Jana’s GBM Story: My D-Day

I’m just coming up to the first anniversary of my own D-Day — that’s D for Diagnosis — which is not a fun anniversary, but is important for anyone with glioblastoma, because the diagnosis changes your life completely.

I had no idea that I had a brain tumour and didn’t know how to read the signs. Early diagnosis is key to urgent treatment. My main message: be aware of your body and brain.

Apparently I hadn’t been acting my normal self for some days. I’d been working in the US and, uncharacteristically, had been deeply affected by jet lag. Normally I cope with it, but I felt extremely tired. A day later, I noticed my left foot was lightly scuffing the sidewalks of Brooklyn.

 

My emails, texts and phone messages were becoming garbled, a cause for amusement amongst friends who accused me of having one too many glasses of wine, while I put it down to being careless or to bad auto-correct. Something was definitely affecting my processing.

Thankfully, when my husband met me off the plane, he noticed that something was seriously wrong. We were worried enough that we drove straight to the Oxford ER.

In the ER, I had a CT scan, then an MRI. The doctors quickly assessed my scans and saw a mass on the right side of the frontal lobe. Oxford is a centre for neurology, so the team was experienced enough to think that it might be a glioblastoma — and aggressive, given the symptoms’ rapid onset.

All this happened on one long day with no forewarning. I never thought that anything was wrong with my brain. I didn’t have a seizure, though I had experienced ‘auras’ and strange tastes and smells, which I put down to overdosing on strong New York coffee.

The bad typing was due to the tumour pressing against the motor cortex of the brain, which also affected motor control on my left side — which explained the limp! Fortunately, my speech and mental processing were unaffected and the symptoms disappeared after surgery ten days later.

I’m thankful to Tessa Jowell for her campaign to make ‘the Pink Drink’ (5-ALA) standard in the UK. This makes cancer cells glow fluorescent under ultraviolet light during surgery, helping to guide surgeons.

I also thank my surgeon for pioneering “awake surgery” in the UK, allowing for maximum resection whilst maintaining optimal brain function. This eight-and-a-half-hour experience is a story for another time!

Thanks to rapid diagnosis and skillful surgery and adjuvant therapy in the form of an Optune device (which sends  electro-magnetic signals across the reaction cavity), I am now doing well.

So I approach this anniversary with a great deal of hope and optimism, and a good quality of life, surrounded by my children and husband during this COVID-19 lockdown.

I am grateful every day for the amazing people who helped me look forward – and who introduced me to OurBrainBank. I am savouring every single extra drop of time as we find a wider range of treatments with better outcomes for all.

Stay safe. I hope you are enjoying spring wherever you are.

x Jana
April 2020

This is an abridged version, read Jana Bennett’s full story here.