The brain scan that saved my life

Me: (curious) Yes

Doctor: We have had your MRI results and they show a mass on the brain.

I do not have any medical training but even I know that “mass” is medical speak for a tumour. I sat down heavily. My hand shook so badly I could no longer hold the phone. I passed it to my husband to hear the rest of what the GP was saying. We were to go straight to our local A&E, from where we would be referred to the National Hospital for Neurology and Neurosurgery in Queen Square, Central London.

I had been referred for the MRI after a series of cripplingly painful headaches and bouts of unexplained fatigue. But by the time the appointment came around in late December, the symptoms had passed and I was tempted to cancel. The decision to go ahead probably saved my life. And if this was bad news for me and my daughters, for my husband Colin, it was painfully reminiscent of events almost 20 years earlier when his first wife was diagnosed with a particularly aggressive form of Motor Neurone Disease. She died in 1996, the same year that I was divorced from my husband of 24 years, striking out on my own at the age of 45. One of the first things I did as a newly single woman was to sign up for a 1997 trek for Jewish charity One to One. It was while training for the trek in spring 1997, that I first met Colin. He was in a relationship at the time and we were merely friends. We chatted while walking on Hampstead Heath, discovering that we shared similar values; enjoyed a deep bond with our children (he has four); and that we had a similar sense of humour. We started going out in January 2002, and were married in June 2003 in an intimate service in the Beis Hamedrash of the Central Synagogue, in London’s West End, surrounded by our children, their partners and a handful of very close friends and family members. I can honestly say that I have felt blessed every single day I have been with Colin.

Colin and I had both suffered significant adversity in our early lives, which was another factor in bringing us close. So, if in 2013 our lives were going well, neither of us felt undeserving of happiness.

After dashing off to A&E on that Friday night, I spent eight days in hospital while the doctors established that the brain tumour was the primary. A secondary would have meant it was cancerous and probably a death sentence.

We began a round of consultations with neurologists and neurosurgeons. The symptoms also returned, with new variations indicating fluid on the brain. Having received the “good” news that my tumour was operable and non-cancerous we also received the bad news that it was located perilously close to the brain stem, so we took the decision to go ahead with its removal and on March 25 2013 I had 20 hours of surgery at the private wing of the Charing Cross Hospital.

Afterwards, the surgeon congratulated us both for having such a positive mental attitude. Colin deserves the plaudit but I think that I was too unaware of the full implications of the surgery and was simply happy to have emerged alive. I don’t think I even realised immediately that my motor function had gone. I was simply happy to be able to breathe, swallow and pee unaided. But I was left massively impaired, suffering ataxia (that’s uncontrolled jerkiness and lack of control) to both arms and my right leg. My left hand was paralysed and my right barely functioning. My sight was also badly affected; initially, my right eye was completely closed though it subsequently opened.

The surgery also left me with double vision and a condition called nystagmus, which meant I couldn’t read because the lines “jumped”; I was also left with Auditory Processing Disorder, which impaired my hearing.

Through diligent physiotherapy, initially as an in-patient at the Royal Free Hospital’s brilliant Neurological Rehabilitation Unit in Edgware, and later as an out-patient, I have regained the ability to walk, though all my limbs remain determinedly unco-ordinated and wobbly. My left hand is working again, although I still occasionally fling lettuce across the table when I try to use a pair of salad servers. And it remains almost impossible to use my left hand on a laptop keyboard.

The one slight upside is that my bra size has increased from a 34B-cup to a 36FF cup. A boob-job for which women pay thousands was mine for free, though, to be honest, it’s less the tumour itself and more the steroid medication the docs whacked me on that caused the dramatic change to a full-on Katie Price frontage.

Although I have to take a daily nap to get through the day, I am able to shower and dress myself as well as prepare food and cook for Colin and myself and even for visitors. I cook a Shabbat meal most Friday nights and I have made sedarim and Rosh Hashanah lunches. I am working again (on the aforementioned fashion website for 50-plus women) I am able to swim and am determined to be striding over Hampstead Heath by the third anniversary of my surgery.

I didn’t choose to have a fighting spirit, but I feel lucky to have such a spirit deep in my DNA. I think I acquired it from my mother, who died in 2013 aged almost 99, having remained fiercely independent until she was 97 when she was forced to go into full-time care at Jewish Care’s magnificent Vi & John Rubens House in Ilford.

I break down and have a little weep every now and then but I don’t believe it is depression, merely the human condition to feel sad when sad things happen...

 

Jan Shure was variously woman’s page editor, magazine editor, travel editor and fashion editor at the Jewish Chronicle. In 2012 she left to work full-time on www.SoSensational.co.uk, the shopping site for 50-plus women.