Tango

‘Months rather than years’ is a phrase I’ll be hearing a lot; it’s the default answer they will be able to give in terms of my prognosis. I keep asking them as I need to know.

The bleed isn’t doing much but the tumour is growing, so that’s why I’m getting worse. The leg, arm and pain received are the main things that get the brunt of everything; but I’m used to how things are, it would be strange if I felt normal again.

It’s getting harder to walk and I’ve started to use a chair…..well, get pushed around. It’s one of the final stages as it admits defeat to my  physical side; I just can’t manage more than a few hundred metres without having to stop or rest. I know it’s the best way, but it’s still a long way off where I should be.

Office

It’s too hard to walk anywhere anymore; sitting down takes the pain from the legs but it’s always in my head. I don’t know whether it’s the tumour or the bleed that causes it, but I suppose it’s not too long before I find out. Hopefully all of my questions get answered…and prognosis is one of them…

I’ve a chair. The first time I have to use it in public is going to be hell; too much ‘look at me’; no-one will be saying it, but they will be thinking it. If it’s said I won’t be sure how I’m going to react..it’s been a while and there’s a hell of a lot building inside of me.

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.

Highway

Ever since the news on Tuesday, everything seems to have got worse; head, leg, arm- the normal. It might just be another coincidence or it might be my body realising that it’s pointless fighting anything anymore.

The morphine is such a small amount it’s surprising it does anything; but there’s a little restbite with it…or it could be something to do with the cocktail of other tablets they’ve put me on. The bone strengthening  one is being saved until Monday morning;  mainly due to it being so strong and there’s more than a chance that I’m going to be knocked off my feet for at least the duration of the day.

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.

Invitation

No phonecalls from the hospital so far; so it’s either in the hands of another department or no news at all. Hopefully it’s the former and they are just working out the best way to say ‘don’t try anymore, it’s pointless’. I could call and find out, but after waiting for the best part of eight months for answers, an extra week is nothing…plus it gives something to look forward to; everyone likes news. They just have to ask. Or look.

No doubt there will be some reason they won’t give a timespan for my mortality on Tuesday; yet I feel after this length of time on various treatments and the increase in pain since before they last scanned (early April), which Dr. Spooner is aware of, that there needs to be some sort of date or something to give me even a glimpse of what to do. If anything, it’s getting harder to do the simple things- even in the past week co-ordination and reaching for stuff has been a little trickier than it has been. I can’t keep acting like it’s not getting too much to go on…there’s only so much pretending to want to ‘fight’ it I can do. Come next week; unless it’s something groundbreaking, the ‘battle’ is all yours, Clive.

Thud

A chesty cough came over the weekend..it seemed to fade a bit today, but I guess it’s worth them prescribing something if they can or want to in the morning; it’s not like I won’t have to go to the pharmacy anyway so it’s no difference to me.

Some answers will be good tomorrow. I daresay what is seen as ‘good’ will depend on who you are…some will be holding out for me to report back with one thing and others another.  Personally, all I want is a timespan; something to plan towards and have some sort of (as much as they can) expectation of where I’m heading and when. It’s getting too much to put up with it all from day to day; there’s only so much pain and drowsiness I can take.

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.

Downpour

Over the past week or so it seems as if the sleep issues from months ago are back. It’s about 5 that I’m awake, and can’t get back to sleep at all…so I end up getting up after trying…which if I can’t get a nap during the day to combat the tired feeling, things feel even worse.

There’s no change with the head pain; if anything it’s getting slighty worse as each day goes by and on both sides. It may be nothing, but it’s only a few weeks until I can report it to Dr. Spooner and maybe we can see if there’s something stirring……

It seems like the SSP has run out, which wasn’t, of course, near full wages at all, but it helped. If it’s a definite end to it, it’s going to be putting yet another mark in the ‘is there any point to anything’ column, which is growing quite rapidly and far outweighing the reasons why I feel like I should bother carrying on.

Footprints

Groggy & woozy feelings were, as expected, all over the place this week and as ever, there’s no way of predicting how each day will differ from the previous….if at all. It’s all well and good Clive’s growth being classed as ‘stable’ on paper, but it’s not improving things on the practical side; there’s more than enough pain rattling round my head and it doesn’t seem like the Solpadol is giving the same benefits from the first time. The next clinic appointment is nearly three weeks away, so maybe I can get something stronger then. Or not bother and carry on with how it will more than likely be anyway….