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Showing posts with label #Cancer. Show all posts
Showing posts with label #Cancer. Show all posts

Thursday, 20 April 2017

And they all lived differently ever after

Once upon a time (exactly 25 years ago in fact), 12,000 young, enthusiastic and adventurous people descended on a mysterious location one hour east of Paris. And all these youngsters were magically transformed into 'cast members' by passing through a special little school called Disney University. We came out smiling and laughing, excited about a wondrous new place about to open called EuroDisney. We were immortal.

And lots of us were given jobs like room-cleaning, popcorn-selling and heating up french fries. Some of us got super lucky and landed once-in-a-lifetime jobs like driving a steam train, playing a famous character and dancing in parades, performing as real live cowboy, or looking after VIPs and celebrities.

I landed that last job. I genuinely did have a wonderful other-worldly experience in the company of the likes of Gloria Estefan, Kevin Costner, Clint Eastwood, Eva Gabor. And Michael Jackson. Here's me front left in a garish blue uniform, and MJ hiding at the back after we mobbed him with dozens of characters and a marching band.

Also in the picture is the best Mary Poppins I ever met. She was played by Ali Flavell, cheeky and in character enough to turn to Michael Jackson and ask earnestly, "And who might you be young man?" He loved it...

We were having a whale of a time. Or so we thought.
Ali (aka a supercalifragilisticexpialidocious Mary Poppins) was about to be diagnosed with a brain tumour, whilst I was showing the first, mild signs of multiple sclerosis. Ali underwent some seriously aggressive treatment back in the UK, and made a pretty good recovery after six months of rehab. Meanwhile. I blundered on, oblivious to the ticking time bomb in my brain and spine, the protective sheath around my central nervous system being quietly chipped away by my own immune system.

I wasn't diagnosed with MS until 15 years later, Ali started getting unsteady on her feet over time as the ravages of her radiotherapy treatment kicked in. Both of us are now in wheelchairs.

12th April 2017, Ali and I met again at the 25th anniversary celebrations of EuroDisney (now Disneyland Paris.) Here we are, neither of us any good on our feet, but both happy as Larry. For the avoidance of doubt, I'm the one on the left, and she's the pretty one on the right.


Life goes on. Both of us are married, both of us are parents to two boys. I live a happy, if very different life to the one I imagined. And in times of doubt, I fear very much for what my future holds. I can't talk directly for Ali, but every single pic I see her in, she has a beaming smile. And when I talked to her last week, she was full of plans for the future. And just like 25 years ago, she remains blessed with an enormous sense of fun.

I came away elated from bumping into Mary Poppins again, and more determined than ever to live life to the full. Who knows what's around the corner? We're both rather better off than Michael Jackson after all...

Friday, 10 March 2017

Death sentences and Life sentences. The blue pill or the red pill?

Hurrah! I'm out of hospital after a total of 13 nights fighting a bladder infection and temperatures twice steaming scarily over 41 degrees.. My ward routine that started around 5am with a rude awakening for blood pressure checks and a refreshed IV drip is no more. It's been replaced these last mornings with a gorgeous 6.30am start, the time my two much-missed children are allowed to start bounding around the house before school. I'm utterly exhausted and I'm blissfully relieved...

My last five hospital nights were spent in a ward of four chaps including myself. One stubborn but lovely old gent of 89 also recovering from an infection. A big nose, a big smile and capable of humongous, prolonged noises when sitting on a commode thrice daily.

Another, a bushy-haired, goatee-bearded Scouser, was trundled in a few hours after me with increasing back pain and a hacking cough. It had come out of nowhere. When he arrived he was extremely and forever uncomfortable. By the time I left he was the colour grey, in agony, on constant oral morphine and had been diagnosed with at least three cancers, including bone and the esophagus (throat, roughly). It was terrifying to see him worsening what seemed by the minute, and torture every night listening to his suffering. He had a wicked laugh and kept it going through all the bad news and grimacing. He made a special effort for the constant stream of worried family and friends dropping in. Heartbreaking.

The last of the four was a 6 ft 7in East Londoner, loud and sweary of mouth. Never stopped talking but most of what he spouted was great fun. Like me, he has an 11 year-old son. He came in knowing he was two years into pancreatic cancer, but with a newly bloated stomach. It was drained of over 4 litres of fluid one morning - Charming, but I was delivering not far off that via a catheter, so each to his gruesome own. One morning, a posh-looking consultant marched in and drew the blue curtains around his bed. Those blue curtains are handy enough for privacy during a clothes change, a bed bath, or a musical sit on a commode (see above). But they're hardly the best way to deliver devastating news. I tried not to listen, but it was impossible not to. Right there, three metres away from me, he was told firmly but with compassion that he had three to six months to live. He hyperventilated, he wailed, he swore like never before, while I cried quietly to myself taking it all in.

As the curtains drew back, I considered pretending to be asleep, but instead took a deep breath, and asked him how he was. I let him pour out his grief and confusion, and slowly he came to a calmer place. He called his wife in and gave her the news. More counselling, more gnashing of teeth. Given I was feeling bloody awful myself, and with Scouser possibly facing a similar fate, these were perhaps the hardest, most intense few days of my life.

I have a life sentence. There is no cure for Multiple Sclerosis, and there's unlikely to be one in time for me. Indeed probably not for a long time after. At my MS Centre, I meet lots of cancer survivors who come in to use our Oxygen tank to accelerate the healing process. I learn so much talking to them. They are usually in remission, and hoping that they'll stay that way. I look at them unable to comprehend what horrible treatments they have faced. They look at me, permanently disabled. More often than not, I know they are glad they have 'only' had cancer. And I'm glad I 'only' have Multiple Sclerosis. We frequently and guiltily say it out loud to each other.

The guys in my ward were cruel extremes, but definite Life Sentence or (potential) Death Sentence. Which would you choose? I hope you never have to.