Category : Personal
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.
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
This 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