2 Not a Nutter Yet

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2 Not a Nutter Yet

Category : Personal

Instalment 2 of my journey with Clusterfluff the brain tumour

Today Chris and I met with the neurosurgery department.

Peanut M&M Holiday

I may be a nutter after this but our beach holiday is still on.

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.

Annie & Chris – a bit bored waiting for our Monash neuro appointment

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.

Let’s do this!


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