Three Steps Back

This Breast Cancer Awareness Month guest post was written by Aunty Annie, and was originally published on her blog Fighting the Freeloader. Please go over to Annie’s blog and have a look around, it is a fabulous read – so honest, open and funny.

It’s while I’m running the filleting knife down the rib cage of the freshly slaughtered turkey that the analogy hits me between the eyes.I am, for all intents and purposes, performing a posthumous mastectomy on this poor creature.

It’s hard to get every last scrap of flesh off those ribs. The only thing at stake, in this case, is household economy and my own idiotic perfectionism; the older I get, the more I become aware of my underlying OCD. DrGoodguy, on the other hand, would have been leaving me vulnerable to recurrences if he left a single strand of breast tissue in place.Just as well he’s the surgeon and I’m the amateur butcher.The knife slips, slicing into my left middle finger. Fuck. I’m covered with little nicks, thanks to the Lyrica making me sleepy and uncoordinated. I reach for yet another Band-aid, pushing away the knowledge that I’m meant to avoid breaking the skin on any part of that arm.

This is reality. I can’t sit here swaddled in cotton wool for the rest of my life. We still have to eat.

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The human breast that Dr Goodguy filleted away two weeks ago is definitely better gone. My ovaries were as pure as the driven snow, and for that I’m immensely grateful; changes there are symptomless and frequently deadly. But the pathology on my right breast did show some small aberrations – not anything that could be classed as pre-cancerous, nothing to cause undue concern, but any changes at all make me damn nervous after the year and a half of crazy I’ve endured. I think of the white spots on my last mammogram, which didn’t set off the alarm bells in anyone but me, and know that we’ve cut off the Freeloader at the pass this time. He won’t be slipping any messages into Paul Revere’s saddlebags, bound for my lymph nodes, before we even know he’s arrived.

And there’s that, isn’t there? My last mammogram. I have no regrets about a future in which my sexual parts will not be slammed between two icy plates and flattened till I wince. For long, long minutes.

Honestly, men complain about a finger up their arse to check their prostate? Been there, mate. No comparison. Come, let me take my hair straightener out of the freezer and apply it to your nuts, and we’ll talk.

But I digress.

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There are things I’d forgotten about post-mastectomy recovery. The scales tip this way and that; to balance the load of crippling fear I carried through the last mastectomy, I have my brand new and total lack of tolerance for being ill or incapacitated. In hospital I ran on equal parts of adrenaline and denial, refusing pain killers completely by the second morning so that they sent me home on day three with nothing but a drain bag and a cheerful wave. It felt like a win.

Bloody-mindedness continued to be my friend for some time. I spent the first day at home sort of in bed relaxing, then normal service was resumed as I started to cook and do a few chores around the house. Realising I wasn’t sleeping all that well – I blamed the annoying drain in my side, which made lying down singularly uncomfortable – I dug out an old packet of Targin and started dropping one each night.

It didn’t help much, but still the penny didn’t clang on the bottom of the piggy bank and bring me to my senses.

Day seven, and the drain came out with a cheerful ‘see you in six months’ from Dr Goodguy. I am Superwoman! Nine days out from the operation I was walking four kilometres to our creek and back on my own, bush-bashing and climbing trees on the way.

And still not sleeping.

Well, that was only to be expected, right? I haven’t been able to sleep on my left side since the axillary clearance – the ache in my arm becomes unbearable within minutes if I lie on it. And obviously my right side was going to be sore after being filleted. I’m really not a back-sleeper – I’ve always curled up on one side or another, or even slept face-down (not an option at present). So of course I wasn’t sleeping well.

Ten days out I started to crash, as the sleep deprivation hit me. It finally struck me that the pain over my new scar was getting worse, not better. I checked for redness, but no – it all looked perfectly normal. But anything touching the wound was agony, and that included clothing. (Sadly, running around nude in the middle of the Bungy winter is not a viable option unless I want snap-frozen spare ribs. Very, very spare ribs.)

But wait. Anything touching… where have I heard this before?

I’d forgotten about the nerve pain that accompanied Round One, making it impossible to even rest my poor gutted wing on the arm of a chair. I’d forgotten about it to the extent that I didn’t recognise the sensation that was driving me crazy as nerve pain, simply because it was in a different place – under the arm and across my chest, rather than running down from shoulder to elbow.

And so, back to the Lyrica, which makes sleep possible at night and turns me into a zombie by day. If I only take the evening tablet, I can sleep at night and sort-of function during the day.

Sort of. If I don’t count cutting my fingers to ribbons while processing a turkey.

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Along with the zombie mode which lasts well into the morning, along with the deep reluctance to get out of bed, comes the Black Dog sniffing around my heels. You’re failing, he snuffles. You’re backsliding. You’re lazy. Knowing it’s bollocks doesn’t help me when I’m this flat. I can’t even shout at him.

I know exercise would help, but I just can’t find the ergs. Riding my bike seems too risky; breaking the scar open would set my reconstruction plans back to zero. Walking seems too slow to make a difference to my mood. My motivation feels like it’s gone in the incinerator with my fine sections.

I get on the scales to see how much ground I’ve lost, but of course I’m well over a kilo lighter thanks to the missing breast; small comfort when your two steps forward are surgically achieved. Should I be trying to lose the rest of this weight? Should I say fuck it and just turn back into a pile of lard on the couch? Should I try to find the middle road and somehow maintain this weight till the reconstruction surgery?

And that, of course, is a whole new can of worms to deal with; another surgery, at this moment, seems as desirable as an anchovy and Vegemite sauce on my ice cream sundae, but I know it has to be arranged. My reconstruction requires a whole day in theatre, and if I don’t book that theatre well in advance I’m screwed. Within a week of the mastectomy I’m on the phone and lining up the reconstruction for November 21st.

“What’s the hurry?” grumps the Bear. “You’ve just been through one surgery. Why the rush to put yourself through it again?”

Because I hate the way I look. Because I’ll have to pay another excess on my health insurance if I wait till next year. Because I want this to be over. I have many genuine, heartfelt and logical responses, but none of them fix the real problem at the heart of this conversation: my Bear is at breaking point. He’s had enough. Three rounds with the Freeloader in his life, killing and maiming his women, and he wants it to stop. No more hospital, no more anaesthetics, no more surgery and recovery and watching people he loves in pain. He’s started to believe he’s cursed. He’s started to believe he’s caused it somehow, and seeing me go through this shit all over again is undoing him.

“You’re not your boobs,” he says to me. “You were blessed with wonderful breasts and I enjoyed them, but they’re not you. It’s you I love.” And he’s saying all the things a dream man would say in these circumstance, and I can’t fault a word of it, and it’s never going to change my mind. Because that’s how I am. My body, my decision.

I’m even dreaming of having breasts again. I wake devastated to find it was just my subconscious playing tricks. I drag myself to the bathroom, look at the wasteland of my chest in horror. The slashes, the knobbly ribs- I look like a goddamned turkey carcass. I may as well feed myself to the dogs and be done with it.

Dressing to go out, I put on an ah-bra and the old teddy bear tits long before I should be putting any pressure over the wound- just to feel normal, just so people don’t stare, just so I don’t hate my own reflection. At the end of the day they’ve ridden up to my chin, and it’s hilarious and ridiculous, and under the laughter I feel like a freak.

And so we’re sinking together, my Bear and me- him from sheer emotional exhaustion, me under the weight of our combined physical and mental pain and my desperate attempts to keep our relationship from imploding. One step forward, three steps back.

Throw me a lifejacket, someone.

Happy Cancerversary Baby

Got you on my mi-i-ind …

Those of you who grew up in Australia in the 1970s will get that reference, and for everyone else, I present the fabulousness that is Little River Band:

http://youtu.be/nUiEgaEy3As

OK, now I’ve gotten that out of my system, I want to talk about the fact that it’s two years today since I was told I had breast cancer. You may be forgiven for being a little confused, given that today is the 5th of October but since I started this blog I’ve been banging on about how I was diagnosed on the 12th October. Turns out I got my dates mixed up. You may wonder how I could be confused about such a defining moment in my life. I suspect it’s a combination of having never been good with remembering dates, chemo brain and the 12th sticking in my head because that was the day that the surgeon who chopped off my breast and cut out 16 of my lymph nodes told me that he thought my cancer was terminal (turns out it wasn’t, but you can imagine why that date would stick). Anyway, I was really happy to find out that the 5th is my actual cancerversary, because it means that I am 7 whole days closer to still being alive at the five-year mark, and if I’m still alive at the five-year mark, I have the same chance of dying as the rest of the population. Yay!! Check me out finding the positive in the most horrendously negative situation. Fuck you cancer!

So, here I am, 730 days on. I’m not dead, and as far as I know, I’m not dying. 730 days ago, I had no idea whether or not I’d be alive today. 730 days ago I thought everything had been taken away from me. 730 days ago I wondered what I had done to deserve this, but 729 days ago I realised that I’d done absolutely nothing, because my cancer, like most cancer, was sporadic. Sporadic means no family history, no major risk factors, no exposure. As my oncologist told me, shit happens. I can’t tell you how much better that made me feel.

So much has happened over the past 730 days. First there was sheer terror, then pain and loss, then sickness, anger and grief. Then happiness re-emerged and hope showed up, at first just a tiny glimmer caught on the edges of my periphery. Hope is still fleeting, it comes and goes as it pleases; some days there’s no hint of it and I am cold and angry and curled over myself into a hard ball. Other times it comes, seemingly from nowhere and bathes me in its warm light, and I bask in it like a cat in the sun, turning my face to it and stretching my body in languid joy.

731 days tomorrow, and counting. Looking forward, but always knowing that the present is a gift.

Common Thread

Alyson Baker is an artist who was diagnosed five years ago with breast cancer. Alyson’s contemporary works are metaphorical images that depict the experience of coping with breast cancer. They include sewing, knitting and needle felting as well as watercolour painting – as a feminine response to research with other women who have experienced mastectomy and reconstruction for breast cancer. Alyson hopes that her work will create some form of therapy for women affected by breast cancer and increase awareness within the wider community. You can read more about Alyson and her work on her website.

The common thread is that we all struggle. Mine was losing my breast to cancer. Not knowing what to expect was like being thrown into the deep end. I still feel grief, as the thought that part of me is gone haunts me.

When I tested positive for breast cancer, my greatest fear had been realised. A subsequent visit to the surgeon confirmed my fear; I was going to lose my left breast. I was devastated.

At the time I was studying Fine Art at the Queensland College of Art and the theme of breast cancer started to seep through everything I did. Unbeknown to me it became a form of therapy – a way of coping emotionally.

For the past five years after my mastectomy for breast cancer I have explored the emotional struggle. My art works are metaphorical images of this struggle. It has taken the form of paintings, drawings, knitting, felting, crochet, sewing, video performance art and audio. Along the way I learned of other women’s struggles; my artwork also tells a story of their struggle and the emotional upheaval that breast cancer has on a person’s life.

The frustration of not being able to make a knitted breast on my first attempt resembled the frustration I and other women had experienced. The knitted mistake hints at the emotional upheaval – of falling apart, becoming unravelled and turned inside. Trying desperately to recreate what was once there.

I created a knitted breast modelled on my own breast size. It was important for me to come to this resolution; it reflects my own acceptance of breast cancer, mastectomy, breast reconstruction and ongoing monitoring.

The lone breast represented the body part lying in a laboratory. It was needle felted, a process of poking and prodding, similar to the way a patient feels poked and prodded.

When the doctor told me that my breast was in a laboratory it set me in a spin; part of me was 100 kilometres away sitting on a cold stainless steel tray. I also found an article about a woman who asked for her amputated breast so that she could bury it – as a way of finding some sort of closure. This inspired my work Mastectomy Memory a performance art using textile art, disolvable paper and poetry.

“Mastectomy Memories Verse” 2012
Extracts from Poetry written by Alyson Baker during Drawing Investigations

All through the night
And all through the day
A ghost walks with me
Like a shadow on my way

A past never to remain
A moment in time
In an instant erased
A concept of mine

How easy it is to reflect
On memories of old
A diversion to confronting
Emotions that unfold

How is it possible?
How can it be?

That my lover can no longer kiss
This place that I miss

What sense does it make
From knotted pieces of string
Metaphorically told
In poetic rhyming

A ceremony yet not candle lit
A cup empty where a breast would sit

The seasons come and go
And yet I am still here today
And through the haze
Creativity will raise

So hide in the shadow
Or dance in the light
Shrouded in darkness
Or dipped in sunlight

Where there is life
There will be hope

Now my greatest fear now goes beyond any expectation that it may return. I have a daughter and a family connection to breast cancer. Mum, Grandma and I all have had breast cancer; my Grandma passed away at 41 leaving three children. Mum and I were lucky enough to survive. My husband’s mum was not so lucky, she passed away in her 40s leaving Tom, Andrew and Ann without a mother. As a parent I would do anything that I could to spare my own child from this horrible disease.

My future work will be explored during my Honours in 2015 where I highlight the innovative research being funded through the National Breast Cancer Foundation which does not seem to have met with much media attention. Nanotechnology presents the best hope. Ultimately through this research treatment will be individualised, more effective and less invasive. The aim is for zero deaths from Breast Cancer by 2030. To help achieve this goal please donate to NBCF.

What Cancer Looks Like

Welcome to Breast Cancer Awareness Month, where breasts are actually optional. Over the coming weeks I’ll be sharing this blog with some other writers, but I’m going to kick off the month with a post of my own, because after all, it is my blog and therefore all about moi.

This is what someone who has cancer but doesn’t yet know it looks like:

September 2012, on holiday at Noosa. The week before I’d had a mammogram, ultrasound and biopsy which had come back as ‘atypical cells’ which the GP told me usually meant normal cells which were squashed in the process of taking the sample. I was sent for another ultrasound and biopsy three days after this photo was taken. No, they weren’t normal cells that got squashed, they were high-grade aggressive cancer cells.

This is what someone who has had a mastectomy looks like:

Yep, pretty much exactly the same as the before cancer shot. By this stage my right breast and all of the lymph nodes from my right armpit have been removed, and I am waiting five weeks for the surgical site to heal before starting chemotherapy. I was so terrified for those five weeks. Terrified at the thought of having to have chemo and terrified at the thought of not having it soon enough. Oh and in case you’re wondering, no, people with cancer aren’t forced to wear the same shirt every day like some sort of uniform.

This is what chemotherapy looks like:

Pretty unimpressive, isn’t it? The green sign attached to the bag on the right says ‘Neulasta’. That was put there each time to remind the nurse to send me home with the vial and syringe which I had to inject 24 hours after chemo. Without the Neulasta, I wouldn’t have been able to have the chemo regime I did. One word typed on a green sign = reason I am alive today.

This is what someone who is having chemotherapy looks like:

I took this on Christmas Day 2012, to get a photo of the gorgeous earrings Dave bought for me. I thought I looked pretty good at the time, but looking at this photo now, I can see that I looked pretty dreadful. The terrible blackness around my eyes, the mottled brown pattern on my cheeks and jawline, the puffiness of my face and of course the baldness of my head were all testament to the poison that was fortnightly being pumped into my poor, beleaguered body.

This is what someone who is having radiation therapy looks like:

Woo hoo, look at that hair! I felt sheer delight when the peach fuzz started appearing on my head. Under that shirt and scarf there were extensive third degree burns which had to be attended to multiple times daily, but I had hair!!

And this is what someone who is 1 year and 361 days on from diagnosis looks like:

This one’s for you, cancer.

October

October is Breast Cancer Awareness Month in Australia. It’s also the month in which I was diagnosed with breast cancer two years ago. It hadn’t occurred to me until my husband pointed it out, that the end of the year, and October in particular, generally tends to be a pretty shit time for us. Upon reflection, he is absolutely right:

October 2006 – miscarriage #1

October 2007 – incredibly traumatic, non-stop bleeding during first trimester of Hugh’s pregnancy. During that month, I had no fewer than eight internal ultrasounds (or dildo-cams as we call them in the business). My uterus could’ve started its own youtube channel.

October 2008 – the exception that proves the rule

October 2009 – miscarriage #3

October 2010 – diagnosed with secondary infertility

October 2011 – miscarriage #4 and Dave’s grandmother died

October 2012 – diagnosed with breast cancer

If I was a superstitious type I’d be starting a petition to have October officially removed from the calendar. But rather than giving into the instinct that makes me want to curl up in a ball and hide for the entire month, I am taking back October. I’m going to be sharing stories on this blog from some amazing, interesting and funny women who’ve also had to deal with bastard breast cancer. I’m also going to be sharing my own story in person, at my first ever speaking gig at the Colour of Change luncheon in Toowoomba, in front of around 200 people [gulp], to raise money for BreastScreen Queensland. I’m going to host a morning tea at my workplace, and guilt my long-suffering colleagues into donating money to the National Breast Cancer Foundation, because I am living, breathing evidence that research saves lives. And on 28 October, even though I will be so full of fear that it will take me several minutes to convince myself to get out of my car and walk into the breast clinic, I’m going to have my annual mammogram and ultrasound, because early detection saves lives.

Here’s to you, October.

Taking Stock

As you probably know by now, I have a very large soft spot for Mrs Woog from Woogsworld, primarily because I think she’s hilarious, but also because she gave me a chance and published something I wrote on her blog, which resulted in me starting this blog. Mrs Woog has taken up the challenge from another blogger (Pip from Meet Me at Mikes) to do some personal stock-taking, and then challenged others to do the same. I do love a challenge that doesn’t require me to shift my substantial arse off my comfy chair. The challenge involves being given a set of words, which you then apply to what’s going on in your life so it becomes a stock-take of sorts. Possibly not the kind of stock-take I am normally attracted to because the word ‘sale’ is missing, but let’s give it a crack.

Making: Plans for all my guest posters to share their stories for Breast Cancer Awareness Month in October. There’s still time to put your hand up to be involved.

Drinking: To my shame, a glass of diet fruit cup cordial with dinner every night. During chemo I developed a complete and utter distaste for water (it tasted like vinegar – apparently quite common) so I started drinking cordial to stay hydrated. Cue unshakeable addiction to a drink universally loved by 3 year olds. I don’t frequent bars, but I do love a kid’s birthday party.

Reading: I read alllllll day for work – plans, reports, studies, emails. What have I learned from all this reading? People don’t understand how to use apostrophe’s. (See what I did there? It hurt me.)

Wanting: A week off to sleep. I am tired.

Looking: At caravans. I have long-held a desire to own a caravan, park it at Coolum Beach, and live there for the summer.

Playing: Words with Friends. I win some, I lose some.

Deciding: Whether or not wanting a caravan makes me a dyed brown but actually grey nomad.

Wishing: That I could bottle how I felt during my amazing birtholiday in Sydney, so I could crack it open and take a little sip whenever I start to get the shits with the daily grind.

Enjoying: Taking my boy for a hot chocolate at the deli after his swimming lesson every Saturday morning. It’s become our little ritual, they know us by name and always put Hugh’s marshmallows on the side because otherwise he’ll dig them out of his drink with his fingers.

Waiting: For the next season of The Walking Dead to start. It’s so bad that it’s good.

Liking: The fact that today is Friday, and on Fridays a little guy called Bob spends the day at my workplace.

Wondering: How my mammogram and ultrasound will go in October. Oh, and whether my ‘so do I get it half price?’ gag will get a better response at the breast clinic this year than it did last year.

Loving: These two. I honestly never knew that such love was possible, until I was lucky enough to experience it.

Pondering: What to talk about when I do my first ever guest speaker gig at a breast cancer fundraiser in October. Any suggestions?

Considering: What shoes to wear to above-mentioned first speaking gig, then realising that if people have noticed what shoes I’m wearing, this may also be my last guest speaker gig.

Watching: Utopia on the ABC. Advertised as a comedy, but if you’ve ever worked in a government department, it’s more like a documentary.

Hoping: That Hugh’s multiple ‘melted poos’ that commenced at 4am are the result of a dodgy chicken nugget and not some dreadful contagion.

Marvelling: At the interesting, clever, hilarious and loving human being Dave and I created. He can be a little shit too (quite literally today), which is considerably less marvellous, but on the whole, he is a mighty, mighty kid.

Needing: These earrings, in multiple colours. Perfect for those of us with super short hair. 10 bucks from Lovisa.

Hoping to start a trend of ear selfies. #eresmyear

Smelling: Coco Chanel. I’ve worn this for nearly 20 years, and never tire of it.

Wearing: Sensible shoes. Pair those with my caravan love, and it’s painting a pretty sexy picture, am I right?

Noticing: How long my hair is getting. I’ll be seeing my fabulous friend and hairdresser Tracy next week to get the greys and the length sorted. I want to stop for a moment and tell you about Tracy. She was so kind to me when I was diagnosed, spent lots of time cutting my hair gradually shorter and shorter (and would never take any money for it) and then when my hair came back grey and crazy with a mixture of curls and spikes, she told me I looked like a stylish Parisian which was just about the best thing you can say to someone who’s been bald for seven months. A few weeks after Tracy gave me that compliment, I sent her this photo of my hair first thing in the morning. I still can’t believe she didn’t want to use this on her website.

Chemo hair, what chemo hair?

Knowing: That one day I will regret posting that ^^ photo on the Internet.

Thinking: About my friend Deb, who had her first visit from the palliative care team yesterday. No words Deb, but so much love.

Admiring: My ability to keep going with this challenge, despite the fact that I thought it would be easy but it’s actually quite hard.

Sorting: Stuff in my mind.

Cooking: A cake for a work colleague’s baby shower. What do you think?

Buying: Well it was going to be hot chips for lunch. But suddenly I’m not hungry, and especially not for cake.

Getting: Excited that it’s 58 days until we go to Thailand for a holiday. Not that I’m counting.

Bookmarking: My friend Julia’s brand new blog.

Disliking: The size of our electricity bill, and the fact that a single provider has a monopoly on our suburb, so will continue to shaft us royally for the foreseeable future.

Opening: My mouth at lunch time to shove those hot chips in.

Giggling: At Hugh’s use of the term ‘melted poo’ to describe diarrhoea.

Feeling: So pleased that I have my online cancer support group. Before becoming a part of this group, I had no idea that online friendships could be so real. But they are real, and honest, and incredibly meaningful.

From the Jeff Fenech lolly collection.

Snacking: I purposely didn’t buy any chocolate when I went to the supermarket, so I could not be tempted to snack on it after dinner. Cue last night’s frantic search through the cupboard for anything resembling chocolate, followed by Dave and I eating half a packet of white chocolate melts.

Helping: Myself by starting a gentle exercise plan. My joints are so sore from the anastrozole, but I need to do it. Slowly, slowly.

Hearing: And loving the new Megan Washington album – There, There. Did you see Megan on Australian Story? Fabulous, courageous young Australian artist.

Coveting:

Wishing: I was too cool to admit coveting a caravan.

Anyone else up to the challenge? Caravan porn totally optional.

Looking Forward

Happiness is pretty simple: someone to love, something to do, something to look forward to.

I saw this posted on twitter last week, and because it came from someone who I admire, I didn’t respond with my first thought, which was that’s bullshit. I’m a bit sycophantic like that. I didn’t respond, but I did ruminate for a long while on what it is about that quote (which, incidentally has been incorrectly attributed to about 400 different people, including Elvis Presley and Immanuel Kant) that irks me.

It’s true that those three things are pretty awesome, and I have written about many of them here. I have lots of someones to love – husband, boy, extended family, friends, my dog Roy, George Clooney, and I have plenty to do including a full-time day job, this blog, and binge-watching tv series from the US.

Having something to look forward to is where I get a bit stuck. There was a time, before cancer, where I constantly thought about the future and what my plans were. I had short-term plans for things like my boy starting school, my husband finishing his degree and me taking long service leave from my work and maybe doing some creative writing. I was also looking forward and laying plans for the longer term, for things like where Hugh would go to high school, whether we might move for Dave’s job, preferred destinations for overseas holidays, and whether when we retired we should buy a caravan and do the ginger and grey nomad thing. In the before, I was all about looking forward.

Then came cancer, and suddenly I felt that there was nothing to look forward to, absolutely fucking nothing. Initially, my feelings were based solely on fear, and then when I sat down with the medical oncologist who delivered my prognosis, my feelings about having nothing to look forward to became more solidly based in medical evidence. My chance of living five years past this diagnosis was exactly the same as my chance of dying within that five years. Think about how many trashy movies and tv shows you’ve seen where some handsome doctor in a white coat tells the assembled family that the patient (who is usually in a coma) has a 50/50 chance of pulling through. The wife faints and the children all sob uncontrollably. Now imagine having same conversation, except in real life. The doctor isn’t wearing a white coat (although he is quite handsome) and he’s not talking about someone in a coma, he’s talking about you. He’s telling you that your chances for five-year survival are 50/50. Then try to marry that up with the idea of having something to look forward to.

I could write pages and pages about what it feels like to live under the shadow of a diagnosis like that. How you mentally make sense of 50/50 being bloody fantastic odds if you’re talking about winning the lottery, and shatteringly terrible odds if you’re talking about still being alive in 2018. How you learn to care about trivial things like what’s on tv, and the cost of petrol, and how much of a dick Christopher Pyne is when you have a stabbing pain in your ribs that has no explanation. I could write pages, but I’m not going to, because I’ve discovered that giving those fears and paranoias oxygen just makes them grow, and they are far more easily managed if they’re kept locked away in the dark.

I can honestly say that these days, I don’t think too much about my diagnosis and prognosis. I obviously think a lot about it when I’m writing these blog posts, and that just serves to confirm my theory that blogging is very cheap therapy. But here I am, 23 months on from being told I have breast cancer, and I am again able to look forward with hope. It’s true that I no longer think about my retirement plans, but I have become confident again at making plans in the short-term.

One of my current short-term plans is to use this blog to host a series of guest posts during October, which in Australia is Breast Cancer Awareness Month. I was diagnosed during this month two years ago, and I have been thinking about the ways I can mark the significance. Breast cancer is still the most common cancer amongst Australian women, but every single story is different. Lumpectomies, mastectomies, axilla removals, oestrogen positive, BRCA1/2, triple negative, herceptin, radiation, reconstruction, devastation, triumph, loss, love. There are endless permutations and combinations; for every woman who gets the diagnosis there is an individual story. I’ve put the call out on the Boob in a Box Facebook page, and I’m putting it out here again. If you’re a breast cancer person, I want to share your story. You can be out and proud, or you can be anonymous. If you’re not a confident writer, I’m happy to help. All you need to do is email me at cosmocat42@hotmail.com or message me via the Facebook page.

As for the quote that started this post, well to be honest I think I found it annoying because, for me at least, it rings true. Cancer couldn’t take away my somebodies to love or my somethings to do (and in fact it gave me a big something – this blog), but it did take away many, many of the things to which I used to look forward. I’m slowly rebuilding my trust in the future; of course that trust is built on the shakiest of ground because the future is a guarantee for no-one, and particularly not for those of us in remission. I’m doing it though – planning for next month’s blog, booking a holiday to Thailand, talking about Christmas plans, thinking about how embarrassingly loudly I’ll hoot at Dave’s graduation ceremony next year, and wondering about what will happen on the new season of The Walking Dead.

I Will Survive

My boy lost his first tooth yesterday. He’s almost 6 and a half, and his friends started losing their teeth at the start of last year, so he has spent a long time waiting and hoping, pressing at his teeth with his fingers to see if any of them were loose. Finally, on the weekend he pressed at a tooth and it did wiggle, and he worked and worked on it until last night, when he bravely grabbed a tissue and yanked that sucker right on out. The tooth fairy left him $3.50 in coins (because she knows he feels like a millionaire if he has lots of coins) which made him declare that ‘this is the best day of my life’.

He has lots of best days of his life as is the way of six year olds who want for nothing in terms of love, time, attention and care. He loses a tooth and his parents laugh and clap, and the little red and white speck is gathered up in a tissue and placed in a special box. He has his photo taken. He speaks to his grandparents on the phone, telling each of them in turn his big news. The milestones of his life, however insignificant they may be in the grand scheme of things, are celebrated with great joy. It is a charmed life.

However this child is also growing up in the shadow of his mother’s cancer diagnosis and ongoing struggle to stay alive. Mostly, he is happy and carefree, but if I have a day off work sick with a cold, he looks at me with fear in his eyes and asks me repeatedly if I am feeling better – it is not really a question, more a bleak search for reassurance. The medication that is, we hope, keeping me cancer-free also makes me sore and cranky and sometimes just totally fucking fed up, and he is attuned to this, trying too hard to be chirpy, wanting to sit close to me, kiss me and hold me. I wonder if sub-consciously he thinks that if he is holding on to me, then he won’t lose me. When he was four, and I was in the middle of chemo, he asked me if I was going to die. I told him no (a lie then of course, and still quite possibly a lie) but I felt sure – because I wanted so very much to be sure – that he believed me. But sometimes when I look into his eyes (which are the exact colour of cool, bush creek where we once camped) I see that maybe he knew I was lying, and just pretended to believe me because that was easier for both of us.

As well as constantly looking for signs that the cancer has returned (headache = brain tumour), I also look for signs that I am going to be one of the ones who gets to survive. The problem with cancer, is that despite all the percentages and numbers and formulas that the medical teams use to come up with your chances of long-term survival, sometimes those who are given a good chance end up dying, and those who are given little or no chance survive. Cancer is unpredictable; that’s its great power and its great mystery, and why the search for a cure goes on. For every three patients whose cancer behaves in the way doctors predict it will, there is one whose cancer does whatever the fuck it pleases, with absolutely no acknowledgement of the millions dollars and hours that have gone into research.

Sometimes I see survival signs within myself – I am happy, I am annoyed, I am laughing, I am snoring. These are all things people who don’t have cancer are and do, so sometimes the mere fact that I am just a bloody average human being makes me sure I will survive. Other times, the signs are around me – my elderly parents increasingly needing my care, my husband so close to taking off in his new career direction, my friend relying on me to help her through her divorce. I must survive to take care of these people, to be the person they need in their life, to show them my particular love. I must survive to see all those baby teeth fall out and the big teeth grow down, and to earn the money to pay the orthodontist bills, because man my kid has some crazy teeth!

Today, I did the ‘Which song was written about you’ quiz on Facebook, the quality of which is attested to by the fact that the word ‘chocolate’ was misspelt in one of the questions. I answered all ten questions with complete honestly (because everyone knows that these things are only accurate if you are truthful), and waited with bated breath as dozens of highly-trained psychologists worked on analysing my responses. And then, before my eyes, appeared the name of my song. Fuck you cancer, I got my sign.

http://youtu.be/PNDl41HfvxI

See-Saw

As I may have mentioned (in my entire post dedicated to it), I turned 45 last Friday. This was my second birthday since the cancer diagnosis, and like last year I made sure I had a fat time (and I mean that literally – thanks to Cafe Sydney, Mr Wong, Balla, Danjee and Red Lantern amongst other amazing Sydney restaurants).

The celebrations involved a fantastic couple of days in a fancy hotel in Sydney with my two dearest friends from high school, followed by another couple of wonderful days with my two boys. Here is a photographic summary of what I have christened my birtholiday (patent pending).

pants too tight

Even though we are home and back to reality, enhanced by the bone-shaking cough Hugh apparently bought back as his Luna Park souvenir, I was still flying high on the joy of my birtholiday today when I was brought crashing right back down to earth. I got a reminder about an appointment I have on Monday. It’s my regular 3-monthly check-up with my oncologist. As soon as I read the reminder, I felt sick. Hot. Cold. Weak at the knees. Teary. Panicky. Worried. Terrified.

I don’t want to go. I don’t want to walk into the Cancer Care Centre ever again. I don’t want to sit in the waiting room, desperately trying not to make eye contact with anyone. Concentrating on not noticing how pretty much everyone else is bald, and that those that do have hair are either in the process of losing it. I don’t want to go into my standard ‘visit with the oncologist mode’, where I do my best impression of the world’s happiest person who will surely stave off cancer with the sheer force of her bubbly personality, whilst internally my fear and anxiety is so bad that I am only just able to swallow down the vomit that is creeping up my throat. I don’t want to take off my jacket, and my top, and my bra, and sit there feigning nonchalance whilst the oncologist does a physical exam. I don’t want to be unable to breathe the whole time her hands are on me, listening to the cancer demons screaming in the back of my mind, trying to convince me that her hands just slowed and that must mean she can feel something. Convinced for the minutes of silence that constitute her exam that I am about to be hurled, again but this time with no chance of escape, into cancer.

I read that appointment reminder and I was immediately taken back to morning in October 2012 when I was diagnosed. I am there, in my lounge room, wearing my bathrobe and saying ‘oh shit’ over and over and over as the doctor delivered the news. I am staring at the faces of my husband and mother who have overheard my side of the call but are waiting, with faces full of blind hope, their eyes pleading with me to say that they have somehow misunderstood, and that I am fine. I am saying those words for the very first time ‘I have breast cancer’. I am sobbing as I look at my four year old, tow-haired boy. I am marvelling to my husband about getting an appointment within my GP within the hour, when it normally takes two days to get a slot, until the reality of why I am now at the front of the queue hits me fair in the chest as we are ushered through the waiting room without a pause and delivered straight to the doctor by the gloomy faced receptionist. That was also the first time I observed what I call ‘cancer face’ – a look that many people (probably quite unwittingly) give you when they find out you have cancer. Cancer face is a cross between pity (for me), fear (of one day being like me), relief (that they’re not me) and denial (both that I may die and they may ever be in the same position as me). Cancer face is very similar to this:

I'm sad you have cancer, but at the same time i really fucking relieved that I don't. Also, tell me it's genetic because if it's not that means it could happen to anyone, and that would be really scary for me.

I’m sad you have cancer, but at the same time I’m really fucking relieved that I don’t. Also, tell me it’s genetic because if it’s not that means it could happen to anyone, and that would be really scary for me.

Every time I think I’ve made such great progress, I am dragged right back. Whole days go by, when I don’t think about cancer. I go to work, get caught up in problems that need to be solved and people who need to be helped, and I am worker Julie. I come home and have conversations with my husband about whether we should buy a new dishwasher and when new series of The Walking Dead starts, and I am wife Julie. I help my son with his homework, and almost burst with pride at his reading ability, and I am mother Julie. Whole days and no sign of cancer Julie. And then, bang, BANG:

A reminder that your next appointment at the Cancer Care Centre is scheduled for Monday, 8 September at 4:20pm. Please bring with you the results of any scans you have had in preparation for this appointment.

and I am right back there, on the ground.

see saw

Alive at Forty-Five

I have always loved birthdays, and in fact I believe I was one of the originators of the Birthday Festival, which extends the celebration of one’s birth out to include the entire month. I love having all my people around me, going to lunches and dinners and parties and eating cakes. I’m not ashamed to say, I love it all!

Birthdays have become especially meaningful for me since my diagnosis. Every birthday I get is a gift (but I still expect presents). This Friday I turn 45; it will be my second birthday since finding out I had breast cancer. Last year my 44th birthday also marked three months since completion of treatment, and my first taste of alcohol in almost a year. I’m not really much of a drinker at the best of times, but this occasion really called for some serious social lubricant. Hence, I had my party at a pub, where my friends kept a steady supply of drinks up to me for the duration.

The drinks looked like this:

And by the end of the evening, I looked like this:

I didn’t get a photo with all of my friends, because earlier on in the day when I was sober and sensible, I was too busy enjoying everyone’s company to remember photos. But here are some shots of some of the most amazing people in the universe and a one-boobed chick.

Me and my husband. Look at the love on my face! Sure, some of it is attributable to Cointreau, but it’s mostly because of the man who lets me rest on his shoulder whenever I want:

My best buddies in the world. The one on the left of the photo flew almost 900 kms to surprise me at this party. I cannot tell you how bloody special that made me feel! The one on the right is The Wind Beneath My Wings.

My dear friend, whose life has rolled out at the polar opposite to mine (eg she was 17 when she had her first baby, I was 38) but who loves me, and gets me, and warms any room with the wattage of her personality. One day we will write a book together. Check me out clutching my non-existent pearls and braying like a donkey:

My friend from uni, who I met in 1987. That’s nearly 30 years people!! She sewed me scarves when I was bald, one of them was made out of a beautiful purple fabric that made me feel a bit less like a pirate when I wore it:

This delightful lass and I met at work, and then spent many an evening with as two single 30-somethings watching crappy television and lamenting the lack of eligible men in our respective lounge rooms. Then I found love, and she found love! Then I had a baby boy, and she had a baby boy! She’s definitely not getting cancer though, I will take one for the team in that regard:

Taking a risk in this shot and leaning over in a v-necked top – the boob out of the box might at any minute land in someone’s drink. The lady on the left I met when we were both about 7 – her parents lived next door to my aunt and uncle. Fast forward 35 years and we work in adjacent offices. During my 8 months off work she regularly emailed me pictures of other people using my beloved coffee mug, just to keep things real. The gorgeous girl in white I used to work with many years ago – she introduced me to the saying ‘I could eat a shit sandwich, but only if the bread was fresh’:

At this point, all of the people who went home before I got the camera out are thinking thank fuck for that.

This Friday I will be in Sydney for my birthday, on a 5-day holiday with my boys and my two best buddies. I cannot tell you how fabulous it was to be 44, and how equally fabulous it will be to turn 45.

Happy Birthday to me!

	Heughligans on When I Think About You …
	Davis on Ride for Life
	Vacationing Vicky on Witness
	Jean S on Fatherhood
	Kerri on Birth, Death, and Everything i…

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Anyone else up to the challenge? Caravan porn totally optional.

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Happiness is pretty simple: someone to love, something to do, something to look forward to.

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