Month: December 2013

Faithless

Having been in a monogamous relationship since my early 20s, and having maintained a number of close friendships for longer than that, I’m fortunate to have trust and loyalty woven into the fabric of my life. Trustworthy relationships give you confidence and optimism and a strong sense of who you are.

So when my own body let me down so spectacularly, my response to its treachery was dramatic. Given it’s only five months since I was diagnosed, I haven’t really had time to process these emotions but I’ve found myself pondering it a great deal in the post-radiotherapy shake down.

As is always the way, I suppose, I didn’t see this betrayal coming. In fact in times gone by, if I read a trashmag article like ‘Tana Ramsay’s heartbreak’ or whatever I’d think “How’re they going to come back from that? Thank God that’s not me!” then shudder before turning the page (you know that feeling, right?!)

When I look back on the early posts of this blog, it’s easy to see the naiveté and denial therein. Back then, I really struggled to reconcile the way I saw myself with the reality of my situation. In fact, let’s face it, this is an ongoing struggle for me.

But it’s little wonder the news was met with (metaphorical) fast head shaking. I hardly drank alcohol. Hadn’t smoked for ten years. Practiced yoga every day. Ate well. Loved my family, my friends, my work, my life. I was one of the healthiest people I knew. What’s a person like me doing with cancer?

People keep telling me that I need to be kind to myself. I’m not entirely sure what this means, although I’m pretty sure it doesn’t mean the kind of self talk I’ve subjected myself to lately.

“SO you want to start exercising again, huh? Get the ‘yoga glow’? You could, but what’s the point? You looked after yourself before and look what happened. So have a drink! And some chips and chocolate. Fuck it all. Why bother?”

Now treatment is over, I can start exercising again. There’s nothing stopping me…except me. When the gremlin speaks up, I try and talk it down. Ah, but if I hadn’t lived healthily, maybe I’d have had a more aggressive cancer? Who’s to say my lifestyle didn’t, in fact, make my position less grave?

In the meantime the little bastard is doing a pretty good job of stopping me from starting. But you and I both know I will get over myself. I’ll be nervous as hell before going into the yoga class, but I’ll go in. I’ll wince as I open my arms, feel the tightness that may never go away as I stretch my irradiated left side. My eyes will water when I try and reach my toes. My mind will race through the meditation. That night I will sleep deeply and the next day I will wake up sore and I’ll go back and little by little I will limber up once more.

But – it’s a big but – will I ever really trust my body again?

It ain’t over til the flat lady sings

To start, a summary of the story so far. Late July – early stage breast cancer (DCIS) diagnosis received. August – double mastectomy and the start of reconstruction. September – reconstruction continues with weekly injections of saline into the implants. Pathology results reveal good and bad news: good is there’s no cancer in my lymph nodes which means it has not spread (in fact this is spectacular news), bad is that cancer was 95mm long, fast-growing and just 0.02mm from the chest wall (an ‘extremely close margin’). October – consultation with numerous specialists to discuss if radiotherapy, which reduces the risk cancer will recur in by about two-thirds, should proceed. While it is not normally recommended for post-mastectomy DCIS patients, if they are young (!!) and had a cancer that was long, fast-growing and with close margins, it can be considered worthwhile as these are markers of more a resilient disease. November – decision to go ahead with radiotherapy to the entire left chest. Necessitates deflation of right falsie to about half its size, as inflated it was getting in the way of the radiowaves reaching the treatment area which covers about 6″ square extending from the centre breastbone to the left armpit and down to the lower bra line. Skin gradually reddens over the course of treatment and ends up looking like There’s Something About Mary‘s flatmate.

On Tuesday 10 December, the radiotherapy I’d attended each week day for five weeks finally ended. I took about 35 selfies, finally uploading this one to Facebook with the message ‘it’s over’.

But as the ‘likes’ poured in and the declarations of ‘great news!’ mounted, I sorely regretted saying it’s over because it isn’t! I have many, many rivers to cross. While it’s a huge milestone to have finished radiotherapy – I have officially done all that is medically possible to rid myself of cancer and am genuinely pleased that I don’t have to undergo treatment every day anymore – the celebratory Verve and vol-au-vents tasted bittersweet to me.

My mind has turned to the numerous appointments with my plastic surgeon that lay ahead. Once my skin has recovered, there’ll be another surgery to exchange the saline bags with the ‘real’ fake boobs. Down the track, the irradiated tissue is likely to seize up around the implant and require yet more surgery. Also, I’ll have follow up consults with the cancer surgeon every six months.

If the practical hoo-haa was all there was to it, that’d be fine. But it’s bleaker than that and emotionally right now, I’m a dog’s breakfast. With radiotherapy requiring daily to-ing and fro-ing, I haven’t had room in my head for cancer anxiety, but it’s creeping back. What if I’ve gone through all that and it’s not enough? What if it comes back? My body’s proven it can betray me. Can I trust it again?

Experiencing this against the backdrop of euphoria is a nightmare. It’s the old expectation versus reality thing, and it’s not the first time either – once back from hospital after my operation I was on the receiving end of a flurry of congratulations I. Just. Did. Not. Want. I remember, too, being surrounded by celebratory flowers whilst nursing Amy and feeling guilty that I wasn’t on cloud nine. I was in post-partum pain, blindsided and overwhelmed by the new responsibility just at the point people were ready to leave me to it.

I have that same feeling now. Those around me are desperate for closure. “How are you feeling?!” they ask, as if they’re an interviewer shoving the mike in the face of a winning sportsperson at the end of an epic match. “Oh, very relieved!” I say, not wanting to see the smile on their face dissipate.

Still, asking me how I feel is far, far preferable to telling me. Many have declared “You must feel delighted/relieved/like celebrating/so happy!” It’s delivered in such a well-meaning, positive way, I just don’t have the heart to be honest. “Yes, I do. And tired!” I say, hoping that explains the lack of enthusiasm in my response, plus I am tired, to the bone. Inside is a hatful of hollow. Later on in the day of unwanted congratulation, I’m relieved to receive an email from a friend, who unwittingly articulates everything I’m feeling (how ironic!):

My writing isn’t sufficient nor is it appropriate I think for me to say things like “you must be so [insert descriptive word]” but it isn’t my business how you ‘must be feeling’. I won’t ever tell you how to feel, or what to do, or what to think cos it’s none of my  business and if ever anyone ever dare do that to me, I would frown and tell them to fuck right off.

I was so grateful to read this. In his book C: Because cowards get cancer too the late John Diamond talks about friends who never come to terms with his illness and how he senses their impatience for him to recover so things can get back to normal. In the meantime, his reality is a thorn in their side.

I know there is true love behind the relief people feel on my behalf, but what use is this relief if I don’t feel it?

PS: Please don’t panic if you’ve offered your congratulations, or suspect we had a “You must…” interaction. I am a work-in-progress (aka big fat hypocrite) on this front, having only yesterday told my divorced friend that she ‘must’ be looking forward to Christmas with her son. She responded “No. He’s with his dad. I’ll be on my own on Christmas day.” Right then…

Discomfort blanket

A couple of years ago, I wrote an article Job titles: Who do you think you are?, which provoked more commentary from Flying Solo’s audience than any other piece I’ve written.

It described how tricky it can be to define exactly what you do professionally. Descriptors have authority, but also come laden with assumptions. When I describe Flying Solo as a community of independent business owners, it’s often assumed I mean entrepreneurs, when very few are, in fact, entrepreneurs. And what’s more, most are not even entrepreneurial, which is just as well, because if they were they wouldn’t need the support and advice we provide.

People defy labels and their attending prejudices all the time. There are mothers who aren’t maternal, successful people who aren’t happy and psychotherapists who are in terrible mental health.

Then there are people with cancer who are in pretty good shape.

Often, I don’t think I behave as a ‘real’ cancer person is expected to. For instance I cycled into town on the weekend, where I bumped into a dad from school. He clutched at his chest “What are you doing on a bike!!” It was as if I’d escaped from an asylum. He went on “It’s brilliant! You’re out! It’s so good too see!”

If I’m surprising folks for that reason, then I’m happy. It may seem disingenuous of me but I don’t feel comfortable being called a cancer survivor/fighter/victim. Obviously it’s not technically untrue, it’s just that most people’s assumptions about how dreadful it must be to have cancer fails to capture how I feel about the experience as a whole. And it is an ‘experience’ – it’s something that’s happened, it’s not who I am.

As a side note, I don’t see myself as brave either, because that implies a) I had a choice in the matter, which I didn’t given I want to parent and live, for a long, long time and b) that those who perish failed to be brave enough, which is clearly untrue.

As a word-lover I’ve been fascinated to observe how incredibly powerful that six-letter word is. ‘Cancer’ shocks and scares like no other word I’ve uttered. In the UK there was a campaign that aimed to disengage this stigma. It declared “Cancer: it’s a word, not a sentence.”  But many people assume, very wrongly, that you’re going to die. Just like many also assume, again, very wrongly, that depression isn’t a real illness, when in fact it can often be not only debilitating, but also life-threatening.

But the little c is part of my world now so I have to accept the power and responsibility that comes with that. And if I don’t want to be seen as a victim, which I really, really don’t, I can’t go beating people around the head with it.

For instance, the other day after my treatment I got pulled over by the cops for speeding in a school zone. I gave my explanation – that I was from New South Wales and didn’t realise I had crossed the border where the time was different – and could see he was in two minds about whether to issue a ticket. “Do you have anything else to say?” he asked.

I looked over at my branded bag containing my gown and lotion. “See that bag? That’s the logo of the Premion cancer facility. I’ve just finished a radiotherapy session and am on my way to my psychotherapist, who’s helping me make sense of this total and utter nightmare of a year, and he will ask me questions about my dead parents and my children and I will weep and weep. I will then head back home to my daughter and baby son, who are with their father.”

Is what I could have said. Instead I said “I’m sorry, it was a genuine mistake.” And he let me go with a warning. My powder was kept dry.

That bag. Honestly. It was as if it contained the Ring, or a light saber. I could have easily, easily pulled it out and got off for sure. Might I have been so principled if he’d written the ticket? I think so, although I guess we’ll never know for sure.

Brené Brown calls oversharing for attention ‘floodlighting’, because your conversation partner is dazzled and discomforted by your words.

At the psychotherapist later that morning, the receptionist told me in detail about her lousy day so far. It made my tongue bleed I was biting it so hard. The treatment. The run in with the law. “Your lousy day, huh?” I said. But again, only in my head.

Because how can I claim to not want to be identified with cancer, yet at the same time wrap myself in its protective tentacles?

Numbers game

My mate Mike is the smartest guy in the room. An expert on stats, he described a phenomenon whereby people identify with numbers in a way that is convenient to them. For example if you hear that 80% of people earn more than $x per year, and you earn more than $x you’re likely to think “That sounds about right.” Whereas if you learn less than $x you’re more likely to think “It’s got to be more than 20%, surely?”

Similarly on people’s wedding day, neither the bride nor groom believe theirs is going to be one of the 33% of marriages that end in Splitsville.

I make this point because I think we believe we can defy stats. I know I did. I thought I could avoid what’s turned out to be my genetic destiny through my behaviour. For the last decade, I’ve felt healthy and looked after myself. Before my diagnosis, the likelihood of developing breast cancer seemed fairly remote, in spite of mum dying from it. I understood my chances to be about 1 in 8 (versus 1 in 12 for the general population) but conveniently I identified with the seven, and never the eighth.

Until mid-2013, I’d done a pretty good job of avoiding life’s slings and arrows. About 1 in 200 mothers my age have a baby with Downs’ Syndrome – not me. A surprising number of my demographic have addictions, to alcohol or maybe prescription medication – again, not me. I’d never even stayed the night in a hospital. I perceived the avoidance of suffering as a right. It was my modus operandi, my default, and I bet I’m not the only one. I was disgusted by my diagnosis. Cancer had no business making itself at home in my body, no business at all. I felt unlucky, but stopped short of saying “Why me?” because a primary school biology lesson could explain that one.

Now I’m one of the Others, things look and feel v-e-e-e-ry different (note: not worse). While I feel brutalised by life and betrayed by my body, and my ‘you never know’-o-meter is far more sensitive, my sense of appreciation, my love for others and my appetite for risk has never been keener.

As well as introducing you to extremes on the emotional spectrum, cancer is a catalyst for more fundamental life shifts. This isn’t always welcome, although arguably things turn out they way they ‘should’ have prior to the life-changing news

If friendships are dodgy or work isn’t working, or your heart’s not at home, the diagnosis exposes this almost instantly. I was fortunate to have foundations that proved solid, but for many cancer is, I think, more stressful because it puts you in these confronting positions. I reckon this quote does a nice job of explaining the way adversity brings out the truth.

It exposes the most raw, vulnerable and honest version of us. It can be unsettling, though, to look that deep into our soul and see who we really are. But it’s also profound. In fact, I think it’s necessary, because it’s where find our real voice. So we’d better come to peace with that version of us; and learn to respect and trust it.

Even if you’ve avoided severe adversity to date, life will send a wave your way and there are three things you can do when it does:

You can run from it, but then it’s going to catch up and knock you down. You can also fall back on your ego and try to stand your ground, but then it’s still going to clobber you. Or you can use it as an opportunity to go deep, and transform yourself to match the circumstances. And that’s how you get through the wave.

Every time I’ve struggled, it’s because I was running from the wave, railing and thrashing against my reality. My keenness not to suffer forms part of my suffering – textbook entitled-Westerner response, I’m guessing. I tell myself to surrender, but still have dreadful days where I get all Verucca Salt-like.

Most of the time, though, I do try and go deep.

It’s hard down here. Sometimes I worry that I’m going crackers. I think of oddities, like Eleanor’s drawings. Why aren’t I in them, darling? Because you’re always at the doctors. I think of everything I have, the amount there is to lose. It helps me keep hold of my breath, even though I’m turning blue.

In just five treatments time, I will gather a last surge of energy and push up from the seabed. And I will breathe again.