New Scientist

I'm a subscriber to New Scientist (a UK science magazine) and have been for many years. Last night I got bored and sent a question to "Last Word" which is, unsurprisingly, the last bit of the magazine where people ask sort-of scientific questions, leaving it open to anybody to offer an answer.

So I sent the question: "How many megabytes do you think the approx 100mm cubed of material removed from my brain during the biopsy represents?"

And then I wondered - could it be terabytes or petabytes - or, as work colleagues suggested, just bytes?

And I thought I was the one with the problem...

So I turn up yesterday after being told that they'd given me the wrong day (i.e. the day before), ready for being "measured up" - whatever that entailed. I meet the very friendly nurse who confirms that my radiotherapy (RT from hereonin) will start on the 20th Dec. WHAT? I ask. Okay, I don't raise my voice, but I still ask. "I said that if it were possible, I'd rather that the RT didn't start until the new year!"

I'm met with a slightly blank face. "No, that's not written down here," she tells me. Luckily, Nick is around (he now knows, and accepts, that I call him Nick). We have a short meeting later, although that still means that I'm hanging around in the hospital for over an hour. So I see Nick and he tells me that he wasn't aware that there'd been an agreement to the RT not being started until 2009 but, reassuringly, says that he considers that to be okay.

So I still haven't been measured up yet. What I haven't mentioned is that this includes a CAT scan which is slightly more claustrophobic than an MRI scan. Plus I have to try out the bed where I get zapped which just makes me think of the "Goldfinger" movie. This basically involves making sure that you're comfy because you're going to be lying there for the next six weeks (not the whole time - just for about 20 minutes a day - but they need to make sure you'll be in exactly the same position.

Maybe the next appointment will be more illuminating...

Sad Santa

I have my appointment sorted for when I get measured up for my mask. I asked whether I had to be clean-shaven, including my eyebrows and the nurse laughed and said that unless I looked like Santa, I didn't have to worry. So let's hope Santa never needs radiotherapy...

Apparently, the way that they create the mask is not using bandages and plaster of Paris (another reason not to use Google) but by using a form of plastic that is thermo-pliable. Which I think means that as long as my face is warm they can form this plastic accordingly. I'll believe it when I see it. I now have in my mind that bit from one of the Star Wars films where Han Solo gets frozen in carbonite...

More info after the appointment.

Juuuust A Minute!

I met my radiotherapy consultant for the first time, whom I shall refer to as Nick. He doesn't know that yet. Anyway, he was an extremely pleasant chap who sounded like he was a contestant in the famous BBC Radio 4 show hosted by Nicholas Parsons. He spoke incredibly quickly but he also had a great sense of humour. For example, he said that I should bring along the CD of my most recent MRI scans (I so want to bring out an album with that title) to the hospital when I start my radiotherapy. I said that I could just do a copy and send it to him. "No," he said, and then to inspire confidence in him to me he added: "I'll only forget it or something..."

Anyway - the good news is that when he looked at my scans he described my tumour as "subtle". I asked him what that meant and he said that it confirmed it was low-grade. Which was nice.

He also intimated that the radio-therapy was less of a pain than I thought. Yes, it's still 30 working days, yes I may get nausea, hair-loss and tiredness as side-effects and yes it is an hour long per session, roughly. But the actual time that you're being zapped is more like 20 minutes. The rest of the time is all the messing about, waiting around, and so on. He seemed to think the whole thing was a doddle. But then, of course, he's not the one being zapped...

But, as with Andy, they all seem to be quite laid back about the whole thing and I don't think that's just because it's not them it's happening to. So I have my fingers tightly crossed that there'll be nothing more in this blog 'til 2009!

How much is your brain?

I'm very fortunate in many ways and one of them is that my job includes private health care. This has been very beneficial. It can also be quite enlightening at times. For example, today I received the latest notification of health expenses they have paid out on. For obvious reasons, everyone and everywhere shall remain anonymous but it's quite interesting reading the figures.

For example - my one nighter in the room was £1,300 (and no double-entendres are intended there). Plus £118 for physiotherapy. I'm not quite sure what that entailed... I certainly don't remember anything (ditto, re: double-entendres).

Then there was a bit less than a grand charged for "Pathology" which I assume is looking at what had been sucked out of my brain. Now - when you consider that they also charged just over 500 quid for a preliminary MRI scan and that the op itself cost just under 3 grand, that seems quite a low charge.

Like it's more expensive to give me a room with breakfast and a copy of The Times (which I didn't ask for) than it is to have highly trained specialists examine these especially important cyto-cells that were removed and announce that I'm okay! Relatively.

Ho hum. More news on Thurs, no doubt.

A little more understanding

Sometimes I think I should surgically remove Google from my system so I don't look things up. Actually, no, that's what my wife thinks. I prefer to at least know what questions to ask. Anyway, after that letter last week and all the nasty-sounding things in it I emailed Andy to ask whether it was as bad as it sounds. Well, the good news is that it's not as bad. A low-grade glioma tends to distribute itself a lot through healthy cells, which means that it is very dangerous/difficult to attempt to remove surgically, but while it remains low-grade, this is not a big problem. And this is why radiotherapy is the best treatment.

I feel better now I understand this!

More info than I want?

Today I got a copy of the letter that Andy's sent to the Radiotherapist with regards to my radiotherapy. It has a number of words/phrases in it that I'm not greatly comfortable with. Apparently my tumour "now involves a large part of the limbic system on the right side and also the basal left frontal lobe." So - I think that means that I shall be talking more bollocks than usual and won't remember it. The biopsy has "demonstrated that I have an infiltrating grade 2 Astrocytoma". I don't think that's as bad as it sounds from the Googling that I've done, but it still sounds quite intimidating I think.

Grade 2 is at the better end of the spectrum...

Clear to continue

So I had my meeting with Andy on Tuesday to get the results of the biopsy. As you can imagine, I really was getting quite nervous about all this. But I got good news when I saw him. Okay, I still have a tumour and I still need to have radiotherapy, but generally there were no nasty surprises. It's still a low-grade glioma, which is good.

I asked Andy if the radiotherapy could wait until the new year so that it didn't spoil Christmas and he didn't have a problem with that. So I'll be having it in January at some point. The fact that he didn't feel any urgency was very comforting. Obviously, I'd rather not have the radiotherapy at all, but that's not an option.

So I'm waiting for an appointment with a radiotherapy specialist and then I've got to get a mask made. That should be interesting and will give me something to write about.

Generally, though, I'm feeling fine, if a little tired at times. I think the strangest thing is that I've lost all interest in eating. I have to force myself to eat stuff. I don't mean that physically, but it's like I'm completely bored with eating. It's not causing me nausea and I'm not showing symptoms of bulimia or anorexia, I just can't be bothered to eat. But I do eat and I'm still a healthy weight. Andy thought this was an interesting symptom but had no recommendations except for me to ensure that I'm still eating healthily.

Reality

I must admit that I don't feel totally in reality just yet. I've been in contact with Andy where I asked him roughly how much brain was sucked out when I had my biopsy. His reply was that he'd taken three core samples of 1mm diameter by 10mm depth. Which works out at just under 100 cubic millimetres, I think. I wonder what was in there? I haven't noticed anything missing in my memory, but then, how would I? I wonder how much, in terms of megabytes, that amount of memory reduction works out at. I also wonder what was in there. I just hope they can't read the contents...

I see Andy on Tuesday to get feedback from the results of the biopsy and, as you can imagine, I've not been very good at relaxing in the interim. I'm just hoping that I can postpone the radiotherapy until 2009.

October 10th (Fri)

I've slept much better than I expected over the last few days since I got home. I've had to sleep on the wrong side (i.e. on my left) so that I haven't been sleeping on the scar and the masking tape or whatever has been used to protect the wound. My sleep has involved quite amusing dreams where I've been planning all sorts of events and I've generally woken at about 5:30am. Today I went to my GP where I had the sutures removed. It was relatively painless. As you can see from the picture, the scar is fairly unimpressive. I was a little disappointed as I was hoping to have a large area of my scalp shaved, as I've always looked for an excuse to have a sort-of punk cut.

I see Andy on the 21st for the results of the biopsy. I can only cross my fingers about that.

The company I work for have continued to be unbelievably supportive. When you get personal recommendations about what you're doing sent out to the whole group (and this isn't a small company) from the CEO you can't help but feel pleased. I just hope he's truly understanding how much I appreciate what he's doing.

There are nice people in this world.

Biopsy

October 6th
Arrived at the hospital 20 minutes late. Not that it mattered. I was checked in, like at a hotel and was taken to my room, where I was then left to wait around for an hour or so before anybody came to talk to me about the biopsy. I'm covered by BUPA and so it's a private hospital and a private room. Quite posh it is too.It's in Central London and it even has a balcony. It's a shame the weather's rubbish; it would have been nice to sit outside.

Anyway, I get visited by one of the nurses at about 11:00am and fill in various forms etc and get told that the prep for the op will be at about 6pm. I also go for another MRI scan at 3ish where they stick these circular markers on my forehead and temples. These are opaque to the scanner and are used to create a 3D image of the brain to help Andy aim the drill etc so that he can get the brain samples he wants. After the scans are completed I'm given a CD with the scan images on to give to Andy.

I get visited by Andy at about 5 and we talk through exactly what he's going to do. Then he goes and I get changed into the op gown and slippers and get taken down to the operating theatre on a hospital bed. I meet the anaesthetist who then slides a needle into the top of my left hand. I hardly feel it. And that's the last thing I remember until I come to at about 9pm in the High Dependency Unit. The op's been completed, apparently. They check me for my reactions and grip strength, all of which seem to be fine. I've been catheterised too. Anyway, I'm left in the HDU all night and sleep is not easy. People are wheeled in and out; nurses and doctors are disucssing cases; lights go on and off; there are the inevitable machines that go “ping” and every so often, I'm woken up (if, indeed, I was asleep in the first place) by a nurse calling my name, apologising, then doing tests on me again like shining a torch in my eyes to check that my pupils contract.

Tues 7^th October

Although I've put this as a separate date, yesterday and this day are actually a sort-of blur. In the HDU I think I saw virtually every 20 minutes on the clock and occasionally drifiting off for short time and I'm still here

But the biopsy's been done and apart from a bit of jaw and earache (they have to move some of your jaw muscle out of the way before they drill in), I'm fine. I see Andy and we discuss things and I'll be seeing him again in a couple of weeks to discuss the results and at the end of this week I go to my local GP to get the staples removed from the incision. All very straightforward. I had been anticipating more hair being shaved from my head before the op but there's been very little It just looks like I've got a bit of masking tape on my right temple...

My only problem at the moment is that I can't sleep on my right hand side because that's where the stitches are. Or staples, rather.

Fashion Statement

Well, tomorrow (Monday) is biopsy day and I'm a little nervous. Who wouldn't be? I've told people that I'm getting my brain pierced and I'm not sure whether to get a ring or a stud. I think I've told the same people the same joke more than once. I can get away with that at the moment. I think.

I asked the Neuro why they were doing a biopsy when the MRIs show that the tumour is spreading and that they will be doing radiotherapy. He said that it was just to get a clearer idea of what the glioma is. My wife asked what it would mean if the results of the biopsy were negative. Andy replied that that would mean that they missed. I like Andy's sense of humour...

Someone has suggested that, as part of this op, I should ask for a USB port to be fitted. I said that I'd prefer Bluetooth. The phrase "I know Kung-Fu" sprung to mind too.

Seizure -29th September 2008

Not sure why this one happened...

I was sitting in the office in the early hours of the afternoon, typing away at the keyboard when I suddenly detect the aura of a seizure. I'm not sure if it's passing on not so I start concentrating on it and trying to keep the effects under control (Steady deep breathing and so on). One of my colleagues notices me and asks if I'm alright. I tell him I'm not sure and then I tell him I can feel an aura/seizure coming, and I sit down on the floor. They say they're going to call for an ambulance and I say I'll be fine, I just want to ride it through. I can feel it getting worse but I still don't want to give in. Then the paramedics turn up and assist me to the ambulance. They won't let me walk on my own. I don't remember much after this; I was brought into the hospital and put on a wheelchair. my colleagues fussed around me a little and I just sat there. I don't know whether I was drooling, shaking, talking bollocks or whatever.

The next thing I recall is when I'm assisted onto a hospital bed and have electrode attached to various parts of my body, and a couple of cannula inserted into my arms.

Anyway it's the following day now; I left the hospital at just before 5. Now I'm just very tired and only a little bit hungry.

The Black and Decker beckons...

My biopsy is in 2 weeks time. I'm a little apprehensive but who wouldn't be?

If there are no posts after this one, you'll know that they screwed up the op!

500 Days

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?

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.

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...

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.

Nearly a holiday spoiler

I'm in the office in Mayfair on the 21st July and it's mid-afternoon. The office is always quite stuffy and airless. I start detecting the start of an aura and that's not good. I try to ride it but this time it won't go away and I realise that I have to warn the others in the office. I tell them that I think I'm going to have a seizure and then I sit down on the ground and try and breath rythmically and slowly but it's beating me. Some of the others in the office come over to try and comfort me and one holds my upper arms gently, trying to get me to relax. I can't, and I feel like I'm overheating with people surrounding me. I don't remember a lot of the rest of this but I apparently started giving out instructions (not quite orders), which included soaking me in cold water to cool me down. Someone says that they should call for an ambulance and I say that there's no need, but they call one anyway.

There is more to this story, but most of it is not in my memory. More as it comes...

Insurance and the Lottery

I'm going on holiday next month to Turkey and being the responsible person that I am, I've taken out travel insurance. Only when you have a brain tumour/epilepsy it's not as easy as it should be. A number of insurance companies just laugh and turn you down. Okay - they don't actually laugh but you know what I mean. So I look on the National Epilepsy Society website http://www.epilepsynse.org.uk/PAGES/info/leaflets/travelinsurance.cfm and try some of the insurance companies they suggest. One or two (no names) say that unfortunately, on their points system, they're unable to cover me. I end up getting insurance that covers the family but excludes cover for me for anything to do with my condition. Apart from that, the cover comes to £30. Bargain.

So I think - well, that's that. The chances of me having anything worse than a seizure are extremely low and our UK health insurance covers any costs if I have to be hospitalised, so that's that.

Only my wife won't have it. She wants me to be fully covered. "What if I have to be repatriated?" She asks. "What if you die?" Well, I won't go into the discussion that went on except to say that the odds of that happening were extremely low. I checked and found that the insurance premium just for me is £240. Yes, £240. I said that given the comparative odds, I'd rather buy 240 lottery tickets.

I lost the argument.

240 quid! How much beer is that?