Month: January 2015

All on Red

Over the past two and a bit years, I have had many, many conversations that I could never have imagined myself having. I’ve talked to doctors about a lump that in my heart I knew was sinister, I’ve talked to other doctors about my prognosis and five-year survival chances, I’ve talked to my husband about how good his financial position would be should I die, and I’ve had a conversation with my then four-year old son about whether I was going to die.

I’ve had conversations with my parents where I’ve tried to convey to them the seriousness of my illness, and failed, because no loving parent is wired to be able to accept such devastating news about their child. I’ve had conversations with my friends about the role I’d like them to play in helping my husband and my child should my death be imminent. I’ve had a conversation with my insurer about the status of my health, and discussed the nuanced differences between being ‘treated with curative intent’ and ‘curable’.

I’ve had conversations with an old school friend, who I met up with after 25+ years when we were both diagnosed with cancer. I’ve had conversations with researchers who are trying to find out more about sporadic breast cancer, which is the type that is not related to genetics – the type that kills the most women. I’ve had conversations with myself – many, many conversations, most of them silently in my head in the darkness before dawn – about the hows and whys and what ifs of my situation.

The weekend just gone, I had a conversation that was so brutally honest that my throat still feels like it’s on fire from the words that I pushed out. I was walking along a footpath in Melbourne, with my friend Jules, who is a mother, writer, self-confessed bogan bon vivant and writer of extraordinary talent (we wrote this post together). It was a glorious, temperate Melbourne afternoon and we could feel the sun on our backs each time we walked out of the dappled shade. We had to keep stopping for Jules to rest, because she has bowel cancer which has spread to her liver. But as we walked, and paused, and walked and paused again, we never stopped talking. Words flowed out and as they came from both of us, I could feel them swirling about inside me, and I wondered if Jules felt the same, but I didn’t want to sound like a dickhead, so I didn’t ask.

During that conversation, Jules told me that she couldn’t just be alive, that she needed to live, and to live, she has to take the most enormous, terrifying risk of having a surgery where there is a 50% chance that she will not come out alive. At that moment, I turned to Jules and said ‘You are going to put it all on red’. And she quietly repeated my words ‘All on red’ and we continued to amble slowly up that tree-lined street. It occurred to me later that maybe drawing a gambling analogy was probably a little bit tasteless in the circumstances, but as it happens, Jules let me know via this blog post, that the flow of words between us, our conversation, had meant something to her.

Jules, you got me despite my inability to draw situation-appropriate analogies. Whatever, wherever, whenever, you are Julia Watson and you are a fucking legend who’s putting it all on red. There is no other way to end this post, so here he is for your listening pleasure:

 

Bitchy Cake Face

The weekend just gone was an amazing one for me. It started on Friday morning at Brisbane airport, when I sent somebody I’d never met a photo of what I was wearing so she could recognise me in the crowd. It ended with the two of us hugging goodbye at the same airport late Sunday afternoon. It was a hard, tight hug, the sort of hug you give someone who means the world to you, but that you may not see again. It was a cancer kind of hug.

In the middle of those two airport scenes were three days of love and laughter and tears and pain and life. I went to Melbourne to meet with some of the members of my online cancer support group, called The Cancer Clique. The Clique formed early in 2014, an informal amorphous microcosm of life-threatening illness and tits and arse jokes disguised as a private Facebook group. Day after day, night after long, unforgiving night we posted about treatments, side effects, funny stories, myriad fears and terrible, awful, unclenching pain. And then someone suggested we meet, in the flesh. I immediately said yeah! But then started having second thoughts because, well, weirdos on the Internet. But I talked myself around, assured that no-one on the Internet could be that much weirder than me, and booked my flights.

So what happened on this weekend? Lots of things, too many and many too private to mention here. But I do want to share my top five highlights:

1. Friends in Need …

This is my beautiful friend Deb, who was stuck in hospital and unable to come to high tea at the Windsor. So we bought high tea at the Windsor to Deb, in the form of pilfered scones wrapped in a napkin. And because nothing says friendship like letting someone touch your prosthetic boob, Deb copped a feel.

deb and julie

 

2. The Official Awkward Silence Count

Zero. Eight people who’d never met before in person, very limited alcohol (it’s a liver cancer thing), hours and hours of unbroken time together, and not a single awkward silence.

3. Show Me Where It Hurts

Not everyone with cancer is bald, or pale, or thin, or sickly. In fact, many of them are bloody gorgeous. Because it can be difficult to judge someone’s state of health from just looking at them, it is sometimes necessary to ask them to show you where it hurts.

tits and arse

4. No Lies

Honesty is the manure of human relationships. It can be stinky and unpleasant to work with, but it makes the garden grow and grow. We talked about death, and dying and life and living, all with complete honesty and a fucking giant dose of black humour.

jo and julie

5. Bitchy Cake Face

I invented a new thing. It’s called Bitchy Cake Face, or BCF for short. It’s similar to bitchy resting face (when your ‘normal’, unsmiling face makes you look like a bit of a bitch), but it’s directed at cakes. I love cake like a fat kid loves cake, but my face most definitely does not show it.

bitchy cake face

When I got in the car to drive home from the airport on Sunday, this song came on the middle-aged lady radio station I listen to. The aptness took my breath away for a second or two, and then I sang along, loudly, and thought about all my weirdo internet friends. Deb, Megan, Jo, Emily (who took the amazing photos I’ve used on this page, apart from the first one), Jules, Antoinette, Sherie and Natalie, this one’s for you.

Freezing My Phantom Tit Off

There are lots of things you don’t know, until you do.

In Australia, around 5,000 women have a mastectomy annually – mostly to remove cancer, the rest to pre-empt cancer. That’s about 0.02% of the population. So whilst there are a few of us around that know what I’m about to share with you, it’s not exactly trending on Twitter.

People of the Internet, there is no easy way to say this, so I’ll get straight to the point. I have a phantom tit. An appendage apparition.  A spectre chesticle. Although my right breast was chopped off more than two years ago, it still feels like it’s there. If I get cold, it tingles. If my hormones are raging, it hurts. And worst of all, it gets ridiculously itchy, particularly the nipple. It itches exactly where the nipple used to be, so if I were to attempt to scratch that itch I would look like I was playing air violin.

Last night it was itching like crazy. Imagine the itchiest of itches, that literally cannot be scratched. I was a bit beside myself with it, so posted a whinge in my cancer support group. One of my friends did a quick Google and came back with the advice that I should put an ice-pack on the scar site, or failing that, give the area a good slapping.

koala meme

Clearly the whole slapping thing had been dreamed up by some very disturbed individual out there in the ether, so there was nothing for it but to apply the ice-pack from my son’s school lunch box to my nebulous nork to ease that itch. I’m happy to report that it worked a treat, and after about 10 minutes of ice action, I was freezing my phantom tit off.

#choppedoffboobshavefeelingstoo

Music to My Ears

At the end of the school year – last year, bloody hell how did 2014 become last year so quickly? – my beautiful boy got a lovely report card which reflected how much he enjoys learning and being in the milieu of a busy classroom. I was particularly pleased to see that his ‘best’ result was for ‘The Arts’ which back in the olden days we used to call ‘Music’. He has been learning piano for almost two years now, and at the ripe old age of 6, can read music confidently and knows his Beethoven from his Mozart. Because my husband is a teacher and I learn lots about education from him, I know that music training has been shown to enhance spatial-temporal reasoning (the ability to picture a spatial pattern and understand how objects can fit into it) and mathematical ability (I know what it is, but I sure as shit don’t have it). But I think of equal importance is the positive impact that an appreciation for music and art and literature has on us as individuals, and our society as a whole.

I loved music as a child, and by the time I was in year 6 (in those days the second last year of primary school in Queensland), I was in the school choir and fife band. I stood in the back row of the choir, because I was very tall for my age, and would sing my little heart out in glorious almost-harmony with my classmates. The fife band was my real love, primarily because it involved a fancy uniform of gold jacket with epaulettes and a box pleated green skirt with knee-high white socks and shoes. We also got to march in the town’s annual parade, and go to various marching band competitions around the state, which was almost exactly like an episode of Glee except that we were all actually school children with mediocre talent and not 25 year old professional musicians, and the grooviest song we ever got to play was Mull of Kintyre, which let me tell you, despite what the title might suggest, is not a song that’s going to be covered by Kanye West any time soon.

kanye meme 2

Like my son, I loved school and school loved me. I was a bright kid who got away with chronic laziness by being blessed with a ridiculously good memory. I was good at sport (represented the district in both softball and basketball), and was happy, well-adjusted and liked to do the right thing. In May 1980, the local eisteddfod was held, where hundreds of children from all the schools in the area would compete in musical and dramatic competitions. Our school choir was entered, and we rehearsed our two songs for months before the big day. Our event was held in the evening at a big local church hall, which smelt of felt tip pens and 4-7-11 because it was mostly used for bingo.

There were about 15 schools competing, so those schools waiting for their turn were sat in rows in the audience. In the row in front of where I was sitting was a crew of boys from another school who were turning around and pulling faces and saying nasty things for what seemed like interminable hours. I finally reached the end of my tether with these boys, and decided to retaliate by working up some static electricity by rubbing my school shoes on the carpet vigorously, and then zapping them in the back of the neck with my finger. Just as I did this to the first tormentor, our music teacher and choir mistress Mrs Hooper appeared at my side to lead us up to the stage. She became so instantly enraged by my behaviour that she leaned down and did one of those whispering yells into my ear, where there was hardly any sound but spittle flying everywhere. She told me to stay in my seat because my appalling behaviour meant that I would not be allowed to perform with the choir. So there I sat, as the rest of the choir filed onto the stage, devastated and sobbing silently to myself.

You might think that’s where it ended. Fairly significant punishment right there and then for what was probably a pretty minor incident. But you’d be wrong. I hardly slept that night, full of remorse and sadness, but went to school the next morning thinking that it was over and done with. As I was walking across the school yard towards my classroom, I was confronted by Mrs Hooper, who still appeared to be as angry as she had been the night before. She stood looming over me, with her big 1980s hair, and proceeded to deliver to me, an 11 year old child, a torrent of terrible abuse. She told me I was ‘a stupid, fat, idiot girl’ who was ‘an embarrassment to myself and my school’ and should be ‘ashamed of myself’. She then summarily kicked me out of both the choir and the fife band, and told me that I would not be missed because I had ‘no musical ability anyway’. I am not making this shit up, and I am not taking liberties. 34 years on, I remember her words exactly – I remember her face, her voice, and her complete and utter contempt for me.

I walked straight to my classroom, but I said not a word to anyone, such was my shame. I was shaking with fear and the utter humiliation of it, but got on with my work, which to rub salt into the wound, was maths. Long division, or in my case, very fucking long, and usually wrong, division. Somehow though, my classroom teacher, the wonderful Mr Moor, found out about my run in with the hideous Mrs Hooper. He took me aside after morning tea and asked me what had happened. When I told him, his face kind of melted into a mask of poorly disguised anger combined with sorrow, and he knelt down so he could look me right in the eye, and told me that I was ‘a good person and a good student’.

I’m not sure what happened after that, but probably nothing, because this was 1980 in a public school and you’d have to set fire to the principal’s poorly-disguised wig before your parents would be called, so Mum and Dad were none the wiser. Mrs Hooper continued as the music teacher, so I would see her every week for a half hour lesson with the rest of the class. She never spoke to me, or even made eye contact with me, and I remained utterly terrified of her. I never again sang in a choir or a played in a band, although the following year, when I was chosen as School Leader, I felt that maybe she had been wrong about me.

Today, as a 45 year old woman, I know she was wrong about me. But I can still recall those words, and the sentiment behind them. Music teacher’s revenge – the ultimate ear-worm, her words got into my head and I’ll probably always carry them with me.