Easter Baking Extravaganza: Hot (Cross?) Buns

Being mostly bedbound and unable to eat DOES NOT have to mean you can't do something you love. For me, that's cooking and baking.

Mama and I had a busy fun filled afternoon Baking the first batch of Easter goodies: Traditional Hot Cross Buns, pepped up with cinnamon and citrus peel, as well as the ubiquitous sultanas. The day got off to a bit of a dodgy start. My scales were playing hide and seek, Mama forgot the second type of flour to make the essential crosses with, and the small measuring jug that used to be kept in the kitchen was turned into a bile bag measurer months ago.

Dry ingredients sifted & mixed

So, Mama made a mercy dash back to her home for the missing stuff as I pressed on, (weighing scales found), with measuring out the dry ingredients. I was so eager and focused on measuring out my two weighing tubs of flour, (my scales only go up to 450g and I needed 500g), that I had dumped the first lot of flour unsifted into our mixing bowl. It was only when I was halfway through measuring out the rest of the flour that I realised my mistake.

Big cook Little cook

Horrified at what Mama would say, the girl guide in me took over. I stopped my measuring,  took the tub off the scales so I didn't knock 100g of flour all over the bed, and got a nurse to help me spoon the mixing bowl of flour into an empty clean ice-cream tub. Cue some expert sifting, my mistake was rectified.

By the time Mama arrived back, all the dry ingredients, (flour, salt and sugar), we're ready in the mixing bowl and the yeast packet was in the process of being opened. Together we gradually mixed in the watered down milk until our dough was well formed but sticky. We turfed it out of it's pot and onto a chopping board on the bed. It was ready to knead.

Mixing decks

It's amazing what an impression something can make on you at a young age without you realising, even after only doing it once. When I was 12 I went on a school trip to France. On one of the outings, we went and made Pain Au Chocolat at a local Boulongorie. It was the only time I've kneaded bresd dough until today, but as soon as that dough was on the board and under my fists it all came back to me.

Rosie Kneads Dough

The hardest bit of the whole enterprise was getting the bloody sultanas, orange zest and mixed citrus peel into our dough. Oh my god! As soon as you pressed them in, the ones you'd put in earlier would pop out! It didn't help that I was trying to do this back in the mixing bowl as Mama cut the orange zest on the board. Occasionally I'd turf her off, Chuck the dough on the board and knead it a fresh. After a couple of repetitions, plenty of swearing and laughing later our dried fruit adversaries resolve started to wane. Exhausted, but with currents running evenly through we left the dough in its bowl to prove.

And boy did it prove. Double it's size, happy and majestic. I buttered the baking trays, and together we took handfuls of our springy dough mix rounding it into even sized balls until we had a good bakers dozen plus one good sized patties on our tray. Whilst waiting for them to prove again, we made our piping mix for the most scary and exciting bit yet: piping the all important crosses.

Crossing the Buns...

Ordinary flour, sugar and the rest of our milky water spooned into a crudely made piping bag, (plastic bag with the end chopped off). Both of us having never piped anything before, Mama had a go first to get the idea before handing over to me. Hmm... I'll say piping is not my forte yet but I managed 7 reasonable attempts all mostly cross shaped.

The next job was getting them home to Mama's house to bake. By this time my TPN nurse had arrived as well, (the clock had struck 8), just to add to the general melee. A washing basket commandeered for one baking tray, the other was placed in the box Mama had used to bring the equipment over with her. Both trays will be baked at home. Drive safely Mama, you are carrying precious cargo on board...

Tray 1 of Hot Cross Buns 

Tray 2 of Hot Cross Buns

The beast from the east

The beast from the east is truly upon us. Blizzards, gridlocked motorways, children off school, and the first 'Red' level weather warnings the UK has ever seen. It's safe to say that the weather is firmly at the front of everybody's minds. But for me, and other people with chronic life altering conditions, the beast from the east, (as this Siberian tundra has become affectionately known), is the icing on an already difficult existence.

"The Best from the East"
An original cartoon by Rosie P

Snow always highlights an internal struggle for me. The small child inside lights up with delight at the virgin snow outside my window, eager to jump up and get out there, whereas the adult old before her time worries and frets that her joints will be particularly stiff and that day. I want the snowball fights, the snowmen building. Walking in the crisp crunching white stuff to the park dragging my little orange sled behind me before hurling myself down a slope headfirst for an afternoon of endless fun. But that's in the past. Memories that melt away with the snow until the next time we are deluged.

Nowadays they're replaced with worries. "Will my nurse make it to do her shift?". "If she doesn't will the current one have to do a

double shift?" "Am I going to be able to get to my appointment tomorrow?" "What if I do go out to build a snowman and my wheelchair gets stuck, our I catch a cold that then won't shift". My most pressing worry is "What if the TPN nurse can't make it? What do I do about getting fluids and my intravenous meds?". Snow highlights to me just how dependant on others I truly am, and for someone who's worst nightmare is total dependency, that's a very scary feeling indeed.

Snow scape. The beauty of it never gets old

The worst part is the child like wonder and magic is still there, pulling my heart where it cannot go. I'm jealous of the kids out there shrieking with glee, there tiny footsteps peppering the soft white snow. They don't know how lucky they are. I feel barred from the fun, resentful that my vulnerability is being highlighted for all to see. Friends used to invite me out on snow days as a child. I didn't used to go, preferring throwing myself down the park hill with my Dad instead. I'd give anything to be able to do that now.

So as you cheer that school is cancelled, and another day of exploring your winter wonderland beckons, spare a thought for those of us hiding away from the snow restraining our inner child as they scream and kick with every fibre of their being to join in the fun. Think of the ones we rely on too. The nurses, police officers and fire crews who battle come what may to make sure we are safe. For they are hero's, literal life savers. And let's hope the beast from the east passes by soon. 

R wraps up warm indoors as the kids play in the snow

What it means to be "Rare"

Official banner for Rare Disease Awareness Day

28th February is Rare disease day. Social media is filled with the bright colours of the world wide "Rare" community celebrating and raising awareness for the myriad of different conditions. And why shouldn't we? No one else is going to raise awareness for us, and after all our battles, we deserve to be heard. To be understood. To be loved. There are more of us than you could ever imagine. More then 300 million worldwide to be precise. For a condition to be classed as rare it needs to have less than 200,000 sufferers in America and 1 in 2000 in Europe. Most are caused by faulty genes. We were born with them. They are us, and we are them.

I suffer from several, but the main two are a collogen disorder known as Ehlers Danlos Syndrome (EDS for short) and a Pancreatic disorder known as Hereditary Pancreatitis. Both have left me in agonising pain, tube fed and reliant on nurses and carers to help me with my daily needs. They impact each other too. Flares of one, often result in flares of the other. The almost constant tag teaming is exhausting and impacts every aspect of my life, all be it in differing ways. 

"Pancreas under attack"
 an original cartoon by Rosie P

Hereditary Chronic Relapsing Pancreatitis. Quite a mouthful, but very descriptive. I chose the wrong genes in conception, and as a direct result was labelled as being "failure to thrive" as a baby. Essentially, HCRP means my pancreas doesn't produce enough enzymes to break down my food, and the ones it does produce haven't been made correctly. As a result, when my food enters my digestive system, the enzymes my pancreas release start digesting the Pancreas instead. Its effects are chronic relapsing episodes of inflammation of the Pancreas, leading to pancreatic atrophy, pancreatic stones and many other nasties. During an attack I will vomit continuously for hours, blinding stabbing pain high in my abdomen going from the front to the back, radiating all over my belly. 

At aged 4 when I was first diagnosed I used to describe it as being "Here, here, here, and here" (all over the abdomen). I wasn't believed by the doctors and would cry in agony for hours despite the diamorphine syringe driver I was attached to in my hospital bed. A simple blood test from a curious young doctor saw my diagnosis rendered after a traumatic week long admission with these apparently non descript symptoms. They sat my mother down to tell her. It broke her heart. I was the youngest they had ever seen presenting with it. The disease only usually shows itself during teenage years. 

I still get attacks now, 21 years later. It's the worst pain imaginable. From a pain and relapse point of view the best I can hope for is the Pancreas "burns itself out" and becomes more scar tissue than working organ. Mines already nearly there. Only 10% working tissue. Brittle Diabetes and Pancreatic Cancer are complications I will likely need to endure in the future, but for now I wait. There is no cure, just symptom management. If I have children, I am 50% likely to give the faulty gene. Any child of mine with the condition has a 50% chance of having symptoms.

Some of the symptoms of EDS 

As for the Ehlers Danlos Syndrome, the effects of that on my body are wide spread. I have the Hypermobility Type (known as hEDS or type 3). It effects all my muscles, including the muscular organs of the bladder, bowel, heart and blood vessels, even the muscles that hold and focus my lenses in my eyes are effected. I have total bladder failure and am reliant on a catheter straight into my bladder to empty it, and wil be for the rest of my life. I am tube fed via my bloodstream as my bowel lacks the ability to move. It too is slowly falling. I suffer painful dislocations of my joints too as the lax muscles surrounding them struggle to keep my joints in place. This makes simple tasks such as opening jars, walking, writing increasingly harder. 

Like the Hereditary Pancreatitis it is a degenerative condition and there is no cure. I was diagnosed aged 21 after years of mistreatment by various doctors and medical teams. Again it took someone looking outside the box to make the formal diagnosis. Unfortunately I am not alone. On average it takes sufferers of rare diseases years of being turned away and mistreated to get their diagnosis, and many more besides to get the treatment they need. So next time you see someone hobbling about on crutches, or walking with apparent ease out of a disabled space spare them a thought. They might be battling a rare condition. There are more of us than you think.

Rare Disease Fact card by Novartis

For further information on Rare Disease Awareness Day please follow the link below.

https://www.rarediseaseday.org

Time is a peculiar mistress

I wrote this earlier last week, and had been waiting until I had the energy to draw an accompanying cartoon to publish it. But here we are, a whole week later drowning in assignment tweaking and writing, with still so little energy that no cartoon has been completed. 

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Another night shift. It's been 3 weeks since I last got more than 5 hours sleep, and it'll be another 3 weeks until the end of this permanent dehydrated and sleep deprived fog. A new life line is to be inserted. But for now, I fight to maintain my grip on my existence. I've got into a rhythm now. Tablet on. BBC iPlayer or Google Play are my new best friends. Heat pads warmed, nurse sat on my sofa pressing the buttons when my fingers start to ache. The constant alarming drives through me like a knife. Piercing. Insistent. Soul destroying.

Time has become warped. Reduced down to infusion volumes and the witching hour. Two magic numbers. I look forward with every fibre of my being to seeing the volume fed turn over to 400ml. Or the clock ticking ever onwards, until the hour hand reaches 3am, which ever happens first. Then blissful beautiful blackness and sleep.

As the days draw on, the more I notice the changes. My hips protrude like too mountain summits, separated by a desert plain. Ribs and the buttons of my spine now resemble some kind of weird skeletal xylophone, my legs fragile as matchsticks in an open fire. I hurt. Bones are sharp and even sitting on layers and layers of padded cushions doesn't alleviate the pain for long.

I hate this. I feel like I'm disappearing, and not just from a weight point of view. I feel like I'm sleepwalking through things at the moment. I'm permanently exhausted. Lips cracked from dehydration. A permanent headache from loopy electrolytes, dodgy sugars. I feel like I'm lurching from one crisis to the next. Everything is falling apart.

He lied to me one time too many. As my doctor he should at least be talking to me directly about decisions about my care, NOT passing messages through his minions, ignoring me, and then lying to my face when I confront him about it. His tentacles have reached into my home life, it's disintegrating too. Problems are being brought to light that I had no idea existed, and to be honest STILL don't know if they exist or are a manufactured way of making me feel bad. I feel lost. Confused. Angry. Scared. The situation feels unreal. Like I'm loosing my grip on my reality.

The last few weeks have been full of so much stress and angst. Severe weight loss, sleep deprivation. Add into that unexpected withdrawal symptoms and spasm inducing pain, from the GP slashing my dose of pain relief. When will it all end? Every time I think I've hit rock bottom, the ground swallows me up and spits me out once more. 

As I said, time is a peculiar mistress. It's funny what a difference a few weeks can make.

Under Pressure (Day 10 of no TPN)

I promised myself what I first started writing this blog that I would do at least one of two things:

1. Always be honest about how a situation makes me feel, no matter how unreasonable my reaction might feel.
2. To record this for myself first and others later. 

******

This post is about my mood, which at the moment can only be described as absolutely foul. Everyone and everything is unbearably frustrating and in my eyes nobody can do any right. The stimulus for this sudden and thunderous change puzzles me even more, and is completely out of line with the proportion and strength of my emotional reaction. My carer asked me what I wanted to wear tomorrow for my morning at uni and would I like a wash now as well to be woken up early for one tomorrow.. 

Immediately I felt a hot surge of anger. "And be up before even 3 hours of sleep?! I howl mentally "No I don't want a fucking wash!" The voice in my head screams, internal me leaping off the bed to shake my gorgeous carer warmly by the throat. "Fine" my mouth says coolly. Smiling, the carer bustled into the bathroom. "Rosie, do you want your shaving things". A muscle I my clenched jaw twitches. No I don't. I don't even want a wash. I feel forced. Entirely of my own making, but still real nevertheless. 

I can hear the TPN nurse busy preparing her trolley to connect me up to my torturous ever beeping pump. My heart sinks and my frustration and anger grow, like gasoline poured on flames. I  don't want my stupid pain in the arse TPN. I don't want all these people in my house constantly asking the same stupid questions over and over again. I want to scream. I just want everyone to bugger off and leave me alone. I want to get a full night sleep uninterrupted. Is that too much to ask?? Evidently so. 

As I said, completely unreasonable. I'm suddenly aware of the light bulb burning bright above my head. It's too bright. Making my eyes hurt. I resent it and want to rip it out of the ceiling and smash it into a million pieces. Woah! Talk about over kill. 

"Stop the world, I wanna get off!"
An original cartoon by Rosie P

My eyes sting and start to blur. My throat feels too tight, nose runny. My body prepares itself to cry, the normal measured response to being extremely overtired and emotional. But destructive angry me says don't you bloody dare, putting energy it doesn't have into suppression. It sees it as a sign of weakness. I know there is only blocking the dam for so long. I know letting it burst in front of someone will only attract sympathy. I can't stand all the questions, the attention. The perfect reaction for me is just for it all to be ignored, if I want to talk I will. 

The carer approaches, the commode rumbling down the hallway into the living room, water gently sloshing over the sides of the sides of the wash bowl. I hurriedly sniff and wipe my eyes. Now the rage is starting to ebb, I feel like the stuffing has been knocked out of me. I don't care what I look like at the moment. Not in the mood for anything except the sweet oblivion of sleep. Stop the world, I want to get off. 

Simple things such as washing and getting dressed when connected up to my failing life line 24 hours a day are mammoth proportioned in terms of effort. I am pinned to the bed thanks to the drip stand. I do have a rucksack, but by the time I've faffed about with that, my slim opportunity to grab clothes, wash and change my upper and lower halves would have been lost. 

I'm currently averaging 3-4 hours sleep a night, thanks to the almost constant mysterious alarming of the pump. In the morning I only wake up when the nurses are in the process of doing the morning medication and waft those heinous chlorohexadin wipes under my nose. Washing before being connected at night is not much better. By the evening, I often simply don't have the energy to wrestle the fluids through my top, change, shave, wash, moisturise etc. And also by that time I just don't care, all I want to do is to sleep. 

It's a race against the TPN nurse next door as she prepares the syringes of intravenous medication. Stressful and worrying. I can hear her opening and closing draws, as I half heartedly throw my flannel into the basin of warm water. I speed through my routine when my carer arrives back with clothes for tomorrow. The exhaustion induced rage rises again, as does the mantra "I don't care". Only, the more I say it, brown hair bouncing in angry defiance, the less I'm sure I mean it. 

The wheels of the TPN trolley rattle down the hallway, I hurriedly pull on my trousers. My carer still stands, arms full of clothes I don't want to know about. It's into this scene, arms half in to my top, hair sticking out like a bush through an arm hole, that the unfortunate TPN nurse emerges with the speed of a souped up Ferrari. "Ready to be connected?" she exclaims happily. I've been told my hard stares can melt mercury, even through a mess of hair and clothing... as if pulled by an overwhelmingly strong force, the TPN nurse backed out slowly without a word. 

Is it a bird? Is it a plane? No, it's Flamazine!

"Is it a bird? Is it a plane? No, it's Flamazine!" An original cartoon by Rosie P

Well, my course of the mysterious cream is at an end. Although the PEGJ* infection is definitely still there, it is by no means as swollen or painful as it was. And as a bonus for ten it didn't dissolve my surrounding skin, or finger tips when applied AND even helped the burnt skin surrounding it heal- Yay! 

As ridiculous as it sounds, the cream dissolving my skin was a real fear of mine. It's main component, Silver Sulphadiazine, is great at dissolving extraneous tissue and has antibiotic type properties. As a result all the literature says to use gloves and a spatula to apply it. Of course it didn't come with either of these, so I had to improvise. Thanks to my care company's constant over stocking of supplies, I have more than one spare set of gloves. As for the spatula replacement, that was easy- cotton buds! Which is also a lot kinder on the sore tissue than a sharp edged plastic spatula. 

Of course, in true hospital style, the cream just turned up in my bedside locker one day, with no explanation, let alone any instructions as to how to use it. Hell, it took me the best part of two weeks to work out what it was and where I was meant to be putting it, and that was all by complete accident. Once again, thank god for instruction books and not being a half wit. 

One of my dear friends told me it had been used extensively before the discovery of antibiotics to help treat burns, partial finger amputations, severe ulcers and skin grafts. It was the go to cream by all accounts. But nowhere did it explain what to do with PEGJ stomas. Queue plenty of beard stroking and discussion. I had detailed instructions of what to do if it was a burn or an ulcer, and due to stomach acid leakage there was one present, so... that will do. 

It may not be completely infection free yet, but this is the most comfortable my PEGJ stoma site has felt since it was placed 3 months ago by far. One more course of antibiotics, which my GP prescribed yesterday and I can hopefully wave goodbye to this Staph bug once and for all! 

Zebras vs Horses: What is a Zebra?

I have been asked a lot recently what Zebras have to do with Ehlers Danlos Syndrome. A Zebra in the medical world is someone with a rare and highly complex condition, such as EDS:

 “When you hear the sound of hooves, think horses, not zebras.” (Ehlers-Danlos Support UK, Why the Zebra)

The expression above is hammered into medical students throughout their doctoral training. The analogy serves to remind them that the simplest explanation and diagnosis for an illness,

"We are a Rainbow of Possibilities" by Rosie P

(the horse) is often the right one. As a result, when diagnosing a patient, doctors learn to expect relatively common ailments. Rare gets forgotten. This tends to lead to years of misdiagnosis, sheer ignorance and sometimes the sufferer being forgotten altogether and pushed from pillar to post with little in the way of answers.

Diagnosis usually comes years later, from some bright spark who considers rare and embraces it.

One of the things that makes EDS hard to diagnose is no two sufferers present in exactly the same way. Just as no two zebras bare exactly the same pattern of stripes on their coats. Some have different types of EDS. Others with the same type may have only joints affected, whereas others joints are fine but their internal organs are not. There are an infinite number of combinations, each unique to the person they belong to.

“Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers Danlos Sufferers are known as Zebras. Unique, rare and proud. 

"Why the Zebra?" Explanation poster from dailykos.com

Sources: Ehlers-Danlos Support UK (2017), Why the Zebra- Ehlers-Danlos Support UK, [online] Available at https://www.ehlers-danlos.org/about-us/charity-aims-and-focus/why-the-zebra/ (Accessed 7 February 2018)

The Ehlers Danlos Society (2017), Why the Zebra- Ehlers Danlos Society, [online] Available at https://www.ehlers-danlos.com/why-the-zebra/ (Accessed 7 February 2018)

Dehydrated Musings of a Zebra

**BEEP BEEP BEEP BEEP** I sink under the covers. The shrill yelling of my TPN pump pulls me reluctantly out of my light doze. My eyes snap open. Immediately alert. I roll over, muttering darkly. **BEEP BEEP BEEP** Erghh! "I hear you" I soothe. The pumps green backlight on its display screen flashes angrily at me. The alarm still squawking.

Ambix Pump with tonight's bag of TPN 

I already know what's wrong with it, down stream occlusion. It has been the same for the last 5 nights on the trot. Not more than 600ml of my precious nutrition has managed to be infused per night. If I'm extremely lucky I will get 30 minutes between beeps. But more often than not it's been every 10 minutes.

The lack of food and hydration is starting to have a noticeable affect. I have an almost permanent headache, am increasingly grumpy and distressed, and am lacking in energy. As for my mouth feeling like something has thrown up in it, than curled up and died, things are not quite as grand as they could be.

My brain tortures me when I do manage to drift off. I dream about nice cold thick milkshakes. Strawberry with a large blob of vanilla ice cream in it. My favorite. The ice cream floating like a beautiful creamy iceberg. Then I wake up, drooling. Pancreas throbbing from starting to work to produce enzymes to break down this mysterious mirage.

** BEEP BEEP BEEP** instinctively I stop and re start the pump. But it's only as good as shoving a dummy into the mouth of a screaming toddler. It spends a few moments sucking, slightly dumbfounded that you had dared to stop it mid tirade, before spitting the dummy out and screaming hell for leather once more.

We have tried everything and still it alarms. Sitting up? No. Lying down? No. On my side? No. X-Rays, and a procedure to check the position of the line. All came back clear. We have tried two different pumps, changing the pressure gauge setting on my current pump, putting it to the maximum it will put up with before alarming. And although it had made some difference, it hasn't been enough to get a viscous bag of fat content TPN (known as lipid) to go through successfully. I can't help but wonder what the team will come up with in the morning during their special consultants meeting. Whatever it is, I hope it helps.

I'm at the end of my tether. My get up and go got up and went days ago. But still I battle on. This will not break me. I have been through worse, and came through the other side more determined and stronger. I might be down at the moment, but I'm definitely not out.

An Exam Officer Calls...

Doing any type of exam is scary and stressful. Add in a malfunctioning body with several complex and chronic illnesses, each with their own set of difficulties, and suddenly those stress levels find themselves in danger of shooting off into orbit.

The email from the University sits in your inbox gathering dust with the other emails that are too scary to act on, but too important to ignore. What if they refuse my request? What if they won't allow me the help I need? Hell, what help DO I need?! I mean you can't exactly phone up and say, "hi I wonder if you can help me. I have extra requirements for the exam... what help do I need?... good question..." you'll be a laughing stock! No much better to wait until you've worked it out, then you can go in and ask them straight. That's what they expect.

"Charlotte Rides in on her Red Charger"
An original cartoon by Rosie P

But life happens whilst you're making other plans and before you know it, it's a month before the deadline and you've thought no more about it than when the letter first came through the door. Its almost too late. And it's into this internal chaos that Charlotte from the University's Student Support Team rides one day completely out of the blue, her stead rearing dramatically. Her voice over the phone is quiet and gentle, yet firm. You know from that first exchange of hellos that you're in safe hands.

"Do you have any ideas as to how we can support you for your exam?"she asks innocently. Immediately that panic rises up from no where, and your brain goes into panic screaming mode.
Eyes wide with fear, you manage to squeak out a "No. None".
"That's fine" she replies brightly, "I didn't either when I was doing my finals". A tidal wave of relief halts screaming brain in her tracks, like a slap to the face.

Charlotte suggests you look at the statement of disability paperwork you filled out when you first joined up. It's years out of date, but that alone is a good start. It's now Ehlers Danlos Syndrome rather than plain hypermobility. Catheters and Hickman lines. She knows a bit about EDS does Charlotte. She's arranged many a special requirement package for students with the condition in the past. She knows just where to start

A Computer written exam, possibly with voice activated software. Maybe an amanuensis if I would prefer? From talking further about my needs, especially the difficulties around medications and the need to rest my hands, rest breaks, she decides, must also go on the list. As must extra time for the brain fog and also typing speed, if I do the computer exam by hand, that is. She will speak to her boss to find out details such as what a home exam would entail and whether I would be able to practice with the selected amanuensis, (if I did go down that route), before the exam itself.

Just leave it to her she says. In the meantime, I need to have a think about the options we have discussed, and start writing a letter to be signed by one of my consultants that explains to the exam board my conditions, how they effect my ability to carry out an exam and how these will be life long. She signs off with those all important words, "Don't worry. It's all under control"...

Perfect.

Lady Sleep

Life with a Chronic illness involves a lot of waiting. Be it for new tests, or medication, or in doctors waiting rooms. Today has been spent waiting for energy that never came.

I'd promised myself that I'd get up early to start my new out of hospital routine, but when the alarm went off at 1030 as planned, I couldn't quite bring myself to wake up, so turned over to drift back into the comforting arms of sleep.

By the time I next came to, the clock had struck 1300. I leapt out of bed like a cat on a hot tin roof. Well, I say leapt. Truth is, I can't "leap" anywhere. It was more a crawl with the enthusiasm and speed of a sedated snail. My limbs felt heavy, uncooperative. Like they belonged to someone else.

I felt incredibly guilty that I'd given in and slept when I should have been awake and starting my day. My Brain was not my friend. It was muddled and foggy. Truth be told, I was wishing the hands on the clock to hurry round, counting the hours till I could wrap myself up in my favourite purple blanket and snuggle up with my hot water bottle and sleep.

"Brain Goes Sky Diving" an original cartoon by Rosie P 

But when that time does come, sleep does not. Instead my Brain is busy telling me all the things that it wants to do. Sky diving. Kayaking in Scandinavia. Exploring the Pyramid's in Giza.

Then it hits me. I cannot do those things anymore, so I mourn.

Before I know it, it's 0330 in the morning and I've not had a drop of sleep. I worry that I won't be able to get up again. The cycle will begin a new. Striving to achieve routine, yet always failing. The clock ticks. "One second less sleep". My Brain comments. The more I count the seconds, the further away from me sleep gets. My breathing quickens, panic setting in.

Just breathe I tell myself. Slowly. Focus on the cool air rushing in through your nostrils, flared and tense. Then the air leaving through your open mouth, lips pursed, the freshly warmed air tickling them. Feel your chest expand and contract.

Focus on the miracle of breathing.

Calmer, sleep starts to creep forward. She's like a shadow out of the corner of your eye. As soon as you look at her she vanishes. Gradually, with my attention focused on breathing she approaches, gently wrapping me in her warm embrace.

"Tomorrow is a new day" she whispers gently "what will be will be".

Home is where the heart is...

It's harder than you think, the transition back to "normality". Well, I say normal, the whole dropping everything out of the blue at less than a moment's notice to be transferred to hospital to stay for weeks at a time IS my normal. That transition always goes without a hitch. The first night is hard with the sudden increase in noise and light, having to always ask and wait hours for pain relief, but within a day or so it's as if I've never left.

"Sleeping" an original cartoon by Rosie P

Like slipping on an old pair of gloves. Warm and familiar. Coming back to the flat takes a lot longer. It all has an effect. The weeks of sleeping with one eye open all the time. The constant uncertainty over medication. I sleep like the living dead for the first day. Not even a nuclear explosion could wake me up.

But that uncertainty doesn't leave. It just hides. Like the monster under the bed. Lurking until you think you've settled back in to a routine, then it hits you like a tonne of bricks...

.. Usually in the middle of the night. It feels wrong lying in my own bed I the dark listening to the silence. This is my house. I'm in my own space, meds are on time, I have control of my own movement, my own light. I get my TPN reliably. I don't have to fight for the basics. So why do I feel so lost and disoriented? I should be this way when in hospital. But it's not. There I have a routine. I wake at 6, have meds and start my day as the ward comes to. 10 is when the doctors arrive. Then self enforced rest at lunch time to avoid the smells and the sounds of food. Visitors arrive at 4pm. They stay till 7. After handover at 8, it's films whilst I wait for my night time meds.

"Heart Returns Home" an original cartoon by Rosie P

Home is the unknown. The unexplored frontier. I don't know where I am. The freedom is too vast. The choice of what to do too broad. Home feels like the dream. I'm not usually here long enough to form a proper routine. These things take time. And most of mine is spent away from my castle, in a distant land. From there the grass surrounding my home and castle looks greener, more luscious. But then again, things in dreams always seem brighter and shinier than they really ever were.

Home is scary because it should feel right and it doesn't. Home takes time to adjust to. Like a tiger used to its cage, suddenly released back into the wild. There's a million and one things to do and worry about. Is nursing and care cover sorted for the week? Do we have enough medications to see us through till the next trip to the pharmacy? When is the next batch of uni work due?

Oh god uni work. I'm behind. I tried to keep up in hospital, but resistance is futile so they say. No. I must keep fighting. Home wil become home again sure enough, and a new routine will form. Change is scary. And change happens AT home in my castle. Hospital is always the same. Predictably unpredictable.

The Flat of Rosie IS where my heart belongs, even if it does take it a while to get there.

Better late..?

I glanced at the clock, half an hour had passed. Time to poke the sleeping tiger again. If I was lucky, I might be able to catch my night nurse before she handed the keys over to the day staff at hand over. Spotting my nurse, I called out to her. She stood out in her agency scrubs like a sore thumb. Glancing up, we locked eyes, before she promptly buried her head in the folder, as one might do if they are trying to hide in plain sight.

"I can see you you know" I called coolly. Still she ignored me. Muttering darkly, tummy throbbing, I fumbled under my pillow for the ever elusive call button, trying hard to avoid touching any of the patches of silicone plastic that are scattered about its smooth surface. As the Orange call light flashed above my head at the entrance to the bay, and unable to ignore me any longer, begrudgingly she started to approach. 

"Yes?!" She snapped, lips curled in a snarl. Slightly taken aback at her tone, but aware time was marching ever forwards, I replied b politely, "sorry to disturb you, but I asked for some pain relief over half an hour ago?" The muscles in her clenched jaw twitched so much, I thought they would jump right out off her face!

She rolled her eyes skyward, reluctantly slouching off in the direction of the controlled drug room. Erghh! I know her type like the back of my hand. She had been nothing but rude, dangerously lazy and insolent all night, right from the moment she had first arrived on shift. Consistently late with medications, and refusing without a bitter debate to use proper sterile technique when handling my Hickman line. 

As far she was concerned, my life line required no more special treatment than a standard peripheral cannula... I mean that is what it is isn't it, a rather large cannula?! No. It's not. One can last years and will give you a life threatening infection in minutes, (such as sepsis) if mistreated, the other does not. 

"Handover" an original cartoon by Rosie P

I was jolted out of my thoughts by the tell tale rumblings of the computer trolley. Since their introduction last year, they have been at best cluttering up the ward, and at worst preventing patients from getting their medications, by amongst other things, deleting drug charts and running out of battery. At last I thought, some pain relief. Half an hour late, but better late than never. But when the trolley approached my heart sank. Three nurses stood crowded round it, so close they seemed to move as one. 

Handover. And they were 15 minutes early. I howled, mouth open in a silent scream of frustration. Now at best it would be at least another half an hour at the earliest until I would get some relief. The plethora of nurses stopped at the end of my bed, hand over began in earnest.  

"This is Bed 32..." said the nurse, waving her hand vaguely in my direction. I huffed indignantly, "I HAVE A NAME", I screamed internally. "She requested oxynorm, but I'd already given the keys to another nurse. It's fine though she's not in that much pain". In couldn't stand it any longer. 

"And how do you know that? Are you in my body? Can you feel the saw like pain in my joints? And stabbing spasmodic pain throughout my abdomen? Just because I am not screaming the place down like some people, (I glanced towards my neighbour), does NOT mean that I'm finding my pain difficult to bear!!" The accompanying hard stare I gave turned her a spectacular shade of crimson. Paddington would have been proud. 

32 hours and counting: A Transport Story

"What?!" My jaw dropped. I couldn't believe my ears. This can't be happening. Not for the second day in a row. I looked at Dad, my mouth opening and closing like a fish out of water. For once, my insatiable voice had been silenced. Everything that could be said had already passed my lips. So I just sat there. In dumbfounded silence blinking back bitter, angry tears.

"Dreamer" an original cartoon by Rosie P

"I'm sorry, but we've tried contacting the bed manager, and transport won't be here before 9 tonight at the earliest. Would that be too late? It's really difficult to book for a stretcher ambulance on a weekend. Plus you have far to travel..." it was only when her voice trailed off that I became aware my eyes were throwing daggers. I snorted in disbelief, shaking my head, resisting the urge to grab her warmly by the throat.

Panic started to rise I my chest. I can't do another night. Not here, with meds so infrequently, with the constant screaming and moaning from the old lady next door. My eyes widened as another realisation hit me, like a punch in the gut. Oh god. What about my TPN?? Yesterday I got lucky as they'd over ordered my prescription, leaving me with a spare bag. The fight for fluids could take hours! My head sunk into my hands, the light stabbing my eyes like a thousand white hot needles. A migraine was brewing. The calm before the stress induced storm to come.

Sound went distant. Colour started to drain. I could hear Dad. He was talking to a gaggle of nurses: "So 10am tomorrow, for definite?" The resounding silence said it all. The cracks were beginning to show in earnest. "Your bed manager said that he'd arrange and pay for a private crew for tonight." Dad hissed, "We had even given him the name of our regular private ambulance company, only to be told that G4S have made there own arrangements. That was nearly two hours ago. So, once again, where the hell are they?!" He growled.

"Fire Breather" an original cartoon by Rosie P

"Stretcher cases are more complicated than you understand, sir." exclaimed the nurse. Dad's laugh was more like a howl. If humans could spit fire, she would have been roasted alive in a nano second. Big mistake nurse, big mistake.
"I have travelled in more stretcher ambulances than you have had hot dinners, NEVER ever has it taken this long" he seethed. "That award you have on your notice board, for your ability to organise patient discharges is clearly not worth the paper it's written on!", and with that we set about dismantling my care for the second night in a row, leaving the nurse and gawping Carer to chew wasps alone.

I felt utterly drained, as if I'd run a marathon up Everest. With Dad busy on the phone, and another nurse placing my meds back in my bedside locker, I glanced at the clock. Time was not on my side. 8 o'clock. The night shift had started to arrive for handover. Amongst them was my favourite nurse. Dropping her bag in the corridor, she made a beeline for me, embracing me in a bear hug without a word. Grateful and emotional, I squeezed back. "I'm so sorry" she soothed.

"So am I", I whimpered, tears finally running. "So am I".

Get 'em out by Friday? Lol!

The more I glance at the clock, the slower the hands seem to move. All the willing in the world, only seems to prolong the agony of waiting. The ward is quiet for a Saturday. That's part of the problem, nobody sensible to have their cage rattled. I check the clock again. The minute hand hasn't even budged an inch. I let out a long drawn out sigh, the sound reverberating around the silent ward.

*Tick, tick, tick*. The bedside tv chatters away to itself through my headphones. I watch on with vague disinterest as an ice trucker tries to free his load from the thick snow.  My eyes loose focus, I force myself to focus, attempting to remember some small innane detail, but it's no use. My gaze slips down to the digital clock instead, and begin counting down the seconds till the number flips over. 1458... 1459... 1500.

Pumpkin time: 3 o'clock in the afternoon. Officially 24 hours spent waiting for transport to take me home. I glance at Dad, catching his eye, I break out into a manic grin and laugh. At least I think it was a laugh. It was loud and made my sides shake, and my belly ache. My face hurt from the effort of the smile. Dad rubbed his chin, his jaw tense, the muscle twitching. Without a word he hauled himself to his feet. He looked tired. Grabbing his phone from the bedside table amongst the plastic bags full of medications, he left.

Bored stiff... Literally!

The laughter came to a shuddering holt. Footsteps, followed by a heavy rumbling. I sat up, ears pricked towards the sound like a jackal preparing to run for its life. The sound came closer. My heart began to beat, and the sweat started to build on my brow. Maybe... just maybe the wait was over. Trust Dad to go now! The rumbling grew, deep like the booming voice of thunder. My shoulders slumped as a Peter bearing a metal cage laden with goods approached. My eyes shot heavenward in silent despair.

As the cage rolled by out of sight, my tongue shot out in futile rebellion. Bitterly disappointed, I lay back down, muttering darkly under my breath. Familiar footsteps. I didn't bother glancing up as Dad approached, I was too busy sulking. We sat in silence, listening to the hushed chat of the other patients and their visitors, ears straining unconsciously for any sign of the missing ambulance and their crew.

1615. Medication time. My nurse shuffled in, head down, hoping against hope to get in, deliver the meds and leave again without attracting attention. With a deep sigh, she placed a hand on the curtain. The game was over before it had truly begun.
"Are, they you are." Said Dad, rising to his feet. "Did you manage to speak to transport again?" The nurses eyes widened, like a deer caught before a hunter.

"Ah. Er yes." She replied trying hard to hide the tremble in her voice. "They say they will definitely be here by 1730" I chocked on thin air. Dad was turning a worrying shade of red, the veins standing out on his temple. Drawing himself to his full height, he coolly replied, "another hour and a half?! Are you kidding? Have you not noticed a pattern? Every time we call it's the same. We'll be another hour a half. At this rate we won't be going home tonight either." He paused drawing breath. The nurse opened her mouth to respond, before thinking better of it.

"I have spent hours sat in this chair. I love my daughter, but this is intolerable." The dam keeping in my emotions burst and cascaded out of my mouth in a torrent of anger.
"We have better things to do then sit here and be lied to, fobbed off and blanked." I hissed. "You keep telling us they're coming, but where are they? I was meant to be seeing my best friend today, who I haven't seen in nearly 4 years. And instead, I'm waiting on you lot to get your bloody act together! I'm sick of you telling me that you can't do anything. That nobody in this hospital can do anything. I don't believe you!" Dad nodded fervently, continuing the barrage.

"Before you think you don't have an interest in this, you might like to consider the fact that we are trying to think of positive things to say about the wards conduct in our official complaint to the chief executive. However, that can very easily change" the colour drained out of the nurses face. "Now: whose in charge?!"

Too little, too late

I'm floating on an ocean of comfortable nothingness. Its silent except for the gentle lappng of the water. Calm. Peaceful. I can hear a voice in the distance. So far away it's almost inaudible above the waves. I strain, trying to work out where it's coming from.

"Rosie", I awake with a start. I'm on the ward in T9, the nurse is leaning over me, her hands resting gently on my arm. I try to rub the sleep out of my eyes, temporarily confused as to my whereabouts. "Walk up sleepy head, transports here".

A wave of anger hits me like a train, knocking the sleep out of me once and for all. "What, now? Buts it's too late! I've cancelled my nurses and Dad's gone home. What time is it anyway?"
She glanced at the clock. "Nearly 11pm" at this, a disgruntled man stuck his head round the curtain. "It's she ready or not?" He moaned, starting daggers. "We don't have time to be hanging about".

A tidal wave surged inside me, flooding me with hot adrenaline. I tried to swallow it back down, but there was no room. My volcano of frustration would not be contained. "We don't have time to be hanging about?!" I repeated, turning phasers to death con one. "Who the hell do you think you are?!" The man opened his month to reply, but my razor sharp gaze stopped him dead in his tracks. The colour drained out of his face, turning him a rather peculiar shade of grey. 

"I have been waiting for you to turn up since 3 o'clock this afternoon, and have spent my day being continuously lied to and fobbed off by your useless bloody company. As a result, I have been unable to return home and wil have to spend another night incarcerated with no sleep". The man gulped, shrinking back against the curtain, desperate to find some kind of relief from the intolerable heat of the death stare.

"So what do you want us to do?" Croaked the ambulance driver, eyes resolutely fixed on the floor, a shadow of his former bolshy self. I contorted my face into a smile and replied in little more than a whisper, "I want you to go back to your controllers and recant my immense displeasure. They shall be hearing from me with a formal complaint in due course".

His frantic nodding reminded me of one of those nodding dogs. The nurse and I watched in cold stony silence as he desperately tried to find his way out of the small gap in my curtains. Then like an animal being returned to the wild, he disappeared out of sight as fast as his short legs would carry him.

Going, going... gone?

"That's not good. I can't feel the cuff." Said the specialist nurse. Her brow furrowed with concern and concentration, as her fingers moved deftly up my chest and neck probing the skin for the tell tale lump. "When did you notice the line looked different?" She asked suddenly. 

"This morning when I was getting changed, I noticed that the junction where the lumens part was outside the dressing. It wasn't in that position yesterday."

Starting to slip. Not that I knew it then...

The nurses frown grew.  She pulled off her gloves, the soft slapping sound broke the increasingly tense silence. I knew what she was thinking, it had crossed my mind the moment I first saw my line. I was the first to break the silence, "it's falling out isn't it." The words stuck in my throat. Hot tears began to form, making my eyes sting. The nurse glanced at her college, who had been hovering so close to the curtains I'd forgotten she was even there. The look they exchanged told me all I needed to know.

She nodded. "It certainly looks that way, but we won't know for sure until I've reviewed your post opp measurements and have given the line a full visual examination. I'll get the sterile measuring kit" My heart sank. Just my luck. Two days post op and the damn thing is already slipping out. I wish I'd just put up with the allergic reaction from the stat lock* after all. Anything is better than this, even red hot rashes and blisters the size of ping pong balls! And with that thought, my heart sank further. The stat lock. Oh god! Is that why it's falling out?! No, can't be. I shook my head. No. Much more likely it was this morning's nurse tugging it whilst giving meds. Thank god I held on to it!

Triumphant. Line redressed.

Lost deep in my musings, I hadn't noticed the two nurses leave until the rattle of a metal trolley barging through my closed curtains announced their return, dragging me back to earth. I landed with a bump. The metal trolley was laden. A full sterile dressing pack lay open, gloves, syringes, alcohol wipes and several measuring tapes spilling over its surface. Hands sterilised, I began to peal of the dressing covering my new life line with the same care you would afford a live grenade.

Gently taking the weight of the line with one gloved hand, the nurse carefully began her examination to decide my fate. Her other hand was a whirl of measuring tape and prodding. You could have cut the tension with a knife. I closed my eyes. Willing everything be ok? "Hmm... yes it's out by at least 3 cm. Stitches look good though" she mused. Her fingers probed deeper into my bruised and swollen tissue. The pain was sharp as a dagger. It took my breath away.

Suddenly, the roaming fingers stopped. Another hand joined the poking, it's fingers pressing slightly harder, more furtively. "Aha!" Exclaimed the nurse. Her partner was as startled as I was, jumping in surprise. "What?! What is it?!" But the nurse was on a different planet, eyes closed.

"Yes. It's defiantly there. The cuff is still in a reasonable place. It's moved, but it will still be able to do its job and tunnel into your vein over time." I couldn't quite allow myself to believe it.
"So it's still ok to use?" She nodded, smiling. The relief on her face was obvious. "And I'm still ok to go home today?!" She nodded again.

"As long as you're happy. Just make sure you keep an eye on it until the stitches come out in 5 weeks time".

I hadn't realised until then that I'd been holding my breath. Slowly I exhaled, relief seeping through me like a warm liquid until every nook and crannie was glowing. It's not often you dance with the devil and come out on top.

*A small clamp like devise that adheres to the skin, holding the line in place.

"Manners maketh the nurse"

Manners cost nothing. I understand you are tired, that you have worked a long and difficult 12 hour shift. That you want to go home to your bed. But having a go at a patient because they are in agony and have had the sheer audacity to ask you yet again for their medication, which they originally asked for well over an hour ago, is not conducive to the situation.

You are not in charge here. The patient is not your subordinate. You are both equals. A nurse is a patient's hands and legs when they cannot move. They are a comforter and soother when pain is out of control. Respect is earned, and works both ways.

When pain relief is asked for, from the perspective of the patient, the message, (and the nurse), often seems to vanish into the ether, never to be heard of again. If no one has appeared by the half hour mark, doubt creeps in. Have they forgotten? Are they doing it? Am I not due it yet? We only press our buzzers to find out what's going on, not to offend or upset you. That is after all why they are there.

To misquote a character from the film Kingsman, "Manners maketh the nurse". 

Hospital buzzer

New life line

My hearing is always the first to come back after a General Anesthetic. The soft but insistent beep of the heart tracer, the melodic tone of a pump declaring that it had finished running

Me recovering back up on the ward.

fluids into its patient, the hushed tonnes of nurses checking vital signs. Sensation is next. Dry lips. Sore throat from the breathing tube. Stiff joints from lying in one position too long. It's confusing at first. Where am I? What's happened? I feel like I'm gonna be sick.

A searing pain across my chest washes over me. I groan . Hearing footsteps I try to see where they're coming from, but my eyes won't open. My muscles in my arms and legs are growing tighter, as if someone is winding them up.

"Rosie?" The owner of the footsteps calls. I try replying, but my tongue won't move. "Rosie, can you hear me?" The mystery voice is soft and kind. I feel a hand on my eyelid, lifting it up and suddenly the warm darkness disappears into a blaze of unfocused colour and shapes. The twitching in my limbs has turned to full blown kicks and thrusts, my arms taking on a life of their own. My chest spasms, breathing becoming shallow and laboured. The colour drains back to black, I can hear frantic footsteps, but they're growing fainter- like trying to listen to a whisper through cotten wool. "She's seizing, get the aneasthatist. She needs medazalam. Rosie? Can you hear me?"

I'm floating on an ocean of nothingness, and there's no one around for miles.

*******

Pseudo Seizures are a regular thing for me after a procedure. The doctors are still not sure why. The current theory of my neurologist is I have a condition called Functional Neurological Disorder. A fancy name that means "something's not working but we're not sure what". He thinks my nerves don't read the messages my brain sends them properly. As with any condition, it is made a lot worse by stress, and having an operation is about as stressful to a body as it gets. 

Diagram depicting placement of a Hickman line

Anyway, I digress. Yesterdays procedure was to replace my

broken Hickman* line, a flexible plastic tube that goes through the chest directly into one of the large veins that lead to your heart. It can be used for all sorts of things, but for me it delivers much needed medications, and all my hydration and nutrition for the day. I guess you could call it my life line.

The operation to have it placed is fairly straightforward. Whilst I'm out of it, dreaming away under General Anesthetic, the surgeon uses an ultrasound to find a suitable vein in my chest before making two small incisions: one just under the collarbone, the other in the chest wall. The new line is then threaded through the later into the vein under live X-Ray, the end of the line ending up under the collarbone and in the opening to my heart. Once the line is flushed and the surgeon is satisfied it is working correctly, the old line is pulled out (it takes some force, as it is designed to burrow into the wall of the vein over time to prevent it falling out by accident), and the two remaining holes are stitched.

By the time I fully came round yesterday I'd spent an hour in theatre, had had two pseudo seizures and had spent just over three hours in recovery. I felt like my chest had been used by an elephant for trampoline practice. But I know the worse is over now. The next few days will be tough, but I am tougher. 

* Hickman Guide from Guys and St Thomas Hospital

The dangers of washing in doctor infested waters

Footsteps. I freeze, razor in hand one armpit shaved. The heavy foot fall comes nearer. I glance at the curtain, preparing to throw my towel over my chest the moment that curtain should even twitch. The shadow passes the end of my bed space, stopping by my neighbor instead. False alarm. 

Washing set up

That was too close. Adrenaline pumping, I hurry on. Deftly painting the other arm in foam. I lift the razor once more. I should have seen it coming. Suddenly my blue curtain shifts and disappears. I sit their half starkers, boobs out, arms up a metaphorical rabbit in very real headlights. A young male doctor and their patient gawped back open mouthed. An eternity seems to pass before I manage to smile and mumble that he might want to close the curtain. His crimson face vanishes as he pulls the curtain shut with such force it nearly comes off the rail. 

Mortified I abandon the deforestation. The sooner I finish the more likely I am to leave with most of my dignity intact. I squeeze shower gel onto the flannel, scrubbing the foam from my body. The scent of strawberry is much nicer than the smell of boiled cabbage and fish emanating from the kitchen down the hall. 

Doused in deodorant and body spray, (hundreds dead thousands homeless as my Dad used to say), and moisturiser drying, I could see the end in sight. Eyes on the curtain, I changed, hands working feverishly. Just dressings to do and I'm home and dry. 

No sooner had I kicked my trousers off, they came. I recognized the voices. My nutrition team. Shit shit shit! I grabbed for the trousers, knocking them of the bed. The voices came nearer. Abandoning hope for them, I tried grabbing a towel, knocking my head on the tv instead. They were outside. "DON'T COME... in" my voice trailed off. 

Too late...

Rush Hour

Blissful sleep finally embraces me, too little and far too late. Someone is grabbing my arm, my heart sinks- blood pressure time. Reluctant to completely loose touch with the comfort of the dark at this ungodly hour I don’t open my eyes, I know the routine well enough to do it blindfolded, and I do, lifting an arm up into the air, finger out stretched. I can feel the coolness of the blood pressure cuff as its wrapped around my bicep. The monitor begins to whir, tightening the cuff till I can’t feel my fingers. Painfully slowly its snake like grip loosens, the nurse makes a comment. Low blood pressure for them, normal for me. As sensation in my hand returns, I pull the oxygen saturation probe off my finger. The nurse mutters, but all I can think about is getting back to sleep before the ward wakes.

Like a flower opening in the first showers of rain in the desert, the sleepy world of T9 explodes into life. Somewhere, someone flips a switch: let there be light. The comforting darkness vanishes into myth. Disjointed voices and footsteps of nurses pass by, loud greetings from friends ready to change shifts. The jangle of passes and keys from those already on duty as their tired feet carry them through the last of the morning medication round. Outside of my thin curtains, the cleaners gather by their cupboard. Chatting loudly in an oral tapestry of languages. They load their carts with mops and bags of supplies, shutting the stacked compartments with a bang. The metal lids of the bins opposite my bed crash closed, their plastic sacks rustling in the cleaners hands.

A low rumbling catches my attention, rising above the general melee. I can feel the vibrations through the floor. Gradually it builds to a crescendo until it stops dead outside the end of my bay. A small wizened man unloads its cargo- water jugs. Every inch of the trolley is covered in a small watery forest of green lids. With the care a parent would take in holding their new born child, he gently ferries his load one by one, depositing each on a patients table. The HCA sat at the desk next to my bed hums tunelessly, as the laundry cage stuffed to the brim with gowns and sheets rattles by. Fragments of conversation float over me. Doctors comparing cases, patients chatting with their nurses enjoying their last moments of freedom before hand over, their keys grinding in the locks of the medication cupboards.

I glance at the clock. 7:50. Breakfast is late, but on its way. I can smell the toast. A gaggle of nurses rounds the corner, gathered so closely round their mobile computer system they seem to move as one. Handover. The strange arrangement of uniforms stop at the end of my bed. I put my headphones on, pretending not to listen as their leader explains: allergies, tubes, observations, abilities and disabilities. No stone of my nursing existence is left unturned. It’s a tight squeeze, a gaggle of surgeons arrives. They want to get to their patient. Gathering like predators before a kill, they circle around the trolley of notes opposite my bed. They close in on their prey- the woman sleeping soundly to my left, gently snoring, doesn’t see them coming.

The ward seems to let out a collective sigh, quietness briefly regaining the upper hand. The cleaners are gone and the nurses away. The first wave of doctors and surgeons are off finding the next unfortunate on their lists. An endless procession of footsteps, dull and rhythmic takes over- the heart beat of the ward.

Ward supplies being delivered.