Today I decided to review my blog and noted the date that I'd had my first seizure. Then, for whatever reason, I found a website where you could calculate the actual number of days between two dates. So I typed in the date of my first seizure and today's (yesterday's) date. Strangely, it was exactly 500 days! How bizarre is that?
I'm now going to look at when the various seizures occurred to see if there is a pattern of some kind. There probably isn't, but wouldn't it fuck the neuro's mind up if I found that the pattern of my seizures fitted the Fibonacci series or something?
Saturday, August 23, 2008
Friday, August 15, 2008
I've had some feedback from some of my colleagues after I had the seizure at work. They're quite amusing.
I'm not sure quite what time it was after lunch but I started getting an aura. I'm sure I've mentioned this before, but an aura is where you get warning signs that a seizure is going to begin soon. It's difficult to describe. One symptom is that you feel like you really have to concentrate on what you're doing. You also get a general feeling of anxiety. The funniest one is that, after the first one, you start to recognise what's coming along and you think "Bollocks - I am not going to let this happen." And so you try very hard to control your breathing and concentrate on things and so on. It's a losing battle but it does have advantages. For example, I was apparently able to tell my colleagues what drugs I'm on, who my GP is, what my contact numbers are, how they should treat me, and so on. I love this paradox - apparently, if I hadn't been there, they wouldn't have known what to do with me!
So - back at the office. I can feel an aura coming on and I tell one of my colleagues who doesn't know what I mean. I go and sit on the floor, against a wall and try to control what's coming on. That's the end of my memory. Apparently I start telling people what to do, who to contact, what drugs I'm on and so on. When the paramedic arrives I tell him that I'm actually okay and I just need to weather this out but he disagrees and an ambulance arrives shortly afterwards. They tell me that they'll go and get a chair for me and I tell them that I'm perfectly okay to walk. Which I do. So, I get in the Ambulance and we're taken to St Mary's where I'm cannullaed (sp?) and so on.
Apparently I have three seizures. I wake up to find I've got an oxygen mask on. I have no glasses and therefore can't read. I'm bored stiff. I have two days of this...
The hospital staff were very, very nice people.
I'm not sure quite what time it was after lunch but I started getting an aura. I'm sure I've mentioned this before, but an aura is where you get warning signs that a seizure is going to begin soon. It's difficult to describe. One symptom is that you feel like you really have to concentrate on what you're doing. You also get a general feeling of anxiety. The funniest one is that, after the first one, you start to recognise what's coming along and you think "Bollocks - I am not going to let this happen." And so you try very hard to control your breathing and concentrate on things and so on. It's a losing battle but it does have advantages. For example, I was apparently able to tell my colleagues what drugs I'm on, who my GP is, what my contact numbers are, how they should treat me, and so on. I love this paradox - apparently, if I hadn't been there, they wouldn't have known what to do with me!
So - back at the office. I can feel an aura coming on and I tell one of my colleagues who doesn't know what I mean. I go and sit on the floor, against a wall and try to control what's coming on. That's the end of my memory. Apparently I start telling people what to do, who to contact, what drugs I'm on and so on. When the paramedic arrives I tell him that I'm actually okay and I just need to weather this out but he disagrees and an ambulance arrives shortly afterwards. They tell me that they'll go and get a chair for me and I tell them that I'm perfectly okay to walk. Which I do. So, I get in the Ambulance and we're taken to St Mary's where I'm cannullaed (sp?) and so on.
Apparently I have three seizures. I wake up to find I've got an oxygen mask on. I have no glasses and therefore can't read. I'm bored stiff. I have two days of this...
The hospital staff were very, very nice people.
Awww
Aren't people nice? I went into the office the day after the news (13/8) and obviously had to tell a few people. I tried not to turn it into a pity-party but still got a little hug from a coworker (female). I explained that it is an open verdict at the moment, although the biopsy is near-enough a dead-cert and the radiotherapy is almost so.
I have to say that my company has been extremly supportive. More than they need to be, as far as I can tell. It helps.
The biopsy consists of me turning up at hospital, being given a general anaesthetic, having a hole drilled in the right side of my head, near my temple, and then some brain cells removed. I leave hospital the next day. Then they look at the cells and try and decide exactly what sort of naughty cells I have.
The radiotherapy consists of turning up at hospital every weekday for 6 weeks and getting zapped with x-rays for an hour. It's apparently painless. But they have to make a cool mask first so you get to have one made like they do in the movies which starts with your face being covered with wet bandages soaked in plaster of Paris or something. At least that's what I've read. I'll find out more when I see the Neurosurgeon next time.
I hope I get to keep the mask afterwards. It could be useful if I'm ever invited to an "Eyes Wide Shut" party...
I have to say that my company has been extremly supportive. More than they need to be, as far as I can tell. It helps.
The biopsy consists of me turning up at hospital, being given a general anaesthetic, having a hole drilled in the right side of my head, near my temple, and then some brain cells removed. I leave hospital the next day. Then they look at the cells and try and decide exactly what sort of naughty cells I have.
The radiotherapy consists of turning up at hospital every weekday for 6 weeks and getting zapped with x-rays for an hour. It's apparently painless. But they have to make a cool mask first so you get to have one made like they do in the movies which starts with your face being covered with wet bandages soaked in plaster of Paris or something. At least that's what I've read. I'll find out more when I see the Neurosurgeon next time.
I hope I get to keep the mask afterwards. It could be useful if I'm ever invited to an "Eyes Wide Shut" party...
Tuesday, August 12, 2008
Open your mind...
12/08/08 - Well that's what they want to do. I had another MRI scan today and the glioma's grown again. That may explain that seizure a couple of weeks or so ago. Anyway, now the neurosurgeon wants to do a biopsy and almost certainly also wants to start radiotherapy. As you can imagine, this has not made me the happiest bunny in the world, for a number of reasons.
Firstly, you only get one shot at radiotherapy (that doesn't mean only one "zap", as it were, but that you can only use radiotherapy as a treatment once). So if it's too early - tough. It'll clear up what it can, but that doesn't mean it gets rid of everything. And so it just reduces rather than kills off the effect of the tumour. Secondly, you still have to go through all the awfulness of Radiotherapy.
The tumour is not a lump - it's a distributed 'cloud' of cancerous cells - and so it can't just be plucked out. The biopsy will just, hopefully, identify what sort of cells these are, and this may change the medication I'm taking.
Firstly, you only get one shot at radiotherapy (that doesn't mean only one "zap", as it were, but that you can only use radiotherapy as a treatment once). So if it's too early - tough. It'll clear up what it can, but that doesn't mean it gets rid of everything. And so it just reduces rather than kills off the effect of the tumour. Secondly, you still have to go through all the awfulness of Radiotherapy.
The tumour is not a lump - it's a distributed 'cloud' of cancerous cells - and so it can't just be plucked out. The biopsy will just, hopefully, identify what sort of cells these are, and this may change the medication I'm taking.
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