Goodbye Amazing Woman

In memory of Juliet Wilson.

In cancer circles, many of us (myself included) are propelled towards fluency in death – we find ourselves speaking about it, thinking about it, fearing it, and planning what songs we might want played at our funeral every time we have a scare or annual check-up. It’s not about being morbid, but more about creating a false sense of preparedness.  

A related preoccupation with our own funeral is knowing that we are unwittingly walking into a future projected haze of a loved one’s funeral. The blinding density of this haze ironically borne from the light that we receive from meeting new friends. New friends who share the same linguistic talents bestowed upon everyone who lives with the inevitability of death.

Juliet.

Sometimes when you meet a new friend, you see “IT” – the undefinable ‘it’ that makes others gravitate and levitate. An infectious positivity, grace and humility, curiosity about the world and others. Gifted with a loving son, an adoring husband, and above all else, an insatiable and almost ferocious dedication to giving support to others.

Juliet.

We connected through Breast Cancer Network Australia (BCNA) a few years ago – I was invited to speak on a panel with other women who had been through breast cancer to share some of our thoughts about how to deal with the emotional impact of cancer. I was about 2 years down the track from finishing treatment, another panellist was 5 years. And then there was Juliet, half-way through active treatment, radiant in her chemo-baldness, laughing during the sound and camera checks about what to do if she forgot her name mid-sentence (the joys of chemo brain fog). Needless to say, for someone barely over 5 feet tall, she held the space in every square inch of that room and its extension into the world wide web. She was a goddess. And yet she had no idea. We did. I did.

Juliet.

Canada to Melbourne. Acting and art to the law. Researcher to creator. Long-term chronic illness patient (Lyme disease) to healthy living advocate and author. Even while enduring the double-whammy of COVID-social isolation + cancer treatment, Juliet was able to do the one thing that gave her oxygen … connecting with others. Through writing and webcasts, video group chats, advocating for more awareness for breast cancer and Lyme disease, she still found time for masked-up walks along the beach. With me.

Juliet.

Wife. Mother. Sister. Daughter. Friend. Rock star. Heroine.

And now Angel. Juliet passed away on the 22nd of July.

In one of Life’s cruellest twists, a diagnosis of terminal (metastatic) cancer was laid on her only a week after she had walked down the aisle at her long-awaited wedding in her heart-home of Prince Edward Island (Canada) to her dream man, witnessed by her son, family and friends. Two weeks later, Cancer took her, witnessed by her new husband, her son, family and friends. Befitting for someone who deserved and longed to be surrounded by love that she finally was, on all sides.

Even in her last week, positivity and gratitude filled her messages to me and no doubt whatever energy she had left was employed to shower gratitude over her beloveds while they were trying to reconcile their new language forming about the inevitability of death.

Juliet’s last text to me, only a few days before she died, started with the words ‘Hello amazing woman!’ and asking how I was going.  I’m now sending those words upwards, through the clouds, directly towards the sun’s glorious rays, where rainbows are made and the sunsets over Williamstown beach are painted … I know who’s holding the brushes now.

Goodbye Amazing Woman.  May you rest peacefully forever. Thank you for gifting me with some of your light. xo  

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.

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.

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.

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. 

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.