Month: June 2014


Last week, the second series of the Australian television drama The Time of Our Lives started on ABC. I’d seen on the promos that one of the plot lines for this series would be one of the lead characters dealing with finding out she has one of the BRCA gene mutations, which means she is at significant risk of developing breast cancer. I don’t have a BRCA mutation, but since I was launched unceremoniously into breast cancer world in 2012, I have learned far more than I ever wanted to know about the subject. Actually, I probably know enough to open up a theme park called Breast Cancer World, which would feature fun rides like emotional rollercoaster that once you get on you can never get off and the menopausal mood swings that go up very high and then down very low. Side show alley would include the House of Horrors, where chemo patients would roam about scaring unsuspecting small children with their hairlessness.

If this blog doesn't work out, I'm thinking of getting into graphic design.

If this blog doesn’t work out, I’m thinking of getting into graphic design.

The breast cancer plot line in The Time of Our Lives has so far been handled in a pretty accurate way, which makes me think at least one of the writers has some intimate experience with cancer. There was one line in last week’s episode that particularly struck a chord with me. The character of Bernadette goes alone to her appointment with the genetic counsellor, where she is told she carries one of the BRCA mutations. She then sits on this information for a few days, before blurting it out to her partner. He comments that he is concerned she went to the appointment unsupported, and doesn’t have to do it alone. Her response is very poignant, and I believe very true: ‘I am alone’.

When you are going through the process of diagnosis and treatment, and then living in the aftermath of cancer, there are many times when you have no choice but to be alone, and there are also just as many times when you have choices, but still choose to be on your own. The confirmation of my diagnosis came via a phone call, and that was the first indication to me that no matter how much support you have as someone with cancer, you are essentially alone. It is not a shared experience, it cannot be. The disease is in you, the type, stage and manifestation is particular to you, and it is trying to kill you. You will often be surrounded by others – people who you love, medical staff, strangers – but still be entirely alone. A large part of the cancer experience is mental and the internal monologue, which is a solo act performed for an audience of one – yourself – is relentless. Am I going to die? I probably am going to die. I don’t want to die. What will happen to my kids if I die? How will I die? Where will I die? I wonder what’s going to be served for morning tea at chemo today?

Tasty chemo morning tea.

For those playing along at home, the answer was ANZAC biscuits.

Radiation therapy was, for me, the ultimate experience in being alone. Every day for six weeks I would lie naked from the waist up, on a metal slab, perfectly still with my head and arms positioned in a moulded cradle made just for me, in a large, lead-lined room. The radiographers would sit in a separate room, away from the potentially deadly ionising radiation, watching via closed circuit tv as the machine rotated its way around my body. The fact that this was happening to me, and me alone, could not have been more apparent as it was during every one of those daily sessions. Every day I fought a battle in my head, watching the machine rotate around me, staring at the blank white walls, breathing in and out. All alone.

Now I’m in the first throes of being a cancer survivor, I am still alone. Please don’t mistake being alone for being lonely. I am not lonely, ever. I have all the love, and support and care that any person could ever hope for. But my soul lives alone in my body, which at any given moment could be betraying it. Right now my cancer could be re-generating in a tiny skerrick of tissue left behind when my breast was removed, or metastising itself in some other part of me like my lungs or my liver or my brain. I am alone with this knowledge, it is my individual truth. My oncologist knows it in theory, talks to me about my numbers and my percentages and my chances, but ultimately if my cancer comes back, it will come back to me, and me alone.

It took being a part of a group to make me realise that it wasn’t just me who felt that the real, nitty gritty experience of cancer is done alone. I’ve always struggled with a true definition of irony, but I think that having a conversation with your cancer support group where everyone agrees that cancer is, in essence experienced alone, probably fits the bill.

Cancer support group terms of reference.

Cancer support group terms of reference.

Of course there are parts of the cancer experience that could not be managed without the presence of others to soothe, comfort and reassure, and other parts where you crave shared experience when it is simply not possible. Sometimes you seek out opportunities to be alone, sometimes you accept being alone because there is no choice, and sometimes you wish that you were not so alone,  if even for a second. The French writer Sidonie-Gabrielle Colette sums it up far more poetically than I: “There are days when solitude is heady wine that intoxicates you, others when it is a bitter tonic, and still others when it is a poison that makes you beat your head against the wall”.

Bold in Her Breeches

If there’s ever a nuclear disaster,  there will be two things remaining once the mushroom cloud has settled – cockroaches and eyebrow hair. After my second chemotherapy treatment, all my body hair fell out pretty much instantaneously, except for about half my eyebrow hairs which held on through a further 12 weeks of chemotherapy. It was only those few hairs that stopped me from having to draw on my eyebrows. I have limited skills in the make-up application department, and was fearful that if left alone with an eyebrow pencil long enough, I would end up looking like a bald Joan Crawford.

Chemo can be so surprising.

Chemo can be so surprising.

I am an avid reader of a blog called Tune into Radio Carly, which is written by Carly Findlay who is an appearance activist, writer, speaker and tv presenter. Carly has a genetic skin condition called ichthyosis which causes her skin to be red and scaly, and therefore her appearance to be visibly different. I’ve learned so much from reading Carly’s blog over the past few years, and when I was bald, I got a tiny, brief insight into what it’s like being physically different.

I’ve certainly never been hot stuff or even remotely close, but have ‘average’ looks and fit into the standard white anglo mould, which has allowed me get through life in a pretty steady fashion. Then, in a matter of two months I had my right breast cut off and lost all the hair off my body (apart from the aforementioned eyebrow hairs).  I was suddenly dropped bald head-first into the world of stares, double-takes and backward glances, which when you are already feeling very fragile, is not a nice place to be.

For the five weeks after I had the mastectomy, I had to get about with a very dodgy pretend boob which used to try to sit on my shoulder like a pillowy parrot. I suspect that nobody else in the supermarket was looking at me closely enough to actually notice, but it made me really self-conscious and I was so, so happy when I got my real fake boob. It was amazing how much impact feeling like I looked like I did before had on my mental state. That lasted only a couple of weeks until, just days after my second chemo treatment, the majority of my hair fell out one morning in the shower. I quite literally went into the shower with a full head of short hair (I’d had it cut in preparation), and came out looking like a mutant peach with patches of fuzz mixed with sections of completely bald noggin. My husband then set about using his Bic razor to even things up. I’m pretty sure our marriage vows did not include any mention of shaving your wife’s partially bald head, but I guess things like that fall into the general categories of love and honour.

I had mixed feelings about being bald. On the upside, it is really freeing not to have to wash or comb or dry or colour or cut your hair, and the feeling of showering when you have a bald head is absolutely amazing – I would often stand under the flow in a blissful trance until the hot water ran out. On the downside, I certainly did not have the confidence to get about bald in public, so my choices were pretty limited – wigs, scarves or hats. In the very early days I tried a couple of wigs, but the combination of my very large head and the fact that it was Queensland in summer, meant that after about 45 seconds of wig-wearing I looked like a sweaty, itchy lady with bad Lego hair.

This fan ain't for decoration.

This fan ain’t for decoration.

So I moved on to scarves. I love scarves as a fashion accessory, but prefer them wrapped around my neck in winter, and not my head in summer. I bought about a dozen in a vain (and I mean that both ways) attempt to find something that didn’t make me look like a middle-aged female pirate. I soon found out that even if my scarf didn’t have a skull and cross-bone pattern and I wasn’t wearing a single hoop earring and an eye patch, being an obviously bald woman wearing a scarf brought me lots of unwanted attention in public. The first time I ventured out after I’d lost my hair was to a local shopping centre. I immediately noticed people staring as I walked past them, and there were several people who did the classic double-take, as well as a few who actually stopped in their tracks to watch me as I made my way through Target. I felt incredibly uncomfortable, but when I got home my husband reassured me that people wouldn’t be so rude as to stare and I was just being overly sensitive. However the next time I was in public and he was with me, he realised that it was not my imagination and in fact people were actually as rude as I had first thought.

When you’re dealing with cancer, you’re faced with many uncomfortable situations, such as conversations with doctors about what chance you have (expressed as a percentage) of still being alive in five years. But those situations and the way you deal with the outcomes of them are thankfully done in private, whereas losing your hair makes your cancer conspicuous to the world, which apparently causes some people turn into thoughtless shopping centre rubber-neckers and others to feel the need to ask the most impertinent of personal questions. While I was bald I was asked by a check-out operator what sort of cancer I have, by another customer in a bank if I’d had a mastectomy or just a lumpectomy, and by someone who I’d met two minutes earlier outside our kids’ classroom if I was planning to have more children once I got over the cancer.

The bald head and thinning eyebrows seemed to cause all social norms to go out the window, and honestly I would have just hidden away at home for the duration if I’d had any choice in the matter. But we still needed food to eat and Christmas and birthday presents had to be bought, and my boy still needed to be taken to school every day, so I just learned to steel myself with a few deep breaths and push through the world pretending not to notice or care about what others were thinking or saying. It pains me to think about people who live every day with visible difference and the rudeness that they are subjected to as a matter of course.

Today, I have a lovely crop of hair and eyebrows that could actually do with a wax. People don’t look twice at me in shopping centres and I am just as nondescript and zombie-like as every other poor person in a long lunch-time bank queue. I look like a stock standard middle-aged woman, and with every passing day I feel a tiny little bit less like I have the word cancer stamped all over my psyche. All I’m waiting for now is an invitation to a fancy dress party because I have a shitload of options in my wardrobe … as long as the theme is ‘adventure on the high seas’.

I can't believe the title I wanted for my autobiography has already been taken.

I can’t believe the title I wanted for my autobiography has already been taken.



The Best Things in Life are Free

The saying goes that best things in life are free. But there are some pretty fabulous things that are not free, actually far from it.

Things that are expensive:

Seven nights at this holiday house at Port Douglas – $30,000 (off-season, of course)

port douglas

Gucci Soft Stirrup Crocodile Shoulder Bag – $35,000 (and I bet I’d still not be able to find my keys unless I tipped the whole thing out)

Gucci handbag

Bottle of Dom de la Romanee Conti St Vivant Grand Cru Cote Nuit Vosne Burgundy – $38,000 (will still make your teeth and tongue go purple, but in a really fancy French way)

expensive wine

There are also some really shit things that are really fucking expensive:


On average, cancer costs the patient $47,200 out-of-pocket. That is, $47,200 which is not covered by Medicare or private health insurance (if you have it). $47,200 that you either have to pay out in direct medical expenses such as specialist visits, surgeries, treatments and medications, travel expenses, increased need for child care, ongoing need for specialist devices and prosthetics (aka the actual boob in the actual box), or that you lose because of time off work for either you, or your carer, or both.


The amount cancer costs an individual varies on the type and stage of cancer and their life situation. In my case, in terms of actual medical expenses, breast cancer is one of the cheaper cancers because it is common and the treatments are readily available and therefore not as expensive. It also doesn’t require a lot of medical imaging tests, unlike many other cancers such as those within the organs. Having said that, my cancer was at an advanced stage and so my treatments were complicated and heavy-duty. My out-of-pocket medical expenses added up to just over $12,000 in eight months.

I have premium private health insurance, which covered the bulk of my $48,000 total treatment bill, but  I still had to fork out for the many gap amounts which have to be paid by the patient, and then there was the cost of a seemingly endless array of medications. These medications aren’t actually to treat the cancer (as the chemotherapy drugs are paid for by your health insurance), but rather are to treat the side effects of the cancer. Endone for pain, steroids to boost immunity, temazepam for insomnia caused by the steroids, neulasta to prevent infection, SM-33 gel for mouth ulcers, silver sulfadiazine for radiation burns, amoxicillin for post-radiation burn infections …. and there’s your $12k gone.

As well as the $12,000 spent on medications, I lost in excess of $50,000 in income, as my income protection insurance did not cover my full salary. At the time of diagnosis I was the sole income earner, yet despite losing a breast, all of my hair, a fair amount of my sanity and more than $60,000 in the space of a year, I am one of the lucky ones. I could afford to pay for everything I needed. I had some income protection insurance. We were well ahead on our mortgage and were able to access that money to pay for my out-of-pocket expenses. We lived close to treatment centres so travel and accommodation did not have to be paid for. Dave put his degree on hold and found a job quickly that thankfully had the flexibility to enable him to care for our young child and me. We took a financial hit, but we have been able to come back from it. This is not the case for many people, and it will continue to get worse if the planned changes to Medicare go ahead.

The recent federal budget announcement in Australia was followed by a shit storm in the media about the mooted changes to Medicare. Most of the media coverage, and the associated discussion on social media, was about the government’s plans to introduce, from July 2015,  a $7 co-contribution charge for GP consultations and out-of-hospital pathology services, and an extra $5 towards the cost of each PBS prescription. What did not get much attention or discussion was the proposed changes to out-of-pocket costs for medical imaging such as CAT scans, MRIs and x-rays. The Australian Diagnostic Imaging Association says as a result of the budget  most patients will have to pay $90 upfront for an x-ray, $380 for a CAT scan, up to $160 for a mammogram and up to $190 for an ultrasound. A PET scan will cost over $1000 upfront. Whether you are a public patient (with some exceptions) or have private health insurance is irrelevant. These will be your upfront payments.

If you have, for example, advanced bowel cancer, you may require some sort of scan every 2-3 weeks during your treatment, which can go on for years. You may require a CAT scan one week, and a follow-up PET scan two weeks later. If these changes to Medicare proceed, you could be facing an outlay of $1380 every month just for basic testing. It should be stressed that this testing is not being done for shits and giggles (pardon the arse cancer pun there), it is being done so that decisions can be made about the type of treatment needed, and whether treatment is working or needs to be adjusted. Cancer patients universally hate scans because of the enormous and soul-destroying anxiety caused by the wait for results, so having to pay thousands of dollars each month for a dose of scanxiety just adds insult to injury.

Cancer is not something that happens to old people, or rich people, or other people. It happens regardless of where you’re at in life, and the worry about the financial cost adds another dimension to a really shit situation. I can tell you from experience that lying in your hospital bed alternating your worry between whether you are going to die and whether you will be able to pay the mortgage is horrendous. To exponentially increase the cost of doctors visits, medications and scans will mean that some patients simply will not be able to afford the treatments or tests they need.

If you want to register your concern regarding the proposed changes to Medicare, so that every person in this country can afford to access the health care they need to stay alive and live well, here’s what you can do:

  • send an email  to or telephone your local Federal member and/or state senators – contact details can be found here;
  • add your support to the GetUp campaign to protect Medicare;
  • think very carefully about how you vote at the next election.

Happy Days

On this day in 1967, in a tiny little hospital in country Victoria, a baby called David was born. He was the fourth boy to come into the family, with beautiful red hair and bright blue eyes. The red hair is important to this story, as two years later in a town in Queensland a little girl was born, and it would become clear once she was a teenager and saw the character of Richie Cunningham in the tv show Happy Days, that she had a thing for red-headed boys. Apparently natural red-heads represent only 0.5% of the world’s population, which may explain why it took that girl until she was 36 years old to meet the red-headed bloke of her dreams.

I found my thrill …

That baby boy is my husband Dave, who celebrates his birthday today, and that girl with a penchant for red-heads has never lost her taste for them, but these days it focussed on just one ginger in particular.

When you get to the age of 36 and you are still unmarried, you pretty much resign yourself to a life of singledom, but I was a never say never kinda girl, and so with low expectations but sporting a red shirt which made the most of my great rack just in case, I embarked on a blind date on Sunday, 11 December 2005. We met for lunch, which turned into a four-hour conversation, which turned into dinner the next night, which turned into a proposal in Sydney on my birthday eight months later. We got married on 16 December 2006.

Love, honour and ... holy crap I'm marrying Richie Cunningham!

Love, honour and … check me out people, my very own Richie Cunningham!

There are many words that I could use to describe Dave, who is in fact a man of very few words. He is funny, smart, and incredibly capable, and above all a loving partner and devoted father. At the age of 42, he decided to quit his job as a boilermaker and go to university for the first time to do a Bachelor of Education so he could become a special education teacher. It took phenomenal guts to take that plunge, but he has stuck at it, achieving a GPA of nerd-like proportions with now only six courses left until graduation. Of course he has his faults, including starting a sentence ………… and then finishing it twenty minutes later, and apparently untreatable male blindness which causes him to be unable to find things despite them being exactly where they’ve always been. But I’m not going to mention those faults here because it would be rude given it’s his birthday today.

Of course it hasn’t all been beer and skittles for us. I found out I had cancer just prior to our sixth wedding anniversary, and the aforementioned great rack got turned into a not-so-impressive coat hook. Despite what telemovies and inspirational posters would have us believe, cancer does not bring out the best in you, it brings out the absolute worst – and I look back now and wonder at Dave’s ability to maintain his quiet, stoic support through my regular bouts of complete selfishness and utter irrationality.

cancer demotivate poster

Today our life bubbles along. I like to cook and he cleans up, I break things and he fixes them, I am a menopausal seether and yet he doesn’t feel the need to drink to excess. As I was the day we got married, I am so pleased and proud to be married to this wonderful human being. He is a gem, a quiet achiever, and a top root, and whilst he is in my life I will continue to be a better person than I was before.

Happy Birthday to my beloved husband. In the time we’ve been together I don’t think I’ve succeeded in finding you the perfect gift, and I’m betting that this post leaves you more embarrassed than it does chuffed. But this blog is something that you’ve supported so wholeheartedly that I thought it only right (and cheap) to acknowledge you in this way.

Here’s to you honey. These happy days are yours and mine.

The Gift of Now

My undergraduate degree major was English Language and Literature, which meant I read several novels, poetry collections and plays each week. I was constantly finding quotes that resonated, and sticking them to my bedroom mirror or the pinboard above my typewriter. Yes, typewriter. As well as giving me a lifelong love of the written word, my degree enabled me to develop ancillary skills such as the ability to centre a heading on an A4 page by finding the middle of the page by using the typewriter’s inbuilt ruler, counting the letters in the heading, and then backspacing half that number. You’ll be pleased to know this was before the introduction of HECS, so thankfully I didn’t rack up a big debt honing my typewriter skills to make me a bit more employable, only to have personal computers become a standard in most workplaces the following year.

Because like many arts students I was a bit emo before emo was even a thing, a quote that got stuck to my undergraduate pinboard was this one by the American poet Emily Dickinson:

forever quote

I’d forgotten all about this quote until I read it again on the weekend, in a newspaper article about a terminally ill artist called Joannah Underhill. Joannah was diagnosed with Hodgkin’s lymphoma, a type of blood cancer, in 2006, and in the ensuing years underwent a range of aggressive treatments including chemotherapy (multiple times) and a bone marrow transplant. But Joannah’s condition relapsed, and after radiation failed she was offered one final treatment – another bone marrow transplant. On the verge of beginning this last-ditch regime, and after eight long years of devastating treatments, Joannah decided not to go ahead, and is now receiving palliative care. She is 36 years old.

When I first read that quote, I was an 19 year old university student who had not much of a clue about all the terrible, sad, and wretched things that can happen to people, and thankfully, had absolutely no inkling that some of these might one day happen to me. At the time, I took the quote to mean that life is full of possibilities, so take every opportunity offered to you as it’s offered. In my naivety, ‘forever’ was something we would all get a crack at. My only first-hand experience of death was that of my grandmother who had died the year before at age 82. She’d dropped dead in her own home after a morning spent at bingo, still in one of her nice going-out frocks and smelling of 4711 which had long been her perfume of choice. I guess at that point I’d led a pretty fortunate and sheltered life, so the notion of someone dying a lingeringly painful death in their 30s or 40s was as foreign a concept to that young arts student as actually turning up for lectures.

Since I was reminded of that quote on the weekend the words have been flipping around in my mind. I know from my bitter experience with cancer diagnosis that there is no such thing as forever, and that all we have is now. Each now we get is a gift. Sometimes that gift is golden, and handed to us on a platter – a bike ride in the winter sunshine, the preparation and sharing of a delicious meal, a chance to watch our favourite team play live (GO CATS!). Sometimes the gift is a small chunk of hope ‘you will be treated with curative intent’, wrapped in a packaging of anxiety, fear and despair ‘but your chances are still only 50/50’. Sometimes the gift is finding the strength to keep trying treatments in the hope of extending life, if only for a few extra months. And sometimes, for people like Joannah, the gift is in the letting go and the acceptance. For her, there is joy in living every day as it comes, despite – or perhaps because of – knowing that her last day is not too far away.

Apheresis by Joannah Underhill. Click on this image to visit Joannah's website.

Apheresis by Joannah Underhill. Click on this image to visit Joannah’s website.

I don’t know Joannah Underhill but I am in awe of her guts and her grace, and the sense of life that leaps out of her artwork, and the quietude that emanates from her words. I am also in awe of those who are told they are terminally ill and are not accepting of it, who continue to fight tooth and nail, who rail against the utter unfairness and walk, terrified and weeping, into operating theatres and treatment rooms to undergo regimes that only have a small chance of working. I believe that the desire to fight on, despite being battered and bruised and down for the count, is as poignant and heart-wrenching as the decision to put a stop the fight altogether. To quote Emily Dickinson again:

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –

Graffiti on my Psyche

I spend the 15 minute drive to my day job each morning thinking about writing on this blog. I have lots of ideas churning around in my head, and although an idea might start off being totally unrelated to cancer, somehow everything I write about ends up cancer-flavoured (it’s hard to describe, but I can tell you it tastes nothing like chicken.) As much as I try not to write about cancer, I end up writing about fucking cancer. It occurred to me today that trying not to let cancer influence what I write about would be like trying to see someone else’s face when I look in the mirror.

It’s as if the word the cancer has been graffitied all over my psyche and there are just not enough spray packs of ripper stripper for the soul available to remove it all. Even if I do manage to wipe some of it away, something will happen and those words are writ all over me again, bigger and uglier than ever. This weekend it was a migraine headache which refused to budge for a couple of days, despite some heavy-duty medication. I suffered from migraines before cancer and in the past have had many that lasted as long, but these days a migraine pretty much instantly has my brain screaming ‘secondary tumour, secondary tumour, secondary tumour’. One of my cancer friends actually did the whole Arnold Schwarzenegger ‘it’s not a tumour’ line for me which made me laugh and a couple of hours later the headache resolved.


My most recent CT scan.

The fact that  I have cancer friends doing cancer jokes about me potentially having secondary cancer demonstrates what I mean about it being written all over me. Of course I am, except for my right breast, 16 lymph nodes and my once amenable nature, pretty much the same person I was before cancer, but parts of me are vastly different and I’m still not entirely comfortable with that. I’m still in love with the same man, but he is now in love with a woman with one breast and sometimes that makes me feel so incredibly sad. I am still the mother of a gorgeous small person, but when I make parenting mistakes I mentally castigate myself about it, sometimes for hours on end, because what if I die and all he remembers is the times I yelled at him?

Some days the only thing that seems tangible is that I had cancer and I may well get cancer again; that word has been written over and over my soul so many times that I can’t remember what, if anything, used to be written there before. I have learned to accept these days, because fighting against them is pointless, and I also believe that the acceptance of them actually helps to reduce how often they occur. I often wonder what will happen if I make it to the magic five year mark, at which point I will be considered cured. Will the Cancer Council send in a psyche graffiti clean up crew to remove all traces of the unsightly tags, or will they be with me always, faded into a dull patina where the words are now unrecognisable but the sentiment lingers on?

I want so badly to find out. I want to know what it feels like to be someone who has been cured of cancer. The wanting of it is so visceral that I feel actual pangs when I think about it. Every day that goes by I am one day closer. Until then, and perhaps even beyond, I am marked, stained and defaced by cancer.

bc graffiti