An unexpectedly bad year.

It’s twelve months to the day since I underwent a brain biopsy confirming a brain tumour diagnosis. Six hours rendered unconscious whilst a tiny hole was drilled through my skull and then a very fine needle inserted, guided by a live MRI scan to take a small tissue sample for analysis. My anxious family waited patiently for news of my recovery. Our one year old daughter, frayed and fractious at spending six hours in one place with little entertainment, expertly watched over, distracted and amused by my loving wife, didn’t understand where I was. I can only imagine how my parents felt. An eventual visit to me in recovery, sedated with tubes and cables protruding from everywhere did nothing to calm anyone’s nerves.

An extended stay in hospital was followed by the very hot days of summer 2018 which saw unimaginable pain, removal of surgical staples from my skull leaving a large scar (which still hurts even now), many steroids and painkillers, terrible weight gain, swollen legs, and chronic fatigue. It was all I could do to sit in the garden watching time pass.

Conclusively, the medical team announced a few weeks later, it was multifocal pilocytic astrocytoma, wrapped around my brain stem intruding into the main control centre of my brain with risk of hydrocephalus. The tumour could break through into my brain stem meaning game over. Not usually seen in adults; a spectacularly rare condition. Three pathology laboratories had been consulted on the biopsy sample such was the unbelievable nature of my condition.

But good news, it hadn’t presented anywhere else in my body so constituted a grade 1 primary tumour. Bad news, it’s location rendered it inoperable.

And that was my membership card issued for a club to which no one wishes to belong.

Life had already started swirling like a whirlwind almost a year prior to diagnosis; I already knew something with a great force was within me from the scans, bone marrow sample, spinal fluid lumbar puncture and the grave tone of the many doctors I visited. My GP consistently urged me to enjoy living in the present and to start a diary for my daughter.

At work I’d been a corridor warrior bouncing from meeting to meeting with ideas and plans. I’d been a man of action as a senior figure in IT, responsible for the storage and security of millions of pounds of manufacturing research. Slowly the job had become a confusing mess, draining remaining brain power, my hands tied behind my back by an invisible force. A fog descended, shrouding small details and serious misjudgment lurked with increasingly valuable decisions. A huge effort was required just to make sure I didn’t mess everything up. The four hour round trip commute became a hazy, crazy and dangerous daze of a drive.

I presented myself at the GP for a new patient screening just after moving house in the summer of 2017 with two unusual symptoms. The first was asymptomatic pain in my left cheek, which meant it was a bit numb. Secondly, we’d treated ourselves to an Indian takeaway that weekend and when going to collect it, I couldn’t for the life of me tell my wife where I was going. I finally stammered I was going to ‘the curry shop.’

“Not to worry,” the GP reassured me, “it’s probably a trapped nerve but we’ll get you a scan to check.” Even an unerrupted wisdom tooth was cast under suspicion of causing trigeminal neuralgia.

A month passed, hospital appointments were booked and promptly revoked amongst the you’re-just-not-sick-enough scheme instigated by then Health Secretary Jeremy Hunt. No matter, I thought, I’m a fully paid up member of private healthcare. Let’s get this sorted.

I’ve always been a big supporter of the NHS. If you’re critically ill, there’s nowhere better to treat you than within the NHS. But I’d previously used private healthcare under a company scheme for a hernia repair and found the process painless, easy and a speedy four weeks where the NHS had spent a slow-footed four years to get to the same stage. I thought going privately could get the scans and tests done more quickly thus releasing resources in the NHS. Boom, everyone’s a winner, I’ll get a diagnosis and be back on the road in a jiffy.

Except my private healthcare dropped me like a hot stone when a neurosurgical biopsy became the only way forward for a conclusive diagnosis. Someone needed to look at the tissue under a microscope to work out just what it was. Maybe you can get neurosurgery privately but they weren’t going to take a punt on me. I’ve nothing against my private healthcare provider. The risk of neurosurgery is so huge that immense critical care facilities are required to be on standby. Promptly tossed back over the fence into NHS territory, a team was assembled around me. Once the system swung into action, a date for the biopsy was proposed, although the day before it took place there was still some uncertainty as to whether there was a bed for me.

The actual procedure is recounted in another post I’m still writing (I’ll put a link here when I’ve published it) but there was a lengthy delay in getting a diagnosis and the proposed reductive surgery was cancelled a week before the scheduled date. It was deemed just too risky. It was so serious that my preference for breathing unassisted for the rest of my life was actually taken into consideration.

The rest of the summer and early autumn of 2018 seemed to meander until I was finally given a start date for fractionated radiotherapy. Photon beam linear accelerators would be used and I’d need to turn up every weekday for six weeks. Again, the actual process is covered elsewhere on the blog, but I mustered the strength where possible to collect my daughter with my wife from nursery after radiotherapy sessions, involving a twenty minute walk from the bus station. In hindsight it appears to have been highly beneficial to my recovery but at the time I remember begrudging the uphill trudge with my stick, weaving around the pavement and sometimes having to sit on a bench after ten minutes, my wife waiting patiently beside me.

Radiotherapy concluded just before Christmas 2018 and we had a quiet Christmas and New Year. Family visited us as I was in poor condition and I don’t really remember much of it to be honest.

Just before the year shuffled to an end, my wife organised a surprise get-together at our house with some of my oldest friends from school days. They came from all over planet Earth, taking time out from their busy schedules of seeing family when back in the UK, or travelling with their own young families from within the UK. I was genuinely touched and truly grateful to my wife for organising it and for my friends coming. I haven’t forgotten it and it came at just the right time. They were kind enough not to mention the dramatic hair loss.

Hair loss at the end of radiotherapy, November 2018. A selective haircut where the beam enters and exits.

If you’re suffering from radiotherapy or chemotherapy side effects then I sincerely empathise. If you make a little time to catch up with some friends or family and forget your treatment for a few hours, I guarantee you’ll feel better for it.

Other posts in the blog have more details about my treatment but it seemed fitting to write a bit of a summary for the 12 month anniversary of my biopsy. It’s something I hope to never have to repeat but if you’re about to undergo something similar, take heart that the experts don’t undertake such a procedure lightly, and you should get a definitive diagnosis. Treatment can be planned and it’ll remove some uncertainty from your life.

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