Stroke Diary (12): Not There Yet

Monday 23rd. August: This morning I'm back at the G.P after a bad night. Once again, I'd had pains in the back of my head, presumably from the cerebellum, making it hard to get comfortable. Call me old fashioned but I'm used to being able to rest the back of my head on a pillow. 'Try sleeping face down', my husband helpfully suggested. The consultation with the doctor was pre-arranged to decide whether I was ready to go back to work but given the head pains, I was signed off for another two weeks, with a phased return from September 6th. She asks if I'm depressed. I think not, although I'm not exactly cheerful.
Through the week, I have contact with my boss and do some planning, which makes work seem very close but also possible. I'll be going back to the city service on reduced hours and with a limited workload. The focus of my remaining five weeks will be to tie everything up before I leave around mid-October.
There's good news. My project is going ahead, several wonderful colleagues having stepped in to make sure it happens. I am relieved and deeply grateful but immediately want to interfere with how exactly they're going to deliver. I have a half hour conversation with one of these saints, going over the details. I know I'm not 'letting go' at all.
This week would have been our beach week in Sri Lanka, where we would have met up with our youngest son. This realisation brings feelings of regret and loss but his e-mails describe his stay in a forest monastery, which was no doubt a more improving experience than a hedonistic week on the beach with us. One of the monks he stayed with contacted me a while back asking to be my friend on Facebook.
It's autumn already and I'm not sorry. We have heavy rain overnight and through the day and it fits my mood. It seems more comfortable to be relatively inactive at home and to sleep in the afternoon, when it's pouring with rain outside. But I do see friends, driving myself to Queens Road for lunch in the busy new bistro. Another friend takes me to Palmer's Garden Centre for coffee and we enjoy the 'caravan roof experience' as rain beats down on the conservatory. The coffee at Palmer's was unexpectedly good. The very best thing about this sick leave is how much I've seen of family and friends and the contact I've had from old friends, some neglected for years. I don't think it was a lesson I particularly needed to learn; I already knew it was important and that I was remiss but the demands of my work and the novel writing often made regular contact difficult. Perhaps next summer I'll have a 'stay-cation' and do it all again.
I'm reading The Glass Room by Simon Mawer, short-listed for the Man Booker in 2009. It was recommended by my 82 year old mother. I'm surprised, as there's so much sex in it and I know she doesn't usually like this. We go to Darlington for two days to see my parents, so I get the chance to ask her. She says the sex is well written and feels natural and in context and she's right. It's a terrific book; one of those I can't wait to get back to and the characters pre-occupy me even when I'm not reading. I wonder why it didn't win. The actual winner, Wolf Hall, glowers at me from a shelf, heavy and unread and I've yet to meet anyone who got past the first few chapters (apart from my mother).
The plan is to get back to my own novel next week. I imagine my characters trapped mid-sentence, just where I left them before my stroke. I wonder how I'll feel about them when I wake them up. Will they still be the same people or will they have changed?

Stroke Diary (11): Ongoing Recovery

16th. August: The second week of recovery at home doesn't begin well. I have severe head pains through the night and wonder if I should go to A&E. I end up back at the G.P on Monday morning but there are no neurological signs of a further stroke, so I go home and have a Very Quiet Day. I might have overdone things at the weekend as I'd felt so well on Sunday, the day had felt almost 'normal'. I'd helped with some gardening, we'd had a walk, I even cooked dinner and I hadn't needed a rest. Since recovery isn't going to be linear, it would really help to have some guidance on what is normal and what isn't.
I have to start listening to my brain and when it hurts, I think it means I've done too much or it needs more water. I reduce the number of visits to one a day and allow for a long rest after lunch. I can sleep for a couple of hours in the afternoon and still sleep at night. I've read that tiredness is a common side effect of a stroke.
Despite the poor start, progress is obvious. I do have fewer headaches and by the end of the week I've driven to a shopping centre and have filled up the car with petrol. I notice how hard it is to filter out competing sounds outside and that I can concentrate on only one thing at a time. I find it tiring to listen to too much conversation. Oh no, I've been left with a male brain!
I have the medical for my new job, obviously a bit more serious than it might otherwise have been. But it doesn't amount to much, more of a chat really and I'm out in twenty minutes. It doesn't look as though any 'adjustments' will be needed. I think I'll have to be a bit careful in secondary schools at lesson changeover times (to avoid being trampled underfoot) and plan my days carefully at first so that I'm not rushing from one thing to another but otherwise, six weeks from now I can't imagine I'll have too many problems. I walk to the railway station to get a taxi home and am hit by a wall of weariness.
One of the changes I want to make is to avoid rushing to the supermarket at nine on a Sunday morning, so I explore Ocado and compose my first shopping list, which I manage to save under the imaginative heading 'Morag's list.' It takes me about one and a half hours, longer than the supermarket but now I have a list I should speed up, unless I get distracted by all the recipes and special offers. It's delivered on Saturday night and I'm pleased that they promise to take away all the carrier bags next time. I have shopped by internet before but the excessive use of bags put me off. I discover that I'm no good at estimating metric weights when I receive a huge box of washing powder. Being raised on imperial measures, the difference between 500g and 1000g, for example, isn't something I can easily visualise. For some reason, I seem to have ordered two packs of minted lamb meatballs. Oh well, at least there are no substitutions. I'll get better at it.
I promise myself that when the insurance money arrives for the cancelled holiday, I'll treat myself to a new computer. I only do three things in a day on my computer; e-mails, Facebook and my blog but it can take hours because of internet problems. It's the one area of my life where 'slow' isn't positive.

Stroke Diary (10): 'and the hardest part...

...is letting go, not taking part', as Coldplay sang on X&Y. To borrow another phrase, this time from the author Margaret Cezair-Thompson, I have to 'small-up' my life. By the time a week has passed since my discharge from hospital, I'm learning to manage this recovery thing. My friends and work colleagues keep me in mind and I have many visits. We go for walks or coffee and they generously bring meals for the freezer, cake or gifts. But I'm learning that I can manage about an hour at most, that outings and visits must be balanced with rest and that if I achieve one task or job in a day, then I'm doing well.
Letting go of work is the hardest thing. I have to accept that a project close to my heart may have to be abandoned because I'm not there to steer it. I can't influence the decision. It's theirs to make and mine to accept. What's clear is that I'm not going to be back to help with it. The headaches persist and finally, I check in with the G.P. She's clear that a return to work, four weeks after the 'event', is being over optimistic.
But I am making progress. By the end of the week, I've abandoned my stick and I think I'm walking almost normally. There are definite periods when the buzzing in my head has lifted. I take a taxi to a pre-arranged appointment with my beauty therapist. Why cancel? The need is desperate. The taxi drops me half an hour early and I'm made tea and taken to the relaxation room, where I recline on a day bed and watch the sparkling lights in the ceiling. I've never had time to use the relaxation room before. But I'm worried how the back of my head feels when I'm flat on the table.
The next day I go to the hairdresser, again for a pre-arranged appointment and after checking on the internet, I don't use the backwash since there is a link between the backwash and stroke. I kneel on the chair and lean forward over the sink. My face and sleeves get soaked and I miss the head massage. Some advice, specific to cerebellar haemorrhage, would help so much. I don't know if I should even be doing these things, particularly as another bleed might leave me seriously impaired.
I speak to the secretary of one of the consultants. She doesn't know if there's anything to report from 'Nottingham'. I say that I feel I've been abandoned without advice and guidance. I can feel my frustration and anger rise and I waste hours mentally drafting a letter of complaint. I have to reign in my outrage as I can feel the harmful stress levels. I've always believed I deal with stress well but that's intellectually. Who knows what's been going on physiologically? I decide to use my feelings to improve my blog, even if no one ever reads it and I'll aim to make the best use of my outpatient's appointment, when it comes. Complaining will only make the medics defensive and I need them 'on-side'.
I investigate the link between vaccinations and stroke on the internet and there doesn't seem to be anything but I'm not convinced as both arms still ache from the jabs I had on the day of the stroke. I also find some potential leads to account for my own stroke; AVM or Arteriovenous Malformation or a condition called Reversible Cerebral Vasoconstriction Syndrome.
When my children were small, I had a tendency towards hypochondria. I couldn't imagine them growing up without me and this made me fearful about my health. I dealt with it using strategies based on cognitive behaviour therapy (CBT) and I may have become too dismissive. I now know there were warning signs I shouldn't have ignored.
In the first week home I gain 3.5 lbs. in weight, which is half a pound a day. A friend points out I've got bigger things to worry about but at this rate, I'll be huge in a matter of weeks. The main problem is a lack of exercise but one thing is certain, I'll have to 'small-up' my portions as well.

Stroke Diary (9): On the Mend

7th. August: Getting up takes forever. Our solution to my balance problems is to bring one of the garden chairs into the shower. It takes up most of the space but works. I manage to wash and dry my hair (a hairdryer at last!). The garden chair is replaced the next day by a picnic box. We are nothing if not resourceful. Each step of the getting up process seems to require long intervals of staring out of the window. Is this what is meant by loss of motivation? I'll have to work on my 'bustle' if I'm going to get back to work any time soon
I pretend to be Virginia Wolf and 'sort the flowers' which have been rammed somewhat haphazardly into various vases. I salvage what I can and create two displays. Flower arranging was the only badge I got at Brownies although I may, on reflection, have also managed to pass parcel wrapping. Both skills have stood me in good stead and I wonder what other key life skills I might have acquired had I not wasted my energy annoying Brown Owl.
My daughter and partner arrive for the weekend and on Sunday we try 'going out' and visit the Botanic Garden for lunch. I manage a short walk with the support of an elbow and my stick. It's a beautiful day and the garden is busy with visitors looking at the sculptures but I don't take much in because I'm concentrating on managing. My walking is improving but I really want to know when my head will return to normal.
My first task on Monday morning (9th. August) is to look at my e-mails. I delete 30/36, most of them links to Facebook. I must have ticked a box which notifies me by e-mail when a friend has posted on Facebook but I find it annoying. I'll see those messages when I choose to look on Facebook.
My second task is to do some research on cerebellar haemorrhage. I have left hospital with no information on steps to aid recovery, what is normal and how to get help if I need it. The Stroke Association website is helpful but I learn that only 1/10 strokes are haemorrhagic and a small number of those occur in the cerebellum. What I read on other sites isn't encouraging. I get the impression I'm lucky to have survived. Perhaps there's not much information on recovery because not many people need it.
I telephone the secretary of the consultant who discharged me to see if there's any news from QMC. I'm still hanging on to the belief that something of importance might have been discovered on that last scan, the one that went in the post. She doesn't work on Mondays.
A friend comes for lunch and we walk to the shops. I feel vulnerable around traffic because it's hard to focus on too many things at once. If a car is doing anything unexpected, like parking on the pavement just ahead, I have to stop and wait until they've finished. The rest of the time I sleep.

Stroke Diary (8): Caring for the Aged

'Shoot me before I get there' is the often heard plea from those in their robust, active-retired 60's, 70's or 80's. The trouble is we become aged incrementally and once there, decisions about what happens to us will fall to our relatives.
I have had close contact with a few ill, confused, very elderly women while in hospital and wanted to blog about this seperately as I have a lot to say (as ever!).
Firstly, I saw none of the neglect of elderly patients in hospital that has preoccupied the media. Particularly during the five days I spent on an acute ward, I watched and heard the nurses take painstaking care with elderly women who needed to be cleaned up, who had bed sores, who were incontinent and who were unable to feed themselves. My opinion from this limited sample of five days is that the women who were being cared for at home by a series of carers were in a worse state than those from care homes. In both hospitals, the LRI and Leicester General, no woman was ever left unfed or left soiled for any length of time.
I found it difficult to be the sole cognitively aware patient on the ward. I would have liked to have been more helpful but I'd had a stroke and it was hard for me to stop a determined patient from trying to get out of bed and escape, or to retrieve her dropped call button, to answer her repetitive questions or to call the nurse when she needed to go to the toilet. The confused elderly need more human contact than they currently get. I'm not saying it's the job of highly qualified nurses to spend their time watching old people but I'm told there are many people 'out there' who are looking for voluntary work and perhaps this may be a role for volunteers.
The confused, aged patient is rarely able to sleep, is not able to read or watch television because they are agitated. Their agitation stems from anxiety, which leads to repetitive questioning and stereotypical behaviour such as folding, sifting, sorting or hand-rubbing.
I was struck by the similarity with the behaviour of young children with autism and I feel there is much to be shared in terms of strategies. The elderly people I met would have benefitted from visual systems, for example photographs, symbols or objects e.g 'night/day','toilet','bed' to support their understanding. A visual timetable would also help, so that the sequence of the day can be made clear e.g 'first lunch (symbol), then visiting time (symbol'). Choice boards would be a good idea. 'Do you want tea (object/symbol) or coffee (object/symbol)?'
Elderly people need someone to listen to what they mean. Amidst the repetitive questions and comments without any obvious context, something is being communicated. But it needs an adult with time to sit, listen and make a guess. To help with the agitation, these patients need someone to show them pictures, to play simple games or puzzles with them, to help bring them out of their inner preoccupation. Everyone needs to avoid the relentless, forced jocularity which is often the way they are spoken to. There isn't much humour in being 95. The elderly patients didn't get the joke and nor did I.
Incontinent patients, like children who aren't yet toilet trained, need a regular toileting schedule. This wouldn't prevent all accidents but might cut down on the frequent need for cleaning-up that I observed. This would be time consuming but it could easily become just another regular procedure such as taking patients' blood pressure.
I shared some great moments with my aged companions. I enjoyed hearing their feisty answers to the competency tests ('you can stick your tongue out all you like, when's your birthday?') and struggled myself to remember the date of the end of WWII. I enjoyed sharing, at second hand, the devotion of long-term partners and their children, in particular a tiny, aged couple who couldn't bear to be separated by her illness. When he left with their children, she made repeated attempts to get off the ward using her mobile tray for support, so that she could follow him.
Every one had a complex personal story. I heard one old lady tell the staff that she had heard her baby cry after its birth and then she was told he had died. She never saw or held the baby. Being in hospital triggered this memory. Perhaps she had never spoken of it before.
I enjoyed their refusal to comply, to be meek and accepting. I watched one old lady refuse food from a spoon, then finish the meal herself as soon as the nurse was called away.
But I was relieved to get away. I found the constant worry of monitoring my companions too much. They needed more help. I was advised to draw my curtains around me, so that I couldn't see what was happening and I'm sorry to say that in the end, I did.

Stroke Diary (7): Going Home

My sister, a G.P with two children who are junior doctors, once said 'never fall ill in the first week of August'. This week is junior doctor changeover week across the whole country, where they all move around posts. There's another week later in the year but since I don't know when it is, this isn't much use as a warning. On the 3rd. August, the consultant said I could go home once the Physios had checked my mobility on stairs and walking outside. I brought up the scan I was expecting. He couldn't find any mention of it in the notes so either the junior doctor hadn't written it up, hadn't actioned it or both (see Stroke Diary 6 on the importance of accurate file notes if you're an educational psychologist). We couldn't check with him as he'd already moved on. I don't know what went wrong but a nurse tells me that the scan has now been organised.
The following morning I have another CT Angiogram and on 5th. August I'm told by the consultant that 'Nottingham' (oh no!) have to see a CD of the results. I could go home but it would be better to stay around and find out what they've got to say. On Friday 6th., I eagerly await the ward round. At last, there will be some results. I need to know for myself but I'll also be able to answer some of the questions of friends and family. But when the consultant checks in the file, there's nothing. The (new) junior doctor is asked and I hear her say she sent the CD by post instead of by courier 'because she didn't think it was important.'
People new in post will make mistakes and have to be supported but I hope I'll never hear a new educational psychologist say within earshot of a child, parent or teacher that any part of their concern 'isn't important'. I could get very angry but I know the stress won't do me any good. It is, however, a mistake too far.
During these last four days, I am visited by friends who bring creative gifts, fruit (always in short supply in hospital) and magazines that I'd never have thought of choosing myself and which don't require much concentration. They take me for walks along the corridors with my stick. My gait is wide-legged, like a toddler and my head feels like it's trapped in a wind tunnel. I'm okay as long as I can hold on to the hand rails along every corridor. My husband sensibly visits when no one else is coming and he walks with me outside. My youngest son telephones from India, keen to come home. He had been texting but none of my replies had reached him. Although my husband and his older brother and sister had been keeping him up to date it's important that we talk and he hears for himself that I'm not much different.
The ward has a visit from a petting dog. While he's lovely, a dog is not high on my personal list of ward visitors. A beauty therapist with hot wax, tweezers and skills in stroke-compliant Indian Head Massage would rank a little higher. To signal my intention not to stick around much longer, I start to wear clothes instead of pyjamas, which further confuses my ward companions who think I'm a member of staff.
The Physios finish their assessment and I'm discharged. Driving home, the world seems smaller and more grey. In the house, things lie exactly where I last put them down and in my work bag, I find my mouldy packed lunch box from 22nd. July. But it's wonderful to relax without the company of the confused elderly, to watch television and (very early) to settle into my own, warm bed. My view of the NHS? Everyone works very hard, everyone is kind but lines of communication need some attention.

Stroke Diary (6): The Stroke Unit

On Monday 2nd. August I meet another group of professionals, the Occupational Therapists. I'm invited to Breakfast Club, where the patients make tea, toast and wash up. Fortunately, I'm fine at all of this. I'd really like an assessment of my writing and I.T skills but I guess I can sort that out for myself at home. The O.T's and Physios are kind, enthusiastic and fun and it's good to have hot toast and apricot jam instead of cold, chewy toast and marmalade. I am a little uncomfortable being assessed, even though there are lots of jokes and laughter, and I resolve to review policy on observations of children once I'm back at work. I wonder what children who are old enough to be aware that they're being observed feel about it? I remember observing a four year old with autism at his playgroup. I followed him around the activities with a clipboard, recording his attempts at social interaction and his use of language. I turned round to find him following me with a clipboard, carefully making marks on paper and wearing a pair of toy glasses from the dressing up box. Touche!
I meet four different consultants while I'm on the Stroke Unit and each has a slightly different take on my case. I'm warned there may be no answers, that my cerebellar haemorrhage may be 'just one of those things'. That will be difficult to accept. I want an answer. If I don't know why it happened then how can I prevent another?
The ward round has a standard format. The consultants are usually very busy, having rushed from a meeting or an urgent case and are dependent upon a junior doctor to interpret the file notes from any previous consultation. They're also able to refer to a computer on a trolley which shows them the patients' brain scans. I'd love to see my own brain but I don't ask. They seem so busy, I don't want to hold things up. I'm reminded of the importance of a good file note, which should include a very brief summary of any conversation and a few clear action points. I'll go back over this with my current team and hopefully my new team.
I ask again about whether there are any results from 'Nottingham' and the junior doctor is asked to chase this up. Later in the day, I'm told that another CT Angiogram has been organised.
I'm not too well. I have headaches and nausea and I feel ill all day. If I turn my head sharply the world spins like a top. I report this but the consultants don't seem worried. It's like watching the stewards on a flight. If they're still walking up the aisle, serving coffee and chatting during tubulance then nothing can be wrong, can it? If the consultants aren't worried, then I won't be either. Maybe this is 'normal'?
Apart from Breakfast Club and the excitement of the ward round I sleep. I wake and find a friend from work has left me a book. It's by a Jamaican author, Margaret Cezair-Thompson and is her first novel. Once I'm feeling better I'm quickly absorbed by it. In The Pirate's Daughter, she skillfully creates the world of Jamaica in the 1950's to the 1970's, weaving historical events and the lives of real people into an intriguing fictional plot.
My young 'ward-mate' makes a fantastic recovery and is soon ready to go home. I'm delighted for her but envious. I remind myself that she's probably twenty years younger than me. I'm left with three confused, elderly women. The fact that they're all probably forty years older than me makes my stroke seem more abhorrent. Despite the posters on the corridor that say stroke can happen at any age, there isn't much evidence of this on the wards.

Stroke Diary (5) : The Stroke Unit

Friday 30th. July: Ward 8 of the Stroke Unit was a very different place from an acute ward. I arrived late to a quiet, darkened, sleeping environment. I noticed that one of the nurses was a nun, wearing a wimple identical to the headscarf worn by the muslim nurses. Religious women have always covered their heads, I thought.
At breakfast, I hankered for the bran flakes and banana offered at the LRI. The only wholegrain cereal on offer was Weetabix, which required immediate sitting up and alertness to avoid a soggy mess.
The others in the four bedded ward were two elderly women and one young girl, who seemed very ill. On the first morning I met Professor R (no first names here) who gave me practical advice about a phased return to work and when I could expect to drive again. I explained my jobs dilemma and he reassured me that I would be well enough to take up my new post. I tell him about the CT Angiogram, taken two days before and that I'm 'waiting on results' from QMC. He doesn't seem aware of this and says that they have all the facilities to do their own tests and have a direct computer link with QMC. So why did I spend five days in the LRI?
I start Physiotherapy. The Physios all seem to be tall, slim, good looking and shining with health, like an advert for Switzerland or Nike. My walking and balance skills are assessed and I go to the Physiotherapists 'gym' session, which is a circuit of mobility and hand-eye coordination activities. I'm not too bad at the hand-eye stuff but rubbish at the mobility tasks, particularly weaving between cones. I'd certainly be picked out by the police for a breath test if I was spotted walking from my car.
In the afternoon, it's visiting time. Friends and family bring the outside with them and the ward is transformed from it's habitual quiet, somnolent state. I think about how much the cards, flowers, visits, texts and phone calls have mattered to me. I resolve to try to be more caring in future. A nurse comes onto the ward and says my mother has telephoned. I can see she's laughing and I can imagine why.
Then it's the weekend and not much happens medically. The ritual of meals becomes important as the staff who bring around the tea, who take orders for food and who serve the meals seem to have more time to talk. From this, I learn that the focus of everyone on the staff is the move of the entire Stroke Unit to the LRI next week. It seems that long term working relationships are to be disrupted and it has been hard to organise work rotas around the move. This is the only time I see any person, staff or patient, show any emotion.
My eldest son comes for the weekend and makes himself useful at home by running errands and visiting me on Saturday afternoon. One of the few benefits of my situation is to have a 'one to one' with my son and I don't waste it. The next day, I am struck by the incongruity of the partnerships that can arise from hospital visiting as my son, my sister and a work colleague share a conversation around my bed.
Around ward routines and visiting, I sleep or read. My companions are not able to watch television, so ours is thankfully off. I can't imagine watching a whole programme as I did last Sunday. In some respects I'm improving but in the brain department things seem to be worse.

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.

Stroke Diary (3): Still Waiting for QMC

There is no news from Queens Medical Centre. Yesterday was Sunday, the doctors re-assure me on their ward round. Everyone will be back at work today, so we should hear something. What is the social etiquette of a ward round or nurse changeover? Should you, as patient, make eye contact, smile and nod as you are discussed? Or even chip in? Or is it more polite to stare out of the window, pretending not to hear, until you are spoken to?
Now I'm no longer on a drip, I manage a shower. It requires military planning and feels chaotic and painstakingly slow. When I drop something, the world spins when I bend to pick it up. But it's also blissful to sit down under a stream of warm water, to feel my skin prickle and relax, to smell my own, chosen bathroom lotions. It feels like an achievement. I also start going to the toilet independently, planning my route down the ward, staking out the hand holds before I set off. I crave fruit and think about mango and avocado salad with prawns. I wonder what Jamie Oliver would do with hospital food. Is there really a need for a three-course hot meal twice a day? Does anyone still eat like that?
I sit in my chair by the window, staring at the Connect Four tower that I can see from my office but from the other side. I ring work and tell them what's happened, I speak to my secretary and cancel appointments. It doesn't seem real. My mobile phone is heavy with texts. It's a struggle to answer them all. I sleep and sleep. At the end of the day, there is no word from QMC. The other patients come and go, the very elderly returned to their half-lives, the suicides restored to the life they don't want, the chronic alcoholics wasting the lives they have, the mentally unstable unwittingly destroying the lives of those who care for them.
I'm visited by Hospital Radio. I choose Ruby Tuesday by Melanie for the request show that night. Listening to Hospital Radio is free and I hear my request, 'for Morag, on Ward 16'. My TV money has run out and I'm reluctant to buy more because I'm moving on aren't I?
On Tuesday morning I hear from QMC. The doctors tell me there's nothing urgent to be done (which I guess means it's not an aneurism) but they want another scan done, this time a CT Angiogram. I can't move to the Stroke Unit until the scan has been taken. I have to wait. This is actually nonsense. I could have moved to the Stroke Unit and the scan could have been done there but I don't know this yet.
Another big step forward today; I manage to wash my hair. It's hard to believe but there's no hairdryer on the ward. I'm not allowed to use my own (brought with all my possessions in the suitcase) because patients 'musn't use their own electrical equipment'. I understand this, I know about PAT testing, but it's hard to understand that no one has thought that women patients will need a hairdryer. Here's a tip, if you're having a stroke, go to the hairdressers the day before (and get your legs waxed- those hairy legs matter to you, if not to anyone else). The matron at boarding school talked a lot of sense when she explained that clean pants were necessary every day because if we were run over by a bus, she wouldn't be shamed at the hospital.
Another patient was told off for charging her mobile phone so after dark, when the night shift starts, I secretly charge mine, hiding the charger behind the curtains. I also start to sabotage the persistent fans. Such minor rule-breaking brings a certain satisfaction.
In the event, my hair dried like a bush but the friends that visited in the afternoon were too polite to comment. They brought fruit and magazines and I let them see me walk. We talked about the nurses. Revenge is sweet.
I telephoned my potential new employer and relayed what I'd been told; the bleed is small, it might never happen again, I should make a full recovery. Since I haven't yet seen a specialist, this is only somebody's guesswork but I don't know enough to question. It's what I want to hear. She is kind, re-assuring and we agree to speak again.
By 'lights out' (optimistic since whenever a new patient appears they go back on again) I still haven't had my CT scan. That night I start to feel nauseous and the headache starts. I worry that the bleed has started again.

Stroke Diary (2): Waiting for QMC

Ward 16 was an acute ward, not somewhere patients were expected to linger. Day and night, patients arrived, were assessed and were moved on, which meant that the traffic was continuous and sleep was impossible but the interest level for an observer like me was high. Sick people arrived with their distraught families and I could listen in to what had happened and the talk of the nurses and doctors. Curtains provide only an illusion of privacy. I had no idea how sick I was. In fact, my condition was poor. I'd managed a wash by the bed but I needed help to get to the toilet. If I tried to walk alone, I swayed like a drunk and was at risk of toppling over. My head felt tight and heavy, like I'd suffered the worst flu. But I texted friends, pleased I could still do so, I slept a great deal and when awake, I eavesdropped. It was shocking but funny to hear confused, elderly Asian ladies, who otherwise needed an interpreter, telling the nurses to 'fuck off'. I also overheard a spectacular row between a teenage girl and her mother. The girl had rung one family member in the morning, to let them know she was being discharged. The message had got confused and poor mum arrived late in the afternoon, without a car, carrying a bag of things her daughter might need overnight. The air was blue.
My stay had started energetically, with an MRI scan first thing on Sunday morning 25th. July. I was impressed, recalling Gerry Robinson's television series on the NHS and how critical he had been that facilities stood idle in the evenings and at weekends. The porter was a young man who told me how he had to be busy, how he hated standing around waiting for patients. He helped me complete a questionnaire outside the scan room and I noticed that his reading skills weren't that great. On the way back to the ward, he and another porter complained above me and around me about their working conditions. I wanted to say to the lad that maybe he was lucky to have a job. He should hold onto it, see where it might lead.
Being wheeled around the hospital made me think of the many times I had energetically patrolled these corridors and drummed my toes impatiently outside the lifts, when I was the educational psychologist for the hospital school. I was glad it was the holidays. I wouldn't bump into any teachers. I didn't want to explain; not yet.
The MRI scan was less frightening than I'd expected. I was very aware of the radiographer's breath, perhaps because my sense of smell had been affected but once inside the tunnel, I found that there was a re-assuring periscope arrangement where I could see him (but not smell him). I had headphones, which played music and an alarm button if I panicked. It was noisy, exactly like a washing machine and the music didn't mask the sound but I found it helped to try and match the length of the tracks to the noise. So if the radiographer said 'here's another scan. It's very noisy and will last for four and a half minutes', I thought of it as one and a half tracks. When I came out, I suggested to the radiographer that he try to pair the length of the tracks to the scans but I don't think he got it.
Back on the ward I'd been joined by a woman I vaguely recognised. I thought she might have been on some training I'd given a few weeks before. Her husband sat with her for a while then left. The rest of the patients were elderly women or very sick Asian ladies, who all seemed to have sons who might have been models. The absence of affection struck me. No one kissed or hugged their women when they left.
It was the end of Nil By Mouth and I over-optimistically ordered lunch which I couldn't eat. But a cup of tea was wonderful. At visiting time my daughter and husband arrived and our talk was cheerful, as it so often is in hospital. I explained that I was on my way either to Queens Medical Centre (QMC) or the Stroke Unit at Leicester General. I wouldn't be on Ward 16 long. We were just 'waiting' on word from QMC.
My daughter had rushed from her home in north London as soon as she'd heard and I think it was a relief to her to see that I looked the same and could talk normally. My husband had had the task of telephoning family and friends and amidst the widespread shock, everyone wanted answers, 'how could this happen?' I had my own worries. I was between two jobs. I had resigned from one and had not yet signed a contract for the other. I was expected to deliver three days of training in early September. I had left so much work undone, including a half finished chapter of my novel. The holiday would have to be cancelled; we wouldn't be able to see our youngest son in Sri Lanka. The ordinary turn of life had been interrupted. I'd been brought to a full stop.
Later that night my husband brought the entire contents of the shower and my dressing table in a suitcase in the hope that 'some of it would do'. The senior nurse on duty sat with me for a while and told me about his family, his working hours, his staffing problems. I switched on my professional 'listening face'. I worked out how to put money into my personal T.V and watched the first episode of the new Sherlock Holmes. Later, that would seem like a heroic level of concentration. My brain was still swelling.
Meanwhile, the fans roared and open windows spilled cold night air across me as I shivered in my hard, pillowless bed. The other patients came and went. The friendly lady opposite disappeared in the middle of the night and I woke to a whole new set of companions.

Stroke Diary (1)

On Thursday 22nd. July I had a stroke. In the morning I'd had some vaccinations for our holiday in Sri Lanka on August 12th. but otherwise it was a normal day. Although it was the school holidays, I had seen a small child at home, as a statutory report was required. The visit had been stressful as the child ran around the room,snatched my glasses, threw things. The parents had seemed reluctant to intervene, perhaps intimidated by having a professional in their home. The father sat on the floor watching me and I was aware that every time I leaned forward, either to pick up something the child had thrown or to arrange some toys on the coffee table, he was getting an eyeful of cleavage. As it was a muslim household, I felt concerned that there might be a complaint about my dress. I also managed to fit in a visit to my hairdresser at lunchtime, to have my fringe trimmed. So it was busy, but not unusually so. By early evening I felt tired and a litle unwell but thought it was a reaction to the vaccinations.
At around 7 pm, I had a severe headache. It was sudden and felt like a vice. With hindsight, I think I felt a hot rush at the base of my skull. The headache was not unusual, I'd had a few as severe in the past. I waited for it to settle and then I started to feel sick. I tried to get to the bathroom but couldn't make my legs work properly. The world spun and I couldn't stay upright. I was sick for 12 hours, unable to move from the bed. In the morning, we rang the G.P and over the telephone, I was precribed some anti-sickness medication. At this point, the vaccinations were still in the frame.
By Saturday morning, although the sickness had stopped, I was no better and we called the out of hours doctor. We were told we were number 25 on the list for a home visit. They rang back and asked to speak to me and I gave a detailed account of what had happened. An appointment was made for me at the Urgent Cases Centre (a G.P. practice) at the Leicester Royal Infirmary. I was reluctant to go as I had to get up, shower and dress but I managed this and was driven in the back of the car to the hospital. I needed a wheelchair to get to the Urgent Cases Centre and found the wait to be seen intolerable. A television on the wall droned with the sound of motor racing and the hot waiting room seemed full of well, lively people. But the doctor was thorough. He took a full history and did some neurological tests. He looked at me and said, 'forget the vaccinations, I think you've had a stroke.'
After that it was A&E, where a CT scan confirmed his diagnosis. I remember the doctor breaking the news. I'd had a bleed in the brain, in the cerebellum. I'd like to say that I was aware of the implications but I think I must have been too ill to care. It seemed more important, right then, to find somewhere warm and sleep. Left alone, we talked about the other patients; middle-aged women who'd had a 'funny turn', the breaks and fractures and those comatose from alcohol.Within a couple of hours I was on a holding ward, freezing cold, asking for blankets. Although the weather had been hot, it was evening and all the windows were open and the air conditioning roared above me. My husband went home to get my night things and my companions were an Asian lady, her husband and a tall, handsome son who spent his time texting. Late at night, clutching my blankets, I was transferred to a wheelchair and moved to Ward 16, my home for the next 5 days. My journey through the quiet hospital, was accompanied by the relentless banter between the nurse and the porter that both excluded me, yet required me to be an amused audience. This model of interaction was the standard fare of life on the wards.
On Ward 16, quickly taking in the open windows, the fans whirring, the patients lying under a single sheet, I clung onto my blankets. My boarding school training clicked in; hoard, hoard, hoard. For the first time I heard the magic letters 'QMC'. They want you to lie flat, a nurse told me, snatching away my pillow. No one explained and I didn't ask but QMC (Queens Medical Centre) were clearly in charge. I am Nil By Mouth. I don't care. I would never eat again.