My brain tumour will be removed this week, and I can be thankful

http://www.theguardian.com/commentisfree/2015/jan/12/my-brain-tumour-acoustic-neuroma

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On the morning of my diagnosis I rush to get ready for work. It’s 6am and I make a cup of black tea. As I carry it across the room, even though I’m being careful, I spill most of the boiling liquid, burning my hand. What’s wrong with me, I think.

By 10.30am my GP will telephone me at work with the results of a brain scan I had a couple of days before: an acoustic neuroma, sitting behind my right ear, 42mm in size – a brain tumour. The GP says that, so as not to delay things, he’s faxing the referral to neurosurgery right away for urgent attention. Faxing?

“Any change,” he says, “go to A&E.”

“Change? What does that mean?” I ask, becoming more alarmed with every word he says.

“Have you been sick?” he asks.

“No.”

“That’s good.” I feel sick.

Diagnosis is a long, arduous path that is difficult to navigate. People get sick of you being sick and stop listening. To the untrained eye I look fine. But look closer and you’ll see that I can’t close my right eye, so it doesn’t blink. My face is sagging on the right side, I get sores on the right-hand corner of my mouth due to the drool that manages to escape because of facial weakness on that side.

Less obvious are the hidden symptoms. Right-sided facial numbness; overwhelming fatigue; tinnitus and reduced hearing in my right ear; a lack of co-ordination leading to an overpowering unsteadiness. All because I have this 42mm tumour that is taking up space in my head, slowly strangling the nerves relating to hearing, balance and facial sensation.

I feel stupid for not noticing and not pursuing some of the symptoms when I first experienced them years ago. I listened to others too much when they told me it was normal and didn’t listen to myself when I knew it was not.

There is a certain amount of relief when you finally get a diagnosis, especially one so definitive. At the end of November, the moment I found out, work sent me home and there I have been ever since.

Later that week I get a call from my bank. “Sorry for not calling,” I say, “I’ve had a pretty rough week.” I nearly tell them I’ve just found out I’ve got a brain tumour, but I catch myself. I realise how powerful that news is. It can get you out of almost anything.

I’ve felt the power every time I’ve said it, but I still don’t believe it’s happening to me. My sister had breast cancer three years ago and it’s taken all this time to stop the illness dominating her life. She has stopped obsessively searching for lumps, and says: “It’s history, old news, like it happened to someone else.”

Will I ever acknowledge the reality of what’s happening to me? I’m a 41-year-old woman, married, with no kids by choice. Children would mess up the vice-like grip my husband and I like to have on our lives. My morning commute takes an hour and a half so I read prolifically. I manage a small IT team at a prominent university. Apart from reading I love to cook. That’s who I am: work, reading and cooking. Sounds boring, but I loved it. I haven’t finished a book since being sent home from work. And don’t ask me what’s for dinner. I’ll become dithery and confused, and eventually settle on cheese and crackers.

After the relief of diagnosis, fear sets in. I know the snail’s pace at which the NHS usually moves, so watching it jump into action induces panic in me. Within a couple of days, the hotshot neurosurgeon calls. He tells me it is a slow-growing tumour that I have probably had for years and that a few more weeks while they plan my operation won’t make any difference. He tells me that as acoustic neuromas go, this one’s big, but the good news is it’s benign, it’s not cancer, though it must come out and soon. Then the bad news – I will lose all hearing in that ear and one side of my face may be permanently paralysed from the operation. The news that I didn’t have cancer didn’t register; I was too busy counting my losses.

A few days later I went to a support group for people with brain tumours, where I met people with brain cancer. Their lumps were in places like the memory, speech or personality part of their brains, and for some the prognosis wasn’t good. The phone call they got from their doctors was much worse than mine. I came away feeling grateful, devastatingly so.

It sounds vain, but facial paralysis bothers me more than deafness. People will be able to see there is something wrong. I worry that they’ll stop seeing me and see only a problem with my face. Not satisfied with taking half my hearing, the surgeon may take away my smile, my frown and that weird raised eyebrow look I’ve inherited from my dad. Not being able to express myself in full feels like I’m losing a big part of who I am. Admittedly, that is a woman who has worked in London for more than 20 years, trained in the art of remaining expressionless and speaking to no one. Now I smile or speak to strangers, luxuriating in my facial movements. I find much more to smile about nowadays.

The internet tells me these types of tumours grow at a rate of about 1mm a year. If they have a spurt they might make it to 2mm a year. Has the tumour been growing all of my life? I think back to key moments: did I miss out on promotions due to the fatigue of a growing tumour? I did a degree part-time a few years ago and got a 2:1. I now think my certificate should say 2:1 (with a brain tumour).

The morning after my diagnosis I was woken up by The Voice. Wake up, it said, there’s lots to do. It has been telling me what to do ever since, and so far it has never been wrong. We all have that voice, but the busyness of our lives causes it to fade into the background. Never has mine been so loud.

Do yoga, it will improve your balance.

Call your brother who you haven’t spoken to in two years.

Write a thank-you letter to the doctor who diagnosed you.

Tell them you’re scared before you have that brain scan.

Write a will.

My operation, a craniotomy, is planned for this coming Thursday. I have two main worries. The first is the horror of surrendering myself to it. I have to turn up at the hospital at 7.30am. They are trusting me to have eaten or drunk nothing for at least six hours. Like an inmate at a prison, I will have my possessions checked in. They will give me a gown to wear that is not my own. Then I will say goodbye to my husband, not knowing when I will see him again. Depending on the hotshot neurosurgeon’s schedule I may have to wait a number of hours, empty-bellied and frightened. Eventually I will have one side of my head shaved before they put me to sleep.

Don’t make me do this voluntarily. Treat me like a wild animal running through the woods, take me out with a sedative dart when I am cooking or doing my favourite yoga pose. Then let me wake up when it is all over.

Don’t tell me I am brave. The people who choose to get involved with me are the brave ones. My husband, for picking me up every time I fall over when I lose my balance physically – and metaphorically. My mother, for clearing her schedule for as long as it takes to get me better. People like my yoga teacher, who didn’t run a mile when I approached her for help, but instead restored some of my balance and made me feel strong.

My second worry is something I’ve never been good at in my life. Now I must face it head-on – the unknown. The doctors can’t tell me how long my hospital stay will be. Will they need to open me up again because my brain is bleeding? Will I have to have a shunt fitted because fluid isn’t draining from my head? Will the surgeon sneeze and nick my facial nerve?

Most suffering is in the worry. It means I have to live in the lacuna of uncertainty, embracing not knowing and carrying on, a new skill I practise daily.

I know that if you take my life as a whole this is an interruption. This will end. I refuse to make it who I am, my identity. Rather, it is an experience, one that leaves its imprint on my body. It has brought my life into sharp focus and revealed what I have to be thankful for: people, strangers and intimates for their kindness and well wishing; my tenacity and determination for carrying me through; and as much as I’m trying to shake it off, my plan for creating a freezer-full of food to be eaten post-op.

I am ready.