thebushbugler – The Bush Bugler

Mid-life Crisis Incoming

It’s been a hot minute since I fired up the old blog and reported in on life in this little corner of the “bush”.

2 years ago we’d just made the move to Mount Gambier and obviously things on the health front had taken a small deviation from the plan. (The plan being to live to a ripe old age whilst being as much of a nuisance to the kids as was humanly possible).

So having just bought a house in the South-East, within 2 months I was back spending time in Radelaide doing fun stuff… (The joys of regional living – the only radiation service in the entire state was 500km away). I can attest to the sheer delight the kids felt at me moving in with them.

Maybe the plan was working afterall! 😉

Since then, I’ve changed job, one kid escaped to Perth, we’ve moved again and Adelaide is home. Two kids are currently resident under our roof, the dogs are beach, Oscar demised and we have two tiny terrorists learning how to boss the joint.

But ultimately I am still here. Still me. Much the same as I ever was, just minus the tiny dragon. Maybe a wee dent to the confidence. But that’s not terminal.

So naturally as one is still alive, one’s mind turns immediately… (OK, 2 years is not necessarily the dictionary definition of immediate, but look, I’m on a roll here) … to doing THINGS.

Things that one cannot do when one is fertiliser or worm fodder.

It was not sparked by my sister entering Ironman Copenhagen. NOTHING TO DO WITH IT. And then enabled by a Run with Turia Facebook group chat talking about a crazy project to run Queenstown Marathon.

Last December is seemed like a fun jape.

Next week I’ve got to commit to dragging my carcass along for a run FOUR times a week. (I’m not necessarily managing the prescribed three at the moment). And the week one long run is a mere 20km.

Personally, I’m a big fan of Scandi Noir, but I suspect this could end up in the horror genre.

However, if you fancy following along as I try to reclaim this body of mine, entice it to do the things I want it to do, rather than having minor rebellions of the cancerous kind, then you are invited.

We are days away from Operation Queenstown.

Facing my fears one footfall at a time!

First day of “electrification” and my aura colour is cranky

I tried a free dosha quiz this morning.

Full disclosure, I had no idea what a dosha was, but it was a welcome distraction from life.

I had decided to ride my bike. I needed to make up a few kilometres in the Lakes to London challenge, and a quick ride would cover more distance than my feeble run/walks. But Zwift is about the only thing in the this world that doesn’t know I’ve got cancer.

Despite “hello, I’m Jo and I’ve had a run in with cancer. How can I help?” tripping off my tongue in any conversation, Zwift doesn’t tend to listen.

So Zwift might potentially have expectations. And those expectations might be that I’d actually work up a sweat.

So I was frantically trying to get lost in Procrastination Central. And the dosha quiz waltzed into view. BINGO!

So, a dosha is a mind/body type associated with Ayurveda. (I do remember there being an Ayurveda skincare brand back in the day, and there were 3 types, but I thought it was all about body type – and mine was obviously the 4th type: inadequate. Which is probably why it didn’t have a range that cleared up my zits).

I digress. Understanding your dosha reveals how to keep yourself in balance to stay happy, healthy and disease free.

Oh, I want to stay disease free. (And I’ll have a side of healthy and happy, too. Yes please).

So I tippety clicked my way through the very short quiz and ta daaaa.

I’m nothing and everything.

According to the Chopra website, I am a little bit of everything. A tri-doshic. (Here was me thinking I was just a tri-social. But I guess I like to do things in 3s. Birthed 3 kids, pampered 3 fur babies, dabbled in triathlon. Someone had better explain to the hubstacle that he needn’t get excited about getting a pass any time soon. He might be husband number 2, but he’s the 3rd significant relationship).

Of the 3 doshas, I’m slightly more pitta. But I’ve always loved carbs, so that explains the extra bread…

You may be wondering where I’m going with this. And I’m standing right next to you, scratching my head.

Only kidding.

The point is, I got to the RAH today for treatment number 1 and despite adding some “Calm” essential oil to the inside of my mask, I climbed off the train in Adelaide Station with my boxing gloves tied on and ready to fight.

I had busied myself post-ride (I eventually pedalled for 30 minutes and was smugly chuffed with myself, as I realised last time I used Zwift, I figured I could drop the intensity right down. In anticipation of SIDE EFFECTS INCOMING, I had adjusted the settings so that the resistance would be suitable for CANCER PATIENT RIDING BIKE mode. Therefore, my 30 minutes in the saddle were a pleasant surprise, and very welcome seeing as I have no side effects whatsoever, having not had any treatment…).

Then I threw myself into working behind the scenes, conjuring role descriptions as studiously as Hermione Granger memorising spells.

So by the time I set off to the train station to attend my “electrification” appointment – renamed by my son, I was suitably distracted and ready to face the day. I thought.

The ride into the city is 7 minutes.

And 7 minutes is all it took for me to have wound myself up into an angry red welt of dissatisfaction.

The outrage at starting treatment on a Tuesday had washed over me and I was annoyed at everyone in the Radiation Oncology department. Literally everyone.

I think if Arlo the Cancer Service Dog had put in an appearance, I’d have been grumpy with him. (Which I apologise for even thinking, Arlo, because I am desperate to meet you for a pat).

My irritability was further heightened by everyone calling me Joanne.

I’m sure I filled something out that had a section for “preferred name” and I can assure you, it did not say Joanne.

Do you reckon it was karma?

After enduring this rant, you might be wondering why the big deal about starting on a Tuesday.

Well, the thing about radiation treatment in South Australia is that it’s only available in Adelaide. And Adelaide is 443km from home. Or a 4hr 48 minute commute (oneway) according to Google Maps. Treatment is delivered on a consecutive days (excepting weekends) and is usually a minimum of 15 daily doses. (I get 20 because I’m special).

So, us country kids have to relocate to the city to receive treatment. Only, with this escape to the city there is no dishy host offering you 3 sumptuous options and a mystery house.

I’m one of the lucky ones. I have family living in the city and can stay there.

If you don’t have family or friends you can stay with, there are lodges available. I don’t know what they charge, but I believe you get reimbursed $30/day. Which is probably about 1/3 of the outlay, I would guess, as hotel rooms cost about $100 – $200/night.

My luck is even greater because I have a job that I can do remotely, and work is being very accommodating as they’re letting me be “ultra remote” by working offline. It’s one of the perks of my line of work – I’m surrounded by people who know stuff about this sort of thing. So have nudged me to take this all a bit more seriously than I had intended.

But still. I do not want to start treatment on a Tuesday, because it means I will finish on a Monday.

I am away from my husband, my fur babies, my own bed, my garden, my fave fitness studio that is a big part of both my mental and physical wellbeing.

All the things that sustain me.

I don’t want to be away a moment longer than necessary.

And then there’s the concern that if the side effects kick in, and I’m very fatigued, 443km is a long old drive. Whilst I’m still going to have to transport my car back home, if I could travel over the weekend, I could drive in convoy with the hubstacle, or one of the kids could accompany me, and we could fly them back.

But that becomes trickier when the exodus is midweek. It’s one thing to disrupt my life, my work schedule, but it has a much bigger impact when it flows into the working lives of my nearest and dearest.

And so I was cranky that this isn’t a consideration when planning treatment for country folk. Especially as there’s plenty of us. And this isn’t a new phenomenon.

(I even started working out how teams might be organised and what needed to go into job descriptions and how that impacted role classifications by the time I got home… And wondering who I needed to talk to about fixing this up).

Maybe I should drive in to treatment tomorrow. Two x 7 minutes commuting by train appears to be way too much downtime for my brain.

Besides I am now the proud owner of a blue parking permit. Not the sort that gets you next to the doors at Woolworths. But the next best thing. (And I really wanted a blue badge!!!)

Once I was home, had thrown myself into some more work tasks and been to a soothing yin yoga session this evening, I finally wondered WHY I was so antagonised.

And there, staring back at me was a message from Chopra.

Your stress response: irritable.

Me, stressed? Pass me another pitta!

Autonomy lost and found

For someone who isn’t a control freak, I like to be in control.

Since our last instalment of the cancer chronicles, I’ve experienced what my son sardonically termed “electrification”. More generally referred to in medical circles as radiation therapy, the interminable upgrade of the Gawler rail line apparently leached into our family lexicon and the naming convention was possibly influenced by The Great Delay.

I didn’t enjoy zapping. Ungrateful, I know.

My first beef was having to move to Adelaide for the duration (as radiation is not available in any other location in South Australia, and it’s a 10 hour round trip from home to hospital). Which necessitated moving in with the kids. Who, for obvious reasons, didn’t want to talk about cancer. Parents are put on this earth to be there for you, the child. NOT THE OTHER WAY ROUND!!

Then there’s the treatment.

There is nothing wrong with the treatment.

The team at the RAH try to make the experience as pleasant as possible. The rooms have sunny scenes from around South Australia lit up on the ceiling, Spotify humming away in the background and the set up is all friendly efficiency.

But the lack of agency over daily life – appointments slotted in randomly, so there is no sense of routine or opportunity to control my daily schedule; being issued a hospital band every damn day – even though I was unlikely to lose consciousness and forget who I was; forced to lie down with my arms pinned above my head; the necessity to flash my tits at a rotating straggle of clinical strangers every day of the working week and the final insult for the very lucky – I got a bonus week of being prodded with rulers and drawn on with felt tip pens as part of an elaborate geometry equation.

An overwhelming reminder that I was just a case file; a tiny cog in an enormous hospital wheel reinforced every single day. I was not connected, known, seen.

The daily procedure was quick, but induced panic for the 3 weeks of standard treatment. After many years of playing the clarinet (badly) and singing in the choir (constantly convinced the bum notes the choir master was complaining about came from me), and being exhorted to hold my breath for longer than I ever could, a wave of anxiety would creep over me as soon as the weird breathing box was taped to my chest. (Honestly, it looks like a small, standard cardboard box: something they prepared earlier as part of a Blue Peter craft project. Was it genuinely a medical device? Was it really just an elaborate joke?)

“Breath in. A little more. A little more. No, too much. Can you let some out? Yes, that’s right. Now hold it there!”

And as you hold it there, the machine whirrs into action and gives you a little zap. Which is only discernible from the click of the machine and the light in the corner of the room warning others not to enter being turned on and then off.

It’s quick. It’s painless. It’s life saving and it was available cost-free. I know I’m lucky to live in a country where healthcare is universally accessible.

But boy, the loss of autonomy made me miserable.

Having no husband available to hear my daily whinges made me grumpy.

Trying to work around the ever-shifting appointments made me guilty.

The foreboding about fatigue and radiation burns made me anxious.

My little corner of control was moving.

I enrolled at a reformer pilates studio, a yoga studio and took public transport to hospital every day I could so that incidental walking was part of my routine. I completed a couple of Zwift rides and I signed up to walk City to Bay with my daughter. I went to parkrun every week to catch up with my parkrun pals.

I did something every day.

Nothing too hectic. I didn’t push my limits.

But for 30 to 60 minutes every day I chose when I wanted to turn up, was in charge of what clothes I wore, how I moved my body, how much breath I sucked in or let out, and got to spend time amongst people I felt connected to.

And did I mention that the fatigue never came?

Garmin tells me my sleep quality was slightly better than normal through that period.

But the only time fatigue made any attempt to creep in was the days I chose to exercise later.

As soon as I moved, it vanished.

Was this just me? Has anyone else had a similar experience? Why is no-one studying this stuff?

From too many years working in HR, I regularly observe that us humans fail to thrive when agency is taken away from us. (Frederick Taylor, we’re looking at you).

So whether it was the endorphins effect, the human connection or simply a sense of control over one element of my destiny, exercise brought me a huge sense of relief. If you’re reading this and about to start radiation therapy, find ways to move each day. I don’t think you’ll regret it.

Competitive Dying – my ex is trying to beat me to the grave

Is cancer as exciting as GOT? We look at parental sacrifice, drug-induced misdemeanours and cat biscuits. #breastcancer #checkyourtits

So rather than tell you about my tatts (how badass am I?), the big news is that my ex-husband has tried to muscle in on this dying game. My kids, who have endured years of us being at loggerheads over anything we can find to fall out about, are not amused that we’ve taken things to this extreme. He went and had a heart attack. But just as I caught cancer-lite, he had a mild one. We’re both destined to mediocrity, even in the death stakes. Being an average Jo does have its advantages!

It had already struck me that cancer is a bit like Game of Thrones. What with the all the baring of boobs, fixation with dragons and continuous impending doom, the only thing that is missing is copious sex. Usually with people who are not your spouse. But may still be related. I’m fine with a hard pass on this aspect… (If your mind just went somewhere it shouldn’t, I’m onto you!)

But after a conversation, it took on a new dimension of similarity. Inter-familial sacrifice.

My daughter declared that if one of her parents had to die, better it were me. My ex remarried and has another child, not quite a teen. So better he survive, as their half-sibling is too young to lose a parent. Very altruistic!

My son was more personally affected by the latest news. He has declared that he is obviously genetically doomed to an early death. I pointed out that his chances of longevity would be improved by adding the occasional vegetable to his diet. And maybe slightly less processed meat.

I do think the cat would be the most devastated of all the kids. He has dedicated 8 years to a rigorous training program in door-opening and food-bowl filling, and I have been his star pupil. (Although both his parents have graduated cum laude).

Don’t be aghast. After all, Philip Larkin wrote the parenting handbook I relied on. You know the one:

“They fuck you up, your mum and dad. They may not mean to, but they do. They fill you with the faults they had And add some extra, just for you.”

The kids all did a good job of getting out as early as they could, with uni/boarding school, and the girls have declared their intention not to procreate. So Philip can rest easy that some heeded his words.

But the kids are not the only ones that get to suffer. I think they have overlooked the upset my current hubby (definitely an upgrade – we don’t need to live a hemisphere apart to avoid psychological warfare) might suffer. (His life would be a lot easier, admittedly, but where’s the fun without the challenge?)

His ex wife developed bowel cancer, diagnosed too late and whilst she survived a couple of years post diagnosis, died last year. He told me he feels like a jinx. I told him he’s not that magical (marvellous though he is – I wasn’t allowing him to build his part up). We were half a world away throughout her illness & treatment, but it took him a good couple of weeks to break the news about me to his son, as he was so worried it might re-trigger his trauma.

Whilst I like to think of this as my own personal drama, it has been a stark reminder that any health issue, little blip or full-size blimp, affects more than just the star. (That’s me, by the way).

People have shown amazing kindness, too. In my line of work, I see daily acts of compassion. But to have it directed at me has been a genuine (surprise) and source of strength. My job is to look after the people that look after people. Not the other way round.

And the number of people who have reached out has been rather delightful.

And generous.

I signed up for Dry July pre-surgery as the meagre bit of reading I did about breast cancer indicated there is a strong link between alcohol and the tit blitzer. Then, still high on general anaesthetic drugs, confined to the house, but not directly supervised, I signed up for Step Up to Breast Cancer for the month of August. You can sponsor me – I have managed to squeak past 10,000 steps each day. Even though it has meant marching up and down our street at 9pm in the rain on more than one occasion. And invoking the ire of my beloved (current) husband who needs to get up at 4.45am…

Yesterday I saw a post on Instagram by Dr Liz O’Riordan (the breast surgeon with breast cancer – who I came across via the You, Me and the Big C podcast). It was emphasising how important exercise is in warding off recurrence. And enlisting people to a Lakes to London challenge in August. I can blame neither drugs nor alcohol. And yet, I signed up.

Obviously I won’t be doing the actual Lakes to London challenge. The only travel I will be doing is to Adelaide, back and forth to the radiation oncology ward at the RAH. But I hope to run, ride, swim or maybe just walk over the course of the month. And I’ve set my target as 300km (although secretly I’d like to do the full 500km).

So I’ll be having radiotherapy for 4 of the 6 (or is it 5?) weeks. (Detail has always been my strong point *cough*).

But it’s virtual.

What could possibly go wrong?

Why the mince pie diet might not make my fortune

The revolutionary new diet the fitness industry doesn’t want you to know about. What is the secret?

It seems my bid to conquer the world by inventing a new must-try diet has crashed and burned. The mince pie diet, despite being packed with tasty treats, festive fun and even a side of debauchery, didn’t seem to tick the boxes the diet industry was looking for. Herumph.

I thought it had a chance. Maybe if it had been more like the Scarsdale Diet (which I tried when I was 16) – 2 weeks of privation and starvation punctuated by grapefruits, from memory. (There is some form of fruit in mince pie mince, so surely there is some health virtue contained beneath the pastry crust!)

The problem I encountered was that it lasted more than 2 weeks. Which I blame on Covid. Which I blame on the SA borders opening. And also my son snogging a girl in a nightclub. This might sound like I’m casting round for someone to blame. That’s because I am.

Cam got Covid as his early Christmas gift, (I guess I should be relieved – there are worse things he could have caught swapping body fluids with another teenager) and we got locked down with him. And then he gave it to Soph as a Boxing Day special offer, which meant I was locked down again. With a house full of mince pies. And brandy cream. And lots of wine. YUM!

Over 3 weeks of lockdown and inactivity. Eating and drinking like every day was Christmas became a teeny bit of a habit. (I told you I was good at building bad habits).

And slightly disastrous for the waistline.

I am adept at dodging a mirror (which may explain my interesting hairstyles on any given day), so had ignored any information available from reflecting on my reflection. And my brain is brilliant at deducting that any number it doesn’t like on a set of weighing scales is just a blip. Even if the blip is repeated persistently over a series of weeks.

Trend? What good is a trend to someone who is a dedicated non-follower of fashion?

There is a reason I stopped working in Finance.

I live my life in lycra (more fetchingly termed activewear, I know), which is a joy for someone determined not to notice changes of an expanding kind.

So the cancer malarky has exposed more than just my boob. Which quite frankly was more than I really wanted to put on show. However, hospital gowns have an unfortunate way of exposing not just boob, but everything from the waist up, which involves the generous extra layers of flesh that have morphed from morsels of deliciousness.

The tiny dragon was always very quiet and maintained a very low profile. If I had to have surgery, I would have much rather chosen a tummy tuck and a bit of liposuction. After all, my boob only started hurting after they began poking about under my armpit with their biopsies and popping out lymph nodes like they were pomegranate pips. I was absolutely unaware there was anything lethal lurking.

But what have boobs got to do with mince pies? Where am I going with this?

Well, my friend, despite all the literature and information that is thrust at you when you join the cancer club, the one thing that no-one really mentions is that you automatically get life membership. Because whilst cancer isn’t infectious, it seems to have a nasty habit of reinfecting parts of your body, given half a chance.

There was me thinking that once they’d dug the dragon out, I was pretty much done and dusted. Radiation for a belt and braces approach. Embrace drug-induced menopause. But then I’ll be dispatched to life as normal. Right?

Wrong.

Breast cancer is like a pickled onion. It keeps repeating on you.

So my best hope of dodging the waft of a cancerous burp is to lose the excess weight. And start running again.

According to an article on the Garmin app, a study was carried out of around 1000 post-cancer peeps who took up regular exercise. Approximately 750 took up walking and the other 250 ran. And the running group had a lower recurrence of cancer. Look, I know that was just one study, but the results were such that it has piqued interest and hopefully there will be more research.

So I have joined WeightWatchers, which I’m liking so far. (I am always a fan girl of anything new until I’m not). I like rewards, and I get bonus points for eating veggies. And drinking water. And doing exercise. Which I can use to spend on the odd mince pie, if I must. (I might wait for the festive season to be upon us).

And we all know I like playing out.

So the god send has been an exercise studio in town called The Nourish Nook.

When you get diagnosed with cancer 3 weeks after moving to somewhere where you know no-one (apart from the hubstacle, that is), it is amazing to be able to zen out in yin yoga classes, occupy your busy brain with pullies and springs on the reformer bed and today, officially 6 weeks post surgery, I braved a MetCon class. Cancer hasn’t killed me, but I wasn’t sure if HIIT would take me out. In case you were wondering, I survived.

And I am slowly finding my new tribe. Not a cancer crew. I’m just not convinced that’s what I want right now. But a bunch of fitness pals. Because I might identify as a “social” rather than an “athlete”, but I like being around positive people. The ones focused on living rather than just surviving.

First breast cancer, now imposter syndrome! Why?

Amongst the mad cows, dancing llamas and Big C, how did we get here? Is this where I’m supposed to be? Are any of us? #breastcancer #cancerchronicles #Bigc #checkyourboobs

As I learn more about this thing called breast cancer, I am finding out all sorts of weird and wonderful side effects. None of them very welcome, to be honest, but all survivable. But the one that doesn’t seem to get a big billing in the standard booklets doled out at diagnosis is imposter syndrome.

So the current status is: alongside the cord (I am pleased to report, muchos stretching is starting to have an effect) and numb bits towards the back of my armpit and boob (shaving my pits is now a high risk activity, as I can’t feel what I’m scraping!) I now have imposter syndrome.

You see, I don’t think my cancer is bad enough to count!

When I first got diagnosed, my first thought was “I don’t want to be defined by cancer”.

Actually, it was the second thought.

My very first thought was how annoyed I was that I probably couldn’t give blood after all. (For those following along from the UK, Australia has always deemed anyone who grew up in the UK during the 80s and 90s to be a mad cow, and at high risk of transmitting their dottiness, so couldn’t give blood.) Despite this ban, there are regular adverts exhorting anyone with type O negative blood to nip out for tea and biscuits in exchange for a pint. And I have the miracle blood. I am a “universal donor”. Plus I have been WILLING. But unwanted. The blood ban has now been rescinded. Yet now that they might, finally, accept me, my human udder is contaminated, putting me back on the unwanted shelf. (To be honest, I haven’t checked this out – it might not be an actual fact).

My next thought was am I eligible for a blue parking sticker so I can park closer to things? I know it’s not technically affecting my mobility, this cancer gig, but still… And can I have a big flashing light on my forehead when using public transport that says “wear a mask, cancer patient in your midst”?

However, slowly, I’ve developed this whole new dialogue that says I’m not really doing “proper cancer”.

I think it’s come about from a combination of bouncing back pretty quickly from surgery, a hiatus in treatment and listening to a fabulous podcast You, Me and the Big C.

Despite not wanting to be defined by cancer, and not being sure how I feel about “being part of the cancer community”, I may have followed a bazillion cancer accounts on Instagram and am now an avid listener to this particular broadcast.

Started by 3 women in the UK who got cancer in their 30s, they originally started blogging independently when they realised there were no resources available for younger women at the time. 2 had “the pink cancer” (breast cancer) and the other had “the brown cancer” (bowel cancer). Their mission: to put the can back into cancer.

Comparison is a terrible thing. They are a really big deal. Their blogs all took flight. Their stories resonated with a community of younger people trapped in the same void, hungry for fellowship. And we all know I’m prone to being a bit of a fan girl – they are all pretty inspirational. Podcasting their way through treatment, even from the chemo ward at times. My scribblings seem a bit lame by contrast.

bigclittleme, bowelbabe, girlvscancer — Courtesy of The Guardian

What I’ve come to realise is that being diagnosed in your 50s doesn’t generate the same pathos. My children are grown, and have turned into young adults that I’m immensely proud of. They are all capable, decent humans (despite being parented by me), and I know they will thrive in this world. I’ve been fortunate enough to live on 3 continents, and somehow continue to hold down a job I love, working alongside some very remarkable people. All in all, I’ve had a pretty good ride to this juncture.

BUT STILL, I was ~~fairly~~ – no, scratch that – highly insulted at my cancer being “typical for someone of your age”. My birth certificate might tell one story, but the thoughts in my head are definitely those of a MUCH younger woman!!!! Inside my head, we don’t mention “the middle years”. Inside my head, we’re only just getting going. So whilst doctors might not find it surprising that my [aging] body had developed a little boob tumour, I certainly did.

And that’s the other thing. It’s only a small tumour. Which they’ve chopped out now. Tiny dragon evicted. Big deal…

And it doesn’t need chemo. And everyone knows that to have REAL cancer, you have to need chemo, right? I mean, 8 weeks ago, I would have told you that anyone that got diagnosed with cancer would have to have chemo. (Even if I knew that wasn’t the case for my M-I-L. But I assumed that was an exception, not a rule).

And whilst I do need to have radiation, that’s all gone a bit quiet. (Although I am getting a call later today – from a radiation ONCOLOGIST – so things might come out of the sidings and back onto the tracks by close of play). But as I tippety-type, there are no appointments in my calendar associated with cancer.

So a part of me is wondering why I’m making such a big song and dance about this. I’m only a bit player in the theatre of cancer sufferers. And in many respects, Oscar the Furry Overlord is more of an inconvenience than the Tiny Dragon. (In the last 10 minutes, I’ve had to get up to open a door so he can get at his food bowl, because he’d just demanded more food. And then he needed assistance to go through another door to escape into the outside world. And if you’re wondering why I am being bossed about by a cat, you haven’t heard how many decibels one ginger furball can produce, or just how persistently).

I guess the fuss is that THIS WASN’T SUPPOSED TO HAPPEN TO ME. (It’s not supposed to happen to any of us!!) The females in my family live long. No-one gets cancer. (Dementia, yes, but the Big C? Absolutely not!)

But somehow, I have been wedged into playing a part in this drama. And where there’s drama, you can bet your bottom dollar, that I’m ready and willing to take on the role of prima llama.

Borrowed from the internet. – with thanks and gratitude

A very average Jo – not even an exceptional cancer

When I first got the news about the Tiny Dragon, I was disturbed rather than shocked. After all, the team told me it was a small lump, early stage. So my brain finished the sentence…and nothing to worry about.

I have the most common form of breast cancer. It’s hormone receptive, which makes it one of the most treatable. And as it’s the most common, my logic told me its the one medics have the most expertise in, as its their bread and butter cancer.

They will chop it out, they will irradiate it, they will give me a tablet to take. It will be a bit like taking a blood pressure tablet. Done. Life will go back to normal.

It was still a bit daunting that only 90% of people survive 5 years from diagnosis.

57 people (and it’s not just ladies) are diagnosed with breast cancer EVERY DAY in Australia. #checkyourboobs

Of those, 80% will have the same type of cancer as me.

But 1 in 10 of those are not going to make it to their birthday 5 years hence.

To save you whipping your calculator out, that’s 4.56 fewer birthday cakes 5 years from now.

Whilst I’m not a massive fan of birthdays, I do love cake.

My cake days could be limited.

We all know none of us are getting out of here alive. As Benjamin Franklin wrote, “nothing in this world is certain, except death and taxes.”

Still, being stamped with an expiry date is disturbing!

My ostrich brain was reluctant to pull itself out of the sand and peek at the fact that even with a very basic cancer, life was/is not going back to normal.

So the chopping is complete, and whilst they thought the tiny dragon was only going to be 1cm, it turned out to be 2cm. Still small in the scheme of cancerous tumours.

They chopped out enough spare flesh to get clear margins. This is important, as there is a “no touching” policy with cancer. Anything it touches seems to get infected, so “clear margins” is good news. And the lymph nodes they removed were also clear.

I’m not sure if the young doctor in the nuclear medicine department noticed my discomfort when he came to inject radioactive fluid into my boob and that’s why (so young, so sandy haired, he reminded me of Josh, my stepson – highly uncomfortable! when he was looking at my boob and injecting it with radioactive serum! – just wrong) that they start with 2 lymph nodes, test them, then progressively test more if they find cancerous cells in them.

6 of my lymph nodes were removed, and oddly, I feel a bit cheated that they removed so many. (It’s not that many – there are plenty more stuffed under my armpit to carry on doing their job). Bizarrely, pre-surgery, my greatest concern had been lymphodaema – a potential side effect of lymph removal.

Lymph nodes drain fluid and whisk it off round your body to organs for disposal, or wherever else your body deems necessary. The fewer lymph nodes available for drainage, the greater the risk that the fluid will build up and cause swelling in your arm. I had loads of oedema during both pregnancies. I have no desire to return to my days emulating a watermelon.

So I was miffed to hear they had taken 6. I wonder if it was like removing pips from a pomegranate? If you’ve ever seen my efforts, it looks a lot like a slasher movie – I end up daubed in red juice with arils flying everywhere…

Good news. I haven’t developed oedema, but I do have something called “cording”. The clue is in the name. It looks (and feels) like someone has inserted a thin piece of rope under my skin in my armpit and attached it to my elbow. (It can extend right down your arm to your hand, according to the literature, so I am thankful for the small mercy). The mobility has returned, as has most of the feeling – they cut through nerves to get at the nodes – but the cord pulls when I straighten my arm. It also rubs a little in my armpit, because where it was once concave, there is now a cord protruding through the centre. It may subside with time and stretching, so fingers crossed.

Not my armpit – I wouldn’t inflict that on you – one I borrowed from the interwebs. But my cord looks very much like this.

Next steps is radiotherapy. I will get a call on Friday from the radiation oncologist, which I’m guessing will be to book me in to get measured for the machine set up and tattooed so they know where to direct the rays.

Woohoo. Look at me. Getting all bad ass and tattooed in my *middle years.

And feeling pretty grateful that throughout this, I am living up to my name, and remaining a very average Jo!

To surgery and beyond

This is 1 week post surgery and I AM SORE.

I am trying to convince myself that this is a good thing. Pre-surgery, Dana (my AMAZING McGrath Breast Care Nurse) and my handbook of all things breast cancer warned me that when the surgeon has had a proddle about under your armpit and snipped out a couple of lymph nodes, it can leave you with some nerve damage and even permanent loss of feeling. Yuck. I didn’t want to sign up for that, thanks.

So here I am feeling lots of feelings in my armpit area. I think it’s a good thing…

OUCH.

So surgery was actually quite the adventure. An adventure in 3 parts. A trilogy if you will.

It all started with a visit to the Royal Adelaide Hospital, which is all swanky and space age and nearly the same size as the whole of the regional town I live in! I got to meet a real life surgeon.

One of the joys of breast cancer is how much it makes you feel like a porn star. I have never had my boobs out for public inspection so much in my life. And I’ve holidayed in Europe, so – you know – topless.

After the sandwich pressing of the mammograms and gloopy smearings of the ultrasound, I got to let a doctor cop a handful. It was quite reassuring that someone who finds lumps in breasts for a living couldn’t feel my tiny dragon. I felt vindicated at not noticing it was hiding in my boob cave.

After offering me surgery on my birthday (I politely refused), I was dismissed to see a variety of different clinical specialists. Another breast care nurse and another goody bag. (There are perks to this gig). Then a wait in line for a “carbon line*” to be inserted with more ultrasound.

So accustomed have I grown to people wanting to view my breasts, that laid on the bed by the scanner, I flopped it out. Only for the radiographer to cover me back up and tell me she wasn’t ready for that just yet. (I may have ruined her appetite for lunch).

*A carbon line is dye injected along the shortest trajectory to the tumour, guided by ultrasound. This will be the incision line.

Having had enough of me randomly exposing myself, they made me dress and toddle over to the blood letting department, followed by x-ray. All just extra checks to make sure the baby dragon hasn’t secretly learnt to breath fire and scorched other parts of my body.

I’d imagined I was only going in to the see the surgeon to arrange a date for surgery, so had anticipated I’d be in the RAH for an hour. 6 hours later, I escaped back into the sunshine.

Next up was an invitation to the Queen Elizabeth Hospital for more tracking and tracing the day before surgery. Instead of marking the tumour, this time they wanted to track which lymph nodes are linked to the lump using a radioactive agent. More injections – but quite tiny ones – and then the instruction that you need to remain where you are and massage your boob wearing a surgical glove. Glorious.

Going nuclear

Just lie here madam

Treasure within

My porn career really had found traction.

My mind keeps being drawn back to how much (inverse) correlation there is between pregnancy and breast cancer. This had me thinking of the Netflix show “Baby Fever”. It’s the boob fumbling equivalent of a visit to the sperm bank.

This is not a pleasure dome. The radioactive dye needs to travel from the tumour to the nearest lymph node and massage helps. They can then take an x-ray and mark where the surgeons need to incise to reach the relevant nodes. These are removed and tested during surgery to detect whether the cancer has spread.

The dye can take anything from 20 minutes to 3 hours (or more) to move. And you are captive until such time as it heads off on its merry way, or until they close up and go home for the night. I was keen to get this over with, so got to work until the radiographer came back to take the first scans to check.

And I had played my part well. The dye had already reached the lymph nodes.

Despite all the high tech space age equipment, the actual marking is done with a permanent marker on your skin. I looked like a pirate map. I was resplendent with an x to mark the spot and a dotted line to guide treasure hunters. Lump ahoy!

I knew being invited in for mapping the day before surgery must be a good sign that I was going to pretty high on the list for the next morning. (And I was pleased about this because it reduced the number of hours of STARVATION I would face). But I totally lucked in and was first up!

Dropped off outside the QEH in the dark at 6.45 I anxiously wandered inside. Covid questionnaire complete, form signed to say they could access the 18.2 exemption to syphon some private funding into a public setting to help off-set some costs. Then I was dispatched upstairs to the surgical ward.

It’s a bit of a rabbit warren. The corridors take you past a glass fronted sterile room containing shelf upon shelf of surgical packs. (My stomach lurched a little as reality dawned). Then you pass the doors into theatre. (OMG. It’s really happening). And then you duck into a reception area which was already humming with activity.

Checked in there, it’s back along the passage you just walked along. Past the doors to ~~doom~~ theatre. Past the room of shelves stacked full of blue covered trays. (Don’t look). And into a large echoey waiting room. RAT tested (I got to poke up my own nose – I feel very proud), measured and then weighed. (Boo). At least they write that down quietly. Once your RAT test is complete, back to the check in. Wrist band fastened on, clothes off*, gown on, calves measured and a pair of very sexy surgical stockings pulled up to your knees. And then you pad through and hop onto a bed.

*Having never had a general anaesthetic I was absurdly worried that I might pee my pants whilst I was unconscious. So I took the precaution of wearing my period pants. Smart, huh? 😉

A very friendly nurse placed a heated blanket over me (bliss I was not expecting) and then tucked a sheet over me, raised the back of my bed and taped over my wedding rings. (They said no valuables, but I’d had the awful realisation the day before that my fingers are too fat to remove them. Thank goodness for surgical tape)!

Siting up was good. I’m nosey, and it meant I could see down the ward and watch what was happening around me. There are 8 operating theatres, I was told, so this area is not the most private. IDEAL. Something to take my mind off it all.

Then an anaesthetist, wearing a flamingo headscarf came to talk to me and shove the needle in the back of my hand. And with that safely taped and anchored, the wheel locks were off and I was being wheeled down the corridor.

Having been transported into theatre, I then had to hop off the trolley I was on and climb onto the operating table. Gown unfastened and shoulder removed (but no boob out whilst I was conscious)! Heated blanket replaced (snug). Arms placed at angles on gel arm rests, tubes attached to the needle in my hand and a blood pressure monitor attached to my calf! (I didn’t know you could do that). A second anaesthetist started pumping a bit of something into my arm, and one of the surgical team made everyone stop what they were doing whilst I recited my name and details. And then I floated away very gently into a blissful oblivion only to be rudely awakened by the sound of someone calling my name.

I did not want to wake up, but once I came to a bit more, I realised that sandwiches await. And with that, I was back!

Let the games begin

And may the odds ever be in your favour

Wednesday was a tense day of ignoring what had just happened.

Obviously, my hypochondria had been leading up to this moment. I have learnt over the years that my mind can make any malady into something quite exquisitely fatal. But I also know that if I ignore it, the tragedy kraken recedes and the twinge that heralds doom turns out to be nothing more than a twinge, or a headache or a sprain. (A regular occurrence resulting from my old body obstinately refusing to be coaxed into more intense exercise than is absolutely necessary).

Living in regional South Australia, it’s been helpful that I haven’t been on death’s door. There’s an acute shortage of GPs, so I hadn’t actually managed to register with one locally in 3 years. (For readers in the UK – GPs are effectively private practitioners reimbursed by Medicare, so there is no automatic right to registration. It’s universal healthcare, Cap’n, but not as we know it).

The practice I wanted to go to weren’t taking new patients, and I never managed to be ill enough to need to see someone at one of the others. Apart from a trip to Adelaide to get a gammy knee checked out, I had had no interaction with medical practitioners since moving back to the state in 2019. And I was still alive.

So the logical part of my brain knew that this was just another panic over nothing.

After all, I don’t fit into the high risk category.

There is no family history. No breast cancer. No cancer. Nada.

I breast-fed my babies. Bloody hell, I did 2 at once. It’s been a while, but I thought that came with a cast-iron guarantee of protective qualities. Surely there should be some cancer-prevention crown for a twin powered effort!

I don’t smoke. It was clear from a very early age that I was never going to be considered cool, so I didn’t bother trying. It was all a bit too much effort. So no cancer sticks for me.

I exercise. Fairly regularly. I mean, I could be more consistent. Coach Lise will attest to that. (Actually, I’m not convinced I could be more consistent. After years of trying, I still really struggle with routine and good habits. Bad ones – those I can establish…). I digress. The thing is, I enjoy sport. So I dabble.

And I eat pretty well. I like food. The stuff that’s good for you, and the stuff that is less so. But I am not a veg dodger. I even like Brussel spouts!!!

And I drink more wine than is recommended. But alcohol is just a part of social culture, right?

The bottom line: surely I’m not old enough. Admittedly, I’ve had peri-menopause for about 5 minutes, and it hasn’t been kind to my waistband. Gammy knee, Covid restrictions and peri-menopause formed an unholy trinity, so my BMI is no longer considered healthy. But that is a fairly recent thing.

A fleeting comment from someone in the examination room kept pestering my memory. As I was being patched up from the core biopsy I was handed an appointment card with a cheery “it’s good that you’ve got an appointment on Thursday, as the surgeon will be here to talk to you.”

Why do I need to see a surgeon? What had they seen?

By Wednesday night, I decided I had better pull my head out of the sand, and have a look at the information pamphlets they had thrust into my fist.

Back at the clinic was an interminable wait; last on the list and they were running behind. I managed to distract myself with the day’s headlines, then started people watching. The age range was less distressing this time around. When you hear someone at the follow-up clinic with a crying babe in arms, it puts your own worries into perspective.

I watched as a Chinese lady went in with an interpreter, then emerged after a brief interval, obviously having got the news everyone in the waiting room wanted. She bounced out, whooping and trying to high five every staff member working behind the counter. Her vocabulary might not extend to technical medical jargon, but she was very able to thank everyone as she skipped back into a life more normal.

Others seemed to disappear into the back offices for longer. The longer the time behind the door, the more sombre the exit.

I trooped in, steered into an office with a surgeon. This was obviously going to be back here a while. They talk you through your specific results and what they can tell from the tests so far. It’s early stage, no trace was detected in the lymph nodes they tested, it’s hormone receptive.

If you’ve got to have breast cancer, I’d struck gold.

It’s the most common type of breast cancer and it’s the most treatable. So that’s something, right?

I was glad I’d done my homework, as it meant everything they were telling me was comprehensible. It was all covered in the Cancer Council booklet Understanding Breast Cancer. In fact, it was so well explained, I had an irrational desire to hurry the surgeon along. Yes, yes, I read all this. Fine. So what new news do you have?

Well, I have a 90% chance of surviving 5 years.

Is it just me, or do those odds still not sound fabulous? I know it’s better than a 100% chance of death in the next 5 minutes. And none of us are getting out of here alive. But somehow, the realisation that 1 in 10 people who get the same news I just got won’t make it past 2027 seemed a rather uncomfortable statistic.

And this is where the next irony hit me.

For the last 6 months we’d been living in Adelaide.

But 3 weeks prior to sitting in the clinic office, we’d just moved back to a regional area. All treatment options are centred on Adelaide and I now lived more than 400km away. Awesome! (We are lucky – we bought a house in town, as many regional families do when the kids head off to uni. But how do people manage when they aren’t in that position and have to attend daily radiotherapy appointments that are only availably in Adelaide)?

Having survived 6 months of my 19 year old reminding me that my presence in the “student house” was not the uni experience he’d signed up for, I’m going to be back cramping his style. Plus, I’ll be armed with a newly minted “get out of chores free” trump card: I’ve got cancer. 😉

The game has well and truly begun.

Tiny Dragon – lurking in my armpit. EWW!

The gameshow you never want to be part of.

I don’t like phones much. And I certainly don’t like phone calls from numbers I don’t recognise. I am the arch screener of calls, and whilst I can be very tech illiterate, I’ve figured out how to send lots of numbers to my block list recently.

So, I ignored the unknown number that rang out of the blue.

Until I saw that the exact same number had phoned my work number almost immediately.

Random callers might have one number, but they don’t have both.

So I answered.

And it wasn’t a call I really wanted to receive.

It was a lovely nurse from BreastScreen saying that they’d reviewed the results of my mammogram (first one ever, which had involved some pretty unpleasant squishing of the boobs and contorting of flesh, so I was looking forward to not having to repeat the experience any time soon). And they wanted to invite me back for more squishing and contorting because something had showed up. Nothing to worry about. As I hadn’t had a mammogram before, they just couldn’t rule out whether it was something that was normal for me, so they needed to do some further checks.

I have to confess to being pretty grumpy when I arrived at my recall appointment. The Covid-19 check in procedure annoyed me. Why do I have to scan a barcode? No-one is even checking the data now. Yes, that’s my name. No, that’s not my address. Not anymore. I moved 2 weeks ago. I don’t live in Adelaide now. So it’s very inconvenient that I’ve had to come back to town for these extra checks, actually.

I used my inside voice for all the grumbling.

Sitting alone in the waiting area I looked around at the variety of women of different ages, skin tones, mobilities – all here for the same reason, no doubt. I listened to the lady calling each woman in turn. Hellohowareyou. No wait for a response. Ushered into a series of opening and closing doors.

In turn, each woman disappeared behind a glass door, presented with instructions on changing and, reappeared dressed in a hospital gown, holding a shopping basket of belongings (and hopes that this was all just a big misunderstanding).

Follow-up screening is a bit like a game show where you hope NOT to progress to the next round. First another mammogram, using a 3D scanner. Squish, squash, contort. Not as bad as last time.

Back to the internal waiting area.

In to see a doctor. Very kind, very solicitous. But bearing the news that you haven’t been eliminated yet. You’ve made it through to the ultrasound round.

I used to love having ultrasounds. When I was pregnant with twins I got invited back for extra ones to check the babies were growing and not up to any mischief. (There was a chance they had twin-to-twin transfusion syndrome, they thought at one stage). Seeing the happy little heartbeats was a joy.

It’s not so much fun having your boobs scanned.

Especially when they find something lurking. A tiny dragon? Another round, and still not eliminated.

Back to the waiting room. Back in to see the doctor. More forms to sign. Then back into the ultrasound room for the next level of tests. The biopsy stage.

The same radiographer, who was lovely, doing her best to help me relax. The radiologist bustled in and explained the procedures she was about to perform. (A fine needle biopsy into the lymph node and a core biopsy of the mass they could see on the scan). She clicked the core biopsy needle so I was prepared. It sounds like a stapler, so I appreciated the heads up! A few clicks later and I was all patched up, handed a card with an appointment to get the results, and my shopping trip was complete.

2 days until I would know whether I’d finally been dropped, or whether I’d just been selected for a gameshow nearly as sinister as The Running Man.