Sunday 15 August 2010

Stroke Diary (4): Yet More Waiting for QMC

Now it's Wednesday 28th. July. I am left out of the ward round and no one makes eye contact. I'm an embarrassment, a shadow sitting by the window. I start to cry. I am truly miserable but also deeply frustrated. I'm a person who makes things happen. I'm good at 'kicking ass' on behalf of others. I can't believe the inaction, the poor co-ordination, the lack of energy that is the hallmark of my treatment so far. I ask a nurse if anyone is chasing up my scan? I want the telephone number of the person at QMC who is managing my case. 'I'll ring him myself', I threaten between sobs. They're desperately busy with some very sick old women who've arrived in a bad state but my distress brings some action.
A doctor appears, previously met on A&E. He's surprised I remember his name but I point out, a little sharply, that there's nothing wrong with my cognitive functions. He's clearly embarrassed that I'm still on Ward 16 and tells me he'll chase up the scan. He also says that 'nothing magic' will happen at the Stroke Unit but I'll at least get some Pysiotherapy and should get a better night's sleep. I wonder what he's getting at. Is it a warning about the Stroke Unit (don't expect much) or is he trying to make me feel better about the time I've languished on an acute ward.
I tell him about the headache at night and the nausea and he finds me some pillows. These are like gold dust. When I've asked the nurses, I've been told there are none.
I feel hopeful that I might now see some co-ordination but in the afternoon, an ambulance arrives to take me to the Stroke Unit at Leicester General. I should have allowed them to take me but I argued that I couldn't possibly go now, I was waiting for a CT Angiogram. The ambulance driver finds a nurse who explained to me, as if I was indeed cognitively impaired, that I'd had all the tests I needed, I could go. I insisted that a doctor (always pull rank) had told me that the warlords in Nottingham had requested another scan. She checked. It seems there had been a problem with my notes.
By late afternoon, I'd been wheeled back through the corridors and lifts to Radiography. I waited outside the scan room with a couple of teenage girls, the one on the trolley had taken an odd turn when they were out shopping, the other was her friend. We all sit and text. No one speaks. I noticed some pillows tucked onto a shelf and make a note to tell them back on the ward.
There is uncertainty that my canula, the awful plastic device they put into the back of your hand before any operation, will work since it was fitted in A&E several days ago and has been roughly treated by me, in my fumbled attempts to wash and dress. Thankfully, it works. I felt the dye swoosh around my veins and a prickle in my groin and my brain as it reached its target.
Later, the same doctor appears to explain that a CD of the scan has been sent to 'Nottingham' and we could expect the results tomorrow. And tomorrow, I would definitely move to the Stroke Unit.
On Thursday 29th. July, a week after the stroke, I arrive at last on the Stroke Unit after midnight. But I spend the entire day on Ward 16. An orderly teases me, because I read the Times every day. She thinks I'm pretending. I'm now a fixture, an institution.
A doctor finds me and says that 'Nottingham' can't read the CD. It's a software problem. I despair of this link with QMC. It hasn't worked for me and has prevented appropriate action. Looking at the problem from a management perspective, it's obvious that the consultation model has failed because I'm no one's responsiblity. If I was actually a patient at QMC, they would have made decisions quickly because I would have been blocking up one of their beds. In Leicester, the doctors felt no responsibility for me because I wasn't their patient.
I have not been able to organise visitors apart from my husband for a couple of days as I couldn't be sure where I would be, so I spend my time sleeping, reading and staring out the window. People say to me it would 'drive them mad' but when you're very ill, many hours can pass doing very little. Think of when you have had a bad flu and take to your bed with only Radio 4 for company. The day passes in a fog of half-remembered programmes.
That night, a Stroke consultant appears. He's the first I've met and his presence is due to a chance encounter downstairs with another doctor. He assesses me, doing the now familiar neurological tests and takes a brief history. He says he'll move me that night. The nurses say it could be any time, so I go to bed as usual. About 12.30 a.m the ambulance arrives. I'm wrapped in blankets and wheeled through the deserted hospital, past the shuttered WRVS shop and cafe, to the outside. Outside smells so raw. On the drive to the Stroke Unit, the paramedic asks me what I do 'in the real world' and tells me about his child who has seen a county educational psychologist. She's done a good job, he says. I'm pleased to be spoken to like a person rather than a patient and to hear this good report about my new team. I try to adjust my features into 'professional mode' but actually I'm exhausted.

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