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.

The Wall

At the start of my course of radiotherapy I made myself a promise. Each day, I would avoid the lift and instead climb the three flights of stairs to get to the facility.

So far I’ve kept that promise. Even if I’m running late, which I do a lot, or if I have to return to the car for something, I use the stairs.

I just can’t articulate why it matters so much that I do this. I suppose it’s a small act of defiance in the face of being told time and again that I can expect to feel tired and sore, especially towards the end of the course of 25 sessions. Surely as long as I can manage the climb, I can manage the etc, etc.

And so far it’s encouraging news. My skin is holding up well. I’m not too wiped out although this morning, each of Amy’s requests for porridge were like an Inception-knock back to consciousness. Still I’m up to do the 90 minute round trip drive alone (my preference) and have been going to the hospital with a kind of head-down resignation. I have been doing alright.

But two days ago, when heading in for treatment 16, something strange happened. I arrived just in time for my appointment, but got stuck at the foot of the stairs. I had this ridiculous conversation with the voice in my head.

‘No. I can’t. I just can’t. And I won’t! I’ve had enough. I want out.’

‘But you have to do it, Sambo. Come on.’

‘No way!’

For several minutes this terrifying dialogue took a hold and left me immobilised.

Once I’d finally hauled my sorry, demotivated arse up there, I found the unhelpful chatter continue whilst having the treatment. Much of the 20-minute appointment  is spent setting me up. A team of two move the gurney, shift me here and there, mark me with pen. Then they check one another’s work, which reminds me of a cabin crew disarming the doors and crosschecking. Actually the team’s disengagement with the job is also reminiscent of a flight crew’s. Normally I go into shutdown mode during this tedious process but on that day, I found that impossible. I felt like a piece of meat on butcher’s block and had to set my jaw to fight tears.

On the way home, normally a neutral affair, I found myself raging at the bullshittedness of everything. This is just bullshit. It sucks! I’m seriously over this and so on.

By the time I got back home I was a tinderbox ready to explode in the face of the next person who dared to crossed me. Fortunately, everyone was in good cheer, which gave me a chance to come down from the stratosphere and calm the fuck down.

Later I was reflecting with Ted that maybe I’m feeling it because I’m not quite at the brow of the hill. I’m past half way, but it’s not over. I emailed my friend Jodie, a marathon runner, to ask at what stage in the race she really felt the pinch. She responded:

There were two times when I really hit it and both were when I got an unbearable stitch (on a 38km training run and in the actual 42km race, both at about the 30km mark). I hated it. In the race I remember telling myself I was above the pain and all that, and that got me through for a bit, but I also remember having the distinct thought: Remember this feeling: it’s not fun. This is not fun and I don’t want to be here.

Both times it was a matter of “just get to the next lamp post and see how you feel”, then “just get to the next corner and see how you feel”. I don’t know what the “see how you feel” part was about – maybe tricking myself into thinking there was a possibility of stopping when I got there. But of course, when you do, the next corner’s not that far away. And so you keep going.

Today’s treatment was hard but better and tomorrow’s will be too, I hope.

I hope.

Foreigner

War is said to present a man with his life’s biggest challenge. The female equivalent is, so they say, childbirth. Both are experiences that tilt your world on its axis and afterwards, you never see things in quite the same way. I’d argue that sitting across from a medical professional who’s saying the words ‘you’ and ‘cancer’ is similarly defining.

Each of these things will put a distance between you and people who’ve not been through it. One of the most challenging elements of cancer for me is no-one knows quite what to do with you, nor do you know what to do with yourself. Interactions are either emotionally heightened or avoided. You’ve got the ultimate trump card, whether you want it or not. If I say “How are you?” and the person’s having a tough time, they don’t feel entitled to say. So they respond “Not great, but…it’s nothing compared to what you’re going through.” And there we are, in the conversational cul-de-sac until I let them off the hook with a platitude or two.

To be fair for every clunky conversation, there have been a number of amazing and soul-searching discussions and I’ve definitely received more love and hugs – both real and virtual – than I would have done without the diagnosis. Another silver lining.

And as well as distancing you from those who’ve not been there, the axis-tilting forges alliance with those who have. Before children, and cancer, the closest experience I’d had of this was during a truly dreadful year in recruitment.  “It’s like the trenches.” said my friend Chris (aka Tex) of our time working together “You don’t know if you weren’t there.” It was during the dot com crash and it’s true that in that crucible, filled as it was with tears of pressure and laughter, a remarkable team spirit arose and although I’ve got very little in common with Tex – he’s a gun-owning, card carrying Republican – I trust him entirely.

In the last week, three friends have set foot in the landscape that’s my reality, but a hitherto foreign place for them. They’ve not actually Gone There, but each has a fresh appreciation of my current world.

First up was Faye who, after our night on the town came with me to an appointment with my cosmetic surgeon. From my perspective, it was a routine check up whereby the doctor and I talked through some decisions I need to make prior to my next surgery, after which she checked my reconstruction to see how it was holding up to the radiotherapy.

Afterwards, Faye and I sat on a bench and she said in a humbled, and slightly shaky voice “Sambo, I… I get it. I mean, I don’t obviously because I’m not you but… wow. That stuff. It’s hard core. You’re amazing.” And of course, the little cup of grief I hold on to so carefully got spilled and we had a cry together. Soldiering on, I forget that grief is social.  For that culture to bloom all that’s needed is for someone I love to show concern face to face.

That afternoon, a friend whose daughter is at preschool with Eleanor texted to say she’d had a mammogram which resulted in a biopsy. She’d get the results in two days. I missed her when I phoned but saw her husband at the school the next day. We exchanged a mime:

Him: My God! How full on is this?
Me: I know, right? Right?

Then the verbal exchange which I, with the interesting experience of having the shoe wedged on the other foot, fumbled my way through. Can I take Zoe, is there anything you need, just give me a call and all that.

Then back home I found a card from Laura who shared an incredibly sweet and reassuring sentiment. She explained that thanks to a nasty exchange at the hands of her dentist:

…it totally hit me, for the first time really, despite my avid following of your blog…what it is that you have been enduring these last few months. I am so sorry it took my own feelings of helplessness to get there, but I did. It’s not to say I haven’t been paying attention, but suddenly I really thought about all the sucking up and being brave you’ve had to do and it humbled me and made me so very proud of you.

The next day my heart was full of empathy for my friend stuck in the hideous no man’s land of results-waiting. That afternoon I saw her in the supermarket and gave her a hug.

“Are you well?”

“Yes! It’s all fine. It was nothing.”

“Thank God! That’s brilliant. I’m so glad.”

And I was, genuinely, so, so glad. But back in the car, when I started to cry, I honestly don’t know how those tears might have looked under a microscope.

Tears of happiness, magnified.
Tears of happiness, magnified.
tears of sadness, magnified
Tears of sadness, magnified.

The real secret

There’s an old (about to be paraphrased) story about a woman who buys a monkey’s paw from a dusty old emporium and is told it will make her wish come true. She wishes for a million dollars and goes home to find a man with a suitcase of money… which turns out to be compensation for the fact her son has been accidentally paralysed at work.

I’ve thought about this a great deal of late. What if The Secret isn’t actually ‘ask, believe, receive’ but rather ‘ask, believe, receive…at a price.’

There are a few things in my life that wouldn’t be here if it weren’t for the little c. Silver linings, blessings in disguise, call them what you will but while you wouldn’t wish cancer on anyone,  I think a tally at the end of this bastard’s banquet will reveal a net gain. 

New boobs Earlier this year, I bemoaned the unevenness of my breasts and flirted with the notion of having them cosmetically altered. I even researched what it’d cost and decided it wasn’t worth $10,000. Now, I have paid that princely sum and more to a cosmetic surgeon and am on my way to having perfectly symmetrical breast-shaped objects. True, there’s no nipple on one side and I’ve lost all sensation within them but on the plus side, I will never have to wear a bra again. All because the real ones tried to kill me.

A writing opportunity At a similar time I remember feeling extremely frustrated about wanting to write or blog about something truly meaningful. I wondered about becoming a mummy blogger. I’m sure I could have churned out a number of witty pieces about becoming a professional arse wiper, losing your identity and your shit, but the notion just didn’t excite me. Lots of head racking later, the universe whacked me around the head with a doozy of a muse. And here I am.

I’m less hefty Also at a similar time (I must have spent months whining) I was annoyed that I couldn’t squeeze into pre-baby clothes and so embarked on regular exercise, which kind of helped but only marginally and only slowly. Then those stubborn post-partum kilos flew off during the what I like to call the “waking at 2am and fearing for your life” diet. Fact: people with cancer do lose weight. Anxiety will do that to a person.

An increased appetite for risk I’ve got a severe case of the “fuck its” these days. That bit of money under the mattress, let’s invest it (once we’ve paid for the new boobs of course). Faye, you’ve been saying for ages we should chuff off to Surfer’s Paradise for a night out. Shall we do it? Let’s do it! Because, well, YOLO, right? Please trust me on this: Y really, really, really OLO.

Reasons to be cheerful The broader, low level, lingering depression I talked about in this post has all but gone now. Instead of plunging me into a ‘proper’ depression the cancer diagnosis flung the windows open and all the whiny, fusty air flew out to make way for my new reality. I was shocked, scared and anxious, but not depressed. There was shit to do! Still is.

But when it’s all over, which it will be soon, I will regard life with a renewed sense of gratitude.

I will sleep at 2am.

I will make packed lunches with a smile.*

Each and every God-given day, I will celebrate the fact that I’m here.

I am here!

*except for this morning. This morning having to do that made me batshit cranky.

20/20 vision

In the months prior to diagnosis I had a brush with depression. Some other weird stuff happened and in hindsight, it’s tempting and more than a little convenient to see that as the gathering storm.

But at the time, I couldn’t make any sense of my uneasiness with the world. With three healthy and happy kids, a loving relationship, an amazing business and job, money and means, feeling down seemed ridiculously self-indulgent. I was the picture of “the worried well.” Ennui, defined as “a feeling of listlessness and dissatisfaction” is a word that both describes the emotion and speaks volumes of how pretentious and up my own arse I felt I was. I had no right to feel distressed.

The doctor put it down to hormone fluctuations from ending breastfeeding, tiredness from having a baby blah blah BUT she also diagnosed me with low iron. Supplements saw me ping back to life. It was brilliant. I felt so much better but things still weren’t all that. No proper reason presented itself and eventually, I chalked it down to a bog standard mid-life crisis. I was highly preoccupied by the fact 20 years had passed since starting University and that mum was 20 years older than me (59) when she died.  With 20 years passing in the blink of an eye, I found myself having serious conversations with the universe which seemed to be casting a spotlight on all my choices and asking “Is this really what you want?” I distinctly remember having a panic attack when I realised that over a decade of packed-lunch making stretched out before me. Add a dash of Oh My God I’m Going to be 40 in February to the mix and there was, it seemed, a satisfactory recipe for melancholy.

Then came Angelina Jolie’s news and I found myself riding a fresh wave of grief over my mother. At last, something proper to hang my misery on, although I can’t honestly say for certain that’s what was going on. Still, I felt a genuine and urgent need to know about the woman my mother was and so wrote long letters to her three oldest friends, asking them to share their impressions of her with me. I also had teary conversations with bemused friends asking them to swear they’d continue a relationship with my kids if anything happened to me and that once they’d grown up, they’d let them know what sort of person I was.

Heavy, right?

Slowly and surely I was circling in on the life-altering moment, but that I may already have cancer was not even on my radar. Angelina got me thinking about gene testing, not about having a mammogram. This seems incredibly naive and irresponsible to me in hindsight and nowadays if any woman I’m conversing with lets slip that they have a family history I seize them by the forearm and hiss “Get screened!” But in my past world of denial I had always assumed that if I were to be struck down with cancer, it’d happen in my 50s, like mum was and what’s more I also secretly thought I wouldn’t succumb to it, because my lifestyle is a good deal healthier than mum’s was. So when I returned to the GP to ask about gene testing I got talked through the process to discover it started with, you guessed it, a mammogram.

One evening the week before the mammo I was briefly but extremely unwell, with a headache, nausea and an inability to control my temperature which saw me shivering violently even though I was wrapped in blankets with a hot water bottle. Whenever Ted checked on me I’d growl at him to fuck off. It was frightening. After a few hours, the symptoms subsided and I fell asleep.

The next day, we had lunch at a friend’s. I thought I was fine but Hels repeatedly asked if I was okay. I described the funny turn and the mid life crisis, the heartfelt letters and the impending mammogram.

I’ve since wondered whether the episode was a warning sign. This and all the other palaver may or may not explain how come when I had the mammogram and resultant biopsy, I actually felt calm. The specialist who took the sample was not one for sugar-coating, describing how what he saw was ‘very consistent with cancer’ so by the time I saw the GP for the results a few days later, I was totally ready to hear them and would describe myself as confronted, but not surprised. 

Two weeks later, my breasts were gone.

I was not glad to get that result, but I was glad the angst and emotion I had suffered finally found a very reasonable target. Take THAT, ennui. 

How lucky I am that now, rather than staring at my navel or my crows feet or my cellulite, I will approach 40 without caution or misery but with profound, unrestrained and well-earned joy.

Radio Ga Ga

After gowning up for today’s session, I was given a reusable bag to keep the gown in for the duration of the treatment. This gesture made me ridiculously despondent. Then during set up on the gurney the in-the-way right foob had adjusted its shape again and needed to be secured out of the way with masking tape. I thought, really? Is this going to work? The technicians leave, the DO NOT ENTER sign clicks on. Their spy camera moves a fraction. I want to cry but can’t. Can’t because it’ll move my position. Can’t because I’m being observed, by the technicians out of the room and the machine inside it. My mind says “Let’s try some visualisation. Imagine a beach” and then my mind says “Are you fucking insane?” I’m Dakota Fanning in War of the Worlds. Still. Scared. Watched by a machine. There’s a dreadful pause before the long ERRRRP buzz sounds as the invisible beam finds its target. The tears come now anyway and spill, as predicted, into my ears. My chest wants to heave as I weep, but I have to keep still, so I do a bizarre pant, last used during labour to get me through the next three minutes. I endure the pause-ERRRRP three more times. Then it’s lights on, “You’re free to go!” and I storm outta there like a bullet from a gun.

In the change room, I reach for my magic cream to find I’ve forgotten it. I long exhale to the nurse’s desk. She is a proper nurse: plump, crisply uniformed – like Hattie Jacques only warm. I manage “I’ve forgotten my cream” before my face crumples. She takes my hand, leads me to a room and embraces me as I weep and snot into her shoulder.  On the way to the room I think once again about the amount of tragedy these uninspiring pastel walls have contained. “Let me look at you.” says Hattie, and I lift up my top. “You’re going to be fine.” she says, giving me a speck of light to stay with. She passes me a cream “Use this.” she instructs and I do.

Head down, I go back to the car where I do some good old-fashioned steering wheel thumping accompanied by primal screaming. Then I shake my head like a wet dog, dry my face, neck some water and drive off.

On the way home I talk to Faye about the pain because, did I mention, it hurts? Since diagnosis, physical pain has been well within the manageable realm. And I’m sure this will be too but given this is just the beginning, (today was treatment 2 out of 25) I’m nervous about what’s to come. Currently, it feels like moderate sunburn and was painful enough for me to take Panadol.

The damage radiotherapy does is often described as burning, and remedies such as aloe vera are touted. However, radiation wounds are not really burns, and they are not rated by degree. Here’s how one Radiation Oncologist describes it:

Radiation wounds are not “damaged” skin, per se, as much as they are “missing” skin…radiation causes skin to fail to reproduce properly, and thus as you “use up” your normal skin, like we all do all day, there are no new layers of skin coming up from the bottom. So eventually the area can ulcerate. This might look like a thermal burn, but it has very little in common with a thermal burn, and the treatments for thermal burns will not help much.

*shudder* Isn’t that gross? It’s enough to send me scurrying back into the HBOT chamber, where I’ll go for daily sessions for the rest of this week. Anything to help replace the missing, soon-to-become ulcerated skin. That it may also help to ease the pain is no small thing, although in the meantime, and on Faye’s excellent counsel, I’ll be maxing out on Panadol for good measure.

HBOT is the same complementary therapy I was originally going to do daily with the radiotherapy, then someone online called Boris suggested waiting til the end of radiotherapy to do it, but now it’s back to plan A.

Keep up, people.

Back home, I manage to embrace the kids without wincing.

“How was it, Ted?”

“I need to pee. I’ll tell you after.”

Next thing, I’m laughing and laughing like the crazy lady I am.

“What is it Ted?”

And it all makes sense.

PMS1

Ready for radio

So my radiotherapy starts tomorrow at 4pm and with all the melodrama contained within my last post, you may think I’m weepy and hand-wringy but in fact, I feel completely ready and calm. It’s tempting to ascribe this sort of resilience to The Experience and How Much I’ve Grown etc but in reality, long term moodiness is unsustainable for me because it’s so, so dull.

Here’s a summary of last week’s events. I had a planning session at the radiotherapists whereby I was lined up on the machine, measured and tatooed then taken to a different machine for a CT scan. My radiotherapist (RT) called to say the scan showed my right foob was in the way of the beam that was going to the middle of my chest. So she asked my cosmetic surgeon (CS) if she would fully deflate it. The CS said this would lead to a risk of a build up of painful scar tissue. I had a tantrum. Then I pulled myself together and established from the RT that the part in the way of the beam was on top, and not beneath, so I asked whether a partial deflation could work. This would hopefully move it out of the way whilst minimising the risk of both building up scar tissue and knocking down my ego. RT agreed it was worth trying so the CS removed 200ml out of the 425ml from my right implant.

And luckily, it worked.

I found this out after I took my new lopsided form back to the radiotherapist’s for another go on the machine, where three operators buzzed around me, consulting with the chief RT in very technical language about how to optimally position me so my right chest and its lower profile is out of the way AND the beam avoids my heart. “I don’t say this publicly,” the RT whispers as they confer “But these are my best people.” The atmosphere spoke of a highly engaged team attacking an enjoyable challenge – a difficult Sodoku, perhaps. The lights are dimmed, which adds to the theatre (and the general wanting to get the fuck out of there, to be fair.) Anyway in the end the solution was, as solutions often are, simple and elegant and involved inserting a shallow wedge under my left shoulder.

More good news is that although the deflated side is definitely smaller, it is not terribly noticeable when I’m clothed. The main difference I think is the texture, which is slightly squidgy versus the hard shell that was there formerly. When I look down it even, dare I say, looks normal but the mirror reveals the very abnormal sight of folds of skin on the underside. Not to worry, I’m quite good at avoiding mirrors.

Today I had a hot shower and shaved my armpits. Neither are permitted during therapy. I have bought a car charger so I can listen to Spotify via my phone which will keep me company during the long drives. I have offers of help which I will gratefully accept. I have my Miaderm cream and some new yoga clothes to wear to the sessions. There are meals in the freezer.

I am ready.

Collateral damage

Did you know that if you put a frog in pot of very hot water, it will try to jump out, but if you put a frog in cold water and heat it up to the same very hot temperature, it will stay put?

I am that stationary frog. If I had to travel the distance from before cancer to the latest dilemma each time, I’d go coco bananas.

So instead of reliving the cold fear accompanying the biopsy, the diagnosis, the notion of abandoning your family, the operation/mutilation, the pain of reconstruction, the fear of what you’ve bequeathed you kids, the dodgy pathology, the medical ambivalence, the toxic treatment and its long-term side effects, you put a bookmark in somewhere towards the end and take your broken self from there to the next challenge.

Which for me came in the form of this message:

photo
Yes I have a preference! A very strong one, and it is to Fuck This Shit. But of course, Hobson’s choices have become my stock in trade and I will respond like a good patient once I’ve made the ‘best decision’ whilst reminding myself there is no such thing, there is only best guess and living with it.

The devil is to deflate the implant and risk internal scarring, but keep it out of the way of the radiotherapy beam. The deep blue sea is to keep the implant as is and accept a bit of the beam will spill on to it. So even though it is unaffected by cancer because it gets in the way it’ll receive the treatment. Collateral damage. The real problem is down the track, when there’s a high risk of implant rejection. I’ve accepted this reality for my left foob, that the right may suffer as well seems like a bridge too far, no?

People often say, in a way that’s meant to be kind but often only amplifies my sense of isolation “I just don’t know how you get through all this.”

At this very second, I don’t either.

Freak out

Making major health decisions is a tricky business. Particularly when you are hell bent on pushing up against experts and challenging norms. The choice to have radiotherapy was perhaps the hardest of all, and as the start date looms, I’m finding I need to really work to keep my nerve. The pamphleture is not helpful here. When describing the process it states that after you are set up on the machine “The medical staff leave the bunker and survey you via camera.” The bunker? Surveillance? Hell’s bells. I’m expecting tears in my ears again.

Recently I’ve found myself party to a number of claims which, pre diagnosis, would have washed over me. Low magnesium causes cancer. Vegans don’t get cancer (*looks skyward* is that right, Steve Jobs?).  Stress causes cancer. Let me tell you why I got cancer. My mother, the person who, ya know, made me and all, had a gene that instructed her tits to kill her. And I inherited that gene. I’ve not been tested, but I know it’s true. It’s a total non-mystery. Perhaps it’s the case that genes load the gun and environment pulls the trigger. Having three young kids is quite stressful. But what sort of mentalist goes around wishing their greatest source of joy didn’t exist? Exactly.

Hot on the heels of the ‘why you get it’ claims are the ‘how to fix it’ claims. The most unpalatable I’ve seen is via a Facebook photo with a message that ‘traditional cancer treatments don’t work/are carcinogens and are perpetuated because it suits Big Pharma’. This kind of stuff is SO EASY to say and consume if you’ve not got it. If you have, it’s emotional TNT. I’m pretty open about this experience, but that shit sticks in my craw, my friend.  You’ll probably remember sprouted bread‘s claim that oxygen therapy “kills cancer cells and stuff like that.” Wound me up no end.

I am all for questioning conventional wisdom, but in the words of Tim Minchin:

“Alternative Medicine”…
“Has either not been proved to work,
Or been proved not to work.
You know what they call “alternative medicine”
That’s been proved to work?
Medicine.”

It’s complex, though, because no sooner do I get all stabby about it than I seek it out.  Oxygen therapy is an alternative (or more accurately, complimentary) treatment that is backed up by successful scholarly reviews which prove it expedites the healing of damaged skin and tissue, hence its use amongst professional athletes. Even reviews that apply gushing testimony like ‘it’s a cure waiting for a disease’ dismiss the cancer claim, or hedge their bets with the ‘not enough evidence’ argument.

On the verge of booking up a series of sessions in the oxygen tank (and dropping more than $1,000 in the process) I tried to find out more as to when it is best administered to prevent the common side effect of radiotherapy on women with implants, namely capsular contracture (basically too much scar tissue). I was going to do the treatment on the same days as the radiotherapy, but then read that’s not advisable. Some reports say to do it before. Others after. Others say because it can take months for the scar tissue to build up, you should wait till the damage starts to show itself, then have the oxygen therapy. I was confused, confounded and with radiotherapy starting on 4 November, running out of time to decide. I told my psych “I feel very alone trying to work all this out. I wish someone would take my case on and tell me the best thing to do.”

He pounced on this. “Like a mother figure?” “YES!” I cried. Cue furious note-taking.  But on reflection if mum were here we’d probably be arguing about what to do. Arguing was our specialty. I’d doubtless be moaning about her muddying the waters.

As it is I’ve chosen to hedge my bets and do a series of oxygen treatments before and some soon after radiotherapy finishes. Embarrassingly, I’ve chosen this strategy based on a totally random doctor’s recommendation. He’s called Boris and probably got his doctorate online. I can’t find any of the ‘UK protocols’ he cites. So maybe I’m nuts. But it’s obvious by now that no-one actually knows what’s best, let alone when’s best, so I’ll just empty my wallet and cross my fingers.

Once I had made an uneasy peace with that decision I started to feel less daunted about the radiotherapy itself. I also enjoyed the first session in the oxygen tank, where I read a book and had a doze and arrived home to have Ted tell me my skin looked revived. Did it? Who knows. My usual 4pm dip in energy didn’t happen, but that was probably because of the nap rather than the oxygen.

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So I was feeling pretty okay up until this afternoon, when I got a phone call from the radiotherapist to tell me that to effectively administer the radiotherapy, I’m going to have to have my right foob deflated. To the accompaniment, I imagine, of a descending penny whistle. I’ve had to get a rush appointment at the plastic surgeon to have this done. Ain’t that a hole in the bowl?

Over the weeks to come, I’ll be reconfronted by the awfulness of everything. A reddening, flaking tortoise shell of an implant on the treated left side and a fuck-knows what on the other. My clothes won’t fit.

As I type I realise the break I’ve had was just that, a break. I have to absorb all the oxygen I can and then I’ll have to go deep to get through this.

And now I have to stop, because … you can guess the rest.

Rage against the machine

Recently I heard an interesting observation on trauma. People react in one of two ways: either they ignore it and pretend it’s not happening OR they are defined by it. The middle ground is healthiest. You acknowledge and then you move on. “It happened, but..” Today I learnt for sure that I’m on the denial side of affairs because when we pulled up to the Cancer Care unit for my radiotherapy planning session, the voice in my head kept asking “What the FUCK are you doing here?”

The injustice and incongruence got worse in the waiting room, which was full of old people, wanness, distress and dis-ease. I finally stop thrashing around and by the time I head into the session, I’m resigned. On my way out of the door, I glance at Johnno and Theo, who’s beaming, and I’m sadder than I’ve felt in a long, long while.

Here’s what happens next.

Just change into the gown and pop your clothes in the basket. (The basket and gown give me the Fear). Come through. You just need to lie down and put your hands over your head. Now I’m going to move you, don’t try and help me. Okay good. I’m just drawing some lines on you here and where they cross I’ll give you a small tattoo so we know where to direct the light. Keep nice and still. Mullumbimby is a lovely part of the world isn’t it? I grew up (OUCH!) near there. I’ve got (OUCH!) friends who live in Station Street. Just two more now. Lots of verrrry fun parties in Mullum. (OUUUCH! Mother fucker! x 2) You can rest your arms now. And you’re done! I’ll let the nurse know you’re ready for your little chat, then I’ll take you over to the hospital for your CT scan, so when you’re having the therapy it’s angled to miss your heart and stuff.

Cheers for that, love.

The nurse picks a few leaflets of the rack hands them to me. I snicker to myself, thanking God I’ve not been handed the cancer of the vulva one. I stop laughing when I scan the rack once more and see the one on palliative care. Grave words pass in this room. I scan the leaflets I have been given and can see I’ve read their contents online. I’m told “Girls get tired around week three but it’s best to stay active.”

Pop. Nice and still. Little chat. Heart and stuff. Girls.

Far out, if the cancer doesn’t get me, the tweeness just might.

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