The Breast is History: An Intimate Memoir of Breast Cancer

PROLOGUE

This book is based on the blog I was encouraged to write following a diagnosis of breast cancer in late 2011.

I was motivated by a friend, Robert, who told me that by sharing my experience, I would help people dealing with the impact and repercussions of what is one of the more undiscriminating diseases in the world.

This year, around 14,300 women and men in Australia will be diagnosed with breast cancer, 75% of cases developing in women aged over 50.

I can tell you that, when diagnosed with an illness of such enormity, chronicling it is not exactly top-of-mind.

In fact, when news of my illness spread and Rob rang me, I was lying in my bed with the curtains drawn. Initially, all I wanted was to curl up in a ball and disappear.

As it turns out, this was not to be the case.

My blog became a regular installation that drew hundreds of readers from around the globe.

And feedback I have since received, from readers young and old, suggest that Rob was right.

I did help many people.

Breast cancer survivors told me my blog was cathartic. My daily, living record of what I endured allowed them to know that they were not alone. My journey was not dissimilar to theirs, in so many respects.

Friends were motivated to have regular mammograms and ultrasounds.

Young girls and boys gained a new understanding of what it means to ‘battle cancer’.

And those whose loved ones were unfortunate enough to receive a diagnosis of breast cancer along the way, benefited from knowing what was in store.

What was in store?

Here is a historical, if not hysterical, account of the breasts that were.

Friday, September 30, 2011

DIAGNOSIS 1

My journey begins around the second week of June 2011. For the first time in my life, I get the flu. I put it down to the increasing virulence of the germ and batten down to fighting it. But the cold hangs around.

This concerns me, a tiny bit. Generally, I’ve had the constitution of an ox. In Year 12, to my great embarrassment, I was one of two kids to receive a special citation for perfect attendance – not one day off sick in five years of senior schooling.

Through my early working years, I amassed a fortune in untaken sick days - I was never sick. I mean never!

In part, you’d put this down to the fact that I’m a serial exerciser and a health nut. I’ve lived a moderate life and tried to take good care of myself as best I can.

You could also put it down to good genes; my great-grandmother is rumoured to have died at 113.

So yes, getting the flu is a tiny sign.

But there are other clues. Normally a person with a zest for life, I have started to feel fatigued. I have difficulty getting up in the mornings.

I also find my old allergies have reappeared with a vengeance. Everything seems to make me sneeze. I have a sinus infection that doesn’t seem to want to go away.

With some strange prescience, my husband, Alan, observes: ‘You always seem to be sick these days, Bronny.’

Nonetheless I’m feeling fit. I’m running 10 kilometres, twice a week. I’m refereeing and playing soccer nearly all day on Saturdays. Sick, schmick.

It’s the sinuses that drive me batty, so in early July I take myself to the doctor and ask for the full suite of medical tests.

She’s happy to give me the referrals but when we get to the breasts, there’s a disagreement.

I ask the doctor for a referral for an ultrasound, to which she replies that a mammogram is adequate and I can have it done for free at Breast Screen Queensland.

‘No,’ I say. ‘I am happy to pay for it.’ The doctor seems to roll her eyes and mumbles something like: ‘Well, I suppose, if you’re rich.’

I have the referrals but as it happens, my work gathers momentum and I find July and August slipping away.

In late August I finally manage to get to my blood test and by early September, I know that all is well in that department. My cholesterol is pleasingly low and apparently liver, kidney and lung function are fantastic. There’s an issue with my haemoglobin - but I’ve been battling anaemia for years.

In the meantime, something alarming occurs with my left breast. At what clinicians will identify as ‘10 o’clock’, my breast is raised and sinewy. Google tells me not to be alarmed as breast changes are common in peri-menopausal women. But I have the referrals! My intuition tells me not to delay.

I have a mammogram and an ultrasound, which uncovers a suspicious lump. It’s a Friday though and I have to rush off to a meeting. I opt to return the following Wednesday for the biopsy.

In the ensuing days I try not to worry. I keep feeling the dodgy spot on my breast, imagining it growing.

My birthday comes. I realise how many friends I have. I feel sentimental and maudlin.

Two days later, it’s time for my appointment.

The doctor numbs the breast with a local anaesthetic. A needle is inserted into the lump and a small tissue sample is pinched with a device that makes a noise like a staple gun being released.

In smaller lumps in harder to get to places, a needle is used and is dug into the spot, over and over. It hurts.

That afternoon, I go for a walk with my friend, Lyndal. We don’t go far - maybe five kilometres. But I’m puffing. I observe that I must be stressed. Since the biopsy my heart rate is elevated.

That night, I go to my usual Trivia Night with my close bunch of friends. We come second and win the bottle of wine.

Now I must wait some more for the biopsy results. Two days move like molten lava as I await the bewitching hour. I don’t know what to think. I stay cheerful and positive. I joke to my family about being nice to me as I’ll be dead soon.

I make cracks about finally getting the flat chest I want.

I go to the gym as usual. I go for walks. I keep working.

When the doctor calls me in, my mind is a blank. She’s a Chinese woman and not given to jocularity, so I think nothing of her stern expression until she says: ‘The News is Not Good.’ It’s like a bad news headline: the announcement of a catastrophe.

We jump to words like ‘radiation’ and ‘chemotherapy’. Still, I’m not panicking. I’m watching events unfold in the third person.

In the car park, my mind is a scramble of thoughts. As I hop in behind my steering wheel, my cellphone rings. It is my friend, Anne, a psychiatric nurse, checking up on me. She’s known about this appointment. When she asks how I feel, I find myself explaining that, strangely, I’m not thinking ‘Why me?’. I’m thinking ‘Why not me?’. Have I leapt to acceptance so easily?

Anne says this is a fairly mature stage of thinking, in her experience. She leaves me with a saying common amongst the Scots (she’s Scottish, did I mention?).

‘What is meant for ye will not pass by ye’. Indeed.

I waste no time. That afternoon I’m the last appointment with the only local breast surgeon. His name is Dr Jason ‘L’. He’s in his mid-thirties, slightly built and with a gentle manner. He has three young children aged 5, 3 and 1.

Dr Jason asks me how I found the lump. He looks at the ultrasound and comments on how small the lump is. He congratulates me on finding it.

He has me undress and feels my breasts. After the examination, he draws a diagram explaining what happens with a cancer.

He tells me I’ll need a lumpectomy, which may include the removal of one or more lymph nodes.

He says I’ll also need radiation.

He knows this simply from looking at the ultrasound.

But what about that mammogram?

He places the mammogram screens on the light box. There is no sign of any abnormality.

The appointment with the surgeon is over. He directs me to the hospital where I must fill in the forms for my operation the following Tuesday.

As my husband Alan and I leave, we observe that we’ve received as close to good news as possible. The lump is small. It’s early stages.

That night we go out for dinner with friends, and we joke about breast reconstruction. Underneath the laughter, there is an undercurrent.

I can feel the tug of something inevitable.

As I leave the restaurant I receive a text message to tell me a good friend is by her mother’s deathbed in hospital. Her mum will die at 9.00 am the next day.

I realise that on Monday, my eldest son, Harry, will turn 18. (On Sunday, Alan and I will toast the last day of his childhood with a glass of champagne).

I think about living and dying. I think about growing old.

Saturday, October 1, 2011

HOSPITAL 1

The hardest thing about finding out you’re ill is telling others about it.

The evening of my diagnosis, I am at a loss about what to do. I know I should call people, but whom do I start with? And what do I say? I have no experience of this.

Those friends who have known about the biopsy send me SMS messages and I realise there is no textbook instruction on how to share the news.

I call my sister Nicky first. There are no preambles so I go straight from ‘Hello’ to ‘I have breast cancer’. She screams with disbelief - yes, she actually screams. What can you expect? This is the same girl who threw hysterics on the floor of Barclay’s Bank in London so they would allow her to make a withdrawal (she succeeded).

Alan tells me to ring my Dad. Once again, it’s like delivering the news of a death. Really, it’s that hard.

Later I ring my sister Fiona, then my friend Louisa.

And I learn my first lesson. Illness is not a loaf that can be shared. Every chunk of bread you break off only makes the loaf bigger. There is a subversion of the laws of science.

By now, Al’s golf mates have got the message. He’s on the phone, explaining. There are emails and more texts.

‘Everyone’s asking after you,’ he says.

What to do? I’m not enjoying sharing this news. So I write a personal blog just for a small group of friends and post it on Facebook. Only a handful reply. Well, that’s a bummer. It means I have to notify people individually. And I do, to a handful via email.

More well wishes follow.

The weekend passes. It’s a blur. I can’t really remember what I do. Mundane tasks are beyond me. My thoughts are scattered.

I purchase a birthday card for Harry and inscribe some carefully chosen words. I tell him to honour his potential and to use his gifts to enhance the lives of others.

Monday arrives and Harry turns 18. I give him his presents. He loves the t-shirt and shorts. He laughs at the ‘Guide to Growing a Moustache’. We’ve given him an iPad and he’s genuinely grateful. Who can believe my first child is now, officially, an adult?

The hospital rings to confirm my admission time. The anaesthetist’s office rings to confirm out-of-pocket expenses. Jenny the breast care nurse rings. She’s on annual leave, she explains, but she’ll pop round to see me at the hospital. She’s cheerful and convivial. We talk about recovery.

In the afternoon, I go for a 10 kilometre walk with Lyndal. It feels good doing something normal. I breathe in the smell of the sea.

That evening, the family goes to the local Thai to toast Harry’s milestone. Al’s Dad George has emphysema and it’s great that he’s come out for the evening. He seems well and I am thankful. We have a few laughs. We talk about this and that. The food is delicious.

Back home, I read and fall into a dead sleep. It’s a sleep I’m already becoming used to.

And now it’s Tuesday, four days after diagnosis. I’ve checked into my private room at the Mater Private in Redlands. The staff are friendly and personable.

In my room, Al puts my things away and we kiss goodbye. What I notice is the absence of thinking.

A nurse comes in, introduces herself and informs me I must wear compression socks for the length of my stay, in case of thrombosis. She measures my calf, and soon I’m wearing long white socks up to my knees. She confirms all my details and leaves.

As promised, Jenny the breast care nurse comes in. She gives me a welcome pack from a group called ‘Chicks in Pink’. It contains a bottle of water, a brochure, a pen and a pair of pink socks.

Jenny also gives me a black compendium full of brochures - thanks to the ‘chicks’ - about all the services on offer. There’s a free yoga class I can attend across the road to get my head back in gear. There are art classes run by a breast cancer survivor.

Jenny tells me I’m also entitled to a free bra, and gives me one to try on. It’s made of a soft, supple fabric with no underwire. ‘Wow, very comfortable,’ I observe as I wiggle into the 12DD she’s given me.

She says I’ll receive my own one in the mail, along with a diary to map my personal journey.

At this point, I am momentarily overwhelmed. I think about the kindness of strangers, the meaningfulness of small acts.

I change into my hospital gown.

Jenny hooks me up to an ECG to check my cardiac function. Because I’m past the age of 45, it’s compulsory. She confirms all my personal details again. She takes my blood pressure - perfect, she observes.

I lie there waiting. I read the brochure on radiation and its effects. I fill in the breakfast order menu. And then it’s time.

Jenny leaves, and soon after two nurses walk in brusquely and wheel my bed down the corridor.

In the waiting area, the anaesthetist introduces himself. He has a Scottish accent. There’s some confusion about the location of my scans. I’m wheeled into the operating theatre. I’ve had two operations before - both were emergencies and I didn’t have the luxury of this vantage point.

The whole room is gleaming white and moulded. There are large, stainless steel forms on the white ceiling. There is soft music playing. It feels like the set of a space age movie. I am dimly aware of my surgeon, a team. There is the clink of instruments. I am asked to roll from the bed onto the operating table. As I do, a biro rolls out of the folds of my gown.

‘Hey look what you brought with you,’ says the anaesthetist.

‘I told you I’m a writer,’ I quip.

‘You should do comedy,’ he says.

‘Actually I do.’

‘You should write him some new material,’ says my surgeon. ‘His stuff is getting a bit old’. Then the anaesthetist starts telling me a joke. Something about a waiter with spoons.

In between, the nurse is explaining that I’ll feel a jab and it will hurt a bit.

The anaesthetist is about to insert the needle. ‘Not yet! Let her hear the punch line,’ says the nurse.

I can’t remember the joke but the ending is quite funny. Dutifully, I chuckle.

As the nurse puts an oxygen mask over my face I ask, ‘Is that my heart I can hear on the machine.’

She answers yes, and that’s the last thing I remember about that.

When I wake up, I’m in my hospital room. There are pads on my legs robotically massaging my calves. There’s a band around one arm hooked to a machine that automatically takes my bloody pressure and pulse. The machines make deep puffing noise as they inflate and deflate. Technology is amazing, I think. I drift off to sleep.

Al comes to visit. My Mum and Dad come to visit. It’s the usual overnight-in-hospital so let’s cut to the next day.

It’s Wednesday when I get home and I spend the day in bed.

That evening I rouse myself.

I know this is important - not to wallow.

Al and I have been invited next door for dinner with old friends. We talk cancer but make a pact to talk about other things. And we do. I’m aware that this illness is to become a frequent Topic of Conversation. The problem is, there’s only so much levity one can insert. There aren’t too many jokes about cancer but here’s one: What did the 48-year-old get for her birthday?

Over the next two days, there’s only rest, phone calls and texts. There are gifts of flowers, fruit, chocolates.

By Friday morning, I emerge from my torpor. Robert calls and comments that I haven’t shared my news on Facebook. We talk about my blog.

He says I should be using my talents to empower people. Hmm. I think about that.

And so I write, and post, and wait for the inevitable murmurs of sympathy. I have publicised my weakness and my vulnerability. I don’t know if it’s a good idea.

The messages keep coming. I realise that people are basically good. Whatever our petty grievances, they are insignificant. There is no one so callous that they may wish you badly. I imagine my friends and their prayers as if they are the feathers of a giant angel’s wing. I imagine them enfolding me. I think about the protection they might provide with this wave of compassion that has come from friends and some who are, perhaps, still strangers.

Amongst them is a note from Alan’s cousin Karen, from Sydney. I know they are expecting a baby in March but now there’s an update.

It’s not one baby. It’s two! Twins.

And at once I know that this is what life is, an inevitable flux - of renewal and receding, the phases of a moon, a winter that will pass.

Saturday, October 2, 2011

DIAGNOSIS 2

I discover a new type of anxiety. It’s nothing like I felt the first time I went abseiling (off a building at the University of Queensland in the dead of night, with a group of half-wit students), or diving or skydiving.

It’s nothing like that fortnight I spent, unable to see, with stitches to both my eyes thanks to a car accident.

It’s not even like the time I was swept off the airbed I was riding down the swollen gorges of the Obi Obi in Maleny and had only the forefinger and thumb of a fellow traveller to cling to until I was rescued. (I spent that night freezing and beating off the leeches. Apparently a rescue helicopter was despatched but we weren’t found).

It’s like the anxiety you feel when your child goes missing, that abyss between knowing and not-knowing.

It’s Friday, September 30 and Al and I are once again sitting in front of Dr Jason. After the usual greetings he collects three pieces of A4 paper that have just been faxed through.

Literally hot off the presses, my pathology results.

He interprets what he reads as his eyes scan the pages.

He seems surprised.

He had thought it was a ductile carcinoma he says, but it’s lobular and unusual. Only 1-in-10 breast cancer cases, it seems.

The good news is that it’s hormone receptive, which means I’ll have access to an extra layer of treatment.

The other good news is that it’s what’s called ‘node negative’ - that is, it hasn’t spread to the lymph nodes.

The bad news is I will need to return to hospital next Wednesday to have more removed.

The other bad news is I will need chemotherapy.

For the first time in my life I hear the term ‘medical oncologist’.

At this point I notice a subversion of the principles of time. It seems my life is heading rapidly in a new direction, but I have to wait until Wednesday to learn about my treatment options. Time is fast but it’s slow. I feel as if I’m suspended in a different reality.

Appointments are made and we leave.

Al asks me if I want to go to the local bar, Elysium, where it is our habit to catch up with friends every Friday evening. I don’t want to go home so we meet ‘Burglar’ and Natalie, Greg and the Dowlings.

Yet again, I find myself talking about the subject, but now there’s a new ‘C’ word eating away at my thoughts.

Afterwards, we pick Ben up from home and go to my sister Nicky’s for dinner. My mum and dad are there.

We talk about my situation. Here is what I’ve learned.

I have what is described by the pathologist as a (classic) invasive lobular carcinoma.

It’s larger than it looked either by palpation or ultrasound; in fact, it’s roughly double the size. It has three tubules, two nuclei and one mitosis.

It is node negative, 80% Estrogen receptive and 90% Progesterone receptive.

Invasive lobular cancers represent 1-in-10 breast cancer cases. They form in your milk glands and therefore, usually do not present as lumps. They present as a thickening of the breast.

When these cancers break out of the lobule, they do so in single file then invade the surrounding tissue in a web-like manner.

At this point it hits me that cancer is an animate, living thing. It’s like a life form within a life form. For a moment, I’m fascinated. In a way, there is a certain fecundity to this phenomena - a pressing forward.

This is the beginning of my understanding of why this disease is usually paired with the imagery of battle. These cells are not indiscriminate. They have shape and pattern. They advance in formation, gathering strength with each advance.

I have an enemy within; it is living and breathing.

My friend Mary was diagnosed with breast cancer in 2008. She’s already given me this to work with: to imagine these cells as ‘Aliens’. She became a fan of Sigourney Weaver. She visualised beating these bastards. Already, I hate these fuckers.

And it’s important I understand them. I begin my research and start with understanding the risk factors.

Of these, I suspect only one and only because my grandmother died of stomach cancer.

Inherited genetic cancer syndrome: this is a rare, inherited condition called hereditary diffuse gastric cancer syndrome, which increases the risk of both gastric (stomach) cancers and invasive lobular carcinomas.

I have no medical background but that’s my intuition. So far, it’s been spot on.

In a way, this makes me feel better. It makes me realise that I cannot blame my diet or my lifestyle. I cannot blame my desire for nice-smelling armpits or my love of a rump steak.

I can’t blame underwire bras or those soccer balls I took on my (plentiful) chest.

I can’t blame Mortein or mobile phones, Mr Cadbury, Bundaberg Sugar or Johnny Walker.

I can’t even blame the Government (although, of course, I’d love to).

There is no interplay of myth and mystery here, no hocus pocus nor sleight of hand. It is simply science.

It has happened and there is no way left but forward...

CLOSE UP ON DOOR: as it REVEALS an inhuman silhouette standing there.

It is Ripley, WEARING TWO TONS OF HARDENED STEEL. THE POWER LOADER.

She lifts the arms horizontally beside her and stomps out...the massive feet CRASH-CLANGING on the deck. She stops midway to the Queen.

RIPLEY Get away from her, you bitch!

TIGHT ON QUEEN: as it hisses with pure lethality. Newt looks out of the flooring at Ripley

Ripley moves the arms up for combat, both in swinging positions and takes two steps.

The Queen screeches and charges. WALLOP! A roundhouse from one great hydraulic arm catches the creature on its hideous skull, slamming it onto the deck. The Queen gets up and Ripley hits it again with the other arm, sending it sliding into some heavy cargo boxes.

The alien rights itself, standing in a lethal stance. It hisses violently, clearly really pissed off.

Ripley swings around, positioning herself toward the Queen.

RIPLEY (screaming) Come on!

Tuesday, October 4, 2011

LIFE LESSON 1

It’s a beautiful day and I realise how important it is to have a normal day.

So I happily leave for my meeting with a client. I have a new writing project, a rather complex website and I’m looking forward to it.

At this point I have to confess that I have contrived a bit of ‘spin doctoring’ on my situation.

The meeting I had today was meant to occur last week but I was in hospital. So I rescheduled for today, saying only that ‘I have an illness in the family’.

Do my clients have to know it’s me who has the illness? There’s no need for my personal details to muddy my professional life is there? Besides, I don’t feel sick. Not yet.

When I arrive at my client’s premises today, she’s keen to know the nature of the family illness, but before I can answer she’s filling in the details herself. She says she knows how hard it is when a family member becomes ill. Her mother-in-law has a lung condition.

‘Oh I know,’ I empathise. ‘My father-in-law has emphysema’. And so from there, a half-lie is born. I’m introduced to another member of staff and the story is that apparently, I was at the hospital bed of my father-in-law last week.

That’s the way of storytelling I suppose. The audience fills in the blanks.

Please note: I didn’t tell a lie.

The meeting is a success. I feel a little guilty but figure that hey, I’m a copywriter and I don’t need my boobs to write with do I?

Still, already I have learned that there is often secretiveness around an illness. Since I launched my blog, I’ve been surprised to hear of many of my friends and acquaintances who have dealt with illness, but I didn’t know.

Perhaps that’s why people have generally been surprised that I’m writing about this. I take it that it’s unusual.

Why is it we are supposed to be ashamed of being sick? Does it mean that if we unmask our vulnerabilities we’ll feel exposed? Perhaps to judgement? Or exclusion? Or pity?

Personally, as I hope you’ll understand, I fear none of these things. We are, all of us, mortal; and frankly, we all have our barrow of shit to wheel up the mountain at some stage, don’t you think?

I’m pondering these thoughts when I arrive home. I have a package from the Breast Cancer Network. In it is the bra Jenny promised, a diary, lots of information about cancer and a hot pink sports bag emblazoned with the words ‘My Care Kit’.

This is a parcel not of things or paper. It is a parcel of compassion, and I am truly grateful (that bra is damn comfortable).

And with this parcel comes one of my most important lessons so far: becoming ill is in part, a journey in learning about how wonderful people are.

From friends to acquaintances to complete strangers who run organisations like Breast Cancer Network Australia (BCNA), to people who fundraise for those organisations, to governments who fund research, never for one minute doubt that, as a human being, you are important to someone.

We live in a world where we are constantly bombarded with negative messages that make you angry or sad or depressed.

They are messages about terrorists and dictators and murderers, about crooked politicians and fraudsters and thieves, about the things that go wrong and the things we can’t fix and the things we should be angry about.

But even so early in the piece, being ill has taught me that there is a wonder