Milk

My leg isn’t getting any better; all the way around Tretham I was stopping. It could have been the heat but there’s more chance of it being Clive or bleed related. My head has been constantly hurting at the back, which is neither Clive nor bleed location so it could just be dehydration. I’m drinking more to compensate but it doesn’t seem to have any effect.

The letter from Toogood to the Dr’s goes on about talking to someone, which as I said to him, it’s not something worth doing. What’s the point? They know I haven’t got long and I know I haven’t got long, it’s just a matter of knowing roughly when.

Within the next few weeks I will be nearer getting things sorted for the auction; hopefully it will have some lasting effect after I’ve gone, but it would be nice to get a good amount before I do. And if one fucking person calls me ‘inspirational’, I’ll fucking kill them; I hate that word for so many reasons.

Moonage

I’ve spilt Morphine leaving me with just enough to tide me over, it leaves a terrible smell, but it’s my own doing. It’s only for pain relief and if worst comes to worse, I’ve got some Solpadol as backup…both of which I can stock up on when in clinic.

I can’t see the point in the late effects appointment at all; what’s the point talking about Fred when Clive is their main point of interest? Well, Clive and the bleed, but again, I won’t know anything until the day after what’s happening with that, so a bit of a pointless appointment. It might be the last one though and once it’s done it’s out of the way and who knows, I might get some answers from it….

Getting things sorted for the auction might give me more of a focus; I’ve been getting bits and bobs for it and it seems as though Tony has been doing a lot behind the scenes too. It should raise a lot of money and at least some, if not lots, of awareness.

My leg has been all over the place this morning. It’s been less responsive and like a useless appendage for a while now, but this morning, there was a hell of a lot of pain, mostly in the right side. It could be anything causing it and it seems to be easing off a little now, but if it’s like that every day, it’s another tick in the other column.

Mechanical

From the most recent MRI, they have found a 4mm ‘bleed’. It’s not doing anything but it goes some way to explaining the symptoms I’ve been having that can’t be blamed on steroids or Clive. A further MRI is being booked for the immediate future but that could be anytime.

I’m not sure whether it was the delay in taking them yesterday that caused it, but the tablet cocktail caught me off guard this morning;the first time I’ve had to throw up in years. It’s knocked me for six and is making me more woozy than normal, not to mention the slight nausea still knocking around.

I’m keeping flowers in full bloom….

It’s a Monday that they have their neurosurgeon meeting to discuss all the different cases that need a little more talking about than normal, so next week, they should be bringing up my situation and why the symptoms are worse yet the scans showed no growth at all.

They are still treating Clive as a grade 4 glioma, which I wasn’t expecting them to do any different as they have been doing it for the past 8 months.

I finally asked. The expectancy of life from grade 4’s is about 18 months from diagnosation. As in theory I’ve already had 8 months of limbo so far, there’s less than a year left for me to keep going; if it’s being taken as to the letter, we could be looking at March, but it would be good to at least get to May…round figures and all that.

Part of me looks around and wonders why, part of me laughs and part of me cries, but it’s a nice feeling to know that I have a ballpark timespan rather than the constant guessing I’ve had.

Hovercraft

It’s still the best part of a fortnight until the clinic appointment so even more waiting for any form of answer. As it may be common knowledge, the reverse way the brain works dictates that stuff happening on the left side of it will be affecting the right side’s functionality, which is fine, except in the past week or so, there’s been almost a tightening feeling to the back of my head. Chances are it’s just something else, like the pains on the left side, that will just get brushed aside and put down to the pressure change of Clive’s shape/size/position.

Face

While the scan and appointment being on the same day is more conveinent, it’s still over a week away and it doesn’t feel like the results are going to be as positive as last time; my heads been hurting as much as it did back in October/November, my hands been less responsive and the numbness seems to get be getting worse, plus my walking leaves a lot to be desired still.

As Clive has showed to shrink between previous scans, all signs should point to improvements this time, but from how I’ve been feeling this past month or so, I wouldn’t be surprised if there was growth or some internal development going on…

Oh, that might have something to do with it…

Most of what was asked; the slight nausea, wobbliness and paranoid feelings of bodily stench were pretty much wiped away with it being all fairly standard and nothing to worry about, which was the result I was expecting, so I guess that works out ok. No real solutions were suggested for the waking up at all hours and going to the toilet, apart from not drinking past 8pm, which is one of the stupidest ideas I’ve heard for ages, and clearly it wasn’t something Dr Spooner would come up with…I guess he’s one of his underlings, but he opened up stuff on the computer, this Dr Aslam, which I wasn’t expecting him to do. Maybe he shouldn’t have, but a mini breakdown of the extended MRI scan from a few weeks back answered one question….basically, from the scan performed in September to the one in mid October, Clive has grown by about 0.4cm. Apparantly he was only 2cms to start with, so quite the mover, it would seem….

The worktop is again full of medication, there’s still space for the kettle so not all hope is lost just yet.

image

It’s a merry cocktail of anti-sickness ones to combat any possible side effects, some stronger ones for a few days, steroids, the chemo ones and some paracetemol for headaches…yeah, like that’s an issue.

Early morning wiki…

It was always going to happen, no idea while it took me until now, but the truth is out. Obviously I’ve Googled and Wikipediad about Clive, his type and all of the fun, life zapping qualities he has, but it turns out that his location, the thalamus, not only regulates movement, hence my wobbliness some of the time, but also consciousness, sleep and alertness. So at least I know that my sleep pattern will be fairly shit consistently, with a few hours here and there until either this story finishes or I do.

Man in the mirror

I thought they might supress my appetite, but it seems like the combination of tablets make me want to eat and eat. Hell, I was hoping to get something positive out of all this…at this rate we’ll need a bigger box. Ok, it could be there’s more food here and it’s easier to munch away, but catching myself in the mirror…

Of course, people have said this is good and filling me with energy etc (first time in years!) and well, if there’s an excuse for biscuits and chocolate, I guess I can carry on like it for now- Cadbury’s might as well get their money out of me while they can!!

The witching hour does seem to be 0500 with drifting off until anti-sickness tablet time, so it might all add up to some kind of normal kind of sleep pattern timing. Weirdly, apart from a few very mini naps in the day, I don’t seem as tired as I would pre-Clive…sounds like a question for another day.

Carol from MacMillan/CAB confirmed they had had the form from Fred, so I guess the PIP will have got theirs too (I’m sure he said he was sending one each). She’s processing that now I guess…with lots of red pens and a big black marker.