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.

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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.

Revolver

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.

Searchlight

I’m a bit woozier and it is getting harder to walk properly. It’s like there isn’t any or indeed the right amount of energy getting into my leg, which is spreading to the left also and causing a lot more work to do. The chewable tablets and the weekly one don’t seem to be having any effect whatsoever with making my bones stronger, but the weekly one was only a few hours ago and unlikely to do anything too noticable yet….

The chemo tablets will start up next week again, and I presume the same cycle will start again. It’s feeling a little futile taking them, and them dishing them out, with both parties ķnowing a rough date; there will be arguements that they still have to treat all eventualitities but I’ll keep them going to please everyone.

Rucksack

Everything is worse than it was even yesterday; it could be the unpredictable effects of the chemo tablets kicking in, but moving etc is getting harder and the pain is worse. I’m finding the numbness in my hand is the worst though- the gripping of anything is getting ridiculous, but once again, it’ll probably be put down to nothing. As long as I can wing it over the weekend at East Kirkby, I’ll be glad; it’s a year wait until the next one and at this rate it hardly looks like that’s a possibility.

I’m sure I’ll come across as arsey with Dr. Spooner at Tuesday’s clinic, demanding answers but it needs to be done, I’ve waited long enough and of all people, he should be able to realise why.

Skeleton on display

I’m getting snappier. It could be the heat, it could be my time of the month, it could be all the labels that get thrown this way or what’s going on in my head. The highest chance is it’s everything combined, but it’s not getting more tolerable for anyone; I’m getting more and more frustrated with every aspect of life as each second ticks on and I’m pretty sure that will start to show with everyone soon enough and drive them away, if it hasn’t already.

No more chemo tablets now until June. When they initially said it was a six month thing, it sounded like ages; I would be on the course of tablets, happily plodding along to work and being able to do things at my leisure with some pill popping of the evening to mix it up. No such luck…I’m languishing in limbo, unable to get to work and we’re coming to the six month threshold. Chances are they will keep it going for a year if they don’t end it soon, but there had best be some answers soon.

Before

As expected, the chemo tablets are knocking me around a bit, less predictable that it’s so soon into the course, but it was going to happen. How long for and what I feel will have to be seen though and strangely enough, there’s only me that will know what I’ll be capable of each day.

The MRI is booked for Sunday morning, as a ‘urgent’ scan, so at least there is scope for some sort of answer as to the pain; if it’s anything drastic, I’m sure something will be said, but chances are nothing will be and yet again I’ll be stuck wondering what to do next….

Pudge

The steroids have been stepped up from one tablet a day to three in an attempt to control some of the co-ordination and woozines issues. Whether there are any results or improvements from it, I’m just going to have to see.

A mix of steroids, anti-sickness for chemo, general anti-sickness, anti-biotics for my chest, painkillers and chemo tablets are now filling most of the worktop; I’ve no idea what all of those combined will do to me as it’s unpredictable enough just on the chemo ones how I will be, so I could be in for a treat.

When I mentioned the head pain increasing so much, Dr. Spooner started arranging a MRI scan, which is a lot earlier than the next one should be and the next clinic appointment is in a fortnight, rather than a month, so some progress could be on the cards. I guess the scan will be done before then, otherwise it’s a bit pointless.

At least I’m a little closer to some sort of answer…I could know in a fortnight a lot more than I do now about the possibility of a future…for what it’s worth.

Reception

There will always be those people in our inner sanctum, whether they get there because they intend to or not…but they are there. Only a handful ever get there in your life and you know who they are, even if they don’t know it themselves; they are naturally part of you. Some are always destined to be close but never quite at ‘that’ level and some will very much always teeter on the edge. Then there are some that will forget that you ever exist because they have things in their life that take priority, which happens; be it work, new partner or plain ignorance.

It seems as though the weekend has finally caught up with me and coincidentally I’ve run out of anti-sickness tablets too. It’s only a week until the clinic appointment and as I’ll be getting the chemo tablets then anyway, I might as well just wait and get them in one swoop, they don’t decrease the nauseous feelings all the time anyway, so chances are I won’t even notice them missing.

The whole ‘it’s stabilised’ description still isn’t ringing true with me though; that may be what they’re seeing on paper, but it’s not what I’m feeling. I’ve said it before, but I just need some sort of clear prognosis, a timespan, just anything to give me some end to it all. I can’t put on the less than convincing act for much longer- it wears me out.

Case

The frustration and anger isn’t easing off. I know it all stems from my own mindset and there’s only me that can change it, but it’s not as easy as flicking a switch and suddenly not feeling the way I do. It angers me at what others have and fail to realise it, it angers me at how little purpose I have; everyone and everything is moving on and I’m stuck in limbo, full of pain and uncertainty.

I’m 28 for now and I’ve acheived nothing and until this situation is sorted one way or the other, there’s no chance of that changing. If the rumoured year long chemo plan continues having the same external effects as they have done so far then there isn’t any point in anything; I can’t put up with living, well, existing, like it for too much more. All I can do is let them get on with it and wish for an ending to it…..