What it feels like…to have a brain tumour.

By Ann Maxwell, Edinburgh.

Brain tumour – what brain tumour?

Oh, that one! The one my husband calls my designer brain tumour because it’s so rare.

They normally amputate for chondro sarcoma, a cancer of connecting bone tissue. That’s not possible in the case of cranial chondro sarcoma which represents only 0.01% of all intracranial tumours.

Basically, I have bone cancer in the middle of my head – the bit of the skull that supports the brain along side the brain stem, the main highway connecting the brain to the spinal cord. Mine is on the right hand side. It was diagnosed eight years ago and required two major brain surgeries to ensure survival.

I lie. I do think about it often but I don’t worry about it and I have never let it win. Symptoms began with tinnitus which is ringing in the ear. Then I noticed that one side of my face was numb. There was a headache or two but nothing major. I asked my dentist if it might be a tooth infection. The magic of dentistry is that dentists understand much more than just teeth (my brain surgeon also used to be a dentist). My dentist said there was something pressing on the facial nerve and without worrying me, recommended a visit to my doctor.

It took a while to get to the bottom of it – or should I say the middle of it. It was labelled everything from an ear infection to sinusitis. Eventually, following an MRI scan, they called it “a differential diagnosis” which was short for “it could be a number of things”. Then they told me what it was and that it was serious, and followed up with “our role is to keep you as well as possible for as long as possible.”

I wasn’t having that. I was emotional, my daily run was a bit more challenging now that I knew. I even kicked the tyres of my husband’s car in anger one day. But I was going to live because I had too much to live for, and all that.

We found a man in the land who had experience of this rarer than rare kind of brain tumour, a quiet, gentle man who loved to row competitively at weekends and whose surgeon’s hands required extra-large sized gloves.

The day I met Professor Michael Gleeson he became my best friend in the world and still is. I believed him when he said “my job is to make sure that when you die, it’s not from this” and he took ownership of the problem.

I was, by all accounts, a remarkable patient. Within four days of my first surgery I was walking around the British Museum, albeit in my slippers and with an arm linked through my husband’s for support.

My balance was dubious, all sorts of things were spinning around that shouldn’t have been but I was determined. Visiting my husband’s tailor to help him choose a fabric for a new suit was almost a bridge too far, not the choosing of the fabric but the taxi ride there and back to the hospital. I had never realised before just how bad the suspension is in a London hackney cab. My brain was rattling about inside my head. It hurt!

Within a week of my second surgery we were dining in Nobu with my surgeon and his wife. By now I was deaf in one ear, having had my inner ear removed and I could barely open my mouth having had my jaw broken to access the tumour.

But all was good. Only 20% of the tumour remained, more than Mike had hoped for but it’s not an exact science, as he told me when I awoke from an eight hour long surgery.

The road to recovery was fast. In between these two surgeries I ran half of a marathon. The original plan was to run the whole distance but the brain surgery rather interrupted my training and so I shared it with a friend, also called Mike. Incidentally, my dentist is called Mike too.

the muir maxwell trust logo

The Muir Maxwell Trust

Ann and Jonny Maxwell have wrestled with 17-year-old Muir’s severe epilepsy since he was four months old, with little help and no one to turn to. Muir turns 18 in January 2015.

In 2003, recognising this lack of support for children and their carers, they established The Muir Maxwell Trust (MMT).

From small beginnings in Ann’s study in their Edinburgh home, the Trust has emerged as one of the UK’s leading charities supporting paediatric epilepsy. In almost 12 years it has raised over £8m .

The Trust provides much needed practical support to children and their carers struggling to cope with this devastating condition, whilst raising awareness and understanding of childhood epilepsy.

There were periods of extreme nausea but small sips of Coca Cola and lots of fresh air helped and I did a lot of walking before I could run again, literally.

My early runs were strange. The horizon would bounce along with me as my brain adjusted to the balance issues but I am convinced that fighting for fitness aided my recovery.

I went on from there to run three marathons, never having run a marathon in my life before.

My first marathon time was a respectable four hours and longer each time thereafter. The third marathon was the toughest – the Athens marathon in 2010.

It wasn’t the 20km uphill climb that I struggled with, or the temperature of 26 degrees centigrade, it was my heart rate. It was all over the place and the first sign of cranial nerve damage and more problems to come.

By April of the following year I had double vision. Cranial nerve damage following surgery is a mystery to me and to Mike, my surgeon, we just know it happens.

For me, some of it is permanent and some of it comes and goes. Eventually I had surgery to correct my vision. I had to. My world was becoming insular, with the luxury of single vision extending to only a few feet ahead of me.

I will never forget on one of my last runs before surgery seeing six sets of triplets (actually three) in prams coming towards me! I remember also addressing a conference and remarking that there were twice as many delegates than I had expected.

Cranial nerve damage is a difficult one.

The damage cannot be repaired and the symptoms can be progressive. My running is suffering now but I still run at least three times every week.

It’s nothing really. I know this for certain because as the co- founder of the Muir Maxwell Trust, a paediatric epilepsy charity named after our own son who is profoundly damaged by epilepsy, we are involved with the Edinburgh University Neurosciences Centre. This collaborative research centre focuses on epilepsy, autism and fragile X syndrome, MS and motor neurone disease. I am living with only a ‘touch’ of what motor neurone disease brings.

So many reasons to be thankful. As for cancer and brain tumours, also devastating, I have never felt compelled to support these worthy causes. My priority will always be childhood epilepsy because in our life, it has been far more devastating.

I am fighting back for good reason.