Posted in Life, Photography

It’s not a headlight

I stopped listening to Enya some time ago, without making a conscious decision to do so. I guess I just didn’t need her anymore. Her music had seen me through a few challenging and difficult months, but I’m through them now and so no longer need the calming effect she had on me.

I woke up on Monday morning two weeks ago and immediately felt a different sort of energy in my body. It was a really interesting experience; I just knew that something had changed. My breast was still discoloured and peeling but the fatigue I’d been experiencing was gone. Just like that.

Then it was Easter and I had 10 days off work, travelled to Tumbarumba to visit family, then came home and faffed around home for the rest of the week. It was fabulous. Lots of time spent taking photos and deciding which ones to include in my developing portfolio; lots of time talking photography with Tim, discovering, then almost obsessively watching, Sean Tucker’s videos on YouTube; seeking out others’ work to draw inspiration from; doubting my own capacity as a photographer then coming across an image that causes me to catch my breath and think that maybe I am okay at this, then doubting myself again.

I went back to work on Monday and just about every colleague I ran into said how well I was looking. Many of them also commented on how fabulous my hair was looking, with one woman telling me I looked 400 years younger! All because I was wearing it down, rather than tied up to keep it off my face. There’s less grey when it’s down!

So spending time with Tim, my mother, sister,  brother, uncle, neice, nephew and great neice over Easter, spending time at home in the week after Easter, realising I don’t need to listen to Enya anymore, and being complimented on how good I’m looking has meant the last two weeks have been great.

Much, much greater though is the fact that I’m a grandmother again. Yes, grandson number 9 (aka Byron) is now 9 days old and I’m heading north at the end of the week to introduce myself to him. I’m feeling as excited as I did when my first grandson was born just over 20 years ago (and just in case you didn’t know me then, that’s VERY excited).

Tim and I had been talking just days before about how we have so many grandchildren, yet there are no double ups with birthdays. That is, until now. Byron was born on Tim’s birthday, making it an extra special day! At least I think that’s the way Tim’s viewing it.

The year so far has been difficult and challenging and confronting, but I feel like I’ve reached the end of the tunnel and I’m happy to announce that the light at the end of it isn’t the headlight of an oncoming train!

I’ve learnt to listen to my body, to rest when I needed to, to exercise when I can and not push myself too hard, to not be too bothered about what I eat, to give myself a break and know that if I didn’t get to something one day, I’d get to it another day. I’ve learnt to not feel guilty about taking the time I needed to get well, to let my body and mind recover from the trauma of surgery and treatment, and the fears and uncertainties that come with a cancer diagnosis.

And I’ve had reinforced for me how fortunate I am to be surrounded by incredibly generous family and friends who have done all they could to support me.

I am indeed blessed.

All I need to do now is sort out the pain in my chest caused by the scar tissue. Any ideas for how to do that?


Here are some of the photos I’ve been taking over the last few weeks … most of them are a long way out of my comfort zone, photographically speaking, but I’m enjoying the challenge.

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From Empire at Burnham Beeches
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Mmmm …
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Part of Melbourne Central I’d never seen before
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Nicki serving icecream
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Centre Place, Melbourne
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Saskia
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Honour Ave, Macedon

 

 

Posted in Life

A new daily routine

Arrive. Hand over your patient card with a smile. Fine thanks, you reply to the smiling friendly receptionist who asks, somewhat unnecessarily you think, how you are. You take a seat as directed and wait for your name to be called by one of the radiotherapists.

Through the glass sliding door into the change room. Dress/top off. Bra off. Gown on. Stuff clothes into the green bag.

Carry it into the treatment room and put it on the chair. Hi. Good thanks. Name, date of birth, address.

On to the hard cold bed of the machine. Whoops, forgot to take your arms out of the gown again. Off the bed. Arms out, clutching the gown around you as you try to retain some control over exposing your body to strangers. Give that up and climb back on the cold hard bed of the machine with the gown unwrapped underneath you.

Whoops, forgot to take your glasses off. Off the bed, drop glasses into the green bag while clutching at your gown to hold it up. Back onto the bed.

Goggles on. Arms above your head and hold the bar. Legs up as they put the red cushion beneath your knees. Feeling thankful to have been doing abdominal exercises with Tom lately.

Lying there unable to see what’s going on, listening to the numbers flying between the two radiotherapists, feeling them mark your body, the cold of the tracing making you feel more exposed. Lie heavy as we move you Sharon. Left arm lifted into position, left hip shifted, ribs moved.

The cube is taped to your stomach – although you only know it’s a cube because you’ve heard them mention it. You can’t see anything because of the goggles.

The bed goes up and up – to shoulder height. You can’t see it because of the goggles but you can feel it from the way they make their final adjustments.

Sleeves of the gown are draped over your breasts.

All good Sharon. We’re out now.

A pause and you lie there watching the white square in the goggles.

A voice over the intercom. When you’re ready, a slow breath in for a short one. The yellow bar floats into the blue box and turns green. And breathe normally.

Silence.

When you’re ready, another slow breath in for a short one.

In

Hold

Great. Breathe normally.

The machine whirs and clicks like a cicada, the bed jolts into position and you see your spine and ribs on the screen in the goggles. The word pug seems to be repeated down your spine and you wonder what that’s about.

Okay Sharon. When you’re ready, a slow breath in for a long one.

The yellow bar turns green and you concentrate on keeping it there, only barely aware of the machine’s high pitched squeal.

Holding

Holding

Wondering if you can hold any longer. The green bar wobbles, bounces up and down gently within the blue box, and you clench your jaw with the effort of holding your breath.

Just when you think you can’t hold anymore, ‘And breathe normally’.

You can tell you’re struggling to bring your breathing under control by the way the yellow bar bounces around. You breathe out, all the way out, and hold. Your breath swoops into your body and the yellow bar flies up the screen. Hold. Breathe out. Just as you get your breathing under control ‘when you’re ready Sharon, a slow breath in for a long one’.

The machine whirs and spins, or at least that’s what you imagine is happening from the noises you can hear. You can’t see anything because of the goggles.

Holding

Holding

The green bar wobbles. You concentrate hard to keep it there.

Holding

You want to close your eyes but you can’t because the green bar might turn yellow. You think about how good you are at breathing. You remind yourself of your years of practice. That makes you want to laugh and the green bar wobbles and you get the giggles and it wobbles some more. You clench your jaw even tighter but some giggles escape along with some breath. Luckily the blue box is just wide enough to contain it. You tell yourself this is no time for jokes but then your other self tells you that if now isn’t a time for jokes then when is? And you argue with yourself while the machine squeals its high pitched squeal and your arms tingle from holding the bar above your head and the green bar bounces gently and ‘breathe normally Sharon’.

The screen in the goggles turns back into a white square. You lower your arms gently because they’re really hurting now and remove the goggles. I’ll take those says the radiotherapist as he comes back into the room. He lowers the bed and you sit up, lifting your legs over the red knee cushions, clutching your gown around you as you stand, stuffing your arms into the sleeves and covering your body to counteract the feeling of exposure. A too-late gesture that nevertheless makes you feel somewhat in control.

You put your glasses back on, pick up your bag, yes see you tomorrow and smile as you head to the change room. You rub MooGoo udder cream into your left breast, dress, unlock the change room door, push the green button to open the sliding glass door, wave at the receptionist, go through one more glass sliding door into the hospital corridor, turn left and make your way to the car for the 32 minute drive to work in peak hour traffic.

Another one down. Only eleven to go.

Yellow … this time unconnected from my breath
Posted in Life

Two down, 17 to go

I cried in the shower this morning.

Not because I was hurting from falling over this morning playing scarecrows and face planting into the oval.

Not because my face hurts from my glasses bashing into my cheekbone during said face plant.

Not because my hands hurt from trying to stop my face plowing into the ground, or my hip or my knee.

I cried because I was dwelling on a couple of conversations I’ve had recently and the hurt they’ve caused me.

But I want to backtrack a little first.

On Thursday morning we made it to the oncology centre with minutes to spare before my first treatment. The traffic had been worse than we’d thought it was going to be at that time of the day.

I handed over my patient card to the receptionist who kindly acknowledged that it was my first time, then asked if I could move the time of my second treatment to later in the afternoon. That suited me better so I had no hesitation saying yes, that’s fine.

It wasn’t long before one of the radiotherapists called my name, took me on a tour of the, admittedly not huge, facility. Here’s the change room, there’s the loo, here’s the control room, and here’s the room you’ll be in to have treatment. There were red lines from the lasers all over the walls. I changed, put the blue gown on, put my clothes in the green bag that I was to bring to each treatment (along with the gown), and went back into the room with the big machine in it.

I lay on the bed, took off my glasses, put on the goggles, put my arms above my head and held onto the handlebars and then was instructed to ‘lie heavy. I need to move your arm, but let me do it’ said the radio therapist. My arm in position, my hip moved slightly to the right, numbers and positions flying between the two radio therapists, more marks on my body, a cube to measure my breathing taped to my stomach, the sleeves of the gown crossed over my breasts and it was time to start.

They left the room and I was instructed to take a long slow breath in, hold it for a moment, then out again. On the screen in my goggles appeared an x-ray of my spine and ribs. I wish I knew how to read it so I could assure myself that all was in order.

The x-ray disappeared and the yellow line and blue box reappeared. Take a long slow breath in for me Sharon and hold it. It’ll be a long one this time.

I moved the yellow line into the blue box, turning the line green, then concentrated really hard to keep it there for what felt like a really (really) long time.

And breathe normally again Sharon.

The line became yellow again as I exhaled, then ‘one more long slow deep breath Sharon and hold’.

I began to feel a little panicky the second time. It felt quite claustrophobic to be honest. What if I couldn’t hold my breath for as long as I was required to? The now green line bobbed up and down slightly as I concentrated on holding the green line within the box.

And breathe normally again Sharon. That’s it, we’re all done.

Goggles off, arms down, off the table, shoes on, glasses on, head off to the change room. The radio therapists’ friendly ‘see you tomorrow Sharon’ stopped me as I went through the curtain. Oh yes, I’ll be doing this again tomorrow … and for another 17 weekdays after that. It feels different knowing that it’s not a once off scan. This is real. This is really happening.

Friday … second treatment. Any questions? What happens if I can’t hold my breath for as long as I need to? That’s okay. The machine is clever enough to turn off and then we just pick it up where we left off when you’re ready.

Knowing that certainly eased my mind.

See you on Monday!

*****

And now back to the real issue for me this morning: at least you’re not dying. At least you’re assured of a good outcome. At least you’re not 70 and having to hold your breath for that long. At least you don’t have to drive 200kms each day to have treatment.

I have a suggestion, perhaps even some advice.

If you have a friend or relative who’s going through cancer treatment, comparing their experience to your aunt’s cousin’s brother-in-law’s mother and starting a sentence with ‘at least’ negates the fact that your friend is going through an experience of their own. And while it might not be ‘as bad’ as someone else they know who’s going through cancer treatment, or has already gone through cancer treatment, they’re still experiencing something.

They’re still dealing with emotions and what ifs and potential side effects and uncertainty and not knowing and I know uncertainty is similar to not knowing but it’s kind of different too.

Don’t compare.

Don’t start a sentence with ‘at least …’.

Don’t tell them stories about their best friend who’s just died age 30 from bowel cancer.

Don’t tell them they’re lucky.

Don’t make out that their experience is any less than someone else’s.

It’s hurtful …

So much so that I cried in the shower this morning.

A burst of orange to cheer me up

 

 

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