Stories from a sad ant

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2009-09-19T12:39:00.002+01:00

It would appear that my narcolepsy has no simple solution. Although the symptom can occur after radiotherapy it usually happens much sooner. Nobody has an answer to hand. The drug I mentioned in a previous post is probably not an option because, as Charles pointed out, it can be responsible for seizures itself, which is obviously something I do not want to happen. It may also not be freely available for prescription. This is what my doctor told me when she phoned me yesterday evening. Apparently you need a special licence or something to be able to prescribe this. It's all rather a shame, really, as it did seem to offer all the solutions I was looking for.

The other option that's being considered is some form of sleep treatment. That perhaps my breathing during sleep time is not going on properly. So I may be referred to a sleep specialist! Well, I've not seen one of those before and I don't know what it'll involve. I've got my jury duty in 3 weeks so I hope the two fit together properly!

Speed is the word, is the word...

2009-09-17T21:30:00.002+01:00

My narcolepsy seems to be getting more frequent. The trouble is that as it starts to kick in, I start to feel a pleasant relaxing wave wander along my body.The attacks themselves vary slightly. Sometimes I can feel it hovering around me and it just takes over, and other times I can just relax and allow it to take over. But in the latter case I know I should take more control. But it's very difficult.

Drug Seekers

2009-09-14T19:59:00.003+01:00

My sleep problems do not seem to be improving. For example, even when I think I've had sufficient sleep overnight I'm still having sleep attacks when I'm sitting in the office. Previously I could almost say that the sleepiness occurred in the afternoon and while this wasn't quite right, it was also quite common amongst people generally.

But now my falling asleep syndrome has started in the morning. I will come into the office feeling wide awake and fine and then an hour or so later I start nodding off in front of my screen. I went to the doctor today but she didn't have any helpful solutions. Admittedly, she was a locum and so didn't know my past but even when I tried to bring her up to date there was only so much I could do.

Anyway - we had no solution. She basically suggested that I should wait until I see my neuro (Andy) in late November, when I have my next MRI scan. But that's no good for me. So I've started some searching and I think I've come across a drug that may be the solution. I won't name it yet, but if I manage to get prescribed some, and it does what the various write-ups about it claim, I shall be a very happy person and I will spread the news. In the meantime, fingers crossed.

Tired?

2009-08-30T07:57:00.003+01:00

Although you shouldn't notice this, I may fall asleep in the middle of this post. Please excuse me; it's nothing personal. It just seems to be a side effect that has started kicking in and becoming more noticeable. Although I think the term "narcolepsy" sounds a little too serious for how I am affected, I seem to share a number of symptoms. My sleep pattern is certainly up in the air at the moment. I've been awake, on and off, since 2:45am today, for example, which is certainly not my usual sleeping pattern. Similarly, I have found myself drifting off to sleep in the afternoons, sometimes while sitting at my desk in the office! It happens completely accidentally and when I do sleep, I'm still sitting up; I don't flop over my PC or anything - my back stays straight. It happens completely beyond my control and luckily I don't start snoring!

I'm seeing my neuro soon, so I shall discuss this with him. Apart from that, I feel great!

Have I told you this before?

2009-08-11T20:54:00.002+01:00

Yes, the title is deliberately ironic. Hopefully you will have noticed that my blog postings have generally been very positive and I don't whinge very often. Tonight I am going to whinge, so feel free to skip this post and wait for the next dynamic and exciting... no, I'm not fooling anyone, am I? Well, okay, the next honest and truthful story of my experiences.

But back to what the title of this posting refers to: Short-term memory problems. My memory never was particularly good, but it's noticeably worse. I am trying to counter it by writing things down more, or to confirm whatever someone may have said in email, but it's not a perfect way of remembering things. For a start, trying to recall whether you wrote something down or not can be a challenge - and then where you wrote it down is a complete puzzle. I know. I've been there.

The trouble is, not everyone understands your problem. Not all of them are malicious about this, but some just cannot relate to the problem. I have found that some people seem to think (subconsciously) that you have deliberately forgotten information they have given you, or that you're just plain stupid. I would love to point out to them that it would make my life a lot more comfortable and happier if I could remember everything. That I am jealous for their recalling abilities.

Now I have a lot more fun. I have a digital voice recorder (a 'dictaphone') which I pull out at meetings, explaining that I have a poor memory but don't want to slow the meeting down by having to write everything down. It's amazing how much more understanding they become, and how much more calmly they approach the content of the meeting. And how quiet the meeting becomes, generally...

Fame at last!

2009-07-25T06:51:00.008+01:00

This blog has been mentioned in a website! Actually, better than that, it's a cancer charity site (http://brainstrust.org.uk/). Do go and have a look - there's lots to see and some very worthy aims too. I'm meeting the founder of the organisation this week and I'm really looking forward to it. I'm hoping that I'll be able to provide some help in some way or other. I found the organisation after reading an article in ThisIsLondon about a girl with brain cancer who was/is going to have her benefits reduced considerably: http://tinyurl.com/lze94n. The story in the article is terrible and is well worth reading. The irony of the decisions made by the agency, as far as I can tell, is that she looks okay to work - and this may be true. But that doesn't mean she's going to find a new job easily - if at all. That's me above, there, and as you can see (I hope!) I don't look ill - quite the opposite - but as you'll know if you've been reading this blog, I've got brain cancer too. I'm fortunate enough to be employed at the moment so I haven't had to worry about benefits and I'm very glad that I don't have to. I'm not sure what a potential employer would think about things if I told him what my current condition is.

So Lisa, the lady in the article, has my complete support and I just wish I could help her in some way.

I've had lots of complaints

2009-07-22T21:41:00.004+01:00

...Apparently I'm letting my huge fan base down because I haven't posted recently. Anyway, there's not that much to report, which is good. I feel fine, I've not had a seizure for a while now, which is great, I'm back at work, which is beneficial, and at the moment, Andy has decided that I don't need more MRI scans until November, which is really good.

On the down side, I do have two irritating side-effects. The first is my memory. It was never good, even at the best of times, but it's really embarrassing at times now. I've taken to carrying a notebook and pen or a little voice recorder or other things so that I can record what I discussed with someone else and note it down somewhere. It has saved me a lot of trouble.

The other side-effect is my sleep pattern. It's still being less than perfect most of the time and I find I'm waking every hour or less during the night. This is usually after midnight but is most disturbing as it can take me some time to get back to sleep again. What's worse is that I find I'm nodding off in the office in the afternoon! It's just as well I'm not operating lethal machinery...

I'm going to seek advice from Andy or Charlie about this.

Time flies

2009-07-02T19:40:00.003+01:00

There's a wonderful literary word which means using a word in the way that plays with the content of the sentence to give conflicting meanings. It's called "zeugma". The reason I thought about that word was because of my title for this blog entry. There's a well known joke sentence which states that: "time flies like an arrow, but fruit flies like a banana." It's believed that once a computer can understand what that sentence really means, we are close to artificial intelligence...

Anyway, I just spotted how long it's been since I posted something so I thought I'd better. I'm not dead, as you can probably now gather. I've been a bit remiss about posting things because I've been quite busy. I've gone back to work and I seem to be doing okay. I've had good news from the Neuro and co and although the last MRI scan still showed lesions and little white patches which intimate cancer, this is no surprise and certainly not anything that Andy is worried about. I don't have to have another scan for 6 months.

And that's it, really. My sleeping pattern is still somewhat disturbed but I think that may have as much to do with the mugginess of the weather at night at the moment as much as anything else.

Improving news

2009-06-08T18:58:00.002+01:00

I hate putting this sort of stuff out because I feel like I'm tempting fate. So if fate wouldn't mind looking the other way for a moment or two, that would be great.

My neuro, Charlie, mailed me to say today that he was generally pleased with my progress and would be happy for me to return to work. So, apart from anything else, the rest of you can welcome great weather in the next few weeks while I have to face the tube each day again!

I'll have to see how it goes. Hopefully, it'll go well. Fingers crossed.

Neuro visit

2009-05-21T09:31:00.004+01:00

Another posting which is fairly uneventful but is relatively positive. This week I went to see my neuro just to bring him up to date and touch base. It seems that I am doing well generally and that I won't need any more medication. However, I will need another MRI, which will be in mid-June, to check that the radiotherapy did what it was supposed to. And I had a blood test just to make sure that the medication I'm taking at the moment is being taken up successfully - or whatever the term is. Sadly, the nurse who took the sample jabbed me wrongly and didn't get enough blood so I've got to go elsewhere for another sample. Oh well...

Not good enough!

2009-05-16T20:40:00.004+01:00

I've realised that I've not been posting on my blog and THAT'S NOT GOOD ENOUGH! (sorry about the shouting). One reason for not posting is because everything has been generally uneventful in my own life, and the other reason for not posting is the exact opposite! The worst thing is that my Mother died just over a week ago of stomach cancer and so my mind has been all over the place. The death was quick and relatively painless but completely unexpected. At least we managed to say goodbye to her.

SO what I was complain about now seems somewhat self-indulgent really, but as I'm supposed to be letting people know what having this ailment is all about I should continue, but today I think will be a little shorthand. So - what have I noticed? I'm rubbish at guessing what time it is - and sometimes, even what day! Once I have this established then that's fine for the rest of the day but it's just getting started that's the problem. I'm also sleeping a lot more than normal and I don't seem to be able to do anything about that. I also forgot my MRI scan appointment last week but I think the fact that it was on the same day as my Mother's funeral appointment was a valid excuse.

Oh well, let's see what the next week holds!

It all goes quiet, and then...

2009-04-14T08:46:00.002+01:00

...I have another seizure. This happened late afternoon/early evening and didn't happen until I was in the ambulance. Anyway, the end result of this was that I spent the entire night in the hospital with electrodes attached all over my body and cannulae sticking out all over my arms. I was quite confused about day/time etc. Anyway, we managed to escape finally and I'm off to get a few more MRI scans this afternoon. But I won't know what they show until mid this week when Andy returns.

Oh well, there's nothing I can do about it, and everyone's being so caring.

Update from Nick

2009-03-06T09:24:00.003Z

With my pinging sessions completed, I am now awaiting another MRI scan and a natter with Andy to work out what happens next and to find out how successful the pinging was. I had a meeting with the radiology consultant yesterday and he's generally confident about how things have gone.

Generally speaking though, except for the tiredness, I feel really well.

To sleep, perchance to dream...

2009-03-01T10:22:00.002Z

I'm very pleased to find that (unless I've not spotted something) the only side-effects I'm having from the pinging are a bit more hair loss and needing to snooze a bit more. The disruption to normal sleep patterns is irritating but, like I've said before, if that's the worst I have to put up with, then I can't complain. I still have short-term memory loss at times and so I'm writing a lot more down. But that's about it!

The End

2009-02-23T19:05:00.003Z

Well, not the end, but I wanted to sound dramatic! I've finished my pings today and brought my mask home. One of tomorrow's projects will be working out how to photograph it.

This may sound weird but I am actually sorry that I won't see the various people at the hospital who looked after me. They were all very friendly and we had a good laugh. Considering that I was actually going there for radiotherapy treatment for brain cancer, that's not bad, is it?

I thanked them for their kind attention and brought them an extra cake!

Next stop is another MRI scan and a meeting with the radiotherapy consultant.

Waffle Iron

2009-02-22T22:59:00.003Z

Tomorrow I have my last zap/ping and, no doubt, I shall be posting after that. But I thought I'd just fit one in beforehand anyway. I must admit that I feel very sad that I probably won't be seeing all the people there again as they've all been so friendly. They really have been nice people. Which is why I brought cakes in! Tomorrow will be interesting because one of the staff asked if it were possible to do a nice cake without using eggs. My Mum took up the challenge but wasn't overly impressed with the results. We'll see what the hospital staff think.

Anyway, after tomorrow's zap I have to have another MRI scan at some point and then they can decide what to do next.

The reason for the title of this post, BTW, is because my forehead looks a little like I fell asleep on a waffle iron. I have this strange, tanned bit of my head - strange because there are holes in the tan which are due to the mask. It's all minor, but funny!

Almost done!

2009-02-18T00:43:00.003Z

I'm only talking about the current set of pinging I'm getting. There's only about 4 more daily zaps and that's it. Well, it's not. I've then got to have an MRI scan to see what effect all this zapping has had on my tumour, which hopefully will be positive. That's positive for me, not for the tumour...

As I've mentioned, one of the side effects of the radiotherapy is tiredness. But what wasn't discussed is how that can be a real irritation. (I choose my words carefully because I feel I've been really lucky with the way things have gone).

Anyway, the tiredness kicks in at about 4pm and while I'm still at home, I sleep for an hour or two. Not sure what I'll do when I return to work! But the other effect is that I now start waking up at 3am, 4am etc, and I don't know whether it's better just to get up at these times, because it's very difficult getting back to sleep. Plus I'm trying to normalise my sleep pattern and this isn't making it easy.

But, Hell, if that's the worst I have to deal with, I'm getting it easy!

Poseur time

2009-02-15T20:35:00.002Z

While I've been lying there, being zapped (or "pinged" as I like to call it now), I've been trying to think what the noise of the pinging machine (apparently caused by the MLC - cf multi-leafed collimator) reminds me of. And although I've described it previously as a carrot grater, that sounded too unsophisticated. Well, no, inaccurate is more - erm - accurate. Anyway, the MLC sounds more like someone enthusiastically grating nutmeg. All you need to do is imagine a yummy egg-custard or a lovely, creamy cappuchino while you're being pinged and, apart from the disappointment you'll feel when you slide out from the CT machine to find there's nothing waiting for you, you're fine. I'm sure if you bribed the radiology people properly, you'd probably find that a nice latte could be waiting for you anyway.

No news is good news

2009-02-12T17:27:00.003Z

It may be apparent that my postings here have become less frequent. That's for no other reason than there's nothing to report, really. I have been extremely fortunate that I don't seem to have suffered major side-effects, and even the other ones are minor. Obviously.

As I wrote in a previous post, I have lost a little bit of hair but only around one temple. When Nick looked at it yesterday he was well pleased. "What a lovely straight line." He said. He then told me that that indicated the accuracy of the zapping. He had also told me previously that it is possible to develop a bald patch diametrically opposite the main target. When we looked today, it appeared that nothing had happened on that score. He then told me that it was quite rare for that to happen, but that he always told people about this possibility because there were times when it did happen and the patient and/or their friends then got all pannicky, thinking that the patient was being zapped in the wrong place! Which, in certain ways, is understandable.

Hair today...

2009-02-01T08:52:00.008Z

I've just begun to lose a little hair. Not much and, it was assisted by my other half 'gently' tweaking it out. It did come out quite easily though so it wasn't like it was being wrenched. So I now have one temple which is slightly less hursuit than the other. But it's barely noticeable. And the hair was grey before so it's hardly a loss! If that's the only side-effect I suffer I will be very happy.

So this is what it looks like now.

How neat is that? Even the biopsy scar is very tidy!

And, generally, I am happy. I know I'm tempting fate badly, but I feel like I've gone past the nadir of what's happening, and I'm halfway through treatment and I've been seizure-free for over 4 months now. Only another 8 months to go before I can get my driving licence back! So, all is good.

Yaay.

This is silly!

2009-01-29T18:40:00.003Z

London Underground did their best to ensure that I would be late for my appointment, but they failed. I had phoned ahead to warn the hospital that I may be late, but I actually arrived a little early.

So I went to get zapped and it was a new radiologist who introduced herself and checked my date of birth (as they have to). As I was laying myself down on the 'bed' or whatever the official word for it is, I asked her when her birthday was. She told me and that made her a Scorpio too. I have never read anything in astrology books about Scorpios being especially attracted to radiology. Medicine generally, yes, but not radiology. I think it's something that needs to added...

Over the weekend, the beds are being replaced and we're getting new ones. They're made from carbon-fibre and that's because they don't store the radiation, apparently. I doubt they'll be any more comfortable, though.

My zapping now lasts only about 15 mins at most and usually less. I'm not complaining.

Scorpio?

2009-01-28T09:25:00.003Z

Every day, as part of the standard procedures before you're zapped, you are asked your birthdate. It's to confirm you are who you are or to check that you're not beyond help or something... Anyway, yesterday, when I said my date, one of the nurses said "That's my birthday too!" (not the same year, though). And I said "so you're a Scorpio too!"

Then most of the other radiographers and the rest of the team said that they were as well...

It was a bit bizarre - a little bit like the scene in a film which I've forgotten the title of, where everybody is feasting at a table and then one person looks up at a mirror and only sees his own reflection...

I'm not suggesting for one moment that Scorpios are vampires. We're not. Honest. Well, most of us aren't. But it was quite a coincidence for all the people to have their birthdays around the same dates.

Secret Photo!

2009-01-26T17:58:00.006Z

Okay, it's not actually a secret photo because it's not really of me. But at the hospital I have to go to, photography is strictly forbidden, which I think I've mentioned previously. So - this photo is one I've lifted off Google, but it's a fair representation of my treatment and it almost looks like me! Anyway, that is like the mask that I had fitted and that I have to wear when I'm being zapped. As you can see, it's very open-meshed and so there's no problem breathing and you don't feel overheated. It's fairly rigid, which perhaps isn't apparent in the photo. It's still a little off-putting when they clamp it down, but you get used to it. If you think you might get a little worried about having this done to you, ask your doctor for some Propanolol. It works wonders!

Collimators

2009-01-24T13:16:00.002Z

Collimators??? Well, now I have an explanation as to why the zapping sounds like a demented carrot grater rather than some of the noises out of Star Wars! The reason is because of what are called "Multi-leaf collimators". You can read the complete guide here: http://www.aapm.org/meetings/99AM/pdf/2787-9625.pdf if you really have to.

Basically, it's a really clever device that blocks bits of the beam while you're being zapped to ensure that bits that shouldn't be zapped, aren't. And it moves around really quickly and, in my case, makes sure that my eyeballs aren't x-rayed, for example. This isn't the same as getting an MRI scan where your eyeballs are safe!

Anyway, I'm now a third of the way through the treatment and not feeling any ill effects except for the bleedin' journey...

The eyes have it!

2009-01-22T20:08:00.002Z

My zapping is getting quicker every day. This is mainly because when the zaps first start they have to do a few CT scans just to make sure that my head's positioned correctly. Once the alignment is sorted, there are fewer scans. And so my zapping today only took about 12 minutes, which was nice. Amusingly, if you try to text someone on a phone with predictive texting, the word "zapped" is presented as "warped" - which somehow comes over as more fitting!

Just for a laugh, here's an early MRI scan (about a year and a half ago) which I thought I'd publish because it's got my eyeballs in it!

Scans and such

2009-01-20T16:16:00.005Z

I asked the lovely people at the hospital whether I could have copies of the CT scan report that they get. They very nicely said that I could. And so I got a colour photocopy of one of the outputs they get. And this is the main scan (on the left).

It looks like a close-up of a particularly bad bit of knitting. If you want to get into, or you enjoy knitting, go to http://www.stitchnbitch.co.uk/ - especially if you're in London. The picture is actually a mirror image in as much as the left and the right are swapped. But the front is at the top and the back is at the bottom. I'm not quite sure what the greenish zones represent, but the blue squiggly line represents the area that is to be, and indeed is being, zapped. There's a little bit of me that feels a tad uncomfortable about the blue line being a little squiggly. But I'm sure it's fine. There are other pictures on the report, but I've forgotten what they mean. I'll ask again tomorrow.

But some people have suggested that my skull looks a little empty when you look at the CT Scan. Huh! I've added an early MRI scan to prove otherwise...

5 down, 25 to go...

2009-01-17T09:41:00.004Z

Yes, I've had my first week of zapping and it's all been fine - as long as you don't mention the London Underground. One day trains were heavily delayed due to flooding at Paddington Station. You may have heard of the station. It was where Paddington Bear was originally found in the charming children's books by Michael Bond. Now, the thing is, there had not been any heavy rain, and for those of you who do not know London very well, Paddington isn't exactly close to the Thames, so the flooding was a bit of a mystery. But, anyway, I was going to be soooo early that day! In the end I had to get a cab for part of the journey, which I wasn't impressed with. I should point out that even on a good day, my journey takes an hour and a half each way.

On the journey back there was someone who had thrown themselves on the rails (poor chap) and the Fire Brigade in attendance at one station and so tube lines were suspended/closed, delayed etc etc. So it was a fun journey home too. But what I missed was this: http://uk.youtube.com/watch?v=VQ3d3KigPQM. I was at that station about half an hour before this started...

But today everything was perfect and what was even better was that the zapping was much quicker that day. This is because they didn't need to take CT scans and just had to zap me and so it was all over and done with in less than 15 minutes, which was lovely.

I now have the weekend off and go back to the zapping on Monday. I haven't noticed any side-effects yet, which I'm pleased about.

Zap 3

2009-01-14T21:49:00.002Z

I wasn't late today so I think they didn't tighten the mask down so much. Yes, I know that's just my imagination, but it's certainly ensured that I turn up on time every day from now on.

I'm getting sort-of used to the zapping now. I talked to the team before the session started this morning, to ask them if they could occasionally say something just so that I know they haven't run away or something. There are a couple of times during the session when everything goes quiet and you wonder what's going on. You can't exactly move much and although they say they can hear you clearly, it's not convincing. Your mind starts to wander and think about films like "28 days later" and you wonder how easy it would be to release yourself from the table...

It turns out that the very quiet bit is because they've been doing CT scans as well as zapping me. The CT scans are to ensure that everything is positioned correctly and that I'm being zapped in the right places and so after they've done these scans they have to analyse the results to make sure everything is okay.

I had a brief meeting with Nick after the zapping and he's happy about how everything is going. So that's nice.

Zap 2

2009-01-13T16:41:00.003Z

Second day of zapping. Zap has now entered into my subconscious in very silly ways. I've just ordered a Frank Zappa album (Joe's Garage) which I haven't listened to in years. Now I'm trying to find out why ZapF Dingbats (a particular typeface) is called ZapF.

The zapping today was quite straightforward, although the mask felt a little tighter than it did yesterday. They assured me it wasn't. I'm also aware that when they made the mask I was probably a little apprehensive and so my mouth was held tightly shut. This means that now, when the mask is fitted, I'm really only able to breathe through my nose. Which is fine, because that's the best way to stay relaxed. But if I get a blocked nose, I'm stuffed (if you'll excuse the pun) and so I may have to skip treatment that day...

Had an appointment with Andy after the zapping and that is always a pleasure. I really want to invite him out for a beer because we always have a lot to chat about (or maybe it's just me) and I just think how much fun it would be to take him to a pub where there's other people I know and just introduce him as "Andy, my brain surgeon." How cool would that be? It's a pity that the reverse would just sound sad: "This is Alan, my project manager..."

Anyway, all seems to be fine. I just hope that I remain seizureless and that this zapping assists on that score.

Zap!

2009-01-12T20:13:00.002Z

So I finally got zapped today. All in all it was pretty much an anti-climax. I just waited until I was called into the radiotherapy room and then lay down on the really comfy perspex bed (wipe clean, I guess) after checking some forms and stuff like that. Then they "fitted" my mask (the one I had made about a week ago). They did say that the mask might feel a little tighter than last time, but what they didn't mention was that one of the reasons would be because they were actually attaching it to the bed. I know it's supposed to stop my head moving around too much, but this lot were making certain. Actually, that's not fair; they were very gently really, it was just a little offputting when I was worried whether the bridge of my nose was strong enough to withstand the pressure... As I've said before, the mask is very lightweight and so there's no problem breathing. But as you're lying there, getting zapped, fate always ensures that you get an itchy nose too.

The whole process is very uninteresting. You lie there with your eyes closed and this mask sort-of clamped to your face while various people who were in white coats exhange snippets of conversation that sound like they really should be in a Bond movie. Occasionally they say things to you like "okay - four minutes and 37 seconds and we'll be back with you" and all you can do is give your thumbs up signal.

Anyway, occasionally I hear loud noises of machinery moving somewhere around me (but it doesn't make Star-Trek style zappy noises, although I assume that's what it's doing).

After all this is over, a very nice nurse tells me how I've got to look after myself and sells me some ridiculously expensive face oil (£19 for 1 fluid ounce...) and I feel I have no option but to buy it. She's sort-of like an executive Avon lady. Amway has nothing on this! Anyway, I apparently have to be very gentle to myself and use baby shampoo when I wash my hair and a gentle toothbrush and stuff like that. We'll see.

Next zap tomorrow - and the next one after that is the day after that. And... well, you get the picture. I just get weekends off.

Prequel

2009-01-11T21:00:00.002Z

This post is probably not very important except that some people, if they're reading this because they're going through the same sort of stuff, may find it helpful. Maybe not. Who knows?

Anyway, tomorrow I go for my very first radiotherapy treatment - or my first zap, as I shall refer to them as from now on. I've had a lot of support from lots of different people; home, family, work, friends, and they've all wished me luck and asked how I feel about being zapped.

To be quite honest, I have no feelings at all, really. As I've suggested in a previous post, the mask fitting was not something I was looking forward to and that turned out to be totally uneventful (I'm not complaining!) Unless someone is lying to me, tomorrow sounds like it's going to be similarly uninteresting. That I will just lie there, hearing a machine zip around and feeling the "bed" I'm on (the reason I put "bed" in inverted commas is that they may as well call it a table for all the comfort it provides) moving in and out of the CT scanner - which it may or may not do. And then 10 or fifteen minutes later they'll say "thanks" and off I'll go.

We'll see...

Auras

2009-01-08T19:03:00.003Z

I'm one of the fortunate people who is able to recognise the signs that I'm going to have a seizure. I used to call it a "precursor" but for some reason, the standard term is "aura". I don't know why that is but I think it may be because some people see a sort-of aura around objects just before the onset of the seizure.

I say "fortunate" because it generally means I can prepare myself for it and move myself away from anything dangerous.

I've been asked to describe what I detect or feel that indicates to me that I'm going to have a seizure and it is quite difficult. But I consider it a decent challenge to be given, so here goes.

When I had my very first seizure (see first blog post) my symptoms were amazingly text-book tonic-clonic apparently. I won't bother describing them again.

These days, the first symptom I detect is a vague feeling of anxiety which I can't pin down to anything. I also get pins and needles in my hands. If it feels strong enough then I get determined not to let it "win" and start breathing deeply but in a controlled way. At the same time, sounds get slightly distorted - particularly speech, although not when someone is talking directly at/to me. I blink more frequently, although I can still see properly. I also tend to feel nauseous and hot.

I don't get aggressive but just want to help and I think I believe that I'm in more control of my faculties than I actually am. For example, in one case, when the ambulance men turned up, and I was sitting on the floor, I said I'd walk to the ambulance. They said "no way" and I said "but I'm fine" and they had to threaten to strap me to the wheelchair in order to get me to behave. Even then I said "I usually have to pay for those sort of services"

Labels and posts and stuff

2009-01-04T12:01:00.005Z

I've been in contact with some other people who have been through tumour experiences themselves and it's all been very illuminating. One person has suggested that I put some labels in my posts but apart from the obvious, I'm not sure what to put. So I'll stick to the bleedin' obvious. A friend described how her hair fell out in clumps when she was getting her radiotherapy so I've decided instead to get a very short haircut. A number 2 as it's known in the trade. It'll hide all the grey, anyway...

The Gamma Knife...

2008-12-30T16:12:00.003Z

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!

2008-12-17T22:10:00.002Z

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

2008-11-25T20:59:00.003Z

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...

2008-11-13T09:51:00.003Z

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

2008-11-08T10:19:00.002Z

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!

2008-11-06T20:41:00.003Z

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?

2008-11-01T17:41:00.003Z

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

2008-10-27T11:05:00.002Z

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?

2008-10-23T13:30:00.003+01:00

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

2008-10-22T20:49:00.002+01:00

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

2008-10-18T09:30:00.002+01:00

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)

2008-10-10T19:52:00.004+01:00

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

2008-10-08T15:19:00.004+01:00

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

2008-10-05T09:23:00.002+01:00

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

2008-09-30T19:53:00.003+01:00

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...

2008-09-19T20:09:00.002+01:00

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

2008-08-23T18:11:00.003+01:00

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?

2008-08-15T18:52:00.005+01:00

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

2008-08-15T17:16:00.002+01:00

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...

2008-08-12T20:39:00.003+01:00

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

2008-07-23T14:03:00.002+01:00

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

2008-06-07T15:26:00.003+01:00

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!

2008-05-16T21:45:00.002+01:00

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...

2008-05-03T10:03:00.002+01:00

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

2008-04-24T22:50:00.003+01:00

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

2008-04-19T09:22:00.002+01:00

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?

2008-04-12T09:14:00.004+01:00

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

2008-04-01T23:02:00.003+01:00

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

2008-03-14T12:02:00.002Z

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...

2008-02-25T21:21:00.002Z

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

2008-02-16T23:36:00.002Z

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...

2008-02-11T20:05:00.000Z

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

2008-01-14T22:49:00.000Z

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.

Lamictal addict

2007-12-09T21:43:00.000Z

Lamictal (AKA Lamotrigine) is the anti-seizure drug that I've been prescribed. I've been taking it for some time now and it would appear to be effective most of the time. As I said in my previous post, I still have the occasional seizure but they seem to be less intense and I tend to recover quicker. But - and this is the important point - I worry (and, more importantly, so does my wife) that if I miss a dose, then another seizure will kick in. This is not entirely imaginary; when I missed one dose I had a fit the following morning.

So now I take them religiously twice a day. I carry spares in my wallet just in case. If I'm out for the evening I have to phone my wife at around 7pm (the time when I'm supposed to take the evening dose) just to let her know that I've taken them.

But I've now got a problem. For whatever reason, my doctor seems to prescribe them piecemeal. In other words I get, say, 4 weeks worth of the drug. Why can't they give me a shitload? As far as I can tell, I'm going to have to take it for the rest of my life.

I could rant a lot more, but I can't be bothered. Suffice to say that I've written to my medical practice to complain about their attitude, which no doubt makes me sound sad, but I think it's necessary.

Minis and songs

2007-12-01T08:35:00.000Z

I have had one or two what I would call 'mini-seizures'. These are ones that are presaged by one or two clues, or auras as they're known in the trade, and then - well, I don't know what actually happens during the fit itself, but whatever it is I don't seem to suffer so much afterwards so I can only assume that I don't go into heavy spasm, nor do I wet myself or bite my tongue - which is nice. All that happens is that I feel very drained afterwards. Oh and I puke or just retch - a lot. Luckily this has not happened outside home although I did get the early signs at work the other day but managed to get home in time.

I also had another MRI scan 2 weeks ago and I was pleased to hear that the tumour/glioma hadn't grown. The neurosurgeon's PC seemed to be playing up which meant that he wasn't able to see the images properly and I ended up doing a bit of PC support but because he didn't have the proper viewer on his machine he had to look at thumbnails which looked too small to me to be of any use, but he seemed to think they were. The appointment also seemed to be very short. I told this to my neurologist when I had my next meeting with him and he said that this was good. If there was any bad news I would have been there a lot longer.

My neurologist is a little worried that I'm having these mini-seizures as the drug I'm taking (Lamotrigine or Lamictal) should have stopped them entirely. So he's sent me for a blood test to find out what level of the drug is in my bloodstream. He thinks I may have to double the current dose of 250mg twice a day. Unfortunately I've lost the form for the blood test so I'm going to have to ask for another one.

Now - the bit about the songs. When you go for an MRI scan you are told that it's a good idea to bring a music CD with you - preferably something loud because the MRI machine is so noisy. My previous scans were in a local private hospital, but this one was in the Cromwell, in London. In the previous machine, as you lay down they put a pair of headphones on you. In the Cromwell they don't. And that was the problem. Because I had decided to bring an album called "Fitness to Practice" by a group called "Amateur Transplants". The songs, which mainly have a medical orientation to them, are not in the best of taste and are quite sweary. They were made (in)famous by "The London Underground Song" - well, famous to anyone who uses the London Tube. Go here (http://www.backingblair.co.uk/london_underground/) to hear it.

Anyway, other songs cover things like menstruation, Downs Syndrome, drugs and other such things. So, as the speakers blare out all this stuff - and the radiologists are all female - I can't do a thing because my head's strapped to the bed that slides in and out of the MRI scanner, cringing inwardly.

Towards the end of the sequence of scans they bring you out of the machine so that they can inject dye into your arm for some more shots to get a contrast. So - out I come and I quickly catch a glimpse of the radiologist who's going to give me the jab and then quickly shut my eyes again (I always keep my eyes shut - it's the claustrophobia thing again). And then I apologise profusely and explain that I didn't know it would be on speakers otherwise I would have chosen something different. She says not to worry.

Anyway, the scans eventually finish and I'm released from the machine. Once again I apologise to all and sundry. Especially about the periods song. They laugh and say that they thought the album was really funny - that they haven't had so much fun doing a scan before and that at least one of them was going to order a copy. "I loved the one about periods," said one of them, "I'm going to play it to my husband!" So all was okay in the end. I have my next scan in 3 months so I'll see if I get the same people. I don't know what I'll bring then...

I told the neurologist about this when I saw him. He told me that that was what radiologists were like...

Whither imagination?

2007-10-28T07:55:00.001Z

A strange observation perhaps, but it appears that I have lost my imagination. Not completely, of course; I can't imagine, if you'll excuse the pun, what that would be like. But what's gone is my creativity. I used to write a lot. I'm not saying any of it was necessarily any good, but people seemed to enjoy it. I've actually written two novel-length stories. Most of it was humour, some of it was black humour, and I really enjoyed writing it. I would write when commuting, I would write on holiday - whenever. But now I just can't get started. I don't think it's writers block, because it's not like I'm stuck on any one thing, it's just if I try to start writing something, I just think it's rubbish or disinteresting or I can't get into the flow. It truly is most infuriating. I also think it's probably the one thing (apart from not being able to drive) that gets me down about my condition. All the other stuff that people think I should get upset or depressed about with regards to having a brain tumour don't seem to bother me in the slightest. But not being able to write is a real bummer. I'm just glad that my income doesn't depend on it.

Oops - I done it again!

2007-10-16T23:19:00.000+01:00

I've had two more seizure attacks and you could say that I was lucky because both occurred while I was in bed and both at weekends. I suppose I should also be glad that I am now able to recognise the precursor to the actual seizure. In all three last cases (the two reported here plus the one in the blog on the 1st of October) I have woken from a disturbing dream, although I can't describe what the content of the dream was, smelling this sharp and unnerving smell that I've described in previous blog loggings. I wake up and smell this and immediately know that things are not going to go comfortably. I can feel my body move into spasm and I try very hard to control my breathing and movement but it is beyond my control. One thing that is taught to people observing a seizure is that when this occurs, see if the person still recognises their name. It's a bizarre idea, but it works. As long as the person thrashing, dribbling, keening and so on recognises their name then there's no need to call an ambulance. They're still all right.

Bollocks.

If I'm in that state, I want Captain Scarlett, Doctor Who and Bones at my side within seconds.

The fucker is that I had gone 2 1/2 months without a seizure. (You have to go 12 months without a seizure before you can drive again). Now it's all reset and I've got to wait for another year before I get my licence back.

More about smells

2007-10-01T21:45:00.000+01:00

I've noticed that I've become more sensitive to smells generally. Scents that I might have ignored in the past are now noticeable by their acridity. Some even seem to be "in my nose" - as if they don't really exist. I'm aware that I have become a little obsessed about these smells, although it's more a case of assuring myself that they are not precursors to a seizure as opposed to panicking about them. But they are certainly more noticeable than they were before.

The best way to describe them is if you imagine that the back of your nose is dry and then some acidic or alkalinic vapour runs past. Because your nose is dry, it can't detect the scent as it normally would, but instead just detects the caustic effect it has on the visceral tissue. An exaggerated equivalent of that is what I experience shortly before seizure, so I am sure you can imagine why the mere detection of something similar to this is disturbing.

It's that smell again...

2007-09-22T22:13:00.000+01:00

I had another seizure this morning. Not enough to call the ambulance but still a full-blown epileptic fit. I think it may have been a combination of alcohol and forgetting to take my medication at the right time. I think there must be more than this involved because I've done both of those without fitting but maybe I was just unlucky this time. I hope it's a one-off rather than them coming back again.

But with reference to the title, this seizure was signposted by the strange, strong smell that I experienced just before I had my first fit. An intense smell, like smelling salts in effect, although it didn't smell like that. This time I recognised it before the fit itself kicked in properly. I wasn't panicking but I knew that something was happening. I also felt very strong pins and needles in my hands and tried to say this but was not able to string the words together. It was very annoying. I just said that I wasn't getting frightened or anything, but I couldn't. And that's the last I remember until I came to after the seizure. I spent the rest of the day feeling very tired and slept for a lot of it.

Short straw (who got the...)

2007-09-19T00:30:00.000+01:00

My neurologist and my neurosurgeon have decided to split responsibilities with regards to me. The neurologist has decided that he will now only be responsible for any seizures I may have from now on.

I forgot to say that I have always been interested in the brain and rate among my favourite writers about the brain: Vilayanur Ramachandran and Oliver Sacks. I told my neurologist this and he told me he hated them. I then told him that I'd just read "The Private Life of the Brain" by Susan Greenfield and he told me he hated her too. My neurosurgeon didn't seem too complimentary about them either. I call it lobe envy.

So - the ologist is looking after fits while the surgeon is looking after MRI scans and beyond.

I am very lucky in that I have private health insurance through the company I work for. But I am also very lucky because the ologist and the surgeon have said that they would be willing to continue looking after me, if the private health scheme decided not to, via the NHS, which is not only comforting but also something I am grateful to the two guys about.

What I'm interested to know is - which one drew the short straw? I have two ways of looking at this; in theory (and, I hope, in practice) the likelihood of me having another seizure is quite low, given the drugs I'm taking. So that would mean less income for the ologist. So he might have wanted a bigger slice of the action. On the other hand, touching all sorts of wood, my tumour might do fuck all for years, in which case the surgeon will only get a relatively low income from looking after me. But I'm sure neither of them are money-grabbing or they would never have offered to look after me on the NHS. So, my only conclusion is that the surgeon is most interested because my particular problem is extremely rare and so he wants to study. But I honestly don't care. They're both decent chaps and as long as they look after my brain that's all that matters.

Next scan - November some time.

I've started thinking - 11/08/07

2007-08-12T14:34:00.000+01:00

As I put in a previous post, the Internet - or indeed books - may not be your best friends. I did a bit more research and found that there are roughly 4 types of glioma. I won't bother listing them here, but none of them makes pleasant reading. So much so that I've now written to my neurologist asking a question that for some reason didn't occur to me before:

Is my life expectancy affected significantly by the presence of this glioma? Read the research and I'll be lucky to last more than 10 years. However, as I've said before, my glioma is low-grade and so these figures may not be relevant. On the other hand, some of the articles I've read do refer to low-grade gliomas too, although it's not clear whether the life expectancy figures refer to those too.

Typically for me, the type of glioma I have is very rare and so there are few statistics to work from. So nobody really knows for sure. I guess we'll just have to keep an eye on the MRI scans...

Once again, however, I feel perfectly fine and positive about things.

Neurosurgeon appointment - 08/08/07

2007-08-12T14:11:00.000+01:00

This was to get a second opinion with regards to my glioma and also to discuss the options of removing it. The Neurosurgeon was a very pleasant chap and easy to get on with. I brought a copy of the MRI scans on CD as he was not provided with a copy. He had a quick look and spotted the glioma (tumour) very quickly (although my neurologist no doubt had supplied him with some clues). It turns out that it is about 2cms long and is, in the field of neurosurgery, considered to be relatively small. It is also in the right temporal lobe, just touching the right hippocampus. This surgeon does use the "Gamma Knife" which is a highly accurate and non-invasive way of zapping cancerous cells. Unfortunately, it is not appropriate for gliomas.

So he explains that I have three options: (a) do nothing and keep monitoring it. This is probably most appropriate seeing as it's low-grade and therefore relatively benign at the moment, (b) go for radiation treatment, which apparently you can only have once in your life (that's the series of treatment, not one radiation zap), or, (c) have it excised by surgery.

I've gone for (a). Why? Well, at the moment, it's not doing anything and the Lamotrigine seems to be doing its trick as far as stopping me from having seizures go. Option (b) is not attractive, especially as it can lead to hair loss, vomiting and all sorts of other unpleasant side effects. Also, as I said, you can only have it done once, so I'd rather wait until it's really necessary. Option (c) is almost out of the question. Because my tumour is quite deep within my brain, and because it's so close to the hippocampus, my neurosurgeon is worried that surgery could affect surrounding regions which could lead to severe short-term memory loss or, even, loss of use of one or more limbs. So that's a big no-no. It's also rather close to my amygdala - and damage to that is something I don't want to think about.

Next neurologist appointment - 11/07/07

2007-08-12T13:50:00.000+01:00

This is after my three seizures in a row, and my second MRI scan. I'm a little worried because I don't know what he might find - i.e. what might have changed in my brain since the first one. In other words, had the multiple seizures affected the glioma at all?

Well, the good news was, no it hadn't. The glioma was still the same size. The other news, however, was that he felt now that I should consider having it removed (he had previously felt that it should not be touched). He had decided this after reading a recent article in "Neurology" - apparently the trade magazine, as it were, for brain people. So I've been referred to a neurosurgeon for his opinion and for me to discuss everything with him.

Back at work - 02/07/07

2007-08-12T11:11:00.000+01:00

First day back at work since I had my 3 seizures. I've felt fine for ages, but I wasn't allowed to return to work until now. Everybody's been very nice and the company itself couldn't be more supportive. I feel a bit of a fraud because I feel so healthy. People seem to think I'm being very brave considering the news I've been given (having a brain tumour) but I don't really think about it. Apart from anything else, there's not much I can do about it so I don't see any point in moping or looking for a pity party.

MRI Scan #2 - 30/06/07

2007-08-12T11:07:00.000+01:00

My second MRI scan and I'm a bit better prepared. Having had 1 already, I know what's involved. Secondly, I've had 40mg of Propanolol just to calm me a bit.

This time I take "Kiss This" by the Sex Pistols to listen to. The MRI operator says that it's cool!

Hospital - 18/06/07-25/06/07

2007-08-12T10:45:00.000+01:00

I come to in hospital - I can't remember the time. I'm in bed with tubes in both arms (currently not connected to anything). I'm somewhat confused and don't really know where I am. For some reason I think I'm in some weird sort of nightclub and I'm watching someone (who is a nurse, although I don't recognise her as such) administering drugs to various people. I think that this is very dodgy and wonder how she's getting away with it in this club. I notice my wife has left her handbag on top of the drawers next to my bed (she's popped out for a few moments) and so I get up to take it to her (I don't want it left in the club). However, as I go to leave the ward, the nurse tells me I can't leave and to get back into bed. I get a little bolshy and tell her she can't keep me anywhere. She tells me that she can because I'm an in-patient. I ask her if she's sectioning me or something and she again tells me to get back into bed. My wife then returns and convinces me to return to bed. She then asks me where I think I am. I tell her that I'm in some sort of club. She then points at the various other patients in the ward and asks me who I think they are. I'm a little confused, but I tell her that they work for me. I don't remember much after that.

I'm kept in hospital for a week. Once again, I don't remember much of that timeeither. But I'm finally released, slightly drugged, and return home.

Seizure threesome - 17/06/07-18/06/07

2007-08-12T10:38:00.000+01:00

21:45 - At home. I have a seizure. I have no memory of it myself, but apparently I went into a fit and an ambulance was called. I was taken to hospital and given oxygen and an injection of some sort and then taken home again at about 02:00.

08:10 - My second seizure. Once again, I'm at home. I am taken by ambulance to hospital again.

10:00 - While still in hospital, I have a third seizure. This time I really overheat and I'm taken to intensive care with damp blankets on me to keep my temperature down.

I don't remember any of this happening.

The Internet isn't always your friend - 24/05/07

2007-08-12T10:08:00.000+01:00

Sometimes you shouldn't investigate stuff. I've spent some time today Googling about gliomas. It doesn't make pleasant reading. However, all the nasty stuff seems to do with high-grade gliomas as opposed to my low-grade one. Even so, it's raised more questions than answers. I've certainly got some things to ask my neurologist when I see him next.

Appoint with Neurologist - 23/05/07

2007-08-12T10:03:00.000+01:00

I had an appointment with my (note it's "my" now, rather than "the") neurologist today to get his interpretation of the MRI scans. Anyway, it turns out that I have what's called a "low-grade glioma." It's a form of brain tumour although it's not apparently malignant. The neurologist suggested that there was nothing really to worry about but it should be monitored. So he recommended that I had more MRI scans at 3, 6 and 12 months from now, except he hinted that he expected to see me before then...

My first MRI scan - 03/05/07

2007-08-12T09:27:00.000+01:00

After my seizure I saw my doctor who referred me to a neurologist. He then recommended that I had an MRI scan. I'm ever-so-slightly claustrophobic so I wasn't looking forward to it. I was told to bring some music with me, something loud, so I brought Fatboy Slim. Anyway, everybody was very pleasant and the only bit that spooked me was when I lay down and they put a sort-of grille over my face and clipped it into place. It wasn't touching my face, nor was it a full face-mask but I just felt uncomfortable because I felt that I was clamped in. I closed my eyes the whole way through. During the experience I could hardly hear the music over the noise of the scanner. Every so often, the MRI operator would say "10 minutes" or "5 minutes" which is when the scanner would start up again. She would also occasionally ask if I was okay. Anyway, eventually the scanner slid back and light came back (although I still had my eyes shut) and I assumed that the session was over. I was wrong. It was just so that I could have a dye injected in my arm which would highlight the blood vessels in my brain. The injection didn't hurt but I had to go back into the scanner. Another 20 minutes or so and it was all over, however. Now I had to wait for the neuro to look at, and interpret, the results. In the meantime, I was given a copy of the images on CD. I had a look at them on my PC, and they were interesting, but I couldn't see anything wrong.

My first seizure - 11/04/07 - 9:30am

2007-08-11T14:06:00.000+01:00

I'd never had a seizure before - not even a hint of one. But there we were (my family and me) in the Gare du Nord in Paris, looking for left luggage so that we could leave our luggage and go for a wander until our train which was at something like 4:30pm. As we came out of the Metro I smelled a very strange smell. It had the effect of smelling salts although it didn't smell the same. For some reason this made me panic and I'm worried that it's a terrorist attack (this isn't like me). Anyway, I then get a feeling of deja vu and I mention this to my wife. This is the last thing I remember until I come to in this hospital in Paris.

Apparently, what I'd actually done in the meantime was look extremly pannicky, stuck my arms straight out in front of me and then collapsed, making strange sounds, frothing at the mouth, bleeding from the mouth because I'd bitten my tongue, and basically thrashing around on the floor. Some kind Frenchman called for an ambulance and I was taken away.

I was discharged that evening and we stayed in a hotel and took the Eurostar back to London the following morning. Eurostar were kind enough not to charge extra for us taking an alternative train.