Category: Surgery & recovery

Say hello, wave goodbye

On the way home, whilst talking about Theo I felt my chest fizzing. At first I thought it was ghost limb syndrome. Shortly after, the pain started to rise up and we had to pull over and fumble around for the meds. Once I could talk again, I said “Of course those little babies have been delivered to me four-hourly over the last four days. I’m going to have to get my head around what I need to take when.”

“It’s the only job you’ll have, Sambo. Mum and I are going to look after you for a while yet.”

“Well Ted, I do want to contribute where I can. I’ve been thinking about the jobs I can do. Prepare an easy meal. Make tea. Do some ironing. Read to the kids. Put the girls to bed. I’ll be fine, so long as I don’t raise my arms above my head, have anything press against my chest or bear weight on my arms.”

“And you can manage your pain.” He looks at me dubiously.

My time at home so far has made a mockery of my expectations, limited though they were. This makes me sad. It’s one thing surrendering to others’ care in hospital, quite another doing the same at home. And having my kids there, yet being unable to do much compounded my sense of helplessness.

I spent much of the day reclined. I did manage to read the girls a few stories, interspersed with barked instructions on where I can and can’t be touched. Meals were magically made, nappies were changed and I am supremely grateful for this, but learning to receive help and letting go of control will be an ongoing struggle for me.

One thing I couldn’t wait for was the reunion with my baby. I think I missed him most of all whilst I was in hospital. After all, he and I have slept together every night for eighteen months – nine inside me and nine out. The nightly act of curling around him and pressing my thumb and forefinger over the dimples on his fat starfish hand never failed to light me up. While he was happy to sleep with Ted while I was gone, I knew sharing the bed post op was not going to work. He is strong now, and squirmy and could easily hurt me in the night.

But I’d reconciled with that and had adjusted to what the doc said was possible, i.e. that while I can’t pick him up, I can have him placed on my knee. Both Theo and I had face cracking smiles when he was put there but before I could even reacquaint myself with his smell, he nuzzled into me, which pulled at the tape on my stitches, causing white poker agony. He was whisked away again. I don’t know what was more painful, my physical reaction or the look of bemusement followed by indignity on his little face. Then, surprise, surprise, tears from us both. He gave me those pissed off cat, fresh from the cattery looks all the rest of that day.

I’ve had a long list of negatives to contend with in the last month, and they vary in gravity. Least problematic are the numerous financial and logistical compromises our family have made. Middle tier annoyances are the aesthetic adjustments Ted and I need to get our heads around and attending amendments to my identity, plus the whole medical/hospital/’pain management’ experience. While top of the pain pops are the whole mental onslaught living with cancer brings (‘brave’ as I seem) and the permanent loss of physical sensation in my breasts plus the loss of my nipple, I am deeply mourning my independence and the inability to give and receive affection to Ted and my children.

Particularly Theo.

Thank God that’s only temporary and when these scars have heeled, I’m going to smother those poor people each and every day for as long as they’ll let me.

24 hours

Thinking back on the first 24 hours post op is a bit like thinking back on a big night out. Some scenes you remember really clearly, others are altogether missing and yet more are recalled only when you’re reminded. Plus like all good big nights out, it’s all out of sequence.

I’ve spent the next few days piecing it together, Miss Marple-style.

I have no recollection of him not being here but apparently as soon as I got in my room I phoned Ted to say “Where are you?” Next up (possibly?) I sent out this blustery Facebook update:

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I remember being very gratified by my friends’ reactions, although in reality the dopamine hit you allegedly get from ‘likes’ would have had no chance against the ridiculous amount of morphine that was coursing through me. I also now know that the ‘cheek’ would subside as the effects wore off and I got to grips with the extent of my helplessness.

But whilst on the high I had a very lovely conversation with Ted (or more accurately, delivered a lecture to him) on the myriad kindnesses I had been shown, focusing in on the wives of my business partners who had sent gifts he delivered that night. I noticed he was looking at me askance, but undeterred, I segued into another lengthy tribute about how lucky I am to have Ted in my life and I couldn’t wait to go home so we could get back to playing with our babies and bickering about the veggie patches.

And then I came down.

Here’s how I recall the following hours, interspersed with numerous missing scenes. Ted’s gone, and it’s dark. A chilly injection through the cannula that’s bound to my wrist with a ridiculous amount of tape (That’s going to hurt when it has to come off, I thought, and I was bloody right as well). Tablets, too, so many tablets. An injection in my stomach. Needing to pee, swinging my legs to the side of the bed, forgetting there are blood drains attached to either side of me, then struggling to pee into a bedpan delivered by a told-you-so nurse. Laughing, laughing, laughing with a friend on Facebook chat, so hard it hurt and I had to click on my drip. Sleeping briefly then waking, heaving and shaking. Nurse? No, it’s a 5.5 now…I feel.. Yes, it’s normal. Take this. Watching the cricket through misty, dormant eyes and listening through muffled ears. Bravado crumbling like the Aussie’s middle order. Feeling flat. Glancing down. Feeling flat.

The next morning, although the pain had stabilised, I was feeling very sorry for myself. Ted, though, was  relieved. “You look so much better! That towel around your head was freaking me out.” He kisses me then presses my face. “Is it still like Edam? … What? That was your description!”

“Was it?” It does sound like the sort of thing I’d say.

“So the plastic tube’s gone. You can’t do Hector from Breaking Bad anymore.”

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I remember my impersonation and this coaxes a smile. “Yes! I had to yank that out, it made my nostrils dry as hell, but when you use the drip you have to keep the oxygen in. Every time the nurses came in I’d be fumbling around, trying to get it back on.”

I sit up, feeling more chipper. “Ted! In the night I had a long Facebook chat with Hollis about creating a Michael Holding alarm clock app. Best business idea ever?”

I show him the feed and he laughs aloud. He reads on to the bit where I admit to having Snow Patrol on my iTunes, which leads to discussion of a suitably middle class punishment (jumping out of a plane, strapped to Chris Martin singing a mournful dirge, further weighed down by recyclable Waitrose bags OR listening to Snow Patrol til I expire from boredom). More laughing.

So it was monologues up, helplessness down, laughing up, heaving down, cricket down, waking up flat, seeing Ted and laughing again… back up.

And then a spectacular down when later that day, Ted helped me to the shower, and we both saw me naked for the first time.

Oh my. My chest was all wrong, like a rag doll’s, albeit with tiny and tidy stitches.

“It’s a work in progress.” Ted said gently. I don’t know how he did it but he managed to strike the right balance between strong but kind, sad but not revolted.

This did not make me cry less. On the contrary. I’ve tried to explain to my kids, when you cry it’s not always just because you’re sad. My tears were of confrontation, adjustment, loss, gratitude and relief. And yes, a healthy dose of entirely understandable sadness.

No doubt I’ll be pressed up against the glass some more before this shitfight finishes. But you know what they say.

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The day of cure

Last week involved lots of admin and trips to specialists (including the anaesthetist Dr. Crilly, who was brilliant) and while I complained at the time, the stillness and silence in the weekend prior to the operation was far harder to deal with. I was steeped in a horrible soup of fear, worry, anxiety, sorrow, trying to enjoy the kids and my boobs, but each ‘nice’ scenario was blotted out by pathos and fear, worry, etc. These emotions were shared, and so amplified by Ted.

On Sunday night I had a conversation with the children about what was happening and how when they saw me again I’d be totally flat chested (the reconstruction is happening separately, later). As young kids do, they took this entirely in their stride.  Amy said “So the doctor takes your boobies off, gets out the splinter or whatever, and puts them back on?” “Well…not quite.” I overheard Eleanor’s pre-bed chatter “Amy can I tell you a story? Once upon a time there was a lady called Sam and she went to the doctor for a few days. They took off her boobies and THEN they put them back on! And when she came home, John and Amy and Theo and Eleanor and granny saw her, and they were amazed.”

I was so relieved to be able to tell them a version of the truth that didn’t worry them, but hugging them tightly and knowing I’d be too sore to do it again for a long time hurt me hard. Bittersweet.

The real low point for me was on Monday morning when I had to wash my body and hair with a special pre-soaped sponge, sealed in a foil wrapper and given to me by the surgeon. That foil wrapped fucker sat in my bathroom all the week before and gave me the hairy eyeball every time I used the loo. Ripping it open and getting on with washing was actually a relief.

That Monday, I found myself on the receiving end of an unbelievable amount of goodwill.

There are 3 screens of this!
There are 3 screens of this!

Each one of these messages, not to mention emails, Facebook posts, comments on the blog, virtual hugs and thoughts of love and light, made a massive difference.  So please don’t ever feel helpless because if you’ve expressed yourself in this way, you’ve helped me more than you know.

On Monday I found myself clinging on tightly to a few thoughts in particular.  Jodie’s ‘no amount of loveliness’ sentiment as expressed on this post really helped keep my eye on the prize. As did the words of my big brother Simon, who told a story of how one day as a kid I was freaking out about homework and he calmed me down and urged me to see the bigger picture – he wanted to offer the same assurances now. Definitely helped. Felicity texted to say “love to you on your day of cure.” Amazing use of positive language which is continually proving to make a massive difference to this whole experience.

But the real pearler on Monday came from my best friend Faye, who had surgery recently and shared her reassuring experience that on the day, I could expect to feel calm and ready. She, too, thrashed about in the days prior, bargaining, feeling afraid and so on, but when it came to the crunch, ‘nature provided.’ She told me this while I was in the soup, so I struggled to believe her, but I was astonished to discover she was right.

Of course I had my moments. Telling Ted my Internet banking passwords. Expressing who I want to have an ongoing relationship with our kids. Walking through the patient-only area. Theo’s dazzling smile as the door slid shut. Removing my necklace and putting it in a sealed bag with my name label on it. Compression stockings on. Stripping down and donning the surgical gown. The paper shoes. The paper underpants. The waiting room where I was, once again, the youngest by a good few decades. My mental commentary was ‘Shit’s getting real.’ On a loop, louder and louder. But still I felt calm. Sad, but calm.

The porter, waiting with a wheelchair, gesturing for me to sit and me taking several seconds to grasp that’s what I had to do. Him pressing the down button of the elevator.  Small talk. Into the hands of the anaesthetist’s assistant. My friend Carol’s advice:

Get some Vaseline for your lips afterwards and get them to slather it on when you’re still not really with it – I remember wanting some on my lips so badly but couldn’t articulate it.

So I asked the assistant do you have Vaseline to counter dry lips? And he said “No, but just ask for an icy pole in post op – that’ll wet your whistle.”

I remember being marked up by the surgeon, and having a little cry with the anaesthetist. She encouraged it, observing there’s an emotional debt to pay and if sorrow gets suppressed, it rears up later, demanding payment with interest. Then the juxtaposition into small talk as the lines went in. “Mullumbimby! That’s a lovely part of the world.”

Carol had told me to revel in the pre-op, which Dr. Crilly had described as ‘An instant hit of half a bottle of champagne.’ Well she was right. Because when I have that much to drink these days I’m Captain Crashout.  I passed out cold.

Next thing I knew an unfamiliar voice said “It’s all over and you’ve done really well.”

“Icy pole… can I have an icy pole?” I croaked.

I did. And it was good.

A eulogy

They’ve distracted. Attracted. Seduced. Been exposed to a dozen or more Spanish summers. They’ve nurtured, been a pillow to babies and children and some grown men too. They’ve waxed and waned, heaved and sagged.

More recently during their trial for treason they’ve been squashed in a mammography machine, subjected to MRI, biopsied using a device like a stapler and pierced with six needles containing radioactive dye. Found guilty, their sentence saw them covered with dotted lines from a permanent marker – like a butcher’s poster.

And then they were cut off.

Next they will be spread under a microscope and pathologised.

Once, they were lovely things. So lovely and the source of so much joy. But as my friend and colleague Jodie observed:

no amount of loveliness you get from your breasts compares with what you’re going to gain by losing them.

What you can do

So I go under the knife on Monday and am feeling a surge of concern amongst loved ones. Hardly surprising given it’s a major – perhaps the major – event in the whole process.

Of course unless you live nearby, it’s hard to do anything practical. Here are some ideas of how you can genuinely help me.

1. Get screened If you’re a woman and are knocking on 40’s door, or know one who is, please get in touch with your local breast cancer charity to find out how to access an early screen. If you have cancer in your family GET SCREENED. Seriously, just do it.

I was complacent for a long time, and nearly didn’t go when I did. There’s a woman in my community, a friend of a friend, who’s 44 with two kids and her first screening detected stage 2 cancer. That could have been me. Don’t let it be you. Just…don’t.

2. Get loving The silver lining of this (and there have been a surprising number of them) is how it’s put me on the receiving end of a tsunami of love. It’s given people permission to express deep affection and concern and I am supremely grateful for this. In fact given my chances of survival are incredibly high, I even feel a bit guilty to receive it. It has been an emotional but very touching demonstration of just how brilliant people can be.

Ted and I are going to come out of this invincible, I swear. I love the shit out of him right about now. We have never made vows but are living the whole sickness and in health, for better or for worse thing. And the richer or poorer, thanks to Bupa’s inadequacies.

Having your health compromised does remind you that life is exceptionally precious, and if by sharing my pain you’ve been encouraged to tell me you love me, hug your kids more tightly, or squeeze your loved one more poignantly then I’m grateful and glad.

3. Get living A few years ago I read this incredible article and it was just the grease I needed to move my priorities around to the extent that if I were to die, I would not have any regrets. I’d be extremely ticked off, of course, and feel physically sick at the notion that my kids would have to swim through an ocean of sorrow as I did whilst growing up. But if my number was up, I wouldn’t think I wish I’d enjoyed my work more, or spent more time with those I love. Could do better on the keeping in touch with friends thing, admittedly, but that’s just as well otherwise the mercury may well bust out of the top of my smug-o-meter.

4. Get giving If thoughts are turning to flowers, or books or chocolates or gifts, I’d like to thank you but also to say please don’t! I’d much prefer a card or email and for you to take what you were going to spend on me and donate it to this charity, utilised by a local family whose six year old, who went to preschool with Amy, is currently undergoing chemo. I’m pretty sure they’d walk a million miles to swap places with me right now.

Finally, I’d be really glad if on Monday at midday AEST you could send me what my friend Jayne quite delightfully calls “love, light and all that shit.”