Month: March 2015

The First Time

A year ago today, my writing was published for the very first time on the Internet – that is, if you don’t count Facebook status updates about my kid, my dog, and my dinner. At that point I hadn’t yet taken the plunge and started my own blog, so my story about how funny cancer can be was published by the fabulous Woogsworld. The reaction I received to that post was the final impetus I needed to take the plunge for myself, so I thought it appropriate to republish the post here today, to mark the anniversary of the loss of my Internet virginity. (I am now concerned that someone who searches ‘loss of my Internet virginity’ is going to be directed to my blog, and be very disappointed.)

When Tragedy Meets Comedy

I recently read an article here about a study done by researchers in the US, which essentially showed that it takes 36 days after a tragedy for jokes about that tragedy to become funny. To clarify, we’re talking about large-scale tragedies like Hurricane Sandy in the US, and not your five year old missing an episode of the Octonauts (although the fallout from that can be quite terrifying). Apparently, if you try a one liner on days 1- 35 post-tragedy you’ll be met with stony silence, but come day 36 you’ll have them laughing in the aisles.

This article made me think about the issue on a smaller scale, and my own responses to personal tragedy. I deal with most difficult situations with a big dash of humour – a psychologist might say it’s because I’m an emotional cripple who uses humour to push down those uncomfortable feelings, but I like to think that I was born with a glass half full kind of attitude which helps when you are wading through the waist-deep shit that life sometimes throws at you.

The past ten years of my life have seen the highest of the highs, and the lowest of the lows. Highs like marrying the best person I’ve ever met and giving birth to our healthy son. Lows like having four miscarriages, the last of which saw me on the floor bleeding and alone in the toilets at my workplace. To be frank, there is no humour in the personal tragedy that is miscarriage, whether it be 36 or 365 days later. But I’ve since faced what I hope is the biggest challenge of my life (because seriously if shit gets any bigger than this, it’s all over rover), which I guess fits the bill as a personal tragedy, and to be honest it’s been the source of some real belly laughs.

In October 2012 I was diagnosed with cancer. I was 42 and healthy as a horse. I’d found a lump in my breast, immediately gone to the GP who said ‘oh I don’t think it’s anything to worry about’ (famous last words right there), followed by scans, two biopsies (first one was inconclusive) and then the earth-shattering phone call two days later. Not only did I have breast cancer, but a very aggressive type which had already spread into my lymph nodes. They cut my right breast off the next day, as well as removing 16 lymph nodes. When I received the pathology report in hospital, it noted that the removed breast had weighed 1.5kg. I asked the oncologist if he thought I could legitimately claim that as a loss at my next Weight Watchers meeting, and quickly discovered that whilst I might not subscribe to the 36 day rule, he sure did.

Chemotherapy is not funny, until it is. One particular day my drug regime was changed. Due to common allergic reactions from one of my new drugs, I was given an infusion of a powerful antihistamine drug through my drip before the chemo drug. The nurse administering the drugs failed to mention that I’d be having the antihistamine, and if she had I might have told her that I can have odd reactions to many common medications, particularly antihistamines. But she didn’t, so as the drug started pumping through my veins, I started hallucinating in the most spectacular way, at which point I pronounced very loudly to the entire chemo ward that ‘this shit is good’. Apparently my speech was so slurred that my friend who had accompanied me to chemo for moral support thought I was having a stroke, and at that point bashed long and hard on the red emergency button. In my drug-addled haze I started laughing hysterically to the point that I was braying and snorting like a donkey, and once the medical staff worked out what was going on, they all joined in the laughter. I apparently provided much mirth for the entire ward until the effects of the antihistamine wore off several hours later. When I returned for my next round of chemo two weeks later, one of the other patients who was having her infusion set up said ‘this shit is good’ as I walked past her bed. Comedy gold right there.

Quite possibly the best joke about my cancer came from my husband (otherwise known as the most supportive man in the universe). After chemo and radiation were done, we decided to that despite the fact it was June, a trip to the coast was in order. Our four year old would swim happily with icebergs, so there was no putting him off the idea of a dip in the outdoor pool, regardless of the fact it was 11 degrees outside. Of course he needed an adult in with him, and despite me pulling the ‘but I’ve had cancer’ card to try and get out of it (which I have done many times since) I ended up getting in the pool with him. As first my legs, then my torso felt the temperature of the water, I started shaking and my teeth were chattering uncontrollably. That was when my husband, in his ever-laconic fashion, says from his position in dry, warm clothes by the side of the pool ‘You know, if you had two tits they’d both be freezing off right now’.

As the old saying goes, comedy is tragedy plus time. For some of us, that time is 36 days, for other the equation requires a far shorter amount of time to pass before shit gets funny.

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.

The Old Grey Mare

Before reading this post, please accept my apologies for the dodgy photographs, and give a small vote of thanks that I don’t have Instagram.

I found my first grey hair at the age of 28, but by then I’d already been colouring my hair for a few years, albeit pretty casually. As soon as I found that grey hair I was at the salon as quick as you can say ‘get rid of any trace of old lady-ness off my head, stat!’, and from then on, I had my hair professionally coloured every six weeks. Fifty shades of brownish-auburn.


Before Grey

When chemo made my hair all fall out (except for my cockroach-esque eyebrows that hung in there despite the intense chemical warfare), I knew that when it grew back it’d be grey. I really didn’t give a fuck about the colour, because HAIR!

during chemo 4

Bald, smiling, bit of lippy on but looking and feeling like absolute shit thanks to massive doses of chemotherapy and steroids.

When it first grew back it was almost white, and at the nape of my neck it curled in a way that could only be described as pubic. Then it gradually went straight, and a much darker shade of grey. It suited me; I got constant compliments from friends and strangers, and I look back at photos and think how much my face glowed under its short cap of silver.

During Grey

During Grey

I kept it grey for a year. Not because I wanted to, but because I was told by the oncologist that I would likely have a severe skin reaction to hair dye, and to leave it au naturel for 12 months to allow all of the chemo drugs to be completely removed from my system. From the day of my diagnosis with breast cancer, I did what I was told. I had my right breast cut off, did chemotherapy, then radiation, then hormone therapy. No swimming during chemo, no cold seafood, no soft cheeses, no manicures or pedicures, no massages, no unprotected sex (LOL). No deodorant during radiation, no scented moisturiser, no exercise which causes the core temperature to rise, no raising my hands above my head. And even then, even after the treatment was done, no remedies to treat my horrendous menopause symptoms, no hair dyeing, still no unprotected sex (still LOL). So the moment I was allowed to exercise my free will, even in the smallest way, I did. Exactly one year to the day from the end of my chemo treatment, I was at the hairdressing salon having my hair coloured brown. Totally sticking it to the cancer man!

julie now

After Grey

That was more than a year ago now. I initially loved the brown hair, mainly because it made me look exactly the same as I looked before cancer. And to my poor brain, which had been addled by so much fear and anxiety, looking the same as I did before was very important. I was desperate to prove to myself, and everyone else, that cancer hadn’t changed me, that I had weathered the storm unscathed (apart from the collateral damage of my right breast). But I gradually started realising, when I started writing my story down, just how fucking pointless and exhausting it was being in denial.

Today, I feel like I’m getting pretty close to coming to terms with the fact that I am no longer the same person I was before October 2012, but that it’s OK. And so, to celebrate, to mark this milestone of my life, I’ve decided to let my hair go grey. Right now, it is a distinctly unglamorous mix of grey roots and brown ends.

Going Grey

Going Grey

Like the saying goes, the old grey mare, she ain’t what she used to be. But that, my friends, is fine with me.

storm poem

A Life More Ordinary

I love the day-to-day sameness of life. I wake up at about the same time each morning, because my six-year-old wakes up at about the same time each morning and I am greeted by his beautiful toothless grin as he wishes me good morning. I shower, washing my hair, then face, then body. I get out and dry myself in the same order every day – face, arms, legs, front, back. Teeth cleaned, deodorant on, skin moisturised and then into bra and undies while that soaks in, make-up on, hair tamed. Iron my clothes, get dressed, downstairs to make Hugh’s lunch and my lunch and have a quick bite of breakfast before I’m out the door just before 8am. In the afternoons I’m home around 5, I cook dinner while Dave supervises homework, piano practice and footy kicking. We eat, Dave cleans up, we loll about for a while watching dodgy television and then I put Hugh to bed, always with a story first. Dave and I then watch whatever tv series we are currently obsessed with – last week it was season three of House of Cards, this week it’s season two of The Fall. Every weekday, lots of sameness. Very ordinary.

Saturdays we get up a tiny bit later, do multiple loads of washing – darks, coloureds, whites (always in that order) and then Dave and I attack the housework – he does bathrooms and toilets; I do kitchen and floors. After that I pick up my mum and we go grocery shopping. The afternoons are a bit more fluid – maybe a playdate, maybe lunch out, maybe some fun shopping, maybe a nap. Saturday night is wine or cider, sometimes takeaway, sometimes a night out with friends. Sunday is sleep-in, more washing, park time, play time, then cooking a few meals ahead for the week, and making something remotely healthy for lunch boxes. Sunday is the day banana bread for morning teas seems like a good idea, until Monday comes around and nobody likes banana bread. Weekends are relaxing in their ordinariness.

The thing is, there is so much joy in my ordinary life. So much pleasure in the sameness. In 2012 and 2013, my life was punctuated by scans, diagnoses, surgeries, treatments, illness and despair. There was no ordinary; life was upside down and inside out. I craved normalcy, but there was none to be had. Christmas 2012 my present was a gorgeous pair of earrings that the jeweller told my husband would suit someone with short hair (I guess no hair is the shortest kind of hair), New Year’s Day 2012 was spent having a cytotoxic infusion, later that January my son started school for the first time as I again went off to chemotherapy, and then we celebrated his 5th birthday the day I finished radiation, with third degree burns weeping through three layers of bandages and clothing. So little ordinary, so much fucking horrible.

But, thanks to a mix of the wonders of medical science and plain and simple good luck, I got a second chance at ordinary. I’m now 2 years, five months and five days into a remission that I was only given a 50% chance of having. I look like an ordinary person; I have hair, I can walk more than 100 metres without needing to sit down, my skin isn’t grey, my face isn’t bloated, and I don’t have a catheter sticking out of my chest. I am an ordinary person; I make my son the same school lunch every day, I sleep in my mismatched pyjamas in bed next to my husband every night, and I absolutely fucking revel in all of the ordinary, the normal, the same.

There is, however, one neither normal nor ordinary thing that cancer has given me that I plan to hold onto, and tightly. Just under a year ago, inspired by the tales my prosthetic right breast had to share, I started this blog. In those 11 months, I’ve had a small but dedicated group of readers who’ve encouraged me to keep telling my stories and who’ve inspired me to think and write, to put into words (and dodgy memes) my pain and happiness, and joys and fears. Then, last week I wrote a post about children and friendship – or maybe it was about bigotry and intolerance – or maybe it was just about love – and it’s safe to say that it went absolutely fucking nuts. More than 250,000 – yes, TWO HUNDRED AND FIFTY THOUSAND, people viewed my post via Facebook shares. A quarter of a million people read my words, heard my voice, felt my anger and my sadness, and expressed their own.  The resulting conversations, via comments here on the blog, on Facebook, Twitter and via email have had the most incredible impact on me, and I am abuzz with the power of words and the possibilities they bring.

A little bit of extraordinary in a life more ordinary.

Think of the Child

My six-year-old son’s best friend is an amazing girl called Pascal. They have been solid buddies for almost three years now. They don’t attend the same school, but have regular play dates and sleepovers, where they play outside in the dirt with items pilfered from my kitchen concocting ‘ant stew’ (which doesn’t actually involve any ants), make indoor tents out of sheets strung over dining chairs, and put on puppet shows using old fridge boxes as the stage. They have tennis lessons together on a Friday, joyfully running to meet each other at the courts and racing around in circles like a pair of excited puppies.

Their beautiful, innocent meeting of hearts and minds has given rise to a broader friendship at the family level, which has been cemented through trips to the theatre, lunches and dinners out, birthday parties, and camping trips. The camping trips have been a real revelation, as anyone who’s ever slept on an air mattress for three nights whilst not showering for three days whilst managing diminishing ice in the esky would know – if you can camp happily with another family, you’ll be friends for life.

Hugh and Pas

Pascal is the sort of child that parents dream of their kid becoming friends with. She is whip-smart, loyal, kind, insightful, happy, well-mannered and incredibly aware of the world around her. She is naturally-gifted at sport, and likes art and cooking and flower-arranging. The last time she visited our house, she made a pink collar out of paper for one of our dogs, and told my son that although she no longer sleeps with a stuffed toy, it was ‘pretty cool’ that he still does. She has the most beautiful blonde curls, and a smile that lights up her whole face, and usually the whole room. She may only be seven years old, but the love and care she shows for my son is something truly special, and he feels the same way about her. When they are due to see each other, he will count down the hours, alive with anticipation at the thought of being with someone he adores. Hugh, and Dave and I as his parents, have been blessed by this friendship. We hope that they will be in each other’s lives for a very long time.

It’s largely because of this friendship that I felt absolutely white-hot with rage when I read this article in our local paper. As I read the story of this hateful, small-minded group and what they stand for, my skin started to prickle and I could feel the blood start to pump in my temples. You see the one thing about Pascal that I didn’t feel relevant in my description of her, is that her parents are a same-sex couple. It’s not relevant because it doesn’t change anything about her. It certainly doesn’t make her less smart or less caring or less capable or less blonde. The only thing I think that having same-sex parents does change, is perhaps make her more likely to be the target of bigotry and ignorance from people who claim to be Christians but whose actions are the very antithesis of the central tenets of Christianity. And the thought of that simultaneously makes me furious and breaks my heart.

The slogan of this nasty little group is ‘Think of the child’. Well I am sitting here, thinking of the child. Actually, I’m thinking of several children. I’m thinking of Pascal, and how blessed she is to have two smart, capable, caring and wonderful parents who love her and cherish her, and who are dedicating their lives to raising her (and her gorgeous little brother) to be the absolute best people they can be. I am thinking of Hugh, and how much he loves his friend, how proud he is of her and how much he has benefited from being involved with another family, just like ours, where love and happiness abound.

And most of all, I am thinking about the children of people like David van Gend and the other members of the Australian Marriage Forum, and how they are growing up in the shadow of bigotry, ignorance and fear. I’m wondering who’s thinking about those children, the ones who are clearly the most at risk.

First to Go

My Dad died on Sunday, 22 February. He was 82 years old. There is no tragedy in the death of an octogenarian who passed away peacefully in a bed in a palliative care ward, having received visits from his nearest and dearest throughout his final day. There is of course sadness, especially for my mother who has lost her husband of 57 years. She is a very healthy and spry 79-year-old, and it is hard to imagine what is going on in her mind as she thinks about the years she has ahead of her, without the person who has been her constant life companion since they met when she was 21 years old.

This past week, I have done many things for the first time. I have seen my father’s still-warm body before it was taken to the morgue. I have helped organise a funeral for an atheist who loved gospel songs like Old Man River and When the Saints Go Marching In. I have set my six-year-old straight on his notion that a funeral is a ‘big, fun party’, and held his hand as he stood in front of his grandfather’s casket and wondered what it might be like inside. I have greeted people at the chapel with a smile and a hug, and farewelled them in much the same way, just with added panda eyes. I have truly felt like a 45-year-old woman, really for the first time, as I’ve comforted my parents’ friends, who used to be 45 when I was a kid, and whose numbers are dwindling with every passing year. A husband left here, a wife or two there, a very occasional couple who no doubt wonder which one of them is going to be the first to go.

Some couples are not afforded the luxury of contemplating whose ageing body, with its uncountable wrinkles and aching joints and failing faculties will be the first to give out. Some couples are split in two by death, well before death has any fucking business coming to call. A few weeks ago, my friend Antoinette found out that the cancer has moved from her bowel, to her liver, and now to her lungs, and it will kill her. Her husband knows who will be the first to go, and who will be left with four small children to raise. He knows who will never live the dream of dying a natural death at 82. Last Friday, my friend Jules found out that the surgery that might save her life could not be performed, and that she will die from cancer. Her husband also knows who will be the first to go, and that he too will raise four children without their mother. Right now, my friend Deb is living out her last days in hospital, with her husband by her side, while cancer kills her. She is not even 40 years old. There will be no grey nomading, no retirement villages, no chance at 57 years of marriage.

My father had a beautiful baritone singing voice, and I have many memories of him singing the gospel songs that his atheist heart loved. I also have memories of him helping me buy my first car, move furniture into my first house, and the day he met my soon-to-be husband for the first time. I distinctly remember the first time he met my newborn son, and declared he’d be much more interested in him when he could talk. I remember the difficulties as he aged, and his last year of sickness and dementia. An awful, difficult time, but the ridiculously cheap price of a life lived long.

The words of this song made me cry last Thursday at my father’s funeral, but they are making me cry even more today. Please keep a place in your heart for those who know, far too soon, that they’re going to be the first to go.

I get weary and so sick of tryin’
I’m tired of livin’, and afraid of dyin’
But Old Man River, he just keeps rollin’ a
Old Man River, he just keeps rollin’ along