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.




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:


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.

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.




Treat Me, Not (Just) My Cancer

breast cancer awareness month

The final guest post for Breast Cancer Awareness Month is written by Eliza, who became a friend after I read about her in the newspaper and made contact (in a non-stalkerish kind of way!). Eliza is a biomedical research scientist who put her skills as a researcher into action in a very personal way when she was diagnosed with breast cancer at 28 years of age. This is her story.

I remember the day that my life changed forever, but not the exact date….it was a Friday afternoon in July 2002. I was home with my two-year old darling son (DS), recovering from the breast lumpectomy that I had three days prior. My darling husband (DH) came home for lunch and asked me if I’d heard from the surgeon regarding the pathology of ‘the lump’. I replied that if it were anything nasty, I would have heard and I hadn’t. He insisted that I contact the surgeon’s rooms while he was home. I did. Life changing phone call……

I’m really sorry but you have breast cancer, quite aggressive and advanced… require immediate surgery….removal of the entire breast and underlying muscle, all of the lymph nodes under your armpit and above the breast, you should seriously consider having your ovaries removed at the same time because your cancer is highly responsive to hormones….. you will need chemotherapy and radiation……., bone scans, CT scans……it is most likely to have spread…..’

NO THIS CAN’T BE HAPPENING…..we are planning another baby….I’m too young…

I had initially found a lump in my right breast in January 2002. I monitored the size of the lump for a little over a month to ensure that it wasn’t simply a hormonally responsive cyst or other innocuous tissue. I went to the GP, we monitored for another month, then I had an ultrasound. Nothing to worry about  – five benign (not cancer) masses that presented as fibroadenoma and a cyst ….largest ~2cm. I had no family history of breast cancer, I was 28, I’d breast fed my son for 12 months… only ‘risk factor’ was that I was female. Recommendation was to continue to monitor and return if anything changed.

Well, I was too busy to get a second opinion and didn’t care for a different opinion anyway – benign lumps suited me just fine. It was only at the insistence of my DH and prompting by my dear friend (and offer to mind our DS) that I had another ultrasound in June. This time the finding was ten masses, the largest ~5cm and a blood supply evident in several of the masses. Angiogenesis (the formation of blood vessels) is a hallmark of cancer. This worried me, however the breast surgeon did not seem concerned. We pretty much insisted on the lumpectomy ‘just to be sure’. The surgeon’s expert opinion was that he was 99.9% sure that it was not cancer so the lumpectomy surgery was booked for a few weeks later.

Fast forward to the Tuesday after that phone call. The breast surgeon was so sure that it was not cancer that he was going on holidays for six weeks on the Saturday so we had to see another surgeon on Monday who booked the surgery for 7am the next day. This was the first of more than ten separate surgeries over the next 18 months….

So back to the title of my story – treat me, not (just) my cancer. Breast cancer incidence is highest in women over 50 so all of the survival statistics and long-term side effects related to treatments have been largely determined using this age group. Most chemotherapy regimens and of course removal of the ovaries will lead to early menopause. Although this is an awful side effect for a woman in her 40s or 50s, it can be devastating for a younger woman and her partner who want to have children in the future.

Thankfully the landscape around fertility concerns of younger women with cancer has changed quite a bit since I was diagnosed and actually some of it has been led by one of my medical oncologists. For me, it was a struggle to get my medical team to understand my perspective. Of course I wanted to survive and I would do everything that I could to increase my chances of survival however I also wanted to explore other treatments that would eradicate the cancer AND preserve my fertility AND not impact too much on my long-term quality of life. DH convinced me to research other treatments and ensure that I was comfortable with our path forward.

Thankfully I found a very caring medical oncologist who was part of an international clinical trial that was comparing the gold standard chemo drugs for BC (infertility-causing) with a new combination of chemotherapy drugs (Carboplatin, Taxotere and Herceptin) that was less likely to cause infertility in someone my age. I enrolled in the trial. I said no to the ovary surgery. Six cycles of C and T, six months of weekly H followed by six months of H every three weeks. After 12 months of chemo, several more surgeries (including a mastectomy of my left breast), my scans were clear however the next step was radiation therapy – five days a week for five weeks.  My mastectomy surgery had left me with a thin layer of tissue covering my ribs and my research of the medical literature led me to conclude that the risks of radiation to my chest wall outweighed any benefit, that is, preventing a local recurrence of breast cancer (it was highly unlikely that I had any breast tissue remaining).

I said no to radiation therapy.

Unfortunately my medical team were not used to patients saying ‘no’ so numerous oncologists tried to convince me (and my family) to have the treatment. With the support of DH, I stuck to my decision.

The next recommended treatment was five years of Tamoxifen hormonal therapy but whilst taking this drug I would have to defer my dream of becoming pregnant. There was very little data on the safety, long-term side effects and survivorship outcomes of someone in my age group taking Tamoxifen.

So I said no to Tamoxifen……again arguments with the medical team but with the support of DH, I stuck to my decision.

Fast forward two years and my dream came true. I fell pregnant and our beautiful daughter came into the world.

I have been deemed cancer-free for 11 years now. At times it has been really scary to take the path less-followed however I feel that I am solely responsible for my decisions regarding my treatment. For me, I needed to consider the whole of me not just the fight against the cancer. I wanted to ensure that I could enjoy long-term quality of life and always, always believe that ‘long-term’ was in my future.

Eliza and her gorgeous daughter today.

Eliza and her gorgeous daughter today.