Warning signs

My GP missed plenty

I’ve written plenty here about my own experiences, from initial discovery and diagnosis and everything that’s followed. It’s been a comfort to learn that some of the writing has helped other tumour patients along their path too, that one of the reasons I first starting this journal.

What I’ve also learned since is that the majority of patients had an experience similar to my own where diagnosis was far from routine. In my case, my GP has since admitted they missed obvious warning signs for 3 months and it’s become apparent that I’m far from the only person with that story. It want to use this post then for awareness and share some of the other stories I’ve heard while walking this path.

Would you recognise the early warning signs of a brain tumour, be able to take action and advocate for either yourself, a loved one or even a colleague? I hope after reading this, you’ll be more able.

These are a range of symptoms gathered from different patients over the course of this year. They could mean many different things and I’m no neurologist, but one thing many of these patients have in common was that they were not taken as seriously as they perhaps could have been at first. Symptoms shared have included:

• Waking headaches (not hangovers - but caused by increased blood flow to the head while lying down and an increase in pressure in the brain).

• Recurring migraines in a person with no or little migraine history.

• Double vision that’s not rectified by spectacles

• Weakness or tremors in hands, onset of clumsiness, jerky movements

• Queasiness with a metallic taste in the mouth

• Unexplained tiredness and fatigue

• Behavioural changes, intermittent confusion

• Auditory or other sensory hallucinations - a number of people report smelling smoke like burnt toast.

• Seizures are a far more obvious warning, when they’re more physical. The sensory hallucinations or queasiness are another kind of seizure though - a focal area seizure. These occur in a more specific part of the brain, still a result of increased pressure caused by a tumour growing where it shouldn’t be.

It’s a long list and there are no doubt others out there too. Of course, such things might not always be caused by a brain tumour, and there may well be other explanations. A recurrent theme in patient groups thought, is people who had to advocate hard with their GP to be referred for MRIs and more specialist diagnosis. Often brushed off at first - as I was: “It’s just migraines, keep taking the pills”. It was only when I took the initiative and when for an eye test that I finally found myself on the right path for lifesaving treatment.

If I’d stuck with my GP, the next phase in development might well have been a seizure at the wheel of my car, as I know has happened to others. Discovering mine in an opticians chair is one aspect of my story I remind myself to be grateful for.

I share this list not to cause fear, but simply to raise awareness. The numbers aren’t nothing: around 12,000 new patients diagnosed each year in the UK alone, that’s around 30 people very single day. Often times, it’s hard to see symptoms in ourselves, especially as a common symptom is behavioural change or confusion, so keeping an eye on each might just save a life.