cancerchronicles – The Bush Bugler

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?

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!