My ‘stress’ was a brain tumour
It took 13 visits to a doctor over more than two years for Angela Young to discover the cause of her crippling headaches and nausea – and her story is far from unique
My husband, Christopher, called it right in June 2014, a year before the MRI scan. He followed a flow chart on headaches in the British Medical Association’s Complete
Family Health Guide, a prescient wedding gift 20 years previously. He was so convinced I had a brain tumour that when buying a present for our anniversary (a lovely Michael Kors handbag), he commented to a colleague in a bout of black humour, “Better keep the receipt.” Actually, he was worried sick.
I was quite sick, too. I first went to my doctor in Cambridgeshire with migraine-like headaches in February 2013 and at frequent intervals over the next two years. They were most noticeable in the mornings and I would vomit for no apparent reason. The doctor diagnosed migraines and, six months after my first visit, wrote: “No concerning features at this point.” Six months later, she noted “headaches when waking in the morning”.
My medical notes from these visits are detailed, but focused on things I assume are part of normal family life: husband away for a month on a research trip, teenage children taking A-levels and GCSEs, and the sudden death of my mother. The notes say on several occasions “objectively stressed”, but once also add “has had times in life when she has been under considerably more stress”. I visited the GP about 13 times in 28 months.
This chimes with research by the Brain Tumour Charity showing women are more likely than men to have made more than five visits to their doctors with brain tumour symptoms – and to wait between one and three years for a diagnosis. One participant in the survey was accused of attention-seeking and another of taking illegal drugs. One was asked: “What do you think your symptoms are – a brain tumour?”
I took a growing list of painkillers, none of which did any good. I was sent to an NHS physiotherapist for the standard three visits and discharged with the note “headaches better”. They weren’t. I tried an osteopath recommended by my doctor, whose treatment seemed to involve holding my toes. I bought an expensive new pillow. Nothing worked.
The random vomiting continued. One Saturday in April 2014, I arrived for dinner at the home of a friend and barely made it through his door before diving for the toilet. Journeys were fraught – the start of a family holiday to the US later that year was marred by my throwing up on the pavement outside our hosts’ home in Santa Monica.
By February 2015, I had dreadful whooshing in my right ear, like the sound of waves crashing. Our medical guide gave me a name for it (pulsatile tinnitus) and said in rare cases it could be a tumour pressing on a blood vessel in the head. I was told by my doctor that I had ear wax and given ear drops.
In June 2015, I made an appointment to see a different GP, and begged for a referral, using private health care. Within a week I saw a neurologist, Stephen Wroe, at my local Spire hospital, who referred me for an MRI scan. The day after, he finally gave me the explanation: meningioma. My hand shook as I wrote it down. Apparently, if you are going to have a brain tumour, this is the one to have. He arranged for me to see a brain surgeon the next day.
On June 19, I met my neurosurgeon, Helen Fernandes. Calm and assured, she inspired complete confidence. She did not give me a choice of whether to have surgery, only when. The tumour had been growing for 10 years – since I was 44, a typical age for a meningioma sufferer – so a few more weeks weren’t going to make a difference. She said the surgery for her would be “a walk in the park” and the operation was booked for August 25 at Addenbrooke’s Hospital in Cambridge.
For two difficult months I knew it was there, a named and unwelcome presence. A brain tumour is different from other growths because of its impact on what makes you an individual. I had been warned about this by a fellow sufferer and I became fiercely determined not to let anyone get the better of me. Small things took on huge significance: my electric car window got stuck and the garage claimed it needed a new motor costing over £200 when, in fact, it was just a fuse. The complaint I wrote to the garage expressed a lot more anger than was justified. I fought a long battle for insurance over a cancelled flight and wouldn’t give up. I developed a black sense of humour and made uncomfortable jokes which only I found funny. One day a colleague who knew about my illness asked me: “Can I pick your brains?” My reply: “I’d rather leave that to the brain surgeon.” I suppose we all cope in different ways.
The night before the operation was, unsurprisingly, sleepless. What do you say to your teenage children, before bed, when you will be off early the next morning and there is a possibility that you might not see them again? I realised that all I needed to say to Alex, 19, and Peter, 17, was “I love you”.
As it turned out, the surgery was indeed a walk in the park. The surgeon was as brilliant as we knew she would be. The meningioma was removed and with no side effects. My hair was only shaved at the skull so the two-and-a-half-inch scar is hidden. I was in hospital for five days and spent 12 weeks at home recuperating. Brain surgery is described as “an insult to the body” and it leaves you feeling drained. But four months on, I am at work again as a teaching assistant and life is back to normal, apart from a numb skull. Considering what might have been, this is a small price.
What have I learnt from this experience? You know your own body and when something isn’t right. Be firm with the GP and if you are not satisfied, ask for a referral.
But remember, not every migraine is a brain tumour – one in seven people in the UK suffers from the former, but the latter occurs in only around one in 9,300.
That must be true; it says so in my
‘I knew it was there, a named and unwelcome presence’