April 28, 2014

What it means when I call you family

Call it a strength or a weakness, but because of its very nature, this blog is inconsistent.

It is here so that I may record what the world looks like through my cancer lens. In the first year, pretty much everything I saw, felt and did had cancer at its core. In the second year, I slowly edged back towards a fragile sort of normality. And now at the start of my third year since my diagnosis, I can honestly say that I have gone whole weeks without feeling like I’m viewing the world through the eyes of someone who had, or still has, cancer.

I say this as a means for accounting for my long silence. It’s been a happy, busy, eventful silence. I think in this blog’s case, the silences are the periods I should be aiming for.

Right now, the thing that keeps me coming back here is my breasts. Or lack thereof, really.

When we last spoke, my surgeon had dropped the bombshell that he didn’t think that much could be done to rebuild my breasts. What was left was just bone and scar tissue. And we were trying to treat it with injections of fat to build it up and reconnect it to my blood supply as best we could, but we thought my skin was stretched too thin to allow real breasts to become a possibility.

Because I remain a staunch believer that everything is a process and that nothing is finite, I kept on going with the fat grafting.

Along the way, I had a nasty incident where my body rejected that grafted fat and I wound up on a new surgeon’s operating table just before Christmas. It sounds bad, but it was good really, because Dr Hyphenated (my name for him, not his) looked upon me with fresh eyes and told me not to give up. He is my “second opinion guy” and long may he remain so. He is a very good man.

And then in January something nice happened. The fat settled and my flesh turned from thin pale purplish grey to soft warm pink and my first surgeon Dr M looked again and said maybe we can slip a small implant in and that takes us up to pretty much now.

We’ve done it and they’re in – two smallish implants that are so far looking grand. They are much the same size as my breasts were to begin with, although more gravity-defying of course.

I am sending all the love that I can muster their way. Telling my body to nourish and accept them. It will be another two or three months before I can give a sigh of relief and say girls, you’ve survived so for the meantime I’m just trying to be good.

Take my antibiotics. Wear my hideous oversized compression bra. Don’t lift heavy things. Send love.

The last one is my own initiative, but I stand by it. Apparently if you think healing thoughts about a body part, you actually send more blood supply in that direction. Someone’s scientifically shown that. So that’s good enough for me.

Which takes me to today’s metaphor. It’s about sending love.

I know a whole lot of you have been waiting for the big wedding post. March 15 was the day. And it was pretty much perfect.

Coming up to the wedding I kept wondering what I should say. And I kept coming back to the same thought. That there are really only two times in life that all the people you love most are around you.

The other one? It’s your funeral.

In the end I couldn’t say much, I was too overwhelmed. But basically what I said and meant was that every single person who attended our wedding was now family.

I felt like, just as I am now concentrating all my love on two teardrop-shaped lumps of silicon resting under my pectoral muscle in my chest, for one beautiful evening the love of 120 people was concentrated on Charlie and I.

It was the best therapy and treatment I could ever have.

I love you all more than words can ever describe.

These incredibly gorgeous photos were taken by the extremely talented Brent Winstone who attended as a guest and could not have captured these candid and emotional moments more perfectly.

October 23, 2013

Storm in an A Cup

It’s been so long since I wrote that people have been asking me if I’m all done.

Erm, no.

I’ve been telling people that my silence has been caused by the perfect storm of work, surgeries every 5-6 weeks, and trying to arrange a renovation and a wedding at the same time.

But the truth? The reconstruction process has actually been a bit heartbreaking. And I actually didn’t feel like blogging about it.

I’m now in for round three of the fat grafting process. Round three? I told myself there wouldn’t be a round three. But then, I also told myself that I’d have great (fake) breasts at the end of it.

There have been a lot of lies floating around.

After round two, I went to see my surgeon. The plan: to say right, Sir. We are done with fat grafting. Give me my implants pronto because I want nice breasts for the wedding next March.

And his response. Sort of squirmy. Awkward.

Something along the lines of your scarring is worse than we thought. Your chest wall skin is stretched too thin to accommodate breast implants. But the good news? The “experimental” fat grafting seems to be going well and we’re confident that you can get a good A cup out of it.

Fricking A cup? A CUP???

I’ve been through this many surgeries and this much treatment and this much bullsh*t and you’re offering me an A CUP?

It was all I could do not to collapse in a blubbering heap on the surgeon’s floor.

I know I should feel lucky just to be here at all, but bloody hell, I promised myself breasts. Good breasts.

The little girl inside of me had her red balloon, her teddy bear and her lollipop wrenched off her all at once. My bottom lip quivered for two days.

An A CUP!!!

But then I did what I always do, and rationalised. And compromised. And I bought myself my first ever WonderBra (A cup!) so that maybe, just maybe after round 3 I could take my crappo little A cups and squeeze them into some pubescent notion of cleavage?

So far, by the way, I’m not filling the A cup. I’m aspiring to the A cup.

And my fake foam breasts still fool everyone into thinking everything’s OK. And now they are the carriers of false hope. When I wear them it’s like they’re mocking me. They’re saying like them? These are the fake breasts you can only dream of!

Bitches.

And then you know what else has been happening? Pink Fricking October. Pinktober. Shudder.

I’m here to tell you that the breast cancer community (or at least the ones I know) don’t bloody like Pinktober.

It’s not that we’re not pro fundraising or awareness. No, no. What pisses us off is that Pinktober is the month of platitudes. Where big corporates donate peanuts to a charity, turn a product pink, some idiot buys the product and everyone feels like they’re somehow saving the world. (I can see my advertising brethren backing away from me right now saying that’s our clients you’re panning. Keep your voice down, angry lady. Sorry, but it’s true. You’re helping the economy, yes. But curing breast cancer? Doubtful).

Or, worse. Some idiot decides to create some Facebook meme where women write something cryptic on their wall… Like where they put their handbag… And it’s meant to be some “all us chicks are in this together and those silly boys just don’t get it”… And I guess maybe they think some donation fairy somewhere flicks a few bucks into a research charity? Maybe?

GAAAAHHH!!! There is no donation fairy!!!

Sorry. Control the righteous indignation. Control it.

But guess what? There’s an even dumber event on the calendar. Ladies, meet No Bra Day.

Yep, you guessed it. You can forego the bra in celebration of your fabulous titties and again, that magical donation fairy will flap her shiny wings and breast cancer is cured!!!

Slow clap.

So I’m here to tell you, oh pack of loose titted geniuses, that your no-titted post mastectomy brethren are plotting to hurt you.

Get a clue, brainiacs. Flapping your perfect love bags in our faces is not making us feel loved, or supported. It’s just rubbing in our faces what we don’t even have.

Wow, I feel so much better. This blog is way cheaper than therapy!

So, yeah, that’s where I’m at. I’m sitting in a day surgery waiting room during Pinktober dreaming of my new A cups. Someone will knock me out cold any minute now (and charge me $800 for the privilege) and maybe, just maybe, I might look a little less like a ten year old boy when I wake.

Wish me luck. And boobs.

P.S. Why the photo? These are a few of my favourite things right now. A mighty fine little skull-shaped bottle of tequila and a little Day of the Dead bride and groom, lovingly bought for me by the wonderful Mark and Kara in Santa Fe. I thought they might cut through the grumpiness of this post a little!

July 19, 2013

Black and blue

I’ve always liked a bruise. They are the daytime soap opera drama queens of the injury family.

All flamboyant colours, spectacular visual representations of pain but very little actual substance. The kind of injuries you can proudly show off to a friend without them gagging in disgust, and boast of the “dangerous” situation by which you acquired it, all while sipping a latte and reading the paper.

Well, my friends, this bruise is not one of those bruises. And this is a G-rated photo of said bruise. If you want the full bruise experience, you need to ask me sweetly to show you a picture of my swollen naked arse and bloated purple thigh (or you could forego the photo and ask to see the real thing, I’m usually happy to oblige). And yes, I am wearing bike pants. Doctor’s orders. Ho ho ho.

OK, Niccola, what gives? Aren’t your medical mishaps normally in the breast department?

Why yes, kind reader, they are! Let me get you up to speed, because you haven’t heard from me for a while. These last three months have been a sequence of blues, and blacks, and purples and yellows. Firstly in the stomach department, courtesy of an injection called Zoladex. Zoladex is a friendly little syringe roughly the size of an elephant gun who gets hammered in to my gut monthly and leaves me in a permanent state of menopause with a bruise that looks like I’ve been assaulted with a rock melon. Nice guy, huh? Bastard.

I thought Zoladex was the baddie in my life, but that was before I experienced liposuction. Liposuction? I know, what is this, an episode of Real Housewives of …? Actually, I like to call it Real Housewives of BC.

Yes, liposuction. The first stage of my breast reconstruction involves what the surgeons delicately label “scar revision”. A so-called “minor procedure” that involves sucking the fat out of my thigh and injecting it in to the cavities formerly occupied by my breasts. “Minor procedure” my swollen purple arse!!!

My breasts are actually faring the best throughout all of this. They are sitting peacefully on my chest with minor, quite subdued bruising, neither concave or convex, not causing anyone any problems.

But my left thigh has swollen to twice its normal size and turned a deep, royal purple. And this is not one of these latte-sipping drama queen bruises. This is a hugely painful affair that means I groan every time I stand or sit (on one buttock only) and hobble around the house in my two pairs of bike shorts.

Minor procedure??? I’d hate to experience what a major procedure is like if this is considered minor. This hurts worse than the bilateral mastectomy. Cellulitis aka The Elephant still wins the pain game but this comes a close second.

Ladies, think twice before you nip down to your local hospital to get a bit of fat sucked out of your thighs. I like my fat. I miss my fat. Cosmetic surgery is so barbaric. I can’t imagine how or why people would elect to go down this path. It’a messed up world where people are starving on one continent while adults are getting their fat sucked out on another… Go to the gym if you don’t like your fat! Or love yourself the way you are! Grump grump grump. My butt hurts.

What else can I tell you? My beautiful puppy has also been under the knife, and has had a terrible surgical run of it as well. Like dog like owner. Bizarre.

She also has a messy looking thigh.

We’re a good pair, hobbling around the house together. But the important thing is, she’s home, as am I. We might look a bit messy but we’re A-OK and happy to have each other.

The best thing about bruises is that they come and go. In a week or two they’re a distant memory. They’re not like scars, things that stay with you, a haunting reminder of what’s been. In another few days, I’ll shed my daggy bike pants and return to the real world as though nothing bad ever befell me. And hopefully this bruise leaves a good legacy, a formerly scarred pair of breasts that are ever so slightly closer to being new again.

May 19, 2013

Angelina is a brave woman

Is it old news to do a post responding to Angelina’s brave announcement last week?

You can imagine how many people have asked me my thoughts on this. I appreciate your interest, and I think it’s great how much dialogue Angelina’s words have sparked. I could have done without the narrow-minded, withering and smarmy responses to Angelina’s announcement that popped up periodically on Facebook, but then, the haters will always hate, won’t they?

So what do I think?

That Angelina is a brave and strong woman, and that she deserves our respect. Bringing this complicated subject in to the public eye can only be a good thing.

But…

(There’s always a but…).

What worries me, coming at this from the less fortunate side of the bilateral mastectomy debate, is that a good news story like this can over-simplify the subject matter a little.

Just in case you’ve only recently started reading my blog, a quick refresher on my experiences thus far.

Last June, after a woefully slow diagnosis process, I was found to have an invasive ductal carcinoma underneath my right nipple. It was roughly the size of a twenty-cent coin (that’s a bit bigger than a quarter, my USA friends…). At my doctor’s advice, I underwent genetic testing, and found that I carried the BRCA2 gene mutation.

After some consideration, I decided to undergo a bilateral mastectomy – prophylactic on my left, removing the cancer on my right. I had no choice but to lose my nipples – one was already affected by the cancer, and from my perspective, any remaining breast tissue wasn’t worth the risk. I didn’t have enough spare tissue (eg a tubby tummy) for a natural tissue reconstruction, so I had the first stage of my breast reconstruction along with my initial surgery, just as Angelina did.

In the weeks following the surgery, I was really quite happy with the aesthetic result. Sure, I didn’t have nipples, but I did have rapidly expanding breasts, which was good fun. They were also gravity defying. Bonus.

Unfortunately, there were also tiny amounts of cancer found in my right lymph node. This meant that I had to start chemo before my final reconstructive surgery (the point where the expanders are replaced by silicon implants). I was assured that it was fine to keep the expanders in for the six months or so of chemo.

Sadly, it was not the case. My left breast developed a bad infection. It took months before it was correctly diagnosed as cellulitis (the bug responsible was called Pseudomonis) and by that point, the infection had also spread across my chest wall to my right breast. I was in terrible pain, and it took three additional surgeries, three week-long hospital stays, and five weeks of IV antibiotics (and the end of chemo) before the infection was finally banished.

The day they removed my left implant was absolutely heart-breaking. Ditto the day they removed my right implant. For months following I couldn’t look at my naked body in the mirror. I couldn’t bear to see the long ragged scars, the loose flab where my beautiful breasts used to be.

It’s still really hard. While I’ve now grown accustomed to my breast-less torso, at certain moments I’m suddenly abruptly reminded of how different I am from other women. I’m too scared to get a massage or a spa treatment because I don’t want to have to explain why I have no breasts. At the gym and the swimming pool, I now get changed in a toilet cubicle because I don’t want myself or anyone else feeling uncomfortable or awkward. For months I even tried hiding my scars from my own partner. It’s still many months before I can start again and embark on two more major surgeries to hopefully get my breasts back.

But what does this have to do with Angelina?

What she’s proposing avoids most of this nastiness. By having the bilateral mastectomy preventatively, you can usually keep the nipples. They go a good way towards hiding the nasty scars. And being healthy throughout the reconstruction (rather than immune suppressed while undergoing chemo) means that the chance of infection is very small.

However.

Here’s the interesting part. When I was debating the bilateral mastectomy, I was debating it on largely aesthetic grounds. It’s human nature to view it that way. But the thing is that having a bilateral mastectomy has a much, much deeper impact than purely aesthetic.

Let’s not beat around the bush here. Mastectomy is a pretty word for what is actually an amputation. Along with the breast tissue that is scraped out from the chest area go the nerves as well.

Over the months, the nerve endings try to repair themselves. A lack of sensation turns to strange dull pins-and-needles. Sometimes it feels like two phantom breasts are hanging off my chest. The lack of sensation extends right around to the start of my back, which feels quite painful to the touch.

It’s easy to say so what, you don’t need breasts. But actually, psychologically, I say you do. Without going into gory detail, breasts form an important part of a woman’s sexual physiology. It’s in this context that I miss them the most. I actually feel like less of a woman without them.

Will having fake, reconstructed breasts help reduce this? Maybe. But it won’t bring the sensation back. Those new breasts will never be completely part of me.

Looking back on those difficult days leading up to my mastectomy, I wish that someone had told me to really feel how it was to have breasts, and to remember that feeling. But everyone was too busy telling me how great my new breasts would look.

Right now, with my ravaged flat chest, do I most want the appearance of my breasts to return? No. I want the sensation to return. I want my chest to feel like it belongs to me again. I would be interested to know whether in six months time, Angelina feels the same way.

I’m not saying bilateral mastectomies are a bad thing. They’re a life saver. And I commend any woman with the strength to go through with it, particularly prophylactically.

But I just want the dialogue to go deeper than it was three months of discomfort but then I popped out the other end with great breasts – the end.

It’s just not that simple.

And we’re doing women a disservice if we make it out to be that simple.

This is my honest opinion. Please respect it for what it is – an opinion. I don’t know if my experience is typical, good, bad, middling, but it’s worth sharing. I hope it may prove of assistance to someone making what is possibly the hardest decision of a lifetime.

All my love, as always.

Postscript: As per always, Scorchy has posted some incredibly insightful comments on this topic. Definitely worth a read.

May 11, 2013

Or did I make you f*ing dance?

A few months ago, I heard a track on the radio. I have to warn you, it contains expletives. But then, a lot of good things do. It’s by Robert DeLong, and it’s called Global Concepts. Here’s how it starts:

I think it burns my sense of truth
to hear me shouting at my youth
I need a way to sort it out.

After I die, I’ll re-awake,
redefine what was at stake
from the hindsight of a god.

I’ll see the people that I use,
see the substance I abuse,
the ugly places that I lived.

Did I make money? Was I proud?
Did I play my songs too loud?
Did I leave my life to chance
or did I make you f***ing dance?

So, where have I been these past five weeks? I’ve been dancing, people. And I intend to make the entire f*ing world dance along with me.

Sorry. Expletives. They’re contagious.

But anyway, what is the crazy lady talking about? Where were we?

The last time we spoke, I was sitting by a pool in Malaysia. Since then, I’ve shivered my way around Copenhagen, driven really fast around Northern Italy, and returned home to lovely sunny Sydney, just as the trees were beginning to shed their leaves.

And the whole way through our whirlwind adventure, I had this song on my head.

Did I leave my life to chance
or did I make you f***ing dance?

…

Did I leave my life to chance
or did I make you f***ing dance?

…

Did I leave my life to chance
or did I make you f***ing dance?

You get the idea.

What does it mean? It means that since I’ve had the potential of an early death flashed in front of me, I’ve been suffused with the desire to take life by the balls.

Sorry. Language again.

I realised that there have been many, many times in life, too countless to mention, where I’ve made the sensible decision. Where I’ve said well, that’d be fun… but it’s not strictly necessary now, is it?

And in Italy, in Lake Como in fact, I suddenly realised that this has to stop.

I’m not a woman of faith. I’m really not convinced there’s any life after this one. And as such it would be a bloody shame to miss out on any opportunity for enjoyment.

The upshot being, I decided, among other impulsive decisions, that I wanted to get married.

Those of you who have known me for a long time will know that I have always proudly been not the marrying type. Not being religious, it’s simply not necessary (see above). And I’ve always liked questioning social norms and expectations. And plus, I didn’t (and don’t) want to be a party to some archaic institution that discriminates against human beings who love just as truly, deeply and honestly as I do. If gays and lesbians aren’t allowed to marry under Australian law, why should I be?

So, why the change of heart then?

A thousand reasons.

In the past year, my various families (nuclear, de facto and urban) have taught me just how important family is. Charlie’s family in particular were so incredibly supportive, loving and wholehearted through my treatment that I began to question my naive assumption that one family (my nuclear one) was enough. I’ve long called myself sister-in-sin to Charlie’s siblings but just plain old sister is nicer.

My emotional baggage about my parent’s marriage was also troubling me. I knew deep in my heart that part of my lack of desire to get married stemmed from my fear that if I married, my relationship might go the same way. I also feared bringing disparate parts of my divorced family back together and opening up old wounds.

Part of the healing process for me is confronting my own demons. Accepting that my I am not my parents, and that my family’s ancient histories are not my problem or responsibility is a big step, I believe.

The other thing that’s been troubling me has been certain people’s treatment of Charlie and myself. A subset of people have long treated our relationship as somehow less worthy or genuine because of our lack of desire to get married. I even had one person ask me if we were in a holding pattern until better prospects came along. I mean… seriously?

It’s not that I’m keen to impress these people. I think their attitude is pretty reprehensible, actually. But right now I feel I need to make a definitive statement. We’ve been through a lot this past year and all the deep connections that have been forged need to be celebrated.

And finally, I want to gather all my favourite people together in one room and f*ing dance.

Last expletive. Promise.

So, Europe.

It was absolutely wonderful.

There were sweets, and gloves, and lots of neon purchases in Copenhagen:

Lake Como was breathtaking. And life changing. And life affirming.

We stayed in a truly ridiculous spa that was once the home of a famous opera singer. We joked that we were staying in George Clooney’s boudoir.

Jazz hands in Como.

Milan, where I admitted over a 2 Euro glass of prosecco in this old Monastery that I wanted to get married.

We took in a tiny portion of the Salone (Milan Design Week).

Then…

Parma…

Siena…

San Gimignano…

Bergamo…

Verona…

And San Pellegrino Terme. Once a glamorous spa town, now an almost forgotten historical relic.

It was a beautiful trip, but the beautiful times didn’t end there.

It’s nice to be home.

April 6, 2013

The bucket list tour

Goodness. I hope you like photos.

Take this as a good sign. I’m a person who lives for pictures. When I’m sad or sick, my desire to record and create images just about vanishes. Which is why this blog was text only for so many months.

When I’m well, I start looking at things again. And planning and plotting things. So herewith, one almighty image dump.

Firstly, where am I?

I’m on a trip that I’ve dubbed “the bucket list tour”.

Last year, when I got my diagnosis in June and everything just sort of stopped, a rather lovely holiday fell by the wayside. Charlie and I were planning to head to Venice for the Architecture Biennale, and to Hawaii for a friend’s wedding. Surgery, and IVF, and chemo, and all other unpleasant things took precedence. Of course they did.

Rather than lovely holidays, I had months and months as a virtual prisoner in my own house or various hospital rooms. I believe I wrote a blog post at some point about skipping the country. It wasn’t the right time, but of course it was the starting point for plotting my next trip.

It’s a strange one. Don’t expect logic or order here, because it’s a “bucket list” trip. I connected the places I wanted to go and the people I wanted to see, and went for it.

Our journey starts in Cambodia. Two dear friends, Eva and Loris, are living the most remarkable life in Phnom Penh right now. However, they’re soon to pack up their wonderful apartment and move back to Australia. So we simply had to visit them before the time ran out.

In no particular order, here are some mementos of our time in Phnom Penh.

First up, lady boy feet in animal slippers at a regional food fair in Phnom Penh. This was a big night out Phnom Penh Style. There was a rather intense moment where I sipped snail porridge in front of an adoring crowd of regional Cambodians*. There were a whole lot of young fellows with amazing sweeping K-Pop coifs. We learned how to dance anti-clockwise around a fruit table half-Khmer half-Hip Hop style (that’s our dancing posse in the next photo down- note a couple of regional Cambodian fellows who took it upon themselves to teach the dorky white folk to dance). It was an awesome night.

*There may have been two rather explosive cases of food poisoning following the snail porridge experience. Or was it the deep fried crickets at the market the next day? Impossible to say for sure.

These rather lovely tiles are inside a once grand hotel which is now occupied by squatters and slowly crumbling away. Apparently the film City of Ghosts was shot partially in this building. I haven’t seen it as yet but if the building is anything to go by it’s pretty atmospheric.

Fishy delights at the Phnom Penh Central Market. Post food poisoning, the dried seafood display now looks to me like neatly laid out micro-organisms of the gut churning variety. At the time they just looked pretty.

Lovely, lovely mangosteens. The rest of the world deserves mangosteens.

Cambodia is a survivor of some really horrendous stuff. It feels incredibly crass to draw a parallel between my own recent experiences and Cambodia’s slow healing process post- Khmer Rouge, but the country really spoke to me in a way I don’t think it would have pre-cancer. The humility, dignity and quiet acknowledgment of terrible wrongs in the too recent past was inspiring if saddening. The people of Cambodia want us all to bear witness to the terrible wrongs, and so we travelled to the Killing Fields on the outskirts of Phnom Penh. The memorial stupa contains around 9000 skulls, most showing serious head wounds. The ground still holds slivers of bone and rags of torn clothing. What terrible wrongs are inflicted, human being on human being. Shall we ever learn to just live and let live?

In a rather alarming twist, a tourist guide sheet hanging in a Tuk Tuk offers “shopping and shooting”, “malls and machine guns”.

Another faded colonial gem. Squats with satellite dishes?

Next stop, Malaysia. We were here to attend the wedding of an old family friend, and to catch up with my brother who I hadn’t seen in several years. First, a motor bike wall mural inside a bunker in Fort Cornwallis in Penang.

Random kitsch in the old Fort.

Creepy china dolls and other oddities in the Peranakan Heritage Museum.

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Random vistas in Old Penang.

A short trip to Malacca, between bouts of food poisoning. The upside of the Snail Porridge Amoeba Incident was that I got to meet a wonderful Chinese doctor. He not only quickly prescribed a quick solution to the food poisoning, but he gave me a spontaneous character sketch (frighteningly accurate) based on my blood group, with diet suggestions with a view to managing my “chronic illness”. I stayed away from alternative medical advice during my treatment but I’m now open to suggestions and may try a little of what my new doctor friend recommended.

It’s now 24 hours until we leave South East Asia and I’m sitting by the poolside watching torrential tropical rain thunder down. I am truly content and so, so happy to be here writing this post in happier times.

Love to you all.

March 20, 2013

A rainbow for Lisa

Friends, I am writing this post with a big, fat lump in my throat and tears in my eyes.

Lisa Lynch passed away a few days ago and I am quite sure the entire breast cancer community shares my devastation. Which is, of course, nothing compared to those who knew Lisa personally. I know that for sure.

I’ve referenced Lisa on this blog before, but in a veiled tangential kind of a way. Yep, Lisa was my girl who I had such hopes for. The one who got breast cancer aged 28. The one I was looking to for guidance and reassurance, as I was trying to come to terms with being the girl with cancer. And when I read that she had incurable secondaries, I freaked out. Honestly, I’ve been in a semi media black-out ever since. However, as the months have passed, I’ve slowly opened my eyes, and my mind, to the possibility of incurable cancer.

Another incredible blogger, Scorchy, has helped me on my way with this. Scorchy, I should’ve told you months ago how much your blog has helped me. I always felt a bit shy to say so, because so far I’m one of the “lucky 80%” and I know you struggle with how the focus is on those with curable breast cancer and not the 20% who really deserve it. I didn’t feel quite worthy. And in truth, I’m also just shy. I’m a blurker. Sad but true.

And yet in a funny kind of a way, we’re in a very similar place right now. We had our initial diagnosis within a month or two of each other. We’re both back at work, and relishing the normality of it all. We’re both so, so grateful that our issues with pain are under control. We’re even on the same drug, Tamoxifen. Fun times. Scorchy never ceases to amaze and delight me with her honesty, her sarcasm and her seemingly unswayable determination. She is also a brilliant writer. She wrote a beautiful post about Lisa a few hours before mine, which I have no intention of trying to equal.

Lisa is… was… three years older than me. I can’t help but see that this could be my story. People say to me “It’s over now, right?” and I can’t even begin to articulate to them how far from the truth that is. Lisa was in my exact position after her initial treatment finished.

How is it that some people wind up as good statistics, and others as bad ones?

Don’t tell me it’s fate, or luck, or God, or science, or whatever. It just is, and it bloody sucks.

So what can you do? What can I do?

Draw strength from amazing women like Scorchy and Lisa. It sounds vampire-like, drawing strength from women with incurable breast cancer. But I do. You women are fricking incredible.

You help me believe that no matter what happens from here, you can stay strong and bright and honest and keep on loving life.

These are big concepts to come to terms with. I still can’t claim that I understand or accept the concept of death, at any point in time. But I understand the concept of living. I understand it so much more, post cancer. I’m not sure I would have reached this level of understanding any other way.

Lisa, I salute you, wherever you are.

All my love to all the brave, beautiful women out there. This one’s for you.

And the rainbow too.

February 20, 2013

Hair and now

So, as I keep alluding to, my fuzz is coming along great guns. It’s also being rapidly joined by eyelashes and eyebrows, to my great relief! It looks to my eyes like it’s growing in a sort of gunmetal grey colour, but I could be mistaken.

What amuses me about my fuzz is how people respond to it. In general, women claim to love it, men seldom acknowledge it, and then once in a while someone wants to pat it. This I understand completely – a fuzzy head is awfully nice to pat. I have befriended a number of (high camp) local gentleman who yell out Babe, love your hair! as I walk on by.

As to how I feel, I’m not quite sure. I’m ecstatic to have hair at all, but I can’t quite adapt to my face as it is now.

So, kitandkabooble brains trust, what do you think? Here are a series of photos – before, during and after chemo.

This photo was taken about a week into chemo by my very talented photographer friend Fi. I was miserable and nauseous, but I feel in retrospect the photo shows great strength. What long thick hair I had!

These two are photographic evidence of the wig and painted on eyebrows I wore to the very lovely Kylie and Ian’s wedding. Fun fact: that’s another wonderful friend named Fee in the photos. Love my Fionas. Thanks Kylie and the talented photographers for these photos!

And here I am now. Is the transformation as big to everyone else as it feels to me?

February 16, 2013

Staring at the sky

I’ve become one of those weird people who photographs the sky.

There’s little more annoying than someone who spontaneously stops in the middle of a busy street and photographs nothing, right?

I have, until recently, filed these people in the category of bad New Yorkers. Because there is nothing that screams tourist more than someone clogging the footpath and taking lame photos. Nothing. And no-one is less tolerant of a lame-o than a New Yorker.

But anyway.

I seem to look up more at the moment.

I keep getting struck by how amazing everything is. Sun is astounding. Rain is remarkable. Clouds are like nature’s emotions. And they’re all playing out right above our heads.

Find a metaphor in it if you’d like. For now I’m happy just photographing skies.

February 10, 2013

Lucky number 31

I never thought of myself as the type to deal in magical thinking. I was a realist. A rationalist. I dealt with things with the bare minimum of fuss, fantasy and fear. And then I got cancer.

I started off, true to form, brave and rational. I cheered myself I wasn’t scared of needles, or doctors. Truth: I was very scared of hospitals though. I didn’t have a nice history with hospitals. My hospital experiences were all tied up with death (my two grandmothers), near death (my mother’s horrific and extended experience with colitis) and fear of cancer-related death (my dad’s prostate cancer).

Now, nine months or so later, in that strange hinterland post treatment, I’ve had to finally admit that my superstitions run very deep indeed. And that there are fears where there were no fears before.

Two weeks ago, I wholeheartedly leapt back in to full-time work. And it was wonderful how everything slotted back in to place. It was pretty much, save for people’s polite queries regarding my shaved head, like cancer was a bad dream and that I’d now woken up.

Except it wasn’t a bad dream. Two days ago I returned to hospital to have my IV port removed. Oh yes, my trusty port. The port that gave me my chemo, litres of blood transfusions, five weeks of IV drugs. Was I happy to get it out? Hell, yes! Was I scared to get it out? Terrified!

Getting the port out meant saying to the world I’m done with this. Chemo is over. The cellulitis is defeated. I won’t need weekly blood tests. Treatment be gone! But new me, magical thinking me, quaked. Don’t tempt fate like that. Never say never!

Walking in to the hospital was difficult. For so many months the hospital was my turf. I felt safer there than anywhere else. I knew the secret passageways, recognised the nurses and enjoyed the changing notice boards and art displays. After just two weeks of work, the hospital felt foreign. Scary. A return to the nightmare.

And when I lay on the sliding metal X-ray tray with a pretty young radiologist saying It’ll only be three or four needles I felt faint. I hate needles. I didn’t use to, but I do now. Every needle stuck in to my chest reminds me of my first breast biopsy, and then the terrible sentinel node biopsy the day before my surgery. I so vividly remember that the last thing my breasts went through was searing pain. Isn’t that sad?

Anyway, the port came out, and so far so good. Rationality:1 Superstition:0.

Does it mean the magical thinking has passed? Not in the least. I couldn’t join a social network for people with breast cancer the other day because you had to say where your treatment was at, and all I could think was how horrible it would be if I found the cancer had spread and I had to update my status. Crazy lady, right?

I’m almost relieved that I have five years where I’m not permitted to have kids, or say it’s over, because it gives me an end date for superstition. December 24, 2017. That’s the date.

So what am I up to in the meantime? Well, I figure that if life is a game of Monopoly, I’m now out of jail and have just been dealt a Chance card. Sort of a Go directly to work, pay your mortgage, go on nice holidays, generally act like a complete yuppy and in five years you can roll the dice again Chance card. And that is A-OK with me.

Step 1 was turning 31. 30 was, to put it mildly, the lousiest year of my life. So my first act was to start 31 right. I booked a lovely house in Jervis Bay with my nearests and dearests and had four days of eating, drinking, walking on the beach (in the rain), swimming, and one very intense Pictionary game. 31 started with little pretension but much happiness, and I hope it’ll continue in the same spirit. Thanks so much to all the wonderful people who drove down over the weekend. You filled my superstitious soul to the brim with wonderful, positive, happy vibes and left little space for any cancer fears.

I hope you’re not too bored of puppy photos yet, because here are a few more from the weekend.

Lots of luck (and love) to you all.
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