mammogram – The Bush Bugler

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 The blood ban has now been rescinded.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.