Posted in Life

A hiatus

Finally, life is back to normal.

I’m driving again, I’m back at work (and actually doing work), back at the gym (even doing some upper body work and this morning I ran almost 2kms as part of walk club), and I’m attending a photography course two nights a week plus doing the requisite homework for it.

My scars are healing well – one of them is virtually invisible (and in a spot that no one besides me would look anyway) and the other one is still a little red but otherwise fine.

It’s been four and a half weeks since my surgery, I’ve been to the final post-surgery checkup with the breast surgeon and she’s happy with my progress.

It feels like normal life and that feels good.

Except … I now have a schedule of radiotherapy treatments covering some of the fridge poetry I composed last weekend. Beautiful poems of tenderness and fragility.

Okay, I lie. The poems are words flung together with barely any thought and consequently are absurdly nonsensical.

Absurd nonsense on the fridge

You can only imagine how horrid the ones being covered are!

But the covering – the sheet of paper obscuring the absurdity of my fridge poetry – reminds me that life is not yet back to real normal.

I’m living in a hiatus. And I like it.

I can pretend that this particular episode is over and normal life has resumed … apart from the times I venture to the fridge, and when I have other appointments. Like the one on Tuesday last week.

I received the schedule on Tuesday last week when I went for my radiotherapy consultation. It started with a meeting with the finance person who gave me a patient card and explained what I needed to do with it, a parking permit allowing me to park on the hospital grounds for free during my treatment, and a hefty document explaining how the treatment will be financed.

I was startled to hear that it’s amazingly expensive – $24,000 to be precise although there might have been a few cents added in just to make it look like that wasn’t a number plucked out of midair. Thankfully we live in Australia and Medicare pays most of it. The out of pocket expense is a lot less, but still a substantial amount of money. I signed the forms and then was introduced to Katrina, one of the radio therapists. Until that particular moment in time I had never realised that was an actual job title.

Katrina led us to a part of the hospital we hadn’t visited before – I don’t think there are too many of them left – then into a cubicle where I had to take my clothes off – from the waist up – and put on a gown (opening at the front please). I put my clothes into one of the blue patient bags, handed it to Tim and followed Katrina into a room with a big machine in it. I lay down, put my arms above my head and held the handle bars as instructed, I was wriggled into position, then drawn on, wriggled into a slightly different position, lowered, moved backward then forward, raised, had some sort of cube taped to my stomach,  drawn on some more … I have to admit to feeling like one of the drawings on Mr Squiggle.

I put on the goggles as instructed, then watched as the yellow bar raised and lowered as I breathed. When I took a particularly deep breath the yellow bar went into the blue box at the top and turned green. I practised breathing and holding the green bar in the blue box (holding my breath), as instructed, then breathed normally. Okay, we’re going to start the first scan now, says a disembodied voice close to my right ear. Breathe normally.

I breathed normally watching the yellow bar float up and down, my arms starting to tingle from being held above my head for so long. The screen in the goggles went to a white square and static-like lines criss-crossed it.

Silence.

I lay still.

We’re going to have to stop there, said the voice.

Apparently, the CT scanner had stopped working. They turned it off and back on again but then engineers were mentioned and I wondered if I could put my arms down. When it was decided that getting it going again would take quite some time, I was able to put my arms down, remove the goggles, but before I could get up they did a tracing of all the drawings they’d done on me. When I say ‘drawings’ I really just mean crosses. The tracing is in case the crosses wear/wash off between now and my treatment.

Can you come back in on Thursday morning so we can do the full scan? Sure.

The crosses had washed off by Thursday so the tracing proved its worth. Less wriggling, fewer drawings, scanner at full power the whole time, yellow bar turning green as it moved into the blue box, breathe normally again thanks Sharon. Apparently I’m very good at the breathing! Years of experience, I tell them.

There’s a blood vessel at the bottom of the heart that falls in the zone of the radiotherapy treatment, as does the bottom of the lung, so holding my breath means the blood vessel and lung are lifted out of the way. It’s a simple yet clever innovation in treatment which not every radiotherapy clinic offers.

Second scan complete, I pick up the new schedule, drive home and put it on the fridge, a reminder that it’s not quite over.

Because of the delay in doing the scan, my treatment will now start on Thursday 21 February at 8am. That’s the day I’m running a new staff induction day at work. The induction day is sure to take my mind off the beginning of treatment and plunge me back into work reality – at least that’s my hope.

I don’t really know what’s in store for me as I go through treatment, but I’ll find out soon enough.

In the meantime I’m enjoying the hiatus.

Photo by me

 

 

Posted in Life

An update

Monday 14 January 2019

The alarm goes off at 6am and I haul myself out of bed knowing this will be my last gym session for a while. Deb walks down to the gym with me and heads off for a half hour walk while I walk up the stairs to the studiomy glutes still hurting from Friday’s session. I hope Tom will go a bit easy on me this morning. 

He doesn’t! The single leg presses that caused my muscles to complain vociferously over the weekend were on today’s agenda as were the bench presses that caused me to know my chest muscles had been working too. Tom says the muscle ache will be a good distraction from other aches I might have after my surgery. After the stretches, we high five as usual then he gives me a hug and assures me I’ll be fine.

This afternoon I’m due to have a procedure before my surgery tomorrow – and I have to admit to not looking forward to it. We need a distraction, so head into the NGV to wander through the Escher x nendo Between Two Worlds exhibition. It’s a fabulous way to spend a few hours and provides all the distraction we need.

The procedure I have is to prepare for a sentinel node biopsy. Radioactive material is injected into my chest – it stings and then goes on hurting for a while – and after some time to allow the radioactive material to travel around a bit, a gamma camera helps identify the lymph nodes the radioactive material has travelled to. It’s so the surgeon knows which lymph nodes to remove and means she can remove fewer than if I don’t have this procedure.

It’s over in about 40 minutes and we head home to prepare for tomorrow. Not that there’s really much preparation I need to do but there’s a bag to pack, some functional fashion to talk with Deb, conversations to have with the kids, and an unexpected though completely lovely visit from my oldest friend Michelle and her daughter Grace who’d road-tripped from Sydney to be able to pop in to see me.

I sleep well, considering.

Tuesday 15 January

Tim and I arrive at the hospital at 7:20 and make our way to DOSA (Day of Surgery Admissions) on Level 2. I complete the bits of paperwork still outstanding, pay the excess fee, tie a name tag onto my bag and am invited to take a seat in the waiting area. It’s already filling up – mostly women, mostly older than me, mostly with female companions, mostly looking as though they’re trying hard to keep calm.

My name is called and Tim and I follow Wendy into the next waiting area. Wendy propels me into a cubicle, lays out knickers (the comfiest ones I’ve ever worn), socks (orange with non-slip dots), a gown (the opening at the back please), a dressing gown and a large brown paper bag to put my own clothes and shoes into. I change and Wendy puts my bag into a locker indicating there’ll be a bit more of a wait. A young pharmacist comes to ask about my medications and I feel a bit out of place as all the others waiting for surgery are handing over boxes and boxes of medications and I have none to mention, apart from Vitamin D says Tim, three each day (I am very deficient!).

Wendy returns and we follow her into an office where I mostly answer ‘no’ to her questions: diabetes? blood pressure? heart problems? stroke? liver disease? on and on …

She rolls white compression tights up my legs to my knees, wraps some tape around my wedding ring, puts a name tag on my glasses and assures me it won’t be too much longer. We head back to the waiting area and before too long Maria calls my name, suggests a visit to the loo, then leads us to a bed in a curtained cubicle.

Maria wraps stiff white ‘sequentials’ around my legs and hooks them up to a machine. They fill with air and massage my legs – one leg at a time – helping to prevent DVT. She also puts a bear hug blanket on me and hooks up the machine so it blows warm air over me. It’s good for keeping veins open and so is useful for surgery. She puts a white hat on me – the type worn in the food industry – and my outfit is complete.

Orange socks and sequentials …

I am calm, my hands crossed loosely over my tummy. Jenny, the anaesthetist’s assistant introduces herself to us, and goes through some more information, asking if I’ve eaten or drunk anything since midnight (no, but I could go a cup of tea right about now). She doesn’t offer one, just unplugs the warm air blower, tells Tim it’s time to kiss me goodbye and wheels me down white corridors until we come to a waiting room outside the operating theatre.

We chat for a while, the cold starting to creep through the blankets piled on me, and eventually Jenny heads into the theatre leaving me alone for the first time. I hear someone call out to Sage and her name is called so often I imagine they’re having trouble waking her, or that she’s waking up in a way that is not ideal. I decide I don’t want to be here.

The surgeon’s assistant comes in and introduces herself to me – the only one of the team not named Penny or Jenny – and then Jenny, the surgeon, comes in to make sure I’m clear about what’s happening. She draws on my breast, just to make sure she has the right one, and tells me it won’t be too long now. After she leaves, I suppress the urge to jump off the table and slink away. I slow my breathing and try to quiet my mind.

Finally, Penny, the anaesthetist, comes in, asks about my previous history of general anaesthetic (once, 30-something years ago), and proceeds to find a vein on the back of my right hand. The cannula goes in easily and relatively painlessly, and I’m wheeled into the operating theatre. I decide I don’t need to see what it looks like, so keep my eyes closed. I’m instructed to shimmy over to the other bed, and manage to do that while keeping my eyes mostly shut.

As I lie there I begin to shake – a combination of cold and nerves. Again, I try to slow my breathing and quieten my mind but it’s getting more and more difficult. I just want to go home.

Assistant Jenny places a mask over my mouth and nose while Penny floods my vein with something. They keep talking to me, telling me they’ll take good care of me, that it’ll be fine and I lie there thinking ‘it’s not working. I’m still awake. Please don’t start yet. I can still hear you.’

Someone gently calls my name and asks me to open my eyes so she knows I’m awake. I flutter them open, then close them again, wanting to go back to sleep. Do you have any pain? Yes, I manage, not sure if I say yes or just nod. I am heavy with sleep and lie still, wanting desperately to return to sleep. Any pain? Yes. I doze some more. Any pain? Yes. Out of 10? Eight. I swallow the pill they give me.

Time whirls past and the weight of sleep slowly eases. I am wheeled to a ward where Tim and Deb are waiting for me.

Observations are all good

I admit to not remembering much of the afternoon although I do remember Alison’s visit. She perches on the edge of the bed and makes inappropriate conversation, lightening the mood.

Nurse Charlene comes in to administer IV antibiotics. It’s more painful than anything else I’ve experienced over the last few days. Painful isn’t really the right word. Excruciating is more like it. At midnight another nurse comes in to administer the next dose. The cannula is blocked and flushing it is not a pleasant experience. Liquid runs over my hand and I’m not convinced the antibiotic makes it into my vein. She re-bandages it, and leaves me to go back to sleep.

Wednesday 16 January 

Obs. All good.

Breakfast. A bowl of porridge.

Jenny, the surgeon, checks on me and inspects my bandages. All good. Sutures will come out next Tuesday.

Nurse Charlene is back to administer the final dose of IV antibiotics. I cannot handle the pain of the flushing and she says she’ll have to move the cannula to be able to administer the antibiotic. My face screws up with the pain, and she hurries out to find the doctor. Minutes later she’s back and removes the cannula. Apparently, I don’t need the final dose.

Bronwyn, the breast care nurse, pops in to give me some information and a cushion – an important item for my recovery.

Sarah, the physio, provides me with an exercise schedule and stresses the importance of listening to my body over the next few weeks.

Tim has arrived so there’s nothing else for it but to get dressed and go home.

All that’s left to deal with this week is recovering from surgery. That’s easy with the amount of support I have. What’s tough is ensuring I go easy on myself and not rush too quickly to doing things.

Thanks for all the good wishes and messages of support. It means a lot!

Posted in Learning, Life

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There is so much we can control in our lives; so much more we seek to control; and then there are things we simply have no control over.

It rains for days on end, rivers rise, towns are flooded, 300 cows are washed into the ocean.

A low pressure system gets lower, the wind increases, a hurricane/typhoon/cyclone strips trees of their bananas, houses of their roofs, power lines of their energy-carrying capacity.

A volcano spews lava down its mountainside causing mayhem to those at the foot of the mountain and those on flight paths above it.

We are reminded that there are some things we still cannot control; some things are bigger than us, they are beyond us: we are not as powerful as we thought we were. We don’t have dominion over the earth and all that lives on it.

As with the planet, so too with our bodies.

I have been raised to believe that I am in control of my body, in the same way that as thinking, intelligent, problem-solving people we think we are in control of the earth. Mind over matter. If you think you’re going to get sick, you will. To avoid getting sick, you just have to resist it; you have to be strong in mind and not give in to it.

I haven’t vomited in more than 30 years because I refuse to do so.

When I feel the first tinglings of a cold, I simply tell myself that I do not get sick, and most of the time that’s enough. I do not get sick. I do not give in to sickness.

When I feel pain in my body, I remind myself that my mind is stronger, and the pain dissipates.

Sickness is a weakness of the mind. Both of my parents hold firm to this view, and it has become part of the fabric of my being. (I have written about this attitude here.)

I felt this way until Tuesday 25th October at 3:34pm.

It was at that point that I came out of a meeting with Phil and Jo (two new colleagues) and noticed that I was shaking slightly. I felt a bit cold. I went back to my desk and for the next 47 minutes wrote an abstract for an article on workforce planning for beginning teachers. My fingers skittered across the keyboard in often uncontrollable ways, the shaking intensifying the longer I sat there. I tried deep breathing as a way of calming myself, in case the meeting had somehow agitated or excited me; I walked quickly to the toilet and back as a way of warming myself, in case it was the sitting that was making me cold. I didn’t think about getting/being sick … I was just cold. And shaking uncontrollably. And feeling slightly off my game.

One hour and forty seven minutes later I was in hospital. Admitted straight into emergency, even though the woman in the queue ahead of me had been told that she would be waiting at least an hour to be seen by a doctor.

I stayed in hospital for a week.

In that week, I had no control over what my body did, or of what was happening in my body. I couldn’t think my way out of my sickness. My mind and my body were two separate entities: one did not control the other.

Or rather, my mind did not control my body.

I lay in my hospital bed for a week and my mind was quiet (I am toying with using the word ‘blank’): it is usually busy narrating my life, having conversations with a host of others, skipping from thought to thought, involved in a rich array of experiences, ideas, images, connections. My inner life is integral to who I am and while I am quiet on the outside, on the inside my mind is loud and always on.

I realised, though, on my sixth day in hospital, that my mind hadn’t been on for the previous six days. I lay in my hospital bed under six blankets, sheet up to my chin, neatly tucked in, eyes shut against the light, and my mind was quiet. Nothing. No thoughts, no conversations, no ideas … quiet. I’d sleep (a lot) and when I was awake my mind was quiet.

My mind seemed to know that it had to be quiet so that my body could recover. It seemed, for the first time that I can remember, that my body was in charge, rather than me being in charge of it.

I am home from hospital now, and my mind has switched back on. But it’s now more willing to listen to my body. I lie here, in my own bed, with the blankets piled high, neatly tucked in, watching the clouds flit across the sky, and drift off to sleep, my mind on but quiet enough to allow my body to recover.

I am thankful that I am generally healthy: I had no list of medications to give to the doctors, no bouts of ill-health to share, certainly nothing like the 40 heart attacks and plethora of other ailments the woman in the next bed talked of. Even so, I was not in control. Something was happening to me, and I was unable to stop it.

On day 7, the day of my release from hospital, I thought about my/our lack of control. I had just as much control over the bugs wreaking havoc in my bloodstream, as we collectively do of controlling the force of the wind, the amount of rain that falls, or the size of the wave after an earthquake. We are reminded that there are some things we still cannot control; some things are bigger than us, they are beyond us: we are not as powerful as we thought we were.

It’s an unsettling thought, but allowing it is not a sign of weakness.