Breast cancer – Musings from the cold

Friday Feels Returns

Posted on November 22, 2024November 22, 2024 by Sharon

I missed last week’s Friday Feels post. The reason is one of the things that made me happy – read on to find out more.

Friday Feels is a (seemingly) regular blog post I started writing about three months ago. Debbie, my sister, writes the occasional Fridays Feels post and I thought I’d copy her lead.

There are three questions each week, mostly the same, and then an F-word. I think I’m supposed to write only brief responses to each question, but struggle to do that. Someone famous once apologised for writing a long letter “because they didn’t have time to write a short one”. Even though I could take the whole day to write a blog post, I try not to. Especially on days like today where it’s warm – 27C – and the pool is calling!

The three questions I answer each week are:

1. What made me happy this week?

2. What’s been challenging about the week?

3. What’s caught my attention on social media this week?

Rather than a F-word this week, I’ve decided to write about a C-word instead.

First, the questions.

Cancer – that’s a C-word. And it’s related to what made me happy this week. On Friday last week, rather than writing a blog post, I met with my medical oncologist for my FINAL oncology appointment. I’ve had annual check ups with my breast surgeon, my radio oncologist and my medical oncologist since 2019 and last Friday was the last appointment. Five years of low-down terror in the back of my mind … and now it’s all done. I have to admit to being much more emotional than I imagined, and spent some time in a quiet corner of a hospital corridor pulling myself together. But I’m happy that my appointments are done and that the five years is now officially over and closed off in my mind.
COVID – that’s a C-word and it’s related to what’s been challenging about this week. Tim didn’t feel too well last Friday and did a COVID test. Negative. Big relief. Saturday he felt even worse. Mid-afternoon I found him in bed shivering even though it was a really hot day. I took his temperature – 41.5C. That’s a bit warm. I had thought he didn’t want to do gardening with Chase and I, but apparently he was ill. Sunday he did a test. Positive. He tested positive as recently as yesterday. He’s slowly getting better. I’ve been working from home all week and because of the design of our house we’ve been able to keep away from each other and so he hasn’t passed it to me. But it’s been a big week.

Another reason it’s been a challenging week is because my uncle – Mum’s brother – passed away on Wednesday evening. He was a great storyteller and had a wealth of them to share – from years in the Navy to his more recent travels. He was also a great reader and that made discussions always interesting. He’d share books and recommend others and wasn’t shy about telling you why a book was unreadable! Wifedom, for instance, was not one of his favourites! Mum has lived around the corner from him for the last four years and minutes after she’d ring him to invite him round for morning tea, he’d be at the front door, zooming up the steep hill fearlessly on his mobility scooter. One thing we always chuckled about, was that even though they were both in their 80s, she’s still such a big sister! He was a well-read, well-travelled man, but oh golly … when his big sister said to do something, he’d do it! It seems that’s one thing that never changes in family relationships. You’ll be missed, Uncle Roy.
Characters – that’s a C-word. Have you heard of Paloma Diamond? I hadn’t either till just last week – possibly because I don’t have TikTok. But she popped up on my Instagram feed last week and she’s become a bit of regular for me now. The actor behind the character, Julian Sewell, has amassed a huge following – and I’m just jumping on board. Also, if you’re into period drama, check out his ‘Aunt Ingrid and Evelyn’ characters.

Screenshot from Julian Sewell’s Instagram account

Link to Julian Sewell’s Instagram, just in case you’re interested.

Well, that’s it from me for another week. I’m pretty pleased with myself for not mentioning the other C-word.

Christmas!

Apparently it’s only 30-something days away. Who’s getting excited?

Life, Writing

And just like that …

Posted on May 12, 2024May 12, 2024 by Sharon

End of December 2017 – we head to Europe for a cold Christmas. Paris, the UK for actual Christmas, back to Paris, then Venice for New Year, then Prague.

Beginning of January 2018 – we arrive home to the warmth of an Australian summer.

End of January 2018 – Dad passes away.

End of November 2018 – I discover a lump in my breast.

End of December 2018 – formal diagnosis. A trip to Tassie for Christmas with the kids and grandkids.

Beginning of January 2019 – a trip to Queensland for more family, then home for surgery.

February-March 2019 – radiotherapy treatment, confronting and strange.

April 2019 – the beginning of (endocrine) hormone treatment. A pill every day for five years. Regular check ups with my surgeon, medical oncologist, and radio oncologist. Confronting and anxiety inducing. I think I called it being discombobulated back then.

Early December 2019 – a trip to Singapore to attend a conference. My cough and difficulty breathing when I get home a concern but it cleared up after a time.

Late December 2019 – January 2020 – to Sydney for Christmas with Mum and friends. Bushfires. Smoke for air. Death and destruction. Hands being shaken that didn’t want to be. Exhaustion. Logging on to apps we didn’t know we needed, glued to social media. The fires closing in on my sister’s house, then turning away suddenly, not far from the front gate. Her watching on from the UK. Safe. Kind of.

March 2020 – COVID. The world shuts down.

Lockdown #1: Tuesday 31st March to Tuesday 12th May. A total of 43 days that seemed longer in the living of it.

Borders closed. Shortages of toilet paper, dried goods, patience. Working from home. Board games in the evenings. Lives lost, exhaustion, death and disease. Daily press conferences. Numbers, stats, people’s lives … and their deaths. Masks, homemade at first, then N95s. No handshakes. No flights. No gatherings. Dis-ease.

Blur.

Just get through it. Take the moments when you can. Zoom, photography, connection. Wear a mask. Wash your hands. Get tested.

We become ‘distancers‘ … uneasy, wary, but at least our hands are clean.

Melbourne’s Lockdown #2: 9th July to Tuesday 27th October. 111 days of boredom, coping, not coping; working from home, living in trackpants.

Blur on steroids.

Blurgh.

End of October 2020 – the measures are working. Cases reducing. Doughnut days are here (to stay?). Still masking, washing our hands, working from home. But no deaths, fewer new cases. Doughnut shops sell out by mid-morning.

A circle of hope for the weary and un-easy.

December 2020 – a trip to Tassie for Christmas, taking the moments when we can. Family, connection, a circle of hope for the weary.

February 2021 – no more doughnut days. Melbourne’s Lockdown #3: A short, sharp five days from February 13 to 17.

March 2021 … – check ups, anxiety inducing and painful, but necessary and reassuring when they’re done.

53 weeks of distancing, still working from home, still masking on the odd times we go out. The talk of a ‘COVID-normal’ world. No idea what that means.

Melbourne’s Lockdown #4: from May 28 to June 10. 14 days that feel like another lifetime.

June 2021 – Tim goes to the doctor who sends him to a specialist who sends him for tests.

The results come back. It wasn’t the news we wanted to hear.

July 2021 – Melbourne’s Lockdown #5: Friday 16th July to Tuesday 27th.

Tim’s surgery is scheduled right in the middle of those 12 gruelling days. Complications mean his 3-4 day stay in hospital stretches out over 13 gruelling days.

Breast surgeon check up for me. All clear.

August 2021 – Melbourne’s Lockdown #6: Thursday 5th August to Thursday 21st October. 77 soul-sucking days. Seems no end to it.

Tim starts chemo. Eight three-week cycles, with a week off in between each cycle.

Six-months of it.

Blurgh.

September 2021 – an earthquake, Victoria’s largest in 200 years, because … well, why not?

November 2021 – redundancy. Am I retired now? I sure am tired now.

December 2021 – regular mammogram, ultrasound, medical oncology check up. All clear.

February 2022 – Tim finishes chemo. An end to it.

April 2022 – car crash. No one was hurt … except the car.

Blurgh.

September 2022 – the College of Extraordinary Experience, Poland.

October 2022 – Germany, Belgium and the UK. Extraordinary.

December 2022 – regular mammogram, ultrasound, medical oncology check up. All clear.

2023 – retirement? Maybe.

February 2023 – U3A. It’s what retired people do. Photography group. Book club. New views, new ideas. Getting out. Is this normal? COVID normal or normal normal? Who can tell?

April 2023 – new job. Helping seniors with technology. Re-invigorated. Re-energised. Re-connected.

May 2023 – Multiple Births Association volunteer. Cuddling babies. Bliss.

July 2023 – change of direction, this time into real estate. Starts out well enough.

August 2023 – move out of the city into our own home.

December 2023 – regular mammogram, ultrasound, medical oncology check up. All clear.

March 2024 – yet another change of direction. A consultant now. Writing, editing, transcribing, interviewing.

May 2024 – today. May 12. Mothers Day as it turns out. My last day of pills. One pill every day for five years. Today’s will be the last.

And just like that …

Life

Two years on

Posted on March 21, 2021 by Sharon

On this day two years ago, I had my final radiotherapy treatment. I wrote about my final treatments and the effects on my body at that time, noting that it was “getting boring” and that I wasn’t going to write about it anymore.

That was true for then, but what I wasn’t to know then was that two years later there are still lingering after-effects. When writing about my experience of cancer, I was reluctant to call it a ‘journey’. It’s such a hackneyed phrase, but also one I didn’t want to think of as relevant to me. I didn’t want a cancer journey, I wanted it to be done/finished/over. I wanted to close the chapter on that short part of my life and move on.

But it isn’t over; the chapter isn’t closed. The journey, such as it is, continues.

Not in big, sweeping gestures or debilitating treatments but in subtle ways that slink in around the edges, catching me off-guard.

I drive to one of four annual check-ups (breast surgeon, medical oncologist, radio oncologist, mammogram/ultrasound) and fight the rising panic by calling my daughter Emma or my sister Debbie. Emma drove me to many of my treatments and then to work or to home afterwards and can visualise where I am and that familiarity adds to the comfort she provides. Debbie takes me through the 5-4-3-2-1 technique forcing my focus elsewhere, away from the panic.

I take a pill everyday to help ensure the cancer doesn’t return. I try my hardest to get the same brand each month, but if it’s unavailable and I have to take a different brand my joints begin to ache within a few days, my legs swell, I get dizzy, my vision worsens.

I mention it to my radio oncologist at my annual check-up in March. She says many of her patients have noted the same thing. I’m glad it’s not just me; I was beginning to think it was all in my mind. She examines me and is surprised by the amount of pain I experience at her touch. ‘Things often start to get better from the 2-year mark’ she tells me. I’m sure she told me that at the end of the first year too.

My mammogram and ultrasound results have been fine so far. I am doing well. There is no need to worry.

So they say.

And then I let myself think of this as a journey … I know the starting point, that moment when I felt the lump for the first time. The six weeks that felt like many more between then and getting a diagnosis. The surgery, the healing, the radiotherapy, the pills, the annual checks, the regular massages, the lingering, push-it-to-the-furtherest-corner-of-your-mind fear that pops out every now and then … if this is a journey, what’s the destination?

I think about that for a while and decide that wellness is the destination.

If this is a journey, I want it to be a hopeful one. One with a destination I can look forward to. One I don’t ever want to go on again, but one I can think back on and feel comfortable in how I lived it.

I don’t want to pretend it’s all sunshine and roses, but it’s also not a journey full of menace or foreboding.

It’s a journey to wellness.

I can live with that.

Life

Discombobulated

Posted on August 17, 2019August 17, 2019 by Sharon

tim-goedhart-vnpTRdmtQ30-unsplash — Photo by Tim Goedhart on Unsplash

Wednesday. 9:38pm. I arrive home from photography class and Tim is home.

I hadn’t seen him since Sunday night – he’d left for Sydney at 5:00am on Monday and being a bad wife I hadn’t woken up to say goodbye.

He says, not as soon as I walk in the door you must realise, ‘you have an appointment with your breast surgeon on Monday’.

Oh.

My hands start to pick at non-existent fluff on the couch and I feel my insides begin to wobble like a poorly set jelly.

Are you okay, Tim asks.

I am discombobulated, I reply.

I don’t know the dictionary definition of that word but it feels like it fits. Discomforted, uneasy, thrown for a loop (is that even an expression?), discomposed.

I’d obviously made the appointment some time ago, but had forgotten. And in the being reminded of it I felt discombobulated.

Is it a check-up, Tim asks.

Yep, I reply.

Yep. It’s a check up. But it’s also a reminder, one I obviously hadn’t prepared myself for, of cancer. Of having had breast cancer earlier this year. Of having had surgery and radiotherapy treatment, and of being horrified that this had happened to me.

Yes, my breast is still discoloured and there’s a bruise-like stain where the lump was removed, and under my arm is still numb, and my breast hurts when I walk, so yes, there’s the constant reminders. But I can/have disassociated them from having had cancer. They’re just part of life now.

But seeing the breast surgeon – the reminder of that – is different somehow.

It’s not over.

This cancer – and I really don’t want to call it a journey – but this cancer thing isn’t over. No, it’s more than that. The fear is there because it happened in the first place. And more than fear, there’s a horror that it happened at all.

The fear/horror lurks somewhere and I’m never sure when it’s going to make itself known.

Driving to photography class for the first class back after the break, it made itself known. I’d continued attending class all through my treatment and I hadn’t realised there was an association in my head/body/gut between class and treatment, but anxiety crept over me as I headed to class that first day back. I was stuck in traffic and couldn’t pull over to settle myself, so I called my sister instead. She provided a good distraction.

I couldn’t go to work on Thursday – couldn’t settle, the fear again making itself known as I thought about the appointment with the breast surgeon. Deb noticed I was home and called me. Was I okay?

Not really.

I called the surgeon’s office on Friday to ask if the appointment was real – although I didn’t ask that particular question – and I was assured it was.

I remain discombobulated.

Too many questions for me to feel anything else.

I’m sure all will be settled on Monday.

That’s my hope at least.

Life

It’s my birthday …

Posted on March 8, 2019 by Sharon

… and I’ll deadlift if I want to!

Here’s me in action at the gym this morning*.

I reckon Tom will make this heavier next time!

I don’t usually get this visually visible on my blog, but I saw a post by my cousin Jen this morning on Facebook where she told her friends that I was ‘awesome’. It made me stop and think why someone would say that about me. Seeing yourself through someone else’s eyes can be a useful exercise and I suddenly felt proud of myself for continuing with my personal training sessions while going through radiotherapy treatment. And so I asked Tom (my personal trainer) to take a photo of me this morning because I wanted a record of this.

Plus it’s an interesting looking contraption!

Apart from being my birthday, it’s also International Women’s Day today and as I celebrate I feel blessed to have so many awesome women in my life. They continually inspire me and support me and I know my life would be less rich without them.

*****

Thanks to Tom, my trainer, for taking the photos.

Just one note Tom. Josh gave me flowers on my birthday last year. Just sayin’ …

Life

A new daily routine

Posted on March 5, 2019 by Sharon

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.

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

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

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

Life

Two down, 17 to go

Posted on February 23, 2019March 5, 2019 by Sharon

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.

Life

A hiatus

Posted on February 16, 2019February 16, 2019 by Sharon

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.

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.

Life

The next phase

Posted on February 3, 2019February 3, 2019 by Sharon

I woke this morning to Tim getting ready for a bike ride. Did I want to go? No, not today thanks. After he left, my mind and body had a bit of a tussle: get up and go for a walk! No, I don’t have enough energy.

As I’m now listening to my body I got up and went for a walk. And it felt good. It was a lovely 22C, ahead of an expected top of 39C, the sky was blue, and the sun was warm on my shoulders. My feet led me up the hill of our street and then up the slightly steeper hill of Glenferrie Rd, which isn’t the way I would’ve gone if I’d given it any thought but my body was obviously ready for a little extra challenge.

It’s been almost three weeks since my surgery and my body is healing well. The swelling has gone down, with only one isolated spot still swollen but even that is reducing each day. The numb patch under my arm is still numb but that’s not likely to change apparently, and the itching has finally (thankfully) stopped. I’m back at the gym for my twice-weekly personal training sessions and this coming week I’ll re-introduce upper body work to my workouts. So no problems with my physical recovery.

And I was feeling good about that. Well, really, why wouldn’t I feel good? My body is recovering strength and soon I’ll be back into training for the runs I’m keen to do this year. I am, after all, a runner. So I’m feeling good physically.

Not so much emotionally it has to be said. My oncology appointments on Friday discombobulated me. They reminded me that surgery wasn’t the end of this particular life episode. I haven’t wanted this to be a big deal – I had a lump that needed to be removed, much like an appendix or gall bladder. It’s been removed and I’m recovered, as someone who’s had their appendix or gall bladder removed recovers and then goes back to their regular life.

At the moment though, it does feel like a big deal. Hopefully the bigness of the deal will decrease over time, but I’m trying to be honest here and sort through what I’m feeling and that’s like this is a big deal. Or at least a bigger deal than I wanted it to be.

Meeting my radio oncologist and my medical oncologist makes it clear that I can’t go back to my regular life – at least not just yet. If I’d had my appendix or gall bladder removed I wouldn’t have to worry about my appendix or gall bladder ever again; appendicitis isn’t ever going to pop up in another part of my body, or even in the same part. Mind you, I’ve not had my appendix out, so what would I know?

What I do know is that the analogy I’ve been using to help keep me grounded – that this is just like having my appendix out – isn’t working for me at the moment. And so the deal is somehow bigger.

Karen, my radio oncologist, is lovely. She has extensive notes about me but asks me to tell my story in my own words. I resist the urge to start with being born in Sydney, in March 19**, the second daughter of Noel and Sheila Pittaway ….

Karen is compassionate and patient, working through the information in a structured and rational way. She explains why I need treatment, what the treatment entails, how it’s delivered and possible side effects. There are possible side effects for the short term, the medium term and the long term. She draws diagrams to help explain the ‘how’ and answers our questions. We talk dates and it’s likely my four weeks of radio therapy will start on February 18 meaning I’ll be done by mid-March. I might get red, irritated and blistered skin, my breast might swell and change colour, and I might get tired. I might get all, some or none of these side effects. If I do get any of them it’ll most likely be in the final week or two of treatment and then continue for a week or two after treatment.

I sign the consent form and Karen says she’ll see me on February 11 for the planning consultation.

Lara, my medical oncologist, is just as lovely. She’s quiet and kind and works through the information in a rational and structured way. She explains why I need endocrine (hormone) therapy, what it entails (a pill every day for five years), possible side effects, and when I should start treatment (after radio therapy). The side effects are minimal: hot flashes, hair thinning, crankiness, and joint stiffness (which exercise can help alleviate). Lara gives me a prescription and says she’ll see me six weeks after I start the medication.

I know I’m in good hands but I’m still discombobulated. My analogy is ripping apart and the bigness of this particular deal is reasserting itself into my consciousness. I try not to let it, but all I want to do when we get home is to crawl into bed and pull the blankets over my head. I resist this urge, telling myself that it isn’t such a big deal: it’s four weeks of radio therapy then five years of taking a pill every day and that’s all. That’s it.

It isn’t a big deal.

I don’t/can’t/won’t believe it. It is a big deal.

I lie on the couch in my favourite PJs and Tim lays a blanket over me. It takes over two hours for my body to warm up. I eventually emerge from my cave but my ambivalence remains.

Is it a big deal? Should it be?

At the moment it is to me.

And in this situation there are no ‘shoulds’.

Life

Mind and body

Posted on January 24, 2019 by Sharon

Thursday 24 January 2019

Body and mind – mind and body. It’s a duality that’s been debated by philosophers and scientists for centuries. In many cultures the body and the mind are seen as separate entities … our bodies are public, perceptible by others whereas our minds are private and something we can choose to share. It allows for all kinds of beliefs and behaviours. I won’t go into the science or philosophy of it all, but our belief in this dualism impacts the way we live our lives. And that’s of interest to me, particularly at this point in time.

Today particularly I’ve felt in the centre of a battlefield with both my mind and my body fighting for the upper hand.

I have to admit to not having had a good day today. I stayed in bed till 5pm, only emerging because I felt sorry for Emma, who I’d left on her own all day. Enya soothed me through my headphones, and I alternatively read Richard Glover’s The land before avocado and dozed.

On Tuesday I’d had my stitches removed, and I’m not sure if it was the sticky stuff on the tape or something else, but my skin was so irritated and itchy it was driving me to distraction. The heat didn’t help and I was beyond irritated, irritating and irritable with the itchiness.

My surgeon had told me that this week would be tougher – more pain (yep), redness and swelling (yep and yep), fluid buildup (yep) and with a higher risk of infection (gosh I hope not).

I’d been doing more and more each day – walking further, staying awake longer, refusing pain killers before bed, even when I was groaning in pain. I even went to the gym yesterday – mostly to determine a plan for my return but I managed four and a half minutes on the exercise bike before my head started to spin.

My mind was insisting that my body recover as quickly as possible.

Source: https://weheartit.com/entry/66627527

But my body wasn’t having any of it. And so I felt caught in the middle. My mind was frustrated that I was still in pain, not back to normal, that I was sitting around having others bring me cups of tea and breakfast, lunch and dinner, and doing all the chores.

And then, early this morning I remembered what the physio and the breast care nurse had said:

Listen to your body.

My body was saying ‘stop. Just stop. I need a break’ and finally my mind listened.

I have to admit that I feel so much better for the rest. While the itchiness has subsided, the redness, swelling and pain hasn’t, but I feel I can cope so much better because I finally remembered to listen to my body.