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. 

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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. 

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".

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.

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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