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!

Speed is the word, is the word...

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

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?

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?

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!

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

...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

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

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

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.