A porter arrived to take me for the MRI early on Monday morning, before the scheduled appointments started. Several of the ceiling panels in the neuro-imaging waiting area have been replaced with backlit pictures of meadows and flowers, which is a pretty, nice touch for people being wheeled in and out. Perhaps not *quite* as distracting as it’s intended to be, but A for effort.
Claustrophobia is always mentioned in the same breath as MRI scanners, but you’d have to have it pretty badly to be scared. There’s more than enough room to turn over and go to sleep were it not for the fact you have to stay still. You could probably fit two people if you were fairly good mates. The radiographer told me the scan would take about 12 minutes, which was simultaneously vague and precise. It may not be the case at all hospitals, but at the RVI they give you a set of headphones and a pair of periscope glasses to wear during the scan. At the far end of the MRI tube was a TV suspended upside down from the ceiling, showing a David Attenborough documentary, which you see the right way up with the periscope glasses. Hang on, maybe the telly is the right way up and standing on the floor? That would make more sense. Too confusing. So while David calmly explained the role of play in the development of leopard cubs, the scan began. The MRI makes lots of banging and clacking noises, but it’s not particularly disconcerting. Half way through, the couch was slid out so some contrast dye could be injected into one of the IV ports still dangling from the crook of my elbow. Then back in for more banging.
Once it was done, the radiographer asked how I’d found it. “Fine” I replied, “but it was a bit weird when the bed started shaking towards the end.” “The couch doesn’t shake!” she replied, “it’s just so loud, it must feel like that. It’s always so interesting to find out how people experience it.”
Back on the ward, I wondered when I’d be allowed home now the MRI had been sorted. Surely that was the only reason still to be in hospital? Er… no.
Steven the ward doctor arrived not long after. He drew the curtains around my bed, and introduced himself. We shook hands and he adopted a crouching position so he was on the same level as me sat in the high backed chair next to the bed. He looked so damned uncomfortable. It’s literally only occurred to me as I type this that maybe it wasn’t because he was feeling the burn in his hamstrings.
Steven: So, we have the MRI results, and I’m sorry to say there is a growth in your brain. That’s what’s been causing the seizures.
Me: Oh right. A growth. [The penny has 0% dropped. I genuinely think at this point it could be something like a bogey gone astray.]
Steven: Generally in these situations, I think it’s best to err on the side of pessimism.
Me: Yes, of course. *Adopts pessimistic, Princess Di type face* [Penny inching towards 10% dropped. Why are you pessimistic Steven? We have the answer now. Please just sit on the bed, you look so uncomfortable crouching down like that.]
Steven: All the new abnormal MRI’s are reviewed by an experienced multidisciplinary team (MDT) made up of a neurologist, neurosurgeon, radiographer, neuro-oncologist, specialist nurses and other relevant specialists on a Friday afternoon. They may be able to identify the growth just from the scan, and you’ll be contacted on Friday or early next week about the next steps.
Me: Ooh yes, it’d be nice to know what it is. Please can I have a look at the scan? [Penny suspended in mid air, defying all the rules of gravity]
We head over to Steven’s laptop to look at the scan, which is made up of loads of photos of horizontal sections of my brain, which you scroll through to get a picture from bottom to the top of the skull. You know when someone shows you a picture of their pregnancy scan, and unless something obvious like the baby’s nose is clearly visible, it’s just a big dotty grey mess? Yeah, this is the same, and it soon becomes clear that beyond ‘the skull’ and ‘the brain’ neither of us know what the heck we’re looking for, but nor are either of us about to admit it. It just looks like a black and white photo of a load of raw chopped cauliflower in a bowl. Steven scrolls back and forth vaguely gesturing at some grey bits (it later becomes clear that none of them are the tumour, but to give Steven his credit, this is not his specialism, and they may have been swelling caused by the tumour). I nod gravely and stroke my chin. We go back to my bed.
Steven: You are welcome to stay here as long as you like. If you’d prefer to go home I can sort the paperwork for you to leave today, but if you want to stay and wait for the results from the MDT, that’s absolutely fine.
Me: Thank you, that’s very kind. [Penny moving very slightly downwards. Stay all week? I thought they didn’t like people being in hospital if it’s not necessary, and I’m obviously FINE. It’s just a growth!]
Steven: If you have any questions, please do let me know. If you want to talk again later, or want me to talk to your husband, just shout. Nice to meet you, and I’m sorry it couldn’t have been under happier circumstances.
Me: Oh yes, you too! Take care. Cheers Steven! [Literally no bloody idea of what’s about to hit]
He pulls back the curtain and heads off to see his next patient. Dot is sat in the next chair, staring at me open mouthed, her face as white as sheet. “Oh flower…” she says. “What? Don’t worry Dot, I’m fine!” Dot, who thinks Lucozade is a suitable drink for a diabetic, gets it. I still don’t.
I sit on the bed, slightly dazed. What could grow in your brain that is not actually brain? Why did Steven say all those things about pessimism and staying all week and circumstances? What would you call a thing that grows where you wouldn’t expect or where it’s not supposed to? Like someone pressing play on a paused video, that shiny penny drops to the ground at an alarming speed.
I text A and ask him to come in. He’ll tell them that this is just silly. I haven’t got a brain tumour. I’m *fine!* A arrives suspiciously quickly and Steven goes through it all again with both of us. A admits he suspected this from the first moment he heard about the seizure. I truly didn’t, but don’t know why. What on earth did I think the MRI was for? Why on earth did I think the doctors reacted so quickly to my seizures and keep me in for monitoring? No idea. A brain tumour will do that to you, apparently. As soon as a heart attack and stroke were ruled out, I simply stopped considering any other negative outcome and assumed it was epilepsy of a type that could be easily managed. I. AM. FINE.
Reasons to be grateful today:
- Still no seizures. It’s been 2 and a half days now.
- Steven has been lovely. He may have tried to break the news to me a bit *too* gently, but too gentle is better than too abrupt, isn’t it?
- Bless Dot’s heart
- A is going to sort all this out and everything will be fine.
I love your optimism – optimistic people live longer anyway! You need one of those signs like they have at workplaces – “Today there have been  days with no seizures”. Plus the associated paperwork to fill in if one happens, complete with learning opportunities etc. Maybe this is just my gaff. I’ll shut up now.
Lots of love as ever!
It’s more like denial than optimism, but thanks anyway Karen x
I’ve had about 6 MRI this year now, know exactly what you mean about the ‘vibrating’, hope your earplugs drowned out the noise better than mine seem to!!
Hi Chris, thanks for your comment, which has led me to your blog and then on to Anna Swabey’s. We seem to have started from the same point – wanting to keep a record to sort our thoughts out, and needing a more human story of what this experience is like. Best of luck, I’ll be following your journey.
Yes the constant pursuit of catharsis is what I call it 😊 best of luck to you too and thank you 😊