Welcome to the fourth instalment of my blog - and thank you for taking the time to drop by and have a look. This one is a tough one to write for reasons which will become obvious - I need your love, friendship, prayers and support more than ever right now. Well, when I say "I", I mean "we". It's been very tough on L and E this week, as you will read.
On Tuesday I went to WRI for my EEG. The technician was lovely and it turns out that she occasionally did spinal cord monitoring when I was in theatres with AGT correcting various spinal deformities. For those of you that don't know, the idea of cord monitoring is to send electrical impulses from one end of the spinal cord to the other - the idea being that missing or abnormal readings may indicate that the spinal cord is being compromised by the straightening of the spine itself. Much less upsetting for all concerned than partially waking the patient (usually quite young) and asking them to wiggle their toes halfway through a major procedure. We had a bit of a laugh about how monitoring failure was always her fault rather than AGT's for cutting through an electrode... Bit like that well known phenomenon of the anaesthetic bleed - always because the blood pressure is too high and never as a result of a surgeon making a hole where a hole should not be. According to surgeons anyway!!! She warned me that the strobe lights may induce a seizure. They didn't but the nystagmus I've had for 49 years stopped while the lights flashed! Normal? Me? Perish the thought!! Some epileptics get an "aura" before a seizure and this is often a smell of food - particularly frying onions or toast. I smelled toast very strongly. Turns out that the EEG room is right next to the staff kitchen - not an aura but actually toast. Sometimes things ARE what they seem. To ensure that the electrodes record properly, they are stuck (through the hair) to one's scalp using highly saline hair wax/gel. This is "easy to wash out" but "may take a couple of washes". Now for the science bit and NOT simply because you're worth it. The gel/wax is indeed water soluble, It was raining quite hard when L and I left the warm and dry environment of WRI which means, dear reader, that I can reveal that this product could very well be called "Foaming Gel". I got to the car looking like a pint of Guinness.....Cue for another song perhaps - "Gonna wash that gel right out of my hair". Oh, and in combination with Body Shop shower gel, it seems that it can turn grey hair to a fetching pale green...... ("Gonna make my grey hair green" perhaps??)
On Wednesday I had a real treat. I went to work with L and got to listen to the orchestra rehearsing a brand new violin concerto and Beethoven's 3rd piano concerto. Lovely. While sitting in the auditorium though, I felt a bit odd and could see that L was looking at me with some concern from her place in the (fabulous) orchestra. I realised that I was lip smacking and zoning out so - after thieving some of the band's coffee - I came home a bit early and had a kip followed by a nice 5k run.
Thursday was filled with fun! Adam, from the UK southern head office came to see me. It was great to see him and catch up and he told me that they had all contributed to a “little something” for me. Well, I am speechless (a rare occurrence)!!!! What a great set of gifts – I love them. A steam train jigsaw, a combination stool and tool bag so that I can sit comfortably while weeding the garden or allotment and a wooden crate (pale green) with "SNIGEL'S ALLOTMENT" stencilled on the side. I have looked at the jigsaw and plan to start it this week (I’m not an anorak. I don’t recognise the station, the loco or any of the train crew…) and yesterday I used the stool while potting on my courgette and pumpkin seedlings! As soon as I harvest anything at the allotment I will be using the crate. Said crate fits my bike trailer - which arrived earlier in the week and was assembled with a tiny bit of demotic Anglo Saxon - perfectly. Adam and I laughed a lot and ripped the business world to shreds between us whilst reminiscing about the good old days - which was very nice in many ways but especially as I was once (briefly) Adam's boss!!!
Which - via a few absences, episodes and zonings out, some nice runs, lots of visitors and a good many laughs amidst the sheer fright of it all brings me to Friday 11th May. Duke, my old springer spaniel, would have been 36 if he'd lived - and if he HAD done so I have no doubt that he would still have thought he was a puppy. I do find it hard to believe that I'm not in my mid twenties still with an endless vista of optimistic years ahead of me. However..... and sometimes, as now, there really is a limit to my ability to keep looking on the bright side and finding silver linings.
We were due to see Dr B in the MAU clinic at 12 and were there in plenty of time. At 12, he came out of the room and said "I'll be back in a few minutes". "Charming", thought I. "Here's me waiting to find out what's going on and he's decided to do something more important". Anyway, around 10 minutes later he was back and we went into the room with him. On the screen was an image of a brain (axial MRI for any anoraks reading this) and L said "is that N's brain?" "yes". "Oh s**t," we said "that doesn't look too good does it?". "I'm afraid not"...
I have multiple abnormal structures in the frontal lobe of my brain. There were a number of bright white blobs or hot spots that really shouldn't have been there, 10 or so of them and distributed across the right and left sides of this bit of my brain - probably around the size of a piece of risotto rice each. There is GOOD news - they are highly unlikely to be malignant. In the 10 or so minutes that Dr B was away, he was consulting with the neurology consultant, under whose care I now am. This is what we have been told and what we now have to try to manage:- I do have epilepsy but it's a symptom of a disease rather than a stand-alone diagnosis. . The next step is to find out what these structures are and if they are treatable. My positivity is not high right now - at least until the diagnosis and the future are clear - apparently there are around 300 things it could be but the most likely are Multiple Sclerosis, Cerebral Vasculitis, Tuberous Sclerosis, Occlusion secondary to detached carotid atheroma debris or vascular dementia. Whichever way you look at it it seems pretty bloody bleak . I have been started on an anti convulsant drug – Keppra (Levetiracetam) 250mg BD rising to 500mg BD in two week’s time. These have a list of side effects that looks like War and Peace but the one I have noticed is a kind of blissful languor! Quite nice really....
We have decided that these things are either lodgers in the loft, (lunatic) asylum seekers or hyper reactive transposition centres (only found in horn and trumpet players - maybe exacerbated by B flat basso...). At any rate they are very definitely "Trash in the Attic" and I am praying that David Dickenson doesn't decide to see if they have a value.
The silver lining is proving elusive this week although I am confident that it will eventually be there. As I have said, we don't know what the abnormalities actually are or exactly how long I've had them - just that they are there. The neurology team are taking me on "urgently" - we hope that that will mean some sort of resolution within the next week or so. I promise to keep you all posted for as long as I can!! If I start writing drivel (more so than usual) please do let me know.....
Signing off for now - see you next week
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