Month: November 2013

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.