During treatement (day 2 of 30)

This is what happens. Lee is going to type the commentary to the video. So you know all the bits.
I am just really scared about having a seizure in the mask, can you imagine!!?! what a fucking nightmare. That's why they have the tv's to watch me! and Lee keeps a close eye on me too. So if I have a seizure they can be in there asap.
If it looks like I am pinned to the bed by a freaky looking mask, then that's what it is.....TRUE as.
I said to Lee the whole thing is pissing me off already!! oh and I've got my own self check in card now.... how exciting.

Radiotherapy Treatment



Its me, Lee, the chief cameraman.

The video starts with Jane getting onto the treatment table. Her head rests at an angle so that one of the radiation beams can pass from back to front without damaging her eyes. Her mask is then pushed down onto her face and clipped in. Its very tight but can be removed very quickly if it needs to be.

When the room goes dark a number of green lasers are turned on and adjustments are made to the position of Jane's head so that it's in exactly the right position for the treatment. We all then leave Jane alone in the room, the last person pressing a button on the way out and then a second button when we get to the control desk. The alarm is the warning to leave the room before the radiation comes on.

At the control desk the two specialists read out treatment doses and double check them before starting the treatment. Each dose requires a turning of a key on the desk and the pressing of a separate button. The two cameras that are pointed at Jane enable me to spot if Jane is starting to have a seizure. In the picture you can see the radiotherapy machine moving to each location to fire the radiation in the right area. The actual treatment is happening when the black square on the machine next to Jane's head is rotating. The actual treatment only takes around 3 minutes once Jane is secured correctly.

Day 1 of 30

Before


During: We weren't allowed to film until we got permission.
Got that now, so will commence filming tomorrow instead.

After


Bit sniffy in these......Sorry to all the sniffy haters I know!!!
I look well tired and rough as fuck and that's before it's all begun, oh well!!!. Maybe I'll come out the other side looking stunning.

1 day down 29 to go.........yeh

Mask & CT Scan (video 3)

The planning appointment (video 2)

I just realised i laugh a lot on these
Videos. Might get on ya tits a bit, but hey ho!!

Befofe my treatment starts (video 1)

Hello my sweets

The appointment.........

The mask appointment came through they call it the "planning appointment" dun dun duuun.
It's this Friday

New drug & update

Yes another one! It's a new one, only just out this year it's called retigabine. So far it's okay.

I get really dizzy, slurry and "wonky" just after taking it, but that seems to settle down after an hour or so. The struggle to find the right words & making mistakes with what I'm saying, is there all the time. Side effects, gotta love em.
Anyway I'm on 3 again now, so hard to tell if it's just the new drug's side effects or just a side effect of the new med cocktail I'm on. Maybe once I'm on full whack of retigabine and off epilim It may be better. But that's if I can tolerate side effects to get that far.

1. Keppra
2. Carbamazapine
3. Lamotrigine
4. Oxcarbazine
5. Topiramate
6. Phenytion
7. Clobazam
8. Zonisamide
9. Epilim
10. Retigabine
    

The mask!

The latest is I'm going to have radiotherapy in the new year.
Not because there has been a progression or I've got the dreaded "c" word. It's in an attempt to control my seizures. My mdt agree that after trying 10 different aed's it's time to try something else. So thats the plan. Me & lee totally agree and we actually suggested it in the first place. We feel like we've been treading water with it all for 3 yrs. Side effects verses seizures for fucking 3 yrs now enough enough I've had a fucking enough already.
I think I've had a good go and I think thats why they are agreeing on this option for me.
The oncologist told us there is a 50/50 chance it will make any difference to my seizures. But hey it's not gonna make em worse so fuck it why not? I know it's gonna make me really ill for most of the year, but it's better than treading water for another 3yrs.
It's the mask I'm dreading at the moment and having that moulded & made for my face ready to start my treatment. I'm not claustrophobic....well I don't think I am! It's just the thought of having something over my face when I'm not sure how they will do it or how it will fit/sit. It's just the not knowing I think.
Losing bits of my hair is a whole other story.