Hear Hear!

Over recent years I have noticed something peculiar about people. They all mumble. They miss out bits of words. Children are the worst, what with their squeaky high-pitched incomprehensible rambling. Women are almost as bad. People in groups produce a wall of unintelligible and impenetrable sound. The whole world needs elocution lessons. Or... Just possibly it might be my hearing. To rule out this absurd possibility I recently attended the Audiology clinic at my local hospital. It turns out that 50% of us with Facioscapulohumeral muscular dystrophy have high frequency hearing loss. Guess which 50% I fall into. The charming audiologist placed headphones over my ears and played various sounds into each of my ears while I pressed a button if I heard anything. Often I heard burps and rumbles and I dutifully pressed away. Sometimes the machine wasn't working and I heard nothing. Eventually the audiologist used her computer to generate a graph to represent my bat-like hearing. "This line," she said, indicating a straight red line crossing the chart, "would represent perfect hearing. This blue line is you." For about two thirds of the way across the chart the blue line wobbled at fractionally below the ideal red line. Not too shabby. Unfortunately, at the final third - the third representing the higher frequencies - the line plummeted down the graph like an unsuccessful attempt at hang-gliding off Beachy Head. To remedy the situation the audiologist produced two shiny little hearing-aids and plugged them into her computer. "There," she said. "I've programmed them to compensate for the high frequencies you've lost." With that she inserted the plastic tube bit into my ear and turned them on. "You'll need to practice wearing them. It takes a while for the brain to process frequencies it hasn't heard for a while." This did indeed turn out to be the case. For the next few days my brain ascribed the same significance to all high-frequency sounds. The squeak of my tyres on the floor was accorded the same auditory status as peoples voices. The sound of a distant lawn mower the same as the television. Worst of all, our budgerigar, Cato, twittered and tweeted at the apparent same volume of a commercial airliner taking off. Eventually though my brain began to work out which sounds had significance and which could be safely relegated to background noise and a kind of sonic harmony was achieved. A few weeks later I had an appointment with the audiology consultant who was positively thrilled to discover there was a link between FSHD and high-frequency hearing loss. "Well, I've learned something new today," she said, delighted. She also suggested that the hearing-aids should have their programming tweaked now that my brain had adjusted to them so as to maximise their effectiveness. This was duly done but the result means that for the last couple of days the budgie has sounded like he's been given a megaphone. One brilliant thing though was that we had taken Sam, now 10, with us. On our way to the clinic we passed the League of Friends' cafeteria. "The League of Friends," mused Sam. "Does that mean it's run by superheroes?" "Yes," replied Polly. "All of them cunningly disguised as elderly ladies wearing tabards." Thank you for reading. If you choose to comment please write quietly and annunciate clearly. Thank you.

They Call Me Mellow Yellow

Another reason for my summer silence was that I turned an unnatural colour. It was August, a week before we were due to go on holiday to Wales and the day before we were going to see the play Anne Boleyn at the Globe Theatre. Polly came home from work and asked me if I knew I was a shade of yellow. I pointed out that she was wearing a pair of lemon yellow shorts and that the sun was just reflecting off them. Yes, said Polly dryly, that's probably it, but just in case we'll pop up to the hospital on the off chance that it's not caused by my trousers.

Many hours later a doctor was trying to admit me to St Helier hospital because she was a bit concerned about some markers in my blood. After some tense negotiations she let me go home on the understanding that I returned first thing in the morning for further tests. But we have tickets to see Anne Boleyn at Shakespeare's Globe Theatre, I wailed. The doctor just sighed and said "you've gone yellow, Mr Deal. You have jaundice. Don't you think it's in your own best interest to find out why?"

The next day, despite my best efforts, they admitted me. I tried to explain that I am ill-suited to hospitals but the consultant dismissed my concerns with an airy wave of a manicured hand. "The pretty little nurses will look after you," he didn't quite say but might as well have done. The pretty little nurses were slightly less confidant when faced with my BiPap, wheelchair and need for hoisting, a profiling bed and an air-mattress. They looked at Polly and said, "You won't be leaving, will you?"

They wanted to stick me in a scanner so they could look at my liver but soon realised that this would be complicated in the extreme because I can't lie flat on my back without suffocating. The slightly less confident consultant agreed to try an ultra-sound, blithely unconcerned that the technician would have to achieve this while I stayed in my wheelchair. Unsurprisingly the results were inconclusive.

I spent an unhappy night plugged into a drip feeding some kind of antibiotic into my vein. The preceding two hours it had taken to get me in to the bed convinced the nursing staff and the more junior doctors that I would be better off at home since there was not an awful lot they could actually do for me. The consensus was that a gall stone had broken up and passed through my liver but since they weren't about to risk giving me a general anaesthetic so they could have a poke around they couldn't be 100% certain. Eventually the almighty consultant was persuaded by his underlings that I should be allowed to go home on condition that my GP organised regular blood tests. I fled to the car park still wearing my hospital gown.

Whatever was going on in my liver took a while to clear up because the markers in my blood that concerned the doctors remained stubbornly high for what seemed like a long time. I suffered some minor discomfort and felt a bit run down, missed a play, but, on the whole, reckon I got off relatively lightly.

Until next time.

The Boy In The Bubble

On Wednesday I was finally admitted to the Royal Brompton Hospital in London for them to try and address the problems I've been having with my blood gasses and with the BiPap alarm going off umpteen times a night. I was poked and prodded by a doctor who also (on the second attempt) took blood and analysed it. My CO2 levels are too high and as a result my blood is turning acidic, which is not as cool as it sounds. Time to take action before I turn into a blood-burning super-villain.

I was given a room on Foulis ward with an en suite bathroom. Unfortunately the en suite bathroom was not wheelchair accessible. Not a problem I was assured, and a commode was wheeled in. Deep deep joy. The room came with a fully working TV and, to my relief, wi-fi internet connectivity. It was also alarmingly chilly. Polly closed the open window.

The Brompton is a great hospital but no hospital is ideally suited to my needs. Three nurses spent nearly an hour getting me into bed that night. It was then that it was realised that the radiator wasn't working. Nurses piled blankets on me until I could no longer move at all. It was a very long, very cold night.

When at last the morning came I was sleep deprived and shivering and not in the mood for what was to come. Four nurses took another hour to get me up, hoisted to the commode, discovered (I already knew this but it was a revelation to the nurses) that I cannot balance on a commode, and finally transferred to my wheelchair. I'll spare you the details of the indignity of the saga of getting my trousers on. Suffice to say that in the end we did it my way.

Later we got to the heart of the reason I was there. Steve, the ventilator man, came to experiment on me. The problem, it appeared, was that the pressurised air was leaking, thus I was not getting the full benefit of the BiPap and also that the alarm was going off to alert me to this fact. The solution was a new mask. Steve was very excited, he had a radical new product to try. “It's a bit unusual,” he warned me. It was. Imagine a diving helmet crossed with a bin-liner held on to your head by padded straps that pass under your armpits to stop it blowing off. When I tried it, sitting in my wheelchair, it was an interesting experience, rather like being in your own person bubble (albeit a noisy one). Polly said I looked like Sandy the squirrel from Sponge Bob Squarepants. The problem started when they wanted me to try it lying down. When Steve came to fit it, with me balancing on the bed, I freaked out. The bubble became that plastic bag your mother told you not to put over your head when you were a child. I couldn't breathe, which considering its purpose was pretty ironic.

Next we tried a mask which fitted into my mouth like a scuba divers breathing apparatus. This time the problem was that if you tried to speak or swallow the air was blasted under pressure into your stomach which blew up like a balloon. I lasted about 15 seconds.

Finally Steve produced a variation of the nasal mask I already use. Bingo. I agreed to give this one a go that night. I was told a sleep study had been arranged for Saturday night to assess how effective the mask was going to be. The thought of another 3 nights of mobile hoists and commodes was too much. I begged Steve to bump me up the list and he surveyed my room and took mercy on me. He said he would slip me onto the end of the list for that nights tests.

Getting to bed that night was a debacle.. The nurses were brilliant but I was exhausted and nothing went quite right. It seemed to take hours and I was at the point of taking out a contract on the life of whoever designed the mobile hoist I was being swung around on like a human conker. When, eventually, I was lying in approximately the right position, a technician came in and attached a probe to my earlobe. At least someone had come and mended the radiator and I only needed four blankets. The new mask worked beautifully though and the BiPap alarm didn't go off once.

In the morning two nurses came to get me up. Half an hour later they went to get two more. Much much later the consultant came in with the results of the sleep test. (You know you are getting old when even the senior consultants look like they are fresh out of school.) I held my breath (so to speak) as he held up a print out and pointed to various lines tracing across the page. O2 saturation was at 100% all night. More significantly my CO2 levels remained consistently low throughout. “This,“ said the consultant, “is about as good as it gets. Excellent. You should begin to feel the effects over the next few days.” And with that I was released back into the wild.

When Polly had come to visit me the previous day she had stopped in the corridor to stare briefly at one of the other patients. When she came into my room she said, “Isn't that. . . You know. . . Oh, thingumajig from that show. 1970s. . . American. Very famous.” I peeked out of my room and, do you know what, she was right. It was thingamy from that cop show. He was in a private room and got to drink coffee from a cafetiere rather than the instant muck I was served. From then on I couldn't get that gooey song he sang out of my head.

I'm home now and have just had a good nights sleep. The BiPap alarm didn't go off once. Result.

Until next time. . .

In Limbo

Theoretically I'm off to the Brompton tomorrow but I won't hold my breath (they get really mad if you do that). I'll keep you informed of my progress or lack of it. Meanwhile I'm in a kind of limbo. Ho hum.

Bumped

Apologies for the lack of posts over the last week or so. What can I say? It's January. It's cold, grey and generally miserable. If there was any justice in the world I would be in Mauritius.

I am not, incidentally, in hospital. I was due to go in to the Royal Brompton on Tuesday so they could fiddle around with my BiPap settings and play with my mask in an attempt to sort out my CO2 levels. However I was bumped from my rightful bed by some sick person who was deemed to be in greater need than me. I was all psyched up and ready to go, ebooks downloaded and iPod charged, when the bed manager rang to say don't come.

Polly had to cancel her 'girls night' and we are both resigned to another couple of weeks of disturbed sleep with the BiPap alarm going off on average 17 times a night. It is worse for Polly because the high-pitched alarm doesn't always wake me but it does her. She has taken to kicking me in the back so we can share the experience. The sooner we can get it all sorted the sooner my bruises will heal.

I'll keep you updated.

Still Ticking Along

Yesterday I made the trip to Kings Hospital for the specialist FSH clinic with Dr Rose and his team. Once we had negotiated the near impossible task of parking within seven miles of the main entrance and then found our way through the maze of corridors to the Therapy Suite we were greeted by an enthusiastic volunteer who presented us with a pile of questionnaires designed to reveal my innermost concerns regarding my condition. No sooner had I started answering questions about my sleep patterns than we were whisked off to the cardiac clinic for an ECG.

The woman who performed the ECG was one of those people who wants to tell you all about someone they know who is in a wheelchair. In this case we were regaled with the tale of her nephew who had been run over by a drunken vet in Ireland, paralysed and then mugged by four Polish men in an alleyway in Dublin of his Christmas bonus. I think the subtext was that I'm lucky to only have Muscular Dystrophy.

A little later we squeezed in to a consulting room with Jo, the physiotherapist, Chris, a post-doctorate researcher studying MD, and Dr Rose himself. The purpose of the consultation was to review progress since the last one six months a go and to anticipate what was going to be required in the future. Everyone admired the super-duper wheelchair which they had been instrumental in getting funding authorised for and bemoaned the lack of progress regarding our housing situation. We discussed various problems I've been having with my hands and everyone looked at my toe. I was rather alarmed by their reaction to it. Words like 'tissue viability' were used. I was firmly told to get my GP to look at it.

Various technological ideas were mooted to help with my increasing difficulties with communication and I'm being referred to the appropriate specialists.

On our journey home I found myself in reflective mood. These sessions are of immense value but they force you to confront the reality of the situation. My condition is degenerative and, in reality, this means I am forever playing catch up with myself, compensating for physical abilities lost forever. I am not a particularly 'head-in-the-sand' type person but sometimes anticipating the future is difficult. Sometimes it makes me want to pick a fight with four Polish men in an alleyway. Mostly though it focuses my attention on what needs to be done so that my quality of life remains as spectacularly high as it is. I'm not exactly looking forward to some aspects of what is to come but, all things considered, I'd rather know and be prepared than be caught by surprise and left wallowing. You can't anticipate every change but some are inevitable and, as such, forewarned is forearmed. I'll drip feed you the details as and when they occur.

I'm mentally preparing myself for what I hope will be a very brief stay at the Royal Brompton Hospital next week while Dr Simonds and her team try to get a handle on my blood gases by fiddling with the BiPap overnight. My beloved is so distraught at the thought of my absence that she has arranged for a 'girls night in' with a whole coterie of friends to help her cope emotionally.

If I can get a Wi-Fi signal in my ward I'll blog you from there. Until then, thank you for reading.

The Blue Box

I am feeling so much better that I am beginning to wonder what all all the fuss was about. My temperature is down to normal and the infection seems to have gone. There is some residual gunk and coughing but it is as nothing compared to last week. It will take another week or so before I'm back to what passes as normal for me but I can live with that.

I would certainly have ended up on a respiratory ward at St Helier or the Brompton Hospital had it not been for one particular piece of kit. At times of crisis our home can resemble a reasonably equipped emergency facility what a BiPap ventilator, a nebuliser, ceiling hoists, profiling bed, air mattress, Oxygen, a drugs cabinet with a significant street value, and a blue box the size of a large bread-bin, known in our home as 'the cough machine', but more technically, by my consultant at least, as a Cough Assist Mechanical Insufflator-Exsufflator.

The Cough Assist Mechanical Insufflator-Exsufflator is a genuinely life saving bit of tech. Without it I would either be dead or on permanent ventilation. The machine works by clearing secretions by gradually applying a positive pressure to the airways and then rapidly switching to negative pressure. Apparently the rapid shift in pressure produces a high expiratory flow, simulating a natural cough. The reality is more akin to having someone Dyson your lungs on full power. The effect is unsettling and uncomfortable but infinitely preferable to hours of ineffectual hacking coughs that simply exhaust you, or, sessions of chest pounding physiotherapy that induce near psychopathic hatred of the person pummelling you.

Way back in 2000 I was very ill with Pneumonia resulting as a complication from Pancreatitis. I was in intensive care and high dependency wards for months and for most of the time had a tracheotomy. A tracheotomy, for those unfamiliar with the procedure, is where someone, preferably a doctor, makes a hole in your neck and feeds a tube into your lungs for air to be drawn through, or, as in my case, for someone to stick a suction tube in and vacuum your lungs for gunk. Having a nervous F2 wielding a scalpel at your throat while you are passing out from lack of Oxygen rates pretty low on my list of things to do again. The advantage of the cough machine is that it is totally non-invasive. It removes secretions without the need for someone sticking a plastic straw through an unnatural orifice in your neck. I'm not sure how much such machines cost but they must be cheaper than spending days, weeks or months in hospital.

Even today, when I am feeling so much better, I have already used the blue machine twice. Once again I am grateful to be living in a country with a national health service that provides such equipment free at the point of need.

In the light of all above, it might seem churlish to moan about another freely provided piece of absolutely necessary kit, but this morning, just at a critical juncture in the preparation for a shower, my new multi-thousand pound, state-of-the-art, rinky-dink wheelchair stopped working. The control panel LCD screen simply states there is a system error and the thing refuses to budge. Fortunately, the ever unreliable Serco, have failed to collect my old wheelchair and so I am back in that until an engineer with a degree in computer science can get here tomorrow. I have had the new chair ten days, most of those I've been too ill to do anything other than sit, so I doubt the problem is overuse. Mind you, I wouldn't put it past Matty to have reprogrammed it to play Marvel Ultimate Alliance 2.

Until next time.

A Rose By Any Other Name

The problem with going to a hospital you have never been to before is knowing how long it is going to take to get there, park and find the right clinic among the maze of corridors and waiting areas. For this reason we arrived for my appointment with a consultant neurologist at King's hospital muscle clinic fully an hour early. Polly and myself, with the boys in tow, settled down in the on-site café to kill time drinking coffee and playing Mario on Nintendo DS's.

My heart sank as sometime later we found the waiting area for the clinic packed with people and with a red L.E.D. sign flashing a message apologising for the delay. My appointment was for 11.30am but judging by the number of people waiting I'd be lucky to be seen before lunchtime. However, just as I was settling down to my book, and bang on 11.30, a doctor appeared and called my name, beckoning us all to follow him in to a consulting room.

Dr Rose had black thinning hair, a dark suit and a hearing aid. The hearing aid is significant because Dr Rose lip reads. Trying to lip read someone with Facioscapulohumeral Muscular Dystrophy presents a degree of difficulty for even the most accomplished reader of lips. Fortunately Polly was there to translate/interpret for him and the consultation proceeded smoothly. Dr Rose heads up a team of specialists in muscle conditions, including physio and speech therapists and a palliative care expert. Happily I will now have access to these people.

Often, in the past, I've been seen by consultants who have looked at me as something of a curiosity because of the relative rarity of my condition. It was a relief to see a doctor who is thoroughly versed in the ins and outs of FSH MD. In addition he has promised to wholeheartedly support our application to be rehoused and find funding for the robotic arm device. I have a follow up appointment with Dr Rose in 3 months time to see how I've got on with his team.

Tomorrow we have a meeting with the district nurse. Let's hope we make the same kind of progress.

Crabby

Oh I'm a moany old git today. I had an appointment at the Royal Brompton Hospital this afternoon, the result of reaching near breaking point a while ago. (See - A Series Of Unfortunate Events) The good Dr Toosy wisely decided to have my current medical situation assessed by the mighty minds of the Brompton and (early next year) some one at Kings. So, today, Polly, Matty (off school with what Sam had last week) and I ground our way through the London traffic, waving at snails as they whizzed by, to Kensington. Parking in the area around the hospital is virtually non-existent, with about 9 disabled parking spaces to share between both of the hospitals main buildings. We found one of the precious bays unoccupied for a nano-second and nipped in, no doubt causing some one with an iffy leg to have to pay at one of mortgage requiring 'normal' parking spaces.

On the way up Matty had been asking about our astrological birth signs. I'd given my stock response, “I'm Pyrex and your mother's Caesarean,” but Polly admitted to being Libra and told him I was Cancer.” “The crab?” “There's no one crabbier,” remarked Polly. Then warming to her theme, “he's so crabby he moves sideways.” The reason Matty was asking about this nonsense was not because we were encouraging his enquiring mind to explore new age mysticism but because it had been mentioned on The Sarah Jane Adventures, a spin-off of Matty's beloved Dr Who.

Anyway. . .

We waited on Lind, a corridor on the top floor, for a doctor to see us. The clinic is always busy, full of people who for the most part make me look like an Olympic athlete. (Mind you, they probably look at me and wouldn't fancy my chances in the 110 metres hurdles.) Eventually, after blood had been taken from my ear-lobe and tested for various gasses, we got to see Consultant Dr Michael Polkey, who is, as all the staff are, very nice. Apparently my blood gasses are fine. . . and that's it really. There is not a lot more they can do. They did, very kindly, offer to take me in for the odd weekend if I need a break. And he was very sympathetic and supportive, prepared to write as many letters as we need writing to any one who we think might be able to help. The trouble is, I can't think of anyone for him to write to. Does anyone know the address of good stem-cell researcher?

The journey home made the journey there feel like Lewis Hamilton's qualifying lap at Monte Carlo. Tortoises and three-toed sloth rush passed us as we crawled home to pick up Sam from where he was being looked after. So, there goes another afternoon of my life I won't get back. Bah humbug.

The Honeymoon Story (Part Three)

At last, the final part of the honeymoon story in which we find out why I have of a fear of Lakeland Plastics.

If you haven't read parts one and two then you might like to click here and here to catch up on this tale of lakes, love and the emergency services. I'm not sure why it has taken me so long to write part three, perhaps it is because I'm still living with the consequences, or may be I just forgot. Grit your teeth (l really mean that), and let's go.

Have you ever heard of Lakeland Plastics? Nowadays it's just called Lakeland and sells kitchenware and useful type stuff for the home. 15 years ago it was primarily a catalogue based company with very few retail outlets, the biggest being the factory outlet at Windermere in the Lake District, the company's head quarters. Polly, as soon as she learned of our honeymoon destination, determined to visit this homeware Mecca. If I remember correctly she particularly wanted a muffin baking tray, but more eagerly she wanted to gaze upon the many kinds of plastic based storage solutions the company had to offer. We were, after all, just setting up home. So, after visiting the home of Wordsworth or Beatrix Potter, after cruising the lakes on steamboats, after dining on locally caught freshwater fish, visiting tarns and becks, fells and dales, taking in some of the country's most beautiful vistas and panoramas, Polly would ask, “When are we going to go to Lakeland Plastics?”

Towards the end of the fortnight, the early October weather turned more unsettled and a day taking in the shops of Bowness and Windermere seemed quite an attractive proposition. There were several bookshops I'd spotted and right at the top of the hill, next to the railway station was the afore mentioned Lakeland Plastics. Polly, with uncharacteristic patience, indulged me as I browsed shelves of local history books and biographies of Wordsworth and Arthur Ransome, and flicked through endless watercolours of the local landscapes, gently herding me up the hill towards her ultimate destination.

Finally we were inside the strip-lit outlet of all things kitchenware, polyurethane and pastel coloured. I feigned as much interest as I could in breakfast cereal storage options and plastic freezer boxes. Polly was remarkably restrained, only buying a few bits and pieces but taking note of things she would order later, so we eventually left the store relatively unburdened with carrier bags. A fine Cumbrian drizzle had started so we decided to head back to the warmth and dryness of our hotel. Polly hung the bags on the back of the heavy duty, out door powered wheelchair, the Cheetah, and we set off down the busy hill, lined with mostly inaccessible craft and gift shops.

The pavement (side walk) was much too narrow for us to walk side by side so Polly hung back a few feet. Something in one of the shop windows caught her eye and she paused briefly while I trundled on ahead. The drizzle turned to a light but coat soaking rain and my mind was fixed on getting to somewhere dry. As I approached the junction with a small side road the pavement steepened and slightly banked towards the road, the well worn, ancient, flagstones were greasy with the wet and before I knew it the wheelchair began to slide with a sickening, unstoppable inevitability towards the nine inch high curb and the busy traffic filled road. I pulled back on the joystick controller but the weight of the chair and the slickness of the ground beneath the wheels only produced a high pitched squealing sound and caused the chair to slew towards the side road. I heard Polly shout and felt her pulling on the back of the chair but gravity won out and the small leading wheels slipped over the curb, tilting the chair forward and sending me beyond the point of balance. There was a slow motion, plenty of time to see what was going to happen but nothing you can do about it moment, and I fell face forward from the chair. Polly just managed to stop the chair from following the over the edge and on top of me as I did a bone crunching three point landing, two knees and a chin, on to the rain soaked road. There was a shriek of brakes as startled drivers skidded to a halt around me and a kind of crunching, cracking sound as six of my teeth shattered. An awful lot of blood was being washed away from me and down a drain a few feet away.

Within a second Polly was kneeling beside me and crowd of curious and horrified on lookers had gathered. “Are you all right? Stephen? Say something.” “Uhggh. . .,” I replied. “Umph 'roken m' teef.” Little white pieces of enamel fell from my mouth. A local shopkeeper came rushing over carrying a small green box. “I'm trained in first aid,” he declared excitedly. “Sod that,” said someone else. “Call an ambulance.”

I don't know if you have ever lain face down in a Cumbrian towns main road, causing a massive tailback of traffic, but if you have, like me, you will probably not remember the experience fondly. It was cold and wet, shock was setting in, and the ambulance was taking forever to get there because some fool was lying in the road holding up the traffic. Polly had to stop well meaning people from 'helping to get him back on his feet' or practising their Cub Scout first aid training. My teeth began to chatter and that hurt like hell.

Later, much later, at a casualty unit in Kendal my chin was stitched up and I was given some painkillers. I asked to see a dentist but they looked at me as if I was asking for an audience with the alien leader of a small planet circling one of the stars in Orion's belt, so I was resigned to waiting until we got back to London. The inside of my mouth felt distinctly unfamiliar.

We still had a couple of days left of our honeymoon but by the following day my tongue had begun to swell and turn a fetching shade of black. Somehow the romance had gone out of it. By the time we were back at home my tongue was rubbed raw on the jagged edges of my teeth and I was slightly feverish. Miraculously I didn't lose any of my teeth. Six were cracked and broken but I didn't lose them. Even today if I run my tongue around my mouth I can feel the damage. And a shiver runs down my spine every time I see a plastic freezer box.

And so ends the saga of our honeymoon, our first holiday together. Fortunately this was not a foretaste of things to come. Over the last 15 years we have had plenty of lovely holidays, some of them without incident. (Not many, but a few.)

Is There A Clown Doctor In The House?

A few months a go we were watching one of those regional programmes that are usually about cleaning up the local canal or restoring an old theatre or such like. This one was about a group of people who go in to hospitals to visit children and help them come to terms with their conditions, or help explain the procedures they will be going through. They are known as Clown Doctors and use humour, magic and sometimes just plain silliness to to help relax and comfort the children. It turned out these Clown Doctors weren't just a bunch of annoying would be children's entertainers in wigs and red noses but were trained in all manner of things from psychology and infection control to close-up magic and balloon modelling. Personally the idea of someone coming up to my sick bed and asking me to 'pick a card, any card' would make me reach for the pain relief, but I'm not four years old and facing months of chemo.

I turned to remark to Polly something facile about rather having morphine than laughter as my preferred best medicine when I noticed a smile on her face and a far away look in her eyes. “I could do that,” she said. And truth be told I knew she could.

A few weeks later, after an exchange of phone calls and emails, an application form arrived. I say application form but I mean a demand for an autobiography combined with a dissertation on the philosophy of child care. I swear it would be easier for an ex-junkie, militant communist to join MI5 than for a experienced children's entertainer and nursery nurse to become a clown doctor. I know I'm biased but with more than 15 years experience as a story-teller, professional qualifications and real life experience as a nursery nurse both here and abroad, and years of earning a living as a jobbing actor (playing countless parts as cute woodland animals and fairytale creatures) there is no one in the whole country more qualified than Polly for a job like this. She spent hours and hours filling in the form and then dropped in the post.

As you might imagine, following the TV programme, the Clown Doctor people had been swamped with requests for application forms from would be balloon modellers and wig wearing circus wanna-bees. In the end some 375 people actually made it through the form filling and of those a handful were invited to a workshop. Polly was among them. After a morning of finding her inner clown and evolving from the primeval swamp into a dinosaur she was called back for an interview which is where we were up to today.

This morning Polly made her way back to Angel Islington for the interview. There were only six trainee places vacant so I did the “You've done really well to get this far” speech. Later, I received a phone call from her telling me how she had gone mad and been unable to stop talking. “I was surreal even by my standards,” she groaned, “At one stage I was telling them about ready rolled pastry already cut in to circles.” “Why?” I asked. “I don't know,” she wailed. “But after it was over one of the panel asked me where she could get some. Is that a good sign?”

Apparently it was. This afternoon they rang to give her the job though whether for her acting and entertainment skills than for her particular knowledge of frozen patisserie we'll probably never know. Next month she starts a process of training that will last two years. That's an awful lot balloon animals.

A Wheelchair In Wales

Sorry for not posting for a few days; I'm still recuperating from last week. It's a case of two steps forward, one step back at present. The main problem is fatigue. I'm tiring very quicklybut I'm getting there. Now where were we? Oh yes, Wales.

The Pembrokeshire coast is a national park and is spectacularly beautiful. It is a rugged coastline, dotted with sandy bays, caves and rare wildlife. The whole area is littered with medieval castles. When it rains it dissolves the landscape into a melodramatic scene of countless shades of grey. When the sun shines it is glorious, When the sun shines.

Pam's cough got steadily worse and as a result a doctor had to be called out. This proved easier than you might have expected. Within a few hours of being called a doctor arrived to dispense a prescription and that was pretty much it. Over the next few days Pam gradually recovered and our holiday continued on.

The first few days were spent on the beach doing seasidy type things. When it rained (which was often – this being August, Wales and my summer holiday) we retreated to the local leisure centre to take advantage of Wales' 'free swimming for all` policy. In between showers we visited Carew Castle (pronounced Care-ree) which is a a small but spectacular castle ruin where they put on archery exhibitions and demonstrate medieval armoured fighting techniques. I was beginning to feel a bit bubbly in the chest.

I wouldn't normally have worried too much, At home I would have used the cough machine and kept on top of it, but here, without the necessary equipment the strain began to tell. The more I had to cough, the more tired I became and the harder it was to cough. I could feel the heat of infection starting to burn in the base of my right lung. So on the Saturday, once again a doctor was called but somewhat understandably he sucked air through his teeth and said he would ring the nearest A&E department and warn them to expect me.

The nearest hospital was just over 20 miles away and Polly and I arrived mid-afternoon. We were swept through triage and past a large group of waiting patients to a cubical where someone took blood and measured my O² saturation (90% since you ask) and went through the traditional “We'd better keep you in” chat. Nice though they were, there was no way I was letting myself get trapped in a provincial, non-specialist hospital: Before I'd know it I'd have a tracheotomy and a NG tube. No thank you, I'd take the antibiotics and take my chances. Some friends from home were coming to camp nearby and would arrive on Wednesday and they had said they'd bring the cough machine with them.

On our way out we followed exit signs and went through some double doors towards the car park but found the exit blocked because of building works. We turned around but found the double doors we had come through had automatically locked for security reasons. We went back towards the blocked exit and around the corner to the next set of double doors. These too could only be opened with a security code. Tile were trapped in a corridor. Two elderly ladies sat morosely on chairs."You won't get out that way", they told us with grim satisfaction. Polly and I are made of sterner stuff though and planned our escape with cunning. We waited by the locked door and when someone opened it, looking for the loo, we slipped out, hearing the door click locked behind us, and condemning our unwitting rescuer to limbo and two old ladies. As we moved away I swear I heard a voice say "You wont get out that way." (And was that a cackle?)

Back at the holiday house I began to wonder if I'd made a mistake. My lungs were burning and I couldn't stop coughing. Sucking air in was increasingly hard and I was beginning to feel faint and it was difficult to speak. By the following morning I knew I was in trouble. Polly was seriously considering a 500 mile round trip to get the cough machine or us all packing up and going home. And then, out of the blue, 3 days earlier than planned, our friends Stewart and Catherine and their 4 children arrived with the much needed machine. They'd received Polly's text detailing the situation and had promptly come to our aid, despite having no reserved place to pitch their tent. The cough machine made an almost instant improvement to me. It shifted the by now extremely sticky and hardened mucous and I felt instantly much better.

After a couple of days the antibiotics started to work and for the next week I enjoyed my sunshine and showers holiday with my family and friends. We went to fun places like the excellent Folly Farm and the beautiful Tenby. Our day at Tenby was one of the few purely sunny days of the holiday and was wonderful. I sat on a ramp right next to the beach and read while the children paddled and made sandcastles. On our last day we went to Manor Park, an innovative wildlife park where you can walk through the enclosures along side Wallaby's and Lemurs. When we arrived there was torrential rain and lots of people huddled in cagouls so we ate our picnic lunch in the van and made a dash for it when the rain turned to drizzle. It alternated rain and sun all afternoon but by the end of the visit I was starting to feel feverish.

We stopped at my mum's in Bristol again on the way home which was nice but I was definitely wilting. I made it home and then spent the next 36 hours in bed. The rest you know.

I'm too tired to edit this now so I'm sorry about grammer, spelling, coherence and so on.

Thanks for reading.

Polly in a Polo

Although I like to dominate the medical emergencies in our family I can't claim exclusivity. This week Polly decided to get in on the act.

Polly, for those of you who may not know, is a children's entertainer and actor. Last Thursday she was performing in Silhouette Theatre Company's adaptation of Oscar Wilde's children's story The Happy Prince at a primary school in South London. During one of the rapid scene changes one of the other cast members caught her a glancing blow on the temple with the statue of the prince. She saw stars but being a trooper and faced with a hall full of children she had no choice but to carry on. After the show ended Bob, who had wielded the princely blunt instrument, asked her why she had been holding the side of her head. She told him that he had clonked her with statue and Bob, who is amongst the top five people least likely to hurt someone in the whole country, was duly mortified. Anyway, they packed up and came home.

That night Polly's head hurting but she was sure she'd feel better in the morning. She was performing on Friday and Saturday and there was still the usual round of birthday parties for the boys to attend, shopping and household stuff to do. The headache continued and she complained of feeling nauseous but life didn't stop. By Monday it was getting ridiculous, she was getting very little sleep and we were both getting anxious. That night I put my wheel down. If she didn't feel better by the morning she had to see a doctor. Polly was getting more and more stressed. The consequences for all of us if she were ill were far reaching.

Next morning she headed up to surgery and was diagnosed as having concussion. She was told to go to the hospital to get checked out thoroughly in case there was bleeding on the brain. Bleeding on the brain! Blimey. Polly is an avid viewer of Casualty and Holby City and therefore knows all about the potential severity of a sub-dermal haematoma. She knew only too well that the poor doofus at the start of the program who bangs their head , ignores it, and then feels a bit sick will end up at the wrong end of a scalpel. Usually after wiping out a bus load of school children.

Obviously the doctor in E.R. had watched the same episode and sent her for a CT scan. Which is how Polly ended up on her back lying in side a giant Polo mint.

No bleeding was found and she was told the concussion will fade. The nausea has subsided which is probably as much to do with a reduction in her stress levels as anything else. When she got home she said pointedly, “at least I have medical confirmation I have a brain,” as she surveyed the state of the children I'd been left with.

Tomorrow is Blogging against Disablism Day so please join me here. If you would like to link to this site then please do. Apparently the more linked up I am the easier it is for search engines to find me. Who knew?

See you tomorrow.

The Bowels of St Helier

Now where were we? Oh yes. About to get into bed.

At home getting into bed is no simple matter. In the past I was able to do a side ways transfer on to the bed, but the recent deterioration in the Dystrophy has meant Polly has had to help more and more: this involves a great deal of pushing and shoving and a fair amount of swearing. We have had a ceiling fitted hoist in the bedroom for some years that had never been used. Reluctantly, in the last month or so I've had to submit to using it. Polly attaches a sling around me and hooks it on to the hoist. I'm then winched inelegantly into the air and manoeuvred across to the bed. Polly then attaches the ventilator mask to my face. I lie down and she lifts my legs into position, adjusts the duvet and finally, if she is lucky, collapses into bed herself.

In hospital, with it's teams of nurses experienced in manual handling, you think getting in to bed would be a breeze, a welcome chance to be expertly and professionally whisked in to bed swiftly and with dignity. You'd think.

The nurses fetched a portable hoist and fitted the sling. Hooking it on to the hoist proved something of a problem. The trick is to make sure the hoist is in exactly the right position. and angled precisely. Or alternatively you can faff about like headless chickens and use brute force. At last I'm up and dangling above my wheelchair, which a nurse tries to push out of the way as if it is a manual chair. She can't of course, it is much to heavy. From my elevated position I advise using the joystick control and then watch as it hurtles off around the bay like a demented R2D2.

When I eventually land on the bed I am shifted into the correct position and Polly, who has been looking on with a mix of mild concern and suppressed giggling, finally gets to fit the mask, start the machine, and head for home. I settle down for the night.

Never, ever go in to hospital if you need to rest. You are continually being woken up to take medicine, have your blood pressure and temperature taken, and you are either too hot or too cold. I slept fitfully as the pain finally subsided and in the morning felt much better. A doctor came to see me and explained what had happened. If you are anticipating some exotic complication linked to the Dystrophy prepare to be disappointed.

In the course of of the day I have to take a number of pills, some of which are some fairly powerful painkillers, like Tramadol and Morphine sulphate. Such medicines have side effects, in this case a binding one. X-rays showed a blockage in the small intestine: at last it was official – I'm full of crap.

The cure, as you can imagine, is simple. I was prescribed an industrial strength biological equivalent of drain cleaner. Mr Muscle sink and plug unblocker for the bowel. Sorted. Time to go home. Of course, it is never that simple. I don't know if it is just me but once they get me into hospital they are reluctant to let me go. “We'll just keep you in and keep an eye on you,” said the smiling consultant.

At lunch time Polly arrived with the boys. You could see every one slamming on the assumptive brakes and reassessing me. “Are they yours”, a nurse asked casually. I resisted the temptation to say that I only rented them and admitted they were. Interestingly there was a subtle change in attitude towards me from then on. They also noticed I was reading a novel set in medieval Cambridge at the time of the plague. People started to speak to me a little less slowly and a little less loudly. Even so, the woman bringing the drinks round still asked the nurse if I took sugar.

I was in for another night. We repeated the hoisting business and it only took 20 minutes to put the face mask on. To my delight I found that the TV was working. TV is no longer free in hospital. They have these swish TV/phone combination things that swing round on wall brackets. You speak to an operator and pay to use them. Fortunately whoever had my bed before me had anticipated a longer stay but had gone home before they'd used all their credit. (At least I hope they went home.) The rates are extortionate. The wife of the man in the bed opposite was renewing the credit on his TV/phone and was complaining to the operator about the fact that every time she rang her husband she had to listen to a message telling her how much the call would cost. The message lasted a minute and cost her 39 pence every time. No wonder her husband used his mobile phone most of the time, sitting directly under the sign strictly forbidding the use of them. The nurses kept threatening to confiscate it but he'd nod and smile and carry on regardless. Incidentally he bore a striking resemblance to Donald Sinden, apart from the terrible sore on his leg that was being treated using maggots.

The next day I spent waiting to be discharged and medication to be brought up from the pharmacy. I was discharged at 10.00am but it was gone 5.00pm before I was released back into the wild. It occurs to me that if they employed a few more people to speed up the pharmacy then huge numbers of beds would be freed up hours earlier, more people could be treated and those who were would spend a lot less time waiting. But what do I know.

Despite all my moaning here my foray into the NHS was quite a positive one. I was successfully treated, the staff were friendly and caring, and virtually everyone washed their hands between patients. I'm sure that there are huge improvements still to be made but despite what you may read in the Daily Mail, the NHS is a long way from total collapse. My sincere thanks go to everyone who helped me.

Unless something else happens join me next time when I tackle EastEnders.

Good bye and thanks for reading.

P.S. Do feel free to leave a comment even if only to offer me replica watches and herbal remedies.

In to the NHS

So there I was lying in bed on Saturday night. We'd had a pleasant evening, the boys had gone to bed and Polly and I had enjoyed a curry and watched TV and everything was fine. I'd dozed off but was woken by a dull ache in my left side. I did the manly thing and ignored it. Suddenly I'm sort of sick. I say sort of because what came up was clear but with flecks of blood in it: The pain grew worse. Polly woke up at the sound of me gagging and once she saw the blood realised I wasn't attention seeking. “Oh great”, she groaned. “We manage less than a week with out a medical crisis”. At the crack of dawn she rang the doctor and I stoically endured the pain and gagging. Croy-Doc, our out of hours GP service rushed into action and dashed to my sickbed by 2.00pm that afternoon. He looked at me cautiously and prodded my side and took my temperature and did the usual doctory things. “I'll call an ambulance”, he said gravely.

When the ambulance arrived, the paramedic and the technician looked at me lying in bed and gazed anxiously at the ventilator I was attached to via a hose and face mask. “Can he walk?” they asked hopefully. Once Polly had explained that I couldn't walk, stand, hop, skip or jump they decided to bring in the stretcher bed. My friend Stewart, who is a police officer and regards the other emergency services with respect but with the suspicion that they are only doing the job they do because they couldn't get into the police service, pointed out that they might get the thing in but they wouldn't get it out without tipping me on to the floor. The corners were too tight. Eventually I could stand it no longer and said that I'd get up and into the wheelchair. (You see I'm THAT brave.)

Once in the ambulance they spent several minutes securing the wheelchair. “There”, they said with satisfaction, “That's not going anywhere.” I, on the other hand, was totally unsecured. “What about Stephen?”, asked Polly. “Hold on tight,” I was advised. I did.

St Helier, our local NHS trust hospital, was built in the 1930`s It was originally an impressive art-deco structure, perched at the top of Rose Hill. Viewed from the south it was quite spectacular, so the council built a road on the north side, so now all you see is the back of the building, a rambling jumble of extensions and incongruous new add ons. I was guided into the ER and had a canular fitted to my arm so they could take blood. After a while we were moved to the Clinical Assessment Unit from where I was sent to X-Ray and had an Echo-cardiogram, labelled Nil by mouth and left to watch Polly gleefully drink a cup of tea. Sometime later a doctor came to say they would be admitting me to ward B6. My heart sank. Eight years a go I had nearly died in ward B6, if my sister had not been visiting me and noticed I'd virtually stopped breathing, I would not be here writing this. Polly would regularly come in to find several doses of medication placed out of reach on my locker. The nurses would sorrowfully tell her that I wouldn't take my medicine, “He can't move!” she'd explain again and again. “He didn't say anything,” they would counter. “He has a tracheotomy! He can't speak.”

Eight years a go the ward was filthy. There were specks of blood on the floor and walls. Suction tubes that are inserted into the lungs to remove gunk were used and reused, equipment didn't work and patients with infectious diseases were placed in beds next to patients with pneumonia. I had been moved to the far end of the ward, presumably to get better on own. Instead I caught double pneumonia. Eventually I was transferred to the Royal Brompton Hospital in an ambulance complete with blues and twos.

Eight years later the ward had changed beyond recognition. Gone was the huge single room lined with beds with a nurses station in the middle. Instead the ward is divided in to bays and single bed rooms, the whole place is decorated in a subtle shade of anti-suicide green. The place looked reassuringly clean. I was allocated bed 10, one of four in a bay. They took away the Nil by mouth sign and I was allowed a much needed cup of coffee.

Hospitals are not designed for disabled people. No, it's true. They are designed for the sick, the frail and the injured. Disabled people upset the system. They find it difficult to distinguish between the disability and the illness you've been admitted for. A case in point: my ventilator. I use a machine called a BiPap. It pushes air into my lungs and then negative air pressure draws the air out, the result is that the base of the lung is inflated and carbon dioxide is expelled. Ward B6 is the hospitals specialist Respiratory ward. The nurses are trained in using all kinds of ventilators. Except, apparently mine. The nurses looked at it with a mixture of curiosity and suspicion. The control panel looks as if it has been stolen from the bridge of the Starship Enterprise and the mask has a tangle of webbing that can make the Gordian knot look like something tied by a brownie. The nurses begged Polly to stay and set it up.

The next problem was getting me to bed.

More to come tomorrow if you can bare to wait.

Next time - The Diagnosis

Call An Ambulance

Sorry for the lack of Blogging over the last few days. I've been in hospital. I'll tell you the whole sorry tale tomorrow. Not to spoil the ending for you but... I live.