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.