This is silly!

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?

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!

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

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!

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

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...

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

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

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!

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

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

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

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...