I hope this will be my last Stroke Diary, since on the 23rd. December I was discharged by my consultant. There are no guarantees. The stroke was without cause and having had one, it's more likely I'll have another. But for now, it's over.
I don't have a firm diagnosis. The consultant wasn't able to commit to Reversible Cerebral Vasoconstriction Syndrome (RCVS) but he did concede that I have a brain that 'tends toward vasoconstriction', which amounts to much the same thing.
I was taken aback by the results of my last CT Scan, which showed the area of brain damage. I thought I'd had a tiny bleed, so was shocked to see a dead, white area in the cerebellum, the size of a fifty pence coin. It's hard to accept that it will never recover; we're used to things healing. I've been left with problems with balance and fine-motor coordination, made worse when I'm tired, so I'm glad I don't work as a bomb disposal expert. The literature suggests I might also expect problems with working memory and processing information. And I thought it was just the new job!
I parted with the consultant on good terms; we shook hands, past tensions forgiven. It was Christmas and I could have some champagne. I could also be insured for overseas travel. There are two things which will never be resolved, so maybe it's enough to leave them behind here: I shouldn't have been left on an acute ward for five days without seeing a specialist and I shouldn't have experienced the confusion and delays that were attributed to the link with Queens Medical Centre. One minor thing still puzzles me, that hospital wards don't think they need to provide a hairdryer. Even if I buy one for both wards, would they offer them to patients? When I asked, it was as if I had requested a hedge trimmer.
Thank you for reading this Stroke Diary and particular thanks to Peter Levine for linking my blog to his: The Stroke Recovery Blog. For a short time I had many more readers in the USA than I could ever have expected due to this generous link. If you have recently had a stroke, or if you are still on the road to recovery, I wish you well.
Thursday, 30 December 2010
Saturday, 27 November 2010
The Hunting Party
This is my second novel, written while I was still with Charlie Viney's Agency. It was Charlie's idea that I try writing historical fiction. He suggested the true story of Winifred, the Countess of Nithsdale's rescue of her husband William from the Tower of London, the night before his execution for his part in the failed Jacobite rebellion of 1715. Since it's a true story, it's really fictionalised biography rather than a novel.
I enjoyed the research but historical fiction is not a genre I read, so writing the novel didn't come easily. I remain fond of Winifred and several agents have shown interest. It's currently on the long-list for the UK Authors Opening Pages Competition.
The Hunting Party will be discussed on December 15th. at 8 pm on the on-line book group for completed but yet to be published novels. If you want to read the novel and take part in the discussion visit http://yettobebooks.wordpress.com
I enjoyed the research but historical fiction is not a genre I read, so writing the novel didn't come easily. I remain fond of Winifred and several agents have shown interest. It's currently on the long-list for the UK Authors Opening Pages Competition.
The Hunting Party will be discussed on December 15th. at 8 pm on the on-line book group for completed but yet to be published novels. If you want to read the novel and take part in the discussion visit http://yettobebooks.wordpress.com
Saturday Night
My Saturday nights are a joy. Friday is the one night I go out, still being on adrenalin from the week and Sunday night is shrouded in gloom due to the imminent arrival of Monday morning.
The evening kicks off with Strictly Come Dancing, a glass of wine and if I'm lucky a log fire. I've come back to Strictly after boycotting them for sacking Arlene Phillips. The success of programmes like this depends on honest judging by people who know what they're talking about, which is why I like Craig's comments. I'm annoyed by Anne Widdecombe and her primary-school 'clever' answering back. She'll never be funny, nor should she try to be, having spent years as an unpopular but serious politician. It reminds me of George Galloway on Big Brother. Why do they do it? And another thing...after years of haranguing from Gok, Trinny and Susannah about the importance of a good bra, can the Rt. Hon. AW be the only one not to have got the message? I'm also cross about Pamela Stephenson for claiming to be a 'serious' psychologist. I wonder how her clients feel about her now?
Next comes Merlin, an inoffensive drama with two nice looking young men in the lead roles. It has the same plot every week which goes something like this: the king, Luther, suspects someone of using magic in Camelot where it's been banned. Merlin (doing work experience as the young Arthur's servant) secretly uses magic to sort everything out and peace is restored.
After that it's a quick flick over to the X-Factor to cheer on Mary (bosomy club singer, who'd be better doing a bit of jazz) before Wallender (the Swedish version) on BBC4, although recently it was no-lips Branagh in the English version. I was surprised to recognise some of the police officers from the Swedish version moonlighting as crooks in the English version.
Meanwhile, I have my laptop on my knee, checking e-mails, posting on Facebook and sometimes writing my blog. It's called multi-tasking or 'not paying attention'.
The evening kicks off with Strictly Come Dancing, a glass of wine and if I'm lucky a log fire. I've come back to Strictly after boycotting them for sacking Arlene Phillips. The success of programmes like this depends on honest judging by people who know what they're talking about, which is why I like Craig's comments. I'm annoyed by Anne Widdecombe and her primary-school 'clever' answering back. She'll never be funny, nor should she try to be, having spent years as an unpopular but serious politician. It reminds me of George Galloway on Big Brother. Why do they do it? And another thing...after years of haranguing from Gok, Trinny and Susannah about the importance of a good bra, can the Rt. Hon. AW be the only one not to have got the message? I'm also cross about Pamela Stephenson for claiming to be a 'serious' psychologist. I wonder how her clients feel about her now?
Next comes Merlin, an inoffensive drama with two nice looking young men in the lead roles. It has the same plot every week which goes something like this: the king, Luther, suspects someone of using magic in Camelot where it's been banned. Merlin (doing work experience as the young Arthur's servant) secretly uses magic to sort everything out and peace is restored.
After that it's a quick flick over to the X-Factor to cheer on Mary (bosomy club singer, who'd be better doing a bit of jazz) before Wallender (the Swedish version) on BBC4, although recently it was no-lips Branagh in the English version. I was surprised to recognise some of the police officers from the Swedish version moonlighting as crooks in the English version.
Meanwhile, I have my laptop on my knee, checking e-mails, posting on Facebook and sometimes writing my blog. It's called multi-tasking or 'not paying attention'.
Saturday, 30 October 2010
Stroke Diary 16: Endings and Beginnings
It's never a good idea to start a new job less than three months post-stroke unless it involves shorter hours and a more gentle pace than your old one. But my stroke occurred three weeks after I was offered a more senior post in another local authority and only a few days days after I had resigned. I knew it would be hard but starting my new job on time and in reasonably good health became a personal goal. Besides, I had been told that my cerebellar bleed was Very Minor and really, not worth troubling about overly much.
I've now spent two weeks in my new job and life is achieving some equilibrium. The last week in my former Psychology Service drew deeply on my physical and emotional reserves. Clearing out 21 years of junk against a rapidly diminishing window of time resulted in some long days and the farewells, formal and informal, meant facing up to the consequences of the decision I had made pre-stroke; to leave behind a supportive team, an established role and close friendships. And how would I cope in the leafy suburbs and villages of rural Leicestershire, away from the chaotic but positive energy of a multi-cultural city?
With the inevitable lack of sleep over the weekend, it was a zombie who turned up at County Hall on the 18th. October. No one seemed to notice that it wasn't me and I got through each day with a fixed smile and glassy eyes, experiencing a sense of unreality (I'm only a visitor here) with waves of loss for everything familiar and known. I'd been honest with my new employers that I am, despite appearances, still recuperating from a stroke and this had been sensitively acknowleged in my induction. But a stroke is a stroke, no matter how minor and by the end of the first week my brain was protesting. I had head pains and a numbness in my lips, worrying symptoms that I had ignored in the few days prior to my cerebellar bleed in July. A brain scan had already been organised for the folllowing Tuesday, so there was nothing to do except wait. I've since had the scan and have heard nothing, so I'm assuming everything is okay.
I don't know how other stroke patients feel but for me it's as if I have little control over whether I have another stroke or not. There are no risk factors to manage, such as smoking, drinking or using illegal substances, I have no medication to take and a scan will reveal little unless I've already had another bleed. I try to pay closer attention to my body, particularly the goblin with a hammer that now lives at the base of my skull but since there isn't much I can do, it's best to try and forget about it.
The second week has come to an end and I am already feeling established and purposeful at work. With every loss there are gains. In my new world there isn't a long hours culture and I have been shocked to see the inside of my own home by 5.30 almost every evening. I can already see the strengths of the Psychology Service I have joined. I can feel the return of my motivation to finish my current novel instead of staring at undemanding TV every evening and I'm ready to get my diary out to see my friends.
I've now spent two weeks in my new job and life is achieving some equilibrium. The last week in my former Psychology Service drew deeply on my physical and emotional reserves. Clearing out 21 years of junk against a rapidly diminishing window of time resulted in some long days and the farewells, formal and informal, meant facing up to the consequences of the decision I had made pre-stroke; to leave behind a supportive team, an established role and close friendships. And how would I cope in the leafy suburbs and villages of rural Leicestershire, away from the chaotic but positive energy of a multi-cultural city?
With the inevitable lack of sleep over the weekend, it was a zombie who turned up at County Hall on the 18th. October. No one seemed to notice that it wasn't me and I got through each day with a fixed smile and glassy eyes, experiencing a sense of unreality (I'm only a visitor here) with waves of loss for everything familiar and known. I'd been honest with my new employers that I am, despite appearances, still recuperating from a stroke and this had been sensitively acknowleged in my induction. But a stroke is a stroke, no matter how minor and by the end of the first week my brain was protesting. I had head pains and a numbness in my lips, worrying symptoms that I had ignored in the few days prior to my cerebellar bleed in July. A brain scan had already been organised for the folllowing Tuesday, so there was nothing to do except wait. I've since had the scan and have heard nothing, so I'm assuming everything is okay.
I don't know how other stroke patients feel but for me it's as if I have little control over whether I have another stroke or not. There are no risk factors to manage, such as smoking, drinking or using illegal substances, I have no medication to take and a scan will reveal little unless I've already had another bleed. I try to pay closer attention to my body, particularly the goblin with a hammer that now lives at the base of my skull but since there isn't much I can do, it's best to try and forget about it.
The second week has come to an end and I am already feeling established and purposeful at work. With every loss there are gains. In my new world there isn't a long hours culture and I have been shocked to see the inside of my own home by 5.30 almost every evening. I can already see the strengths of the Psychology Service I have joined. I can feel the return of my motivation to finish my current novel instead of staring at undemanding TV every evening and I'm ready to get my diary out to see my friends.
Wednesday, 6 October 2010
Stroke Diary (15): High heels and the Backwash
I'm coming to the end of my second week of working full time. It was a struggle at first and I made optimistic promises to myself to have a proper break at lunchtime (even to try and catch forty winks). Of course I haven't done any such thing but I've managed not to work late...except for last night. It's going well but I have to remind myself that I'm not doing normal duties. It looks like I will finish almost everything before I leave on October 15th. but I have needed every moment. Things do take me longer. But my biggest achievement was to brave high heels and to risk the backwash at the hairdresser. At last, a fabulous head massage and no wet face and soaking sleeves.
I was told by my stroke consultant that the backwash would be okay, at my long awaited out-patients appointment last week. For those of you with an interest, the backwash is no problem for someone with my type of stroke, so it's worth asking.
The outpatients appointment went better than expected, even though I must have seemed intimidating, sitting with an open notebook, pen poised, frowning at him over the top of my glasses. I was given plenty of time and was able to talk through possible causes. It looks like Reversible Cerebral Vasoconstriction Syndrome is worth pursuing. I'll have another scan and a further outpatients appointment in December. Meanwhile the consultant is going to do some homework, as by his own admission, he knows very little about it.
He seemed aware of my concerns about my treatment. I wondered if he had read the blog but didn't dare ask. We settled on blaming Queens Medical Centre. It's always useful to have a third party to blame, it saves everyone getting defensive. It was typical of QMC that there was still no feedback from the scan taken on 4th. August. In their defence, the consultant felt that had there been anything to report (a need for surgery or some other intervention) we would have heard from them. I don't believe that is a good enough reason for taking two months to respond.
We also talked about my dissatisfaction with my discharge and follow up; that I had been left without information and guidance. I always try to bring solutions rather than problems, so for my next outpatients appointment I'll prepare a list of the sort of information I needed, which might form the basis of a leaflet to give to patients (how annoying is that!). I also pointed out that while the Stroke Association website is excellent, it's very thin on information about bleeds. So I got a lot off my chest and went away feeling that I had been heard, even though I might get nominated for 'Irritating Patient of the Year'.
I am happy with my progress. I still have problems with balance and being in crowded, noisy places. My head still hurts at times (although I learned that the brain itself cannot be the source of the pain) and I process information more slowly. But the 'fuzzy head' feeling has gone and even the persistent and common stroke survivors' problem of tiredness is less of a drag than it was. I have been very lucky.
I was told by my stroke consultant that the backwash would be okay, at my long awaited out-patients appointment last week. For those of you with an interest, the backwash is no problem for someone with my type of stroke, so it's worth asking.
The outpatients appointment went better than expected, even though I must have seemed intimidating, sitting with an open notebook, pen poised, frowning at him over the top of my glasses. I was given plenty of time and was able to talk through possible causes. It looks like Reversible Cerebral Vasoconstriction Syndrome is worth pursuing. I'll have another scan and a further outpatients appointment in December. Meanwhile the consultant is going to do some homework, as by his own admission, he knows very little about it.
He seemed aware of my concerns about my treatment. I wondered if he had read the blog but didn't dare ask. We settled on blaming Queens Medical Centre. It's always useful to have a third party to blame, it saves everyone getting defensive. It was typical of QMC that there was still no feedback from the scan taken on 4th. August. In their defence, the consultant felt that had there been anything to report (a need for surgery or some other intervention) we would have heard from them. I don't believe that is a good enough reason for taking two months to respond.
We also talked about my dissatisfaction with my discharge and follow up; that I had been left without information and guidance. I always try to bring solutions rather than problems, so for my next outpatients appointment I'll prepare a list of the sort of information I needed, which might form the basis of a leaflet to give to patients (how annoying is that!). I also pointed out that while the Stroke Association website is excellent, it's very thin on information about bleeds. So I got a lot off my chest and went away feeling that I had been heard, even though I might get nominated for 'Irritating Patient of the Year'.
I am happy with my progress. I still have problems with balance and being in crowded, noisy places. My head still hurts at times (although I learned that the brain itself cannot be the source of the pain) and I process information more slowly. But the 'fuzzy head' feeling has gone and even the persistent and common stroke survivors' problem of tiredness is less of a drag than it was. I have been very lucky.
Thursday, 23 September 2010
Jingle Hell
I saw my first Christmas tree today. It was 24 degrees outside and the customers at the Premier Inn coffee shop were in short-sleeved shirts and cut-offs. Pride of place in the entrance hall was given to a decorated tree, advertising the festive season (only three months to go!).
The charity shops are displaying cards in their windows, the newspapers are full of adverts for Christmas dining and supermarkets are already stocking Christmas biscuits, sweets and snacks, exactly the same as those available in the other aisles but wrapped in red and green with holly, berries and bows. The department stores are helpfully corralling a load of tat into a designated area, marked 'Gifts' where Halloween, Bonfire Night and Christmas vie with each other to empty the customers' wallets.
I am aware of the arguments, which are similar to the 'farmers in Scotland' reasons for not staying on British Summer Time all year. For those of you unfamiliar with this, the debate runs that it would be so dark in Scotland in the morning that the farmers wouldn't be able to feed their animals. So we all have to suffer miserable, dark nights for what feels like most of the year.
The 'Christmas in September' justification says that customers, particularly women, like to plan ahead and have their shopping done, presents wrapped and cards posted by the end of November. Those with families overseas need to get cards and parcels posted even earlier. If customers didn't want to shop early, the Christmas goods wouldn't shift, would they? We all have to 'enjoy' Christmas for three months, so that the super-organised amongst us can feel smug in December.
Well, excuse me but aren't presents available all year? The Post Office runs all year. Food, in ordinary packaging, is available all year. We don't eat the packaging. Trust me, shortbread tastes the same, however it's wrapped. I don't have a simple answer to the cards and wrapping paper dilemma but if it's so important, these could be bought cheaply in the January sales.
Let's reclaim the autumn and fight to hold back the Christmas tide! The way to achieve this is passive resistance. Don't buy anything 'Christmassy' until December. Women, let's join the men and shop on Christmas eve. If the stock doesn't shift the shops will stop displaying it. Be honest, that half-price tin of sweets is always gone by the end of October. And that's the whole point...we then have to buy another.
The charity shops are displaying cards in their windows, the newspapers are full of adverts for Christmas dining and supermarkets are already stocking Christmas biscuits, sweets and snacks, exactly the same as those available in the other aisles but wrapped in red and green with holly, berries and bows. The department stores are helpfully corralling a load of tat into a designated area, marked 'Gifts' where Halloween, Bonfire Night and Christmas vie with each other to empty the customers' wallets.
I am aware of the arguments, which are similar to the 'farmers in Scotland' reasons for not staying on British Summer Time all year. For those of you unfamiliar with this, the debate runs that it would be so dark in Scotland in the morning that the farmers wouldn't be able to feed their animals. So we all have to suffer miserable, dark nights for what feels like most of the year.
The 'Christmas in September' justification says that customers, particularly women, like to plan ahead and have their shopping done, presents wrapped and cards posted by the end of November. Those with families overseas need to get cards and parcels posted even earlier. If customers didn't want to shop early, the Christmas goods wouldn't shift, would they? We all have to 'enjoy' Christmas for three months, so that the super-organised amongst us can feel smug in December.
Well, excuse me but aren't presents available all year? The Post Office runs all year. Food, in ordinary packaging, is available all year. We don't eat the packaging. Trust me, shortbread tastes the same, however it's wrapped. I don't have a simple answer to the cards and wrapping paper dilemma but if it's so important, these could be bought cheaply in the January sales.
Let's reclaim the autumn and fight to hold back the Christmas tide! The way to achieve this is passive resistance. Don't buy anything 'Christmassy' until December. Women, let's join the men and shop on Christmas eve. If the stock doesn't shift the shops will stop displaying it. Be honest, that half-price tin of sweets is always gone by the end of October. And that's the whole point...we then have to buy another.
Sunday, 12 September 2010
Stroke Diary (14): Back to Work
Monday 6th. September:
I once worked alongside a teacher in a small special school for children with learning difficulties. She had recurrent breast cancer but twice had made it back to work. I asked her how she was feeling and she told me that returning to the school had been her target, her goal, the thing that kept her going through the bad times. I couldn't understand this. Her class were exhausting, the school was tatty and the staff didn't seem to be an inspiring bunch. I couldn't imagine anything more desirable than not being at work, being free to choose how to spend each day and not having to face getting up on dark, winter mornings. But then I was a mother of three young children, struggling to balance home and work and not that confident about my success as an educational psychologist. I had no idea how important work can become for the mature woman, once children have left home and competence and confidence in the workplace becomes a mantle of respect and wisdom.
So I was relieved to return to work on an agreed plan of half days and very reduced duties but even then, by lunchtime each day my brain was shouting that it had had enough, it needed to go home and lie down. I didn't achieve a great deal. I managed to clear my e-mails, attend a couple of meetings and give some informal supervision. I couldn't have made any school visits or delivered training, so I am far from fit. My workplace is unique and I am aware that for many stroke patients, a return to work after six weeks would be impossible due to unreasonable demands and pressure from employers. I have been allowed to take my time and through the week I felt myself change from 'sick person' to competent member of a community with a shared purpose. The conversations about how I was feeling dropped away and I was consulted, sometimes apologetically, about real issues. Next week, I'll be more focused and tackle the pile of tasks, already comfortingly tagged with 'to do' post-it notes.
The best thing about this week's recovery is that my head is feeling less thick and fuzzy. Either that or I'm simply getting used to it. I can still get dizzy and my balance isn't good but I think these problems are going to need some kind of programme (Pilates? Tai-Chi?) rather than natural recovery. I had no problem with the three flights of stairs up to my office but after one unsteady moment, I had to be strict with myself about holding onto the bannister (difficult when carrying a mug of coffee AND a piece of cake).
My outpatient's appointment is scheduled for the end of the month. I am supposed to have another CT scan before this but I have had no word. My G.P has been chasing it up and she telephoned to say that the consultant was (roll of drums)...'waiting for QMC'. I wonder if this is code for 'I forgot all about it'.
My next Stroke Diary post will follow this appointment. It marks the start of my quest to find out what happened to me. I am not anticipating any enthusiasm or collaboration in this from the consultant and I am expecting to be told that I have to accept that the stroke was 'just one of those things.' I'm not going to accept this.
I once worked alongside a teacher in a small special school for children with learning difficulties. She had recurrent breast cancer but twice had made it back to work. I asked her how she was feeling and she told me that returning to the school had been her target, her goal, the thing that kept her going through the bad times. I couldn't understand this. Her class were exhausting, the school was tatty and the staff didn't seem to be an inspiring bunch. I couldn't imagine anything more desirable than not being at work, being free to choose how to spend each day and not having to face getting up on dark, winter mornings. But then I was a mother of three young children, struggling to balance home and work and not that confident about my success as an educational psychologist. I had no idea how important work can become for the mature woman, once children have left home and competence and confidence in the workplace becomes a mantle of respect and wisdom.
So I was relieved to return to work on an agreed plan of half days and very reduced duties but even then, by lunchtime each day my brain was shouting that it had had enough, it needed to go home and lie down. I didn't achieve a great deal. I managed to clear my e-mails, attend a couple of meetings and give some informal supervision. I couldn't have made any school visits or delivered training, so I am far from fit. My workplace is unique and I am aware that for many stroke patients, a return to work after six weeks would be impossible due to unreasonable demands and pressure from employers. I have been allowed to take my time and through the week I felt myself change from 'sick person' to competent member of a community with a shared purpose. The conversations about how I was feeling dropped away and I was consulted, sometimes apologetically, about real issues. Next week, I'll be more focused and tackle the pile of tasks, already comfortingly tagged with 'to do' post-it notes.
The best thing about this week's recovery is that my head is feeling less thick and fuzzy. Either that or I'm simply getting used to it. I can still get dizzy and my balance isn't good but I think these problems are going to need some kind of programme (Pilates? Tai-Chi?) rather than natural recovery. I had no problem with the three flights of stairs up to my office but after one unsteady moment, I had to be strict with myself about holding onto the bannister (difficult when carrying a mug of coffee AND a piece of cake).
My outpatient's appointment is scheduled for the end of the month. I am supposed to have another CT scan before this but I have had no word. My G.P has been chasing it up and she telephoned to say that the consultant was (roll of drums)...'waiting for QMC'. I wonder if this is code for 'I forgot all about it'.
My next Stroke Diary post will follow this appointment. It marks the start of my quest to find out what happened to me. I am not anticipating any enthusiasm or collaboration in this from the consultant and I am expecting to be told that I have to accept that the stroke was 'just one of those things.' I'm not going to accept this.
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