A Long Game

Since October last year, when I was declared five years cancer free with nil evidence of disease and discharged by my oncologist, things have been going along swimmingly. There’s been no literal swimming, as that would first require a bodily deforestation akin to the complete obliteration of the Amazonian rain forest, but there’s been lots of gently breast-stroking (singular) through life’s currently churn-free waters. My new job is proving equal parts challenging and rewarding, Dave is one week away from heading to Nepal to climb to Everest Base Camp, and Hugh is busy being almost 10 years old, loving computer games, playing piano like Liberace on crack, and teaching himself to draw cartoons.

My new office with the Charles Blackman on the wall feels a bit more lived in now I’ve been in it for a few weeks. Most days I go home with a brain that’s either fried from dealing with multiple competing priorities, or buzzing with possibilities for new projects and concepts. I’ve had some wins and made some mistakes, but given that nobody dies if I bugger something up, it’s all chalked up to experience. Given I didn’t work a single day for eight months through multiple surgeries, chemo and radiation, and then worked part-time for almost a year, I feel incredibly fortunate – and also very proud – to be sitting where I am, doing what I do.

The Everest Base Camp trek has been planned since Dave turned 50 last year – in fact it was my birthday present to him. He is going with a mate, and has steadily worked on his fitness over the past 9 months, to the point where he is trim, fit and ready to go. It is a massive physical and mental challenge, but knowing Dave as I do, I have no concerns about his ability to complete the trek. Of course altitude sickness is the big unknown that can bring Everest trekkers unstuck, and I will no doubt worry incessantly for the 16 days he is away, but I am so incredibly proud that he is going to give this his best shot.

Hugh is in year 5 and is still, for the most part, an utter joy. Most people comment on his smarts, politeness and his easy-going nature, whilst other people (specifically his mother) comment on his disorganisation, eye-rolling and distaste for vegetables. But he is a good kid with a cracking sense of humour, who is growing into the sort of person you’d genuinely like to hang out with, and that makes me incredibly happy.

He was four when I was diagnosed with breast cancer and will soon turn 10. He doesn’t talk about my illness, and to the naked eye would appear to be completely unscathed by it. Then, yesterday, his teacher sends home his English assessment – the first chapter of a fantasy novel. It’s really good – interesting, well-written and punctuated within an inch of its life (apple meet tree). I start reading it and my heart starts filling up, for I do love words and images and the power of story-telling. And then, bang, I’m hit and can’t catch my breath and suddenly need to lean against the kitchen bench as my eyes trace over and over these words:

Hugh story

Cancer is a bastard. It is insidious, inveigling, and continues to whisper its own name, over and over, into the ears of people with whom it has no business. I had forgotten that for a while, but have been roundly and soundly reminded.

It’s a long game.

A very fucking long game.

Where Am I? Where I Am.

It’s been two months since I posted here. First there was Christmas, then the fog of days that run over each other between Christmas and New Year, and then I was back to work on January 2. I have a new job, and whilst I don’t talk about my professional life in any detail here, I can say that it is crazily busy, incredibly challenging, and entirely life-affirming. I had forgotten how good I can be under pressure: thinking fast, scanning, deciding, knowing my stuff. I had also forgotten how it feels to feel unsure of myself, to have the flicker of ‘but I’m just the daughter of blue-collar workers who didn’t graduate high school and who didn’t know inside toilets existed until I visited a neighbour’s house when I was 7’ run through my mind when I am given sole responsibility for an incredibly important project. That fleeting flicker of doubt isn’t a wholly bad thing, as it makes me stop and recognise that I am who I am, because of where I came from, not in spite of it.

I am that girl from a poor family, with parents working casual jobs and a father with a gambling problem, living in a run-down rented house with an outside toilet and no power points in my bedroom which was actually a converted verandah.

I am that bright kid at the state school whose Mum spent money she didn’t have buying me project kits at the newsagent so I could do my lecturette about the Egyptians and get an A+.

I am the high schooler who got her poetry published in an actual book but whose Mum and Dad couldn’t come to the launch because they were casual workers who had to work.

I am that regional university student who had the marks to get into the fanciest of fancy sandstone city universities, but who didn’t even contemplate applying because a free pre-HECS higher education gotten whilst living at home was what I had coming to me.

I am that graduate, then postgraduate with a talent for teaching others who became an academic at that same regional university. I am that young woman earning more money than my parents could ever have imagined, working in a place they could not understand, talking and writing about things that are irrelevant when you have spent your life living on the bones of your arse.

I am that woman who worked her way up through administration and management, and who is nearing 50 and sitting in a big office with an original painting on the wall done by Charles Blackman, whose Alice in Wonderland series was the subject of one of my undergraduate university essays, written on a second-hand typewriter with an overhead light powered by an extension lead from another room.

I am also wife, mother, daughter, sister, aunt, friend, foe and she of the single remaining breast.

I am all that. Right here, where I am.

 

2017 In Review

2017 went a little something like this:

Hugh broken arm.

Cat bitten by brown snake.

Julie broken arm.

Julie arm surgery.

Mum almost dies.

Hugh second broken arm.

Dog tears ACL.

Done.

In between all of the shit and disaster, were moments of absolute delight and phenomenally good news, specifically:

Mum recovered.

I was declared five-years cancer free, taken off my hideous medication and discharged by my oncologist.

Those two things go a very long way towards redeeming 2017. I will probably still kick it in the goolies, but maybe not quite as hard.

Actually, now that I think about it, there were many other highlights. I was interviewed for the Her Words Series and I won a Queensland Writers Centre competition and had my 8 word story published on electronic billboards across Brisbane and the Gold Coast. Dave turned 50 and was surprised with the gift of a trip to Nepal to climb to Everest Base Camp in April next year. Hugh thrived at school and achieved in the top 10% in Australia in a spelling exam, and developed an interest in soccer (despite it being the cause of his second broken arm). The cat didn’t die (much to Dave’s disappointment) and my beautiful old dog Roy has almost fully recovered from his ACL repair surgery. He and Mum have struck up the most beautiful friendship since he’s been staying with her, and he has gone from being my cancer dog to her heart dog. I got to meet a couple of my lovely readers (including the fabulous Kay – hi Kay!), and spent face-to-face time with several of my online friends, as well as my fabulous real life friends. Speaking of whom, we finally achieved marriage equality in this country. Of course none of my bloody gay friends actually want to get married which sucks because to paraphrase Muriel, I wanna be a bridesmaid!

And now, here we are, just a few days before Christmas, with the end of the year looming. This is my favourite time of the year; everything that was and wasn’t is behind us, and everything that is possible is still to come. We have boy who, really, truly and quite magically, still believes in Santa, so the sense of anticipation is palpable, despite this being his 9th Christmas.

Baby Hugh Christmas

To all of you who have read my posts this year, chatted with me on Facebook and email and Instagram and Twitter, thank you. You’ve given me both an ear and a voice, and I continue to be amazed by the power of all my imaginary Internet friends.

Merry Christmas, and here’s to a 2018 where bones, hearts and pets remain intact, and family and friends remain.

Cheers.

 

 

Breaking Up is Hard to Do

On October 10, my oncologist broke up with me after five years. It wasn’t him, it wasn’t me, it was NED. Thank God for NED – full name Nil Evidence of Disease – for coming between us. As nice as my oncologist is, that relationship was going nowhere.

While I’d been sitting waiting for my appointment to see the good doctor, I’d come across the Queensland Writers Centre #8WordStory competition on Twitter. As the hashtag would suggest, the challenge was to tell a story via Twitter using only eight words. The best entries – as judged by writers such as Nick Earls and Benjamin Law – would be published on electronic billboards on major roads in Brisbane and the Gold Coast.

After my doctor told me about NED, I knew immediately what my story would be. I sat in my car in the cancer unit car park and tapped out my entry, and four weeks later I got a message telling me that from over 6,000 entries, mine had been picked for publication! Here’s my story in its electronic glory on the Inner City Bypass at Bowen Hills in Brisbane:

8wordstory

Coinciding with my final oncologist appointment, was his decision to take me off the dreaded Anastrozole. This drug provides a 25% increase in survival in the first 5 years post-diagnosis, but it has the most hideous side-effects, the key one for me in the end being osteoporosis which caused my arm to be smashed into tiny pieces after a minor fall in April this year, resulting in major surgery to turn my limb into Frankenarm.

I had hated Anastrozole with a passion for nigh-on five years, but the moment my oncologist told me I could stop taking it, I was worried. Since the day of my mastectomy in 2012, I have been having some sort of treatment for cancer. Was Anastrozole the only thing keeping it at bay? Wouldn’t it be better to keep taking it just in case? Surely I could just wear my bubble-wrap outfit forever to keep my bones in one piece.

bubble wrap

And you thought I was joking about having a bubble-wrap outfit.

But as part of his final pep talk, my oncologist told me that Anastrozole had done its job, and could do no more. ‘You do not need a security blanket, Julie.’ where his exact words. And like he had been about so many things – ‘Yes, we are giving you enough chemotherapy, not everyone gets the vomits’ – he was right. I don’t need a security blanket. I need to move on, carefully gather my fragile bones, and get the fuck on with life completely outside the hideous but reassuring grip of cancer treatment.

That doesn’t mean I will (or could) forget about cancer. Thanks to those of you who donated online, plus my ever-generous work colleagues, we raised over $800 for the National Breast Cancer Foundation, who will put this money directly into research. With donations like ours, a cure will one day be found and this blog and its tales of cancer will become like the Egyptian pyramid texts – so completely other-wordly that they will need a specialist to decipher them. Especially the sweary bits.

Dying to Live: Metastatic Breast Cancer

Today is Metastatic Breast Cancer Awareness Day. Metastatic breast cancer is when cancer cells have spread from the original cancer site in the breast to more distant parts of the body. Terms such as advanced breast cancer, secondary breast cancer, secondary cancers, metastases and secondaries are all different ways of describing metastatic breast cancer, but they all mean the same thing.

There is no cure for metastatic breast cancer, but fundraising this October by the various breast cancer organisations will go towards much-needed research into new treatments, and a possible cure. My love and respect goes out today to those living with this bastard disease, including my beautiful friend Rochelle, who has allowed me to share her story.

I don’t talk much about my cancer. It’s something I choose not to dwell on. When I do mention things, I get private messages from people saying that they didn’t realise I was still sick, sick again, or sick at all. So as part of Breast Cancer Awareness month, and in particular with today being Metastatic Breast Cancer Awareness Day, I find it fitting that I put this out there today.

I am living with Metastatic Breast Cancer. If you’re not sure what ‘Metastatic’ is, it means my cancer has spread from the initial point to other parts of my body. This can also be referred to as secondary or advanced. Call it what you like, it’s incurable. It is terminal.

7 years ago I was diagnosed with Breast Cancer. I was a 27 year old, with an almost 1 year old. Life changed. After surgeries, chemo and radiation I was given the clear and tried to get back to ‘normal’. We had another baby. Then 4 years ago, the day before my second son’s first birthday, they told me the cancer was back. They told me it had adhered to my sternum but during surgery they tried to scrape as much of it away as they could. They gave me chemo to mop up anything left. The chances of it spreading were almost guaranteed but they believed we had caught it early enough to give me a good amount of time before it would show up anywhere else. 12 months later it was in my bones and my lungs. Now it is also in my liver.

I am 34, trying to raise my sons as normally as possible, yet I do this every day with the knowledge that our life is anything but normal. I have had more surgeries, chemo, complications, blood tests, appointments and medications than I care to recall. And I am dying. I am realistic about this, I am not in denial. It is what it is. That doesn’t mean I don’t have hope. I have hope new drugs will be found to keep me here a bit longer. I have hope that research and technology with reduce this suffering for others in the future. And I have hope that my children will grow into amazing, productive, kind, happy men.

You can help by educating yourselves, donating and raising money for research and support services for those in need. Provide physical and practical help for those fighting and their families. Make food, fold their washing, help with their kids, take them to appointments, and just spend time with them!

Not just for breast cancer but all cancers.

rochelle

#fuckcancer

If you want to help my funny, smart, fabulous (and not to mention hot, I mean c’mon have a look at her!) friend and thousands of other people in her situation, please consider making a donation to fund research.

Options for donating:

Cancer Council NSW (where Rochelle lives): https://www.cancercouncil.com.au/ways-to-donate/

My fundraising site (all funds go to metastatic breast cancer research): https://pinkribbonbreakfast.gofundraise.com.au/page/JulieShinners0

 

 

High Five!

Five years ago, I was, entirely without my permission, parachuted (minus the parachute) into Cancer Land.

Shit place to visit, nobody lives there.

Today, I got asked to leave. Unceremoniously told that my presence is no longer required.

I really, really want to write an eloquent post about how this feels (And then have it shared a million times by people who then tell me I’m an inspiration. Because if there’s one thing that’s great about having survived cancer, it’s being an inspiration to those who have won the health lottery and have been lucky enough not to get it. )

Instead, I sit here in shock. Five years ago I was told I had less than 50% chance of being alive enough to sit here in shock . But here I sit, having just seen my oncologist, to be told my results are again all clear, and as such he is discharging me from his care.

I asked him to be in a selfie with me to mark the occasion. He said he wished he’d worn a tie, and I said not to worry I’d photoshop one in.

Dr Vasey.png

I lied. Sorry Dr Vasey, I don’t know how to photoshop stuff in or out, and if I did my priority wouldn’t be your tie, it’d be reinstating your forehead and fixing my crazy, crazy eyes.

Seriously though, how good do I look as someone excitedly on the verge of tears because five years passed by and my oncologist broke up with me?

There is no cure for cancer, but for me, today, there is complete remission with NED – Nil Evidence of Disease.

That’ll do pig, that’ll do.

 

 

 

Vulnerability

Earlier this year, I was asked by the her words team if I would be part of their interview series. At the time, I really didn’t know what they wanted to talk to me about, but I knew they’d read my blog so wouldn’t expect me to talk about rainbows and unicorns, so I jumped at the chance to have a chat in front of the camera. I’ve never met a public speaking opportunity I didn’t like. Same goes for cake.

The interview took place in Melbourne, on a ridiculously hot summer’s day in a trendy inner-city warehouse apartment that made me feel like the sweating rather than glowing middle-aged suburbanite that I am. The women from her words are quite amazing –  earnest, smart, and driven to help women of all sorts to tell their stories. They also managed to film me so I don’t look sweaty, for which they get copious bonus points.

My interview took place over a couple of hours, and I think the fact that the interviewer and production staff were all incredibly young and enthusiastic made me feel more determined than ever to tell my story. As a young woman in my 20s, I didn’t have the confidence I needed to feel comfortable wanting to build my career when mostly everyone else was marrying and having children. Instead, I  built a facade of not giving a damn, whilst secretly yearning to be just like everyone else. In many ways, I was walking on a treadmill, always moving but never actually getting anywhere. I did things – bought a house, travelled a bit, built my career – but I never knew why or to what end. It has only been in the last five years that I have realised that opening up about who I am and how I feel means that I no longer yearn for anything (other than a cure for cancer, a couple more kids and a Snickers bar every now and then.)

The theme of my interview was vulnerability. Losing  four babies and then getting cancer in the space of just a few years made me incredibly vulnerable, but at the time I didn’t openly acknowledge that, and instead tried to persist with my facade. If I didn’t look at the words ‘Cancer Centre’ on the side of the building I went to for chemo, then I could go through eight months of treatment without shedding a tear. If I pretended to be happy, relieved even, to only have one child, then I could tough out conversations about my small family. If I could pretend my heart was hard, then I could get through all this unscathed. Except, of course, for all the scars.

Then I started writing this blog, growing gradually more game to reveal my feelings to the anonymity of the Internet. But the Internet is far from anonymous, especially when you post photos of yourself without your top on, but quite remarkably instead of people judging me for telling my truths, they joined in, telling me theirs, letting me know that I was far from alone. And so it began, a kind of mid-life rebirth of the non-hippy kind, with me learning one of the greatest lessons of my life – that by opening ourselves up to others, we open ourselves up to ourselves.

A couple of months after this interview was recorded, I broke my arm in six places, and learned that extreme physical pain, pain that cannot be accurately expressed in words, tears a hole in your soul and lets everything pour out. I was no longer the acquiescent patient, smiling my way through chemo like some balding nut-job. I was broken, smashed and wailing. The level of vulnerability I felt then, and at certain moments still, was acutely terrifying, and caused what the doctors call situational depression and post-traumatic anxiety. It is hard for me to write that down here, pains me to show you that new vulnerability, but bugger it, I am here tell my truth. I broke my arm and it kind of broke me, but I am being treated, being mindful, going easy, and am thankfully feeling good again.

So here is my interview with her words. The bitchy resting face sure gets a good showing, and my husband things I sound a little bit like Judith Lucy (which in my books is not a bad thing), and I’m proud as punch of myself. Oh and I did actually talk about unicorns …

Ask My Mum

It was my birthday yesterday. I nailed it as far as birthdays go, making myself a brown butter cake with lemon curd and white chocolate cream, scoring some awesome presents, and going out for Chinese for dinner where I completely dominated a plate of honey king prawns. I did offer them around the table, but my friends and family aren’t stupid.

At the restaurant, I sat across from my 81 year old Mum. She nearly died about a month ago, but there she was, tucking in with gusto to satay chicken, beef and black bean and fried rice. As I looked over at her smiling face, I was taken back to the critical care ward, where my brother and I sat and listened while the specialist consultant spoke to Mum about her end of life wishes. She’d had a minor heart attack initially, but had a rare reaction to one of the standard drugs used to treat it, and had gone into acute kidney failure. Her body was shutting down, blood pressure getting lower and lower, breath gasping despite the oxygen mask, skin waxy white. Her eyes were closed, but she heard every word he said, and confirmed what we already knew. She did not want to be resuscitated, or kept alive by machines. If things were at an end, she would go on her own terms.

The consultant told us later, out of Mum’s earshot, that he thought she would only live another couple of days. We stayed by her bed, alternating breaks for coffee and loo, regularly joined by family and friends who had come to say goodbye.

That night, my brother asleep in our spare room, we waited for the dreaded phone call to come, like it had when Dad died. But it didn’t, and that morning when we arrived at the hospital Mum was sitting up on the side of the bed, and then moved to sit in a chair. She hadn’t eaten for days, but suddenly decided she wanted a vanilla ice-cream in a cone. I sent my brother to fetch it (pulling the little sister with a broken shoulder card because it was cold outside) and when he came back with a Cornetto, Mum proceeded to eat it in about five bites. Anyone who knows my mother knows she is not a fan of sweet things and watches her diet like a hawk, so we were both amused and bemused. Someone told us that those who are dying often seem to rally just before they pass, so we thought that perhaps this was Mum’s final hurrah.

But it wasn’t. Gradually, she got better. Her kidney function improved and rapidly returned to almost normal, her blood pressure normalised and they weaned her off the oxygen. And as she left critical care for the general ward, she gave the consultant a hot tip, and recommended he introduce Cornetto therapy to all his patients.

After dinner last night, my Mum gave me a birthday card, and I went a bit misty-eyed when I read the front:

card-1.jpg

And then I pissed myself laughing when I read what was inside:

card-2.jpg

I am regularly asked how I am able to laugh in the face of really tough stuff. And I always say, you should probably ask my Mum.

When Love is Judged

It’s been almost two and a half years since I published this post about same-sex marriage. The post went viral, shared hundreds of thousands of times both in Australia and overseas, and you know what the most remarkable thing was? Not one person, not one, commented or emailed or tweeted or messaged to say they disagreed with same sex marriage. Each time a media outlet in Australia commissions a poll about same sex marriage, the results are overwhelmingly in favour, but still, here we are, caught in a mire of filthy, stinking political bullshit.

Some really terrible things have happened to me and my family this year. Hugh broke his wrist on New Year’s Day, and it all seemed to go downhill from there with my accident and resultant periods of hospitalisation, surgery and long, slow recovery. Then my Mum recently became seriously ill, and I felt the weight of the world pressing right down on top of me. But I have been absolutely blessed by the support of dear friends, in particular Shauna and Duane. They have both been there every step of the way this year, making sure Dave and Hugh and I are OK, offering reassurance, providing a listening ear and a reassuring hug through many awful days and even more awful nights.

As it happens, these two friends of mine are in same sex relationships (obviously not with each other, because that would make no sense). I feel absolutely SICK at the thought of this debate about marriage equality having a negative impact on them and their families. Love is love. Love for friends, love for family, love for partner, love for kids – every individual’s experience is unique, but in essence the same, because we are all human. I don’t love anyone better, or more meaningfully, or with any more passion because I’m a heterosexual human, and I don’t deserve any more rights than anyone else just because I was born this way.

People – my friends, people I love, people I don’t know, men, women, children – are being hurt by these debates about how they live their lives, discussions about which rights they are deserving of and which they are not, public statements so ignorant they be laughable if they were not so hateful.

Duane is strong, confident, outgoing and comfortable in his own skin. And since I have known him, he has kind of pushed on through this whole marriage equality debacle, water off a ducks back and all that. Except late last night, the water having turned into a tidal wave and his duck drowning not waving, Duane posted this on Facebook, and has given me permission to republish it here.

This is going to be my last post on the topic of marriage equality before I disengage completely from the discussion. And it’s going to be rambling and prickly as finally, I’ve had enough. I am exposing some vulnerability here (which doesn’t happen that often at my age!) by admitting that this decade of public discussion, and specifically the last few years of ‘the Australian people have a right to vote’ on the validity of my personal life, does make me feel humiliated as a person. Yep, it does.

To be clear, I’m not ashamed – not at all, I love my life and who I am. But I am constantly humiliated that something which is personal and private has become so politicized and pushed into the public arena. How did we get to a point where our entire country is being asked to (and some are demanding a right to) vote on my personal life? Without even trying, every day I hear and read all manner of comments about my private life and people’s opinions on it. And it all serves to remind me that this LNP government, and the Labor government before that, and the LNP government before that have made direct decisions which have led us to this point – a point where it seems to have become ok that my private life be open to scrutiny, judgement and commentary – and as a country we’ve let this happen.

That is what Australia has become. It’s scary and repulsive. Stop and ask yourself how violated you would feel if an element of your private life became a daily news piece for a decade – and even worse, that your government decided the whole country should vote on it. It actually does my fucking head in. And for all the back patting and congratulations that will no doubt go on in Canberra when this does eventually become law, I for one won’t forget how the last few governments have made me feel, which will make any kind of result bittersweet.

So please, if this all goes ahead make sure you are enrolled, cast your vote on my private life, do it with love – and reflect on how truly offensive it is that you are being asked to do so, and remember that feeling next election day. It goes without saying – if you vote no, we no longer have anything to talk about. Ever. Immediate unfriending. I’d say sorry for being cranky, but right now I just feel like saying fuck you. More importantly though, I do want to say thank you infinity to the many people in my life, and in the world, who make me forget about all of this ridiculousness – sincerely, thank you.

The main reason I can’t keep engaging on this topic is because, unexpectedly, thinking about this whole concept and the pressure of having your country judge and vote on your life brings back a flood of memories of homophobia across my life, and I spontaneously cry! I’m an emotionally stable person, and J and I are in a stable relationship, and it makes me worry for those other people out there in the same situation who don’t have this stability and support. So I will ask, if you do know any other gay people, reach out and check they are OK, please.

Pleasure and Pain

It has occurred to me that, almost always, any experience of true pleasure is always mediated by pain of some sort. 

My pleasure right now is gotten from the fact that my Mum has moved into her new (old) house.  She is happy as a clam, back in familiar territory with her dear neighbours around her, but in a beautiful renovated home. 

Before and after of the kitchen:


The house is unrecognisable, but the place as familiar as her own skin. She has risen to the challenge of learning to live in an almost new home, and has finally, after significant encouragement from my brother and I, started spending some of the money she got from the sale of the house. Mum grew up poor, and has never had money, so buying things simply because you like them is an utterly foreign concept to her. It has been a lesson in humility for me to watch her struggle with whether she should really by $150 worth of new pots and plants for her garden because ‘it is just so frivolous’ whilst knowing that I have eaten single dinners that have cost more.

Impacting on this pleasure has been the pain of my shattered arm, which after 11 weeks had not healed and resulted in surgery last week. 

Behold, Frankenarm!


I am doing well, the pain is controlled, and I have considerably more movement already than I’ve had since I broke it in April. But all the things I want to do, like drop into Mum’s for a coffee on the new back deck, or take her shopping for new linen, just aren’t possible right now, and it’s bloody annoying. I’m still feeling pleased, it would be impossible not to, but it’s just not exactly how I’d imagined.

Oh life, you saucy minx. Pleasure and pain, joy and sorrow, blogging one-handed.