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Meeting a neurosurgeon: brain tumours explained

The first thing I did is Google the neurosurgeon as soon as I had his name. It was terrifying. I mean, it was brilliant, but his bio is terrifying.

Point A:

“I take regular referrals from other consultants including neurosurgeons and have operated on cases that other surgeons have stated to be too difficult.”

Holy shit. What does that mean? What does that mean?

At this point, I had no information about my brain tumour apart from it was a meningioma. There were some notes in the NHS app from the scan consultant but it meant nothing to me. Despite using Google. It pointed it in the direction of the right side of my head behind my eye. It’s a type of tumour that is less terrifying than others, and slow growing, but it can cause a lot of problems.

The name used to catch me out. It’s a word that takes up the mouth, try it. Men-in-gi-oma. It rolls around from the back of the throat, pouts the lips and rolls back again.

It took me several attempts to get it right. I don’t think it fits the monstrosity it signifies. But, it does; it sits in the menses, on top of the brain, squatting and compressing brain mass.

Lots of people in support groups say don’t use Google or any search engines. But what do you do when there’s no information forthcoming? And weeks, months of waiting. Is it cancer? Is it benign?

As of today, I still have no idea if it’s benign. The only way to tell is to have a biopsy and that needs an operation.

And so my husband and I went to see the neurosurgeon. The neurology waiting room at my local hospital is painted bright pink. It’s a choice. There are colourful cards stuck to the wall and a plastic screen between me and the receptionist as she confirmed my appointment.

“Thank you …”

“Saved my life…”

The pain that they’d experienced is evident. It really shook me.

Photo by Patty Brito on Unsplash

The meeting took about half an hour, seemed like minutes. He told me how the tumour had grown into my skull and showed me images from the MRI.

It was the nothing that was horrible.

The tumour was obvious by its absence in the scans, leaving behind shadows that ate away sections of my skull, my brain.

My first thought at the massive black hole in my brain was:


How am I still functioning?

The space where brain mass should’ve been was huge. He said more, about how it had grown into my jaw and the muscles by my eye. That I could watch and wait for it to come out but I had ten years. It had to come out within ten years.

It hadn’t touched my optic nerve, yet, my eye has proptosis where it bulges because it’s being pushed out of my head; so much information.

I had written lists of questions, so brought out my notebook and started running through them.

He showed me the tiny grey squiggly lines on my brain that probably cause my seizures. I didn’t know I had seizures until a charity sent me a leaflet on them. I recognised the symptoms. I have petit mals, not the big ones that I usually associate with epilepsy. I check out, sometimes for seconds, sometimes for almost a minute.

More scans were booked and we left. Stunned into silence with this knowledge. It was more than either of us expected.

In my search for knowledge, I have come across thousands of people who have had tumours removed, specifically meningiomas. The telltale signs of a neat C-shape in the head or a line at the back of the skull. This wouldn’t be it. This is going to be a huge wound across my head, ear to ear. So much skull will have to be removed and replaced by titanium plates. An eye surgeon will be needed during the op to try and remove as much of the brain tumour from this area as possible.

Not all of it can be removed.

That’s when I’ll have radiotherapy. Potentially dozens of sessions will be needed to beat the tumour. Chemo doesn’t touch this type of brain tumour apparently. It’s slow growing so needs something more to kill it off and stop it from growing any larger.

I’m going to lose eyebrows and eyelashes.

I’m going to lose so much skull.

I might lose my eye.

What will my head look like afterwards? It will be dented and have dips and peaks. Mountains that I have scaled will be made in miniature. There’s a lot to process. I realised how much we as people rely on our faces, our regular looks to get by. Mine will change. There will be massive scars and visible changes and it will be obvious to the entire world.

I know now that I’ll have to embrace these changes if I want to carry on living life and I want to. I want to travel and climb more mountains and lie on more beaches and smell air that doesn’t remind me of home.

Rebuilding after a brain tumour

Photo by Benjamin Voros on Unsplash

But that means rebuilding first.

*deep sigh*

I’ve rebuilt before, several times. I think I’m better prepared than most people as I’ve been through something similar. Not a brain tumour, but a brain injury. I got through that, I lived. I got my life back, but I was also in my mid-twenties. Twenty years later, things are different. Recovery will not be the same.

But I’ve learned to speak again, learned how to live with amnesia and seizures. I’m worried though about the other side and what my life will look like.

So, now I’m waiting for the operation and life has kinda gone into stasis as we do. It’s taking a toll, not only on me but my loved ones and work.

Anyhow, I booked a week off. Tempted to book some flights too and then I know the operation will be that week.

Claire x

The Brain Tumour Charity


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