Neuro visit

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!

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...

...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

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...

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

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

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!

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

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

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...

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!

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.