It’s exactly a year now since I had brain surgery to cure my epilepsy – ‘a right parietal resection for a focal cortical dysplasia’ if you must know. In plain English, a brain tumour gave me four fits a night and seizures powerful enough to throw my shoulders from their sockets 43 times in 12 months. I got to know my local A&E night-shift staff pretty well.
There were never any guarantees with the surgery – no one could say I would make it through, or make it back as me.
There were just percentages. The percentage chance of not making it back? Less than ten. Percentage of making it back with some damage to the left arm and left leg? Much higher. Percentage of being changed? Certain.
I remember the brilliant psychologist at the hospital testing me before the operation and telling me: ‘Loss of brain function is the door price you pay to roll the dice at the casino of neurosurgery.’ It is one of my favourite quotes of all time, purely because of the overwhelming fear it inspires.
Just two months before I was scheduled to go in, I was honest with her. Honest that I still didn’t know if I could go through with it. I was terrified, sweating at even the thought of it. Not so much the thought of dying, but about coming back damaged.
Or coming back not me, or only some fraction of me, or even with some other person in my body.
I am not unique. Yesterday I had a message from a lady whose brain surgery to remove a tumour was just two days away. ‘Not feeling very brave,’ she wrote.
But I’ve learned. Before having surgery that could take your life, you don’t need to be brave, or pretend it’s OK. It’s fine to say you are scared; to say you are terrified, even. Your only job is to hold on, by your fingertips if necessary. To hang on and keep sane until you get on that trolley and the cold rushes up your arm.
DO I TELL MY CHILDREN?
I wasn’t brave enough to tell my three children, India, 11, Poppy, ten, and little Max, seven, what was happening, despite all my lectures to them, despite always promising to be honest and despite imagining how they would feel if I popped off and never even said goodbye.
I just couldn’t fill their little heads up with worry. We mums want to seem invincible to our kids. I’d told mine I would always be there for them, I would never leave them. What if they looked back and realised I had lied? In the weeks before surgery, I started cuddling them at night and telling them a slightly different message: I’ll always be here for you, no matter what. And even when, one day, I pop off, I’ll still be watching, wishing you to be safe. Even if you can’t see me, I’ll be just next door. Listening… I’m not sure if it was for me or them, that impulse to stay part of their brilliant lives even if I was gone.
I didn’t have the emotional courage to say goodbye to my own mum. We agreed when she came to my house to take over the children and our world for a bit, we wouldn’t even try to talk. We would pass each other outside the garage, and the children wouldn’t see us get upset. And we did.
I MAKE A FOLDER OF DOOM
As I left for hospital – still terrified – I wondered if that would be the last time I got to smell my children’s hair. Or see my mum. In advance, to help me hang on, I had made plans. What I couldn’t face emotionally, I handled practically with my husband, Mark. We met financial advisers and put money into accounts for the children and Mark to access without me. We centralised any savings or old pensions under his name.
I made a folder of doom with all the paperwork Mark might need: birth certificates, wedding certificates, divorce statement, dull statements – stuff that helps sort a life from death.And I organised ahead. I sent mum her Mother’s Day and birthday cards, writing all the things I couldn’t bring myself to say.Made sure I said thank you to everyone who had helped me in life. Popped my head in here and there, not mentioning the operation but making sure I had signed off with a smile.
It’s a curious thing, tidying up your life in case it might be over. But sometimes the act of coping amounts to nothing more than getting things done. Even if my children hated me for leaving, they would see I’d tried my best to make sure they had everything they needed when I was gone.
Looking back, I would do all this again. When things seem very dark, knowing you left things tidy feels nice. Like the way we get the ironing done and the kitchen tidy before a holiday, so you can return to a nice house.
I’M CALM… AND READY
I slept on the ward the night before my operation, with my husband in a hotel round the corner. It felt better being there; the leaving – the big dread – was over.
In the morning I felt calmer than I’d felt for months, as if all the worry had gone. No more trying to pretend to be tough, just listening to the doctors, the anaesthetists, the surgeons. Listening, nodding, saying thank you.
I sat there calmly, having disinfected myself in the shower, with support tights rolled high and my neck marked to show it was my right side that needed the knife. Hair waiting to be shaved.
I wondered if this same calm comes over people preparing for death. The strange wash of inevitability that makes you fearless because you are suddenly powerless. I suspect it’s the same for all of us who have faced life-threatening surgeries and diseases.
THE THINGS I’VE LEARNED
Surgery was meant to last eight hours. Twelve hours and 30 minutes later I was out and in intensive care. It struck me, as I looked up at my husband, that he’d suffered more than me.
The journey to recovery has, at times, felt long. Post-surgery bacterial meningitis didn’t help. I had to have my skull reopened twice more and the flap of bone protecting my brain was removed to stop the infection squashing the life out of me. I have felt like a freak, and endured people’s sympathetic stares. My brain no longer speaks to my left leg and I have had to relearn the stairs. When I’m anxious, I can’t remember anything I just said.
When I went back to the psychologist six months later to test how much function I had lost, I cried before I even started the test, knowing she was about to expose how stupid I had become. My shame was absolute. No hiding now. No pretending I was OK. But despite some tears, I have learned a few things about life after surgery, things I share with hundreds of men and women who have trodden the same path in different ways:
1. Architects are IDIOTS
Stairs that curve, are uneven, are at an angle, or have no handrail are all a curse. To a******e architects, these details are about aesthetics. To me, they initiate a complete collapse of confidence. I will never tut at an old person moving slowly on stairs ever again. If anything, I will carry their bag and hold their hand.
2. Having hair matters
I pretended I was bigger than my hair, better than vanity. Me? Katie Hopkins? I don’t need hair! I do. Having no hair is really chilly. Bald men are actually hard as nails. Never tell a bald woman you can get really realistic wigs these days. You can get really realistic strap-on penises too, but that doesn’t mean all women want one. What we want is our hair back.
3 It’s OK not to be OK
Even if you spent 25 years pretending you are ‘doing great’, don’t do it in hospital just to get home. I pretended I was feeling better, when actually spinal fluid was leaking from my head, and I ended up with bacterial meningitis. Doctors don’t need brave. They need you to be polite but honest.
4 Don’t make your pain the benchmark
When people want to moan to you about toothache, don’t give them the face that says: ‘I survived brain surgery and meningitis.’ Look as if you care, make ouch faces, and offer them drugs. Don’t play top trumps with suffering.
5 Don’t go shopping while on morphineI did. This top was the result. I rest my case.
6 Don’t settle for survivor status
There comes a point, a few months after surgery, where you become proud that you survived, can dress yourself and don’t have to pee through a tube or in a shower sitting down. Do not let this be your new standard.
My young radio producer looked at me one day (no make-up/ mud-coloured hair) and said: ‘Will you stop being such a f****** cancer patient and step up.’ She had a point. I came back the following week with pink hair and make-up. And felt like a new woman.
7 Finally: tiptoeing the high-wire of life will make you a better person
You will love your family more, respect your husband for what he saw and cleaned up, and have a new perspective on what really matters. You’ll still get angry when no one changes the toilet roll, but you will love life because you got a second chance. And you can’t buy that in John Lewis.
Pictured below is an MRI scan of the inside of my head, towards the back. The bright white area is the tumour that the surgeons cut out first.
The reservoir of grey above it is meningitis, a build-up of fluid that was the result of a bacterial infection.
When they stuck a syringe into the top of my head, the liquid that came out was a light brown colour. At that point, the microbiologist told Mark she didn’t think I’d make it.
If you look at the skull line, you can see two gaps. That’s called a bone flap. After my first surgery, they put the bone back but when they went back in, they removed it completely and threw it in the bin.
They do this to relieve the pressure on the brain, and it means I now have no skull in that area. Just skin. The gap in my skull is about 6in across.
At some point, I could have another operation to put a titanium plate in my head, but I’ve decided not to for now.
I just feel a bit done with surgery and I want to enjoy my life and have a good time, which I am.
When I’m out and about I wear a hard hat, a ‘bump cap’, a bit like a small helmet, to protect my head.
Some people have the hole at the front of their forehead. If that was me, I’d probably think about having the titanium plate put in for cosmetic reasons. But I can pouffe my hair in a certain way so you can’t see the back of my head is flat. It also means I have the best party trick ever: if you put your hand on my head, you can feel my brain.
Katie Hopkins at the LGBT Awards at the Landmark Hotel, April 2015 b-error
It’s exactly a year now since I had brain surgery to cure my epilepsy b-error
There were never any guarantees with the surgery – no one could say I would make it through, or make it back as me
I wasn’t brave enough to tell my three children (pictured four years ago), India, now 11, Poppy, ten, and little Max, seven
Before I left for hospital – still terrified – I wondered if that would be the last time I got to smell my children’s hair
Looking back, I would do all this again. When things seem very dark, knowing you left things tidy feels nice
I had to have my skull reopened twice more and the flap of bone protecting my brain was removed to stop the infection squashing the life out of me
I bought this top while I was on morphine. I rest my case as to why you should avoid doing the same