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.

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.

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.

Don’t bury me, ’cause I’m not dead…yet…

I got asked the other night about whether I had thought about any funeral plans and quite oddly, it’s not something that has crossed my mind yet….which in itself is a bit of a mystery why not really, over the years, I’ve been to dark places and more than considered it before,
but it’s never come to fruition, yet here we are, potentially staring it in the face….

It could be just being plain stubborn over the whole situation, as it’s still not fully sinking in about the whole thing; I know what’s happening, what’s going on and how everyone else is taking and understanding things, but for some reason it’s not getting properly through to me. It’s not denying what will happen or being overly confident in what the treatment will acheive, just a lack of, well, something…

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.

Future works

I thought by going to bed at a later hour might give me a chance of a difference in sleep, but no such luck, so it’s going to be a case of sticking to the normal midnight as clearly it makes no difference at all. I’m hoping they can prescribe something for the broken sleep issue, but I can see why if they don’t; I’ll be rattling about a fair bit as it will be and there’s only so much they can fill me with.

The PIP claim has been recieved by whichever department needs it on the 1st, apparantly, so they think by the end of the week something will have happened with that. I suppose I can accept what it’s about now…I’m basically having my pension early as there’s not much chance of getting it at the conventional age.

Tonight is the last chemo free night for a while, the course will start up again once they get prescribed in the morning, and that’s it for at least the length of the radiotheraphy course too, so a minimum of 6 weeks, I assume….

Blue

It will only be the steroids that carry on during the ‘transition’ week, seems soft to keep chucking back the anti-sickness as well, so they have decided that we will axe them on Sunday night too. I’ve not noticed them do anything to be fair, but like so much, it’s a precaution.

Sleep still eludes me, a few hours here and there is beginning to get more than annoying, although, if that’s linked to the chemo treatment-next week could be full of sweet dreams about lands full of hope and happiness….

Although the only point I can’t let slip is that Fred commented on ‘how quick I’d been put on tablets etc’, I don’t recall hearing this first hand, but why would this surprise him? Surely he would deal with similar cases every day….unless they are really clutching at straws to see if anything works?

Do I really want to know?

Well, this will be the first ‘post news’ appointment, so it will be different. It’s not like he can give me a bigger bombshell than last week, but let’s see about that.
Yes, it’s a bit morbid of me to want to know the grade, and therefore how long I might be knocking around this life for, but I think it’s only fair that I do. Probably won’t tell many people that answer, just keep it bolted up inside of me; that’s how I do life,