It was 6.20 pm on Friday January 3rd, 2014 when a chasm opened beneath me – and my life veered wildly off course.
Until that moment, things had been going better than I could ever have hoped. I had found real and profound late-life love 12 years earlier with Colin, my second husband and after a successful journalistic career which had brought kudos and awards if not much monetary reward, founded this fashion website, sosensational.co.uk, with my long-time friend, Cyndy Lessing, and it was about to take off.
Then just two days into the New Year, I was in my north London home waiting for my two adult daughters plus their husbands and four of our grandchildren to arrive for dinner, when my Blackberry rang. The caller ID showed it was my GP so I answered. The call went like this:
Doc: Is that Jan Shure?
Me: (curious) Yes
Doc: We have had your MRI results and they show a mass on the brain.
I am no medic but 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 in the form of instructions for us to go straight to our local A&E, from where we would be referred to the National Neurological Hospital in Queen Square, Central London.
I had been referred for the MRI in the previous November after a series of cripplingly painful headaches and bouts of unexplained fatigue. But by the time the MRI appointment came around just a few days before Christmas, the symptoms had passed and I had been tempted to cancel the MRI. The outcome may have been very different if I had.
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 MND (motor neuron disease). His first wife died in 1996, the same year as I was divorced from my husband of 24 years and 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 charity trek. It was in training for the trek, walking on Hampstead Heath that I first met Colin. He was in a relationship at the time and we were merely friends. We chatted while walking over the Heath, discovering that we shared similar values, a deep bond with our children (he has 4; I have the aforementioned 2), and a shared a sense of humour.
We had supper together a couple of times, but our relationship was entirely platonic. His relationship ended and in early 2001 another began. I, meanwhile, was enjoying my post-divorce freedom, inundated with dates; juggling male-friends and lovers.
At the time, I was the Fashion Editor, community news editor, occasional columnist and Travel Editor of the Jewish Chronicle. In the latter capacity, I had been asked for some advice about hotels by Colin, who subsequently invited me out as a thank-you – by this time his second relationship was over and he was single. Our relationship started at the beginning of February 2002, and we both knew almost immediately we had something very special.
In June 2002 Colin asked me to marry him and there was not a moment’s hesitation before I accepted. We were married one year later in a very intimate service surrounded by our children, their partners and a few very close friends and family members. Ten days later, we threw a big party for a wider circle of family and friends, and 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 earlier lives, which was another factor in bringing us close. So if in 2014 life was going well, neither of us felt undeserving of happiness.
Then we received the telephone call from my GP, and everything swerved violently off-course.
After dashing off to A&E on that Friday night, I spent 8 days in hospital while the docs established that the brain tumour was the primary, and not secondary – which would have meant it was cancerous and probably, therefore, a death sentence.
We then 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 25th I had 20 hours of surgery. Afterwards, the surgeon congratulated us both for having such a PMA – positive mental attitude. Colin deserves the plaudit. But I prefer to think that I was too unaware of the full implications of the surgery and simply happy to have emerged alive. I don’t think I even realised my motor function had gone. I was simply happy to be able to breathe, swallow and pee unaided.
But I was massively impaired, suffering ataxia in all four limbs. My left hand was totally paralysed, apart from the thumb which had some function. My sight was also badly affected; initially, my right eye was completely closed. An eminent neuro ophthalmologist declared that I would probably not regain full vision. I am happy to be able to say he was wrong. But I did suffer from nystagmus which meant I couldn’t read; and also had APD or auditory processing disorder, which impacted my hearing.
Through diligent physiotherapy, initially as an in-patient at the Royal Free Hospital’s brilliant Edgware Neurological Rehabilitation Unit, and later as an out-patient, I have regained the ability to walk though all my limbs remain determinedly uncoordinated and wobbly. From total paralysis, 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 very 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 has been mine for free, though to be honest it’s less the tumour itself and more the steroid medication the docs whacked me on from the moment I was diagnosed that caused the dramatic change from barely-there boobs to a full-on Katie Price frontage. Along with the increased cup size, came general weight gain, thanks to the steroids.
I haven’t felt strong or steady enough yet to try to battle the excess weight, but I will let you know how it goes… Anyone got any tips?
22 Comments
Amazing uplifting courageous fabulous woman Jan I love you an inspiration to all
Thank you Karen. We agree, Jan truly is an inspiration!
Jan’s courage at overcoming her limitations is truly impressive. Not many of us would be able to achieve what she has already acheived…. and i’m sure she’s still moving forward!
We’re pleased to say that Jan is moving forward Judith, albeit slowly. But any progress is progress!
A truly inspirational story. Jan – you must be a remarkable person, and obviously with your husband Colin, you have both faced adversity full-on and won. May you continue to recover.
Thanks for your really kind thoughts, Anne. Jan truly appreciates them.
Jan you are so courageous, you’ve come on in leaps and bounds, sending you and your family all good wishes for the future.
Thanks for your really kind thoughts, Boo. Jan truly appreciates them.
Thank you for sharing your journey.When you are ready to lose any excess weight then I can not recommend Jason Vales juice plans enough.I do the five day detox on a regular basis and have lost 21 lbs since Mid January.The rest of the time I eat clean and healthy so Deliously Ella cookery book is a good place to start and available in Sainsbury’s for £9. I belong to a closed face book page ‘ inspired by Jason Vale where you will get all the help and inspiration you need without disparaging comments one gets on other FB pages. The juices are delicious and are 80/20 veg/fruit.
Thanks for your really kind thoughts, Pauline and the very helpful tip about the juice diet. Jan truly appreciates them.
It doesn’t sound like you need any tips you seem to be doing brilliantly by yourself. One day at a time and enjoy every minute and don’t worry too much about the excess weight it will go eventually. Well done you – keep positive.
Thanks for your really kind thoughts, Patricia. Jan truly appreciates them.
What an incredible story – thank you for sharing. Here’s to continued progress and full recovery. Xxx
Thanks for your really kind thoughts, Rebecca, Jan truly appreciates them.
My heart goes out to you Jan but, I have to say, you seem to have coped (yes, I know we all say that) amazingly well. Our family has had what can only be described as a b***er of a year healthwise but without PMA & the support of each other we’d have been lost & very lonely. As someone who has been on & off steroids for the last 50 years and struggled with each weight gain, all I can say is to hell with it! When you’re ready you will feel stronger and more able to deal with it. Listen to your body, it knows best & baby steps all the way!
Thanks for your really kind thoughts, Kate. Jan truly appreciates them.
Thank you Jan for such an informative and revealing update. With your frankness you will undoubtedly be able to help others who have experienced similar problems but have been unable to put their feelings into words so succinctly. With the tenacity you have shown over the last 18 months you will be able to overcome any weight problems when you feel you are ready.
Thanks for your really kind thoughts, Diane. Jan truly appreciates them.
Thank you Jan for sharing your experience with us. What a frank and informative read. My heart goes out to you but you do seem to be coping extremely well. Here’s to your continued progress to recovery. Don’t fret about weight gain…. remember that PMA! All the best. xxx
Thanks for your really kind thoughts, Margaret. Jan truly appreciates them.
Praying for you and your family Jan. I hope your recovery continues and thank you for sharing your story. You are a true inspiration by sharing this with us.
Thanks for your really kind thoughts, Caroline. Jan truly appreciates them.