Confused? Join the rest of us

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!

I've had lots of complaints

...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.

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.

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.

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!

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.

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...

A fishy time?

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

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

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

Whither imagination?

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.

I've started thinking - 11/08/07

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

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

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

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

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!

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

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

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

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.