Sometimes I wonder how I ever had time to hold down a full-time fucking job! Then I realise that’s all I was really doing… bloody working. Oh, but the $$… that’s what it was all about.
But as I’m a nerdy bloody planner, I was prepped for early retirement – mentally and financially. It took 30 years to get to that place – and I FREAKING LOVE IT!
So now I get to choose what I spend my time doing – and yep… it’s all those things I pushed to the sideline, while being a wife, mother, daughter, sister, and a bloody hard worker… but now freedom is here.
The debts are gone, the kids are adults, the location is new, the circle is widened… remember that 80’s hit by Charlene? I’ve been to Paradise but I’ve never been to me… well I think I’ve now been to me…
There are bluer skies, I’ll see the ocean and mountains before I go beddy bys…
It’s official – only one week to go until I’m no longer a public servant. HOLY SHIT!
It’s been 30+ years, four different departments and countless roles – and many achievements I’m really proud of. Some of which include the implementation of Australia’s first national Paid Parental Leave scheme, Dad and Partner Pay, women’s safety measures, Intercountry Adoptions Australia and more recently the new Child Care Subsidy… but this is not a resume. Been there, done that, it’s over.
I definitely won’t miss the hectic craziness lifestyle of balancing home and work – but I will miss the people. They are scattered far and wide across this amazing country we all call home – from Bunbury, to Melbourne, to the Gold Coast, the NSW central coast… and of course Canberra! I have made some real friends over the 30 years and I will keep in touch with plenty of them for years to come (I can hear their eyes rolling). I may be gone, but I won’t be forgetting them!
So now what?
Well, it’s definitely time to move on. The brain has not been the same since it was cut open and, although I’ve fought my issues for two years, I knew what I had to do. It was time to leave the mansion…
I actually checked out a while ago.. I suppose the last 9 months could be considered a gestation of sorts? It’s like I’ve hit the third trimester of pregnancy – I’m just sitting around getting fatter and waiting for the due date. But it’s nearly here! And it looks like that it will be a rebirth of sorts – that sea change will come sooner rather than later.
But am I ready?
Ummm… hell yeah! I’m rearing to go! I’ve been practicing all freakin year for this! I have a bunch of new hobbies to keep me busy, a beautiful coast house beckoning me and a fantastic family that supports my decision.
I’ll be spending my time cooking and baking, making candles, creating fibre art, painting, maybe writing that novel, and working on my stand up comedy material… there is plenty to do! I may even volunteer is some capacity?
But for now – it’s time to get moving on the CBR exit strategy.
After five weeks of lockdown in Canberra, I have truly started to appreciate the struggles that my friends in Melbourne, the Central Coast and Sydney have been going though.
I’m thankful I had my children more than 20 years ago. I mean, homeschooling? A big ‘F’ to that! I’m not sure who would’ve survived, me or the kids?
Yeah – it would’ve been me!
But I have been reflecting on how lucky we actually are to live in the digital age – especially during times like this! There are a lot of other things I’ve been really thankful for during lockdown.
#1 – I’m truly thankful for the connectedness provided by the internet and applications such as Facebook, FaceTime and Zoom. I can keep up-to-date with everyone and everything – without leaving my cocoon.
I even signed up for a short beginners stand-up comedy course and debuted my ‘talents’ online! This is turn has led me to find a new hobby that I’m totally into. In between making candles and knitting up a macrame storm, I make time to write down short notes and insights on shit that I think is super funny!!! Laughter is the best medicine, right?
Check out some of the online live standup happening around the nation – there are shows all the time!
#2 – I’m sure I’m not the only one grateful for streaming services… whether you prefer Netflix, Stan, Disney, or Amazon – there is always something to watch!
Streaming comes even comes with added bonuses. No advertisements! I’m happy to pay a monthly fee to not have to listen to the jingle from that stupid NRMA/Koala bullshit excuse for an ad.
#3 – Internet shopping. From MenuLog, through to Myer, and HelloFresh – everything I want (other than a big fat Mango Magic from Boost ) is just a click and delivery away. I do have to send a big shout out to all the delivery guys – they’ve been absolutely flat out! And my driveway is a killer!
#4 – Click’n’collect! Ingenious money saving scheme – no browsing and buying shit I don’t need. But it does annoy me that not all retail is open – there are some things you just can’t but at Woolies or Bunnings…
I do think I’ll continue shopping online and clicking/collecting after lockdown. I much prefer doing my groceries online and just picking them up. I don’t have to deal with checkout queues, the pressure of self-serve, or seeing people shopping in bare feet!
#5 – Finally, I am super grateful for the scientists behind the development of vaccinations. I’ve rolled my sleeves up and have been double jabbed. I’m ready to get this nation opened up.
I’ll be honest, I’m a selfish bitch… getting vaccinated wasn’t about protecting others – it was about protecting myself.
Good grief! I haven’t posted to my blog at all this year! My blogging was a clogging.
I suppose I really didn’t know how to explain what I was experiencing, and was unsure if I was ready to share this part of my journey.
But… to hell with it… when is one ever truly ready for anything?
If you’ve read my blog, you’d be totally aware of the ride I’ve been on for the last three years. While this roller coaster had many twists, turns, ups and downs – something terrible also happened along the way.
Somewhere and sometime during this unexpected trek that I embarked on, I lost something very important and special to me.
I lost me.
I lost the person I was.
I had changed.
I became an expert at smoke and mirrors. I became adept at the deflect.
While people still saw the old me, in reality all they were actually seeing was brilliantly crafted facade. Gotta give myself some credit – I can still bullshit with the best of them.
The self realisation that I had in fact changed, came as a massive shock. It sucker-punched me square in the jaw and I did not see it coming. But it came nonetheless.
The changes I experienced were small to begin with, but they started to snowball in the latter part of last year and over Christmas. Then it all fell to pieces in February.
I felt… broken. Physically not psychologically.
Finding myself in the depths of internalised despair. Not sure how to cope, deal with and move on – I took my own advice and went to see my doctor. After breaking down into a blubbering ball of boogers, it became quite obvious that I needed to take a leave of absence. It was time to take time and get some answers.
The first answer that was offered up by my new neurologist was depression. I mean, I understand I was a total snot monster when I was describing my symptoms – but I was far from depressed. I was genuinely upset about the fact that I could no longer read books because I was struggling to retain new information…
I was surprised when he asked me if maybe it was in my head. Maybe I just thought I couldn’t read. FFS….
It took this guy five minutes – FIVE FUCKING MINUTES – to label it depression. It just felt like he was trying to take an easy out… A woman crying in my office? “Here’s a prescription for antidepressants.” “Yes, yes, we’ll run a range of tests” “You should consider seeing a psychologist” TOTAL BRUSH OFF!
Our differences aside, he agreed to send me for a range of scans, tests and studies. The best thing was I was referral to a brilliant neuropsychologist. I went to see her, she listened to my story, comforted me and then blew me away with her suggestion that I was actually grieving the person I used to be.
Grieving? Was I grieving?
Google that shit… The five phases of grief.
LIGHTBULB!
Phase 1: Denial
Well that pretty much covers the period between March 2019 and January 2021. For nearly two years I have been… processing… overwhelmed by the changes I was experiencing and refusing to acknowledge the loss of my former self. I obviously needed that time to try and come to terms with my new reality – to reflect on my previous experiences in an effort to return to that person again.
Phase 2: Anger
Damn straight I was angry! I was angry for not being honest with myself. I was angry about the circumstances that got me to this point. Angry that the things I loved to do were taken away from me. Angry that I was no longer at the top of my game at work. Angry because I didn’t know what was going on.
Phase 3: Bargaining
Dwelling on what I could’ve done to not get to this point. Lots of “If only’s…” and “What if’s…”. I’m afraid to admit that even I resorted to trying to strike a deal with a higher power in an effort to regain my former self. Well, no surprise that not even the devil himself wanted to make a deal with me – my ass is probs already on his list already!
No deal…
Phase 4: Sadness
As I began to understand what I have lost and the effect this will have on my life going forward, I have to admit I’ve been sad. I’ve cried, had sleepless nights, felt overwhelmed, regretful, and alone. Been there, done that…. next.
Stage 5: Acceptance
This is where I am now – this final stage of grief. I am beginning to accept the reality of my loss. I get that it is likely that my new reality can’t be changed. While I still feel sad about it, I’m not going to let sadness define me – I’ll keep moving forward with my life.
So, where to from here?
Well, I’m still running through the full gambit of tests, scans and assessments. I’m still seeing multiple specialists and will be re-seen by them. Money, money, money… I feel like been a horny teenager at a strip club! Dollar here, dollar there, dollars flying freaking everywhere.
But I need answers, an outcome, a prognosis and I’m willing to pay for it.
It is getting very close to the end of this wretched year known as 2020… and I find myself starting to reminisce about the year that has been.
I swear this year went by super fast. Well for me it did anyway. There were definitely some days and a few weeks where it felt like time stood still. I often felt like I was caught in a never-ending loop of similarity. It was a groundhoggy type of year.
I don’t think the 24/7 news cycle helped either – it just felt repetitive. The same awful stories were on a rinse and repeat cycle. Over and over and over… same shit, different day. Continual vision of the devastating bushfires that swept through the east coast of Australia. The unbelievable speed of the pandemic and the death toll that it left in its wake. The pathetic politics that have played out across the world.
I often found myself craving and longing for good news stories – just like the deserts miss the rain. To satisfy my hunger for something fresh, I found myself signing up and strolling through the forest of digital streaming. The myriad of programs to watch astounded me. I can’t believe one can simply just watch what they want, when they want… well most of the time anyway? No freakin commercials, no Murdoch biased news, just funny mofos making me laugh. Thank the heavens for comedic relief!
So, what does 2021 have in store for the old Gabster, I wonder?
I hope that whatever the year brings it’s starts with an F-word… I’ll take fantastic, fun, fearless, fascinating and flourishing. I could’ve gone with something like fit, firm and fabulous… but fuck that – The Ferraro’s, flicks and fantasy TV have my FULL attention.
Here’s to the end of 2020 – let’s not do that again. I hope all my family and friends have a fun and fabulous festive season – another four F-words…
It’s official. There is even certificate and celebratory gift on the way. Thirty freakin years of working in the public service. Let the celebrations begin?
Not really sure why 30 years of working for the man is something to celebrate. I have given them more than half of my life. Don’t get me wrong, I have had many great opportunities, worked with great people, and helped implement major reforms which more than a million families have benefited from. It has been great!
I’m just not sure how much fuel I have left in the tank. How long can I keep doing the public service dance. Some days it feels like a slow waltz. While I don’t mind the old quick step cause it can be fun, some days feel like I’m in the mosh pit at a death metal concert. And I ain’t no death metal fan!
I think I’m serious about seriously considering moving on.
I definitely don’t have tinea, so maybe its my length of tenure that is causing my itchy feet? Or is it all the crap I’ve been through over the last two years making me continually reassess what’s important to me? Or is it simply the siren call of the beach shack – beckoning me to make a more permanent move and give up the Canberra life?
The temptation of early retirement… oooh, it’s there alright! I can freakin taste it! I’ve even done the math!
I know I’m only 48, and with life expectancies the way they are and modern medicine, I’ll probably live for another 48 years… but if I truly think about it? I really think I may be done! Done with work, done with the routine, done with the bullshit! Maybe even done with Canberra?
What in God’s name actually keeps me here? Other than my amazeballs family, I can’t think of many reasons to stay. Of course there are finances to consider, but how much does one actually need? I’m expert at spending I know, but could I also become an expert at being frugal? Maybe?
The best thing? I have plenty of options… I think I’ll keep pondering my future for now. No need to make rash decisions. There’s plenty of time!
It’s been a while since my last update. The world has been a little bit bonkers with the COVID crap, so I’ve been a bit slack with the blogging.
So what is new with me? I’ve been finding my new normal! Yes I know, I was never ‘normal’ to begin with… shhhh! I’m not far from my old self, but I’m damn close to it!
I was finally allowed to colour my hair! While I think I totally rocked the grey hair, and I liked the natural thing, I felt a little… dull? So it was time for a pick me up, I went pink! It was for a good cause – June was breast cancer awareness month. I raised some cash and got to feel funky! Well it’s July now, and the hair still has a pink tinge! This may now be the new normal – on the hair front ! Feels fun and so Me!
I’ve also managed to write two chapters of my sci-fi novel. It’s not a speedy process, and being a little anally retentive doesn’t help. But it’s a work in progress. I’ve shared early drafts with a few peeps and the feedback has been good. I also think I’m falling in love with my computer narrator! When he reads my words back to me, it’s just a little bit on the sexy side! Maybe that’s why I also love Big Brother? Who knew that digitally generated male voices could be a bit of a turn on? Okay, my new normal is definitely not normal!
While the COVID crap has been… crap, I have loved the isolation life! I have loved working in my PJs with hair like sulphur crested cockatoo! No bra, uggies on, music cranking… when work starts to feel like a hobby? That’s not freaking normal!
My dogs make great office companions, but they’re really shit with office gossip! Their breath stinks and they fart a lot… it’s the dogs, I swear!
My iso-ass has gotten a little wider. I blame the short trips to the coffee shop. What used to be 15 minute round trip is now only 15 steps. Damn this working from home… no! The no bra thing is still up there with the bonuses!
When lazy dogs become working dogs!
While my weight may have creeped up the dreaded scale, my bank balance definitely saw improvements. Well it was improving. Then I rediscovered my love of online shopping! Now my bank balance is back to normal! I know it’s not my job to single handedly stimulate the economy, but I gave it a red hot go! One of the perks of working from home- you start to realise how expensive it is just to go to work! Damn I spent a lot of money on parking, petrol, coffee and lunches when I was in the actual office. Now, I shop… simple.. NORMAL!
All bullshit and humour aside… what a massive freaking year it’s been:
I’ve survived six surgeries
We became a family of five (the boy’s GF moved in)
I started a new exciting job in the city (not so new and exciting anymore)
We finally purchased our dream coastal getaway…
But the best thing about 2019 is the improvement in my health… yeah sure it all went to shit in January, and I’m still not 100 per cent, but I’m way better now than I was! Things have definitely improved. My energy is returning and I don’t feel awful all the time – just some of the time! I’ve even managed to have a few dips in the pool this summer!
I think the thing I’m most proudest of is my resilience… I’ve been to hell and back multiple times and survived to tell the tale. I’ve even retained my sick sense of humour.
I’m also super proud of my hubby, who has become a superstar in dealing with medical emergencies…
The dream coastal getaway has been beckoning to us and unfortunately we haven’t been able to spend as much time down there as we’d like. Mostly due to work interfering with our personal lives! However the bushfires on the South Coast are beyond crazy!
While the hubby was eager to get down there, I was super concerned about the bushfires! I still remember the 2003 Canberra Bushfires… I was not prepared to go through that again. So I pulled my “Did you die this year?” card and he reluctantly agreed that we should stay in Canberra… thank fuck! It is absolutely apocalyptic down there! Of course hubby is now claiming it was his call to stay here – but we all secretly know who’s hand controls that puppet!
Regardless, I’m pretty sure the beach shack will be safe. I suspect it may have a smell… this will likely be a combo of smoke and mouldy food… some of those items in the fridge will be on the nose since the power has been cut! Ewwwww!
But, the house is just a house. I have my health and my actual home.
Today was a weird day… Out of nowhere, my emotions just crept up on me and went “Boo!”
I did not expect that bumping into an old colleague at Woolies, with her super cute new baby, would make me tear up and put me on a mini emotional roller coaster ride! I had to excuse myself and bury myself in the zucchini’s… I hope she didn’t notice (how embarrassing).
Why the hell did that happen? Maybe my blog hasn’t been as cathartic as I thought it would be… I thought I’d dealt with the emotional trauma of multiple brain surgeries? Maybe not. Maybe I’m just super tired after being back at work full-time for three weeks and am sick of trying to keep my shit together. Maybe hiding behind sarcasm and wit doesn’t always work. Maybe writing this post has me thinking negatively!
Or maybe, just maybe, I was a little jealous?
Here she stood in front of me, looking as fabulous as ever, with her gorgeous baby boy. She looked so freakin good and happy it just made me a little sad. A little sad for myself. Don’t get me wrong – I am genuinely happy for her. It’s fucking awesome that she has a new baby! I suppose I just wish I was younger and healthier. I miss those days when a lack of sleep from a baby crying was the most annoying thing about my life!
I think today was just a shitty day. First, I woke up with a headache… my eyes felt like they were getting worse… then the spring winds played havoc with my hair… I dropped my coffee… and now I’m home and totally uninspired for dinner.
I think I’ll write today off and go to bed early. Start again tomorrow.
15 minutes later…..
OMG… I’m starving… let’s get KFC!
Nothin like comfort food to make me feel better… Maybe it’s the potato’n’gravy or a maybe it’s the hormones in the chicken… regardless it’s making me happy!
It’s been about 6 weeks since my last update, and unfortunately things are not fantabulous.
I, with my hubby’s support, have decided to take the next two months off work. Better off taking a break now rather than throwing in towel altogether – right?
There two main reasons I decided to take extended leave.
Reason 1 – My Health
Don’t freak out… It’s not that my health is deteriorating… it’s just stagnant and not improving as much as I would like. I’m still suffering from daily headaches and my neck is struggling to hold my big noggin up for any length of time… which doesn’t seem that bad, but makes working off a screen pretty tough… (what a pussy right?)
So what’s the fix? I’m hoping physiotherapy will be the key to making me stronger and help me build more stamina to stay vertical for longer periods of time.
Reason 2 – Work
Those of you who know me, know that I love working. I have a great work ethic, and enjoy contributing to something bigger than me (altruistic fucker that I am). I was always happy to go the extra mile and work extended hours to achieve results.
However, all my fantastic pre-surgery work actually didn’t count for much after 6 months away. My ‘super ness’ was no longer super… people forgot (or chose to not recognise) the great things I accomplished… that my awesome team and I accomplished! I felt like all my previous achievements meant nothing.
I felt like I was being put in the too hard basket… I felt unwanted and not valued…
Here I was trying to gradually return to work, transition back to normality as such. Why was this so difficult? It may have been easier if I was placed in a role I was comfortable and more familiar with. Don’t get me wrong, the new team I was working with was great and totally supportive, but’s it’s tough feeling like the newbie again.
I felt like I was having to prove myself all over again… prove I wasn’t just a sick person someone was obligated to find a place for.
You know when you just get that ‘vibe’? It’s more than paranoia, it feels bad… maybe it’s time to get outta dodge, vamoose, etc (before I get voted off the island).
It’s only been a month since returning to work, and the time has flown! I seem to be doing alright at 3 hours a day, but some days are just harder than others. There have been a few days where I have woken up and thought “fuck me, the struggle is gonna be real today” – however, after I throw a strong coffee down my throat and have a pep talk to myself I have managed to drag my ass out of bed, log in and be productive for 3 hours (thank god my colleagues can’t actually see me)…
I have to admit it’s nice to feel like I’m contributing to society again! I’ve had to put the book writing on the back burner for a little while… but I’m still gonna do it.. Two chapters down…
Work, smerk… how have I been travelling otherwise? Scars are healing, hair is growing (although I’m not allowed to colour it for another 8 months), and I’m building more and more stamina.
The hair colour thing… I’m coping with the ash (grey) blonde thing thing… but damn I want to lighten it up a bit! This is not the fifty shades of grey moment I want in my life!
As for the stamina? Thank god it’s coming back! Since giving up smoking in September last year and undergoing six surgeries since December, I have stacked on the weight! Lying in a hospital bed for 45 days and only managing to walk for extremely short distances (bed-lounge-bed) hasn’t helped the situation.
I’ve always been happy to be on the chubby side, but with the grey hair, battered body and extra weight, I’m just not feeling the love for myself. Plus, some of my clothes are just a wee bit tighter than I’d like. So after being inspired by Val, I’ve decided to put myself on a diet! OMG! I’m scared!! So scared in fact, that I’ve had to delay the start date! How will I cope without all the things I love to eat! Arrggghhh…
I don’t want to lose heaps of weight. I just wanna be closer to my pre surgery/ pre not smoking weight.
The weight loss plan I’ve decided to try is called the Ph@tt diet… yes I am now officially a phattie!! I have a mentor and a strong support group, so here’s hoping this works!
Not much else to report at this stage… I’ll keep you posted on my weight loss journey!
Starting to get a little anxious about returning to work after five months away. While I’m only going back part-time (three hours per day) to begin with, it’ll still be tough. My fabulous workplace has agreed to allow me to work three of the days at home and two of them in the office (lucky I have been cleared to drive so I can actually get there).
I know I’m not going back to my old role, as it’s not a job one can do part-time… but what will my role be? Will I still be working with the same subject matter, or will I be tasked with something different? What if it’s a crap job and I hate it? I need to stop stressing and just wait to see what Monday brings!
I wonder if I’ll be singing and whistling while I work? Or will I experience a mix of the following feelings and emotions:
Grumpy – cranky on the days I have go to the office because I’m not a morning person!
Sleepy – yawning through meetings and crashing after three hours… Zzzzzzz
Happy – as I get to see my awesome team!
Bashful – shying away from all the welcome back hugs? Never!
Doc – because my head will start to hurt and I’ll start self diagnosing that something is wrong!
Sneezy – what if I have an allergic reaction to work, or
Dopey – god I feel dumb and out of the loop!
Anyways, I’ve prepared as much as I can. My clothes are selected, handbag packed, surface-pro charged, new pen and notebook purchased… I think I’m ready?
It’s been a couple of weeks since my last update and I have no dramas to report. Nice for a change!
I’ve had my check up with the opthomologist and the brain pressure causing my eye troubles (Papilledema) has dissipated! Unfortunately, the damage is irreversible and I need stronger reading glasses!
So I went to specsavers today to get a new script! I can’t believe it was cheaper to buy two new pairs of glasses, rather than just replacing lenses! What the actual, no wonder we have a recycling problem in this country!
Anyways… also had a catch up with my amazeballs neuro team… all is going well, my brain is behaving, however I still have a CSF leak. My latest CT scan shows my ventricles have reduced to normal but also shows that the shunt is maybe draining a little too much CSF. So they got the magnet out and changed the shunt setting… amazing technology! We’ll see how it goes!
I’m still off work and may be able to return very part-time in about 3 weeks… which is around the same time I’m hopefully allowed to drive again. Lucky I have Uber-Emily at my beck and call to get me out of the house (even if it is a little scary and tiring).
Speaking of tiring… I cannot believe how little stamina I have! They do say that every day spent in a hospital bed, takes one week to recover from… so hopefully I’ll be back to my previous energy levels by Christmas!
Another check up with the specialists in a couple of weeks…
So I’ve been home for just on two weeks and things seem to be going okay. I think I can finally say I’m recovering! No more dramas or setbacks to report.
My wounds are healing and I’ve finally been able to wash my hair. The fabulous Renee has come and tried to fix the mess the surgeons left my hair in.. I half look normal, but the scars are looking a little full on. The amount of people staring at my head in the mall the other day was ridiculous… I can’t blame them though, I’d look too!
I’m starting to feel better. I must be because I’m getting super bored and I’m not spending all my time in bed… but there is only so much TV one can endure, so I’ve had to find other things to occupy me.
As one of my new hobbies seems to be writing, I’ve decided to attempt to write a novel! It’ll probably be shite, but hey, its a good diversion from boredom and is keeping me entertained.
A big thanks to everyone one for their well wishes, care packages and visits! It’s been a long 3-4 months…
A few check ups with the eye clinic and neurology team to go. Probably new glasses too as my vision is totally shagged from the ordeal… but hey… I’m alive and okay!
Well I managed to get a week at home – better than none – before this stupid brain started misbehaving.
And it began again… Another trip to emergency, another admittance, another surgery… there is a pattern forming here!
The misbehaving brain decided to switch from low pressure to high pressure and they ended up having to install a VP shunt. Instant relief from the persistent and never ending headache and associated vomiting. Gonski! It felt like a miracle! This is great, and I can go home…
Unfortunately, this was short-lived. I started having the worst abdominal pains I had ever experienced (and I’ve had babies). The doctors and nurses tried to tell me it was just the shunt tube settling…. like hell it was! I demanded further investigation and it was found that the bottom half of the shunt had become disconnected and I needed another operation to rectify the situation. #surgerysix
So, yay I got to fast again and wait on an emergency list for surgery! I got done eventually, but I was so hangry by the time I went to theatre. To add insult to injury, there was no food on the ward when I returned. Super hubby bought me maccas brekky so I’m no longer complaining.
So far all seems to be going well… shunt working, although I have a very tender abdomen.
Wonder what the release plan looks like this time?
After 27 days, I was granted release! It may not have been actual incarceration, but being confined to a ward for nearly a month, without access to fresh air and sunshine, sure felt like it.
I actually cried when they told me I was allowed to go home… big sooky la la that I am.
Regardless, I was free! Free to sleep in my own bed, free to wipe my butt with paper that didn’t tear me a new one, and free to not share a bathroom with 6 other people. Oh freedom, it’s tastes so sweet! I won’t miss those 2 hourly observations and 5:30am blood tests…
It’s probably timely to thank the amazing doctors and nurses (and trainee nurses) at the Canberra Hospital. Damn they looked after me physically and mentally over the last month! I must work out a nice way to thank them!
So, I’m home… feeling about 70%. Biggest problem is my breathing. Walking more than 10 metres has me puffing like a 90 year old emphysema sufferer. Hubby dearest was insistent that I mention it to my doctor at my scheduled visit, and guess what… I ended up being sent to the Emergency Department. Seriously? Enough!
While I understand they were concerned about me having a pulmonary embolism following 4 surgeries in 2 months, I was pretty certain the reason I was outta breath was the fact that I’d just been too sedentary for a month. Anyway, X-ray, blood tests and CT scan later… who was right? ME! I just need to rebuild my stamina!
Still feeling a little nauseas and having headaches, but I am definitely feeling better than I did post the first surgery.
Hopefully things continue to get better each week.
Today is day 26 of my second hospital visit… I’ve undergone three separate surgeries, with a possible 4th one looming.
On a positive note, I’ve only got one stitch left in my head. The other 49 staples and stitches from the last three surgeries have been removed. The ultimate bonus being that I finally got to wash my hair!!!
Why am I still here?
Well… we just can’t seem to get the pressure right in my brain! I have headaches when upright, which causes nausea and vomiting… lying down is better, but still have the nausea.
New scans show that it’s not a high pressure issue, therefore a VP shunt may not fix whatever is going on. However my ventricles are enlarged which normally means high pressure so we’re playing a ‘watch and act’ game.
So… other than trying not become a grumpy patient whose running out of patience, I’m just chillin in bed – playing the waiting game..
Since my last update, I have undergone another two surgeries under general anaesthetic. These were undertaken a day apart!
One was to place an external ventricular drain (EVD) out of the top of my head. The other was a 5.5 hour ordeal to once again try and stop the effing cerebrospinal fluid (CSF) leaking out of my head.
So far, the surgeries seem to have been successful.
Interestingly enough though, the anaesthetic team came for a visit to check on me post surgery… Apparently one of the machines had a glitch in theatre and I woke up on the table… that’s creepy AF! I assured them that I can’t remember anything. However, according to what they’ve seen in the past, I probably won’t remember for another month. But hey, there is counselling on offer if I need it!
So, post surgeries I’ve been feeling okay. Not great… but okay! The way I feel can probably be attributed to the fact that they’ve weened me of the good drugs (mofos), and are testing my brain’s inter cranial pressure… fun!
Anyway, other than the surgeries, it’s been an uneventful week with nothing else to really report… I have been blessed with fab visitors to break the hospital cycle! I also have some great new scars! I swear it looks like I have a vagina on the back of my head!
It’s the Australia Day Publuc holiday and a week post surgery to fix the CSF leak which sent me back to hospital 9 days ago! I feel okay, the team did an amazing job, just need to manage the drainage!
I find it hard to believe how simple it was to sleep with a drainage bag hanging out of your head! Your body and brain just seem to to subconsciously know what to do and what not to do. Pretty cool actually!
Anyways… a drainage tube was put in to remove the excess fluid and swelling from the original surgery. It definitely did it’s job and the lump on the back of my head (I am not animal) has significantly subsided! Of course, with all things me at the moment, it maybe drained a little too well!
Apparently, the average person can produce and lose between 500ml and 750ml of CSF a day! I was draining out close to double that! Such an effing overachiever, I know! So the decision was made to clamp the drain and get this brain of mine to rebalance/calibrate…
Drain clamped at 11am = wound explosion at 6pm! The shit went everywhere! Yay! Excitement!
The docs advise that if CSF could get out, shit can get in and it was time to pull the drain and stitch up the hole! More fun! Let’s do that!
Drain got removed at 9pm… better to close the wound completely than have gens going in! I’m so tough, I even had 4 stitches with no anaesthetic! Unfortunately the wound exploded at 4am… CSF everywhere! Even on my Vera Wang pillow! #nothappyjan
Two new stitches, again with no anaesthetic, and it’s a waiting game! But that’s okay, I’ll go with the flow and see what happens…. There are two schools of thought… leave it and wait, or shunt this mofo…
We’re taking the waiting path for now.
Probably the most annoying secondary issue I’m yet to sort out is the vision issues I now have post the original trauma. #sigh
So… Post the picture of an overstuffed Christmas mermaid, what actually happened?
Well the experts got me to the emergency department at the the Canberra hospital! I’m pretty certain we’d been there, done that on Christmas Eve. It wasn’t that much fun last time, not this one either!
Anyways… I had no idea WTAF was happening. Apparently Brendan came in the ambo for a joy ride to the hospital, swapped with the hubby, mum rocked up as well and I was totally CLUELESS!!
I had no effing idea! I was a total numpty!
Then what you wonder? A barrage of scams and tests and a likely flight back to Melbourne to have this shite fixed! I had a major cerebrospinal fluid leak, this was not good and required emergency surgery!
Obviously there was NO FUCKING WAY IN HELL I was going back to have whoever didn’t quite do it right, to give them an opportunity to try to fix it! I wanted to desperately stay in Canberra with my family and support network. So, I begged and pleaded with the fabulous neuro team at Canberra hospital to take over my case and they agreed! I owe them so much and I think the guy that did my original surgery is a little bit pissy…. whatever!
The fix
I lined up for surgery first thing Monday morning. Only 36 hours ago did those fireman save my life! How quick is that! And I’m in Canberra and near my family…
My new amazing neurosurgeon had to:
reopen my wound,
make the decompression hole bigger to get it in a better position
Stitch new dura patches over the wound with no gaps this time
and then place a drainage tube out the back of my head!
So pretty much, she redid my surgery bigger and better than the original!
Day 3 post op and I’m feeling pretty good, but there is concern about the amount of CSF draining… 1.2 litres in 48 hours! May need to have the drain removed and have a shunt put in before I know it!
Other crap and health issues have popped up is but I’ll use that as fodder for the next update.
The week was turning into another week of feeling the same shitty way, but quickly turned into a crazy nightmare!
The week was quickly going downhill. I told a couple of friends I wasn’t up for visitors… I was starting to feel very I’ll. Still my neuro and doc tell me it’s okay.
I considered calling an ambulance, but decided to drag Emily out of bed to help keep an eye on me! Best move ever!
The scene!
After vomiting while sitting on the toilet I decided to keel the fuck over! Like a mermaid post-Christmas, my lily white, rather rubenesque bottom, titties and all, ended up flat out on the floor of my en-suite with my face squished against a tile wall..
Best thing about this was it was ALL on show to four fireman and two ambulance officers. All of this while being out to it with no pulse and needing resuscitation. No I didn’t see a light or tunnel! Its definitely not a position I would say I’d like to be caught dead In, but alas I was.
However, if I spin the story with a couple of hotties from the fireman calendar with perfect ash stained abs… it slightly more appealing.
Nevertheless they, with Emily’s assistance (I am a heavy person to roll over), got me to the hospital to take care of me! It only took four of those handsome men to push my dead weight arse up the driveway!
That moment when you wonder… “Am I gonna get better than this?” Or “Is this the new normal?”… The appropriate answers being… YES, you will get better, and NO, this is not normal!
Let’s call this the plateau! I feel great in comparison to two weeks ago, but no different from last week or the week before. I eat more, sleep less, pain is better, I’m not violently ill. I want to start doing stuff, but I’m just…. MEH?
Hubby is back at work and interstate! My neurosurgeon gave me clearance to start driving again as he won’t be here (VERY SHORT DISTANCES ONLY) but I know I’m not ready!
Having him out of the house is a good thing, for both his sanity and mine! It has forced me to more independent, although I have had help from both Brendan and Emily (what great kids.. I did something right there). I also think NOT having the question “How are you?” thrown at you multiple times a day, is aiding in recovery. I’m not constantly thinking about how I am! I have developed some sort of rash however, which is dominating my mirror time. #possiblyheatrash
On a high note, I’ve discovered:
SBS on demand and ABC iView
I like coffee again.
The convenience of Woolworths home shopping
The joy of having a cleaner – best investment of my stop smoking savings ever!
I have been graced with lots of visitors to break the cycle of same shit, same drugs, different day. Love you all for coming to keep me sane!
My only other medical drama to report is the ridiculous swelling around the wound site. Multiple emails and visits to the neurosurgeon and docs who don’t seem concerned… they keep assuring me it’s perfectly normal and I’m okay… I’m not real sure, but we’ll see if it improves. I’m seeing the Neurosurgeon next week, we’ll ask him more about that then!
Trying to keep on being positive! I think I may need Val’s button!
It’s been a week since my last blog and I am now 5 weeks post op! What’s been happening?
Not much actually!
I think this is where the battle may actually begin… the anxiety about surgery, travel and recovery have passed. It’s just a waiting game to get better!
It’s not bad, just so damn boring! I just feel like I have the attention span of a freaking 3 year old! I can’t concentrate, or maintain an activity for more than 20 minutes… Entertaining myself is the biggest problem!
So far I have tried to:
Teach myself to knit (fail)
Complete a jigsaw puzzle (850 pieces to go)
Colour in some beautiful mandalas (fine detail sucks)
Binged Foxtel and Netflix to death
Diversion therapy required!
I think the ‘no driving’ rule is the biggest killer when you’re normally a super independent person! I’m usually the one offering help and assistance to others, and now I need it from them? Dammit! I have to suck it up!
The family may be starting to get a little frustrated with my inability to be still! They are desperate to entertain me, with offers of movies, outings etc… but I’m just not up to it! A 20 minute trip to the local shop makes me so tired! I’m thinking it might be a sensory overload thing post brain op.
Anyways, as for actual healing? Still hovering about 60/40. Not great, but not awful. On a lowered dose of the steroids, but thinking I need something more than Panadol and ibuprofen for pain!
Laters for now! I’m off to find some entertainment after boring you with this post.
So after re-reading the last update, I thought I’d better flip the script. I was obviously not feeling well and that shone though. How effing depressing was that!
Week 4 wrap-up…
Post the drama of an emergency department visit on Christmas Eve, Christmas Day turned out to be not too bad! While I wasn’t 100%, I decided to throw away the negativity and self pity and focus on enjoying time with the family and eating lots of food! The plan worked and I had a good day.
With a small attitude change, I was more future focussed and stop wallowing in the sea of sickness. YES! It worked!
The rest of the week got progressively better. Even more so after I started a new course of medication to help combat the CSF leak.
Steroids? Maybe I will grow muscles as well!
I’m also starting to get a little bored, which is a good thing. Wanting to go out and do small things is good! Still can’t drive for another 4 weeks so that sucks a little, but my family are doing a fantastic job as my personal chauffeurs.
I’ve also been graced with plenty of visitors. I love being blessed with fabulous friends and family who just pop around.. sometimes with amazing European Christmas baking (thanks Zoron). It totally breaks up the monotony of the day. There is only so much Foxtel and Netflix you can watch.
So all things looking up after 4 weeks. Happy new year to all!
What a week… I swung from feeling fine to “I can’t take this much longer”.
I was pretty much okay until the most horrific and violent vomiting started mid-way through the week. I could barely eat, or drink more than a sip of water, without hurling (which caused the most excruciating pain in my head and neck).
This went from bad to worse on Christmas Eve, when I was rushed to the Emergency Department. Not only was I very sick, but I was upset about missing my family’s traditional Christmas Eve celebrations. I had never missed one in all of my 46 years! Small consolation that my kids were going to make it.
The hospital visit was interesting to say the least. The speed in which I was attended to was beyond belief. In no time, I had a doctor, was on a drip with fluids, and was pumped with intravenous nausea drugs (getting a pillow was tougher, but whatevs, I wasn’t throwing up). My amazing neurosurgeon has called the hospital and told them the low down and everything sorted before I got there.
I was sent for a MRI and low and behold I had a small CSF leak, which I have now learnt messes with the pressure levels in you head! #dammit
What’s the fix you ask? Believe it or not… caffeine and time.
The amazing on-call neurosurgery team came to see me to give me the news. Head honcho had had a convo with my neuro guy and came up with plan. Do not intervene surgically and give my brain time to equalise the pressure naturally #jawdrop. In addition to time I was told to drink more caffeinated drinks which helps low pressure in the head! #lovecoffee
How long is that gonna take? I ask… The reponse concerned me little – a couple of days up to 3 months, but there was nothing else they could, or should, medically do at this stage. They gave me all the assurances in the world that I was going to be alright, that it was completely normal and very common. I admit, I instantly felt better mentally and emotionally.
They gave me a choice… stay overnight for observation and more fluids, or go home and spend Christmas with the family. I took option two. I was desperate to see my kids, Mum & Robert, my sisters, my brother-in-laws, and my nephews (and their partners) on Christmas Eve! YES – MADE IT!
Big shout out out to all the hospital staff, doctors and nurses who give up their time with their families over Christmas, to help people like me.
BTW… I can’t believe how demanding, rude and obnoxious people can be in emergency… FFS!
So it’s officially two weeks post op, and I have conceded that I need a lot of time to heal from this baby!
While it’s fantastic to be home, there is no way I could manage by myself! I woke this morning to revolting nausea and a biartch of a headache…
I was glad I managed to make it to Ryley’s 18th yesterday (although I now know my noise tolerance levels in relation to small children and singing/dancing Santas). I also caught up with my Mum, Robert and Michelle today. I’m glad they understand that I can only manage short visitation periods… it was so nice to spend some time with them.
As it’s two weeks post-op, I was scheduled in for a check up with my usual doctor. Other than her ‘make me feel good’ comments about how much weight I have lost #sixdaysnofood, she cleaned my wound, but it also f’ing infected! So back on antibiotics I go – yay more drugs added to the constipation cocktail I’m already absorbing everyday… looks like I need some sort of jungle juice to help sort this situation out #gross.
Aside for the new drugs, I must bathe my head in salt water twice a day (not sure how the hell that’s gonna work). Plus, I must sleep only on my side… yep cause I can control that when I’m asleep,
Anyways, that’s it for now… we’ll see how the rest of week three plays out.
It’s the last leg home – Albury to Canberra… Doesn’t sound huge but driving post-op is not very pleasant!
I could hardly sleep last night, too much jiggling in the car yesterday and a flat bed were not the ideal recipe for sleep… thankfully the amazeballs hubby masterfully propped the hotel bed up so I wasn’t forced to sleep flat. God I love that guy!
I still awoke to the most revolting nausea and had a bit of cry in the car… maybe I just needed breakfast?
Stopping at a little place called the Early Bird Cafe on the Main Street of Albury. The owner is an absolute character, his bright and sunny outlook instantly lights my morning up! Nothing like a guy in his mid 40s confidently singing Spice Girls to ask a customer if their ready to order… crack up. But now I have an ear worm “So tell me what you want, what you really really want”…
Time to make tracks!
I believe I now know every rest stop between Melbourne and Canberra… my bladder cannot see a sign without squealing in joy! I dare not make it past one! This is freaking ridiculous! After a little googling, I have worked out that frequent urination can be related to brain or spinal surgery… possibly an answer? Hopefully not a long term issue.
Maccas in Yass, another quick pee and we should be home in no time! Looking forward to seeing Miss Emily and the rest of the girls (Charli, Bella and Willlow)
Also looking forward to my own bed, which in hindsight was the Best Buy ever.. fully adjustable! #psychicme
We left Epworth Richmond at 9:00am… I hate Melbourne traffic! The continual stop/start driving was killing me and I instantly felt sick. I’m hoping a Endone/maxalon cocktail will knock me out for a few hours in the car. Just need to stop to get them out of the boot (smart packing hey).
Just our luck the Hume was closed due to flooding… had to take detour through the gorgeous little country town of Yarrawonga…
The detour road was a little bumpier than expected, so we decided to have a little pit stop to stop my brain from rattling around in its new cavernous space. I was super happy to see a Maccas, it had been 11 day since my last junk food session.
I’ve decided to wrap a a scarf around my head, I think I may be freaking the locals out! Not like a hijab or anything, but more 1970s hippie style… not sure which one would actually scare them more.
After another 2 hours on a backwater bumpy arse road, I literally teared up when we checked into the hotel… I just need to be still! I’ll send Ninja hubby out to seek sustenance later – it’s time for this chick to catch some zzzzzzs.
Well I managed to score 2 hours of sleep. Now I needed to eat. I considered sending the ninja man out to source something, but I wasn’t happy that he’d have food handy and I’d have to wait. Not that he’d eat without me, but yep I was starving. We found a local Schnitz in Albury…. that’ll do donkey, that’ll do!
It’s been a long 10 days residing in a hospital more than 8 hours away from home. But I can taste the freedom. The remaining 25 staples haven removed and I can head home tomorrow morning. #happydance
While we’re travelling by car, as I’m not allowed to fly yet, we have to take it two legs. So we’ll stay in Albury Friday night, get home Saturday!
I can’t wait to see the kids, the dogs, the cat and my fabulous mum and sisters.
First job when I get home is to start looking for a cleaner. I am definitely clear on what I cannot do for a while.
While not even close to 100%, I was starting to feel a little better each day that went past. I had a reasonable nights sleep, I think is because Mumma Maria (awesome nurse) tucked me in.
Unfortunately I woke to the worst vertigo ever at 2am. Maria attempted to help with drugs, but it didn’t work. All I could do was try and sleep upright and take whatever zzzzzs the sleep gods decided to throw my way.
After about three and half hours I threw the towel in on the battle against vertigo. I decided to try diversion therapy instead. So I got out outta bed, make a strong cup of tea, flicked on a movie. Brekky was served at 7am. After downing that and taking a super long hot shower… I decided to try sleeping again. It worked!!! Another a blissful hour were thrown my way. #airhifive
Wednesday – Day 9
While I was nowhere near my usual perfect specimen of health, I was definitely on the mend. I felt inspired (hence the blog), I had coast house designs floating through my head and I had words for possible my sci-fi trilogy dripping from my tongue.
Nothin much to report today.. still riding the paid wave and I’m gonna try some sleeping tablets tonight!
While Saturday ended on the good side, the indigestion I awoke to at 2am was ridiculous to say the least. It’s the f’n OJ… knew it was too good to be true! Going to take some time out from drinking the fiery heart of Satan for a little while. Two shots of gaviscon (blerrgh) and 6 hours later… the bubbling bile from hell dissapated! Phew!
All seemed well again! That was until 12pm… the worst ever frontal lobe pain I have experienced launched itself into my cranial cavity! Al the lights were switched off, blinds drawn, all noise removed, and some heavy drugs were injected into my cannula. About four hours later I awoke from the pain relieving sleep, to find a super nurse on standby with more drugs #fistbump. She was also there to change my dressing. One sample removed during this process.
I also forced my hubby to take a photo… he was not happy! Not quite sure I’m ready to share that yet!
27 staples left to go! Yep that’s all I can say!
Monday – Day 7
Let the itching begin, but don’t scratch! Aaarrggghhhhh! While annoying, it’s a good sign that things are healing. I’m cool with that.
Had at least two, four hour blocks of sleep last night – this makes me a very happy lady. However, to dampen my joy, the headache is back!
Spoke to doc man, were going to increase the base load of slow release meds so I’m not chasing pain relief continually. Got to get the pain management under control and off this roller coaster.
Managed to get two staples removed from the side of my head tonight – so just the 25 in the zipper to go!
I have worked out that 15 minutes of effort requires about an hours rest.
I turned some magic corner overnight! I sorta thought I wanted to eat something other than ice. Ninja man was excited!
I think I dissapointed him. While I felt hungry, I only managed to eat a bite of a sandwich. I also needed two hours of sleep to digest it, so the small celebration was very short lived. However, I developed a new love of orange juice…
Day four bought me more moments of lucidity, I could actually form sentences, as applied to communcating with blinks and nods. I also managed to have a brief conversation with both the kids and my mum.
I also had more strange dreams/nightmares and moments of totally tripping out! I saw the strangest things in my room:
There was the constant banter between the lettuce headed suit guys, who were trying to con me into a business plan (for what I don’t know).
There was a giant elephant and his bear companion hanging out in one corner, just staring at me.
Random mandalas appearing on walls and the ceiling.
Neon blue and green lines dancing around together.
Needless to say – I think it was time to change my meds. This shit is too weird.
Saturday – Day 5
Other than the 4am bout of indigestion (bought on from excessive intake of orange juice) day 5 was pretty good! My doctor agreed to change my meds immediately.
I ate. I actually participated in consuming and enjoying food again. I managed to watch TV and keep my eyes open with any matches.
Spoke to both of my sisters and caught up on some goss. Also managed to touch base with my besties and get the down low from work. #feelingconnected
The pain in my head became more obvious through the day. Probably my fault as I requested a change in meds. We’ll work on getting the pain managed.
I remember waking up in ICU… I heard my neurosurgeon, glimpsed my hubby.
The low down was, my surgery didn’t go quite to plan. My neck muscles were very thick which caused access issues and made the surgery take longer.
I felt awful and was in and out of consciousness. I can’t believe they gave me the job of managing my pain through a little button. I can’t even keep my god damn eyes open (insert expletive here).
The rest of day one was a blur, but I clearly remember the neck pain from the excessive throwing up. Faaarrrkkkk!
I remember them asking me… “Do you feel sick?” “Do you want to try different pain relief, that may not make you as sick?” Seriously WTAF! I can’t keep my eyes open, can barely communicate… I’m not in the right way to make a massive decision like this! All I could manage was a simple nod, hoping they would interpret that as do what you think. They did something, and It was better a little better after that.
Wednesday – Day 2
Still in ICU… according to my research I expected to be going to the ward early in the day. Based on the way I felt, I wasn’t 100% comfortable with the notion.
As it happens, my assumption was dead wrong. My veins had shrivelled up and died, or I left them back in Canberra, but they can’t let me go up to the ward without blood tests. I’m cool, I’ll hang out here! Wait, okay, you will pull all stops to get blood? SHIT!
I decide to just lie there, half conscious while every man and their needle has a go. I remember multiple pin pricks, there was an ultrasound machine whipped out at one point, they even tried my left foot (ouch is an understatement). I now have track marks that would make a junky mum proud!
They bring me food. Seriously? I can’t even open my eyes, let alone my mouth. I beg for ice chips. Super husband is there with a spoon full immediately. He quickly developed ninja ice feeding skills!
I hear him talking to the nurses and doctors… they’re telling him to take a break – do they not realise the stubborn love of my life would not leave my side. I giggle subconsciously at their efforts though.
Thursday – Day 3
Still hanging out in ICU… I feel safe and secure. The staff and crew down here are freaking amaze balls. Still struggling to keep my eyes open, can’t eat, ninja iceman has my back though.
I heard that I would go the the ward later that evening… while not 100% super comfy with some else telling me I’m good to go, I trust them.
Late in the afternoon, I was transferred to the ward. Level 4, Lee Wing. This is where I realised how demanding I can be! But then again, someone plugged me into to like 100 machines and I’m bedridden. So yeah soz, if I could get outta bed and do it myself I would.
Ninja hubby is at my beck and call – there is constant supply of ice chips. He valiantly tries to coax me to eat, but nothing interests me.
I’m pretty sure the recovery will be worse than living with worsening symptoms, right?
Maybe the neurosurgeon got it wrong and I don’t need this?
What if my hubby does get here before they take me down?
What if something happens and I end up not quite myself?
What if I die of complications and I don’t get to see my kids again?
I hope Michelle will write my eulogy..
FEAR, FEAR, FEAR!
Hubby made it… YES! They even let him walk al the way into the pre-op ward before the actual event.
As the time drew nearer, I gave him a quick kiss, made some flippant comical comment to keep him calm… then they wheeled me away from him and I lost my shit! The blubbery, snot monster had come out to play. Thank F he didn’t see that. Wasn’t really oozing confidence!
As Tone Loc would say in that weird arse voice of his… “Okay, let’s do it”.
Arrived at Epworth hospital in Richmond. Nice… pretty flash! Checked in early as I was the first cab off the ranks in the morning and I needed to have a neuronavigation MRI scan in preparation.
I was not anxious at all. I had an uber-nice private room with a view over the city. I’ll just watch the movie channels and tweak my extravagant dinner and evening snack request while I waited for the scan.
Headed down for the scan.. (sorry ward clerk – I’m walking). This MRI scan was not what I had expected.
I needed a cannula and contrast? Wasn’t ready for that.
Could not find a vein! Where were those shaggers hiding? Never been a problemo before…
Why is the #1 shaver out? Seven blue discs to glue to my head you say… hmm
What is the permanent marker for? Please don’t draw a penis on my cheek! Phew.
Why does this look like someone cut my devil horns off?
Back in my room, the anxiety set in, in a major way. I was sweating, had a huge ass pee event, and then could not sleep. The nurses on level 4 Lee Wing were fan-bloody-tastic. Big shout out to Tam who was a great comfort that night and offered me so much moral support.
Upside – at least I won’t need to shit post surgery.
So the date was locked in, 4 December 2018. I remember freaking the F out and trying to find as much info on risks and recovery time as possible. My major hurdle to overcome was giving up smoking!
While a never-been smoker won’t understand why smokers make such a fuss when giving-up, there are others out there with addictions who will.
Although I planned it to the max, had reading material ready, new things to occupy my time, Apps to play with… I was super stressed about failing! Only once in my 30 years as a smoker had I attempted to give up. I saw smoking as a key part of my persona. What if I wasn’t cool anymore when I stopped smoking?
Yes, deep down I knew smoking wasn’t actually cool, but when you grew up in the 70s and 80s it was! We were constantly bombarded with images of trendy and beautiful people smoking. It was advertised on TV, public transport and the tobacco companies sponsored all the major sporting events. But still yes, older and wiser now, I realise it’s not cool to smoke!
So how to do this… choices, choices, choices. Would the new craze of vaping be okay instead? Ruled that one out early as it was a big fat NO from both the neurosurgeon and anaesthesiologist #bugger.
How then? Mind-altering drugs, cold turkey, cutting back with gum and patches, or do I try hypnotherapy? As I can get a funny tummy with any new medication, could foresee epic failure with cold turkey, and probably left my run a little late to try cutting back through patches or gum, I elected for the hypno route.
Had a great recommendation from Cathy at work and booked in… the little pessimist inside me was certain of failure. This was probably as I still wasn’t keen on the idea of surgery and failure at this would mean the surgery had to be postponed. On the flip-side, my family and work colleagues were certain of success. Little Miss Viv also decided to be my quit buddy and give up at the same time. That little firecracker always has my back!
So I went, had a chat with a super nice grandfather type dude, in his cute little old house in Canberra, and I remember the whole conversation. Imagine my surprise when it actually f’ing worked! If you’re looking for a hypno dude, contact me and I’ll send you his details.
Also, the My QuitBuddy app inspired me everyday. I can’t believe I’ve now been smoke free for 55 days, have saved over $1,500 already, and feel pretty damn healthy in the lung department. Who woulda thunk it?
So I decided to undergo surgery… it only took me 8 months to finally say “yep, let’s do this!”.
Why 8 months? Firstly, I felt like I googled to the ‘enth degree and there was nothing more for me to research. Secondly, it was September and Chiari awareness month, my FB feed was smothered in information. Lastly, my biggest excuse of ‘work’ was starting to no longer be a valid excuse.
I had the best team in place a person could wish for (all self-selected) and excellent service delivery staff to keep the beast moving forward. I could see definite clear space ahead in which to take some time off, knowing the programme would be left in more than capable hands. Man I love my team – they rock – and they are my second family,
On top of this, I was becoming acutely aware of every small symptom or change and was utterly convinced things were getting worse. So I contacted the neurosurgeon to get the ball rolling (as long as it wasn’t my head).
A new referral from my GP and the neuro surgeon was more than happy to hear from me. A new MRI was ordered (god I hate those things) and the appointment was made.
Surprise, surprise.. my condition was worsening and the surgery definitely required decompression AND a C1 laminectomy #dammit.
The fear of having part of my skull removed, and possibly part of my C1 vertebrae, had me spiralling into instant denial.
My fantastic Neurosurgeon was not at all pushy, but was obviously concerned about my complacency. I told him I needed some time to chat to the family about what I have found out about my condition. I also needed to do a little research before deciding to go under the knife.
My trusty sidekick Viv, was more than happy to co-research (google doctor) with me, and always added a little positive spin.
After getting over the initial shock that I, of all people, needed massive surgery, I dusted my pants off and threw myself into a massive project at work. This gave me plenty of time to make excuses such as those listed below and delay the decision:
“the timing’s not right”
“can’t leave my peeps”
“I’m not ready to give up smoking”
“the family won’t manage without me”
“it’s a logistical nightmare to have surgery interstate”
In hindsight, all were ridiculous. The world does not revolve around me!
While only diagnosed in September 2017, my symptoms started in my early 20s (about 23 years ago). My symptoms ranged from a severe frontal lobe head ache when I coughed to benign positional vertigo when lying in bed.
On top of these two symptoms, below is a list of the other symptoms I believe can be attributed to my Chiari I malformation:
neck pain
shoulder pain
balance problems (vertigo)
gait poblems (always seemed to veer left when walking)
slight numbness on outside edges of hands (pinkie to wrist)
The misbehaving brain decided to switch from low pressure to high pressure and they ended up having to install a VP shunt. Instant relief from the persistent and never ending headache and associated vomiting. Gonski! It felt like a miracle! This is great, and I can go home…
It’s probably timely to thank the amazing doctors and nurses (and trainee nurses) at the Canberra Hospital. Damn they looked after me physically and mentally over the last month! I must work out a nice way to thank them!
I’ll update you all when I know what’s going on..
The docs advise that if CSF could get out, shit can get in and it was time to pull the drain and stitch up the hole! More fun! Let’s do that!
Brain hack 