Month: May 2014

The New Normal

The day I was diagnosed, I felt the world as I knew it crumble away. Three words ‘you have cancer’ were like a giant bulldozer that instantaneously came smashing through my life. I had just turned 43, commenced work that week on a major project, my husband was half-way through his career-changing degree, and our son was in his final months of pre-school and looking forward to starting school. I had a lovely life, was happy in the routine swing of the daily business of being and contemplating a future full of promise. But with those three words, all that seemed gone, and what I had left was a great big smashed up mess of what used to be my life, with a giant, steaming pile of shit perched right on top of it.

The fear and shock that comes with such a diagnosis pervades every waking moment in those first hours and days, and in my case it was like a constant buzz in my head, to the point where I was convinced I could actually hear buzzing. Initially I wondered why no-one else could hear it, then I convinced myself, as only someone with newly diagnosed cancer can, that I must also have a brain tumour which was affecting my hearing. Of course I didn’t mention the buzzing to anyone because denial was pretty much the only weapon I had left in my armoury.

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Right up until the point I went in for the mastectomy, every waking moment was filled with the buzzing noise, to the point that I often found myself trying to lip-read what people were saying because the clamour of it was so loud.  Just before I went into surgery, I had a final discussion with the anaesthetist, and the buzzing was almost deafening. But then he said ‘I know you are scared. But this surgery will remove the tumour, and when you wake it up it will be out of your body’, and quite literally, right at that moment the buzzing stopped. I realise now that there was no noise, that it was purely a psychosomatic manifestation of my fear created by my brain. My sub-conscious must have decided that I couldn’t take on board anything more, and the buzzing became like virtual earplugs, keeping anymore bad news out. It was only when that doctor acknowledged my fear that it was able to be quelled enough for my brain to shut off the buzzing.

Once the noise was muted, and a plan of action for my treatment was put in place, it became clear that things certainly had changed. I had been the sole income earner at the time of diagnosis but wasn’t able to work for the eight months of my treatment, and so my husband had to stop studying and find a job. My daily life went from juggling projects, pre-school pick-ups and community volunteering, to treatments, appointments with my medical team, and drug-assisted sleeping. I found out about the vortex of bureaucracy that underpins income protection insurance, and learned that ‘being treated with curative intent’ was the most fist-pumpingly positive phrase that I would ever see written about me by a medical oncologist.

The thing about my life, or maybe about me, that changed the most was my ability to think about the future. When you are being treated for cancer, your world becomes very small as you focus on what must be managed – your treatments and responses to them, and what cannot be ignored – your family. Everything else pretty much fades away, with what you are capable of dealing with in the foreground and the rest pushed so far away you’d need binoculars to see it. You tend to live day by day, and as far forward as you dare look is the next chemo infusion or oncologist appointment. Any thoughts of the future become too uncomfortable to contemplate because, the stark fact is, you might not actually not still be alive in a year. When I was at my sickest, my young son was obsessed with reading a picture book called Mr Chicken Goes to Paris. He would talk incessantly of when we would go to Paris, and what we would see, do and eat. I found these conversations excruciatingly painful, and would hold myself together long enough to humour him with discussions about our possible trip to France, and then later sob quietly to myself in the shower.

But despite all this, I started to see that my whole life had not actually been fucked over to the degree I originally thought. There was still happiness and a developing, new normality. Each night (except for the two I spent in hospital after surgery) I lay in bed next to my husband, soothed by his regular, deep breaths and reassured by the warmth of his skin under my hand. I was still alive, I was still here, and the steadiness he brought to my life was as reliable as ever. My beautiful son was still a source of complete joy with his mix of earnest small boy musings, slapstick humour and love for his mummy … and I still had his Lego to walk on with bare feet to remind me what real pain feels like.


My friends were there like they have always been; involved, supportive and pulling the piss out of me when I was looking a bit too po-faced, as did my work colleagues who took to emailing me daily photos of other people using my closely guarded personalised coffee mug.  I had my third chemo treatment on 17 December, and we hosted fourteen people at our house for Christmas lunch seven days later. The potatoes cooked in duck-fat were bloody delicious, the maple glazed ham stupendous, and I didn’t lift a finger to clean up despite the fact I felt quite ok. The fireworks still went off on New Year’s Eve, they were as glorious as ever and I gasped at their beauty and only once wondered if they were marking the beginning of the last year I would ever see. They weren’t. I’ve seen them again since, with my boy perched on my lap, our cheeks mashed together as we cast our eyes skyward, and this time I didn’t even think about dying once.

For as much as I have lost – and there is a shitload both quantifiable and not – I have been, and continue to be, reminded in myriad ways that I still have so much. And at this point, that (and the actual boob in the box) is the legacy with which cancer has left me. When things start getting taken away, the things that you still have are thrown into sharper relief. Whilst these days I may have far fewer certainties in my life, those that I do have mean so much more. And that is the new normal.


One of the bonuses of going through chemotherapy at 43 was that it caused me to commence early menopause. There are a range of drugs used for breast cancer (the drugs vary based on type and stage of cancer) and many of them destroy ovarian reserve, which in turn causes the related hormonal functions of the body to start switching off. Your period stops, your skin starts to slacken and your bones lose density. Add that to what you’re already going through with chemotherapy, and you are essentially caught up in a giant maelstrom of awful.

A woman who hasn’t had chemo will usually start going through the precursor to menopause, called perimenopause, over a 3-5 year period in her late 40s or early 50s. She’ll then go through full-blown menopause which may take another couple of years to complete. From what I’ve been told, for those women, menopause could be likened to a slow, meandering steam train ride through the end of their fertile years. Some parts of the journey are spent admiring the scenery, some are spent lying down in the sleeper car with a gin and tonic, and some are spent trying to find someone to help you turn down the temperature of the bloody airconditioning.

For those of us who go through menopause brought on by chemo, it’s the same journey but done like an attempt at the world land speed record, where you start off being forcibly pushed onto a bullet train by a conductor wearing white gloves, and get off 45 minutes later in a strange town, minus your ovaries, libido and sense of humour.

picture of a train

All aboard the menopause express.

Menopause is regularly referenced in movies and tv series, so we all know it involves hot flushes and loss of libido (ain’t nothing funnier than a middle-aged sweaty woman with no interest in sex). But whilst these two symptoms are obvious (and awful), my worst symptom brought on by the evil triumvirate of cancer, chemotherapy and menopause has been the appearance of a nasty little gremlin that appears to have taken up residence inside me, and who has a bit of a hair-trigger.

As many people will attest (although not within my earshot, for they have learned their lesson) I go from zero to really bloody angry in about six seconds. I arc up to volcanic proportions over things like the gravy I’ve made being too runny, or not being able to find a nail file in the crap drawer, or the cat wanting to be fed.  As a result, I swear a lot, especially when driving … and working, and cooking, and cleaning, and shopping, and walking and watching tv …  Sometimes I throw things, I regularly compose narky emails to work colleagues which I (mostly) don’t send, and much to my shame I often speak to my poor, long-suffering husband in a less than loving tone.

Got a light?

Got a light?

Nobody else knows this (well I guess they do now!) but I have named my gremlin Seether after the song by the band Veruca Salt. The lyrics go a little something like this:

Seether is neither big nor small
Seether is the centre of it all
I try to rock her in my cradle
I try to knock her out
I try to cram her back in my mouth
Can’t fight the seether

When I am feeling especially uptight, I sing this song in my head (to avoid looking like a total menopausal nutcase in public), or out loud if possible. I picture the little, green, chain-smoking freak in my mind, sing the lyrics, and often end up laughing to myself at the absurdity of it all, which means it’s worked. Most nights I sing it in the shower in an attempt to rid myself of the Seether before I set about relaxing for the night. Boob in box, bit of gremlin visualisation, a couple of verses of Seether and then it’s time for an episode of Call the Midwife. Living the dream, people, living the dream.

Because my cancer was stimulated by oestrogen, I’m unable to take any of the medications used to manage menopause. So it’s a mind game, and my fervent hope is that the Seether will gradually disappear as my body learns to live minus all those fertile lady hormones. In the meantime, I’ll continue to practice my version of mindfulness.

Tits and Arse

One of the words that is used time and time again when discussing people with cancer is dignity. Hospital mission statements tell us we’ll be treated with dignity, we are lauded for our dignity by those viewing us from afar, and if cancer is to cut our lives prematurely short, then we seek to live our remaining days with as much dignity as the ravaging disease will allow. But the truth is that for cancer patients, dignity is something you very much leave at the door with your breast, bowel, kidney or liver …

Cancer brings with it a love/hate relationship with your body. You hate your body because you feel as if it’s betrayed you by allowing the cancer to invade it, but at the same time you feel sorry for your body because it’s being subjected to so many terrible things. Your body becomes something you simultaneously want to escape from and retreat into. The loss of dignity which occurs through so many surgeries, tests and treatments becomes evidence that your body cannot be trusted. After treatment is finished, this feeling lingers.

In a previous post I talked about how when I woke from my mastectomy surgery, I vomitted so much that I wet myself. Fortunately the humiliation of that particular situation was moderated by the massive amount of pethidine I had under my belt, and the fact that the nurses where two girls I had gone to school with some 25 years earlier. If you’re going to pee your pants in public, best do it whilst high and in the company of people who knew you when you thought George Michael was straight. Now that is embarrassing.

My friend Jules has bowel cancer. I had breast cancer. Together, we are the 40-something tits and arse of the cancer world, and have experienced the many and varied humiliations that cancer brings. I’m bringing Jules in here to talk about the indignities of the arse-end of cancer, firstly because she provides a stark insight into the reality of the experiences of a bowel cancer patient, and secondly because apparently the only thing funnier than a fart joke is one about a barium enema.

Jules: Having given birth to four children in the last 10 years, I used to think that childbirth was the biggest assault on the dignity that one could possibly imagine. However, since being diagnosed with bowel cancer, sometimes affectionately known as “arse cancer” 6 months ago, I have learned that childbirth, on the embarrassment scale, roughly compares to leaving a nightclub toilet, shitballs drunk, with your skirt tucked into your underwear.

I don’t know how many times I have heard people say that they avoid going for a colonoscopy because they would be too embarrassed. I’m here to tell you that having a camera inserted into your backside when you are for all intents and purposes asleep, does not even scratch the surface of what comes afterward, if you do, as I did, have a bad result.

For me, it all started when I woke from the colonoscopy to a nurse putting my underwear back on. Horrified, I asked her what she was doing, and she patted my leg (yes, really), and said in a conspiratory whisper, “It’s ok dear, I do this all the time.” I very much wanted to tell her that I fucking didn’t, but in all honesty, I was stunned into silence. By golly gosh though, that was just the beginning.

Soon after, I was called to the radiology centre, to have a rectal MRI. I arrived cheerfully enough, thinking these machines can see anything they want to, from the outside, right? Well, as it turns out, the bowel is quite hard to see on an MRI, which meant that I was led into a room by a nurse who asked me, to my utter mortification, “do you know what KY Jelly is?” whilst waiving a large tube around menacingly. As we were talking about a rectal MRI, I was absolutely certain that I didn’t like the way this conversation was headed, but I took a deep breath and said “I have, but I am pretty sure that I have never used it in the context that you are about to tell me about.”

I used to think that the words ‘panties’ and ‘moist’ were the two worst words in the English language, with both being an evocative assault to the eyes, ears and mind. These days, I can add three more words to that list. Meet my new friends ‘rectum’, ‘mucus’ and ‘discharge’ – most special when used together in a sentence, put to you by a young and charming consultant with movie star good looks. Seriously, bowel cancer would be so much less embarrassing if the doctors were ugly and old.

Proposed screening test for doctors wanting to specialise in arse-related cancers:

dr doug ross


old doctor

A few months after diagnosis, I was admitted to hospital with a bowel obstruction. After a CT scan, the last test I had to have to confirm I needed emergency surgery (to insert a hole in my stomach that I could take a shit out of), was a little number called a barium enema. I now know that the other most feared words in the world, when used in a sentence are “lie on your side, and raise your knees up towards your chest.” It doesn’t take much imagination to work out that if your bowel is completely blocked, anything of this nature is going to be roughly comparable to having a coke can (or indeed the beverage of your choice), shoved up your arse and then pulled out again. After that, being rushed into surgery, and thereafter having my bum reside rent free in my body as a completely useless organ was nothing but a kindness.

They say what doesn’t kill you makes you stronger, and at one stage, it felt like the humiliation could kill me way before the disease got a chance to take hold. I could not cope any other way, unless I met it head on with humour, and it helps me cope with the constant invasion of an area, which to my mind was only ever designed to be an exit point. I’ve had to come to terms with a body that I worry is no longer attractive to my partner, due to the “alterations” that have been made, hopefully temporarily, to the plumbing. Coming to terms with this is very much a work in progress, but luckily I have a husband who loves me for me, and has also been able to see the funny side on several occasions when the old adage “if you didn’t laugh, you’d cry” is about to be played out. This very much the reality of cancer treatment, a constant mind fuck, and quite frankly, a body fuck, just not in the areas you would usually expect.

Julie and Jules: So now we’ve got you laughing and cringing simultaneously (it’s a special talent brought on by chemo-therapy – Spiderman-like superpowers or even x-ray vision – hello Dr Handsome – would probably have been more useful, but you make the best of what you’ve got) we would like to deliver a serious health message.

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Yes, a colonoscopy is embarrassing, but all the things detailed above … well they don’t bear thinking about, do they? The symptoms of bowel cancer are listed on the Bowel Cancer Australia website. Please if you have any of these symptoms, see your doctor straight away.

Mammograms involve getting your tits out and having them squashed between two metal plates – that’s nobody’s idea of a good time, but  neither is having your breast cut off followed by 8 months of chemotherapy and radiation. If you are over 40, touch yourself regularly, have a mammogram every two years and see your doctor immediately if you notice anything unusual.

The Actual Boob in the Actual Box

The name of this blog came about because a) I was looking for something catchy and memorable, b) because it is symbolic encapsulation of my experiences, and c) because I’ve always admired alliteration.

But behind the title there is actually a boob and it’s actually kept in a box:

If only the real one was still this pert.

If only the real one was still this pert.

It was made in Germany and cost $400, most of which was refunded by Medicare. That was pre-Federal Budget. If I need a replacement I’ll probably have to make it myself by filling party balloon with the contents of a tube of hair gel.

It’s hard to describe the excitement I felt the day I finally got my boob in a box. For six weeks post-mastectomy, I had to wear a fibre-filled cushiony thing like a little pillow. The surgical site is too tender and raw to handle anything firm against it, and is also too swollen to allow a boob in a box to be properly fitted, so the pillowy one is shoved in the bra to provide some semblance of normalcy. The problem is that the pillowy ones don’t look, feel or act like normal boobs, and because they are so lightweight they have a tendency to want to sit up around your collarbone, which makes you look like you have an unsightly goitre. I am a D-cup, so being without one of my breasts made me feel incredibly lop-sided and impaired my balance.

So when the day came that I was able to be fitted for my boob in a box, there was much rejoicing. I had an appointment at a speciality lingerie place, with a lady who is trained in fitting prosthetics, and she took her work very seriously indeed. She bore an uncanny resemblance to Pauline Hanson, which was a little unsettling at first and made me hyper-aware of avoiding the use of the word xenophobic or making any reference to fish and chips, but she knew her business and had warm hands.

Although she had a passion for politics, Pauline found her true calling in the world of prosthetic norks.

Although she had a passion for politics, Pauline found her true calling in the world of prosthetic norks.

Prosthetic boobs come in a range of sizes, and each size is weighted to feel like a normal breast. I was happy with the first silicone boob that was popped into my bra, mainly because it did not immediately start migrating towards my shoulder, but Pauline was not pleased with the result and made me turn this way and that, all whilst shaking her head and muttering that I was definitely a 9, not an 8 (boobs come in sizes like shoes). Once I had the 9 ensconced in my bra, well it was happy days! I kept looking at myself in the mirror, and laughing, as I couldn’t believe that it looked so real and even and normal. I could wear a t-shirt again! I could walk around the supermarket with both hands on the trolley instead of having to steer single-handedly whilst the other hand constantly readjusted my pillowy goitre. I could actually forget for a little while that I’d had a mastectomy. And that was the best feeling in the world.

I’ve had my prosthetic boob for 18 months now, and it has become very much a natural extension of my body. I am mostly unaware of it, until I have a shower at the end of the day and my boob gets put in its box for the night. Pretty much from the day after my mastectomy, people have asked me whether I’m going to have breast reconstruction surgery. Back then my answer was a big, fat, automatic NO as the thought of more surgery made me feel physically ill. These days my answer would still be no, but probably not as emphatic. The thought of voluntarily lining up for more medical procedures still fills me with dread, and my boob in a box is doing a great job.

But there are times when I wish I could wear v-neck tops or swimmers that don’t have a neckline reminiscent of the 1800s. It would also be wonderful to go braless (in private of course, even when I had two boobs they were not allowed out in public unrestrained) and not be constantly aware of what’s missing. One normal (44-year-old, size D, saggy) boob and a wide expanse of concave chest on the other side is not helped by even the fanciest of pyjamas, and without my boob in a box I am at risk of going around in circles like a rowboat with one oar. Maybe if I make it to my magic five-year ‘cure’ milestone, I’ll celebrate by getting a reconstruction. But it’s more likely that I’ll mark the milestone by dragging my boys on a trip through Europe or throwing a massive party, happy in the knowledge that whilst my boob might be in a box, I’m not.

The Wind Beneath My Wings

Yesterday, I did the Mother’s Day Classic Walk/Run in Brisbane. The event is held across Australia on Mother’s Day to raise money for breast cancer research. I am unfit and inherently lazy (gee, I wonder if those two things are linked?) but I was intent on doing my part to raise money for research, and also to prove to myself that one year on from treatment, I could do it.

Raising money for cancer research and support is something I committed myself to during my treatment. Every day that I sat having a combination of docetaxel, doxorubicin and cyclophosphamide infused into my body, I thought a lot about the science behind the cytotoxic cocktail that was hopefully going to save my life. The regime of chemo I had – called dose dense because it is infused every two weeks instead of the usual three – is used for patients whose tumour is large and has spread into the lymph nodes. Dose dense has been proven to significantly increase the chances of survival in people like me. The dose dense regime requires the use of an additional drug called pegfilgrastim to help boost the white blood cell count so that the chemo drugs can be given more frequently. Basically, without pegfilgrastim dose dense chemo would not be able to be used as a treatment because the patient would be at risk of serious or fatal infection. Pegfilgrastim was approved for use in 2002, ten years before my diagnosis. So, if I had been diagnosed 11 years earlier than I was, I would not have been able to have the treatment I did, and my chances of survival would have been greatly reduced.

I read an article the other day which said it takes an average of 17 years for evidence-based research findings to be put into clinical practice. So perhaps in 1985 or 1986, when I was watching Live Aid whilst admiring my new Swatch watch, or seeing Ferris Bueller’s Day off whilst sporting my asymmetrical ‘Flock of Seagulls’ haircut, researchers in the US started looking for solutions to the problem of chemotherapy causing the white blood cell count to drop to dangerous levels. In 2002, when I was single and carefree, spending my weekends drinking too many canned vodka premixes and watching Footballers Wives, the government gave the green light for pegfilgrastim to be used on patients undergoing dose dense chemo. Which meant that in 2012, when I was the married mother of a four-year old facing an earth-shattering diagnosis, I could have the treatment I needed. My efforts in raising or donating money for breast cancer research today is not likely to be of any personal benefit to me, but that is entirely the reason I do it. Those who raised funds in the 1980s didn’t see the benefit of their efforts, I did. And so it must go on.

Yesterday was a long way from the 1980s, and yet walking alongside me was someone I met in 1982.

Clearly depressed by the lounge suite and wallpaper situation, circa 1982.

Clearly depressed by the brown-ness of lounge suite and wallpaper situation, circa 1982.

Karin and I have been best friends since the first week of high school, and when I was watching Live Aid, she was there wearing her black Swatch watch (mine was white), and we saw Ferris Bueller at the cinema together (her spiral perm a lovely counterpoint to my own fabulous do). We have seen each other through boyfriends, weddings, births, miscarriages, divorces and all the rest of life’s dramas, a constant source of support, honesty, love and reality for each other for more than 32 years. The morning I received the phone call to tell me I had breast cancer (a call which was not meant to come through until late that afternoon), literally 30 seconds after I hung up the phone an SMS came through from Karin, which said ‘Have you heard anything yet?’.

Early on in my diagnosis, Karin told me baldly that it was simply not possible that I would die, because I was the keeper of our memories. She has a shocking memory for faces and names (and places and dates), and so has always relied on me to fill in the blanks. If I died, who would remind her about the time she got sent to the principal’s office for wearing orange juice bottle lids as goggles in art class? Or about our French teacher whose favoured winter ensemble was a natty turtle-neck jumper and neck-tie combination? Or just how amazing she is, as a friend, mother, partner, daughter and teacher?

One of us still has amazing legs, and one of us is wearing tracksuit pants.

These days, one of us still has amazing legs, and one of us is wearing tracksuit pants.

The 1980s were so good to me in so many ways – I got a lifelong friend, an understanding of just how unflattering asymmetrical haircuts can be, and a drug that so far has saved my life. The 1980s also gave us the movie Beaches and the theme song made famous by Bette Midler. Best friends have many in-jokes, and this is one of them. For you, Karin:


Brave and Inspirational

My friend started chemo this week. Even though I’ve been through it myself, it was hard to know what to say to her. But I knew what not to say. I did not tell her she is brave or inspirational. Because frankly, she is neither.  I know she will read this post and I know she won’t be the slightest bit offended by it, because people with who have cancer talk to each other with a level of frankness and honesty that I have never experienced in any other context.

I have the good fortune of belonging to a very small online group of young(ish) women with cancer. We talk to each other about our fears, our symptoms, our treatments and our prognoses. We swear (a lot, and with aplomb) about all of these things, and we support each other with the kind of raw love that only exists between people with horrible shared experiences. We’ve never met in person, but we have the most intimate insights into each others’ lives. We make the most hilarious jokes about colostomy bags and missing boobs, the kind of gallows humour that enables humans to process what may otherwise break us down.

Recently, I was lying in bed late one evening laughing hysterically whilst reading one friend’s story about how, by the time her cancer was diagnosed, she had not done a poo for two weeks. The super strength drugs she was given to get things moving along proved a little too effective, so much so that it was a long time before she again felt able to ‘fart with confidence’. In researching (ie googling aimlessly) whilst formulating this post I actually discovered that there is a company called Shreddies selling underpants with built-in fart filters. The company motto is ‘Fart with Confidence’.

Each pair of undies comes with a free gift card!

Each pair of undies comes with a free gift card, because nothing says thoughtful present than a pair of fart-filtering underpants.

Pretty much as soon as word gets out that you have been diagnosed with cancer, people start telling you that you’re brave. I have to have a mastectomy tomorrow … OMG you’re so brave. My hair all fell out so I ordered some scarves online … wow you’re just so brave. I feel like shit but my son has his first day of school … you’re the bravest person I’ve ever met. NO. No I’m not. It might make you feel better to see a person with cancer as brave because people only get dealt the cards they have the strength to deal with, right? Wrong. When I was in the midst of diagnosis and surgery and treatment,  I was frightened, absolutely fucking terrified, and on many occasions mentally and physically incapacitated by my fear. I wasn’t being brave by doing all the things I did – I was just trying to stay alive. True bravery is doing something in a selfless fashion without any benefit for yourself. The soldiers who landed at Gallipoli were brave. Members of the rural fire brigade who drive into massive fire zones to try to save the lives and property of people they don’t know are brave. Having treatment for cancer is one of the most self-interested things you can do, and does not involve bravery of any kind. It is all about survival.

The other thing that the cancer clique (so named because we are exactly like the popular girls were at school, but with added cancer) has discussed is how much we dislike being told, by people who don’t have cancer, that we are inspirational. What exactly is someone who has cancer inspiring others to do? Not get cancer? Because I think that is pretty much the only take home message that other people could have gotten from my experience. I didn’t choose cancer, it didn’t make me a better person and I hate the way it now influences (sometimes subtly, sometimes more obviously) pretty much every aspect of my life. For someone going through cancer, to feel that somehow your suffering is something to be drawn on by people who are not ill to give them the momentum to improve their life is not comforting or heart-warming or flattering. It actually becomes a burden, where the cancer patient feels like they need to be positive and upbeat during a time when just getting out of bed in the morning requires every ounce of inner resolve they have.

So if you’re not supposed to tell a cancer patient they are brave and inspirational, what are you supposed to say to them? Well, firstly, start with asking them how they are, rather than telling them what they are. And when you ask, make sure you are really willing to listen, and maybe then ask a question or two or offer some practical assistance. Maybe a little role play might help here. You be the person who doesn’t have cancer, and I’ll be the one who does. No, really, I think I should be the cancer person because I’m the De Niro of the pretend conversation on a blog acting world. Anyway, firstly we’ll do the what not to say version:

You: Julie, you look so great, I cannot believe you have cancer. You are so brave going out in public in that scarf, I just couldn’t do it!

Me: Oh …. um … thanks. Yep, I am just fine. [I say, as I assume my metaphorical foetal position.]

You: The way you are going on with life as if everything’s normal, well you’re a complete inspiration. We’ll have to catch up for a coffee. Bye!

Me: Thanks so much, that sounds great. [Walks through supermarket like zombie unable to remember what I came for and wondering if I’ll be able to make it back to the car without having to stop for a rest.]

And now we’ll do it the way that doesn’t make the cancer patient feel like they’re letting everyone down by actually being ill:

You: Julie, how are you?

Me: Oh I’m ok.

You: Really? What you’re going through must be tough, how are things going?

Me: Things are tough, I am really tired and the treatment makes me feel dreadful.

You: I am so sorry to hear that. I really would like to offer you some practical help. If you’d like I will come around on the weekend and take your kids out for the day, how about we say 8am on Saturday?

Me: If we really were friends you’d know I only have one kid, but I’m going to let that slide because this is only a role play.

I have hesitated to write this post for a while, worrying that it might come across as mean-spirited or ungrateful. But then I thought about all the poor, poor souls who will today be told they have cancer, and those who will be told tomorrow, and those the day after … and I realised that I needed to publish this post for them. I don’t want you to feel bad if in the past you’ve told someone with cancer that they were brave or inspirational, as let’s face it they probably have chemo brain and will be flat-out remembering how they have their coffee.

I’d like to dedicate this post to the cancer clique – Emily, who will be getting a pair of matching his and hers Shreddies for her wedding this weekend; Elizabeth who muffles her colostomy farts with a stubby holder, Anne whose son wants a pirate themed birthday party to make the most of mum getting around in a jaunty headscarf, Charlotte who feels bad because her hair hasn’t fallen out, Maria who posted the most hilariously unintelligible gibberish on Facebook when she was off her tree on pain medication, and George who is really struggling right now. Not a single one of you is either brave or inspirational. Unlike this lovely cross-stitch:



To My Boy, on His Birthday

Hugh, today you are 6. Your Dad – you still call him Diddy like you have since you first started to talk and we often wonder when you will drop this adorable nickname – chose your presents this year, and you loved them.  You got a Nerf gun and whole bunch of Star Wars Lego, with tiny figurines that you will use in the many, complex battle scenes that you set up all around the house. Lost bits of Lego will eventually be found with the soles of my or your Dad’s bare feet (often first thing in the morning, when the feet are particularly tender). There will be much swearing and then resolutions that absolutely no more Lego will be purchased by anyone in this house, ever again. Until Christmas rolls around and you earnestly tell Santa that if you had a Mandaolorian Speeder with Anakin Skywalker figurine, you would be the luckiest boy in the world.

You often talk about how lucky you are, but I wanted to tell you how lucky your Dad and I feel, every single day, to have you. It took us a long time and much heartache to get you, but when we first saw you as a tiny cluster of cells, and heard your heart beating, our lives changed forever.

5 weeks, 6 days gestation

5 weeks, 6 days gestation

I loved being pregnant with you, although it was also scary because I worried a lot that something might go wrong. Things had gone very wrong for me before, so the fear was real. But they say that some women blossom during pregnancy, and my obstetrician definitely thought that about me. At my 30 week check-up appointment, he walked into the room, stopped in his tracks and said ‘Look at you!! You look absolutely amazing, you are just glowing’. He was so excited about how well I looked that he proceeded to call in the nurse to come in marvel at my heavily pregnant self. Having you inside me might have made me need to go to the toilet approximately every 35 seconds, but it also made me shine from the inside out.

You were born on a Friday. You had to be birthed by caesarean because you were in breech position, so the doctor pulled you out by the legs, like a calf. You were also a similar size to a calf – 4.4kgs of chubby baby which made you look a lot like the Michelin Man:

That's you on the left.

That’s you on the left.

I remember that first day with you like it was yesterday. I had you in my arms rocking you to sleep, as the sun was just appearing over the horizon. Looking down at your beautiful face, I felt almost like I too had just been born. As I stared at you, all of the hurts and misfortunes and losses that had happened before you came into my life slipped away. My heart felt bigger and also fuller. You rejuvenated my heart and then you filled it all up, right to the very brim. And you have continued to do that every single day.

You were a delightful baby, who started sleeping through the night (which is the yardstick of every parent in the entire universe) at five weeks old. You didn’t much go for sleeping during the day, which sometimes made us both very cranky. But as you grew, your infectious smile and extroverted personality started shining through.


Five months old

You started talking very early. Your first Christmas, when you were not quite eight months old, your Aunty Viv noticed that you were starting to say Matthew, your cousin’s name. At that stage you also started saying Mum, Dad and cat. Soon you were talking a mile a minute, and since then pretty much the only time you’ve stopped talking is when you’ve been sleeping. And sometimes you talk in your sleep.  It took you aaaaaages to start to walk – you were nearly two when you finally did it! I dropped you off at daycare as a crawler, and when I went to pick you up that afternoon you walked across the room to me like you’d been doing it for years. We had tried everything to get you up on your feet, but in the end you did it precisely how you wanted to, when you decided the time was right. At age 6, you are still exactly the same.

As a toddler you were obsessed with Thomas the Tank Engine, so much so that ‘they’re two, they’re four, they’re six, they’re eight …’ became the theme song to our lives for about two years. I have put all your Thomas things into a box so that maybe one day you can share them with your own child. I hope I’ll still be able remember the lyrics by then.

red and green and brown and blue ....

red and green and brown and blue ….

You started school in 2013, when you were still only 4 years old.  When I asked your kindy teacher if maybe you should have another year there and start school when you were 5, the look of horror on her face said it all. You were more than ready for your next challenge (and her ears were probably ready for a break.) You were so little and so adorable in your uniform, and so bloody excited to be finally going to school! Your Dad and I both took you on your first day, and you bounced into that classroom, not a familiar face in sight, with complete confidence. I was prepared for you to be sad and scared, but you were neither, so we both remained dry-eyed that day.

As wonderful as the morning was, when I left you at school it was to go to the hospital and have my third round of chemotherapy. Dad and I did the best we could to shield you from the shock and fear that cancer brings. You and I talked often about why my boob had to be cut off and why my hair had fallen out, and you asked me one night if my boob would grow back like my hair – I laughed and laughed, but you were quite indignant because logically, it made sense. When I finally finished treatment (on your 5th birthday, so one year ago today) you quickly stopped talking about my illness and it seems now to be a distant memory for you. I really hope so. One of the things that made me so angry about my diagnosis was that it was the impact that it might have on you, but fortunately you are resilient (as children tend to be) and you have continued to bounce along through life with your characteristic verve.

This was taken at our beach holiday whilst I was in the middle of chemo. It made me so happy to see you so full of joy.

This was taken at our beach holiday whilst I was in the middle of chemo. It made me so happy to see you so full of joy.

Today, at 6, you are a very bright child, inquisitive and interested in what’s going on around you. You make friends easily, and love socialising. You also enjoy travelling and holidays, and especially camping. You love eating out at cafes and restaurants, although your taste in food is still fairly limited – chicken nuggets please – but you also feed off the buzz of being out and about. You are easy-going, love animals and babies, and are amazingly skilled at computer games. You are learning the piano, and have swimming and tennis lessons. Your sense of humour is starting to shine through, although to be frank we could really do without the incessant knock-knock jokes.

As well as being a talker, you love reading. You learned to read very quickly, and since then have taken to it like a duck to water. It really is pretty amazing, and makes me so proud. Reading and writing have always been my creative outlet, and I am starting to think that you might have inherited this. I hope so – I have so many amazing books that I want to share with you.

What I admire most about you Hugh is your seemingly boundless ability to give and receive love. You are so full of love for your Dad and I, your grandparents (especially Grandma, you and she have always had a special bond), your aunts, uncles and cousins, your friends and your pets. You are accepting of difference – in fact you mostly don’t even notice it – and when you meet someone new, your instant reaction is to like them and want to be friends with them.  You enjoy nothing more than being surrounded by the people who mean the most to you. One of your favourite things to do is huggle (your word for a combination hug and cuddle) on the couch with me on one side and your Dad on the other. This is also one of my favourite things to do, just the three of us in our own little world.

You and I share a special bond, and can communicate with just a look. When we are out and about I will often find your hand linking with mine –  I am always amazed by how our hands just find each other without any conscious effort. We sometimes butt heads, because to be honest six year old boys can ocassionally be hard work, but every night as we lie next to each other in your bed while we read stories, the days problems seem very far away.

Not talking. Sleeping. Might talk later whilst sleeping.

Not talking. Sleeping. Might talk later whilst sleeping.

You mean the absolute world to me, my baby, and there is nothing I would not do for you. The challenges I faced in conceiving you and keeping you, and then more recently in keeping myself alive, have shown me with great clarity that the future is not a guarantee. But what you can be sure of is that, whether we are together or apart, you will always, always be in my heart, filling it up to the very brim.

My Sunshine

My Sunshine

I started singing this song to you when you were in the womb, and I still sing it to you most nights at bedtime. It’s an old song, but it’s like the words were written about you and me. I love you Hughie. Happy Birthday my baby.

Michelin Man image was sourced from here.