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. 

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.

How I got here.

A bit more about me.   

In my past life, prior to this diagnosis of breast cancer, I was immersed in the world of important meetings, structure, routine, coffee breaks and chasing clocks. I was building a career narrative that said I’m making a difference – I was changing the world and fighting for those who couldn’t necessarily fight for themselves. Instead of using my law degree to rack up billable hours, self-fund a lux yacht and push myself into an early heart attack, I worked on changing how government does its business of supporting its people.  Everything from child sex abuse, bushfire trauma and recovery, anti-corruption, mental health, alcohol abuse, and domestic violence. I walked tall and proud with my cape under my black skirt suit (with undies on the inside).  I felt like I was put on the planet to fix stuff, because I was damn good at it. Implement the impossible project.  Meet the impossible timeline.  The higher the degree of difficulty, the more I said, “Just watch me”. Unfortunately, I applied that same Ms Fix-It approach to my relationships. I would find the next broken-winged bird to help put them back together but ultimately, every time, I just ended up watching them fly away. They were healed, and I was alone. So, I would dive right back into the next impossible work task and get busy saving the world again.

But three years ago, it was my wing that broke. I was so busy fixing everything else and everyone else, I didn’t even feel the first snap of bone. It wasn’t until I was hanging from the cliff of depression that I realised I had forgotten about how I should be saving myself. And by then it was too late. The person I knew had gone, and instead I was left staring at the face of a stranger. Someone who couldn’t decide whether to have a shower, stay in bed, get dressed, eat, talk. The ins and outs of me going back in time and re-examining that story will come later, because that story is not uncommon. Just like breast cancer. But I write this blog in the knowledge, or at least the gut feel, that the two are not unrelated in my story. The cause of both lies in my absence of compassion. Not for others, and every social justice cause – for those, I delivered compassion in bucket loads. It was the absence of compassion for myself and using the noise of ‘busyness’ to drown out the quiet voices of self-care and self-love. 

Cancer, for me, is now history repeating, just with a different punch line. I managed to piece myself back together with what probably resembles a patch up job with sticky tape, because I clearly hadn’t finished healing. The toll now is on my physical health. And ironically (or not), its breast cancer – surely something for women that represents the purist source of nourishment, nurture and love.

I had two choices when I was sitting across from cancer – to invite anger and rage to join in or ask them to quietly leave the room. In the end, it wasn’t a hard choice to make because of the power of a story that could just as easily have been mine. It continues to serve as a sign post that doesn’t say “why me?”, but instead “why not me?”.

The story was gifted to me on my first day of chemotherapy. I was sitting next to a woman, a mother, whose beloved daughter (my age) was going to die in the next 6-12 months. Cancer had returned for the third time in five years.  It was a factual story. By the end, the tears were mine, not hers. She wasn’t angry, not one bit.  She was instead proud that her daughter was ticking off her bucket list with her husband in quiet surrender to the inevitable injustice that Fate was going to deliver. It was the most graceful ode to acceptance I have ever heard. 

And so I chose at that moment to commit to myself that I would do everything I could to change the tone of my story. To accept any and every opportunity I had to find a ‘something’ where others may only see ‘nothing’.  This story of mine is still being written, I’m only part of the way there, but that’s all it is – my story. I haven’t set out to represent the collective view of every person who has met cancer or lost someone they love from it.

What I hope to share above all else is that, in amongst a hundred choices that may have been taken away, including how the story may end, we can still choose how we turn each page.

Copyright: Image provided by Marina Locke Photography.