LET THE GAMES BEGIN

The Lump.

A few weeks later, I booked in for the long appointment ($190+ so need to make the most of it): get the undercarriage and the sunspots on the back of my neck checked out, plus a lube and oil change and a script for the weird, unsightly rash on my face. Oh, and by the way, is this lump on my left breasticle anything to worry about?

Bi-annual service complete, everything present and accounted for. Sunspots on the neck all ok, remember to slip-slop-slap-slide-slurp. Seems the Box Office is in need of some repair – a first and a drag. Hard core antibiotics required. No drinking. Rash on face could be leprosy or monkey pox, here’s a script for some cream. Oh, and best get that grape scanned.

I’m bleeding money. Gap payments and prescriptions. Scan – with a biopsy if required – will cost $900+. Can’t really afford it as have just paid car insurance and rego. Don’t have health cover anymore, premiums are outrageous for a single middle-aged woman. Depressing.

Mood Monitor: 😐

The Scan.

Drive home in the rain, trying not to cry (dangerous). Focus focus. Consider buying a bottle of champagne, taking it home, drinking it … then realise I’m on antibiotics, not a good mix. Think about work: surely they’ll lay me off if/when they find out I’m crook and not up to the job. Think about Simon: surely he will leave – who wants to be with a woman who is sick, loses her boob(s) and/or her hair. Let alone die. I don’t want him to waste any of his life on me. His children are more important. If it comes to it, I will tell him to walk away. I’m not into taking everyone down with the ship.

Can’t write anymore today. My breast aches after the biopsy and is starting to bruise.

Surprise! You’ve got breast cancer.

Friday, 10 June 2022
10 June 2022 was not a great one. After some ‘technical difficulties’ I managed to speak with my GP. She was keen to see me F2F – but Simon and I had gone to Queensland for the Queen’s Birthday long weekend. Kind of ominous when they ring the day before to request an appointment – and F2F – usually means it’s something they’re not comfortable discussing on the phone. I’ve known my doctor for over 10 years, her sons were a couple of years ahead of Sam at school, I sometimes saw her at the school rowing sheds at sparrows. She’s a kind, pragmatic woman.

Let’s get straight to it: mammo, ultrasound, biopsy confirms invasive ductal carcinoma. It has to come out. You will need radiation therapy and/or chemo afterwards.

Public or Private? Public. She will send referral to Canberra-based surgeons this afternoon.

I didn’t write any more that day. I was numb, just wanted to ignore it all.

What did I do to deserve this? I thought I was a good person – I look after small children and baby birds, I help old ladies across the street (unless they’ve seen-me-in-a-previous-life and start chasing me down the train carriage – true story). I work hard, I’m honest (though I may have stretched the 5km rule during lockdown). I obey (most) road rules, pay my taxes hold the lift door open for others, change the toner cartridge in the printer, say good morning to the team at the coffee shop. I drink, I don’t smoke. I eat well (except for the odd Dirty Bird). I don’t exercise enough but enjoy getting outdoors – walking with the doggo and climbing hills when I can. I breast fed my baby and floss my teeth. I consider myself a pretty well-behaved, healthy human being. So how, why has this shitty little cancer critter taken up residence in my body??

Mood Monitor: 😢😠

The Referral.

Wednesday, 15 June 2022
Finding a specialist was proving to be a little problematic. What I didn’t realise was often you needed to pick up the phone and call the surgeon’s office to follow up the referral (stupidly I thought they would ring me ….) I rang the first of the two – it was a colorectal surgeon. He did bums not boobs. The second one advised they would contact me once the doctor had had a chance to review the referral – they encouraged me to call back if I hadn’t heard back from them within 1-2 weeks …

So only a single referral to be treated as a public patient. My heart sank. My feisty aunts and uncles rallied and insisted I seek private referrals as well – somehow The Family would find the funds. I contacted my GP and was provided details for three private surgeons. I started the demoralising task of calling their ‘suites’.

Dr No. 1 – Currently on leave, returning 30th June. Ring back then.
Dr No. 2 – Currently on leave, first available appointment 20th July (yes, I’ll take it thank you).
Dr No. 3 – Receptionist away so no one to review his calendar and/or make an appointment.

Slow progress. Feel depressed. Can’t be bothered spending more energy on this today.

Friday, 17 June 2022
Dr No. 3’s receptionist rings me. Yes, Dr Majeed can see you on 28th June and he takes private and public patients. I never thought I would be as pleased to see a doctor as I am now – yahoo!

The Low-down.

Tuesday, 28 June 2022
Today was Calvary Hospital Day. Nothing like scrapping ice off the windscreen in -5 degrees. Swing past for my cup of coffee then hoof it down Parkes Way to The Other Side of Town.

I’m curious re. Calvary. Obviously it has ties to the church – how does this gig work if I don’t pray?

A shout out to the security guard who was helpful and kind when I peered over my mask with the where-the-fuck-do-I-go look. Turn left, turn right, green corridors, yellow doors to Specialist Centre then waiting room. Blow me down, 8:30 on the dot, Karen, the Breast Cancer Specialist Nurse comes through. Things are going well.

My first meeting with Dr Majeed. A gentleman who spoke directly, clearly – though not simply! He apologised in advance for the words, terminology that would be used. He spoke, I listened. He did the obligatory touch-up just to make sure the tumour was still there and not a figment of my imagination. He explained what was going to happen over the next few weeks. Here’s the summary:

The cancer is approximately 3cm which is not huge but it’s not small. They will take a few extra millimetres around the tumour, being the ‘margin’. Once removed, the beast will be sent off to the pathology lab at Canberra Hospital, to be sliced and diced, marinated and served up with a nice Chianti. Once they’ve analysed just how evil the little fucker is, the oncologist will then be able to determine treatment (at this stage, most likely to be radiation therapy).

They will also remove a few lymph nodes from my armpit and carry out a sentinel node biopsy to determine whether the cancer has spread beyond the primary tumour into the lymphatic system.

When do I get it cut out?
In the next 2 – 3 weeks, 4 at the very latest. I asked the doctor (and the nurse later) whether ‘going-private’ would mean surgery would (magically) be scheduled quicker. The answer: you may get in within one week instead of two. In my mind, that’s not worth $10K +++. The surgery will take approximately 2 hours (though sounds like there’s a lot of farting around beforehand …) Should only require an overnight stay (phew – I detest hospitals).

Instead of my nice C-cup (of which I’m quite fond), I may be rocking a lop-sided double-D for a few days due to swelling. Plus the wound might leak (oh so glamorous). Painkillers will be provided. Unfortunately the DD will be short-lived and my left breasticle will become a tad … smaller than the other one. But good news, there are bras made for these things – and I’m getting one! Plus there’s a dedicated shop that specialises in tit-mits, who knew?!

Tomorrow I am booked in for a PET scan … which apparently – and disappointingly – has nothing to do with cats and dogs. More hanging around in masks and machines, sigh. The worst part is you have to follow a strict diet 24 hours beforehand – no caffeine, no alcohol, no sweets, no carbs, lots of protein, some veges including asparagus and lettuce. Yay. Then nothing 6 hours before the scan. I’ve warned my colleagues I won’t be caffeinated until after 2pm tomorrow ….

The “Bosom Buddies” Show Bag
This was a tickler. The bag contained:
* a folder filled (packed!) with handy info on the medical lingo as well as support groups, apps, resources
* a soft, curved, handmade pillow to rest your bruised breasticle on post surgery
* a hand-made cuff to slip onto your seat belt to cushion bruised breasticle for the ride home
* a crafty cloth satchel made to drape over your should to carry your ‘bag’ in if you’re leaking(!)

Bosom Buddies: such a lovely network of people!

So much paperwork: admissions, consent, claims, medical history, allergies, NOK

The type of cancer I have is hormone receptor-positive or HR+ in that the breast cancer cells have progesterone (PR) receptors. It means I have to have the Mirena removed pronto. The Mirena releases small amounts of (synthetic) progesterone which the little beast ‘feeds’ and grows on. More stuff I didn’t know.

Roadblock.

1 July 2022
Happy New Year! A joyful day for us accountants, we can wash away a years’ worth of mistakes, wipe the slate clean and start afresh (a bit like religion – without the self-flagellation). Yay for us!

9:00am. Appointment with GP to have Mirena removed (due to the little cancer fucker feeding on the progesterone released (in minute amounts) by the IUD (not to be confused with DUI or IED).

Doc running on time – it’s a miracle.

Do you mind if a med student sits in on the consult?
Not a problem.
Oh, and would you mind if she examined your breasts – so she can feel what an abnormal lump feels like?
Happy to oblige. All in the name of education and medicine.

Now stripped off – like completely – including my socks.

First stop: the undercarriage. Speculum too short, need a bigger one. Running commentary from the doc for the benefit of the med student, she is very descriptive and thorough. I feel like a walking piece of art. I’m advised the extraction procedure may cause the cervix to have a bit of a conniption. I may experience some pain, bleeding, dizziness or feel faint/pass out (WTF?)

I assume the position. The GP and the med student (bless her) having a little fossick around for The Thread.

It’s gone.

The IUD is MIA.

My GP asks whether I have ‘felt the string recently’. I admit no, I haven’t been fossicking around down there recently (should I have been checking??) ​I’m seriously hoping it’s fallen out because if it’s still in there, worst case scenario is it will need to be removed in theatre under anesthetic. I kind of suspect that’s what may be required … I’m not pregnant and I’m not menopausal so the contraceptive is obviously still effective. GP: you will need to go for an ultrasound to determine if the Mirena is there and if so, where it is. I’ll write you a referral.​

I got a Mirena just over 5 years ago to reduce period pain, discomfort (cramps, heavy bleeding). The contraception provided by the Mirena was a bonus (or at least would be if I was getting the donut stuffed on a regular basis …🍆 🍩) I’ve had no issues with it, was literally set-and-forget. Bit like a crock pot.

Fast forward 5+ years and I discover I have a tumour growing in my body. A mutation that has a strong ‘link’ to hormones. In particular, progesterone – which is what the Mirena and mini-pill release (a synthetic form of) in teeny tiny amounts. Enough to prevent pregnancy.

While there are some types of breast cancers that involve no hormones, most are hormone-positive.

If you google ‘link between breast cancer and Mirena’ you will find pages and pages of theories. In summary, there is no conclusive evidence. Lot of statements like ‘… there’s not enough data …”; “more research is needed”.

Like any medication you take or anything you put into your body, it is about weighing up health benefits and health risks. BIG question: would I have had the IUD inserted 5 years ago knowing I would receive this diagnose 5 years later?

Tuesday, 12 July 2022
Good morning! says the technician and her student-nurse-assistant
Hi (me with whoppingly full bladder, no time for niceties)
Did they tell you would be having an internal scan today as well as an ultra-sound?
No, they did not

Yay. Oh man, was not prepared to have anything stuffed into the bearded clam today … if I’d known, I would have squeezed in some thoughtful lady-scaping. No matter.

She goes to town with the ultra-sound, pressing down firmly on all the nether regions – including greatly engorged bladder – giving a running commentary to the student nurse (who knew my left ovary was further away than my right? apparently you can make out the bowel from the ovary because it’s ‘moving’. Really? I feel violated someone is looking at my ‘bowel movement’ – that wasn’t on the referral…) Some paper towels handed and off to the toilet to empty my bladder ie. take a piss. She makes a point of telling me to squeeze extra hard, make sure it’s all out! I will. Thank you.

Time for The Probe. Pants off, gown on. I always take my socks off. Seems weird to leave them on … right? I assume the position and there we go. A bit of lube and she sails on through. If any gents are (still) reading, believe me there is no joy/thrill/divine, celestial moment being on the receiving end of this penetrative device. It makes me feel ill. I just want it out and for it to all go away.

Good news!” I can see the Mirena – and the thread, it’s in the right place, your GP should be able to remove it.
How?
You will need to speak to your GP about removal. Here’s some tissues. Clean yourself up. Get dressed. Best of luck!

That will be $298, thank you.

That was Tuesday. On Thursday I received an auto-message from my GP offering ‘results’ but the link took me to make a non-urgent-booking. Within the next 4 weeks.

Long story short: the Mirena is yet to be moved.

Score:
Tit Tumour: 1
Beared Clam aka Supermax Unit: 1
Dignity: 0

French knickers & fentanyl.

I woke early because I’m stressed. Not upset, just stressed. Plus I need to fast from 7am onwards – nil by mouth incl. water. Not so fussed on the food front (let’s face it, I’ve got ‘reserves’) but I’m dying for a coffee. I tiptoe around the kitchen (trying not to wake Sam) – boiling the kettle, heating milk – basically not tiptoeing at all. I lap up my first and final coffee for the day then drink lots of water. One of the absolute worst experiences of my life was being in recovery after an emergency c-section and being horrifically thirsty. To the point where I thought I would go mad. I had the DTs coming down from the morphine which was bad enough – shaking uncontrollably but the thirst was way way worse than that. When they say you can die of thirst, it must be an absolutely horrible way to die. I’d definitely do a Bear Grylls if I had to.

I return to the (somewhat povo) Public Hospital across the road. Public vs Private? There is definitely a difference in terms of facilities, comfort, decor etc. but the care is the same – the staff are kind and professional. Nurses are just beautiful people.

Back to The Lounge. The lovely Susan takes me to get changed. Everything off. I’m provided a pair of French lace knickers and some blue booties, an open-back gown and a one-size-fits-all bathrobe. I try the underwear on one way, then the other – wondering whether there is a front and a back. Appears not. Oh dear. Back to The Lounge. I set my mind to some writing. An hour later the nurse calls me back to put on compression stockings and I get another concert souvenir band on my ankle – a bit like dog-tags …

Name DOB

Wheeled through by expert orderly (aka a ‘wardie’) to pre-op room with an exceptionally bad paint job. I have a long time to consider this. There are two tones of cream – one on one wall, a different shade on the other three. Ran out of paint? The doors are pine-green. It just reads, effort: nil.

The lovely anaesthetist, Dr E assures me I won’t remember my time in pre-op. I take that as a challenge. She attempts to put a cannular in. Fail. A second attempt. No luck. Call in Mel, the Senior Anaesthetist to give it a crack. Mel manages to score a vein using two strategically placed torniquets, gentle coercion and some soft verbal encouragement.

Name DOB

My mind goes to strange places. I look at the grills in the ceiling and wonder if you really could crawl up and escape through there. Like in the Die Hard/action-type movies. I think about cat containment areas and why the English language has three different types of spelling for way, weigh, whey. Dr E gives me some more fentanyl.

3:30pm I get wheeled through the next set of doors to Janice’s room where the surgical team are waiting.

Name DOB

Two nurses sit in the corner counting instruments. I am reassured by that. Two other nurses are sitting on what appears to be, their phones. I have Dr E, her boss Mel and my nurse anaesthetist fussing around. The team asks whether I would like Mel to sing me to sleep. Apparently she has quite a voice. Yes please. The team agree on a song from Frozen. They’re right, Mel has the most amazing singing voice! The song rings out through the theatre – it is fun, I smile then drift away.​ 🙃🤪🥴

Recovery.

I enjoy the trip to the ward. It is like being on a gentle train journey, sailing along the corridors, slightly high. The wardie navigates the twists and turns expertly – not a jolt or a jump. He slows – and apologises – as he approaches a small bump through a doorway. I wonder if they go to bed-moving classes and get rated on their skills … he is definitely 5-star.

The same lovely young orderly brings in my bags and puts them within reach on the chair next to the bed, gives me the ‘call’ button, dims the lights then closes the door behind him. I look around groggily. I’ve missed the dinner run but they bring me (someone else’s) food. I scoff it before they work out it was meant for another patient. Starving. Then my meagre meal arrives – a snack box with a ham and cheese sandwich, some cheese and crackers and an apple. I eat the sandwich then squirrel the rest away for ‘ron. I have a feeling it will be slim pickings for the rest of the evening.

I have my own room – I catch a fleeting glimpse of the Telstra tower before the sun disappears. The old man in the room next to me has no idea of personal space. His TV is at maximum volume and he rings all and sundry – on speaker – to tell them about his surgery. Thankfully I’ve brought my noise cancelling headphones (quite possibly the best item I packed).

I’m parked-up with the bed inclined (so want to lie down to sleep … wish I’d brought my feather pillow from home). I’m attached to a saline drip. Blood pressure, oxygen and temp checked every half hour for first two hours then every hour for the next two hours. Pain meds administered. I still have my leg compression stockings on and the compression bands over the top of those. People come and go from the room, I present my arm when needed to check BP and oxygen, sleep haphazardly, limbs akimbo, wild hair tangled in tubes and oxygen mask straps. My bed resembles a mosh pit and I’m rocking a Bjork-meets-stoned-Courtney-Love-look. I don’t care, so so tired. 

I sense they have put the young-uns on the less desirable nightshift. The lass who introduces herself as ‘one of the night nurses’ is sweet … but distracted. I ask repeatedly to have my water jug filled (I’ve still got an IV in so not able to move around easily). Later in the evening I tell her I want to go to the toilet (big event) which means disconnecting the drip – or taking it with me. She proceeds to undo the tape on my hand which is holding the needle in. Even I know that is not how you ‘disconnect’ it. She realises her mistake then detaches the tube at a junction in the line and I am free to head off to the toilet. Never mind me trying to use only my right hand – with a cannular and tube attached – to wipe given the left side is out of action. Vague thoughts of keeping-things-sterile cross my mind. Later that evening/in the early hours of the morning she realised she could attach my drip unit to a portable trolley so no need to detach …. 

BP, oxygen, temp

The pain has eased from a 7 to a 2. I can feel waves of giddiness and exhaustion. I’ve taken some selfies of the underarm, quite a neat incision. I’m not sure what’s going on with the red, ‘sunburnt’ skin. Question for the doc tomorrow.

Midnight. 1am. 2am. There are buttons dinging everywhere. What do they all mean? Is someone dying? They never stop …. I can’t sleep. It is like a car assembly line. Clanking, beeping. BP, oxygen, temp. They bring me 2 Phenergan tablets which help get me 3 hours sleep.

BP, oxygen, temp

5:30am My drip machine starts beeping. The bag is empty. I buzz the young, slightly inept, disinterested night-nurse who disconnects it. I’m free! She mentions there is a kitchen down the corridor so I potter down to make a cup of tea. Bliss. I pass the night nurse on the way back, she is on her phone. Shift finishes at 6am. I thank her and go back to my room. I hear her telling a colleague she is finishing up at Calvary in 2 weeks time … seems she may have already clocked-off.

The ward is waking up. People start pouring in. First off the mark is the very efficient, bustling duty nurse. I like her. No mucking around. She tells me how the day will roll and warns me to be chill re. discharge time as there are lots of moving parts and things can move slowly. No worries.

The red stuff on my skin is from the antiseptic wash used in surgery – once upon a time it would have been the betadine-colour. The nurse says it will wash off but warns me it stains so perhaps skip the white 2000 thread count Egyptian cotton sheets for a spell. What won’t wash off is the blue dye underneath the areola. That will last for a few weeks. The dye from the scan yesterday will linger in my body for a while. It will also turn my pee blue/green which I am curious to see. For the moment, my boob (or what’s left of it) looks like it has been badly tattooed. I’m thinking I was wise not to get a tattoo on that part of my body – if breast cancer didn’t wreck it, gravity was always going to be an issue.

Bloody gravity. Bloody boobs.

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