Stroke Diary (17): Signing Off

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.

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.

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.