Posted in Life

Un/scrambled

You  might think this is a post about eggs.

It isn’t.

It’s a post about ideas … or maybe not ideas so much as thoughts.

Or threads, but not of the clothes variety.

As an introvert I have a very quiet outer world – I’m not the ‘greeter’ – you know the one, the person who exuberantly says hello to everyone in the office each morning, or the one who bounces up to each person at a party to welcome them even if they aren’t the host.

I’m going out on a limb there you realise. I’m such an introvert that I don’t go to parties – apart from the one I’m going to today. But that’s different because that’s my eldest granddaughter’s birthday party and the only other people there will be my children and grandchildren. Maybe an odd friend or extended family member as well, but ostensibly a family party.

Family parties, when everyone there is an introvert, are interesting, particularly when there’s so much family.

Only three of my five children will be there, but between the three of them they have 10 children, plus four steps. It makes for a lot of people – who, yes, are all related, but who have more conversations going on in their heads than from their mouths.

I’m making it sound as though we stand aroung not talking, and that’s not the case at all. We talk non-stop. We’re just all so worn out at the end of it from talking so much that we need alone time to recharge.

But I digress.

Scrambled.

Thoughts.

Threads.

My sister wrote a comment on my previous blog post along the lines of ‘you have so many ideas’ and she also wrote, in her own blog, ‘I might look like I’m doing nothing, but in my head I’m very busy!’

I completly resonate with that sentiment – it’s a hallmark of an introvert – the quiet on the outside but busy on the inside thing.

And that called to mind this image I saw on social media a while ago. 

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I love those opportunities to have deep conversation with someone in which the scramble of thoughts/threads gets unscrambled.

I usually pay for those conversations, but that’s okay because the person I’m paying knows how to take the tangle and unravel it a little. Or maybe it’s because they listen so that I do the untangling myself, just by getting the threads out of my head and therefore out of the ravel.

[If you can unravel something, does that mean you can ravel it?]

When my students didn’t know where to begin in writing a university assignment, I’d tell them to just start, to put something down on the page and keep tugging gently at the idea/thought/thread through writing, so that eventually there are lots of ideas on the page and you can re-arrange them as required, throw some out, develop some further, add new ones, so that eventually you have a piece of writing that is as clear and unscrambled as you’d want a university assignment to be.

[Unlike that paragraph, which had too many ‘so that eventuallys’ in it. I could edit it but I like the forceful movement forward it implies.]

Deb’s right. I do have lots of ideas/thoughts and I’m getting much better at recognising when they’re in a tangle and knowing how I might go about untangling them.

I talk.

It’s exhausting. But ultimately far less exhausting than having the thoughts continually scrambling around my mind.

If you want some clarity – talk to someone trained to listen.

An unscrambled mind is so much less exhausting and far less heavy to carry around.

 

Posted in Learning, Life

Confluence

I click on the ‘add new post’ button and a blank page opens, with the blinking cursor sitting in the ‘Title’ box.

The word ‘confluence’ pops into my mind, so I type it in, then quickly check the dictionary definition to make sure it’s the right word for what I want to say.

A title is important. It helps synthesise our ideas in a way that suggests there’s a core idea the author wants to communicate and the author knows, at the start of the writing process, what that idea is.

Sometimes when I start writing a blog post I have no idea of the core idea I want to communicate, and so I leave the title blank. The act of writing helps distill my idea and it’s at that point a title emerges.

But not this time. In this moment, as I sit writing, I know the core idea I want to communicate and so the title is easy. Plus, I’ve been thinking about this for over a week now and that thinking has acted as a distillery.

Over a week ago I saw this on my Facebook feed.

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I remember being struck by the sentiment because we mostly hear ‘you only live once’ as an exhortation to make the most of things.

I’m currently, with lots of support from others, developing an ethics unit and am constantly on the lookout for case studies, resources, stories of ethical misconduct in the financial services sector (which is not hard to find at the moment), but when you search online for something, you enter into a rabbit warren of ideas and perspectives and views and things the internet believes you might be interested in.

One of those things was an interview Charles Wooley did earlier this year for 60 Minutes. I don’t ever watch 60 Minutes, but on this occasion, when the video was in my ‘Up next’ menu in YouTube,  I decided to watch it because I was interested in who Charles Wooley was interviewing: Ricky Gervais.

The interview opened with them both walking through a cemetery and at one point, Gervais says something like, “you don’t exist for billions of years, and then for 70 or 80 years you do, and then you don’t”.

It’s a cosmic view of life – a long-range look – one that perhaps brings a different perspective to our lives.

And as I sat thinking about his comment, Carl Sagan’s video ‘Pale Blue Dot’ sprang into my mind.

Consider that dot … on it everyone you love, everyone you know, everyone you ever heard of, every human being who ever was, lived out their lives … on a mote of dust suspended in a sunbeam. ~ Carl Sagan

I could feel the confluence starting – ideas beginning to merge.

The idea that we don’t only live once, we live every day of our lives.

The idea that we’re here for such a small part of all time.

The idea that we’re all together, on this one tiny planet.

How am I living each day? How am I making the most of the opportunities my being here allows? How am I caring for others and for the only planet we can currently call home?

I don’t have answers; I rarely do.

But the questions are a starting point.

A confluence has to start somewhere and it may as well be here, as I sit, musing from the cold.

Posted in Learning, Life

A no-touch zone

I finished the workshop (I’d like to say to wild applause but that would be an inaccurate representation. It was ‘polite’ rather than ‘wild’ but I’ll take polite any day), packed up my things, and could see that one of the participants wanted to speak with me.

We stepped out of the seminar room, and he spoke to me about his Plan B for teaching in the upcoming trimester. I assured him that ‘talking more’ was not necessarily the best Plan B for an unresponsive class. Allow the silence to linger I said, and then our silence lingered as he physically squirmed at the idea of allowing silence to pervade the classroom.

It’s interesting, isn’t it, that many teachers don’t like the silence. They ask a question, seem to expect an immediate response from students, and if isn’t forthcoming they jump in to provide one.

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Photo by Shubham Sharan on Unsplash

This particular workshop participant is going to be teaching into the unit I’ve just been appointed Unit Chair of. A unit of around 700 students, 100 of whom will be online. I have warned the tutors that the teaching will possibly be different from what they’re used to, but I’m not sure how ready they are for how different it’s really going to be.

I’m also not sure of how ready I am for the challenge of convincing these tutors that teaching differently is a worthwhile endeavour.

They’ll be pushed, I’ve been reliably informed by a number of reliable sources, that they’ll feel out of their comfort zone.

I know something about being out of a comfort zone.

In the last month I’ve had two men push me further out of my comfort zone than I’ve been pushed in some time.

Both men put their hands on me.

Neither of them are my husband, my personal trainer or my physiotherapist or my doctor or anything to do with my health and wellbeing.

It’s okay for Tim, my husband, to put his hands on me because … well, because he’s my husband.

It’s okay for Tom, my personal trainer, to put his hands on me because he helps ensure my shoulders are in the right position for whatever exercise I’m doing.

It’s okay for Rob, my physiotherapist to do some manipulations of my shoulder or neck or knee or whatever body part is currently undergoing some issue that needs manipulation of some sort.

I don’t have any males on my medical/oncology team, so that’s not something I have to deal with.

In the last month though, two men, both alike in age and in not formerly knowing me in any way at all, felt it was okay to put their hands on me.

Now, I seem to be suggesting that they touched me inappropriately. If by ‘inappropriately’ we mean sexually, then that’s not what I mean at all.

There was no sexually inappropriate touching. Nor, I hasten to add, was there any sexually appropriate touching because I don’t know that there is such a thing between work colleagues.

From the outside, it could be seen as benign. One patted me on the shoulder a number of times, the other hugged me from the side.

Man A walked into my office for our second meeting and told me I had a lovely smile. He even told me that he’d thought that when he saw my profile photo (you know the one that shows up when you send or receive an email from a colleague?).

It might have looked benign, but it felt yukky. I didn’t ask either of them to touch me, I didn’t give any signals that touching me was okay, I didn’t touch them.

Did I invite their touch? Did I somehow give a signal that it was okay?

Is it okay to touch a colleague you’ve just met? To pat them, tell them they have a lovely smile, hug them?

Is it?

It might be for some people, but my body is a no-touch zone.

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Photo by Cristian Newman on Unsplash

I’m not for one moment suggesting they were doing something sordid or out of line.

Except it crossed a line for me.

I’m conflicted about this.

They were two well-meaning men who show their gratitude or appreciation in small, physical ways. They are exuberant characters and this sort of touching, much like a handshake, is part of who they are.

But it isn’t like a handshake, is it?

A handshake seems to be more equal somehow. If Man A had shaken my hand as an expression of his appreciation for the support I’d provided (for doing my job, basically), would I have felt/thought differently about it?

Yes, I believe I would. It would have seemed to have given a different message. A shoulder pat while saying ‘you’ve done a great job’ seems a bit off. I felt like I haven’t felt in a long while, and that’s like ‘the little woman’.

It brought to mind an incident that happened many years ago. I was at a dairy industry dinner (in the time I was married to Kim who worked in the dairy industry) and the man sitting next to me asked me in that horribly patronising tone some men spoke to women in those days: ‘And how much did you spend today Sharon?’

You see, while the men had been discussing important dairy industry things at a conference, the women (the wives) had been encouraged to spend the day shopping, or whatever wives did in those days. I hadn’t spent my time with any of the other wives, and I certainly hadn’t spent my day shopping. We had four young children and only one wage and shopping wasn’t something I did a lot of (apart, of course, from food shopping and I certainly wasn’t going to do that while I was away from the children for a day or two).

I had, on that day, actually made about 50c. Someone who had parked behind me asked if I had change for the parking meter. I did and so he gave me one dollar (it may even have been a note) while I handed over my 50 cents in a mix of coins so that he could feed his meter. I could have just given him the 50 cents, but he insisted on giving me a dollar.

I told my somewhat underwhelming story, while thinking ‘condescending pig’ (which I may have thought a bit too loudly), and my dinner companion soon found someone else to talk to.

But I had thought that between 1987 and now things had changed; that women weren’t ‘the little woman’ any longer. Yet that’s exactly how I felt.

And, quite frankly, I don’t need a man hugging me, even if that is from the side, and telling me how much he’d enjoyed the seminar.

Actually, tell me you enjoyed the seminar, but keep your hands to yourself while doing so.

My body is a no-touch zone!

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

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

 

 

Posted in Life

The next phase

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’.

Photographing flowers is good therapy

 

 

Posted in Life

Mind and body

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.

My mind finally believed!

 

Posted in Family, Life

Blessed

We’re home now from two weeks of family, warmth, generosity, laughs, fun, connections, looking out for, talking, playing, keeping calm, being distracted, trying not to worry.

I feel blessed that we could spend a week in Tasmania and then a week in NSW/Queensland, popping home to Melbourne for a few hours in between to repack our bags, process some photos, and orient ourselves to the next phase of our adventure.

Our week in Tasmania was a week of blue sky, clean air, far horizons, wide open spaces and golden light at the end of each day.

Gold at the end of the day

It was Christmas Day on Boxing Day, giving and receiving, unwrapping and gratitude, watching out for leeches in the lawn, totem tennis and bocce with the littlies, small motorbikes for the bigger kids, and bigger bikes for the biggest ones. It was going to bed early, sleeping late, following the sun around Ben’s kitchen table in the mornings, and eating endless Christmas leftovers. 

It was babysitting so my eldest daughter and her husband could celebrate their wedding anniversary without children, babysitting so my eldest son and his partner had a chance to spend some time together cheering on the Perth Scorchers, taking two of my grandsons to visit my youngest daughter and her husband and seeing the various cousins playing happily together, spending time with my second son and his wife who are preparing to welcome my youngest grandson (their first child) into the world, and celebrating another grandson’s fifth birthday.

Playing happily

It was photos, candid and not so, silly and even more so, fingers behind heads, other fingers being held under control, waving and not waving, looking and not looking, jumping and running and in the frame and not in the frame. It was chaos and patience. It was herding cats. 

Me and eight of my grandchildren!

It was a trip from Melbourne to Devonport on the Spirit of Tasmania on Christmas Eve and an even calmer return trip on New Year’s Eve with Sakye, our eight year old granddaughter in tow.

We were blessed to take Sakye to Murwillumbah to spend some time with other family. This second week was staying a few days with my mother, and Sakye seeing photos of her great-great-great grandparents, and much younger versions of many of the now older generations. It was hot, sticky days and taking Sakye to the pool I’d swum in when I’d spent summer holidays in Murwillumbah. It was gliding and duck diving and trying our hardest to sit on the bottom and breathing out through our noses when we were under water and when we did handstands. It was lame attempts at diving and then better attempts. It was watching other kids and trying out what they did. It was being convinced by the idea of a milkshake that it was time to go to the Austral cafe where her great-grandfather used to head as a 13 year old when he’d been paid for his paper round and could finally afford a milkshake and thinking it weird that Granny (great-grandmother) was drinking a lime spider. 

It was walking past the house her great-great grandparents had lived in and me telling her stories of the holidays I’d spent there as a child and of Nan and Pop who were kind and gentle and good. It was going to Wet n Wild with her cousins Hunter and Lily, and learning that Sakye and Lily have similar spirits: they’re feisty and sassy and strong.

It was heading to Redcliffe to spend a few days in the house next to my brother’s and Sakye spending time with his grandchildren – eight year old Chaylarna and six year old Johnny, cousins once removed – swimming and scooting and playing at the park, lazing about in the hammock, playing endless games of ‘what am I?’ and Mario Kart. It was being reminded of summers 20 years ago when, for a number of years, my brother and I spent time at our parents’ place with my daughter/s and his children and how they’d clicked and now our grandchildren are doing the same and it’s fabulous. I call the new crop of eight year olds their mothers’ names and they give me a look and I am reminded that they’re not children but grandchildren.

It was spending another day with grandchildren Hunter and Lily and their parents, my youngest son and his wife, playing UNO and Sequence and Quarto and What am I? and Mario Kart and watching videos on YouTube while adults talked in quiet voices and serious faces and then playing at the park and telling lame jokes and laughing and not fighting, not even once, and being called your mother’s name and thinking your grandmother is losing her marbles and eating fish and chips and there being cousins and cousins-once-removed and it was like being surrounded by friends but them all being related.

It was all new and all interesting and connections to Sakye’s own environment had to be made: do they have chickens in Queensland Grandma? Do they have horses in Queensland? Why do you have to work out ‘our’ time and ‘their’ time? Why do I have to go back to bed when it’s light outside? (Because it’s 4:40 in the morning and that’s way too early to be getting up!)

And then with more days in the heat it was sleeping in and sweating and not complaining and swimming at the beach and scooting and the skate park and more lazing in the hammock.

And then it was a day at Australia Zoo where we saw and patted all kinds of animals: kangaroos and koalas and a snake we patted and others we saw: rhinoceros which isn’t a unicorn Grandma even though there’s a horn on its head, and giraffes, and lemurs and alligators and crocodiles and a jabiru and a stork called Strike that wouldn’t get out of the way when Murray the crocodile was on the prowl. And there was Bindi and Robert Irwin and a man in the screen in the Crocoseum called Steve and there was Crikey! and enthusiasm and energy and leaping out of boats and out of cars and excitement and passion. And we stayed till the zoo closed because there was so much to see and we didn’t sleep in the car on the way back because there was a lot to talk about and digest.

At the zoo

Over the two weeks it was all five of my children, most of my (many) grandchildren, and my mother, brother, niece, great-niece, great-nephew, an uncle and aunt, and a cousin, her husband and their two children. It was a lot of people – all of them related to me in some way or other.

And now we’re home and there are no children and no grandchildren and no mother and no brother. It’s quiet and in the quiet I feel how blessed I am to have had these two weeks of family and of not quiet.

And now we’re home it’s keeping busy and being scared and trying for distraction and not to think about it and not to worry. It’s quiet and Enya calming my mind and it’s strength and positivity and knowing it’s going to be okay.

Herding cats
Posted in Life

Living though not loving the reality

I can distinctly remember a phone call I received from a close friend in late March 2012. I was on my way to Launceston to run a weekend class for my online students when my phone rang. My friend rang to tell me she’d discovered a lump in her breast and after some investigation had been diagnosed with breast cancer.

I cried all the way to Launceston and had to admit to my students that I was a bit distracted. Because my friend lived over 1500kms from me I didn’t see her live with the reality of surgery and the subsequent treatment. I saw her recently and almost seven years later she’s looking the best I’ve seen her in ages. But the intervening seven years have had their ups and downs and while she doesn’t talk much about her experience I know it wasn’t easy.

I’ve just received my own breast cancer diagnosis and the reality of the experience has hit me in a way I wasn’t at all prepared for. No one ‘expects’ to get breast cancer and I don’t imagine it’s anything but a shock to all those who hear those words but it was so far from my mind as a possibility that it’s taken a bit to be even able to say: I have breast cancer.

When I discovered the lump I decided not to tell anyone about it, not even Tim, my husband. He was going through a stressful time at work and didn’t need this added stress at home. I made an appointment to have an ultrasound but couldn’t get an appointment for four weeks. It was a long and difficult four weeks but with the help of a playlist I’d made some time earlier on Spotify – a playlist I’d called sleep songs which consisted mainly of Enya songs – I managed to keep my mind calm and my increasing stress and anxiety from Tim.

Or so I thought. He was worried about the times I’d come home from work and head upstairs to have a nap but figured that my gym sessions were wearing me out more than usual.

I went to work, tried to not think about it, not dwell on it, but every morning in the shower I was reminded of the lump’s presence. A little voice in my head told me to go to the doctor, but I was convinced the process was that you go to Breastscreen first and if they find anything a process is then put in place. Over time, the physical discomfort grew, adding to the emotional and mental discomfort I was feeling. It wasn’t pain, but the discomfort was certainly increasing.

I asked Tom, my trainer, if muscle went that low in your chest. No, he said, it doesn’t. He looked at me a moment then asked ‘are you getting it checked out?’ I nodded. ‘Have you told Tim?’ I shook my head. We talked about it sporadically at my twice-weekly sessions. It helped, but talking sporadically didn’t get it off my chest. Figuratively or literally.

Finally, the day came. I went to the Breastscreen appointment on a Friday afternoon, turning my phone off so Tim couldn’t locate me through find my friends. If you’ve already found a lump, we can’t do a mammogram I was told. You have to go to your doctor and she’ll organise a more thorough examination. Four weeks of waiting, I thought ruefully. If only I’d listened to that voice in my head.

Luckily my doctor is easy to get to see and I made an appointment for Monday afternoon. I raced out of my second meeting of the day, turned off my computer screens, grabbed my bag and headed to the appointment, pleased I have a level of independence at work that didn’t require me to account for my whereabouts every minute of the day.

My GP is quietly spoken and calm. Yes, she said. It’s a lump. I’ll make an appointment for you to have a mammogram and ultrasound. She called one imaging place. Friday? I shook my head. She called another place. Tomorrow at 9:30? Yes please. Booked.

When Tim came home that evening I told him. It was much, much harder than I thought it would be.

Next morning he finished his early morning meeting in half the allocated time – due to being super organised – and was able to come with me.

Mammogram.

Ultrasound.

She lingered for quite a while over the lump.

We were out of there by 10:30. We were quiet on the way home and waited nervously for the result, not sure how long that wait would be.

Two hours, as it turned out. My GP rang and said she was sorry but she had potentially bad news. The radiologist’s report indicated the lump was ‘suspicious’ and that further investigation was needed. She’d made an appointment with a breast specialist for Thursday – I liked that she was super organised. Take someone with you, she said. Two sets of ears are better than one.

It meant a day and a half of waiting, of excruciating uncertainty, of tears and hugs and it’ll be alrights. Of possibilities flooding my mind, of endless what ifs. None of it helpful, but all of it normal I guess.

My request for sick leave was approved and I could at least relax a little knowing I didn’t have to worry about work as well.

Off to meet Alison in the city to watch the taping of The Yearly with Charlie Pickering. It was a good distraction, but dinner afterwards was difficult. We went to our usual place, but the food tasted like sandpaper, and our dribbles of conversation always came back to what-ifs and wonderings.

Wednesday. I called Deb, my sister, in the morning. She told me she’d dreamt about me the previous night and her sleep was so disturbed she’d had to get up and read at 4am, something she never does. If I hadn’t called her, she would have called me. It’s comforting to know our connection is still so strong.

Tim found a patch of rainforest in the Otways and we packed our lunch and headed there for the day. We always find consolation in trees and these trees were particularly consoling as they were very similar to the deciduous beech trees we were so familiar with from our many years in Tasmania. Little fagus-like leaves scattered across the forest floor took me instantly back to Cradle Mountain and I felt some of the tension dissolve from my body.

We drove home via the Great Ocean Road, so I had the double delight of trees and ocean on the same day. It was beautiful, all those trees and all that ocean, but the anxiety didn’t ever go away and potential outcomes flitted through my mind all day.

Thursday. My appointment with the breast specialist was moved from 9:30 to 11:20 – not long in the scheme of things, but the delay felt much more like 24 hours than slightly less than 2. I was instantly put at ease when we met her though. She exuded confidence and compassion, and patiently answered our questions. If the result was positive, I would have surgery to remove the lump on January 15. I’d have an overnight stay in hospital, some weeks recovering, then further treatment starting six weeks later depending on the status of my receptors. A good outcome was to be oestrogen positive and HER2 negative. That would most likely mean radiotherapy but no chemo. 

But in the meantime, given the suspicious nature of the lump, I needed a biopsy – my super organised GP had organised that too, for 2pm that afternoon.

We wandered to a nearby cafe for lunch feeling more relieved than we’d felt in a few days. At least we knew what the process would be, even if we didn’t yet know the outcome. We had information – something objective and real to hold on to. And I had a glimmer of hope.

A mini-faint after the biopsy but otherwise it was a no fuss, though not at all pleasant, procedure. The nurses, Nina and Athena, were lovely. Very caring, one rubbing my ankles as the biopsy was being performed and the other noticing the pain on my face when the needle went beyond where the anaesthetic had reached. Two samples would have to do. A wet washer for my forehead, a fan to cool my body, the sheet off my feet, the blood pressure cuff wrapped around my arm, an icepack on my breast and after a few minutes all was right again. Athena went to get Tim and we went home to wait some more. The specialist had said she’d call on Monday with the result.

Friday. I stayed in bed for most of the day, Enya playing through my headphones, my mind not at all calm, but the music did help. Tim swapping the icepacks regularly – one warmed on me while the other cooled in the freezer. No phone call, no matter how desperate I was to hear. By the afternoon I’d convinced myself I was going to get the all clear.

Saturday. No run club for me this morning. No swelling or bruising from the biopsy though, so that was good. I’ve learnt to rest properly and not feel bad about spending time in bed. My two hospitalisations in the last two years have convinced me of the importance of rest for proper recovery. We had some last minute Christmas shopping to do, so slowly ambled down to the Hawthorn shops. Tim went for a coffee while I let my eyes wander over the books in Readings. My phone rang. It was the breast specialist. The report was in and she told me the result. It wasn’t what I’d wanted to hear. Did I want to come in to see her that afternoon? Yes please, I did, very much.

Again she was all compassion and confidence, answering our questions patiently. The surgery was booked in for the 15th. It meant I could still go to Tassie for Christmas, then to Queensland for the first week of January with one of my granddaughters to visit family.

I remember snatches of what she said as we drove home: my receptors are the ‘good’ ones, the lump is slow growing, it’s not life threatening, I won’t need a mastectomy, it’s treatable, I’ll have a radio oncologist and a medical oncologist, I’ll have a sentinel node biopsy meaning they put radioactive material into my chest and track it with a geiger counter to know which lymph nodes to remove, the second week of recovery will be worse than the first week, take as much time as you need/can to recover, hormone therapy, radiotherapy, possibly no chemo … if you’re going to get breast cancer, this is the one to get.

I feel fortunate.

And not.

At least I know now, the uncertainty is over. I know the process, I know that the cancer will be removed from my body, that I’ll have a good medical team providing excellent care, that I won’t lose my breast, that I may not lose my hair, that the cancer will be gone.

Fortunate.

I’m fitter and stronger than I’ve ever been in my life before, I have a tremendously supportive and capable husband, I have an excellent specialist, and I have a beautiful array of family and friends who will do what they can to care for me.

Sunday. I decide to tell the children. They all live in different states to me so that means five phone calls. It’s interesting how differently they reacted to the news. I let them know there’s a little bit of bad news but then some better news. None of them were expecting this particular piece of news. Ben makes me laugh by telling me about something he’d supposedly read in a medical journal last week. Daniel’s voice deepens with concern and I know to tell him as much information as possible. Rochelle is shocked into not being able to say very much at all. It’s hard for her to take in and she goes quiet in that way she does when she’s processing difficult information. Chase tells me he loves me through his tears. Emma offers to come over to support me through my recovery, cries when it’s time to say goodbye, and I hear ‘love you Mum’ before the phone hangs up.

I also tell Mum. It’s safe to say it came completely out of the blue for her too. She’s with my brother for Christmas and I’d warned him I was calling her with some news. He called me afterwards to let me know she’s okay and to get some more details. The telling makes it more and more real but also re-emphasises the positives. It’s not life-threatening. It’s slow growing. It’s treatable. The outcomes are good.

I am fortunate.

I am worn out by the telling and re-telling and admit to bouts of crying throughout the afternoon as my emotional energy dwindles.

It’s been a big week!

Stick with me over the coming weeks. I’m not sure if I’ll write more about this particular journey, but I just might. It might help me work through what I’m going through and it might help others too in the sense of coming to more clearly know it’s not all doom and gloom. I’m not actually sure about that part of it, but that’s my hope.

I’m fine – tired but otherwise fine – and I know I’m in good hands. I have a great medical team, good access to all the services I need, and just as importantly, if not more importantly, I’m surrounded by warm, caring and generous family and friends.