Sweets

The hospital visit didn’t do it for it medically, if anything it’s made it worse; more leg, head and overall pain, but I know that’s going to keep getting worse until the final days. And even then, it will be gradual, piece by piece until there’s no more.

I asked Dr Spooner a ballpark figure of which he gave one. 6 months. He’s since cut that to 3 months, leaving the 1st December as ‘the date’ but as no-one can judge these things it could be longer/shorter than they say.

You

The auction night appeared to bring people together, some who wouldn’t be talking were and conversations happened; I like to think that through the awareness and money for the charity that I have helped that water flow under the bridge or at least been the strange glue I’ve been this past year.

A total will be to follow. I don’t know what I will be doing now I haven’t got anything like that to focus on and that’s probably a good thing…the abseil and twilight walk is out of my hands, as is the skydive, so it’s kinda fitting.

Tablets are the same; steroids have been leaving marks for the past 6 months or so but Dr Spooner thinks they are ok so he’s bumped those up to 8mg a morning and the monthly chemo are still there, but everything else has stayed as it is.

Symptoms are getting worse, most noteably in the right leg…it’s working on about 45% of what it should be, if that, I can barely walk unless I’m familiar or have support I fall, so I’m limiting the amount I do.

It’s been noticed by Dr Spooner that I’m getting worse, which is a good thing, most consultants would glaze over it. He’s sending out a chase for the scan, a dermatologist for my feet and legs and a pallative nurse to see how I am. Whether this happens is another thing, but it looks like something happens. They have shaved 3 months off lift off, so he has reluctantly said Christmas time….I hope it’s a bit of way off that time of year as so many have so much going on, but I can’t help it and I won’t be here to find out……

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.

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.

Albatross

It would appear that I could be having some kind of progress with the walking…for the second day, it has been a hell of a lot easier to manoeuvre myself, by no means normally, but it seems like the signal from my brain just gets to my leg quicker and functions a little better. There’s still wobblyness and degrees of unsteadyness too, but for the time being, we seem to be getting somewhere.

Dr Spooner seemed pleased and almost surprised with the walking thing and the xray on my chest last week was completely clear, so as predicted, it’s just a normal wintery chesty cough, but as they have aleeady given me yet more medication for that, so I should shake it off at some point.

Everywhere

Once again, zapping was a simple process of lying there and doing nothing for ten minutes, plus the clinic appointment afterwards was with Dr Spooner himself. All that came from it was an xray that will be done tomorrow just to make sure my chest isn’t doing anything too odd and a prescription for some antibiotics and cough mixture to ease it. As it’s only to be taken three times a week, on Monday, Wednesday and Friday, I couldn’t see the point fetching it today and it’s not like there won’t be time before the xray to do so.

People will carry on amazing me with their kindness and willingness to put themselves out for me; parents especially, but so far, Kerry and Alan with their very early morning trips across Birmingham have been brilliant. Laura’s trip from Surrey today to partake in the fun of the QE was a tiring but great way to catch up, with little walks around the Mac duck pond & the Arbouretum, plus a feast in Frankie & Benny’s rounding off the day was an excellent way to spend a Tuesday and should make me sleep fairly well, I hope!

No change…

The cough is still there, but seems to come and go- chances are it’s weather related but I’ll double check with Spooner/Aslam in the morning. Lemsip or something of that ilk will probably be ok to take but for the sake of a day, it’s no hardship to wait to find out for sure. It didn’t get in the way of the radiotheraphy earlier so it’s barely worth getting too bothered by.

As with all the zappings this week, bar Tuesday’s, they are all early appointments so once again, sleep is broken up to a few hours here and there so far, I expect the rest of the week will follow suit; I’m resigned to it now though…one of these days I’ll get all the sleep I’m owed.

The list…

It seems to come and go, but there’s an odd pain in my left knee, it’s probably just been slept on or something, but after all, I’ve only got to wait until Tuesday before I can hopefully get more answers to everything. There’s bound to be a lot that Dr. Spooner can’t or won’t answer, but like so much at the moment, I’m just going to have to see.

If I’m still going, it seems like, apart from a few extra cards, the list will just be copied from last year though. That suits me down to the ground though, at least it proves how much dead wood has been dropped over the years, and for the right reasons. More to the point, those people have been there over the past month or so, and will hopefully be there for the upcoming months in the same way. Although it might not be just for me…if I’m not here, it’s going to make that wrapping tricky to do.

Some answers

A much shorter appointment with Dr Spooner today, there’s not a lot he could add, so made sense. Pretty much a making sure I was alive, no reactions and a little chat.

The tightness and slight discomfort in my stomach questions were, as predicted, nothing, but at least he’s aware should it do anything really drastic.

I couldn’t help but ask about the type and grade of Clive, it’s my head after all! It is a glioma and currently they are classing it as a grade 4. Yeah, the highest grade.Whoop. He did say that that’s what they are doing for now, and I have no idea if they downgrade this kinda thing at different points.

In a nutshell, I’m non the wiser as to how long there is.

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,