Blog #1 - Amanda's entering the building - and it ain't pretty....

A balmy hello to y’all from sunny Vanuatu. I sit on the balcony of my elaborate oversized dinghy watching the boat people exit and return with armfuls of island products that will end up at goodwill shops, and contemplate how to write my first ever blog post. All google advice points to an open introduction of…. well…. yours truly.  And so I’m calling it time.  Time for me to enter the godamm building, face mask ORF.  It’s becoming an issue, and one that I really should address, out in the open, in the cold, full frontal and with ever rising levels of not having one fuck to give – I am showing up here, and putting it all out there.

I’m Amanda – also known as the big bitch, Annie, Mandy, Mand, Mum and Mother Dear.  I’m 55, a dreamy wishy-washy Piscean, Mum to 4 living children and 1 in spirit, mother of pugs, chief cook and organiser, chief breadwinner, counsellor, cleaner, surrogate Dad, friend of Sirens, survivor of cancer/widowhood/loss of child and receiver of bad luck at times; my latest case in point was falling through a dodgy railing and breaking my left ankle so devastatingly it may never recover.

Back to the story – and “coming out” aka “entering the building” …. I moved to Canberra in 2018 from Tasmania – in search of more riveting career prospects and to extend family connections.  Within months of being here I had a second thought about that little “pimple” on my right cheek and wondered why it hadn’t buggered off.  Didn’t hurt, wasn’t red, it just was there.  I asked my GP who said not to worry it’s just a bit of bone.  I called BS on that and jinxed myself, as the little fucker immediately started growing. 3 weeks later returned to a different GP – a good decision and she took things seriously and started the wrecking ball of action that followed.  An urgent referral to the Canberra Hospital Maxi Facial team, ultrasound, scans, biopsy and finally a diagnosis.  It wasn’t a pimple.  No shit sherlock.  I won lotto – just the wrong fucking one.  I had an Adenoid Cystic Carcinoma.  Oh yah!  They tell me it’s stupidly rare, not genetic, not lifestyle related and pretty fucking deadly if left untreated.  They tell me I’m lucky because I noticed it and took action early.  They tell me to rid myself of this little fucker will require a 14 hour surgery followed by radiation, and they will do their best to allow me to keep my teeth.  What. The. Fuck. is my reaction in general. It’s just a little bump why can’t they just burn it off?  No can do they say.

So the big brother Craig dropped off a fully in-tact sister to the Canberra Hospital at sparrows on 18 October 2018 and as he waved me goodbye he must have surely wondered what to expect when next he saw me.  The surgery took longer than expected – 18 hours in total.  They tell me I have the record for long as fuck surgery at the hospital that year.  I secretly wish they had a frequent flyer points system for surgery.  I had a team of surgeons, 2 main dudes and 35 theatre staff on 3 shifts – all there to rid me of this deadly little pimple.  One team of surgeons is working on my face; the other on harvesting the fibula from my left leg to use for reconstructing my upper jaw, as well as stripping other bodily sites for blood supply, removing a chunk of my calf and taking a skin graft from my left thigh to cover the chunk of flesh removed from calf.  It’s the stuff of

Bride of Frankenstein.  My family were worried and thought I’d kicked the bucket, as they waiting for news from the doctors.  Eventually 18 hours later they were informed surgery was done and I was in ICU.  The doc who removed the tumor told me it was a real bastard – like an octopus with tentacles spreading everywhere.  He was worried he would need to remove my nose, but decided against it.  They did not get “clean” lines in surgery, as did want me to keep my face, so radiation to clean up any remaining cancer cells was absolutely essential.

They kept me heavily sedated and drugged to the eyeballs the first few days. It was a blur of drug induced hallucinations and blurry memories.  Eventually they started waking me up. I was convinced my brother was lying to me when I asked him if I still had a nose; and they refused me a mirror, which didn’t instill confidence.  I had a gazillion tubes coming out of every part of me, and was completely stuck in bed with my head locked into position.  I do recall just wanting to be dead, this was not living, this was hell, and I didn’t want to be here for any reason.  Dead was a very attractive option.  But like most utterly shitful situations, I started inch by inch to crawl back to life; it was at a drugged out snails pace, but I was crawling back nonetheless.  After about a week they moved me to a ward, still heavily medicated for pain management.  I had a feeding tube and was confined to bed another week.  One morning a gorgeous young African nurse assistant said to me “shall we get you into the shower and wash your hair”.  Fuck yes.  Took several nurses to load me into a wheelchair, and when the water went over my head, the whole bathroom floor ran red with all the blood that washed out.  That aside, it could have been the best shower of my life, and I’ll never forget that gorgeous girls kindness and patience.  The downside of the shower was the goddam mirror in the bathroom – I finally got to see myself and it wasn’t pretty.  From a pimple to this – WTF.  Eventually they tell me I’m doing better than expected, and wouldn’t need to stay in hospital a whole month; and once I was able to get up and hobble around on a walking frame and get up stairs, I could go home.  Challenge accepted.  Check out the photo below for my first walk about the ward.  Do I look like I’d been hit by a truck – yes.  Did I crawl out of the deepest darkest hole from wanting to be dead – to learning to walk again – yes.  Once again, my kids were my ultimate saviours.

So I got home and needed a truck load of help for some time, and all of that is another story for another time.  I took 4 months off from my new job for this medical detour.  I was healing and the swelling was going down; I thought the worst was past – how wrong I was.  I started radiation early December and required 33 sessions – every day; sometimes twice a day.  I had a radiation mask made; my head was screwed down for each treatment; and every single one increased pain and discomfort.  My radiation oncologist warned me I could go blind given the location of treatment; and never sugar coated anything.  About halfway through the treatment the burns kicked in – my face was utterly fried, painful, I couldn’t eat a thing, I vomited regularly – the radiation was making me so sick, but I had to get all 33 sessions done.  I lost 20 kilos in one month – worked out how to lose weight – it’s not rocket science – just don’t fucking eat!!  No clue how but I got to my last session and “rang the bell”- then home again (not blind) for recovery.  I maintain to this day radiation is the worst thing I’ve ever been through – and that’s saying something after the gruesome surgery.

I’m over 5 years on now – and the journey did not stop with radiation unfortunately.  The radiation ultimately killed any remaining cancer cells, but it also fried my newly installed jaw reconstruction.  To the point where 2 years later this gruesome surgery needed to be repeated, this time harvesting my right fibula and flesh and bloody supply from my left arm – I’m running out of limbs at this point.  So nightmare take 2 happened in 2020 and surgery went well and I eventually recovered as best I was going to.

Since then I have had multiple reconstructive surgeries, mostly with the goal of enabling me implants and upper jaw dental rehabilitation.  Unfortunately during one of these surgeries the surgeon made a vertical cut in my upper lip to allow him access to my now narrow mouth.  This basically fucked my upper lip; and is certainly challenging the dental surgeon trying to make me a denture.  Once again, work in progress and no outcome to report yet.  The radiation fallout also fried my thyroid and I required surgery to have this removed.  This means I need medication for life.  Another casualty of the pimple.  One of my surgeries required me to have my chin sewn to my chest for 2 weeks – that was fun.  I’ve had feeding tubes, catheters, a million cannulas, skin grafts (bloody painful) and here I am – going on 6 years later and this is where I’m at today:

• I work from home (thank fuck I have a job I can do on a laptop in my dressing gown);

• I’m a single parent;

• I live with daily pain which I manage mostly;

• I broke my ankle a year ago and that’s a whole other story, but it’s a bigger issue than my face right now!!;

• My house is generally clean and there’s food in the cupboard;

• My pugs are my therapy girls and best friends;

• I’ve realised support comes from unexpected places, and not where you might expect it;

• I’ve lost friends on this journey.  I’ve gained friends too.  I continue to treasure my steady team of cheerleaders and girlfriends, without whom I would be dead.

• Some days I still want to be dead; but mostly I just want to live long enough to see my children older and finish my book I’ve started writing.

• I rarely sweat the small things, never really did – but even less so now.

• I have zero interest in people who judge others by what they own; who they know; where they work and what they look like.  Yawn.  I continue to apply my people judgement system:  “are you an asshole or not” – generally doesn’t fail.

• I’m not scared of death at all, but hope to have some peaceful and healing years left in me.

That’s the story, well the surgical story, in a compact version.  People can often feel sorry for me.  I generally don’t indulge feelings of victimhood and why me.  Although it has been totally shitful, painful and almost killed me many times – I also have this “awareness” that I deeply understand growth only comes from challenges.  There simply is no other way to grow as a person.  And with that in mind – I know I have been blessed for these growth opportunities – and my wish and desire is to put them to good use, a mission I’ve started and working on.

Some folk (even ones that live right near me) have not seen my face since before my original surgery.  I often wear a mask when I go out.  I thanked Covid for normalizing mask wearing – suited me down to the ground.  Do people stare at me – yes often.  Does this make me uncomfortable – yes it certainly can.  I only go out when necessary, and don’t love eating out much. I am more of a recluse these days, mainly due to the fact that I’m physically most comfortable at home, and generally don’t like people much lol anyway.  But I thought it was time for me to show up, show my face, and be a little braver in general.  I might look bloody awful, but I’m still me, and I’ve grown a lot.  If you’ve been able to stay on the journey with me, I applaud and thank you.  If you fell off, that’s ok, not everyone is destined to reach the finish line!

Thanks for reading down this far if you made it – not sure what the next blog will be about – but promise it won’t contain such gruesome photos 😉

Love Amanda xx

No Rain. No Flowers.