How I knew I had a mind tumour: It wasn’t ache or a blinding flash – however these delicate indicators says LUCY DEEDES. Then I had surgical procedure awake to take away it – and that is what occurred subsequent

There was news in the papers last month that the brain surgeon Keyoumars Ashkan had performed DBS (deep brain stimulation) at King’s College Hospital on a woman suffering from Parkinson’s, while she played her clarinet. 

DBS involves planting electrodes into the brain and can help improve the fine motor skills of patients. 

The woman, Denise Bacon, had been increasingly unable to swim, walk or dance, and she was thrilled to experience almost instant improvement when the DBS was applied during her surgery.

I remembered that at Southampton Hospital, where I had brain surgery in 2023, they had recently operated on a woman who played the violin during her surgery. 

I asked the nurse about it during my pre-surgery assessment. ‘Attention seeking,’ was the unexpected opinion.

It’s just over two years since, aged 68, I had an awake craniotomy to remove a glioma. I had a 4.4cm mass (just over golf-ball size) on the left-hand side of my brain. 

It later turned out to be a secondary from ovarian cancer, having strayed an awful long way from its source. What business did it have going all the way up there, is what I want to know? At any rate, it had to go.

When anyone learns that I had a brain tumour the first question is always: how did you know? With many of these things it’s a gradual process, not some blinding flash of revelation. I didn’t have headaches, I didn’t crash the car or trip over any more than I usually do with my terrible eyesight. 

It was small movements with my right hand – trying to put the lid of a coffee jar on to a mug instead of the jar, always putting bottle lids on upside down, nearly always holding a knife with the blade side up, trying to drink out of the pepper grinder instead of the glass that was in front of me – all silly things that are easy to brush under the carpet.

There’s nothing new about brain surgery, they were trepanning patients 9,000 years ago; it’s thought they were performed to try to cure people of convulsions or epilepsy, or maybe even to ‘release demons’ in their heads. 

Today there are 13,000 diagnoses of brain tumours every year in the UK, with secondaries like mine outnumbering primary tumours by three to one.

It is more frightening, in my view, to have a malignant tumour in your head than in any of the other areas of one’s body that are also available. It seemed to me the ultimate invasion. Since I don’t have any musical skills, throughout my surgery, it was a question of talking and recognising pictures. 

A week before the operation, I saw a clinical neuropsychologist called Kizzy. She was going to be with me for the operation – asking me various questions – so my initial assessment with her was to show her how much, or how little, I knew. Some quite difficult questions, actually.  

It was a bit like taking the 11-plus exam: matching puzzles, finding the odd one out, recognising pictures, and finding the similarities or connections between two words. Music and tides, for example. Anyone get that one? I certainly didn’t and the answer was movement.

I asked the surgeon, a reassuringly competent woman named Joy, if being awake meant I would hear drilling – probably the question she gets asked the most. You will, she said, but you will not remember it.

So that was all right, then. The operating theatre seemed to be full of people and very cold. I lay on one side with my arms propped out in front of me as if I were holding an invisible box or posing for Egyptian art.

They sedate you first and then once they’re ready they wake you up and there was Kizzy’s reassuring face close to mine. We did the months of the year and some counting and she asked me to make shapes with my fingers, touching my thumb to my little finger. 

There weren’t any difficult questions and we never got the one about music and tides, which was disappointing, nor did I get to tell her the difference between a retort and a test tube. But if I stumbled on a month and went March then June, she asked the surgeons to stop. 

Then there was a good moment when they had finished and Rhys, the handsome anaesthetist, said I could go back to sleep. I didn’t even have a bandage; just 47 clips.

I spent only a day and a night in hospital, but I needed an MRI scan before I was allowed home – in case there had been a bleed. This was the worst experience of the whole process: it was about 7pm and the technician gave me a threateningly dire warning that if I moved an inch, the whole thing would have to be done again. 

I was cold, agitated, masked (Covid on my ward) and in my jangled post-op state found it was almost impossible to keep still. When it was over, I’m afraid I lost the plot and burst into hysterical tears. My two daughters came to the rescue and took me home, where we had a medicinal glass of champagne.

A few weeks after the surgery, the biopsy results came and it was a blip to discover that the tumour wasn’t a primary but a metastasis from the ovarian cancer. But then I thought, they got it and I’m still here!

I had three sessions of radiotherapy on three consecutive days, which, when it’s your head, involves wearing a made-to-measure plastic shell. They sweetly give it to you afterwards, but it’s a creepy thing and went into the recycling. 

There was some chemo, an Avastin infusion, a chemo drug that I’m still taking – the full panoply of defensive medicine. The radiation made my hair fall out so I had a woeful bald patch on the side of my head like Mr Potato Head; I amused myself making cashmere headbands out of an old jumper to cover it.

I was told, pre-surgery, that I would not regain anything I had lost. The brain/right-hand messages would still be scrambled and I would still get things upside down. I can’t type any more and dictate pretty much everything. Here is an example of the bonkers writing I managed when I first picked up my laptop:

‘My sisters and I got an early taste for commerce by sellig cookihg aooppple and bpus to bhe eighbursl Or he’d rottle ttr08gh the8r bins and sent stuyff baci t thel opej nere garden tp the bycic and loved takeom te money.’ (It’s quite Chaucerian, actually. I seem to have reverted to Middle English.)

Now, though, this all no longer feels like a threat – just a reminder that I could have lost so much more.

That first Christmas after the surgery, my four children were with me and it was all very much as normal. If I’m honest, I may have not been on my sharpest form for Scrabble, but the boys always win anyway. 

Then, last January, 16 months after the surgery, my new driving licence suddenly appeared in the post. (After the operation I was obviously prohibited from driving.) I sent a picture of it to Cheng, my lovely oncologist. When can I use this? As soon as you change that photograph, she said. Well, yes. Anyway, I felt I was on my way again.

So on we go: I’m as good as my last blood test, although, come to think of it, the blinking blood tests didn’t give me any warning about that tumour. I’m lucky to be here, lucky to feel so well, and lucky to have four extraordinary children for whom nothing is too much trouble and nothing is too bad to make a joke about. 

This year, Christmas will be in London with them all and will involve a not particularly Christmassy outing to Othello at the Theatre Royal, Haymarket. Can’t wait.

Adapted from Lucy Deedes’ Substack A Life In The Slow Lane