothers. Criminals. Saints.

I just sat there, alone, wondering how I had managed to walk onto the set of someone else's movie. 

For whatever reason, today, cancer chose me. 

So far, it has become a timely reminder that the strength and resilience (I hate that word by the way) that I thought I had lost years ago was in fact still within, ready and willing to face war.  And it does feel like that – a war.  But you quickly realise that the battles (most of which are all ahead of you with a big ‘To Be Confirmed’ sign attached) are being fought on many fronts.  Family, friends, loves of life, all hear the ‘C’ word and it becomes all about them. It’s about you, yes, but it’s also about their fear of losing you, of not having any say in the matter, of picturing what life might be like without you.

Mothers – the ever-enduring and self-sacrificing “it should have been me.”

Sisters – the silent hugging and sobbing. Followed by just silence.

Fathers – the palpable pain and regret for not being able to protect their daughter.

Life loves – the collision of helplessness and hopefulness etched on a face.

Friends – the tears on standby as they feel the weight of the bomb residue left behind after hearing your "news".  

Then there’s the complimentary reminder from the insurance company that you’ve got death coverage, should you need it.

And the remarks from people who are parents that my impending infertility is a blessing because they could quite easily strangle their beloved Little Johnny lately... 

And so it comes again. In waves – the pity party for one, followed by the stench of stoicism. Then anger masking complete fear and panic. Then disbelief.  An out of body experience. The desperate need to go and lose yourself in a cheap comedic cinematic experience to just forget for two hours that This. Is. Actually. Happening.

I kept hearing the words "you’re a fighter, you’ll beat this, cancer has no idea who it picked a fight with". But I could not, and would not, identify comfortably as a fighter or a survivor. To me, it means I’ve allowed cancer to determine roles and responsibilities from the outset – me: the fighter, and cancer: the aggressor. I was very fortunate to have acted on early warning signs and avoided an all out assault.  I chose instead to view my experience as a life preserving mission, not a fight to the death. Literally. Because to me, ‘fighter’ respectfully belongs to all those souls who have been given the worst odds that life could offer, like a woman who dies within 6 weeks of diagnosis because a recurring chest infection was actually stage 4 lung cancer. Or a man with brain cancer who valiantly leaves his life on his own terms because he knew he’d done all he could and it was never going to be enough. They are the ones who have to fight against the knowledge that nothing, short of a miracle, was going to reverse the carnage that cancer had bestowed upon their bodies. Fighting is about finding the courage to keep moving when there is nothing to move towards except death. It is about the strength to claw onto every inch of dignity and independence when all that is left is silent acceptance of the truth that you cannot win this round.

I instead move politely out of the way when someone is using words like fighter or survivor. I’m just someone who copped a crappy body-intruder, who now needed some treatment with crappy side effects. But more importantly, I'm someone who is gripping tightly to a reason to make a lifelong pledge to myself and my beloveds to truly live and honour the value of life and also hope that this MOFO never finds reason to come back for a follow up visit.

Breast cancer is a funny one – we all grow up feeling self-conscious as young girls, especially ones like me who ‘developed early’. I had boys flicking my bra strap in year 6 that left me begging, pleading my mum to only make me wear the bra at night time so that I would stop being picked on and laughed at. Clueless of course that the law of gravity was not on my side! But this marked the start of a long journey into womanhood rejecting the reflection in the mirror. I was too tall, too pale, too heavy, too nerdy, too ambitious, too stubborn, too independent, too much to warrant the acceptance of myself. How ironic that it was the reflection in the mirror years later that would now save my life. 

In the absence of an apparently never-ending list of 'I love me nots', I focused on my two greatest assets: my hair and my ‘epic cannons’ (aptly described once…). They became critical to defining my self-worth but had never really extended to self-love. A dear friend once said to me that one day, I would meet a guy who saw me for more than just a pair of boobs and long hair. And she was right. But cancer has re-planted that resounding fear in my head about how I embrace who I am as a woman if I didn't have my long hair, or boobs, or uterus, or ovaries, or having birthed a child.  

In the meantime, I am replacing the list of baseless fears with an Indiana Jones-style re-make with me front and centre in the search for my own holy grail. I found out that in eastern medicine the heart meridian line runs from my left hand up my arm, through my left breast and under my arm/shoulder. Bingo. That gap in self-love is exactly where cancer has taken up residence. So, in part it’s understanding my gene pool, but more importantly it’s about treating myself with care and kindness and understanding and acceptance - all the things I have offered to others but rarely myself.

The first step is making this all about ME in the ultimate act of honour and self-preservation. No one else can do that, no matter how hard they want to. Part of that is learning how to give love back to whatever the mirror offers me, especially the days when I don't even recognise the reflection. 

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Hitting brick walls.

Processing a cancer diagnosis.  

When I was diagnosed with cancer, I ran smack into a brick wall.  I hit it with the full force of 40 years’ worth of dreams and plans, and mistakes and regrets.  Alanis Morrissette was screaming “Isn’t it ironic?!” loudly in my ears at the point of impact. There I was talking about fertility planning with my doctor one day, only to be told the next that I had invasive breast cancer and would be rendered infertile by the treatment that would destroy it.  

At times over the last few months, it has felt like the moment of hitting that wall is on repeat and being replayed over and over again in slow motion. And yet at other times I’m bearing witness to it, observing and documenting every scene in some feeble attempt to figure out how on earth that brick wall appeared in the first place, and how the hell I failed to avoid it.

In my search for answers, I started researching. I treated it like I would my work where I have spent over 20 years immersed in plans, projects, law, facts, evidence, and data.  And boy, do I love a good plan - I have a plan for my back up plan, and a contingency plan if that back up plan fails. And so, I set about project managing the shit out of that first 6 weeks when I was otherwise at risk of drowning in a tsunami of hospital admissions, tests, scans, specialist appointments, and forms.

What I couldn’t easily find was information about how all ‘this’ might feel.  Now, the A-Z of emotions to expect when facing your own mortality is a pretty hefty-sized book. And I’m confident I dog-eared the edge of every page in the first week after being diagnosed.  But what I wanted was a sign post, or just a smoke signal, to point me in the direction of the missing chapter of ‘N’ for ‘Normal’. 

I came to realise that there was no such thing as normal through listening to other people’s stories. Instead I listened to random chance encounters about how someone had come through the other side of cancer, and sobering reflections about those who did not.  And from there, I allowed myself to create my own normal by accepting how I was feeling when I needed to feel it, and to listen to my body for the first time in a long long time.

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