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.

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.

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...

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...