Category Archives: My Brain Tumour

15 Reality rolls and donuts

Category : My Brain Tumour

INSTALMENT 15: 12 months on

 

Where is it?  The momentous change in attitude that’s supposed to come when you’ve faced a pivotal moment in life?

Did I miss it? Apparently, because life is still life, is still life. As each day rolls by, it amuses me that I continually think I almost feel like my old self, but I never quite get there. I guess I can’t. I’m not my old self. Just a familiar version, with familiar patterns.

Holy moly!
What’s been happening? My last MRI was clear (whoo!) except for finding Jesus at the base of my skull. What the? Can you see him? On the right? Should I call the pope?

AJC Collins Brain Tumour 2017

 

 

 

 

 

 

 

From here, it’s yearly MRIs for a while as these babies are known to grow back. I’m pretty sure I scared the Clusterfluff off for good though.

Coincidence
I still have residual pain, numbness and tingling in my left hand. Turns out it could be a carpal tunnel issue and purely coincidence it’s the same side I was having seizures. Anyhoo, that’s another sideways journey being managed with braces and strapping until I can get properly assessed in February 2019. The main thing is I’m off the seizure medication, and my impacted health (failing kidneys) are on the improve.

What have I done this year?

I expanded my editing business to take on three new editors and around thirty beta readers. I can’t believe how lucky I am to have such a talented, dedicated and reliable team. Blessings. My own calendar is booked solid, and I’m hoping to publish my own novel next year — the one I was about to launch before surgery rudely interrupted the process. I’m trusting this all happened for a reason.

Next challenge
Now I have no more excuses not to return to physical fitness after stacking on weight — a small price to pay.

I tried to go back to step class a while ago. The result was tragic: a distraught drama queen when I couldn’t get halfway through a class I used to whip.  I stood, terrified of breaking my ankle, watching everyone else nailing it while I struggled to breathe. Failure. But seriously, what the hell? I went through the whole, I’m smart, I’m a good person, I’m beautiful on the inside, why do I need faux beauty on the outside? Denial? Yes. I now puff going up one flight of stairs.

But I’m an astrological rabbit
That’s me. A bunny. If I can’t get over it, I’ll go around it. I found a new yoga studio close to home. The teachers are excellent, the classes intensive, which is a beautiful thing: while I’m there, willing my body to do the impossible — in the soft heat of infrared, among floaty curtains, and a palm tree outside the window, reminding me of Port Douglas — I disconnect from life, from the dissonance in my head. There’s something magical about the space, or the people, and when I’m there, it’s all about healthy self-indulgence. It’s just a pity the donut shop on the way back to the car park isn’t just as magical with its calories.

Evie our new kitty

One step at a time.

One breath.

One day.

One donut. (Who said that?)

P.S. Meet Evie. The new darling of our office.


14 Hump month moonscape

Category : My Brain Tumour

INSTALMENT 14: POST CLUSTERFLUFF

moonscape_rock

If you were to run your fingers through the steampunk regrowth on my scalp, you’d feel a moonscape – a field of shallow bumps and craters stretching above my right ear,  back to front. It’s fascinating trying to imagine what it looks like, when I can only sense by touch. And I find myself doing that a lot, while I watch telly – like a newlywed unconsciously playing with their wedding ring – though usually I’m rubbing to relieve irritated, taut skin. I’ve been a bit slack on the papaw cream. My bad.

That moonscape is a good reflection of how life has been: up and down, moments of light and being weighed down. I haven’t felt much like blogging (or jogging), but the past week seems to have built up a ‘blurg’, rather than a ‘blog’, possibly because today is the three-month anniversary of my surgery. Hump month. BTW, I don’t recommend googling for ‘hump’ pics to accompany blogs. Trust me on this.

Neurologists are hot
I had a follow up meeting with my neurologist (well, actually there have been three surgeons, and every one of them has been hot hot hot). They all agreed, given my superhero recovery, I could start driving again, only 2.5 months post op (most often it’s 6 – 12 months). Whoo!

flip_flops_sandBut honestly, I really can’t claim any heroic actions for this on my part. It’s either luck, genetics, or a no-sympathy bush upbringing that taught me to just get on with life: “No-one’s going to help a sooky la-la.” I still resent my aunt’s taunting when I showed her my blistered feet from walking through Woomera’s red soil outback, the day my cousins stole my thongs (flip-flops for you non-Aussies) and threw them into a prickle bush. Tough talk aside, I’ve had my share of days where only ice cream on a hot fudge brownie will fix the unfixable.

Daily life
I’m taking part in regular surveys for a neurosurgical recovery study, which is occasionally making me stop and take stock of where I am and how far I’ve come: the monotonous ups and downs, days of lucidity where I maniacally sail through my workload, and others where I’m fatigued, restless, momentarily outrageously angry at nothing, everything – the universe for looking at me the wrong way – oh wait, that last bit is probably menopause.

I’ve clumsily broken or dropped things because my left hand is still a fuzzy work in progress. This has come in handy for getting rid of kitschy kitten figurines that well-meaning people have kindly given me. Ssshhh. And the letter ‘T’ is a problem on my keyboard. I need to consciously stop and make sure I hit it. HiTTTT iT.

But I’ve learned not to do or touch anything super important on days when I need to push through. And voilà, the world still turns without me. Who knew?

Disappointment
Apparently the titanium bits n pieces in my head won’t set off metal detectors in airports (bummer). On balance, the magnets in MRIs won’t blow my scalp up.

Fighting for  balance
If my April MRI shows positive results, I’ll be weaned off my anti-seizure meds by mid-June. This is something I’m sorely looking forward to, because some emotional balance, where I’m not a mess at the thought of attending a social event would be nice.

Also, because this time last year, I worked my butt off at a gym boot camp (even if I was constantly coming away with clumsy injuries, as I didn’t know Clusterfluff was making its presence felt) and now all those hard-earned results have gone to pot. Meds, fatigue, comfort eating and lack of motivation will do that. Blob city.

But I try not to place too much importance on my physical appearance, because … and I’ll likely do an angry blog rant about societal expectations screwing up people’s minds, at some point … being grateful for being alive is my current focus.

Workwise
I’ve managed to catch up with my current client workload, and I’ve gone hell for leather at setting up a couple of extensions for my editing business. The long-term plan is for this to give me more personal writing space. I’m still planning on launching my YA novel early this year.

Well, that’s my blurg done. Thanks for your patience with this patient. I wouldn’t say I’m in a happy place, but I’m digging deep for it. I firmly believe we make our own happiness, even if some days it’s not so close to the surface. But it’s in there somewhere – always.

Love, light and all that fluff … just not the  Cluster.

 

 


13 Walls to climb

Category : My Brain Tumour

INSTALMENT 13: AFTER CLUSTERFLUFF

Annie_Headshot 2018I’m lying on a table, glad there’s a cloth over my eyes so I can hide my tears, although I’m sure my occasional gulping breaths are giving me away. Sarah is hurting me – in a good way – trying to drain my blocked lymphatic system through deep massage. But far out!

She speaks softly, leaves the room. I push myself up, sit on the edge of the table. My face scrunches as more tears come. I let them; I don’t want to walk out to reception in a sobbing mess. I get dressed, grab a handful of tissues and blow my nose, startled by my reflection in the mirror – the blackness under my eyes. Bloody hell, my second week of holidays and I still look like shit.

Blow, blow, blow. Wipe, wipe.

I exit the room, head out to reception. The tears defeat me again as I try to pay my account. I get the pin code wrong, twice. Come on, brain. Cooperate! Thank god we’re alone. Sarah is kind, gently asks if I’m in pain. I shake my head, try to explain I’m okay, between sobs. What comes out among the staccato words about my surgery is: ‘I nearly died.’ I’m shocked. It’s the first time I’ve said these words and it’s to a stranger.

Sarah nods, waits for me to calm. I feel guilty for dumping that on her. It’s too much. Does she look terrified, or am I imagining it? She asks if I’m having any sort of therapy at home, suggests I need regular treatments to release my blockages. ‘You’re very congested, that’s why it’s so painful.’ I think we both know she means physically and emotionally.

I walk back to the apartment, hardly noticing my sprained toe that was throbbing when I first hobbled over to the clinic. I’m still crying but the warm rain is hiding my tears. What a drama queen.

So here I am, writing this, yet wanting to apologise for the downer update after all the upbeat posts I’ve done on Facebook – the train adventure (exhausting  –  2.00am wake up for a bus transfer due to trees down on the line), family catch-ups (which I loved every minute of, but, you know, that whole brave face thing), and the thought of traveling back the same way isn’t enticing (pulls up big girl pants. Whoo, we can do this! It’s fun.).

Train_Shoes1 Train_shoes3

I know, I know, I was warned: ‘Take it easy, look after yourself, slow down, let yourself heal’ – words I’ve said to my own friends going through tough times. But we are who we are, aren’t we? And I need to climb these shameful walls of tears, to push through the thickets of fear, so I know how to heal myself, so I know what I actually need.

It’s the drugs, I tell myself – they make you emotional and clumsy (sprained toe). True, but it’s more than that. I’m still accepting that I’m not feeling as strong as I told myself, and everyone else; that I’m not sleeping; that I need help because my left hand still isn’t cooperating (dropped my phone twice and smashed it); that my body is now bloated after all my efforts at getting fit last year and I’m embarrassed on the beach (love yourself, you’re amazing – that’s a whole other story).

But it’s the doing of stuff, the challenging myself, that breaks my funk. Nike is right.

And while I may have hidden my panic attack before I attempted the Story Bridge climb (afraid it would affect my blood pressure and cause another brain bleed – highly doubtful), then sat and had a good sook before the itty bitty hill climb here in Port Douglas, once I started the activities, I did both with ease – okay maybe the first 10 minutes of both I was puffing and thinking Motherfucker! Whose brilliant idea was this?

Story Bridge climb

Port Douglas Hill climb

 

 

I then felt encouraged to sign up for two weeks of intensive yoga (followed by banana toast and smoothies … mmmm).

Banana toast

I know this is just residual anxiety, which I’ll overcome. I mean, FFS! I’ve jumped out of a plane, bungeed, parasailed, skyjumped off a building, sat on the edge of an active volcano, and now I’ve survived brain surgery – twice. Surely I can do anything?

This feeling, this emotion, this exhaustion, will pass. And I’m so, so lucky. I know. Here I am sitting in my favourite place in FNQ, even if I sometimes want to hide.

 

And now I’m laughing because as I’m writing this and chatting to Chris, I’ve just said I think 2018 is going to be full on. A year of getting on and doing shit I’ve been wanting to for ages. It’s started already with editing queries bombarding my in-box, forcing me to instigate some changes I’ve meaning to act on for the past six months.

‘But my book!’ I moan. ‘When the hell am I going to get a chance to publish it?’
‘Just do it,’ Chris says.
He’s read my mind. Good old Nike.

Evening

We’ve decided to walk up to the shops for an ice cream before dinner. Isn’t being an adult great? As we cross the road, I pause.

‘What’s that stench?’
‘Blood and bone fertiliser.’
‘My sense of smell is coming back!’
‘So, can you smell your own farts now?’ he asks.
‘No.’ I laugh. ‘Maybe they really don’t smell, after all.’
(You had to be there. One for you, Cheryl).

Morning

A swim and rest on the beach has worked wonders.

Drama queen out and over.

PS. Scalp is healing well, some nobbly scars, hair regrowing but … perhaps a bald swish will remain. Wish they made this hat in adult size.

Hair growing back after surgery

Cat hat


12 Strength in healing

Category : My Brain Tumour

INSTALMENT 12 OF MY JOURNEY WITH CLUSTERFLUFF THE BRAIN TUMOUR

My scars are not ugly; they’re testimony to the skill of my surgeons.

Strength
It’s been a week of being surrounded by strong women who have nurtured me, held me up, made me laugh and think outside myself.

A week of family connections. A week of starting to pick up the pieces of my work and trying to find motivation. Of trusting Chris to completely reorganise our pre-booked holiday because the doctors were horrified when I mentioned we were planning on flying to FNQ.

First outings
My slightly less hirsute scalp and I have been out in public a few times this week. The first was to a café with my cousins. It crossed my mind perhaps people might find the sight of what looks akin to a naked mole rat on the side of my head a bit off-putting during dinner, but my attempts at wrapping my noggin in a scarf failed – the wounds were still too fragile and some bits were still squidgy-wobbly. So I thought screw it, this happened to me, I’m not hiding it. Besides, it’s a great conversation piece. I stuck my head at them and said, ‘Go ahead, check it out’.

Brain surgery staples

1. Surgery staples

2. Staples removed

3. Carpet pile

TC the cat

4. TC cat scan

 

 

 

 

 

Treatment has been cat scans (see left) antiseptic solution, rosehip oil, vaseline and fresh pillowcases. A few days on and I’ve now got carpet pile growing. It’s spikey and tufty, as though I could clean my boots on it – maybe once I’ve got a few more yoga sessions under my belt.

 

Yoga mat with sandalsSpeaking of yoga, I did my first return class last Sunday. Nobody stared – which is the point of yoga: concentrate on what’s on your own mat. At first, my body went WTF? This isn’t cheesecake. ‘No, it’s better,’ I promised. And it was. It did, however, highlight a strange development in my recovery – I’m still experiencing constant pins and needles in my left hand, and occasional face tingles and numbness, but now my hand has developed a new trick: it feels things differently to what I’m seeing.

Every time I did a Downward Dog, lefty felt bulges in my mat, as though there were lumps under there. Since then, I’ve found if I close my eyes, the angles and shapes I’m touching bear no resemblance to the real objects in my hand. I got frowns when I relayed this to my doctors, but they all agree the process in an unknown quantity and things should settle down once my brain stops having a hissy fit about being prodded  by uninvited utensils and learns to accept that its roommate is not coming back.

Asides
Coconut water: I’ve become addicted. This may have something to do with my kidneys being a bit unhappy with the scan dyes and meds. We’ll  be keeping an eye on them but no NYE celebrating for me.

Gingerbread

Gingerbread backfire: I tried milking the sympathy card by telling a friend I no longer had any reason to get out of bed in the mornings because I’d run out of her freshly cooked gingerbread. I could now build five gingerbread houses with the supply she delivered (not that I’m complaining). Love you Babe xx

Chocolate brains: Chris and I ordered a bunch of personalised ‘Thank You’ smarties for the neurosurgery and nursing staff at Monash. My girlfriend who owns Designer Chocolates at Chocolate Works also delivered me an extra special gift:  A chocolate brain! LOL. This went straight to Mr Andrew Danks, the head of neuro who did my op. Wish I could have seen his face.

A very cool adventure
Over the next month, Chris and I will be spending 6 days  travelling on trains: first to Sydney to visit family, then to Brisbane for NYE to climb the Story Bridge for the midnight fireworks, on to Cairns to stay with more family, then a couple of weeks in Port Douglas on our own. Bliss.

Philosophy for the future
What ifs may never happen. Now is all we have.

 


11 Home and healing

Category : My Brain Tumour

 

INSTALMENT 11 OF MY JOURNEY WITH CLUSTERFLUFF THE BRAIN TUMOUR

I’m home and patiently healing. It’s bliss. Truly ruly.

I’m planning on returning to work next week (from home). And yes, yes, I will pace myself and take naps whenever I need to. Purrrrr. Endone is still my friend.

I lost my brave

Thursday, I lost my brave after leaving the HDU (neuro ICU ward – where our obs were taken every 15 mins, then every 30 mins, then every hour  and where I learnt to recite the answers to 4 questions – who, what, where, when) I stupidly thought the new ward would be quieter, and I’d get more sleep, only being woken every 2 hours.

But then came the bonging noises, continuously reverberating throughout the night (the endless nurse-call alarms – obviously morphine had been a panacea to them). Seriously, if I had to name a more effective torture, I couldn’t – except maybe Easy Street from The Walking Dead. I cursed myself for not reminding Chris to bring my earplugs.

The new, emotional me, kicked in Friday morning, when Jess, a nurse, woke me around 7 am for obs. ‘Oh geez,’ she said. ‘I just had one of those heart-stopping moments. You were so quiet and still, I thought you’d had another seizure and weren’t breathing.’

I was so glad Jess said that, because it gave me permission to cry, mainly from exhaustion – an older gent opposite, who had a nose-feeding tube fitted, meaning he hawked up phlegm continually, had watched telly late into the night … that and the freakin’ bonging noises had made my nerves raw.

Oh, and people, when I tell you, your parents/grandparents who have just had a stroke DO NOT need a visit from your noisy, unruly, tired little princes and princesses, believe me. NONE of us do. Use your freakin’ brains – because ours are in trouble and we can’t fight for ourselves. You’re in a critical care ward FFS!

Up until that moment, I’d not let go of my brave. God, what a relief and release!

I sooked good and strong.

Jess gave me a kindly lecture about asking for help. I said I was fine – I mean, I’d only been in hospital for 4 days, while another woman, opposite, had been here for 3 weeks. Jess gave me a you’re-doing-that-martyr-thing-again look, so I asked for some tissues – it’s the little things that make a difference.

She went about her rounds and I wrote a blog on my phone then accidentally erased it. Sigh. More tears. I guess I’d said what I needed to say to myself.

I got out of bed. In the fluorescent light of the bathroom, I didn’t recognise the bloated, bruised face in the mirror – temporary, I reminded myself. I had another little sook. Because I was allowed to now.

The emotions are partially the anti-seizure drugs. I’m squidgy and spongy, like the side of my head that’s yet to heal. Want to feel it? You know you do. And there are weird sloshing noises in my brain, when I move – fluid yet to drain. All normal.

Change of holiday plans

Our January holiday is going to need rethinking – I can’t fly for quite a while, due to air pressure issues. We’re tossing up the idea of a long train journey instead.

Now

Chewing hurts. Who knew jaw muscles were so integrated with the scalp?

I can’t drive for the next 3 months.

I’m still finding little bits of sticky tape on my body.

Loss of function

I’m having a bit of trouble typing and gripping – I’ve got constant aching tingles in my left hand, but our brains are amazing things, and in time, the synapses will repair and I will relearn to use my hand effectively – it’s that fine motor skill stuff.

Staples be gone

 Bandages over stapled surgeryThis Friday, I’ll be having the staples removed from my skull. Woot! Hair-wash day. I’m so grunge right now.

Chris will stay home with me most of this week, and my good friend Kathryn will babysit me the other couple of days.

Thank you again to all my friends and family who have been an amazing support. Every little message you sent, checking in on me, meant so much. All the support you gave Chris. Every sugar-fuelled hospital visit meant the world to me – sanity among strangers.

Something beautiful to finish off

Saturday was Chris and my 17th wedding anniversary. We have a tradition of going to our favourite restaurant for the best chocolate soufflé in Melbourne. Instead, he bought me flowers, recorded  a song and cooked me giant, choc-fudge cupcakes, which he was about to bring up to the hospital to share with me, when we got the news I was being released. We devoured them at home, warm with vanilla bean ice cream. (In case you didn’t get the song it’s from The Wizard of Oz – The Scarecrow’s song – we’re a bit twisted like that.

Love you all xxx

PS: I miss champagne

 

 

 


10 I’m still here

Category : My Brain Tumour

INSTALMENT 10 OF MY JOURNEY WITH CLUSTERFLUFF THE BRAIN TUMOUR

Remember how I was joking about having ‘lasts’ last week?

Well, I’m one hugely lucky girl (and I don’t mean my new George Foreman-style swollen face).

The initial surgery went well, as expected, but was a little long. I hit the surgery table at 7.30 am and got to recovery 11.30 am, waking up around 1.30 pm. And again to Chris’s face around 2pm. He told me he’d read the ‘just in case’ letter I’d left at home for him.

*We should all write our loved ones those letters more often and not just in case.

But later in the afternoon, things went a bit awry.

Severe pain hit as did the throwing up (didn’t I say the spewing was the bit I really really wasn’t looking forward to?). I cried, feeling like a big wuss. I thought I was just emotional and this was the ‘sore’ bit the doctor had talked about. The pain got worse. They gave me Endone, twice. It had no effect.

They gave me morphine.

I started to lose function in my left arm.

I don’t remember much after that.

The doctors told Chris they were worried it could be a deep bleed, because the tumour had been deeper into the brain than expected and wrapped around an artery, which would cause paralysis if they had to clip it off.

Chris informs me he signed my life away. Thanks honey xx

He says I was taken for an emergency CT scan around 5pm, kicking some other poor sucker out.

The first scans showed nothing, so the docs assumed I was just having a hard time with the surgery area itself – muscles, bone and what not.

I lost total function of the left side of my body.

The high res scans came back. The bleed was obvious as was a blood clot. They rushed me back to surgery.

I woke up at midnight to Chris’s beautiful, concerned face.

He told me the bleed had been in a ‘good’ place after all – a surface artery where the tumour had spread along the dura layers, but the blood had pooled deeper into my brain causing pressure. The artery had probably popped due to a spike in my blood pressure and swelling in the area.

Just waiting on results from another CT today and I should get out of the High Dependency Unit and into my own room. OMG there’s a woman in here who snores like a tractor Lol

The doctors and staff have been absolutely phenomenal.

I feel so grateful albeit a little worse for wear, but have full functionality back. So much better than yesterday.

And I can still write. Whoo hoo!

Blessings ❤️

 


heart_stethoscope

9 Pre-op quickie

Category : My Brain Tumour

Instalment 9 of my journey with Clusterfluff the brain tumour

It’s been a funny week with lots of black humour about last coffees, last cheesecakes, last gigs, last Walking Dead episodes. Some friends have found this hilarious, others horrifying. Laugh, damn you!

Nine o’clock tonight I’ll be having a final MRI with GPS tracking dots – I’m going to ask if I can have some of these thingies to track down our cat, who likes to go bossing about the neighbourhood.

Then I report for duty at 7.00 am tomorrow (Tues 05/12). Chris and I have three close buddies who are coming to the hospital to keep him sane during the wait – or to drive him nuts, more likely – they’re great like that. From what I understand, it’s a 2–5 hour op, depending on what they find (insert missing brain jokes here).

For those of you wanting updates on the op outcome, Chris will post on my Facey Timeline, so please don’t inundate him with phone calls on the day – his phone will be switched off in the hospital anyway. Texts are fine as he can answer them in his own time.

I’m feeling good and strong and supported. I’m still busy doing last minute editing to keep my head in a good place – doing what I love.

Blessings to all and I’ll be back with you in a couple of days – or sooner if I can get my hands on my phone.


8 The equaliser

Category : My Brain Tumour

Instalment 8 of my journey with Clusterfluff the brain tumour

Odette the Ostrich

Before I get into the nitty gritty stuff, I want to share this: I have some strange and hilariously wonderful friends. Meet Odette the Ostrich. Thank you Annie and Wendy. This poor birdy looks like I feel his morning – we both could have done with a sleep in. I suspect, also like me, she prefers to keep her head buried in the sand. I might take her for an MRI too.

 

This week’s Rub

Chris and I have this phrase – it used to apply to our gigs, when we’d had a great run of easy, fun functions and then we came across a cow of a coordinator who shouldn’t be working in hospitality, or an arrogant best man who expected everyone to wait for him to finish his cigarette before the speeches could start, or a drunk who broke your front tooth because he wouldn’t let go of the microphone (true story). We call this phenomenon The Equaliser.

Yesterday I had an anxiety attack – some stupid little occurrence triggered me. It was nothing I couldn’t calm by stopping to breathe, talking myself out of it and getting on with my editing work, but there you have it: hidden stresses have to come out one way or another.

I know some friends and family have been worried – trying to read between the lines of my blogs – in case I’ve fallen into a crack. You can stop waiting for the shoe to drop – I think this week might be my equaliser – the one that tests me, that says stop trying to be so f#cking brave and let yourself feel.

Today’s clusterfluff:

  • 6.30am Wake up, shower
  • 7.00am Discover we have no caffeine
  • 7.45am Hospital
  • 8.00am Lying on CT machine in awkward position with MF headache
  • 8.20am It’s too quiet. These are noisy machines. Why is nothing is happening?
  • 8.25am ‘Sorry, I just need to check something with the neurology department.’
  • 8.30am ‘Sorry, but the surgeon wants an MRI with measurement dots, not a CT.
    Me: ‘I’ve had an MRI done. My scans are there in the envelope.’
    Her: ‘Blah blah blah … MRI … blah blah blah … GPS tracking measuring stuff … blah blah blah …  CT now and during the surgery means double doses of radiation. Not good.’
    Me: ‘Yeah, fair call. I’d prefer not to have radiation poisoning.’
  • 8.35am: Leave hospital, buy caffeine, go home, wait for phone call and hope surgery doesn’t get shunted.
  • Now: Remind myself to suck it up; we’re the lucky country and there are so many people don’t have access to medical systems like ours.

 

Meh. Onto better things.

Good News Department

Annie & Chris Ed Vic dinnerChris and I had a great time playing at the Editors Victoria Xmas party at CQ last night. My man is awesome. Love him to bits. He can play guitar all right too. And Fiona Scott-Norman, our guest speaker, was hilarious and poignant, as I knew she would be.

 

Thank you to Susan M., my friend who has ESP, and who happened to call just at the right time yesterday. I don’t know why I didn’t tell you what I was going through, but just bitching about mundane stuff helped.

 

Coffee and cookiesAnd lastly, I freakin’ deserve this caffeine and choc chip cookie brekky today.

Disagree at your peril.

*Update: The MRI with GPS tracking dots will go ahead on Monday. Whoo!


Cheesecake

7 Drama queens and pigeons

Category : My Brain Tumour

Instalment 7 of my journey with Clusterfluff the brain tumour

Okay, I admit it. I’m human. Today I was a drama queen.

We (Chris and I) attended my pre-op clinic appointment at Monash. We were told to allow 3-4 hours. It took 2.5 hrs. Pretty good, huh?

But …

I’ve lost a little faith in the admin system.

I hand over my referral letter. The admin woman reads it, checks her list for today. Nope. They’re not expecting me. Not today. I tell her I’ve spoken to her department three times this week. I’ve confirmed twice. ‘Oh hang on.’ She checks my letter again. Checks her list. ‘Oh yes. Okay. They didn’t write “neurology” on your letter.’

Uh huh. We sit and wait.

Some poor guy sitting in the waiting room says he’s been waiting seven months for his neuro surgery, and is due to have it tomorrow morning. He’s received seven phone calls over the past week, rescheduling his operation time, and he’s been called in today to have three more tests done pre-op. The admin staff have no idea what tests he’s talking about. The doctor has no idea. They send him away.

His op is obviously not as urgent as mine, but it brings home how fortunate I am with my one-month wait. I can’t imagine how much stress would build up over seven months, or longer.

Then comes my turn. I’m sent for an ECG (to the wrong floor and wrong area, but the staff we bump into kindly redirect our lost souls). The test only takes five minutes.

THEN … drama! We shouldn’t, but we do – sneak a peek at the results before returning them to the pre-op clinic. Oops.

“Anterior infarction – abnormal ECG”

What the?

Dr Google is immediately consulted. It turns out an anterior infarction means muscle damage to the heart, usually caused by a heart attack.

‘I’m pretty sure I’d know if I’d had a heart attack,’ I say to Chris. Okay, there’s heart disease in my family – my dad’s had a triple bypass. But still … I’d know, wouldn’t I?

I text a friend who has had heart issues.

‘You may not know,’ is the response.

Back to Dr Google. Turns out there’s such a thing as a silent heart attack. What?

We get called in to see the doctor – a lovely smiley doctor. He tells us I need another brain scan – the Stealth Guided one. ‘And you’ll have one of these during the operation too, for guidance.’

I smile back. We’re all smiles in here. ‘Yes, thank you. I’m aware. That’s today, yes?’

‘No. I doubt it will be today.’

Uhuh. Admin at work again?

‘And you’ll need to have a blood test the day prior to your operation. Just in case there’s any bleeding and you need a blood transfusion.’

‘Umm … I’m having a blood test today.’

‘You’ll need another one, the day prior.’

‘Okay.’ Take my blood. I have plenty. Smiley face.

‘Any other questions?’

‘Umm … the ECG results?’

‘Normal.’

I look at Chris. Shit! Why is it I feel perfectly okay asking Dr Google, but here’s a real-life doctor and I’m feeling like a guilty school kid, because … we peeked. But last time I peeked at test results – the MRI –  well … we all know what happened then. So, do we tell the doctor, we know it’s NOT normal?

Chris steps up. ‘It’s says abnormal.’

The doc smiles again – so cheery – pulls out the results. ‘It’s fine. I’ve checked the graphs. The machines can be overly sensitive. You’re perfectly healthy.’

Phew! There’s a good reason they put these things in envelopes. Tch!

So I had the blood test – fabulous nurse, pain free.

PigeonThen down to the café for – you guessed it – CHEESECAKE! Which I share with this fearless, cute little pigeon who sits right next to my foot, waiting for crumbs – when Chris isn’t looking. (Chris is right; Chris is ALWAYS right: she invites her friends to lunch shortly after).

And when I get home, thisDoterra oils from Caz beautiful gift of hand-blended essential oils is waiting for me, with a heartfelt note. Thank you Caz. Mwah! Forgive the shameless promotion here, but please visit Caz’s Facebook page, if you’d like some healthy, gorgeous products to spoil yourself or family and friends with. Christmas is coming! https://www.facebook.com/HomeHeartHaven/?ref=br_rs

Until the Stealth scan.

BFN xx

 

 

 

 


Black cat tattoos

6 Weird and wonderful things

Category : My Brain Tumour

Instalment 6 of my journey with Clusterfluff the brain tumour

So, about the anti-seizure meds: they are reputed to sometimes cause hallucinations. Hmmm did this stuff really happen?

BTW: no spider pics appear here – some of my mates have phobias – but there’s spidey talk, so just preparing you.  Jo B. some of this may be your doing.

Interesting fact: The arachnoid (as opposed to an arachnid) is the fine, delicate membrane – the middle one of the three membranes, or meninges, that surround the brain and spinal cord – situated between the dura mater and the pia mater.

Spidey bench demarcation

Yesterday, I took a break from editing at the library, went for a stroll to the local shops, bought a nectarine and parked my butt on a bench amidst some Australiana bush. I was immediately joined by what looked suspiciously like a redback spider. I jumped. It jumped. Man, can those things move FAST! It bolted under the bench slat. I looked underneath, trying to discern if spidey had the telltale hourglass, when out it popped again. Closer this time. Did I mention how FAST they can move? A blur, I tell you. I thumped the bench. It ran away. Then came back. This was repeated a few times, until I decided to let it have the damned bench. Enjoy, my selfish arachnidan friend. Back at the library, Kathryn suggested it may have had an egg sack close by. I suspect, since I was wearing white, it may have thought I was its egg sack. Nevertheless, its affection will remain unrequited.

Spidey tattoo

Last week, another friend suggested that, after my surgery, we should both go get a tattoo. I mused on this for a while, and being the chicken I am, decided I could do a trial with a cheeky temporary tattoo first.

Black cat tattooI ordered and received some super-cute kitty tattoos from Ebay. My first foray was this little baby, which I applied last night. And ever since, I’ve been having the crap scared out of me, cos I keep thinking there’s a spider on my wrist. (Thanks, Deb A., for this brilliant idea!)

 

 

 

Cuddly jumper

Aaaaand, today, on another break from editing, I took my coffee outside to the deck and was joined by my real black kitty (who bit me this morning, little cow). And guess what? Another jumpy spider decided to work its way across the table, down the table leg, across the deck, up the leg of my chair and onto my arm. Seeing as it was a cute-looking spidey, I gently encouraged it back onto the deck. It promptly headed for my chair leg again. A thump or two and it scarpered below deck. A few minutes later, I felt a tickle on my arm.

WTF? Am I a spider magnet this week?

I let it have the whole bleeding deck.

Someone tell me spiders are good luck, else I’m staying inside for the rest of the year; nature seems to have it in for me.

Nice stuff

And in other news, a lovely friend (thanks Babe) brought me a whole freakin’ baked cheesecake!!! It may have taken me only two days to demolish it, or it may not. I will never tell.

And another beautiful soul (thanks Deb V.) sent me some heartfelt writing about recovery.

Sigh. Still feeling blessed. As Maria sang: “I must have done something good.”

Brain News

In other, other news. I’m booked in for a pre-clinic appointment for more tests and brain scans on Mon 27 Nov.

PS: I have the best hubby in the world.

xx


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