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.

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.


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.




The Blame Game

I made the mistake last night of getting involved in a Facebook thread on my local newspaper’s website. They’d posted a link to this opinion piece, where the writer talks about how offensive it is to be told that diet and healthy living can cure cancer. By the time my husband drew my attention to the thread, all sorts of crazy had been unleashed in the comments, with talk of big pharma conspiring to not cure cancer so they could continue to make money from selling chemo drugs, anti-perspirants causing cancer and positive thinking being the key to a cure, all with a bit of God bless you action thrown in for good measure.

I went into that thread, and I posted about how my remission had been achieved via a range of medical interventions. I noted that healthy eating and living sensibly (ie not drinking or smoking) likely made my treatment a bit easier, because introducing unnecessary toxins into the body when it’s being hammered by chemotherapy would not be a smart thing to do. I thought that posting a reasonable, sensible response from someone who’d actually done the hard yards of cancer might put a lid on some of the ridiculousness, and perhaps encourage some factual debate, but obviously I was being very naive. It deteriorated pretty rapidly overnight, and this morning I felt the anger rising inside of me as I read about freedom of speech and how everyone is entitled to their opinion.

Freedom of speech, or more precisely freedom of expression, is the right to express your opinion without fear of censorship or retribution. Freedom of expression does not mean you can say what you like without being questioned, without being asked to provide evidence to support your opinions, or without having your opinions proven to be incorrect. Freedom of expression does entitle you to say that eating organic fruit and vegetables will prevent cancer, but it does not make you correct. Freedom of expression does give you the right to say that positive thinking will help cancer to go into remission, but it does not make what you say right. Freedom of expression may be a right, but it should be treated as a privilege, and used with consideration for how it may impact on others.

Opinions, theories, ideas and anecdata about cancer are dressed up in many ways and presented as fact. I have been asked lots of times since my diagnosis in 2012 about whether I’m now eating all organic food, or doing juices. I’ve been asked about my exercise regime, my sleep habits, and whether I’ve given up alcohol. I’ve been told about news bulletins about how too much dairy might cause cancer, and others about how not enough diary might cause cancer. I’ve been sent links to articles about the power of positive thinking, and how to reduce stress, and the benefits of yoga.

Mostly, all of this has been done with good intentions; I’m a likeable enough person and people don’t want to see me die of cancer, which is nice. I get that, I really do. But by suggesting how I might change my life so that breast cancer doesn’t come a-knockin’ again, you are suggesting that the way I was living in the months and years preceding my diagnosis in October 2012 caused the cancer in the first place. You are blaming me, the victim, for bringing it on myself. And that is utterly offensive.

When I first met with my medical oncologist in November 2012, we had the sort of conversation that no-one ever envisages themselves having. I was sitting next to my husband; thankfully our four-year old was at daycare. We went through my brief history of breast cancer to that point. I’d had a mastectomy and axilla (lymph node) removal five weeks earlier, with the subsequent pathology results indicating that my cancer was enormously unpredictable and rampantly aggressive. I’d had scans which had shown that somehow, by some unfathomable fortune, it had not yet spread into other organs, and could therefore be treated. The medical oncologist asked me many questions – about smoking, family history, alcohol consumption, gynaecological and obstetric records, breastfeeding, possible chemical exposure – all the while taking detailed notes. He then put his pen down, looked me square in the eye, and said ‘You know what? Sometimes shit just happens.’

And that’s the thing, isn’t it – the thing that everyone’s afraid of? That notion that shit just happens, without reason or explanation, to good, decent people who are just going about their lives, terrorises all of us. But for those of us living with, through and beyond cancer, it’s more than a notion, more than a bogey-man hiding under the bed that’ll be gone when we turn the light on. Shit happened to me, for real. On that day in 2012, the medical oncologist told me that my chance of still being alive in five years was 50%. Today, my chance of still being alive in 2017 is still 50%. Shit actually happened to me, and the residue is sticky and stinky and hideously unpalatable. So when someone tells me that to keep the cancer from recurring I should think positively, or eat kale, or do yoga, it unleashes a fury inside of me like nothing else.

What would happen if I did go on a completely organic, vegan diet, quit my job to avoid the stresses it brings, and move to the country to spend my days meditating and doing yoga, and the cancer still came back? Would people take back all their suggestions and ideas, apologise to me for suggesting that I wasn’t doing enough to keep myself alive and well, and rethink their presumption that illness and disease are always able to be controlled by the force of human will? Or would people publicly lament my cancer with platitudes about being brave and inspirational, whilst privately thinking that I hadn’t done enough, or soon enough, or properly?

As it happens, I do use a number of complementary therapies and treatments to assist in managing the side-effects of my ongoing cancer treatment, and to help keep me as well as I can be, despite the challenges I face. I see a chiropractor, have acupuncture, and regularly take turmeric and fish oil amongst other things. I do all of these things in close consultation with my oncologist, who is the only person I judge as being qualified to advise me on what may, or may not, be of benefit to me. I am the one who will live, or die, by the choices that my doctor and I make, and as such they are intensely private and should not be open for discussion. One person’s right to speak freely does not trump another’s fervent wish to be free from judgement and blame about something which is, terrifyingly, totally out of their control.

Five Things I Hate About Cancer

Today I had to pick up a prescription at the cancer centre at the hospital where I was treated. Walking into that place, almost a year since my last day of treatment, brought it all rushing back. I actually had to take a couple of deep breaths and physically steel myself to walk up the stairs and go into the waiting room. At 12:15 on a Wednesday afternoon a couple of days before Easter, it was standing room only in there. It is not a small waiting room. So many people sitting silently, apart from an ocassional cough, waiting to do whatever they are told that they have to do. Despite what the cheesy telemovies would have you believe, oncology waiting rooms are not (in my experience at least) full of jovial head-scarf wearers who are firing up for another 12 rounds where they will no doubt triumph over nasty old cancer. People sit silently, avoid eye contact with each other, and jump like startled rabbits when their name is called.

Going back there today, combined with some very sad news about a family friend, has reminded me about how much I hate cancer. There are many, many reasons, but in the spirit of a man who looks like he’s wearing a bad wig even though it’s his own hair, I’ve limited this post to listing my Richard Wilkins-style top 5:

1. Being asked by my 4 year old if I was going to die

We did our best to protect our son from the worst of my diagnosis and treatment, and certainly we never discussed death or dying with him. But children are of course incredibly perceptive, although I didn’t realise quite how perceptive until one night when I was in the middle of chemo. I was putting my boy to bed, and after we’d read a story and I was adjusting his blankets, he stared at me thoughtfully for a while, and then said ‘Mummy, are you going to die? Because if you die, then it will just be Daddy and me’.

2. Filling in forms

Insurance forms which ask you to tick the box if your cancer is terminal and you’re likely to be dead within the next 12 months are a special kind of torture to the cancer patient. No, I am not terminal at this point in time, so I’ll tick the other box. Well now you’ve ticked the other box, we’re going to need a letter from your doctor telling us what % chance you have of still being alive in five years time. Thank you, oh faceless insurance actuary so much for the reminder, I’d almost forgotten how completely shit this whole situation was and will continue to be.

3. Seeing every event as a possible ‘last’

Will this Christmas where I’m bald and too fatigued to even wrap a single present be my last? Should I throw my kid a huge birthday party this year like I did last year because what if there’s no next year? New York for my 50th birthday, or this year even though we can’t afford it because I might not make it to 50. Living in the now never felt so bloody awful.

4. Having no tolerance for bullshit

Anxious and upset about having to move from your current office to a very similar one on a different floor of the same building? Get a real fucking problem and get back to me. As I wrote this one, I suddenly thought, is this actually a thing to hate or a thing to love about cancer?

5. Knowing no doctor will ever again say to you ‘you’re going to be fine’

When I was diagnosed, I just wanted a doctor, any doctor, to say those magic words. Of course none of them did, and they never will again. As a result, I imagine EVERY SINGLE ache, pain, cough, twinge, lump or bump is the cancer coming back to finally take me out. It can be so tiring. (Oh, and then I start imaging that the tiredness is the cancer coming back).

Richard Wilkins

But on the upside, he looks worse with his own hair than I did bald.

Cancer people, what’s on your list? Non-cancer people, what do you reckon about number 4 on my list? Has cancer turned me into a nasty bitch, or someone you’d like to have a drink with?