Best Laid Plans.

Reconciling what was and what now is

I thought I had planned everything in the lead up to my first day back at work. Right down to where I was going to get my morning coffee.  When I drove into work and saw my favourite coffee place had a ‘for lease’ sign in the front window, it was probably an omen of the morning that was coming. If only I had included on my list “managing disproportionate emotional response to Every-Thing”.

I wasn’t prepared for the electric shock every time someone walked past and I saw them pause; their puzzled brain-cells trying to reconcile the familiar face but unfamiliar hair-cut… and then the gradual increase in volume: “Jodie !!! You’re BACK !!!” At first, a lovely, albeit loud, sense of re-connection. But after the 10th time, I hit my ever-so-quick-to-disintegrate emotional threshold. I managed to delay losing my shit for the 3 minutes it took me to scramble for the comfort of the lift and find some outside oxygen.

It’s been two months since I’ve been back at work. Some days I feel like time has stood still for that whole year and I’ve just walked back in from getting a coffee. But other days I feel the weight of a cancer carcass strapped to my leg … Do people see it when I walk by? Do I look like someone who had cancer? (the short back and sides is a bit of a giveaway). Is that what people are saying in the kitchen: ‘She’s the one who had cancer’? I was asked to update my online work profile picture recently because some people simply still don’t recognise me. But I don’t want to – a part of me just wants to look like her again. 

The other day was one of those days when I just wanted to forget about the 12 month time warp. My photo ID flipped open and there she was – Jodie B.C. (Before Cancer). Long strawberry blonde hair, smiling, clueless about what was actually important in her life, and clueless about the extraordinary way that Life was intending on flipping the table she was sitting at when she least expected it.

It’s like it all happened in a vacuum… I was gone. Now I’m back. I’m driving the same route to work (with a LOT more traffic), doing the same job (part-time) with the same people (mostly) in the same building (just with a new fit-out). The danger comes from allowing myself to clamber back inside the hamster wheel to start walking/jogging/running in the same spot with my eyes fixed at the same wall.

The kicker is that Jodie A.C. (After Cancer) has a very different view of the world, and it’s one that I’m forever grateful for that I would not have ‘but for’ cancer. Like going from those old black and white 20-tonne TVs with the wire antennae hanging half-cocked delivering a fuzzy outline of a face at best. To now having a High-Def, 75 inch full colour smart TV that can probably make me dinner while I’m binge-watching Big Little Lies!  The change in view is beyond comprehension. It’s got me asking: Is this all there is? Do people not want more than keeping everything as it always has been? Am I allowed to ask for/expect more?  

I now accept that a disconnect exists between people who have experienced trauma or grief from a health/life crisis and those who have not. For those of us in the “have” group, we each bear scars but also silent strength from being forced to make a set of choices: Change or Forget. Accept or Deny. Conviction or Acquiesce. Resolve or Apathy. The tolerances long-established when we were part of the “have nots” no longer apply. Perspective and gratitude can be lost on those who have never had to claw their way towards acceptance and hope. For our troubles, the “haves” are bestowed the luxury of selfishness (my word for self-prioritisation) and time – we make decisions based on what we need, whenever we want. Let’s call it an ‘entitlement’ … not usually a favourite word of mine, but in this case, it serves the purpose of nourishing and nurturing ourselves, enforcing boundaries, speaking truths, and believing in all that’s possible.  (It doesn’t, however serve to justify the M&Ms binges that I’ve been indulging in lately... but that’s for another post).

You can’t plan for change – I mean, as a change manager in a previous life, you kind of can, but the key principle in change management is that it relies on individual ‘motive’ to get it across the line. The desire to want change. And let’s be honest – most people would absolutely avoid such significant change. Because great change usually comes from great pain. It’s not exactly something we are all sprinting up to the front of the line for….”I’ll have an El Grande serve of Pain, thanks! With a side order of Shit Sandwich.” And then the guy behind the bar says, “No worries, here’s your Change!” (just a little joke, right?).

On a serious note, my change plan for now is simple while I ponder what more I want from my world - to continue to believe the words that are etched on a small plaque hanging in my bathroom: May every sunrise hold more promise, and every sunset hold more peace.

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“Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending." - Carl Bard

Plane perspective.

The different view that comes from distance

I’ve recently come back from a month’s extended holiday - the ‘big trip’ that I promised myself when I was half-way through chemotherapy. It was in part something to keep me focused on when ‘it’ was all over, in line with sage advice from people who had been where I was.  But it was fuelled by the knowledge that some much-needed perspective would probably only likely come from being on the other side of the world; the other side of my world.  It’s a bit like the whole ‘death puts life into perspective’ thing - everything ‘big’  suddenly feels so small when looking down from the window of a plane.  And once we moved above the clouds, I found myself breathing in the awe of possibilities and wonder, and breathing out the uncertainty, grief and anxiety and that been creeping in lately.

You see, I’m fast approaching Return-to-work Day after this holiday, and I’ve been almost suffocating myself with self-doubt.  After 12 months of sick leave, it’s time to dust off the work pants and heels and brain cells.  Only problem is the work pants don’t fit anymore (compliments of my own excess baggage from the  chemo/carb-festing/steroids/etc); the heels hurt my feet (continued joint pain/inflammation from the chemo and medication), and the brain cells seem intent on pursuing a part-time comedy career rather than one that requires analysis, memory, and quick thinking (the ongoing joys of chemo brain that hijacks my choice of words/thoughts and sprinkles embarrassment from random brain fades). Then there’s the sudden hot flushes/sweat-festing (also from the medication). And the short back and sides haircut where I once had long locks (the post-chemo do). All of which has led to my ongoing growing fear that I don’t look and sound and think like me anymore, so how can I possibly go back to work and do my job the way I used to? The way others were used to? The weight of expectation had been feeling as heavy as the jet plane I was in.

As the plane rode through the turbulence and the bumps and jolts gave way to calm above the clouds, I came to accept that I won’t be doing much at all in the same way that I used to. But wasn’t that the entire point of this trip; this much-needed perspective; this whole 12 months of re-examining my life and priorities? I may be feeling anxious about my ability to chair a meeting without forgetting my name and what I was doing there, but so-the-hell-what !? I had just run through the finishing line of cancer treatment. My life and world view had changed. The BIG things that felt so onerous and insurmountable before were now feeling ridiculously pea-sized. So what if I’m wearing flats and elastic-waist-banded pants, and sporting a military crew cut, and break out in a sweat in the middle of a meeting, or forget what I was saying mid-sentence.  Those things will be as big or as small as I choose to make them.  This time, it’s me flying the plane so it’s my call about how long I experience the turbulence and how quickly I bring myself up into the calm.  

A new normal.

Walking out of the treatment bubble

Despite the long list of ‘crappy’ inevitabilities from treatment this year, there is a level of comfort and protection created from the constant hospital visits, cancer-fighting drugs, specialist appointments, and general routine check-ups.

But then the day comes when you burst the treatment bubble. The last day of treatment. In anyone’s book, this would be a day to celebrate. And it is. But like any good party, there is a massive hangover waiting for you…

It’s one thing to manage and push through the staggering list of physical changes/impacts/side-effects of treatment. In some ways, these are the easy things to manage because most of them are, by nature, temporary, while undergoing treatment. Like chemo nausea and fatigue or radiation burns. Within all of it is the emergent emotional roller-coaster that serves up heavy doses of fear and anxiety from dealing with treatment, such as hair loss or infertility or waiting for pathology results. But again, these are largely temporary and eventually pass through you the closer you move towards acceptance.

Now, at the end of treatment, the physical side of ‘normal’ is beginning to return. My hair style is resembling that of Johnny Howard – the back and sides have filled in, but I’m sporting patchy bum-fluff/bald patches on top (always the last bit of hair to grow back!) instead of a desert wasteland of hair follicles. Even my eyebrows and eyelashes have started to emerge (no more stick-on eyebrows!).

But the longer-term emotional changes and impacts have apparently been sitting patiently on the sidelines in wait.  I felt the first sting when packing up my make-shift pharmacy (in my bathroom) – the bicarb soda/saline washes, dressings, anti-nausea tablets, etc were easily thrown in the bin. But then I came across the over-shoulder bag that I carried my surgical drains around in for three weeks. And then I looked at my chemo caps. And fake fringes. Should I throw those out too? What if I need them again? And the fear almost winded me – “What if it comes back?”.

It’s like throwing out the ‘big’ clothes you used to have hidden in your wardrobe because you don't want to give yourself permission to gain weight again, yet you find yourself hanging onto them just in case you indulge a bit too much over Xmas... But by holding onto things like surgery bags and chemo caps, am I passively giving into the thought that it could come back?

Cancer feels like it has left me with a port-wine-stain birthmark ... it is now permanently and visibly a part of me and my identity. And while I could wish it away or choose to cover it up, it has changed who I am, how I view myself, how I view others, and how I view my place in the world. I could not possibly have achieved such a dramatic change in perspective without the enormity that comes from facing one’s mortality.

I appreciate, however, that some instead choose to sprint to the finish line of treatment and slam the door in Mortality’s face. It comes from a deep, desperate desire to feel the comforts of ‘normal’, familiarity, routine, and everything B.C. (Before Cancer). I can only imagine the purge that must come in the form of a skip-bin-sized dumping of all physical and emotional traces that would suggest life was “back to normal”.

But I don’t want to go back. I don’t actually think I could, even if I wanted to. I have grieved many aspects of my life this year, and permanently laid them to rest. Some of that grief is wrapped up in relationships that have not withstood the emotional burdens that have come with supporting me in my need to fall and break so that I could rebuild and reclaim my life. There is also grief in the way I used to work – my professional identity. I am no longer willing or able to quantify my self-worth or my confidence on the basis of job titles, status and a long list of career achievements. They are now part of my story; my world view, but they no longer define me.

The largest part of the grief pie has been divided up for me and my personal identity. Never has this been more absolute than looking at an old photo of myself from last year - laughing, long hair, care-free, and cancer-free. I will never be ‘her’ again.

The laughing is returning, and in fact held my hand through the worst of times this year.

The long hair is at least five years away, but it’s just hair, and I’ve come to accept my reflection and embrace my bald head as a way of respecting that this entire year gave me the strength to be laid bare.

The care-free is now a mandatory part of my approach to walking slowly and smelling the roses/jasmine/frangipanis on the path to living a happy life. But it’s a qualified state of being, where I am both humbled by, and grateful for, the randomness of life, while also keeping Anxiety in my peripheral vision about whether the other shoe will ever drop …

Which brings me to the cancer-free part. That part will reside in a silent prayer every night and every day for the rest of my life. But it keeps me grounded in the super-human powers I didn't know I had. It keeps me grateful for the new strengths to relationships I didn't know were there. It keeps me connected to new friends and new experiences that I would have never had ‘but for’ cancer. And it keeps me forever appreciative of the infinite wonder that the human body (my body) represents, as each eyelash, eyebrow, hair follicle, and healthy cell regenerates and offers me renewed life.

I’m now standing in front of the blank canvas that is my life, being invited to paint my hopes and dreams A.C. (After Cancer). The paint palette is the same as B.C., but I can now see so many wonderful new ways to mix the colours.  

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Letting go.

The choice to be free

I was reminded recently about where the power of forgiveness truly resides.

Forgiveness is about you, not the other person. It's exercised for the sole purpose to give yourself permission to let go. It's a choice we make that says we are ready to love again, and be loved. That by letting the other person go, we ourselves become free.

It’s not about forgetting the hurt. It’s about how that hurt is incorporated as part of your story. But it doesn’t have to be your whole story. You decide whether it gets to be one chapter, or one paragraph, or one line, in the memoir you are writing that is your life. 

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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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Labels and limitations.

Finding courage in connections

“So, what do you do?”

I used to define myself by the response to that question. My title. My status. My list of achievements. Me having a good day/a good life was dictated by whether I was rock-starring it at work. Mostly because I didn’t really exist outside of work. I was so wrapped up in all the ‘other’ important stuff that I simply didn’t have time to, or know how to, have a conversation with myself about what I actually wanted to do with my life.  

Now that I’m on an extended break from work, I have to dig a little deeper when answering that question from someone I’ve just met. I almost start to apologise for the misunderstanding – that I don’t have a job at the moment, so am suddenly unqualified to answer the question.  Then I start to say something about recovering from cancer treatment, but that seems all wrong too. I don’t want to be defined by a disease any more than I want to be defined by a job title. I am so much more than that. But it got me thinking about whether it’s time to dream up something a bit bigger and believe it.

I was out with a friend once who managed to convince a guy that her job was grading the St Kilda beach in Melbourne at dawn to make sure all the drug syringes had been picked up before the morning swimmers were out and about. She even went so far as to describe how the indented lines in the sand were formed. I stood there, equally as shocked and impressed as the guy asking the question, but only because she was so damn convincing! Mind you, she was a 6ft sassy glamazon woman, so she could have said she was one of Santa’s elves and I’m sure he still would have believed her… but the fact remained, at that moment, she had painted a picture of doing something completely UN-believable, and yet had such conviction, EVEN I nearly bought it! 

What she could have said was “I’m a [insert label here]” and he would have nodded and imposed his own assumptions about her label, and then said “Oh, well I’m a [insert next label here]”.  And she would have likely done the same. Then there just would have been copious amounts of more nodding to fill awkward silences and more assumptions, and eventually someone would have run to the safe haven of the bartender.

We start by wanting to get to know who someone is but instead seem to focus on what they do. The real shocker is that we do it to ourselves just as much – instead of asking ourselves what we have to offer, we define our worth by what we do: our title.

Labels only lead to limitations. We forget that life is about so much more. It’s about our capacity to love. To accept. To connect. To understand. To share with. To learn about. Those are the real qualities we offer as humans.

So when meeting someone new, what if we ditch the old “So, what do you do?” (and the cheat sheet list of assumptions) and instead try something else…What do you believe in? What did you dream about as a kid? What do you dream about now? If you could change the world, what would it be? Do you sing in the shower? What’s your favourite way to spend a rainy Sunday? 

What if we asked ourselves the same questions. Answering may not be easy, or maybe they should be.

One of best things I’ve done is made new friends that don’t have the last 5 or 10 or 20 years of baggage to throw at me when I say I can’t do something. Or when I say I want to do something different. Like water colour painting. All I hear is “But you can’t paint!” from those that ‘know me’. It echoes my own thoughts “Oh yeah, that’s right, I’m not creative“.  I’ve not picked up a paint brush since year 6 art class. But you know what, I was wrong. And so were all those people who supposedly knew me for the last however many years. Apparently, I AM creative. I just needed some belief and opportunity and the blank slate offered by someone new. The art teacher didn’t say “How many people can paint?” she said, “How many people want to give it a crack?”.

The only limitations you will encounter are those you impose on yourself. This was the advice I used to give young grads coming through the workplace. “I can’t” vs “I can”.  There’s only a one letter difference there, but it creates a lifetime of whether choices are granted or taken away.

As children, we all get given one gift – to dream. As adults, we all get given the additional gift of making decisions. They’re not mutually exclusive, but yet we treat dreams like Santa or the Easter bunny – they eventually get erased or forgotten with ‘growing up’.

Limitations and boundaries will always have a place in our lives… it’s called a coffin.

So in the meantime, my own response to the ‘what do you do’ question, should anyone ask me, will be something like: “I dream big. Walk proud. Breathe free. Live gratefully.”

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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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Life vs. Lines.

The gift of getting old

I’ve never been to the Grand Canyon, but yet I’ve referenced seeing it every day in the mirror for the last 10 years. It’s a massive fault line that runs between my eyebrows (well, used to, back in the day when I had eyebrows!).

I was contemplating a doozy of a birthday-present-to-self last year … Botox. I was being very sensible about it, not wanting to go overboard with the extras like fillers and collagen that would have me resembling something from the X-Files. Just a little bit (famous last words no doubt).

But I chickened out.

And then the strangest thing happened - I got cancer and that Grand Canyon on my face seemed to disappear.

It’s ok, there’s no hidden side effect from chemo that includes creating wrinkle free zones (although the puffy face from the steroids does help fill in the cracks !). It’s because you see what you focus on. The difference in my face is that I no longer focus on it, therefore I don’t see it.  Now my focus has shifted to how many eyelashes I still have left. But I tell you what, my blue eyes seem to stand out a lot more these days!

Lines are experiences, good and bad. A life lived. Loves. Losses. Lessons learned.

For me, that Grand Canyon line used to be just the physical manifestation of a life full of stress/frowning/worrying/thinking too hard about too many things.

But that line is now a proud Harry Potter-style face stamp of accomplishing great things in extreme circumstances in my life. Like living interstate away from my family from the age of 17. Like spending nearly 10 years working while I was trying to complete two university degrees. Like drowning in tears from broken hearts, that were once also great loves. Like busting through 2000 applicants to get my dream job in the criminal justice system when I finally graduated. Like driving through regional Victorian communities devastated by the Black Saturday bushfires, crying silently in sympathy every time I drove those roads or listened to a grieving parent or school principal about children and families that didn’t survive, and asking what I could do to help them. Like bearing witness to the horrors of humanity through child sex abuse, rape, domestic violence, and murder, and carving out a career that would allow me to help them too.

Those stories and faces were the reasons why I worked so damn hard. And now my stress line is my badge of honour. They are reminders that I’ve been a part of greatness. Of great change. That I’ve been around the block a few times. That I have perspectives that I can share through experiences. That I have survived near-drowning in emotions that have shaped my capacity to love, to feel, to fold. And there’s the lines around my eyes and cheeks. Those are from the happiness and the joy every time I’ve giggled or nearly wet my pants laughing from some ridiculous story or movie or joke shared among friends.

So why then would I now set out and erase all of that? (Spoiler alert: I won’t be).

Why do others then? Is it because people don’t want to wear their emotions for others to see? Or to attempt to not feel them at all? To be frozen, emotionless.

In other cultures, lines/wrinkles are a sign of respect, an honour bestowed upon others through experience. It’s wisdom through living. Fears. Failures. Wins.

If all you choose to see are the flaws, that's all you'll ever see. If the concern is that you'll end up on the single shopping shelf without erasing them (in some attempt to look 10 years younger), well, maybe you need to re-think the quality of the potential buyer … And maybe you should also reconsider what your lines represent to you. If there’s only pain, sure, go for the needle or the knife. But remember that there are those who will instead only see the mother of their children. The love of their life. The future potential of a life long partner. A soul connection. 

Growing old is a gift that not everyone receives. And yet we tend to fear it and wish it would go and visit someone else. What we forget is that it is a privilege to age, not a punishment.

Now, where others choose to focus on lines or wrinkles, I see life.

And so it’s Happy Birthday to me … this week I’m 41 years young.

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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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Eggs.

The dangers of silence

While everyone is walking around on egg shells, no one is focusing on the mess of raw egg guts all over the floor.

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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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Sitting across from Anger.

Resolving the anger that comes from absence of control

Many many years ago I was an angry kid and grew up into an angry young woman. It wasn’t just the red hair, or the self righteous view I had of how well Lady Justice was performing her job in the world. For all sorts of reasons, I ended up [angrily!] siting on a couch opposite an anger management counsellor when I was about 20. But I owe three life lessons to that chat.

One – anger is not a real emotion, it is a symptom of something else. Fear, frustration, hurt, disappointment, take your pick. Usually they are the emotions with the softer voices, who find it hard to be heard over the constant banging sound of the imposter, Anger, pummeling their heads into the wall.

Two – you cannot control what happens to you. You can only control how you react to them. Anger is what happens when you’re in a state of resistance rather than acceptance of that little fact.

Linked to that is Nicole Kidman’s life lesson from Days of Thunder (another red-head!) who said it best “Control is an illusion, you infantile maniac” (to soon-to-be-hubby, Tom). I prefer my version – control is a delusion. We delude ourselves into thinking that something may change the louder we yell.  And unlike crying, I am an extreme athlete when it comes to anger. Well, I used to be. Slamming doors, throwing remote controls against walls (a near miss), wrapping my arms around my legs so that I physically couldn’t get up and hurl the dining room chair across the room. Those were moments when I lost myself.

Anger is a powerful weapon. I’ve used it many times when I’ve needed absolute clarity that a door to injustice had to be slammed shut, never to be opened again. What’s interesting about anger is when we talk about it, we give fuel to its very existence – a lack of control over it. It’s “I lost control of my anger” or “I can’t control my temper”.  Choosing anger, however, has no role when we instead need to open the door to self-compassion and healing. It would be like asking Arnie (T2 version) to read a bedtime story to a kitten. (I've been doing Terminator re-runs lately). 

So here’s the kicker in life lesson no. 3 – it’s a choice whether we ‘lose control’ of our anger. It’s a choice whether we invite anger in at all and sit across from it.

For most people sitting on a couch opposite a doctor telling them they have cancer, anger is waiting backstage to get its own microphone, practicing its big Broadway style mic-drop, and hoping to slap its star performance onto your backside as you leave the room.  Thankfully for my doctor that day, the distance that comes with 20 years and some emotional evolution, I just cried rather than up-ending the table.

I have been surprised and shocked as anyone that I have not had an anger relapse, because you’d think of all things, THIS would be one reason to tell the other life lessons to go to hell.

But I didn’t. And I haven’t. Because choosing anger would erode my ability to nurture and care for myself. It would mean that I move one step further away from acceptance each day I wake up and say no to self-care/self-love or to just give-a-shit-about-myself.  So I get up every morning and choose me. I choose yes to nurturing and caring for myself.  And by extension, I’m saying yes to my beloved, my relationship, and those who love me that THEY matter.  It doesn’t have to be omm-ing in the moonlight or wheat grass shots with a turmeric chaser. Sometimes it’s just reading quietly in the sun. It's walking to my local coffee shop because it’s a good day (I can make it past the corner !). It's driving an hour and a half to walk/shuffle along the beach with one of my oldest and dearest friends. It’s caring about me in that moment, on that day.

No amount of anger from me, my friends or my beloveds, will remove cancer from my life. It’s done. That was the path laid down at my feet on the 29th of March 2018. My job now is to walk that path with dignity and integrity and respect for myself and those who care about me. I'm not suggesting that every day I'm dancing that path like Pollyanna, because that would be part of the delusion. But on most days, my head is upright. And on those other days, I am more than ok with using sticky tape, a glue gun, blue tac or even someone else’s hands to hold my head for me.

Either way, I'm not letting anger control my response to the uncontrollable. The fact is, bad things happen.  Little girls get killed crossing a car park.  Older girls get murdered walking home from work.  Wildlife warriors get killed by the wildlife they’re fighting to save.  Two year olds get thyroid cancer.  Thirteen year olds get ovarian cancer.  Fathers get brain cancer.  I got breast cancer.  Sometimes, anger will win – it will knock on the door and come and stay for a day, or a week. Or it might just take up residence with its second cousin RAGE. But the over-staying guest(s) will leave the morning you wake up, take a new breath, and say “Today, I choose Me.”   

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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.

My precious.

Reflections in the mirror

Sometimes when I walk into the bathroom, I see a creature resembling Gollum from Lord of the Rings. Body hunched over, sunken eyes, pasty skin, bald head... Oh Precious. My precious.

The Quest for the ring may be for another time, but the words are right. My Precious. Me. I am precious.

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