Instalment 5 of my journey with Clusterfluff the brain tumour
We have lift off. Woot!
My “W. Stealth Guided Craniotomy” will be on Tuesday 5 December, 2017.
Tuesdays rock! I was born on a Tuesday. Hopefully, I won’t die on one. Mwah ha ha. Do I sound a little manic? I am!
Said auspicious occasion will take place at Monash Neurology, Clayton. Op will be performed by the head of neurology, Mr Andrew Danks. Be gentle with me, Andy, it’s my first time.
Once Clusterfluff has been excised, and my right hemisphere eases on back down the road, supposedly my intelligence or creativity (both?) will expand exponentially and I will be able to interpret all episodes of The Night Garden and Teletubbies.
Before that, there will be more tests, scans etc. etc., which is good, because I know there’s New York Cheesecake in the hospital cafeteria. Is it bad I want to sit and eat a whole tin of Milo?
For now, all is still well. I’m functioning and working from home, from the library, from the loo (that’s where I wrote my #8WordStory), and I’m scheming ways to milk sympathy: A Go Fund Me page for a house made of chocolate, more kittens, a sausage dog.
Instalment 4 of my journey with Clusterfluff the brain tumour
I want you to know I’m not scared, and I don’t want you to be scared for me. It’s surreal, yes, but on the whole, I’m balanced, calm, positive. I’m also getting out of doing step classes because of my current fuzziness. Do I need an excuse? Nah.
Bunnies are cute. Enough said.
I just found out that my #8WordStory was selected by Queensland Writers Centre to be a part of their billboard campaign. Excitement! Spewing I missed getting a pic. Here’s a replay: “Mondays were reliable, always showing up. Unlike Thom.”
I’m breathing, breathing and absorbing all the healing energy people are sending me. But this week, one incredible person made me cry big time. Ciera, a US edibuddy I’ve not actually met in person, offered to cut off her stunningly long, luxurious hair and send it to me from across the seas, so I could have a fabulous wig after my operation. OMG! Who does that???? Of course, I couldn’t accept – I’d rather witness and enjoy that beauty in its rightful place – the same way I admired a couple of white butterflies flitting amongst nasturtiums, on my morning walk today. Fragility is stunning. The unbearable lightness of being.
I’m finding it easy to be blown away. When the internet and our televisions inundate us with bad news, ugly news, and suddenly we’re brought face-to-face with something so beautiful as the human spirit, it’s sometimes hard to process. Overwhelming. But it’s there. Always. We need to remember that. Especially when it involves friends dropping in with giant plates of freshly cooked brownies. Thank you, Sue M.
If I’m honest, I’m occasionally feeling teeny tiny bits of angry, for no apparent reason. (Tip: don’t ever try to hide my Peanut M&M’s, bitch!). I suspect this is just me constantly fighting the meds to stay clear-headed.
Someone else (looking at you Sean ) sent me a loving message suggesting I didn’t need to focus on comforting those around me, to place that energy in self-care. I know this is true, but honestly, comforting others, is ultimately comforting myself. And I’m down with setting boundaries when I’ve had enough.
So it’s okay. Sometimes there are no right words, and a heart emoticon is the perfect message to send.
Hearing success stories from others who have been through, or know someone who has been through, similar situations, has also been a huge comfort.
I’ve been watching more brain surgeries on YouTube. Ewwww? Not at all. It’s fascinating how simple it looks. Shave, cut, bust that sucker with ultrasound, pull it out, stitch, staple. Job done.
I think the hospital food will be the worst part. That and the need for Coloxyl. TMI?
On a figurative level, nothing has changed: I’m not any different today to how I was last week, last month. The initial (over)reaction has passed. If a fuzzy head is my only obstacle, I’m winning.
On a literal level, I have the best possible scenario. And even if things don’t go to plan, it will be beyond my control, so I’m just letting life roll – today with wine, cheese and music at the gorgeous Vines at Helen’s Hill, Platters on the Lawn. Come along, if you’re free and enjoy the divine views.
Instalment 3 of my journey with Clusterfluff the brain tumour
Today I got new hair and my very own fabulous poem from my clever bro-in-law Peter Collins. The anti-seizure drugs are kicking in and making me drowsy but I managed to fight through to get my mailer subscriber list happening.
New Hair: My gorgeous friend and hairdresser of many, many years, Lucia Motta Miko, came over to my house and gave me a cute short cut, to pave the way for the big shave. I love the new look, and I’m thinking I can probably even do a comb-over to cover the scar, LOL!
PLUS: How awesome is this poem, personally scribed for me by my bro-in-law Peter Collins. Again, I’m feeling overwhelmed by the amount of love and support I’m being given.
CLUSTERFLUFF THE MAGIC DRAGON
Clusterfluff the dragon,
In CSF he swam,
Housed within a cranium –
Didn’t give a damn.
One day a passing MRI
Found where old Fluff ought
Not have been; in the dark,
Eavesdropping on thought.
Clusterfluff the dragon
Lived in a head
Frolicked in meninge mist
On brain juice he fed…
Little Neuro Surgeon
Said that you’re in luck
Haircut here, small hole there;
And off Cluster can fuck.
Peter Collins is a social activist and published poet. His poems are regularly featured on the Blackfulla Revolution Facebook page.
Instalment 2 of my journey with Clusterfluff the brain tumour
Today Chris and I met with the neurosurgery department.
Not too encouraging to arrive and find they weren’t expecting me at admin. But one look at my referral and they said, ah yeah, don’t worry, we’ll make sure we fit you in. Apparently big Clusterfluffs bring benefits. Only had to wait an hour. Goodo. And my case will be handled by the head of the neurosurgery department. That’s service for you.
The session went seamlessly – the doc had received my scans digitally (so you really weren’t expecting me?). He was very patient and explained things well. Did some simple perception tests – close your eyes, what’s this object I’ve placed in your hand? What numbers am I drawing on your hand? All good. Tested the strength in my arms and legs – both good.
We then examined the scans. He said the tumour was fairly large (er yeah, I can see that) and I’m at risk of seizures happening at any point due to the buildup of fluid and pressure it’s creating – it’s taking up about 1/8 – 1/4 of brain space that should bounce back once the tumour is removed. It’s in the right side of my brain which affects the left side of my body – more good news, since I’m right-handed.
He talked us through the risks: 1-2% of dying or other horrible things happening (who’s listening with those low odds?), up to 10% risk of stroke. When those stats didn’t scare us off, or the fact I’d have a complementary funky new hairstyle – 1/2 steampunk skinhead – he registered me for a Category 1 scheduled surgery – which could be anytime within the next 30 days. I’ll know the date within a week.
The scariest thing is the anti-seizure drugs I’ve started today. Side effects are anything from emotional upheaval to hallucinations. If I started yelling, weeping or laughing uncontrollably, you’ll know I haven’t become a peanut, it’s just the drugs. I’m not sure I believe Mr Garrison. Drugs are goooooood, right? I’m to wean myself off the steroids over the next 5 days – good because they make you fat. Priorities right? Ha!
If all goes well, the post-surgery hospital stay at Monash Clayton will be between 2-5 days. Then there will be a recovery period of between 2-3 months. No driving for next 4 months. Poo! But screw brain fog (apparently brains don’t appreciate things being poked about inside them), I’m counting on returning to work as soon as I get home. I’ve decided I’m going to recover quickly and that’s that. Who’s brain is this anyway?
The idea of bringing Clusterfluff home in a jar was knocked on the head. OH&S boring stuff. The bits they don’t send away for testing to ensure it is actually benign, and to determine its rate growth, have to burn baby burn. Hurrumph! Maybe I’ll hold a wake for it instead.
The growth rate is important, as there are areas around the meninges that looks a bit iffy – the tumour may also be tied up in a large blood vessel, so there’s a chance they may need to leave a little in there. And they won’t know if it has adhesions underneath it into the brain matter, until they start digging around. This will be followed up with regular brain scans and radiotherapy if necessary.
I’m now chatting with my current clients about how they would like me to handle their manuscripts – wait and see what happens or organise a backup editor for them – all sorted by the lovely Jo Burnell if need be. And Kathryn Moore is my personal taxi for now. Bless you both xx
I’ve had such wonderful support from my friends and family, it’s quite overwhelming. I think I’m more teary from the outpouring of love than the shock of the tumour.
Some crazy hat wearing will be in my near future – once the scarring has healed (risk of infection if cat-eared hats are worn too soon.
Overall, feeling VERY positive. I have an excellent prognosis and have been watching lots of relevant brain surgery clips on Youtube. It all looks pretty straightforward, and lots of people have been telling me success stories of people they know (oops nearly typed knew LOL) who have been through the same procedure.
The best part is, it’s not going to interfere with our planned January beach holiday. Yay! The blessings keep coming.
Instalment 1 of my journey with Clusterfluff the brain tumour
This year, for my birthday, the universe gave me an unusual present. Yup, kind of unique as presents go. Not the type of gift I’d normally (well, ever) choose for myself, but as brain tumours roll, it’s the best brand available: Meningioma.
While I’m digesting this news, I’m hanging on to the knowledge that this big fat gift has three big positives: it’s got a return policy at the best neurosurgery centre in Australia, Monash; the tumour location is easily accessible; and it’s benign. I’m not a religious person, I’d call myself spiritual, but, yeah, blessings.
I got the news late yesterday, after an MRI. The radiologist said the official report wouldn’t be ready for a few days, and I couldn’t get an appointment with my own GP for a week, so of course I opened the scans. And sat there thinking, I’m pretty sure that Motherf#cker shouldn’t be in my brain.
That, by the way, has been the response of most of my friends. The word F#ck has it place in times like these.
At that point my phone rang. My doctor telling me she was holding her office open to see me tonight. I’m now on steroids to reduce the fluid putting pressure on my parietal lobe The what?
Humour is going to be featuring majorly in dealing with this period of mental adjustment, and my future recovery. I just typed ‘the recovery’, but that’s distancing, and I need to take ownership of this so ‘my recovery’ stays. Ever the editor.
So friends, I welcome puns galore.
The best I can offer at the moment is: if I get my sense of smell back (it disappeared around 5-6 years ago), I might have to stop farting in my own presence. Bummer.
Chris has already suggested we come up with a pet name for this thing – meningioma is a bit of a mouthful. What? I can’t use Motherf#cker?
I laughed at his idea, but being a writer, I also thought, ooh, no, that’s an attachment technique. This Motherf#cker is an antagonist, not a protagonist. But then … Alan Rickman … Dexter. What’s not to love?
Feel free to make name suggestions.
Right now, I’m thinking something like Clusterfluff (my fave Ben & Gerry’s ice cream). Something so sweet and fluffy (there’s marshmallow involved) feels like taming the beast. And in the MRI pic, it does look kinda like a big scoop of creamy deliciousness. A friend asked if I was going to keep the tumour in a jar, at home. I’m picturing jars of Futurama talking brains. Is it a Mini Me?
So, how did this all come about? Headaches – ones that we have all the time and usually ignore, because we don’t want to be a complainer or a wuss. That, plus am I super efficient at avoidance. Nah. Don’t be stupid. It can’t be serious.
Then, sometime around February this year, I was at my writers’ group when I thought someone behind me had grabbed my hand. Nope. My thumb and forefinger were gripped with tingles and numbness, and there was a little tingling in my cheek. The hand numbness went away after twenty minutes or so. Nothing to worry about. I must have been imagining the tingly face thing.
The next six months brought frequent tiredness, more vague headaches, and stronger ones down the back of my head, which I thought were due to the bad positioning of my computer screen. Yoga and stretches helped.
September, the hand and face thing happened again. This time my hand spasmed. Again it went away quickly. Thoughts: Meh. I’m not going to be a hypochondriac.
Then a week ago, same again, only this time the face tingling and numbness was stronger and longer. Time to deal with.
They say, when you’re faced with a possible life-changing event, your priorities change. I’m looking at the dirty dishes on the sink and the cat fluff balls floating under the kitchen table. Do they matter anymore? To be honest, yes, they still shit me. We’ll see if that changes after I’ve met the neurosurgeon tomorrow.
A moral if you care for one:
Take care of you. And don’t be an avoider, like me. An MRI (in Australia) is free if you have constant headaches. You’re not a wuss.