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.

They look like one cat :-)

I'm online on my phone now

.....so I can bitch & a moan where ever I am.
Latest & 1 bit of news, have 2 lovely cats called sox & slippers. Will try & keep more up to date on my blog now

I'm still here ........

.........Just :-)
Just in case anyone was thinking I had popped my clogs!!
Insensitive thing to say I know, but hey ho!

I think my posts are going to be short & sweet from now on. I don't have the energy to go on my computer and type long posts any more.
I spend a lot of my days tired and using all of my energy on getting through my day. Lots of my energy is focused on Jamie.
I think I pretty much got most of my shit off my chest in the first year or so anyway!!

It gets easier.......

.......does it really!?
The saying's are 'time is a great healer' 'it gets easier with time'

When people say to you 'it will get easier'
I don't think it gets easier, I think it just gets different.

The loss of a life, love, money what ever it is. It doesn't get easier, just different!!
I think that's what its become for me 'just different'

Home Help no.2

A lot has happened since my last post, we'll in my world it has. Or maybe it hasn't really!! anyway,
On my 2nd home helper now. 1st one was brilliant but got head hunted for another/better job. Very sad she left, cried a lot (sounds dramatic I know) I was absolutely gutted and hated her for a week and keep saying to her how devastated I was. I got over it a bit and forgave her.
She is lovely and worked 4weeks notice when she only really had to give us 1 week, she didn't have to give us any more than that.
We became friends over the 3mnths she was with us, so will hopefully see each other now & again.

I don't think people realise what a home help means, not just to the elderly, disabled or even people with social and learning difficulties but for people like ME!! (who are people like me anyway?, the 'odd's'!!)

A home helper isn't just there to do a job! they become part of your families life. They become part of your life, they become your friend, your companion, your support, your freedom/independance!....basically everything in your daily life. Its so so hard to
a) get used to the idea of that in the first place.
b) find the right person (takes a very kind, caring & dedicated person)
c) trust someone, let your guard down and be yourself. TRUST.

Without a home help I would be 'fucked' I basically wouldn't be able to do anything, due to the risks to me & Jamie. It is NEVER worth putting my Jamie at risk.