Gutted!!

Got to thinking about tumour shit (again), coz of what Julia is going through at the moment.
Even though I'm reminded of having a brain tumour every day and have excepted its gonna kill me and I'm gonna die.
Sometimes it's just sitting there in the back of my mind, it doesn't fill my every thought of every day and I do often think things like 'I might not see Jamie's first day at school' etc etc
But I also think the dying, getting worse, growing thing won't be sort of happening for a few years yet. I don't mean silly amount of years! but maybe like 3yrs at the earliest!!

But what's has made me re think about it all this week is a couple of things really.
Lee's boss called him in for a meeting to discuss shifts etc as they have been accommodating Lee at work since my diagnosis. His boss asked Lee "where do you see yourself in 2 yrs time" (I think that is a really fucking stupid question) and Lee said amongst other things "I can't see past 2 months and it would depended on how ill Jane was and whether she was still here or not".
Also and I'm sure Julia won't mind me saying!? she was only diagnosed 6 months before me with exactly the same type of tumour! and for both of us the best scan results we can receive is 'no change' and Julia's results this time around showed 'change'.

So these things have made me re-realise the time scale I've got (2-15yrs) I think someone has lived 25yrs or something like that! but he was extremely lucky and as we know, that is defiantly not me (lucky). Anyway you sort of hope your somewhere in the middle and I thought 'yeah that sounds about right' and I think I sort of settled on the idea of round about 5-10yrs ish, if I made it to 10yrs I'd be well chuffed :-) Can you imagine me being 40? I had written that off already, coz i didn't think I'd make it. So haven't even imagined what I'd do for my 40th. I am a random one!!!
So to think it all might come to an end in the next couple of years.....GUTTED!! but then I knew that might be the case already really. Its just this week I've been reminded of it.

Me and my boys are on our hols for a week. It always pisses it down when we go away!!!
See you when we get back.

Oh and hopefully I will back on here a bit more now.

Who was I kidding??

Not positive on Friday! who was I kidding to think otherwise? I should go to the hospital expecting crappy news.
Consultant basically said that I will always have my seizures whatever medication I take and the best I can hope for is mild seizures that are less frequent. Best case, 6 months without a seizure! which means ALWAYS having these shitty seizures and NEVER being able to drive again.
WHY? is this the case you may ask????
well, she explained that people with abnormalities on their brains e.g brain tumours rarely achieve complete or even adequate seizure control and if they do they are EXTREMELY lucky. So surprise surprise, I'm not one of the lucky ones!!
So I still have to keep trying all these drugs, but its just to try and get the one that does the 'best' job.
Spose I'm just gonna have to get used to living with epilepsy now. Friday-Tuesday this week very pissed off, cryey and upset. Think I'm over it now!!
It was my last little bit of hope taken away. Hope of not having seizures, hope of gaining confidence, hope of driving and getting back my independence again. A lot of you won't understand how devastating this news is, how gutted I am and what this means to me. Oh well, it's done, what can I do about it?? nothing.

I haven't been on my blog much coz everything has been a bit emotional and busy. I feel like I haven't got the time or the energy to catch up.
My new drugs.... I started off getting really bad headaches for the first 3-4 weeks, they have passed and I don't get them anymore. I now have really bad tiredness, which I've had for a couple of weeks. Its all happy days.

Been a bit crappy

Want to do an update, but am a bit bored of chatting about seizure's, headaches, tiredness and all that jazz. Things have been a bit up and down and all a bit hard to deal with over the last couple of weeks, so will do it another day

Seeing my consultant on Friday, so hopefully something positive will come of that.

Quote of the day

When its all a big pile of shitty poo, we can't do much else than just wade through it.
Jane Shann ~2010

The latest

Meds a bit up and down.
I've had headaches. Some mild and some intense. It seems to be, that when I first go up a dose they are worse and towards the end of the week (just before I go up another dose) they have calmed down a bit. So it makes me think that once I settle on a dose these headaches might disappear! rather than it them being a long term side effect.
I've got 1 more dose to go up next week and then 1 more week after that to let my body adjust to that. So give it 2-3 more weeks and I should know whats what!!
My doctor is a diamond, he has pain killered me up till then. So I ain't so bothered by my headaches at the mo. I will only take them if I get a headache tho. Like today, I only got a headache towards the end of today.
Seeing my consultant at end of April, so can chat it all through with her.
But so far no other side effects.
Also I've only Had 1 seizure since starting topiramate, which I'm well chuffed about :-)

Eating and weight is still going well, only another 3lb to lose and I've lost 1stone. Think it's gonna be a struggle this week tho. All I wanna do is eat EVERYTHING is Sainsburys, even the bunches of flowers better do some hiding!!