The Gamma Knife...

This is something that I first came across when Charlie recommended me to Andy. Naturally, the first thing I did when I was given Andy's name was to Google him and I found out that he was a specialist with the Gamma Knife. I was a little worried and so, naturally, I Googled further. What an incredible invention! Google it yourself! Okay, I was a little worried about how it was fitted and so on, but it sounded fantastic.

Unfortunately, for my kind of tumour, it wasn't suitable. As I've mentioned previously, my tumour isn't a lump, it's a distributed set of cells, like a glop of frogspawn. So I don't get the Gamma Ray treatment.

But you can meet my radiotherapist (Nick), and he can explain all about the gamma knife treatment himself: http://news.bbc.co.uk/1/hi/health/7791315.stm

He's a nice guy - with a very dry sense of humour!

The Mask!

Today was the day when I went to the hospital to get the mask fitted. You need a mask when you're going to get zapped to make sure that your head is in the same position every day.

The mask fitting was quite uneventful, really. It was delayed because of equipment problems (not mine) but eventually I was called in to have it done. The bed you get zapped on is rock solid and your head is positioned in something like a potty. They adjust various bits until you're relatively comfortable (with the emphasis on "relatively"). Let's just say that I'm glad I only have to stay in that position for 25 mins max. Once they're happy with that, they bring in the mask...

...you have your eyes shut so you don't know what to expect. Then you have something which feels like a heavy, warm, damp J-Cloth gently placed over your face. It's not claustrophobic at all - at least I don't think so. It's a very open mesh, like a fishing net, only the cord is thicker and a lot softer. But there is absolutely no problem breathing and so my previous jokes about having to be nice to ensure that you get breathing holes were completely inappropriate. I had to have a CT Scan too which meant that I had to be injected with some contrasting dye (bloody artists) but that didn't hurt really either. So I just lay there for about 20 minutes while the mask set and I slid in and out of the CT scanner. The room has red lasers pointing all over the place. It was like the movie "Entrapment" and these were used to help identify exactly where I was positioned and the dots were then marked on the mask. This ensures that every day, while I'm getting the RT treatment, my head is in the same position.

Anyway, at the end, they lift the mask off your face and it looks so cool! It really looks like a work of art (and that's not me being arrogant here). I have already asked to have it at the end of treatment and they've said I can. It's like a form of my face and neck in wide-form mesh. Seriously, I could see people queueing to get these made. Really.

My zapping begins on the 12th Jan 2009.

New Scientist

I'm a subscriber to New Scientist (a UK science magazine) and have been for many years. Last night I got bored and sent a question to "Last Word" which is, unsurprisingly, the last bit of the magazine where people ask sort-of scientific questions, leaving it open to anybody to offer an answer.

So I sent the question: "How many megabytes do you think the approx 100mm cubed of material removed from my brain during the biopsy represents?"

And then I wondered - could it be terabytes or petabytes - or, as work colleagues suggested, just bytes?

And I thought I was the one with the problem...

So I turn up yesterday after being told that they'd given me the wrong day (i.e. the day before), ready for being "measured up" - whatever that entailed. I meet the very friendly nurse who confirms that my radiotherapy (RT from hereonin) will start on the 20th Dec. WHAT? I ask. Okay, I don't raise my voice, but I still ask. "I said that if it were possible, I'd rather that the RT didn't start until the new year!"

I'm met with a slightly blank face. "No, that's not written down here," she tells me. Luckily, Nick is around (he now knows, and accepts, that I call him Nick). We have a short meeting later, although that still means that I'm hanging around in the hospital for over an hour. So I see Nick and he tells me that he wasn't aware that there'd been an agreement to the RT not being started until 2009 but, reassuringly, says that he considers that to be okay.

So I still haven't been measured up yet. What I haven't mentioned is that this includes a CAT scan which is slightly more claustrophobic than an MRI scan. Plus I have to try out the bed where I get zapped which just makes me think of the "Goldfinger" movie. This basically involves making sure that you're comfy because you're going to be lying there for the next six weeks (not the whole time - just for about 20 minutes a day - but they need to make sure you'll be in exactly the same position.

Maybe the next appointment will be more illuminating...

Sad Santa

I have my appointment sorted for when I get measured up for my mask. I asked whether I had to be clean-shaven, including my eyebrows and the nurse laughed and said that unless I looked like Santa, I didn't have to worry. So let's hope Santa never needs radiotherapy...

Apparently, the way that they create the mask is not using bandages and plaster of Paris (another reason not to use Google) but by using a form of plastic that is thermo-pliable. Which I think means that as long as my face is warm they can form this plastic accordingly. I'll believe it when I see it. I now have in my mind that bit from one of the Star Wars films where Han Solo gets frozen in carbonite...

More info after the appointment.

Juuuust A Minute!

I met my radiotherapy consultant for the first time, whom I shall refer to as Nick. He doesn't know that yet. Anyway, he was an extremely pleasant chap who sounded like he was a contestant in the famous BBC Radio 4 show hosted by Nicholas Parsons. He spoke incredibly quickly but he also had a great sense of humour. For example, he said that I should bring along the CD of my most recent MRI scans (I so want to bring out an album with that title) to the hospital when I start my radiotherapy. I said that I could just do a copy and send it to him. "No," he said, and then to inspire confidence in him to me he added: "I'll only forget it or something..."

Anyway - the good news is that when he looked at my scans he described my tumour as "subtle". I asked him what that meant and he said that it confirmed it was low-grade. Which was nice.

He also intimated that the radio-therapy was less of a pain than I thought. Yes, it's still 30 working days, yes I may get nausea, hair-loss and tiredness as side-effects and yes it is an hour long per session, roughly. But the actual time that you're being zapped is more like 20 minutes. The rest of the time is all the messing about, waiting around, and so on. He seemed to think the whole thing was a doddle. But then, of course, he's not the one being zapped...

But, as with Andy, they all seem to be quite laid back about the whole thing and I don't think that's just because it's not them it's happening to. So I have my fingers tightly crossed that there'll be nothing more in this blog 'til 2009!

How much is your brain?

I'm very fortunate in many ways and one of them is that my job includes private health care. This has been very beneficial. It can also be quite enlightening at times. For example, today I received the latest notification of health expenses they have paid out on. For obvious reasons, everyone and everywhere shall remain anonymous but it's quite interesting reading the figures.

For example - my one nighter in the room was £1,300 (and no double-entendres are intended there). Plus £118 for physiotherapy. I'm not quite sure what that entailed... I certainly don't remember anything (ditto, re: double-entendres).

Then there was a bit less than a grand charged for "Pathology" which I assume is looking at what had been sucked out of my brain. Now - when you consider that they also charged just over 500 quid for a preliminary MRI scan and that the op itself cost just under 3 grand, that seems quite a low charge.

Like it's more expensive to give me a room with breakfast and a copy of The Times (which I didn't ask for) than it is to have highly trained specialists examine these especially important cyto-cells that were removed and announce that I'm okay! Relatively.

Ho hum. More news on Thurs, no doubt.

A little more understanding

Sometimes I think I should surgically remove Google from my system so I don't look things up. Actually, no, that's what my wife thinks. I prefer to at least know what questions to ask. Anyway, after that letter last week and all the nasty-sounding things in it I emailed Andy to ask whether it was as bad as it sounds. Well, the good news is that it's not as bad. A low-grade glioma tends to distribute itself a lot through healthy cells, which means that it is very dangerous/difficult to attempt to remove surgically, but while it remains low-grade, this is not a big problem. And this is why radiotherapy is the best treatment.

I feel better now I understand this!

More info than I want?

Today I got a copy of the letter that Andy's sent to the Radiotherapist with regards to my radiotherapy. It has a number of words/phrases in it that I'm not greatly comfortable with. Apparently my tumour "now involves a large part of the limbic system on the right side and also the basal left frontal lobe." So - I think that means that I shall be talking more bollocks than usual and won't remember it. The biopsy has "demonstrated that I have an infiltrating grade 2 Astrocytoma". I don't think that's as bad as it sounds from the Googling that I've done, but it still sounds quite intimidating I think.

Grade 2 is at the better end of the spectrum...

Clear to continue

So I had my meeting with Andy on Tuesday to get the results of the biopsy. As you can imagine, I really was getting quite nervous about all this. But I got good news when I saw him. Okay, I still have a tumour and I still need to have radiotherapy, but generally there were no nasty surprises. It's still a low-grade glioma, which is good.

I asked Andy if the radiotherapy could wait until the new year so that it didn't spoil Christmas and he didn't have a problem with that. So I'll be having it in January at some point. The fact that he didn't feel any urgency was very comforting. Obviously, I'd rather not have the radiotherapy at all, but that's not an option.

So I'm waiting for an appointment with a radiotherapy specialist and then I've got to get a mask made. That should be interesting and will give me something to write about.

Generally, though, I'm feeling fine, if a little tired at times. I think the strangest thing is that I've lost all interest in eating. I have to force myself to eat stuff. I don't mean that physically, but it's like I'm completely bored with eating. It's not causing me nausea and I'm not showing symptoms of bulimia or anorexia, I just can't be bothered to eat. But I do eat and I'm still a healthy weight. Andy thought this was an interesting symptom but had no recommendations except for me to ensure that I'm still eating healthily.

Reality

I must admit that I don't feel totally in reality just yet. I've been in contact with Andy where I asked him roughly how much brain was sucked out when I had my biopsy. His reply was that he'd taken three core samples of 1mm diameter by 10mm depth. Which works out at just under 100 cubic millimetres, I think. I wonder what was in there? I haven't noticed anything missing in my memory, but then, how would I? I wonder how much, in terms of megabytes, that amount of memory reduction works out at. I also wonder what was in there. I just hope they can't read the contents...

I see Andy on Tuesday to get feedback from the results of the biopsy and, as you can imagine, I've not been very good at relaxing in the interim. I'm just hoping that I can postpone the radiotherapy until 2009.

October 10th (Fri)

I've slept much better than I expected over the last few days since I got home. I've had to sleep on the wrong side (i.e. on my left) so that I haven't been sleeping on the scar and the masking tape or whatever has been used to protect the wound. My sleep has involved quite amusing dreams where I've been planning all sorts of events and I've generally woken at about 5:30am. Today I went to my GP where I had the sutures removed. It was relatively painless. As you can see from the picture, the scar is fairly unimpressive. I was a little disappointed as I was hoping to have a large area of my scalp shaved, as I've always looked for an excuse to have a sort-of punk cut.

I see Andy on the 21st for the results of the biopsy. I can only cross my fingers about that.

The company I work for have continued to be unbelievably supportive. When you get personal recommendations about what you're doing sent out to the whole group (and this isn't a small company) from the CEO you can't help but feel pleased. I just hope he's truly understanding how much I appreciate what he's doing.

There are nice people in this world.

Biopsy

October 6th
Arrived at the hospital 20 minutes late. Not that it mattered. I was checked in, like at a hotel and was taken to my room, where I was then left to wait around for an hour or so before anybody came to talk to me about the biopsy. I'm covered by BUPA and so it's a private hospital and a private room. Quite posh it is too.It's in Central London and it even has a balcony. It's a shame the weather's rubbish; it would have been nice to sit outside.

Anyway, I get visited by one of the nurses at about 11:00am and fill in various forms etc and get told that the prep for the op will be at about 6pm. I also go for another MRI scan at 3ish where they stick these circular markers on my forehead and temples. These are opaque to the scanner and are used to create a 3D image of the brain to help Andy aim the drill etc so that he can get the brain samples he wants. After the scans are completed I'm given a CD with the scan images on to give to Andy.

I get visited by Andy at about 5 and we talk through exactly what he's going to do. Then he goes and I get changed into the op gown and slippers and get taken down to the operating theatre on a hospital bed. I meet the anaesthetist who then slides a needle into the top of my left hand. I hardly feel it. And that's the last thing I remember until I come to at about 9pm in the High Dependency Unit. The op's been completed, apparently. They check me for my reactions and grip strength, all of which seem to be fine. I've been catheterised too. Anyway, I'm left in the HDU all night and sleep is not easy. People are wheeled in and out; nurses and doctors are disucssing cases; lights go on and off; there are the inevitable machines that go “ping” and every so often, I'm woken up (if, indeed, I was asleep in the first place) by a nurse calling my name, apologising, then doing tests on me again like shining a torch in my eyes to check that my pupils contract.

Tues 7^th October

Although I've put this as a separate date, yesterday and this day are actually a sort-of blur. In the HDU I think I saw virtually every 20 minutes on the clock and occasionally drifiting off for short time and I'm still here

But the biopsy's been done and apart from a bit of jaw and earache (they have to move some of your jaw muscle out of the way before they drill in), I'm fine. I see Andy and we discuss things and I'll be seeing him again in a couple of weeks to discuss the results and at the end of this week I go to my local GP to get the staples removed from the incision. All very straightforward. I had been anticipating more hair being shaved from my head before the op but there's been very little It just looks like I've got a bit of masking tape on my right temple...

My only problem at the moment is that I can't sleep on my right hand side because that's where the stitches are. Or staples, rather.

Fashion Statement

Well, tomorrow (Monday) is biopsy day and I'm a little nervous. Who wouldn't be? I've told people that I'm getting my brain pierced and I'm not sure whether to get a ring or a stud. I think I've told the same people the same joke more than once. I can get away with that at the moment. I think.

I asked the Neuro why they were doing a biopsy when the MRIs show that the tumour is spreading and that they will be doing radiotherapy. He said that it was just to get a clearer idea of what the glioma is. My wife asked what it would mean if the results of the biopsy were negative. Andy replied that that would mean that they missed. I like Andy's sense of humour...

Someone has suggested that, as part of this op, I should ask for a USB port to be fitted. I said that I'd prefer Bluetooth. The phrase "I know Kung-Fu" sprung to mind too.

Seizure -29th September 2008

Not sure why this one happened...

I was sitting in the office in the early hours of the afternoon, typing away at the keyboard when I suddenly detect the aura of a seizure. I'm not sure if it's passing on not so I start concentrating on it and trying to keep the effects under control (Steady deep breathing and so on). One of my colleagues notices me and asks if I'm alright. I tell him I'm not sure and then I tell him I can feel an aura/seizure coming, and I sit down on the floor. They say they're going to call for an ambulance and I say I'll be fine, I just want to ride it through. I can feel it getting worse but I still don't want to give in. Then the paramedics turn up and assist me to the ambulance. They won't let me walk on my own. I don't remember much after this; I was brought into the hospital and put on a wheelchair. my colleagues fussed around me a little and I just sat there. I don't know whether I was drooling, shaking, talking bollocks or whatever.

The next thing I recall is when I'm assisted onto a hospital bed and have electrode attached to various parts of my body, and a couple of cannula inserted into my arms.

Anyway it's the following day now; I left the hospital at just before 5. Now I'm just very tired and only a little bit hungry.

The Black and Decker beckons...

My biopsy is in 2 weeks time. I'm a little apprehensive but who wouldn't be?

If there are no posts after this one, you'll know that they screwed up the op!

500 Days

Today I decided to review my blog and noted the date that I'd had my first seizure. Then, for whatever reason, I found a website where you could calculate the actual number of days between two dates. So I typed in the date of my first seizure and today's (yesterday's) date. Strangely, it was exactly 500 days! How bizarre is that?

I'm now going to look at when the various seizures occurred to see if there is a pattern of some kind. There probably isn't, but wouldn't it fuck the neuro's mind up if I found that the pattern of my seizures fitted the Fibonacci series or something?

I've had some feedback from some of my colleagues after I had the seizure at work. They're quite amusing.

I'm not sure quite what time it was after lunch but I started getting an aura. I'm sure I've mentioned this before, but an aura is where you get warning signs that a seizure is going to begin soon. It's difficult to describe. One symptom is that you feel like you really have to concentrate on what you're doing. You also get a general feeling of anxiety. The funniest one is that, after the first one, you start to recognise what's coming along and you think "Bollocks - I am not going to let this happen." And so you try very hard to control your breathing and concentrate on things and so on. It's a losing battle but it does have advantages. For example, I was apparently able to tell my colleagues what drugs I'm on, who my GP is, what my contact numbers are, how they should treat me, and so on. I love this paradox - apparently, if I hadn't been there, they wouldn't have known what to do with me!

So - back at the office. I can feel an aura coming on and I tell one of my colleagues who doesn't know what I mean. I go and sit on the floor, against a wall and try to control what's coming on. That's the end of my memory. Apparently I start telling people what to do, who to contact, what drugs I'm on and so on. When the paramedic arrives I tell him that I'm actually okay and I just need to weather this out but he disagrees and an ambulance arrives shortly afterwards. They tell me that they'll go and get a chair for me and I tell them that I'm perfectly okay to walk. Which I do. So, I get in the Ambulance and we're taken to St Mary's where I'm cannullaed (sp?) and so on.

Apparently I have three seizures. I wake up to find I've got an oxygen mask on. I have no glasses and therefore can't read. I'm bored stiff. I have two days of this...

The hospital staff were very, very nice people.

Awww

Aren't people nice? I went into the office the day after the news (13/8) and obviously had to tell a few people. I tried not to turn it into a pity-party but still got a little hug from a coworker (female). I explained that it is an open verdict at the moment, although the biopsy is near-enough a dead-cert and the radiotherapy is almost so.

I have to say that my company has been extremly supportive. More than they need to be, as far as I can tell. It helps.

The biopsy consists of me turning up at hospital, being given a general anaesthetic, having a hole drilled in the right side of my head, near my temple, and then some brain cells removed. I leave hospital the next day. Then they look at the cells and try and decide exactly what sort of naughty cells I have.

The radiotherapy consists of turning up at hospital every weekday for 6 weeks and getting zapped with x-rays for an hour. It's apparently painless. But they have to make a cool mask first so you get to have one made like they do in the movies which starts with your face being covered with wet bandages soaked in plaster of Paris or something. At least that's what I've read. I'll find out more when I see the Neurosurgeon next time.

I hope I get to keep the mask afterwards. It could be useful if I'm ever invited to an "Eyes Wide Shut" party...

Open your mind...

12/08/08 - Well that's what they want to do. I had another MRI scan today and the glioma's grown again. That may explain that seizure a couple of weeks or so ago. Anyway, now the neurosurgeon wants to do a biopsy and almost certainly also wants to start radiotherapy. As you can imagine, this has not made me the happiest bunny in the world, for a number of reasons.

Firstly, you only get one shot at radiotherapy (that doesn't mean only one "zap", as it were, but that you can only use radiotherapy as a treatment once). So if it's too early - tough. It'll clear up what it can, but that doesn't mean it gets rid of everything. And so it just reduces rather than kills off the effect of the tumour. Secondly, you still have to go through all the awfulness of Radiotherapy.

The tumour is not a lump - it's a distributed 'cloud' of cancerous cells - and so it can't just be plucked out. The biopsy will just, hopefully, identify what sort of cells these are, and this may change the medication I'm taking.

Nearly a holiday spoiler

I'm in the office in Mayfair on the 21st July and it's mid-afternoon. The office is always quite stuffy and airless. I start detecting the start of an aura and that's not good. I try to ride it but this time it won't go away and I realise that I have to warn the others in the office. I tell them that I think I'm going to have a seizure and then I sit down on the ground and try and breath rythmically and slowly but it's beating me. Some of the others in the office come over to try and comfort me and one holds my upper arms gently, trying to get me to relax. I can't, and I feel like I'm overheating with people surrounding me. I don't remember a lot of the rest of this but I apparently started giving out instructions (not quite orders), which included soaking me in cold water to cool me down. Someone says that they should call for an ambulance and I say that there's no need, but they call one anyway.

There is more to this story, but most of it is not in my memory. More as it comes...

Insurance and the Lottery

I'm going on holiday next month to Turkey and being the responsible person that I am, I've taken out travel insurance. Only when you have a brain tumour/epilepsy it's not as easy as it should be. A number of insurance companies just laugh and turn you down. Okay - they don't actually laugh but you know what I mean. So I look on the National Epilepsy Society website http://www.epilepsynse.org.uk/PAGES/info/leaflets/travelinsurance.cfm and try some of the insurance companies they suggest. One or two (no names) say that unfortunately, on their points system, they're unable to cover me. I end up getting insurance that covers the family but excludes cover for me for anything to do with my condition. Apart from that, the cover comes to £30. Bargain.

So I think - well, that's that. The chances of me having anything worse than a seizure are extremely low and our UK health insurance covers any costs if I have to be hospitalised, so that's that.

Only my wife won't have it. She wants me to be fully covered. "What if I have to be repatriated?" She asks. "What if you die?" Well, I won't go into the discussion that went on except to say that the odds of that happening were extremely low. I checked and found that the insurance premium just for me is £240. Yes, £240. I said that given the comparative odds, I'd rather buy 240 lottery tickets.

I lost the argument.

240 quid! How much beer is that?

Don't panic!

On Monday lunchtime this week (12th May) I get a call from my Neurosurgeon saying that he'd seen some anomaly on my MRI scan and that he'd like to see me sooner rather than later. In fact, could he see me on Tuesday (the following day)? I didn't feel like I could actually say no. So I had an appointment on Tue in the afternoon. With my seizures becoming more frequent, I wasn't sure what he was going to say. He emailed me to confirm the appointment and signed off as "Andy". I had to reply and started off "Hi Andy" and then said that it felt a bit wrong calling him "Andy" when he was a neurosurgeon. In other words, I felt that I should address him as "Mr." but he said "Well, I call you Alan so why shouldn't you call me Andy?"

Since then I've found that my neurologist is called "Charlie".

So my brain surgeon and my nerve specialist are called Andy and Charlie. I think that's brilliant!

Anyway, there was nothing too awful to report from Andy. Just a slight change in the tumour. However, I'm back to scans every 3 months rather than every six.

I'll just have to see how my migration to Keppra goes...

Another seizure? No thanks, I've already had one...

For the first time I had a seizure on London Transport. It was on the Central Line, just as it was arriving at Mile End station. I could feel it coming on and just before we arrived there I took one of my Clobozam but it was too late. I spoke to the guy next to me and said "I'm going to have a seizure and he replied "I don't speak English". Then I spoke to the woman on the other side and told her the same thing. Then, being a nice commuter, and knowing how much it annoys me which someone is taken ill on a train and the rest of us are stuck in tunnels for ages, I dutifully forced my way through the crush and onto the platform. I heard someone say "Shall I pull the emergency lever" and I managed to say "No". then I got onto the platform and so did some nice woman who helped me over to the steps where I sat down. She kept telling me to breathe deeply and kept asking me my name. After that, my mind is blank until I find myself in hospital (Royal Hospital, Whitechapel), being helped onto a hospital bed. I'm aching all over.

After that, they go through the normal motions, checking my details, checking that I know them, then doing the usual neurological tests (eyes following a pencil, testing reflexes, and so on. Then I'm moved to a main ward where I have to have a cannula inserted (one of those things they stick in the back of your or in your forearm, which has a plastic exterior). It's to allow them to inject fluids without constantly sticking needles into you. It's bloody painful, I can tell you.

Anyway, to cut a long story short, I'm kept in there until about 11:30pm, and then released.

I'm worried that my seizures are getting closer together, as is my neurologist. Funnily enough, he practices at this hospital as well as the hospital I see him at! What's more, the hospital registrar I spoke had trained under my neurosurgeon! Small world, eh?

New drug

Well, I'm being moved onto a new drug. It's called Keppra. I'm going to be weaned off Lamotrigine at the same time as being switching to the new one. Basically I'm going to start at 250mg twice a day, moving up to 1500mg twice a day! God knows how many pills that will involve...

Reading the side effects is never a good thing to do. But I did. I'm sure that there's nothing there that one couldn't suffer from by having hay-fever medicine or something. The biggest problem however is that my seizures are seemingly random and so I can't really tell what is the cause or what is effective at stopping the seizures. It's like the old joke about the guy selling an anti-elephant machine in England. Someone asks him how he can tell if it works. The guy replies "Well, have you seen any elephants recently?

Anyway, the neurologist seems to be worried enough to write to my doctor. I also had my MRI scan today and I have my copy of the results on CD, but I won't have any feedback until next week some time. Unless it's urgent. So I hope I won't be hearing anything until next week...

Welcome back MRI

The neurologist is a little worried that I've had as many seizures as I've had over a relatively short period. So he's looking to migrate me to a different drug and also to get me to have another MRI scan. This time, however, it'll be at the hospital where I have headphones so I won't have the embarrassment of the radiographers hearing my sweary choice of music.

He seems quite cool about the whole thing as if it's just an irritation to me rather than some life-threatening problem, but I think he's just intrigued as to why I'm still having the seizures.

Hopefully he'll find some reason.

A fishy time?

I only make entries here if I'd had a seizure or a mini-seizure or some interesting medical discovery to add and this time is no difference.

Yesterday (11/4) I had another seizure, this time in The London Aquarium. Luckily, it was quite near the exit so it was easy(ish) for the ambulance to get to me. I realised one was coming and so I had some Clobozam (a drug that tries to calm down seizures) but it wasn't sufficient. To begin with, I sat on the floor, feeling the seizure build up and looking at people walking by and giving me funny looks. After that, I have no memory of what happened until I got to hospital (St. Thomas') but apparently I was stretchered and wheeled out as it was not possible to get me to stand up. In the ambulance I was given diezepam and the next thing I know, I'm being helped into a hospital bed. The night before, I sat on an office chair which broke beneath me (it was not to my weight) and landed on my coccyx and that was painful, and so getting myself into bed was also not very comfortable. Then my memory was blank again and when I came to the next time I had a raging headache and a cannula in my left arm. Then I had all the various checks - an ECG, arm and leg strength, reflex tests, tests to make sure my eyes were able to follow finger movements, etc. And that was it and we were free to go. The tube journey was fine and even though it was a Friday evening around rush hour, we all managed to get a seat. I went to bed early and then an hour later I could feel another seizure starting up. I had another Clobozam, laid down again and rode it through. Luckily, this one didn't carry on to a full seizure.

Anyway - my "allowed to drive" clock has been reset once again...

And the next one, perlease

This was a very minor precursor, but you never know whether it's going to remain like that or whether it's going to turn into something more severe. It's extremely difficult to nail down what causes all this; there does not seem to be any specific events or whatever that one could attribute to this happening. I just get certain signals, and then I panic. This is when I ask for the Clobazam and hope for the best. Most of the time it seems to work.

So - this time it seemed to work and, apart from feeling a bit drowsy, I was able to carry on my day normally. But it all is a problem. At least this one doesn't count as a seizure.

Another day, another seizure

I woke up this morning (14/3) at 6:15 when the alarm went off for the first time (we have it go off at 6:15 and then at 6:45 (don't ask). Any way, I wake up with a start at about 6:30 and begin to get the early precursor signs of a seizure. However it feels like it's only going to be a minor. Anyway I take a Clobazam (something that's supposed to dampen down the intensity of the seizure) but the symptoms get worse and I start to spasm and make weird noises and then pass out. Luckily I didn't wet myself or bite my tongue and at least I was in bed and my wife was there to look after me. I came to at around 8:30 but then slept on and off until about 10:00 (Clobazam makes you drowzy).

My neurologist was very surprised when I spoke to him about the previous seizure and upped my Lamotrigine dosage to 400mg per day, which is high. I hope it doesn't have to go up any higher.

So - my driving licence is put back once more. I'm beginning to wonder whether I'll ever get to drive again.

Once more unto the bed...

This Saturday just gone (the 23rd Feb), I had been out for a walk in the morning and then we went in separate directions to get different things.I arrived home first, unloaded what I'd bought (which included a certain amount of beer), and went to do a few things on the computer. I sat there for a few minutes and then felt the feeling that I've felt before pre-seizure, which included pins and needles and a difficult to describe buzzing (although without the sound) in my head. I swore to myself and got up and headed straight to bed, although I sat up while I tried to establish whether this was going to be a seizure or not. I could feel it getting stronger so I took one of the new tablets that had been prescribed by the neurologist (Clobozam 10mg) then tried to operate my mobile to tell my wife what was happening. The phoone was on lock and required a security number to release it. I think I managed to do that. Then I tried calling her and I failed at the first attempt and at the second attempt apparently all I managed to do was make some weird noises and that was that.

As always, the rest is blank for me until I started to come to, luckily this time in my own bed, instead of in some hospital somewhere. I was extremely groggy and achy but at least I hadn't bitten my tongue, or overheated. I spend most of the day sleeping and also went to bed quite early too that evening. I think the Clobozam may have had something to do with that too. By Sunday I had pretty much recovered, although I still felt drowsy. But I think that's it for this time.

More good news

I saw my neurologist on Wednesday to discuss my condition. Although he was a little concerned about the "mini" seizures that I occasionally had, he was generally pleased with my condition and, like the neurosurgeon, has said that I need only see him every six months, unless something untoward happens. I have to up my dose of Lamotrigine to 400mg a day and he has also recommended that my doctor prescribe me some sort-of pill (I forgot to note the name down) which is a sort-of instant post-seizure relaxant or something. Basically he said that if I took one of these after a mini-seizure it would be highly unlikely that I would have a major seizure after that. Hopefully I will have neither, but it's nice to know that there's something that might prevent the latter.

No news on the suspected melanoma, although one or two people think that the doctor may be over-reacting. I have an appointment on the 25th to see a dermatologist. I'll see what happens then.

The good news and the bad news...

First, as they say, the good news. I had another MRI scan last week (7th Feb) and the neurosurgeon told me that the tumour hadn't grown any more. Even better, he said that he felt that I would only need to see him every six months, rather than every three like I have been doing at the moment. I'll be seeing the neurologist on Wed (13th - nice) just to check things with him, but all sounds positive along those lines.

Now the bad news. It appears that I may have a melanoma on my chest. To begin with I thought it was just a rash of some sort because I kept scratching an itch, but it turns out to be something else. I saw the doctor today who has requested a fairly urgent appointment with the hospital for a biopsy or whatever. Apparently it's a bit large, looks a bit like a mole and shouldn't appear on somebody my age. Deep joy. Apparently I'll be getting examined some time in the next month...

Driving licence reset once more

And so - 9th Jan 2008 I wake up to a seizure. One that is strong enough to knock me out a little, but not enough to require medical attention. My wife phones work to tell them that I've had a seizure and won't be in that day. Throughout the day I spend most of the time sleeping and then try to get up and wander around in the early afternoon. Bad move. I get very nauseous and end up puking up in a bucket. Several times. Then I don't recall what happened next. Apparently I went into a more serious seizure. My wife called NHS Direct (a UK government-run phone in medical advisory service), who asked her to do some tests - like saying my name and seeing if I responded to it. I didn't. They sent an ambulance.


I have vague recollections for a short period after that. They turned up and I had a couple more retching fits. Then they said that they were going to take me to hospital. I think I told them that this wasn't necessary. They told me that they were taking me one way or another and that I should sit in the wheelchair they had. Eventually I did and then I was strapped in (I think) and... well, I assume I was wheeled into the ambulance and taken to the hospital. I have no recollection of the following: my wife followed the ambulance in our car and came into the hospital with me. I first went to A&E and then was taken to Intensive Care (I think). I was overheating and they had to cut my clothes off me to reduce my temperature. They then inserted cannula connected to saline drips to restore my fluid levels, and also electrodes to monitor my cardio side of things. My wife left and I slept. I think they must have injected some sort of sleeping drug too. I woke up at something like 2am without a clue where I was and probably not completely compos mentis either. I flickered in and out of sleep for the rest of the morning. I was given breakfast and cups of tea. I had bitten my tongue during my seizures which made eating anything a little uncomfortable.


I had nothing to read and also had no money as my wife had been told to take all my valuables with her. So I spent most of the morning and early afternoon staring out into space, something I'm not very good at. Eventually I was picked up by my wife and driven home.


Because of these seizures, my driving licence is once again a whole year away. That is so infuriating, even if it's understandable.