Things are starting to appear or people saying yes to giving something for the’s mostly just vouchers and tickets so far, but everything will create some money for the fund. That’s all we can aim for.

It’s pointless carrying on with the tablets; I still will and I’ll get more each and every time I go to clinic, to show willing and keep the act up, but they don’t seem to be doing anything. The head pain doesn’t go with the morphine, the leg pain is intermittent anyway and everything else is getting worse. I’m just about coping with it if it carries on as it is, but if it gets much more, things will have to change.

Measured in months only….

I’ve come to the conclusion, mainly through medical reasoning, that I’m not going to get better at all. There’s no chance of changing, no chance of anything apart from an unsteady decline until I bite the bullet.

The chemo tablets seem to be doing something; not internally as the pain is still there, but there does appear to be a little bit of give in the leg area…but that might be a coincidence as the full quota of tablets is once again in place.

I still don’t know when and it’s driving me mad. They say months but can’t give an accurate timespan..I hope it hurries up as I can’t do this any more.

Black square

Clive has stayed at a stable level, with no growth or development that they have reported. The bleed is growing and is the cause of the symptoms getting worse as each day goes on. It’s completely seperate from the tumour and operating of it’s own free will.

They’ve changed the chemo tablets to focus more on the bleed, which are only 40mg and 4 days instead of 5. Quite whether they will do anything is down to their thinking as I know it’s not likely to have much affect at all; it doesn’t seem like an intermittent course of Lomustine will change things at all.


Every day varies from feeling crap to feeling crappier; there’s nothing I can do about it as it’s not controlled by me. It’s not a case of fighting it or winning the battle, it’s going to happen; we know I’m not here for too much longer so it’s pointless trying to pretend otherwise.

It’s getting a bit much having to put on the act all of the time though, no one except me knows how I am, how I’m feeling and what I want to do. It’s nice that the four walls are being broken out of, but sometimes it has to be forced to show willing. I’ve never been the kind of person to let anyone down, but it’s time to start; the saying no, being me, at least for however long I’m here for.


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.


I can’t force anything anymore, I can’t find energy that isn’t there. It could be the stages of me giving up or it could be the tablet/bleed combination, but everything is more of an effort to do; simple walking and carrying is getting harder and there’s nothing that can be done.

20 years

This is getting more pointless by the day; we all know that there is no light at the end of the tunnel, no quick fix or any way of me coming out of this at all. Everyone knows it, but it’s taking a while to sink in for most, that each time they see me, if they want to, it could be the last.

No one knows how long it will be exactly, not even Dr. Spooner, so it’s very much still a waiting game, just there’s a rough estimation but not anything as precise as the day/week. I could do with something a bit more detailed to see whether I can be bothered lasting that long…if the next seven months (approx) have been anything like the past few have been, I may be giving up well before then.


Another course of chemo is over and once again there are no external improvements…which isn’t exactly a surprise but after all this time of it being done and apparantly proven to work, I was expecting more. If anything, things are declining; it’s getting harder to walk, especially up stairs and a lot harder to use my right side to pretty much do anything other than just being there.

It’s not going to change at all in the coming months, I can see things getting a lot worse and there’s nothing I can do about it. The tablet cocktail I take every day seems to be having little or no effect on me and that appears to be their main course of action as of now….but I’ll keep on with them to show willing.


Is anything worth anything anymore? I’ve spent my time so far trying not to be the fat one; trying to control it and where has it got me? I’ve ballooned recently, with steroids getting the blame and it’s showing no signs of improving. There’s no point in trying to anymore, it’s  not worth being anything as it’s all for nothing; what’s the point when it’s all crumbling?

No throwing up this morning, so it can’t be a tablet mix that caused it yesterday…so I’m putting it down to a one off freak occourence. It left me feeling a bit woozy, but I don’t know what actually came up; it could be bile, tablets, a mix or something else. More nausea keeps coming though and there’s plenty of head pain that comes with it…it doesn’t feel like the morphine is doing anything anymore either.


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.