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. 

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.