Grief is Like a Box of Chocolates...

So my wonderful, beautiful sister passed away last week aged just 46. She leaves behind a brilliant husband and two great - and I think resilient - boys, 10 and 11 years old. Her death wasn't unexpected, but she struggled on so very bravely at the end. Three weeks in intensive care, with the NHS throwing everything at her and trying every possible solution to help her pull through. Close, so very close, but tragically no cigar.

Ironically, I was for a while in the same hospital, at the same time. Just not in intensive care.I was having my own tough little stay, but paling into total insignificance, as I knew very well I was coming out. Twice I was wheeled one floor downstairs to say what I thought might be 'adieu'. I put on a brave face the one moment she was vaguely conscious, and the last visit I was sobbing and breathless with despair as I knew this was the last time I would see her alive.

I loved her from the moment she was born, and she loved me back. Perhaps mum would correct me, but I don't recall a single cross word between us. Ever. Even when I came back one day and found my Action Man dating her Cindy Doll. Even when the majority of my early girlfriends got the cold shoulder and the death stare because they - apparently - didn't reach the exacting standards required for her brother.

This picture dates from 1988. I drove through Europe with a German friend and my sis joined us when we reached our final destination, Greece. We had run low on funds and were surviving on a diet of olive oil, salt and tomatoes, together with stale bread for dunking, bought cheap or begged at the end of the day from bakeries. Her arrival and shameless fluttering of eyelids and cheeky smile won us endless free helpings of calamari and ouzo from beach barmen desperate to win her affections. None of them did.

I miss her desperately. I'm still sending her texts and when I feel brave, calling her mobile just to hear her voice... I'm crying at the most random of things. Today among other moments it was looking at the blue sky and wondering where she was up there. And Eva Cassidy played on the radio floored me.

Mrs W and I have always talked about two moments that shaped our life together irrevocably. A fire in 1999 that destroyed everything we owned. We were left with some window-boxes, their geraniums and the clothes we were wearing. And my diagnosis with multiple sclerosis in 2007. From the fire, after the initial shock, we learned that material 'stuff' matters so much less than we think. And that only photographs are precious. From my diagnosis we learned to live life to the full, to fill our days with happy memories and to love those special people around us all the more. I usually remember those lessons, though MS frequently manages to get in my way.

Fire? Multiple Sclerosis? Right now they feel nothing compared to the passing of a loved one.

What have I learned from my sister's death? I don't know. It's all too raw at the moment but for now I'm hugging my children more. And through the fog of grief, I'm feeling lucky to be alive, I'm determined to appreciate the little things, and to hang on to all the amazing, happy memories of life with a cheeky little sister.

Carer creep - The other side of the coin

Before my very eyes - or more poignantly, before my amazing wife's eyes - I am turning into an utterly cliche 1950's man. Just sit me on a rocking chair, lend me a woolly cardigan, pop a pipe in my mouth and I'm there. Perhaps a pristine copy of the Daily Mail would complete the picture. (Headline of the day - 'For goodness sake stay seated men! Why housework is good for women')

As my mobility, my balance and my dexterity reduce, so does any semblance of independence. I can hobble a few yards around the house with a walker, though I'm only really safe in a wheelchair or sitting down. I can't carry food or drink, I can barely prepare anything, and there are times when I can't get up out of bed. Or more scarily up off the floor after a tumble.

More and more, my wife, and sometimes my children, are edging towards becoming my carers while I just perch in the corner like some feudal Lord of the Manor. I hate it with a passion, while Mrs W and the children bear it with amazing love and patience. Glass of water? Yes sir! Plug my iPad in? No problem! Can you turn the lights on? Of course! What would you like for dinner tonight? Do you need the chair moving? Can I move the walker nearer? Need any help? Are you alright? Need your legs lifting? Put your socks on?

It's all the more painful for me that I have to lord it over the household because I always aspired to be quite the opposite as a husband. I'm seventeen years into a wonderful marriage and when I first met the future Mrs W, I instantly felt I was punching way above my weight. Still do. Almost overnight - this was 1999 - I reinvented my philandering, selfish, slobbish, lazy self to become Mr Modern Man... I cooked most of the meals, I did the washing and washing up, I made the bed and changed the sheets. Hey, I even did the ironing and cleaned the house. She was the beautiful and brilliant career woman, I slotted in merrily as the proud, devoted partner.

Every single one of those chores is now beyond me. Sigh... (I know there's the odd jealous person reading this, but believe me, it hurts). My greatest physical weekly achievement is to sort the sock pile, and even that usually slips to fortnightly.

I think I first became aware of 'carer creep' three or four years ago when the Sunday night job of putting out the bins began to be too much for me. I 'only' used a walking stick at the time, but I was always determined for the bins to be my job and my job alone. Thrilling I know, but as your everyday world is slowly and subtly stripped away, these teeny, symbolic things are important. Every so often those three or four years ago I would find that Mrs W had already moved the bins. It had probably taken her 30 seconds, whilst it would have taken me five stumbly, awkward minutes. And slowly as the months went by, it became an unspoken rule that my wife had assumed that chore. Many, many more have followed.

Carer creep. Perhaps the biggest and most unquantifiable symptom of Multiple Sclerosis is guilt.

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.

On Porridge and Patients…

So my escape from hospital was brief by any depressing standard. Out Saturday evening in time for a delicious Thai takeaway, shared with my equally delicious wife. All the ‘deliciousier’ after five nights of beyond bland (‘they try their best’) hospital food. A lovely lazy Sunday with the family. Blue-lighted back in on Monday evening with another raging temperature, paralyzing cramp, and a brand new sensation to take in, a bladder in spasm! Indescribable but most definitely bizarre and thoroughly horrible.

Usual routine of an overlong stay in A&E and a confused couple of nights in an Assessment Ward. Then out into exactly the same ward as last week, and happily, a new selection of three different chaps to share the endless, relentless and often degrading routine of 24/7 hospital life.

I say ‘happily’, because alongside two pretty much unconscious patients last week, I was plonked opposite a truly odious man. He was the spitting image of politician and loudmouth George Galloway, complete with scowl and arrogant air of superiority. A bit skinnier and possibly older... I remember his real name, but I’ll call him George. George’s main sin was to be abusive to pretty much every member of staff. From cleaners to doctors, nurses to caterers, he always found a reason to take umbrage at their reasonable requests and routine questions. He shouted back, sneered back, complained to anyone in or out of hearing range, and generally tried his damnedest to make everyone’s life more miserable than his. The National Health Service is far from perfect, but it is full of overworked, underpaid staff, nearly all of them straining and multi-tasking as best they can to make life comfortable for patients. And in return they receive too little thanks, far too many snipes, and an astonishing level of verbal and physical abuse. ‘George’ was far from being the worst offender, but he was definitely the blackest cloud in shouting distance of my bed. And he was forever in my line of sight.

Having thoroughly grated my chattering teeth with his attitude, George further managed to wind me up with his insatiable hunger. Overnight, from 10pm and every couple of hours, he would emerge from deep sleep to shout out for breakfast and some biscuits. I would lie there suddenly awake and seething... When breakfast finally arrived he would order five Weetabix, a bowl of porridge, and two pieces of toast. Then demand more porridge. The rest of the day was spent in similar style, pursuing the next meal, and nagging for biscuits in between. 24 hours of non-stop evil foraging. I hated him, and that’s a phrase and a sentiment I try to avoid.

Just as I was due to be discharged – for the first time at least – I discovered George was in hospital with a brain tumour. When sufficiently healthy, he was due to leave his own house forever and move into a nursing home. I don’t know his prognosis, but I know he had a right to be miserable. And I know a brain tumour could have subtly or unsubtly changed his character.

I’m regularly reminding people that Multiple Sclerosis is often an invisible disease. Yet here was I having very very bad thoughts about poor old George with a brain tumour. I've learned my lesson I hope, and can only electronically wish George well. Must not judge, must not judge…

(His bonkers breakfast order still winds me up though) 

Blue Lights, Morphine and a Resuscitation Room

OK, so there's me booked to speak on Wednesday to 500 health professionals at the thrilling 'Infection Prevention and Control 2017' event. Lots of clever, senior medical people in the line-up And little old me, who wouldn't know his Metatarsal from his Metabolism. I was there because I'd been on the other side of the fence, twice hospitalised by bladder infections, or UTI's. Urinary Tract Infections. I do know that hokum phrase at least.
Here's proof I was on the line-up. I had 20 minutes to talk about my bladder. Rock 'n Roll...
Infectioncontrol2017.co.uk/speakers
So of course I had a blog lined up in my mind. How fun it was to say 'willy' at a medical conference. How when my first bladder control symptoms emerged I lived in France, so I could pee anywhere. That sort of thing.

And then guess what? Sunday night before my grand outing I felt weird, Monday too. And by the evening with a raging fever and painful cramps setting in down my left-hand side, I knew I had another UTI. The two nice paramedic chaps knew I had a bad case too and blue-lighted me to my unfortunate home-from-home, Luton & Dunstable Hospital. I was whizzed through from A&E into my own hideaway, disturbingly called the Resuscitation Room. They assured me this was just about speedy availability, but I did wonder just how serious this was going to be.

The team had a nightmare undressing me, as the fever had already paralyzed my left arm 90 degrees at the elbow, and was scrunching my hand into a painful, immobile claw. Removing my shirt around me was like a puzzle, though I did let them know they were welcome to cut it apart, so desperate was I start being pumped full of whatever.

Whopping catheter shoved in you-know-where, canular inserted (in my arm!), blood and urine samples carted off, UTI confirmed. But the pain in my cramping left elbow and hand were off the scale now. I was breathing fast and short, and my heart was pumping like a mouse's. I heard the word 'morphine' mentioned, and once that happened, I wouldn't stop nagging those around me to do the deed. It felt like hours, though was probably a matter of minutes. Morphine, marvellous morphine, intravenously. Almost instant, glorious pain relief and some freeing up of the tension. My fingers could move enough to take a crap selfie.

A whoozy two nights in an Acute Ward, with further odd morphine doses as the antibiotics grappled with my gremlins and my temperature - over 41 at one point... And early Wednesday morning a transfer to a normal,  four person ward. That three night stay has a whole other blog in it.

Suffice to say, I'm out and alive. Grateful to the overstretched NHS for acting so speedily, and for filling me with so many needles. And this visit, on at least two occasions, the morning toast was warm. A butter-meltin' miracle...

And now the unpleasant waiting game to play with Multiple Sclerosis. How much damage is done, how much can I recover? Right now I'm awaiting a home follow-up visit, then I'm back off to bed... No morphine though, but that's because there's no pain, hurrah!

My, oh my, oh MRI...

Bzzz, click, whirr, tock, bzzz, bzzz, silence. Click, click, Pacman-like beep, click, bzzz, more bzzz. Silence. Long Bzzzzzzz. Silence. Then a bzzz that sounds a bit like a vibrator. Apparently. I wouldn't know, obviously.

The endless, seemingly random set of VERY LOUD noises DESPITE HEADPHONES that overwhelm you as you endure your MRI scan. I've done three now, two a decade ago (the second quick on the heels of the first because they scanned the wrong bit the first time!), the third last Friday evening at precisely 7.10pm. What a lovely start to the weekend that was. This last was 'just' thirty minutes, the first two were close to an hour. Each of them bzzz'd like a lifetime. Everybody asks what music I listened to, but that wasn't an option for my MRI. Just noise, and the thoughts racing unchecked through my head.

MRI stands for Magnetic Resonance Imaging. I had to look that up. It's a narrow chamber that you'e trundled into. A clever bit of kit that uses magnetic and radio waves to zap right through you and take a precise 2D image of whatever part(s) of your body the clever medical people want to inspect. Apparently it avoids the risks associated with X-Rays though it doesn't feel like that at the time. It's entirely painless, though you mustn't move a muscle, (difficult when you are prone to spasms), and of course you can't deal with the inevitable itches that crop up. Every sound effect feels of doom, of illness, a little of despair.

I know what they'll find when the images of my brain and the top of my spine come through in a week or two. It'll look like someone has spilt tippex on little areas of my grey matter. It only makes sense to the neurologist: where they are, how many they are, and if any are active. That is to say, are these squidges currently doing further damage to central nervous system, or not? They just look like evil bubblegum to me.

I had this new MRI as my Multiple Sclerosis is progressing fast right now, with my mobility worsening fast and a newish symptom, neuropathetic pain, getting seriously ouchy. Seriously. My neurologist wants to see what is going on. Not sure what he will conclude or if he will offer me any new treatments, as I'm already at 'defcon 3' in what I'm taking to try to slow progress.

Hey ho. Has anyone found anything useful from having MRI's? I'm not convinced, but I generally do what I'm told...

Matt Dawson, me and Motor Neurone Disease

Matt Dawson (ex-England Rugby Union captain, British and Irish Lions star, sparkly Strictly Come Dancer, long running captain on TV's Question of Sport, rugby pundit and commentator and probably 'much, much more'...). Met him this week at the #PowerPartTime '17 event, celebrating people who manage to hold down a senior job 'despite' working part-time. He was on the list for 2017, I was class of '16. Nice chap.

He didn't know me from Adam as I trundled up in a wheelchair, but he was polite and smiley enough to indulge me. But I knew him, and not just from the telly. I fixed him with a steely eye (not really), and told him we were from arch rugby rival schools. Matt from the dastardly RGS High Wycombe, me from the mighty Aylesbury Grammar School. More than that, we had once played against each other. I was the proud captain of our 1st XV, he was a super-talented 16-year-old, catapulted into his own senior 1st team two years early.

It's ironic that with multiple sclerosis playing havoc with my short-term memory and concentration, my long-term memory is crystal clear, perhaps even amplified. Matt doesn't remember a jot of it, but he kindly listened to my 29-years-ago recollections. We'd trampled and trounced our way to the previous fixture: a 40-4 win at home. So despite now playing away and having lost all our star players - I wasn't one quite frankly - we were confident we could put up a good performance. And indeed on a gusty day and with the wind behind us in the first half, we were solid enough. One dropped pass away from a certain try, me kicking away in defence when we might just have run and scored. Meh. 3-0 to us at half-time. The second half was a different matter. We turned into the wind and 40 minutes later, trudged off as losers, 17 points to 3. I have a vague memory of an annoyingly zippy scrum half. Oh dear.

Enough decades-old rugby banter, pleasant though it is to reminisce about my once healthy body that could run and run. And run some more. And then drink five pints and stagger around in a comedy foreshadowing of my future self.

This week also saw the passing of a South African rugby legend Joost van der Westhuizen, after being diagnosed with Motor Neurone Disease some six years ago. Matt Dawson knew him well as a rival and a friend. He wrote a great tribute to Joost for the Beeb... http://www.bbc.co.uk/sport/rugby-union/38884906

Joost himself was very humble, upbeat and philosophical about his diagnosis, approaching MND with good grace, humour and a twinkle in his eye that lasted right until the end. He worked hard to raise awareness and he worked harder just to live. There are very few diseases out there that I know for sure would be worse then MS, but MND is one of them. It kills a third within a year of diagnosis, more than half within two years. MND (or ALS), is the one you all did the ice bucket challenge a little while back and it's cruel beyond words. At least most of us with MS can expect to live a nearly normal life-span. Maybe a year or three shaved off, and a chance of a rather icky, bed-ridden end. Not really looking forward to that bit.

But the death of Joost van der Westhuizen and so many other stories I read in the papers or online every single day remind me just how lucky I am. Sure, I've got MS. Sure, it's progressing a bit too fast and scarily for my liking. But there's so much misery and poverty and war and terror out there. And illnesses worse than mine. I reserve the right to whinge and to have bad days. But I'm not going to complain while there's worse out there.

I'll quote Joost in a 2013 interview I saw. I love his philosophy and I share his take on life. "I'm happy on the roller-coaster of emotions", "I have a family and two small kids, I'm fighting for them", "Two things we take for granted as human beings, health and time", "[when you are diagnosed], then you realise what life is all about."

Like Joost, but with more time to do it, I owe it to my family and to my friends to live as good and as fulfilling a life as I can. And frankly, what choice do I have, what route do I take? I'm doing my best to pursue the obvious. Happiness, love, fun. I'm doing my best.