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A Fox Lake Blog

Why Patients Are Called Patients

The words you dread most as a patient are not ‘time for your injection’ or ‘what’s a suppository?’ Note – this was genuinely asked of me once BY A NURSE – but ‘I’ll just be in a second’.  They will not be a second.  They will not be a minute or ten minutes or even half an hour.  No, that person will disappear without trace for quite possibly the rest of the day.  A nurse once returned to my room a day after I had last seen her with the words ‘Now, where was I?’.  That won’t be too much of a problem if they were in fact about to stick a needle in you but it presents slightly more of an issue if they were helping you wash and dress when they uttered that immortal phrase.  I was once left half naked and shivering, abandoned on my bed for over an hour by a Healthcare Assistant who vanished promising return “in a minute”.

When you require another person’s help to do anything this timewarp factor becomes by turns infuriating and terrifying.  Back when I was in ICU and still on a ventilator, the nurses would disconnect the machine to turn me to be washed.  Then, because there were always competing demands on their attention, even though it was supposed to be one on one care, they would get distracted and wander off to do something else.  For example they’d realise that their flimsy, plastic apron had torn and they’d have to go and get a new one and put it on.  On the way to the dispenser Mildred would ask them where the gauze had gone so they’d go and help her look for it and, all this time YOU WOULD BE UNABLE TO BREATHE.  A fellow inmate of mine observed that it should be made compulsory for staff to hold their breath when they disconnected a patient’s ventilator for any reason and not be allowed to take another one until they had reconnected it.  I honestly think this is a superb suggestion.  When you can breathe easily and are helping Mildred find the gauze the minutes can fly by.  When you are trapped in a bed suffocating, every second feels long and, worse, when you don’t know when the air is going to be reconnected, you can’t move and you can’t call for help, every minute is a terrifying aeon. 

I also learned the art of asking at the right time and it isn’t when the night shift have just started.  Sitting in a chair unmoving for a whole day gets increasingly painful if you have sensation, which I do.  By 6pm you would be desperate to lay down but, with their shift finishing at 7pm, the day staff are rushing to get all their tasks done.  The night shift have a thousand things to get through as they take over so, if you make the mistake of not lodging a ‘help to bed’ booking with the day shift around 4.30pm so that you are on their list no-one is going to be free to help you until about 10pm.  I can tell you that four hours waiting in pain to get into a bed you are sitting right beside is an exercise in fury, frustration and humiliation – not at the staff but at your own uselessness.  On the other hand, it is also a superb driver to work really hard at your physio so you get better at transfers. 

However, before you assume that hospitals are all staffed by people with terrible timekeeping, let me stress that no-one was more acutely aware of the time issues than the staff themselves.  In my time on a spinal ward I had many conversations with harassed nurses and HCAs desperately trying to cover the workload of twice their number as nurses kept on leaving the NHS.  Pay in 2014/15 had been frozen for some time and living costs continued to rise. Meanwhile hospital management had changed shift patterns to eke out numbers.  Previously, at my spinal unit, the day had been broken down into three eight hour shifts.  Now there were two shifts a day – 12 hours each with a half hour overlap for briefing the oncoming shift at each end.  In that 12 hours they got two 20 minute breaks – officially.  In reality those breaks often didn’t happen, especially at night when we had two nurses and two HCAs on duty.  Once upon a time there would have been four of each but with two qualified nurses you only needed two out of the 32 of us on the ward to have an issue and suddenly the nurses would have to forgo their break and work straight through to cover.  That’s if hospital management didn’t pull staff out of our unit to cover on general wards, which they frequently did. 

We had two newly qualified Spanish nurses join the unit as part of the drive to make up the UK recruitment shortfall via the EU when it was still allowed – one of them got pulled off the ward and sent to cover a ward full of dementia patients on her own for the whole night.  She was still in tears about the experience several days later when I spoke to her and swore that if it ever happened again she would resign and head back to Spain. 

Meanwhile other trained staff could work in the same hospital for nearly twice the wage choosing what days they worked if they resigned as full time staff and went and worked for an agency – so, unsurprisingly, many of them did.  

I had conversation after conversation with demoralised people just running to stand still.  Many of them felt that they were no longer able to do the aspects of the job that had attracted them to nursing and healthcare in the first place.  I heard of halcyon days when staff could spend time practising transfers with patients, could ensure that everyone had a shower every day, could do patients’ haircuts or give them a shave, could take them on outings to help them acclimatise to being in a chair, could teach dressing and other things to make them independent before they went home.  By my time, all of this had fallen by the wayside.  I had a shower and washed my hair just once a week and this was because one of the occupational therapists had kindly taken it on as her thing and she was experienced enough to be able to use a hoist by herself and senior enough to ignore the edict that they had to be operated by two staff at all times.  The rest of the time I had to make do with a wet flannel wielded out of a washing up bowl of water.  If I was lucky, two experienced staff would make short work of this, getting me up and dressed in 20 minutes.  Other times it could take an hour if there was just one, less experienced person and especially if that person wandered off halfway through with the line “I’ll just be a minute…” 

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A Fox Lake Blog

Thank you, Stephen Fry

I owe Mr Fry a debt of gratitude although he will be completely unaware of either my existence or of how he helped me survive lonely nights in my first hospital without going stark, staring bonkers.  I had actually met him twice in the years before the accident – once when I randomly found myself standing next to him in the lunch queue at my university college where I played it impossibly cool by completely ignoring his presence and another time in a professional capacity when we were invited to a filming of QI in my days of working in advertising.  However, his real usefulness to me personally came without him actually being there at all.  

One of the hardest parts of being paralysed, especially in the early days in my first general ward but still when I was almost entirely immobile, was waking up in the middle of the night.  This occurred with monotonous regularity for a variety of reasons as hospitals are not restful places.  Someone else in the ward might have a problem or just be snoring loudly, the drugs from early evening can wear off, nurses on night shifts tend to behave exactly like the ones on day shift – lots of chattering and laughing coming from the nurses’ station – or you are actually physically woken to be turned.  It’s not good for the human body to rest in one place without moving and pressure sores are a danger that stalk paralysed people.  We are vulnerable to getting them and, once they appear, due to reduced circulation, it takes a very long time for us to heal.  Scrapes and cuts that would close up in a few days on a normal person can take weeks or even months to do the same.  Therefore all the patients in the spinal wards who are unable to turn themselves over in bed have to be physically turned by the nurses at four hour intervals.  

Since I spent a lot of time sitting on my arse, bedtime usually involved staying on my side to give my bottom a break from the pressure and, since I was unable to maintain that balance on my own with just control of my head and shoulders, I had to be manhandled and ‘arranged’ into a secure position to stop me flopping over onto my back.  Every four hours therefore nurses carrying torches would pitch up at my bedside and, like some covert shop window arranging operatives, would whip out a large number of pillows and bolsters and literally turn me from lying on one side to the other.  As the proxy shop mannequin in these scenarios I had little control over how I was posed. Had the nurses decided to dress me in a ridiculous outfit and hang me from the ceiling there would have been little I could have done about it.  Luckily,  if unimaginatively, they contented themselves with crossing my top leg over the bottom one to give me a prop that stopped me rolling forward, pulling out my bottom arm so it did not go entirely numb over the four hour stretch and tucking a load of pillows in behind me to stop me rolling back.  Two more pillows were put under my head to raise it slightly, my new top arm was left lying on top of the covers and, as swiftly as they had arrived, the nurses would depart leaving me in the dark. This was an efficient and necessary system but it had one major drawback.  It wasn’t comfortable and, once the nurses had departed, there wasn’t a damn thing I could do about it.  By this point I was breathing on my own (HUGE hoorah!) but my diaphragm was still paralysed and my lungs only partially working.  I couldn’t cough or shout for example and I couldn’t either operate the nurses’ call button or the TV remote by my bed. So I was trapped in the dark for the next four hours until the nurses returned for my next modelling assignment. This is not a mental or physical recipe for peaceful sleep; in fact it’s a surefire recipe for gibbering to oneself quietly (I did quite a lot of that) all the way through to a full blown panic attack. Tally of panic attacks in my life before the accident = 0.  Tally in hospital = 4, all of them at night.

Another aside – I don’t know if you have ever had to watch TV whilst having lost the remote control but another fine test of my patience was being left to watch the TV over my bed without the ability to change channels. Breakfast TV was initially a real treat after the sensory deprivation of being cut off from the world in the ICU and High Dependency wards but it is designed for viewers who dip in and out as their different morning routines dictate, not for people who are literally stuck motionless with the screen a few inches from their head for the full 6am-9am stint without relief.  My delight and thirst for news rapidly waned after the third or fourth loop of the same headlines and, particularly, the exact same weather report.  The latter was especially ironic given the weather was utterly irrelevant to me, plonked in a bed inside a hospital as I had been and would be for weeks.  I’m sure that there are far more inspirational tales of those who have recovered function from paralysis motivated by a higher purpose but for yours truly the spur for working really hard on my hand mobility at this time was entirely motivated by the desire to be able to operate the bloody remote control.  Or, alternatively, perhaps this is an apt 21st century motivator.  Back in the early 1900s anyone unlucky enough to get a severe spinal cord injury was placed not in a bed in hospital but into a coffin since that is what they were expected to shortly require, so limited were their chances of survival.  Anyway, I digress.

Back to Mr Fry – or, more precisely, enter another genius idea, this one from my mother – audiobooks.  She turned up for visiting hours one day clutching headphones and a little MP3 player onto which could be loaded stories.  Demonstrating my sophistication and literary bent, I passed over all the classics and chose to have the Harry Potter books downloaded and piped into my ears as narrated by the mellifluous and familiar tones of Stephen Fry.  At lights out in the ward the headphones would be added to my night-time outfit and the ‘play’ button pressed for me.  I would drift off to sleep, high as a kite on my various drugs as quidditch matches played out and then, when I awoke in the dark, in those early hours of the morning when everything seems terrifying, Stephen would be right there chatting about whomping willows and flying cars.  True, he had usually patiently told me all about the goings on of twenty chapters or sometimes the whole rest of the book whilst I’d been ungratefully unconscious but since I had actually read all the novels, this did not bother me in the slightest. The comfort factor of having something to anchor me and to take my mind off the discomfort and the fear was priceless.  For two weeks we worked our way through the Potter canon in probably the most random fashion due to the nurses and I struggling to remember which chapter or book we had started or finished on and my habit of falling asleep regularly in the middle of it but I can tell you that it is impossible to panic with Stephen telling you a story.  

After a few weeks of much better sleep and remote control motivated hand therapy, I had regained enough movement in a few fingers to be able to press buttons or, as sometimes was necessary, to hold something whilst I used my nose or chin. This now meant I could now operate the call button at night and this small piece of independence and ability to make myself known to the nursing staff even from the far, darkened corner of my ward, meant that the night-time fear receded significantly. But still, from the bottom of my heart, thank you, Stephen Fry. 

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A Fox Lake Blog

Please Be Upstanding

After being horizontal for weeks, the day arrived when a consultant turned up at my bedside, surveyed me for a bit, spoke to the nurses in High Dependency and then told me that it was time I was put on the tilt-table.  “The what?” I said, in my Dalek voice, whistling through my speaking valve.  “I thought” said the consultant “you had expressed a wish to get out of bed?”  “I have” I responded “but I thought I’d be doing that in a wheelchair.”  The consultant rolled his eyes and explained that, having been horizontal for so long I could not be simply whipped out of bed and stuck in a chair as I would just immediately pass out.  Yet another consequence of a cervical spinal cord injury is having very low blood pressure and in combination with lying down for a considerable time, any physical elevation greater than a few pillows would see me swoon like a Victorian maiden within seconds. Therefore I would have to be reacclimatised to a semi-vertical state a bit like astronauts are acclimatised to G forces via enormous centrifuges but in a lot less exciting manner.  NASA would certainly laugh at the tilt-table.  It was, as its name suggests, a table that tilted.  It also had a few straps to stop people tilting out onto their face on the floor but that was the full extent of its technical complexity. 

Now, before we begin I need to do a quick rundown of blood pressure ranges, for those of you not au fait with what constitutes ‘normal’ through ‘this one’s about to faint’, ‘this one is definitely unconscious’ to ‘this one’s probably dead’.  If anyone is interested in my scale the other way it goes ‘this one is a bit stressed’, ‘this one is me fighting with a carpark ticket machine’ and ‘this one’s head just exploded’, just FYI. 

Blood pressure is measured in millimetres of mercury (mmHg) and is given as two figures – systolic pressure, the pressure when your heart pushes blood out and diastolic pressure, the pressure when your heart rests between beats.  These are shown as one over the other – ie an ideal blood pressure is considered to be between 90/60mmHg and 120/80mmHg.  High blood pressure is anything 140/90mmHg or over and low is considered as 90/60mmHg or under.  For the purposes of this story you may now immediately forget the high blood pressure stats as entirely irrelevant.  We are not going to be frolicking in that ballpark.

The procedure for the tilt-table was pretty simple. it was brought alongside the bed and the guinea pig (ie me) slid across from bed to table.  Like a lunatic in an asylum I was then affixed to the table by the means of leather straps around my chest, waist and legs and a blood pressure cuff attached to my arm.  From horizontal a small dwarf (it might have been a physio but I couldn’t see to verify and a dwarf would have been in keeping with the whole medieval torture chamber vibe) would work a crank handle to bring the table through various stages of tilt until a full vertical was achieved and whilst I was winched through the various angles my blood pressure would be taken at each interval to assess how I was coping and that I was not about to vomit or pass out or both.  Nobody is expected to get to vertical on their first go and the idea is that you do a session each day, slowly building up your tolerance.  My session did not start well when my initial, still horizontal blood pressure reading was taken.  I can’t remember what the diastolic reading was but the systolic was 76mmHg.  Consternation ensued as there was some general rule of thumb that if the patient’s blood pressure was lower than 80 then the experiment, sorry, exercise, had to be immediately stopped.  Noises were made about abandoning the whole attempt and putting me back in bed.  Dalek-voiced me was, luckily, able to interject at this point.  “If my blood pressure is already too low to go on this then how on earth is it going to get any higher?  I can’t stay in bed for ever”.  There was a silence so I helpfully added “Besides, it says you have to stop if my blood pressure is below 80.  It doesn’t say anything about not being able to start.” Let no-one say I wasn’t learning how to navigate the NHS. Everyone looked at me, then at each other.  Then they exchanged medical looks that could be basically translated as “f*ck it, let’s give it a go’

There was a creaking noise and I was slowly tilted about six inches.  My blood pressure was taken (still 76) and I was asked whether I felt faint.  I didn’t.  We cranked another six inches, BP dropped to 73, there was some flapping, I loudly told everybody I felt FINE, thanks so we carried on. Rinse and repeat another couple of times. There was however a slight hitch in my assurances – I had never fainted before so I had no idea of the warning signs and, in my attempt to get vertical as fast as possible so I could get out of bed into a chair,  I *might* have been exaggerating how well I felt.  To be fair I probably should have worked out that a loud ringing noise in both ears was not ideal, especially when coupled with my vision going white and a rising tide of nausea.  In the end however my attempt was stymied on the fifth tilt when my bp dropped to the low 60s and I apparently turned grey with blue lips whilst still declaring, by now somewhat feebly, that I felt fine despite not being able to see or hear properly and being on the verge of upchucking rhubarb yoghurt over everyone.  I was hurriedly returned to my horizontal state and then to bed,  much to my annoyance. 

Ultimately it took a few goes on the tilt table over the next days before I became completely vertical.  I still caused much medical consternation with my ridiculously low blood pressure but we reached a compromise whereby, probably very much against  guidelines, we ignored the verifiable data of the bp cuff in favour of just taking a judgement call on how grey or not I had gone before desisting. Once upright I then had to literally stand around for increasing lengths of time to get used to it.  This led to some alarmed looks from various ward visitors who had to walk past this bizarre figure randomly strapped to an upright table, still garbed in a natty hospital gown.  Some would smile at me nervously and some would just stare rudely. I took great pleasure in saying “Hello” cheerfully in my Dalek voice to the former and “Exterminate! Exterminate!” to the latter. Arf.

Eventually I succeeded in being allowed into a wheelchair and my exploration of the hospital beyond my HD ward began. I remember the first trip very clearly – Dad took me to Costa where I got to order a mango smoothie and sit chatting at a table once again like a member of the human race.  I couldn’t move below my shoulders and only had one half-functional hand but I was up and I was dressed and a kind nurse had done my hair and I wasn’t bloody dead.  Given what I had already been through, that felt pretty good to me. 

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The Barbara Bus

As you may have noticed I am attempting to give all of my chapters amusing or, at the very least, intriguing headings.  With this chapter there was no need for me to make any effort whatsoever because the Barbara Bus was already called, well, the Barbara Bus. For those of you not in chairs the idea that the average car and person in a wheelchair are not terribly compatible sizewise has probably never crossed your mind.  One of the key skills you have to learn as a person in a chair is how to transfer to other places like your bed or a plinth or into a car.  The lower the injury and the more upper body function you have and – not to put too fine a point on it – the less you weigh the easier this is.  For me, with a cervical injury and limited hand/arm function and absolutely no torso function, transferring anywhere at this early point was something I was not very good at.  Whilst I weighed barely six stone, I was still very weak and my muscles terribly wasted.  One of the key initiators of a transfer is to get your weight to a tipping point which you then use to lever yourself out.  This is usually achieved by first leaning your head and shoulders forward which, in my case, saw me simply topple towards the ground headfirst, the talent that had got me here in the first place.  So, crap/dangerous as I was any transportation of me would require a vehicle big enough into which I could simply be wheeled, chair and all.  Enter the Barbara Bus. 

The BB was the inspired idea of S.U.R.F (Spinal Unit Recreational fund), the hospital’s own charity to provide outings for patients of the spinal wing.  Run by current and ex patients and kindly staffed by the nurses and healthcare assistants in their own time, the charity had raised enough money to buy a minibus which had been specially adapted to take a wheelchair and occupant along with a number of their friends and family.  It had been named after the Barbara who had helped raise most of the money for it and was in high demand given there were quite a few patients in the wing like me who had not mastered their car transfers.  The BB was our only available method of transportation if we wanted to go out of the hospital and experience some of the outside world again so getting hold of it for the day or evening involved having to be pretty quick getting your name down and booking it.  I had been in the hospital several weeks before I even found out about the bus and it was several more, involving form filling in, the attending by Himself of a training course and production of driver’s licenses and insurance forms, before he was pronounced safe to drive and I managed to book a space.  After three and a half months of being incarcerated I was finally getting out.  Where did I choose to go for this momentous trip?  Leeds.

The Saturday finally rolled around grey and cold and it was the temperature that first hit me as I was pushed out of the doors.  Hospitals are usually super heated and having not been outside in in over a hundred days, I hadn’t experienced anything lower than a steady 30 degrees for some time.  The second thing that assaulted my senses was the air – it was moving, the breeze hitting my face and moving my hair about.  This isn’t something that happens to you inside a hospital ward either – at least, not unless you’re really unlucky.  It felt both incredibly normal and very alien at the same time.  Finally, I could smell the outside.  Car fumes, wet tarmac, damp earth – and the noise – birdsong, traffic. I felt overwhelmed and terribly vulnerable, trapped in my enormous hospital chair that I could barely push myself along smooth hospital corridors.  Outside even that tiny bit of independence was taken away as the ground is neither smooth nor flat in the real world. Pavements are full of cracks and uneven paving stones that trap the small front wheels on a chair, most are on a camber to allow rainwater to run off and even the smallest incline, probably not one you would even notice on foot, becomes a herculean struggle.  On the other hand, gentle down slopes see you gathering alarming speed like an out of control juggernaught without brakes or any of those nice run-off pits filled with sand.  I clutched my knees – rugged up like those of an old lady – to stop myself being tipped out and allowed Himself to push me to the back doors of my chariot.  He opened the back door.  I sat there shivering.  He then climbed inside and started unfolding ramps and pulling levers and unravelling long lengths of seatbelt webbing ending in metal clips.  This continued for about ten minutes.  Then my wheelchair was carefully positioned along the assigned wheel ramps and, with unnecessary straining noises, Himself wheeled me up into the back of the bus. Once ensconced my brakes were applied and then I waited another ten minutes as the requisite safety tying down took place.  Levers were locked into position, webbing threaded through my wheels etc – suffice it to say that, by the time the process was completed, that wheelchair was not moving, even if we hit a wall at 70mph.  There was just one teensy thing that the safety police had overlooked – the fact that I was not attached in any way to my wheelchair.  There I was, quite literally on the loose, raised on a platform at the back of the bus with an unimpeded trajectory of approximately 15 feet to the windscreen.  My precarious perch was made even more so by the fact that I had no hand grip to hang onto the arms of my chair nor any torso control to stop myself lurching in whichever direction the Barbara Bus turned.  Himself, a veteran of no less than four Speed Awareness courses, clambered into the driver’s seat.  “Ready?” he shouted cheerfully and not waiting for my answer, he set off.

Having a solid back to my chair, this initial momentum merely threw me backwards into it.  Braking to exit the carpark saw me scrabbling to stay in the chair and the initial turn out of it left me hanging off one side.  Fifteen feet away, oblivious at the front of the BB, Himself hummed cheerfully as he accelerated away up the road. From my lofty position I had an unimpeded view of what was coming as we bore down on a roundabout.  The brakes went on again, I scrabbled, we hung a left into the roundabout and I hung out of my chair to the right.  We went round the roundabout fairly swiftly, the momentum of which pushed me back up and then we were off once more.  My brain, institutionalised as it had been indoors for three and a half months, struggled to compute this tidal wave of light, noise, open space and, most of all, momentum. I felt much like someone plucked out of the 17th century and placed in a modern motorcar for the first time.  “Could we”  I gasped, breathlessly “slow down a bit?” It was here I encountered the other drawback of the Barbara Bus.  It’s a bus.  So Himself could not hear my querulous pleas from the back over the engine noise and vast distance between us as he barrelled along.  With my excellent view I watched the motorway slip road loom and we accelerated away up to a brain-frying top speed of 65mph. Never has anyone wanted to get to Leeds more. 

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Learning To Breathe On My Own

Terrifyingly I actually already knew that the above heading was a song title by Nerina Pallot, which only goes to show either how full of utterly random junk my brain is or an extremely questionable iPod collection – possibly both.  If you google this phrase (and I have – no stone left unturned on this research front) you will find that it is indelibly associated with freedom, independence and a oneness of body and soul.  It is also portrayed as a peaceful and enjoyable experience.  In my case this is half true.  Attached as I had been to a) one half-hearted ventilator, b) one over-enthusiastic ventilator and last by by no means least c) one murderously silent ventilator that kept trying to kill me, the concept of literally learning to breathe on my own definitely heralded freedom, independence and the inevitable mixed emotions inherent in parting from the dessert spoon that had saved my life.  It could not, by any stretch of the imagination however, be described as ‘peaceful and enjoyable’.

(It wasn’t the most painful experience I had in hospital though.  That honour was taken, by some considerable margin, by the experience of having my hair brushed after being in the ICU.  If I tell you that its competition includes having holes drilled into my skull, inserting screws and hanging weights from them to put my neck into traction and straighten it out, that might give you some idea of the scale of the pain. Two weeks of lying down, thrashing my head about and sorely neglecting my grooming routine left my hair tangled, knotted and matted with God knows what.  No less than three members of staff descended on me armed with comically named ‘detangling’ combs in one hand and bottles of some kind of unguent in the other.  I was liberally squirted with liquid and then they set to.  Out of the kindness of their hearts they were trying to save me having to have the whole lot shaved off but after three or so hours of having my hair tugged and pulled my scalp was screaming and I would have willingly waved goodbye to the whole bloody lot if – as ever – I had been able to speak and make my wishes known.)

The first attempt in removing me from a ventilator actually came very shortly after the accident.  Before I had gone into the op to stabilise and rebuild my neck, I had been able to breathe unaided – hence why I had survived the 24 hours between hitting the ground and being wheeled into theatre.  Intubation from the surgery was not a viable long-term solution so I either needed to go back to breathing solo or go back into theatre to have a tracheostomy.  The attempt to do the former was carried out with military efficiency and a corresponding military ‘cuddle factor’. Drugged up to the eyeballs I was roused from my induced coma, someone loudly instructed me that I was to breathe and, without further ado, my tubing was pulled out.  I tried to suck in air.  Nothing.  I tried to suck in air again.  Still nothing.  I sat with my mouth comically opening and shutting like a landed fish to much the same effect.  “Come on, come on.  Breathe!” admonished the consultant on duty as though I were merely being recalcitrant in failing to supply my lungs with critical oxygen. “Try harder!” he instructed.  I miserably failed again.  The consultant tsked at me and unceremoniously the tubing was shoved back down my throat.  

As it turned out, operating on or around the spinal cord, however carefully done, can cause more trauma and shock post surgery and this is what happened to me.  I went in able to breathe, move both arms and use my right hand.  I came out completely paralysed from the neck down with both hands curled into unusable fists.  The day after my landed fish impersonation a hole was cut into my trachea through my throat (the aforementioned tracheostomy) and the ventilator tubing attached to that rather than being through my mouth and down.  I can report though that this was done with anaesthetic and a scalpel by a proper doctor and not violently with a Bic biro by an untrained but yet bizarrely knowledgeable action protagonist like in most movies.

Cut to nearly four weeks later and it was time for take two.  This version was hugely aided by the fact that I was now fully conscious and grimly determined to rid myself of my ventilator.  My one ambition in intensive care had been to be able to take a lungful of air – it’s extraordinary not to mention sobering how much the horizons of your desires contract in extremis – and I hung onto this thought as the nurses prepared to disconnect me intentionally this time.  The plan was that I would build up my capacity in five minute segments twice a day meaning that, on the first attempt I had only to manage for five minutes with a nurse right beside me.  As it turns out, the secret to learning to breathe on your own is to not try too hard.  It might not look great on an inspirational tea towel but it is effective.  Calmer and under control in a lit room, I found that I was able to breathe very shallowly as long as I didn’t get panicky or greedy and try and suck in too much air.  The panic however still hovered at the edges.  Trying to activate intercostal muscles that had not been used for weeks was exhausting as was employing the willpower required.  I lay grimly watching the clock on the opposite wall tick away the slow minutes, determined not to give in early but also very eager to get to the end so I could stop. 

The rest of the week went the same way and by the end of it I was happily disconnected from the ventilator for more than half an hour twice a day.  I then upped the ante, jumping straight to an hour as my next target.  I was spurred on by the news from a consultant that, on average, this process took around three weeks before people could breathe unaided all day so I worked hard – if sucking in air grimly whilst watching a clock can be classified as ‘working’ – to get to the full day goal in under two weeks. There was also one other major advantage to being able to inhale on my own – at least, to me if not anyone else – I got my voice back.  This was done by means of what’s known as a ‘one-way speaking valve’, an accurate term in my case as, once I started talking again after nearly a month of enforced silence, no-one else was getting a word in edgeways.  However, the ‘one way’ bit is supposed to refer to the fact that the valve only opens to let air in.  When you breathe out, the valve closes thus forcing the expired air to pass out the only other available exit – up the trachea and over the voicebox, enabling speech.  It doesn’t look like much, resembling a type of grey, plastic plug that goes into the tracheostomy hole but oh boy did it mean a vast amount to me.  Not only did it restore my power of speech but as well as my similar inability to negotiate stairs, it gave me a voice like a dalek.  In these creepy tones I immediately took to cross-examining my mother (who happened to be the first unfortunate visitor present when they put the valve in) as to just what the hell had happened to me since I fell off the horse.  I was astonished to find that I had effectively ‘lost’ three weeks of my life and that we were now well into August, disappointed to learn that there had been no party in the ICU involving plastic bananas and a giant pair of scissors (or so she claimed), heartened to be able to actually start reasserting a tiny amount of control over my circumstances and vitriolic about the food.  The speaking valve also helped enormously with my breathing exercise since whilst rabbiting incessantly I stayed distracted and relaxed so the time off the ventilator flew by.  No doubt my interlocutors had an inverse experience and I suspect that some may have entertained thoughts about hiding the valve at times but, in my defence, I did at least demonstrate a greater conversational range than Clucking Man, if not his sense of timing and occasion.

Unfortunately all this chatting and breathing did not mean that I could remain off the ventilator overnight – sleep apnea is common with cervical injuries and I was too much of a newbie at this breathing lark to be allowed to stay nocturnally unconnected for another week.  I WAS, however, able to bid goodbye to the spoon at this point.  I’d like to tell you that we had a small party with champagne in paper cups and an impromptu speech encompassing the spoon’s best bits but what actually happened is that, much like a dodgy ex-boyfriend, it didn’t get bandaged into my hand one night and disappeared without trace, leaving no forwarding address.  

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Faecal Attraction

Upon my arrival at my second hospital I received for the initial few weeks of my stay the luxury of a private room.  Unfortunately this was not because I had been upgraded but so I could be screened for MRSA infection before being released into the wild of the open dorm.  I had my own bathroom, a glass wall onto the internal corridor which could be closed off with a blind, a door, the obligatory set of colourful privacy curtains and, facing out into a little internal patch of grass, a floor to ceiling window with a small ledge at ankle height.  Upon this ledge I placed the cards I received from friends and family and a small pot plant that someone had kindly brought.  The pot plant resided with me peacefully for a week before it was aggressively confiscated by one of the cleaning staff who informed me that it was ‘dangerous’ and had to go.  “Is that due to the risk of bacterial contamination from the soil?” I hazarded.  “No” came the response “It’s because it might fall off and hurt somebody”.  “But it’s at ankle height” I pointed out, futilely, as the plant was unceremoniously whipped away.   Later I encountered it in the cafeteria where, presumably, it must have been subject to a health and safety briefing as it now resided smugly on a ledge at shoulder height and remained there for the length of my stay.  As far as I know, it did not kill, maim or otherwise injure anyone from its lofty vantage point. 

On my first night in my room I enjoyed a blissful eight hours of solid sleep.  It was the first time in two months that I had not been trying to slumber surrounded by a combination of neon lights, snoring ward mates, chattering staff or beeping machines (Honourable mention of course goes to my murderously silent ventilator from which I would have welcomed slightly more effort). Finally I had a dark, quiet space and I slept the sleep of the exhausted.  On the second day I encountered the BCW.  

She announced herself a little like a villain in a movie by sending fluttering down from her room above mine a signature calling card.  In fiction this is a monogrammed handkerchief or cryptic symbol.  In real life – ie for me – this was a pair of brown-stained knickers.  I watched them caught by the wind temporarily, like that plastic bag at the beginning of American Beauty, only with less artistic effect.  They came to rest right outside my window, gusset side up.  I collared a passing member of staff who surveyed the stained knickers with the air of one who has seen many such pairs in her time and said “Oh she’s at it again, is she?”  “Who is ‘she’?” I asked.  “I have no idea” came the answer.  “But the ward above us is for the mental patients and this one likes to throw stuff out of her window.” Joining in the blunt nomenclature, I promptly named my neighbour above the Batshit Crazy Woman. 

Over the next few weeks I was treated to an art installation the likes of which the Saatchi gallery would have paid millions for.  Each new exhibit was first announced by the BCW with what sounded like a full scale riot upstairs.  Thuds and low groans would be followed shortly by what sounded like all the furniture being thrown around, Keith Moon style, accompanied by screaming.  This would last only a few minutes before the sounds of running footsteps and muffled shouting would filter down – presumably a handful of professionals armed with restraints and loaded hypodermics entering her room with intent.  Then silence.  About ten tension-filled minutes would pass before a new artwork would make its lonely yet eloquent wind-borne way down to outside my window.  Along with the ‘Life is Sh*t” panties, I was fortunate enough to be treated to the artwork ‘Blood is Thicker Than Water’, a study in human relationships laid starkly out on a used sanitary towel,  ‘I Will Not Succumb to the Injustice’, a brave defiance to all oppressors, created skilfully using a canvas of cotton worn close to the crotch for what appeared to be several days, ‘Inside I’m Bleeding’, an eloquent cry for recognition presented on a soaked tampon and ‘Rise Above’, an exhortation to try harder symbolised by a bra in one cup of which nestled a small turd. 

It did not appear that our little scrap of outside space merited cleaning and/or gardening very often so I was able to enjoy the full majesty of the BCW’s exhibition laid out before my window for at least a week.  I contemplated taking some photographs and having postcards made up, perhaps even a run of limited edition prints so that visitors could take a little piece of the magic home with them to put on the fridge. Unfortunately my ambitious plans to cash in were stymied by my inability to both hold and operate a cameraphone with only half of one hand and no torso muscles so I’m sorry to recount that the BCW’s efforts were not recorded for posterity.  Eventually, she hit an artistic fallow period (or more powerful drugs) and her messages ceased to flutter down to her awaiting public.  One day the exhibition was unceremoniously bundled into a black binliner and spirited away.  I like to believe it went on loan to the Tate Modern.

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Waiter!

Hospital food holds a reputation for being pretty inedible.  In the first hospital I graced with my presence, this was literally true.  The first three weeks involved not eating anything at all since I was full of tubes and fighting for your life, it turns out, burns quite a lot of calories.  ICU and High Dependency saw me drop the best part of three stone in three weeks – I was like one of those facebook ads for an improbable diet that promises spectacular results inside an impossible timeframe.  Once my feeding tube was removed, the ingestion of real food could start again.  The first thing I ate was a rhubarb yogurt and it tasted wonderful.  My throat was too sore to start chucking anything  robust down it so ice cold yogurt was perfect and I consumed a number of these for the first two days thanks to my mother feeding them to me.  Then there was quite a lot of muttering about needing to build me up again, a hospital menu was produced and I was urged to choose some ‘proper’ food.  I can’t remember what I selected via nodding for my momentous first meal but I can remember what happened next.  Namely, the arrival of food was heralded by the rattling of a trolley full of trays and plates with metallic covers to keep the food vaguely warm.  The dinner lady and her trolley swept into our ward and the appropriate dishes were efficiently distributed to the correct beds.  I watched as my tray was placed upon my small table, which was at the bottom of my bed.  Paralysed from the neck down, save for one arm, I regarded my lunch from the distance of six feet for around 90 minutes whilst my fellow unparalysed ward mates scoffed their food.  Then the distant rattling heralded the return of the nice dinner lady, who swept up my tray and disappeared again.  This went on for a few days.  Unsurprisingly, I did not gain any weight during this time.  

A nutritionist pitched up at my bed whilst my mother was visiting one afternoon and delivered a lecture to her about the fact that I needed to put on weight.  Tracheostomy tubes down my trachea and therefore still unable to speak, I regarded her balefully as my mother took the proffered menu and chose the heartiest and most calorific option on it.  Along with my breakfast, this was duly left at the end of my bed again the next day for me to stare at.  Ironically I lost even more weight as I was no longer being given liquid food either and a few rhubarb yogurts a day were not really cutting it in the nutrition stakes.  Once again, not being able to speak was proving deeply inconvenient, especially when added to not being able to move or breathe either.  This unhelpful turn of events eventually came to an end on the fourth or so day when my mother arrived for visiting hours – which began at 3pm – to find my untouched lunch still sitting under its little metal hat, having not been collected that day.  Maternal questions were asked along the lines of ‘why hasn’t my daughter been fed her lunch?’ and an answer came along the lines of ‘nobody’s asked us to feed her lunch’. 

After that, I was added to the ‘needs food spooning into’ list but there were quite a lot of us on the overall spinal ward that fitted that description so by the time someone got to me, my food, despite its hat, was stone cold and the palatability of the cuisine had a corresponding relationship to its temperature; when one went down so did the other.  My first feeding day went badly when, after one spoonful of cold chicken in congealed mustard sauce, I refused to open my mouth for a second one.  Given it had by now been the best part of a week without much to eat, that tells you something either about how fussy I am or how truly dreadful the food was.  Or possibly both. My mood over the whole situation was not improved by one of the nurses informing my mother, in front of me, that I might be ‘refusing’ food as a way of re-establishing control. Apparently this can be an occurrence with paralysed patients who fight to try and gain some small measure of independence back in the face of overwhelming powerlessness. Lacking control over most of their body, they can at least control whether they open their mouths or not. In my case, however, it was once more a case of things being bad enough that I was buggered if, after three weeks of not eating, I was going to chew my way through anything that made me retch. However, I was not able to voice this opinion either and so sat glowering in my bed with jaw firmly clenched closed instead. It was at this point that my mother took over and heroically for the next month carefully prepared, cooked and brought in something for me to eat every single day until I moved to my second hospital which was practically Michelin starred by comparison – but more about that later.

Once I was out of bed and decanted into the world’s largest and heaviest wheelchair I was also able to visit the external food franchises of the hospital as well as the actual canteen.  The former consisted of a Costa coffee and a very small M&S food shop and it was almost impossible to get anything vaguely healthy to eat, despite being in a hospital.  The Costa’s menu consisted almost exclusively of gigantic portions of the most sugar and fat filled foodstuffs available to man.  There was something that resembled a Tunnock’s teacake but that was about the size of my head, a chocolate Rocky Road square that was probably a week’s worth of Weightwatcher points in one go and a Millionaire’s shortbread fit for a Russian oligarch.  Meanwhile, over at the M&S, there were sandwiches of all hues laden with mayonnaise (I know this because I spent quite a long time trying to find one without – see possibly fussy, above), crisps, flapjack and cake of many types.  However my particular favourite were the hospital vending machines.  These all sported stickers on them about cutting down on sugar and fat whilst, to a machine, being stocked with nothing except chocolate or crisps.  These choices did nothing to make it easier to fulfil my consultant’s recommendation that I consume around “90g” of protein a day.  For comparison, the DRI (Dietary Reference Intake) is 56g a day for the average sedentary man and 46g for the average sedentary woman and there was no doubt that I qualified as sedentary.  I don’t actually know how many grams of protein a head-sized Tunnock’s teacake contains but I’m willing to bet not enough.  Actually managing to eat double the normal daily allowance proved therefore to be rather tricky, given the choices on offer.  Eventually we invested in several tubs of protein powder that were added liberally to drinks, smoothies and rhubarb yogurts in an attempt to meet my quota. 

When I moved to my second hospital for rehabilitation, the spinal ward had its own canteen and its own menu.  My hopes were not raised overmuch on arrival by discovering that the offering for the following day was faggots in onion gravy but luckily a more savvy inmate flagged to me that there was also an ‘ethnic menu’ and this turned out to be twenty times more interesting, varied and tasty than its native cousin.  You could choose from a number of Indian, Caribbean and Halal options if faggots in onion gravy wasn’t your thing and all of them were delicious.  To be fair, most of the native options were also pretty good, all things considered – this despite me sitting next to one inmate who regarded the arrival of the chef bearing serving dishes suspiciously. “Is that the fella what cooks the food?” he asked me.  “Yes” I answered.  “I’ll send him a get well card” came the response. 

The dining room at my new hospital was the social hub of the spinal wing.  Dedicated only to those with spinal injuries, it was the one place that all of us gathered together at the same time.  Lunch was the main event – breakfast was served in the ward, literally in bed for most of us . (Whilst this is traditionally seen as a desirable thing, after seven or so months of trying unsuccessfully to spoon cereal into my mouth in bed without getting it all over me, I celebrated the morning I finally got to eat breakfast sitting upright at a table.  I commemorated this event by tweeting the news to my twelve followers.)

Dinner was more sparsely attended as visiting hours were 3-8pm and many made their escape out during this time to either eat in the main hospital canteen or out out for those that had already learned to car transfer or who had hired a wheelchair taxi.  Lunch is where we got to meet each other properly, chat, commiserate and ask questions.  There was very much an esprit de corps – all of us had been through serious trauma and many had skirted death.  Now we faced a future that was totally unlike any we had ever envisaged for ourselves and full not only of frustration, pain and difficulty but stalked by the dangers that accompany being paralysed.  As one veteran of a high cervical injury put it to me, “Being unable to walk is the least of a spinal cord injury”. From various places and backgrounds, we were united in our predicament and this allowed full and frank discussions, the likes of which are usually off limits in any situation – never mind whilst you are eating.  We talked of pressure sores, bowel movements, sepsis, nerve pain and urinary infections whilst spooning in lasagne with peas or apple crumble with custard. I did also once have a conversation with one gentleman about erections but this was at least in the gym.  I’d also like to point out it was NOT instigated by me. Only a few of us were quadriplegics with limited or no hand function and the paraplegics happily helped us cut up our food or, in some cases, also helped spoon it in for some who had no hand or arm function.  This took one task away from the nurses who could then go and feed those still bedbound and also ensured that, in this unit, nobody suffered from either going hungry or having to eat their lunch stone cold. 

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Somewhere Inside Me There Are 21 Meals MIA.

There’s nothing like being in hospital to bring home to you just how much you are an organic being.  Hospitals and all the professionals in them are extremely interested in any secretions you have but most of all they appear obsessed by poop.  Every day a record was taken in the unit of not only whether we had pooped but of what size, colour, consistency and volume said poop was.  Sizeable deposits were greeted by murmurs of approval, sometimes even of congratulation, whilst, in contrast, pitiful attempts were accompanied by the shaking of heads and sorrowful looks.  To be fair, it IS pretty important, as it was explained to me, that spinal patients are not allowed to back up, as it were, since being full of waste can, eventually, cause a toxic reaction, a poisoning from the inside out.

So imagine the disappointment when one day I failed to produce anything.  The nurses on duty noted this failure on their chart, shook their heads sadly at me and let me know, by voice and deed, that they felt let down by my performance. 

The next day came.  I failed to produce anything again.  They tsked at me.  “Are you eating properly?” I was asked.  “Er, yes” I replied, if by ‘properly’ you mean with one spacca hand and hospital food”

There was muttering as they consulted.  “We’ll give you another day”  I was warned “But if you don’t do anything tomorrow you’ll have to take a laxative.  Make sure you eat.”

I duly consumed another three meals.  The next day rolled around.  Nothing.  More shaking of heads and noting on the chart followed by the production of my first ever sachet of laxative – some orange flavoured powder entitled ‘Movacol”.  This was mixed with water and down it went to do battle with my recalcitrant colon. 

“How many of these am I going to have to take?” I enquired, not being a fan of half pints of artificially orange flavoured liquid at the best of times. “Another one tonight should sort you out nicely by the morning” I was promised. 

The next morning rolled around.  Nada. I was now on my fourth non productive day and twelve disappeared meals.  Reinforcements, in the form of the doctor on duty, were called in.  “Up the Movacol to two sachets this morning and again tonight” he said.  “What happens” I asked “If that doesn’t work?”.  “Oh it’ll work” he informed me “and in the unlikely event it doesn’t we have a nuclear option available to us that never fails.”  Everyone laughed knowingly at this except me. I eyed them all darkly whilst I imbibed a whole pint of fizzy, orange liquid.  I ate three more meals.  I drank another pint of FOL.

Day five in the house.  Nothing.  The disappointment had now morphed into genuine concern tinged with puzzlement.  My Movacol tally was at six sachets (from memory the blurb on the back promised surefire results after two), I was now fifteen meals down without result and people were starting to ask me questions about how I was feeling (fine, thanks), did I have tummy ache (nope), was I experiencing any signs of autonomic dysreflexia (luckily, no). 

(Here comes another science bit – autonomic dysreflexia is a potentially life threatening condition common to those with SCIs. Devoid of proper sensation to identify problems – such as being chock full of poop – the body can react by blood pressure rising.  Symptoms usually include a crushing headache and can involve shivers, chills and nausea.  If the offending issue, which can be as simple as too tight clothing, is not dealt with then the blood pressure just keeps on rising and you are then into a medical emergency with strokes and and death being potential outcomes.) 

My temperature was taken, my eyes were peered into, my FOL serving went up to three pints (six sachets) that day and my card was marked as an oddity.

Day six.  Nothing. Three more meals, six more sachets of Movacol, administered now with an air of desperation. 

Day seven.  Everything was fine.  Just kidding.  Once again, nothing.  The doctor was called once more and my eighteen vanished meals along with my matching eighteen sachets of the now ironically named Movacol recounted.  The doctor looked at my chart, then he looked at me, then at he looked at my chart.  “Well” he said, with the air of one taking a hard but necessary decision “I guess we are going to have to Picolax her.”

There was an audible gasp from everyone in the room except me.  I understood from the reaction that this must be the nuclear option referred as almost never resorted to earlier.  The Cold War with my colon was over and the gloves were coming off. (Metaphorically, obviously.  The LAST thing you’d want to do as a medical professional in this situation is take your gloves off.) A nurse was dispatched to the pharmacy, presumably with a locked suitcase chained to her wrist, to acquire some Picolax.  She returned, bearing the box gingerly, as well she might.  Picolax is the stuff they give you to ‘empty the bowel’ before something like a colonoscopy.  Given we have multiple metres of bowel inside us, this is already quite an impressive production of poop – one that would score a full 10 out of 10 on the poop chart and a standing ovation from the nursing staff.  If, however, like me, you are currently storing six days of poop in your bowel, well, you could probably decorate the room.  I read the instructions on the back.  “Add this sachet to 150mls of water and dissolve.” so far, so normal.  “The water may become warm” WHAT??!!  Holy cow, what the hell is in this stuff that its chemical reaction with good, old H2O is enough to produce heat?  “I’m not sure…” I started.  A nurse held out the, presumably warm, glass “Drink” she instructed.  I drank and my status changed.  Pre-Picolax I was a constipated patient.  Post-Picolax I am now an unexploded bomb.  The nurses edge nervously towards the door.  “How long will this take to work?” I asked, worriedly.  “We don’t know” they replied, equally worriedly “But we would advise staying in your room”. 

I sat in my room.  The hours ticked past.  The whole morning went past.  Occasionally someone would poke just their head round the door, making sure to keep the rest of their body behind the protective barrier.  My stomach didn’t even gurgle.  At lunchtime, bored and hungry, I wheeled myself down to the cafeteria.  Word had spread and I was given a whole table to myself.  I ingested my 20th meal without result and trundled back to my room. The afternoon ticked past and it got to 3pm, my physio appointment time.  Since I attended my physio sessions religiously as they were one of the few things that were keeping me sane, I waited until the coast was clear and shoved myself as rapidly as I could to the gym.  I was just about to clamber out my chair onto a plinth for my session when my pursuers caught up with me, bursting in with the information “She’s been Picolaxed!”  The reaction was instantaneous. Physios threw themselves protectively across their patients or behind the nearest piece of equipment and finally I understood the etymology of the word arsenal.  “Get her out of here!!” bellowed the Head Physio, presumably with horrific visions of exactly how many nooks and crannies there are on a leg press to have to clear the effects of Picolax out of.  My wheelchair was firmly manhandled at speed back to my room and deposited there with firm instructions NOT to leave it again.  

Evening came.  Nothing.  By now I was a cause celebre of the whole unit.  Fellow patients pointed at me through the glass wall of my room, laughing; visiting small children, held firmly by the hand, were brought to see the Picolax Lady and last but not least, a stream of medical professionals dropped by to see with their own eyes the patient that refused to poop even after Picolax.  Morosely, I ate my 21st meal and then had to work very hard to persuade some staff to help me get ready for bed.  

Day eight.  Morning.  FINALLY, to everyone’s immense relief, not least of which was mine, I pooped.  Unexcitingly, normally and as if the last seven days, eighteen sachets of Movacol and one of Picolax had never happened.  Colon 1, Picolax 0.

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We Can Still Hear, You Know

One of the main things about being in a real hospital as opposed to watching it on the telly is that you are there being ill/seriously injured/at your most vulnerable whilst being in extremely close proximity to lots of other people who are in the same boat.  For some reason this never happens to people in programmes; they always seem to have their own, spacious, private, quiet and well appointed room.  Here they are visited only by their loved ones and sympathetic medical staff, the latter of which do not look like they have just done a 12 hour night shift and can’t wait to go home.  Being an only child and having, since reaching adulthood, then foolishly elected to sleep with just one other person at a time, spending 24 hours a day but particularly the nights, with at least three other people, was quite difficult for me to get used to.  My acclimatisation was not aided by the lack of privacy.  I tried out three different wards during my time at the NHS’s pleasure, each one containing me and three other inmates.  The beds all had flimsy curtains that could be drawn around them but each bed was only a few feet apart from the others and thin curtains do not stop the dissemination of sound or, worse, smells. So, whilst it was true that people could not actually see what was going on in a bed, the visual lack could easily be made up for in vivid imagination fuelled by the other emanations for the senses.  

At first, new patients try to preserve some sense of dignity by speaking in lowered tones but after a few days they cease this futile struggle, recognising it for the lost cause it is when everyone else around them is discussing their most intimate bodily functions in ringing tones.  I learned this lesson early on when one of my ward mates was a paraplegic lady who had come into hospital due to chronic constipation.  Many years post injury due to a car crash, she was both an inspiration and a warning to a newly injured patient like myself.  The inspiration came from her independence and her cheerful disposition, the warning from her condition.  As I lay opposite in my bed I became an involuntary front row audience to her drama.  Several times a day a doctor or nurse would bustle in and enquire loudly as to whether she had had a bowel movement yet.  For the first few days the answer to that was ‘no’ so then there was an ongoing discussion about laxatives, diet and exercise.  Later, after she had been plied with various noxious substances and they started to take effect, she developed a violent flatulence which she was helpless to control and which was then also discussed loudly although, to be fair, in these conversations the medical staff could have been shouting just to be heard over the noise. After this stage she then had to clamber out of bed and visit our attached bathroom, into which she was accompanied every time by a minimum of three people who went with her to assess performance or lack thereof.

During my time in hospital my fellow inmates were both a source of support, company and reassurance and an infuriating annoyance, depending on what they were doing at the time.  My first memorable neighbour was one I christened The Fruit Lady.  I encountered her after my first few days in the high dependency ward – you know, the one into which I arrived, refused to sleep for three nights, had two midnight panic attacks, nearly suffocated and then took to banging a spoon against the bars of my bed in the early hours for the best part of a week.  I shudder to think what they called me.

Anyway, The Fruit Lady was so named because one evening she took to calling out for fruit in the middle of the night.  This was done loudly and unspecifically but very repeatedly for several hours.  ‘I just want some fruit’ she pleaded, ‘Please can I just have some fruit?’ and ‘Fetch my daughter, she’ll get me some fruit’. With the experience I later gained about the effect of an infection and high temperature on elderly people (a carer once told me that she realised one old lady was suffering from an infection when she arrived to find her sitting in bed clutching a feather duster.  When asked what the feather duster was for the lady replied, matter of factly, ‘To hit the crocodiles with.’) I can now guess that she was probably delirious but only a week or so conscious at the time I was torn between feeling immensely sorry for her and just wishing that someone would give her some damn fruit so we could all go to sleep.  After the second night of fruit calling The Fruit Lady was finally wheeled in her bed out into the corridor where her pleas could still be heard at a distance.  Around 5am the calling stopped.  Later that morning I asked the nurse on duty whether The FL had finally received her fruit.  “No,’ she replied ‘She died.’  It was a sobering reminder that one minute you can be calling for fruit and the next dead as a doornail.  The gap between one and the other is much thinner than we think and nowhere so much as in a hospital.

A small aside on the thinness of that veil – a brief chat with some nurses revealed that many of them had had weird experiences around dying patients or in wards where people had recently died. One told me of sitting late at night with one elderly patient at the end of her life who had been muttering unintelligibly but who suddenly focused on something or someone just behind the nurse and started to converse clearly with them/it.  ‘What was it?’ I asked.  “I don’t know’ replied the nurse.  ‘All the hair stood up on my neck and I was too scared to turn around.’

Meanwhile back in the HD ward The Fruit Lady was replaced by Clucking Man and the fun really started.  Clucking Man’s actual name was John and he had been involved in a terrible car crash.  The driver had suffered multiple injuries but of a type, although serious, he would recover from in time and walk out of the hospital to resume his life.  John, on the other hand, had broken his neck high enough up that he was completely paralysed from the chin down, being able to move nothing but his head – and his mouth.  To start with he had been unable to talk so some bright spark had taught him to loudly click his tongue against the roof of his mouth to get attention or help. Unfortunately for everyone, he decided to employ this loud clucking noise ALL the time.  All day, all night, all through the next day…and the next night.  To start with our nurses went to see what he needed but it appeared that he either didn’t want anything more than to make them walk over to his bed or he put in requests that I couldn’t hear but that elicited responses much along the lines of the Meatloaf song – ‘I’ll do anything for love but I won’t do that’. 

Clucking Man, as he became known, was also a mystery since he appeared to have no next of kin.  He refused to name anyone when asked and nobody had come to see him since his accident or contacted the police about his disappearance from life. The hospital staff put in a lot of effort to try and trace family or friends for him not only on the basis that he was a young man who must have somebody missing him but also because the bald truth was he was never going to be able to look after himself again with no movement and would require specialist care for the rest of his life. Repeatedly they drew complete blanks until, strangely, it turned out that the matron of the spinal ward was a distant cousin and she managed to get in contact with some people who claimed to know him.  A few days later two of these so-called friends turned up at his bedside.  Earwigging for all I was worth, I strained to hear their conversation.  After some perfunctory hellos and how are yous, the two men went straight into questioning him about some money that he had supposedly had in his pocket at the time of the crash.  It rapidly transpired that they were not interested at all in Clucking Man’s welfare but only in the £500 they wanted off him. John either had no idea where the money was or refused to say so the men left after 15 minutes leaving the hospital still with a gravely injured patient who appeared to have absolutely no-one who cared about him. 

That said, he was not a terribly likeable man.  He tried to get attention from the nurses all the time and they rapidly got tired of him loudly clucking away and calling them to his bedside for no reason.  After a several visits, when they ascertained nothing was wrong (apart from the catastrophically broken neck and paralysis, obvs), they took to ignoring him so John rapidly switched up his tactics and took to shouting ‘Help!  Heelllpp!!’ instead. This produced a few more bedside turns from the staff before they went back to trying to ignore him again so he then expanded it to ‘Help!  Help!  I’m dying!!’.  Technically one could argue that this was true – aren’t we all – but, hooked up to machines monitoring his vital signs 24/7 in a high dependency hospital ward, there was plenty of real time data to baldly contradict his claims.  ‘No, Clucking Man, you are not, unfortunately, about to die.  Observe your steady and regular heartbeat, your excellent oxygenation stats and all your bloods are looking good.’  

In fact, he was probably the heartiest in the ward as he took being ignored as a signal to simply redouble his efforts so we spent the rest of that day with ‘Help!  Help! I’m dyyyiiinnnggg!’ ringing loudly in our ears at five minute intervals.  He didn’t respond to any sort of request to be quiet so eventually a nurse strode over and administered something which knocked him out into a, thankfully, silent sleep.  

Clucking Man snoozed gently through that night and most of the next morning with all of his neighbours basking in the bliss of a quiet ward.  We had breakfast, we dozed, we took drugs and got stuck with more needles.  Some of us (ie me) had physios stick things down their throat and suck out loads of gunk and got pummelled and then attached to a nebuliser.  It was almost enjoyable.  Into this peaceful idyll came Somebody Important.  I’ve no idea who they actually were but they were wearing an expensive suit and showing four other Important People around the ward as one of the hospital’s equipment and capacity highlights. Expensive watches flashed and pearls clinked as they looked around curiously at the beds and machines and inmates.  They nodded sagely as Somebody Important talked through what the ward was for, what it could do, how it was able to cater to even the most severely injured and keep them safe and well.  Finally Somebody Important turned to our nurses.  ‘Everything ok in here?’ he asked.  Possessing an incredible sense of timing, it was precisely at this point that Clucking Man woke up.  ‘Help!  Help!  I’m dying!’ he yelled.  The Important People looked positively terrified and agog all at the same time, presumably expecting to witness some top Casualty style action as these crack nursing staff leapt to aid this patient. Our senior nurse sister smiled serenely.  ‘Oh, yes.’ she replied ‘Everything’s fine’ with neither her nor her colleague so much as looking in Clucking Man’s direction at the bottom of the ward.  He increased the volume – ‘HELP!!!!  I’M DYING!! I’M DYIINNGG!!!’.  Important heads swivelled confused between his bed and the nurses, who still didn’t move.  So Clucking Man went for broke.  ‘SUCK MY C***!!!!’ he bellowed.  The Important People were hastily bundled out of the ward.

After this piece de resistance, Clucking Man was dispatched to his own room several doors down where he could be shut away.  I promise you that weeks later I was wheeled past his door and could still hear, albeit faintly, ‘Help, help, I’m dying’ wafting on the breeze.

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A Fox Lake Blog

Can You Apply the Cream?

My tweets one day from my second hospital went as follows:

Lady with dementia just wrestled her way out of bed to phone her husband ‘to tell him where I am’. I explained that he’d only just left.

Lady with dementia just wrestled her way out of bed again to phone her husband ‘to tell him where I am’. I explained he’d only just left.

Lady with dementia just wrestled her way out of bed yet again to phone her husband ‘to tell him where I am’. I explained he’d only just left

Lady with dementia just wrestled her way out of bed to phone her husband ‘to tell him where I am’. I said ‘Good idea’.

I didn’t know she was trouble as soon as she walked into the room but I had a fair idea within five minutes when I heard her daughter say, in tones of dismay “Oh no, I’ve forgotten her anti-psychotic drugs” – always a comforting thing to know about the person who’s spending the night in the bed next to you when you are paralysed from the neck down.  

It was November, winter and its various ailments was upon us and the hospital was on what they call a ‘reap five’. REAP = Resourcing Escalation Action Plan and level five is ‘critical’. In other words the hospital was full up with all the beds in the entire place occupied and targets – whether in 999 ambulance response or in A&E – being missed left, right and centre.  Unfortunately, illness, infirmity, bad luck and downright carelessness don’t take much notice of such things so A&E was still receiving a huge influx of people, some of whom were not fit to be patched and dispatched but needed to be somewhere safe, supervised and medically ready to roll for at least one night.  There were of course absolute cases that no-one would argue with stashing in a hospital, such as those who have really done themselves a mischief or whose major organs have decided to give up the ghost but many of them fell into a ‘need definite supervision but are not ill with something that is going to kill them imminently or, perhaps more crucially, with a problem that the hospital was equipped to sort’.  The largest group of these were vulnerable elderly people.

Talking to the hospital staff, the big issue was that there was nowhere else to safely put them.  Many elderly people needing help are still living at home with carers coming in several times a day to check on them.  Sometimes those carers are privately funded and sometimes they are paid for by social services but, in either case, putting them in a home is astronomically more expensive, whoever is paying the bill and, with council cuts driving ever deeper, places are few.  Of course, many would rather eat their own arm than go into a home but relatives are not able to be there all the time due to their own commitments and carers are usually only there for a maximum of three calls a day and not overnight.  So, what do you do if your elderly relative falls late one afternoon and hurts/upsets themselves enough that they cannot be left overnight alone?  You call for an ambulance and they get taken to hospital where, once admitted and obviously vulnerable, they cannot be hoofed back out into the dark night to an empty house. Now, you have to find them a bed.

Down on the spinal ward, with our collection of uniquely vulnerable and work intensive inmates, we were supposed to be the last resort for hospital managers on the prowl.  Despite this I was warned by staff that, if I got taken out for the evening,  I should make sure that I was back by 10pm or face returning to find someone ensconced in ‘my’ bed for the night.  I laughed.  They didn’t. 

With my neighbour gone, the empty bed next to me became a revolving carousel of various  people, none of whom had a spinal injury but most of whom had mental illnesses that rendered them the worst people to attempt to share a night’s sleep with.  The lady whose daughter had forgotten to pack her anti-psychotics started off well enough with complete silence behind her flowery curtain until 2am.  At this point she commenced wailing “Nooooooo! NO! NO, no no no no noooo!” which she continued until 7.30am when the arrival of breakfast and the insertion of some Weetabix restored calm.  By this point, I was the one that needed the anti-psychotic drugs. 

Then there was the elderly lady who, in the middle of the night, decided she needed to go somewhere.  Her attempts to leave were foiled by the cunning manner in which her bed curtains overlapped.  Unable to find a clear gap through which to make her exit, each time she wrestled manfully with the material, muttering to herself until, sprung free, she took two steps and promptly entangled herself in my curtains, whereupon she repeated her escape manoeuvre and then was utterly bewildered to find herself back inside facing a bed, apparently exactly where she started.  It was lucky for me that she was a determined type as, at that point, had she given up and decided to go back to bed it would have been my bed, still containing me, that she would have been clambering into. 

Another was terribly upset that her husband didn’t know where she was and would be worried about her.  Every quarter of an hour or so she would suddenly start crying, genuinely distressed and wanting to find a phone to ring him.  There were two problems with this – first, she was in hospital because of a bad fall due to being very unsteady on her feet and not supposed to be moving about on her own and second, her husband had been with her all evening and had only been gone half an hour when the first episode started.  My attempts to reassure her on this latter point worked but only for the fifteen minutes it took for the cycle to repeat itself.  Eventually, I gave up and let her totter out to the corridor and the nurses’ station where I hoped someone who knew more than me would be able to reassure her. 

However, none of our female ward visitors even came close to Jack. 

Jack arrived just before Christmas, presented by his relatives at A&E with a rash in a delicate area. Of course, A&E is not the place to go just for a rash but Jack was also in the throes of severe dementia and the staff were pretty sure (and they’d seen it before) that the rash was just an excuse for dropping Jack off for the holidays so that they didn’t have to deal with him over Christmas. 

Physically (apart from the rash), he was in fine fettle.  A big, strong man despite his age, he was well over six foot but harboured a deep distrust of anyone in uniform and a burning desire to escape and go home.  This combo made him extremely tricky to deal with for the nursing staff, who were already under pressure with all of us lot. 

Jack was put into a male ward next door to ours and joined five other spinal patients in there. Three of them were relatively mobile paraplegics – guys with lower injuries and able to move themselves around pretty quickly.  One was a man who came in for a persistent UTI requiring intravenous antibiotics but was also carrying a pressure sore when he arrived. Under the circumstances the dressing didn’t get changed so the sore turned gangrenous and, faced with the prospect of losing his leg, he sunk into a deep depression and refused to move, speak or eat.  Finally there was Nigel.  Ill with a stomach bug he had fainted in the bathroom and fallen, breaking his neck high up and leaving him completely immobile from the chin down when he came in.  These five were now joined by the robust, extremely ambulatory, presumably itchy and very angry Jack who staged his own version of the Great Escape every night, usually by trying to smash one of the large floor to ceiling windows and climb out of it.  The first few times this happened the staff would run in and try to dissuade him but with his hatred of uniforms this only enraged him further and led to a Benny Hillesque chase around the ward and surrounding unit until the fun stopped one night when he turned on one of the Healthcare Assistants and punched her in the face.  As I’ve said, he was a very big bloke and there were usually no more than two ladies on duty (there should have been at least four). There was no way they could restrain him on their own and it was reaching the stage when someone was going to get badly hurt. At this point, heroically and chivalrously, the inmates of the ward stepped, as it were, into the breach and told the nurses to leave Jack to them and they would try and reason him down on their own when he started his breakouts.  This worked better although was not foolproof and was complicated by Jack’s decision that, of all of them, Nigel looked the most sympathetic.  Hence it was that Jack then took to presenting himself at the immobile Nigel’s bed in the middle of the night, pyjama trousers around his knees, tackle out and pot of ointment in hand, asking Nigel to apply the cream.  Obviously, the other guys had a few helpful suggestions as to how he might do that without hands but, after they had stopped laughing they gently steered Jack back to his bed and fetched a member of staff who, hiding her uniform temporarily with a coat and armed with the ubiquitous gloves, would soothe the savage rash.

As you can imagine, everyone breathed a sigh of relief when Jack was eventually discharged on the 28th December.  Happy New Year.