Monday, 8 July 2019

It's totally fine.

My brain is fine. 

The scanxiety came on strong recently; it always does around this time of year, because April/May/June is when I always seem to get sick. I was both depressed and stressed for the 10 days between scan and consultation with my wonderful neurosurgeon, partly due to the aforementioned Time of Year Fear, but also because before the scan I’d got blood test results over the phone from my GP, that my endocrinologist had requested after our last appointment, and they indicated my Cortisol (stress hormone) levels were high, and my Thyroxine (thyroid hormone) was normal BUT working really quite hard to be normal. After I got these results, I hung up the phone and immediately dropped into an old familiar resigned state; the ‘something’s wrong, they don’t know what yet, but it’s definitely something bad’ vibe.

But, no. My brain is fine. 


(Photo: Rebecca Brooker; jumpsuit gifted from JOY)


My neurosurgeon told me he’s happy with the scan. He even said it was ‘great’; that the tumour seems to be behaving itself and staying put at just shy of one teeny centimetre wide (!) in its awkward spot between brain stem and cerebellum, plus there’s no sign of inflation from the attached cysts. (I’m writing this in what must be the most tragically simple terms; I’m sure it’s a much more complicated situation and I can only handle the most dumbed-down version of events) Mr B then told me he’d be confident in making my scans annual now, instead of every six months. One scan per year, for however long he wants to keep an eye on me (which he’s told me before, is the rest of his time in this job).

That confirms it, really and truly. My brain is fine. More than fine. It’s ‘great’!

So, riddle me this. Why don’t I feel fine? Why do I feel the furthest one could possibly get from ‘fine’, in my mind and body?

There are so many possible causes of this stress and depression. I have two jobs, first of all. But I love both of those jobs. They don’t stress me out when I’m working a shift. Cross that one off the list, then. I have enough free time, really, more than most would when working two jobs… but then I fill every last second of that free time up with activities, odd jobs, extra commitments and social engagements. I try desperately to keep at least one day in my diary totally blank each week, but I just can’t do it. I have to schedule in life admin, coffee dates, sleepovers, day trips, nights out, nights out-out (although that’s a rare one, thank goodness) just to make myself feel like I’m doing something. Because in all honesty, if I keep a day free and actually by some miracle stick to it, I then go utterly mad from the moment I’m done having a nice leisurely breakfast after sleeping in until 8am. I am suddenly gripped with the terror of doing nothing.

I’ve spoken before on various platforms (and to my counsellor, ha) about an unpleasant side effect of my health problems being my constant need to be doing something, and the overwhelming and eternal need to do something Big and Important with my life, like write a bestselling book or travel to every corner the world or become famous or start a charity/ movement/ support group or… what? What will happen if I just live an arguably normal but a little more than mildly eccentric life?

Well, if I did just that, then all the medical professionals who have kept me alive and comfortable all this time will be a waste. What did they save me for? They could have helped someone who would do more for the world, surely. They will definitely be heartbroken if they never get a shout-out on national TV, or a dedication on the first page of my legendary novel, or a fancy engraving of their name in the entryway of the hospital I build that will help every person in the whole entire world diagnosed with a brain tumour.

I know this is a ridiculous notion to have in your mind for even a minute, let alone every day of your life, forever. But I can’t make it go away. And it can make me terrified of life and living, because I will never be satisfied with what I do, because it’s never enough.

But then, oh god, here it comes… I also sometimes want to have something wrong. If only because then I can stop worrying about what to do with my life. I can put off making big decisions a bit longer. I don’t need to further my career, save up for a property, tick boxes on this list or that list, as long as something is wrong. I see all the possibilities, the open doors all around me, the paths I can take – and I am so scared that part of me wishes it could all be decided for me, in the worst way possible; by being told I need more invasive treatment, another big op or a new, experimental procedure. 


(Photo: Rebecca Brooker; jumpsuit gifted from JOY)


I also really miss hospitals, some days. I told my counsellor this, blushing, near tears – and they said ‘that’s okay’. We unpicked it a bit; could it be because I felt properly taken care of in there? Is it the kind staff, the fluids and drugs being pumped into me, the regular check ups and tests? Or is it because as long as I’m in there, life is in limbo – I have no responsibilities and nobody needs me or expects anything from me, least of all big life decisions to be made…?

My brain is fine. My mind is quite messed up. And my body is tired. So, so tired. 

I do catch the odd spot of sunlight. As I said before, both my jobs bring me untold happiness. One is endlessly fun, interesting, intense and can be challenging at times; the other is peaceful, fascinating, warming and rather magical. Both are enormously rewarding. I actually wish I could shout about them more on social media, but I've been burned doing that before, and am actually quite enjoying the privacy. That's also why I haven't been treating followers to photos of my boyfriend's face (pretty as it is). Oh yes, he's an enormous sunbeam in my life right now. A sunbeam made up of sparks. Bright and colourful and crazy sizzling sparks. 

Those are the bigger things. I also love being stirred from sleep in the night by the cat purring in my ear, and waking up to him reclining like a king in the patch of light on my duvet, snoring softly and contentedly. I enjoy getting to work at least half an hour early, so I can sit comfortably with a coffee and read my book. I take pride in my skincare routine. I treat myself to the best vegan toasties in town, at least a couple of times per week. I have been dressing more eccentrically lately; more like me. I'm making changes where I feel I need to – recently I had a meltdown in my bedroom because having so much STUFF packed in there was making my brain feel full too, so I took all the artwork off my walls and cleared my noticeboard completely. I packed away the books displayed on my bookcase that I have read and want to keep, leaving only the ones I am yet to read, and most eager to... the shelves are still heaving, to be honest. But it feels better. 

See? My mental health is a work in progress. I'll get to a good place, eventually. I have before. I just need to remember the way. 

How do I end this post? I'm open to suggestions. I think I'll stick with my usual sad sign off: bear with meI'll be fine. 

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