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.

The waiting is the hardest part…..

I’m on a break from the chemo tablets now until at least mid-January and while they didn’t give me any side effects as such, the grogginess and I suppose some tiredness can be attributed to them. If they have done some good, then it will have been worth it, I guess. If they haven’t….well, it’s a bit tough.

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Radiotheraphy is, as far as current descisions go, ended. There hasn’t been any talk of another course, but I guess it can never be ruled out as they only really have 3 options; chemo, radio and doing nowt. So this will be my how waiting in treatment room 11 will be remembered all of those delightfully early mornings…
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Pleasingly and also testament to what a lovely bunch they were, the radiograhphers let me keep my mask. It’s not like it would fit anyone else I suppose but that’s not the point. When I get hooks big enough, it will be going on the wall; as a kind of survival trophy or morbid ornament.

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As they are dealing with it day in day out, and used to the cycle, the radiographers were pretty spot on with predicting which week I would notice different changes. This week they didn’t bring up, which was best for everyone, as up to last night it was the groggiest, most drained I have been so far. It could just have been a final interaction between everything inside my head, but it was a welcome relief this morning for things to be slighty normal. Minute joint pains, wobbliness and moon face are preferable to a head that’s going to explode.

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.

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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.

Behind the mask…

I know everyone moans, and it may be the case for routine check ups, but I’m yet, in this situation so far, to see the NHS taking their time. Kudos is deserved.

It was more like a slightly warm towel to start with, which cooled quickly and 10 mins later, all was formed. A far cry from the 3 hour goo they had to do last time…. see

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Of course I got scanned too, just a CT, which I’m guessing is just to make sure they have the right settings for me. We don’t start until 12th November, so loads of time to come up with questions. That said, what’s to ask!?

As a precaution, they have stored my future little me’s. It may be for no reason and everything could be fine, but for the sake of wanking in a pot, there’s no harm.

They have tested already (less than 2 hours!!) and it’s an ‘excellent sample’, so rest assured, human race, you are safe.

That in depth, so early, good job I napped

The first real taking up someone on their offer of appointment taking to lessen the burden on the parents is complete! An early (715) trip with Bridget across Brum!

It wasn’t until I got to the MRI scanner that it was mentioned that it was a more in depth, longer one….how long says I…oh, between an hour and hour and a half. It’s a good job she’s a Candy Crush user- I don’t know how she would have coped otherwise!! 

Remote dye was done through a cannula, which I think could be my first time, no idea how much was pumped in over the hour-ish, or indeed how long it was exactly, I’d nodded off after a bit, it’s just so damn melodic.

I can only assume that they are using the ‘extra detail’ gained from them to plot more of a course of action- but they will do that in due time; it’s only been a few hours and the mask fun begins in the morning…..

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,

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Next Wednesday I will be getting fitted with my new radiotherapy mask- which is all very exciting as the last one I had was a plaster of paris kinda thing- this one looks to be a mesh placed over my head. Let’s see how that ends up, at least it can’t not fit!

So hungry though. The tablets say they can will affect the appetite, but I was expecting it to go the other way; not make me eat more.