Thats life................

Day 22 of 30

2012-02-01T17:31:00.004Z

I'm out!! my little day trip

YOU LOOKING AT MY AIR!?? (sic!)

Day 21 of 30

2012-01-31T17:50:00.004Z

Now its week 5
(my treatment week goes from tues-mon)

Day 20 of 30

2012-01-31T17:35:00.005Z

Day 15 of 30

2012-01-25T18:52:00.005Z

Day of the baldy!! looks a bit weird all these pic's of my 'new head'

Sorry video went a bit shit!!

Not the best!!

I'm getting a bit bored of watching me being rough & just winging on! Not that i sit here watching all my video's!!!
I'll tell you the only joke I can remember tomorrow :-)

Blog helper

2012-01-23T12:39:00.001Z

Sox and E.T helping with my blog.
well I laughed :-)

Yes another Hair post!!

2012-01-23T11:44:00.006Z

I'm getting 3-4 piles of hair like this a day (when I give it a little brush)
That isn't including all the random stands!!.........corey strand! :-)
It now looks like we live with a big hairy dog!!!!

Family Art & Craft afternoon

2012-01-21T20:15:00.002Z

You don't need to guess who made the girl!!!

Day 13 of 30

2012-01-21T19:35:00.003Z

Day 13

Saturday

The latest (day 12 of 30)

2012-01-18T20:27:00.004Z

Day 10 of 30

Day 12 0f 30

The mask set up (day 7 of 30)

2012-01-12T13:18:00.008Z

Photo's left to right. The end one is me with all my mask marks (golf ball head) as lee has so lovingly nicknamed me!!! don't know if you can really see them in this photo.

This is to show you all how they prepare the mask for treatment.
In your preparation appointments you are told that the treatment only takes a few minutes, which is true, but that's for the amount of the time the actual radiation is admitted and not the time your in the mask for.
By the time they have put it on, set it up, done all the measurements and completed the treatment from start to finish I'd say it can take up to 15 mins initially.
At the start of your treatment they take several scans over your first 4-5 sessions to make sure its all accurately placed within 1mm. They do this directly before treatment, so those sessions I would say your in the mask for about 10-15 mins.
After they are happy its good to go the sessions get quicker. But you are still in the mask for a while, it's the set up bit that takes the time.
Just thought this may help anyone going for the treatment and know what sort of thing to expect.
Gutted if your claustrophobic!! Even if your not, I still have anxious even panicky times. But I think that's coz I'm worried about having a seizure in the mask. But mostly I'm okay with it, you get used to it in a wired kinda way!!!
Don't think my words of honesty will help reassure anyone! but for me I always like to know what to expect with no fannying about!!

Hair update (day 6 of 30)

2012-01-10T19:55:00.005Z

Remember hair is 'my thing'
Just realised I look like a floating head!! that's fucking funny considering

How lush is this

2012-01-09T18:35:00.005Z

Brought a little tear to my eye and made my day

Monday (day 5 of 30)

2012-01-09T17:44:00.003Z

Another side effect: I've got a dry throat and I'm thirsty all the time.
Head feeling more sensitive today, but no headaches.

Sunday 8th

2012-01-09T17:27:00.004Z

Slept all day.
This is my hair au naturel!! lush ain't it!?

During treatement (day 2 of 30)

2012-01-04T17:09:00.006Z

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

2012-01-03T20:20:00.006Z

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)

2012-01-02T20:34:00.003Z

The planning appointment (video 2)

2012-01-02T20:22:00.005Z

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)

2012-01-02T20:13:00.005Z

Hello my sweets

The appointment.........

2011-11-30T12:55:00.003Z

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

New drug & update

2011-11-24T16:51:00.002Z

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.

Keppra
Carbamazapine
Lamotrigine
Oxcarbazine
Topiramate
Phenytion
Clobazam
Zonisamide
Epilim
Retigabine

The mask!

2011-11-23T19:46:00.001Z

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 :-)

2011-10-10T20:03:00.001+01:00

I'm online on my phone now

2011-10-10T19:59:00.001+01:00

.....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 ........

2011-09-12T19:58:00.003+01:00

.........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.......

2011-09-12T16:57:00.005+01:00

.......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

2011-08-11T21:42:00.003+01:00

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.

My little box

2011-04-25T19:48:00.005+01:00

It can be such a lonely world and in my little box that is 'my world', it doesn't really have anything in it! It has little eye holes I can see out of.
Can't see any one though, people on the outside, people outside of my little box!
Things have fallen out the bottom, things aren't put in there any more. My little box is shrinking it used to be massive! My little box has cobwebs, it's been put to the back of the shelf. By me? by other people? or probably both?
It feels sometimes like being in prison, you live for the times your family your loyal people visit, which they always do. But you have no idea what is going on in the 'real' world, on the outside. You don't see anyone else, no one else visits. Why? who knows? maybe my box is too small now?
I feel like when or if I do get on the outside, out of prision, I won't be able to cope! it will be too scary and all the people I once knew won't be there any more! it all would of changed too much. What will I do, who will be there when I finally get home?
Of course my family will, as they all dip in and out of the world that is 'my little box'.
Will I ever get out of prison or am I in for life???

Eplilm update

2011-04-25T19:43:00.002+01:00

Seems to be helping with the seizures, only having mild and the occasional moderate ones.
Tiredness is hard work, I am struggling with tiredness every day.
Weight gain. Increased appetite.

Back to being a fucked up foody!!!

2011-04-25T19:21:00.003+01:00

Great, my drugs are making me fat. I want to cry. I've struggled with my weight most of my life having to watch and be careful with what I eat and as an adult I've needed to keep going back to weight watchers to keep it under control.
My last drugs actually lowered my appetite and I became a weight I was happy with. I wasn't thinking about food all the time, I wasn't eating just for the sake of it, I wasn't troffing and I felt comfortable in my clothes. It was sooooo nice to be like that, without it being any effort. To be able to eat a little bit of what I liked and for the first time food not being the centre of everything.
Maybe I was just a fucked up foody before and those drugs made me a bit more 'normal' without food issues.
But know its back to all the food related shit again. I'm putting on weight really quickly as well. It's soooooo depressing for me.
But as always I will try and keep a hold on it :-(

Drugs update

2011-04-14T20:00:00.002+01:00

List of drugs tried and tested. This is where I'm at now and I'm still on 3,7 & 9

1.Keppra
2.Carbamazapine
3.Lamotrigine -reduced & will reduce further
4.Oxcarbazine
5.Topiramate
6.Phenytion
7.Clobazam -reduced (very small amount)
8. Zonisamide
9. Epilim -NEW

The only side effect of Epilim is tiredness, which I am struggling with a bit at the moment.
I am still reducing Lamotrigine, so my seizures still happen. But Epilim is looking good at getting some better seizure control. Fingers crossed (as always).

I bet you don't even realise

2011-04-10T16:43:00.005+01:00

People always say the phrase 'You don't know what goes on behind closed doors'
Well I bet you don't even realise........................

That I want to have another child.
That I can't go out the house without an adult to supervise me & Jamie.
Can't take Jamie to school, the park, swimming, even somewhere simple like shopping at Sainsbury's or take him out on his bike on my own.
I'm never going to be able to drive again.
I can't or will never be able to ride a bike again (you'll never forget how to ride a bike!) does it fucking matter now!?
I will only on average live for about 6yrs (if lucky) So 2.5 down, 3.5 to go!
I have to rely on my 4yr old son to use a speed dial phone when we are in the house on our own.
I have to employ someone to babysit me, so I can go out.
I have to have this person in my life, which is not by choice but necessity.
Can't use my trike any more.
I have to wear a walky talky alarm watch on my wrist just so I can go to the toilet on my own
Can't have a shower on my own (until the shower is changed)
Can't lock the bathroom door in other people's house's, unless Jamie comes to the toilet with me.
Can't do baking with my Jamie unless someone else is in the house.
Can't just pop out for chocolate.
Can't go on the bus.
Can't drink, unless I want to pass out and have more seizures.
Can't take the bins out, do gardening or any outdoor related stuff etc.
I don't have the chance to increase my son's interaction with other children and to help him make new friends.
I want to make new friends & socailise with my people of 'Choice'.
I can't do things on my own, have me time, go were I choose when I choose to do it.
Lee does all the cooking, ironing and most of the housework.
I have a volunteer to help me do my food shopping.
Can't exercise.
Can't do my job.
Spend a LOT of time in my house.
No one visits us, or if they do its very far and few between.

These things are all as a result of my seizures. If I was to attempt a lot of these things, it would put me and Jamie at serious risk. I can't just 'get on with it'.
I was thinking the other day 'what do other people that have uncontrolled epilepsy do!? do they have carer's? do they just risk it and go out? I was thinking I'd never just 'risk it' with Jamie, but what if I just went out on my own!? it would be really fucking scary (to start with) and I thought what could be the worst that could happen? but then I realised I could fall into the road.

If I was reading this I would think........Sounds like her arms and legs have been cut off!! Or how fucking depressing is all of that!!
The upside is:
I don't have to have someone wipe my arse or wash my fanny for me (just yet) well depends how lazy i'm feeling :-)
I can still feed myself the chocolate that someone else has gone out and got me. (well not at the moment as i'm getter LARGER)

Live life to the fullest?

2011-03-09T16:32:00.005Z

Wish I was 'The Happy Person', but I'm just a miserable fucker!! oh well
'Live life to the fullest' is quite an easy thing to say really. But what is the fullest? and does anyone know of anyone that they think does that? and is it a realistic way to be? is it relative to each individual person? (eg beauty is in the eye of the beholder) how is it possible to do/be like that when there are always repercussions or consequences to your actions?
Does 'live life to the fullest' mean.....

Go off traveling around the world?
Sell your house
take your children out of school
money/dept

Making your house somewhere extra lovely to live or moving to a bigger more luxury house?
money/dept
stress of living with all the building work
moving away

Stop doing all the boring house work?
live in a shit pit
your kids go to school dirty in dirty clothes
get ill through using same plate 5 times!!
wear same knickers for a week, buy more knickers when you run out of clean ones

Do what ever you want to do? what ever it is?
money/dept
family & friends
your children
health

Moving and living abroad?
Leaving family
changing jobs
leaving support

Giving up or changing your job?
Security for you/your family
Mortgage and bills to pay
Responsibilities
Taking risks

What is it you want to do?
To be a good parent
To secure somewhere to live
You and your children to have friends & family close by
Your children to have a good education
To manage your money and not be in debt or to leave debts behind for others
To look after your family and make sure they are all okay
To spend time with the ones you love.

Is this what they mean by 'living your life to the fullest' 'living every day as it comes' or is this just what we all do? or am I completely missing the point? am I looking on the negative side of everything? I could do lots of things to live my life a bit fuller or try and change things to make me more of 'the happy person' but there would be repercussions or consequences.
Do we not do any of these things because we are scared too, do we just get used to our 'ground hog day' lives or just care too much about the repercussions or consequences to others or ourselves.
But then everyone always says as long as we've got our health!!
I'm fucked there then!!!!!

The Happy Person

2011-03-09T16:18:00.000Z

In a World where many have ulcers due to worry and stress
And where people are judged by material success
And since everyone answers to the reaper's call
The happy one is the most successful of all.

For the top job the happy one does not compete
And the happy one never feels sad in defeat
Not to be a hero or catch the big fish
Just to be happy in life is the happy one's wish.

The happy one can be a he or a she
But to find such a person do not look for me
Since like many others i feel weighed down by care
Though people like me they have never been rare.

The happy one everyone wishes to know
And the friends of the happy one in numbers grow
One who is not tainted by conceit or guile
And one who finds it easy to laugh and to smile.

by
Francis Duggan

Live Each Day To the Fullest

2011-03-09T16:16:00.001Z

Sitting on the steps, looking across the lake,
Wondering why, life at times, can seem great.
But in that second, it took me to just think,
My life could change, faster than a blink.

Is this a reason why we should always cherish?
Not knowing when loved ones may suddenly perish.
Living everyday, like it was our very last,
for our days could be very long or go by very fast.

So I'll cherish and take nothing for granted,
not say things that shouldn't be chanted.
If this is the last day I have on this earth,
I accept my life, for what it's been worth.

Tomorrow isn't promised to young or old alike,
Today may be the last day I'm able to hold you tight.
Don't wait for tomorrow, do it all today,
If tomorrow never comes, you'll never regret a day.

Amy D. Liskey

Seizures r shit

2011-02-06T13:16:00.004Z

Update isn't really that positive....'oh there's a surprise'.
Seizures have progressed to 'Secondary generalised seizures'

With seizures it is hard to explain how they change and the different types. Also how they can change into different types!! But here goes anyway........

Basically mine started off as simple partial seizures, which involved electrical activity in my brain focal to where my tumour is and the activity didn't spread or go to any other parts of my brain. Therefore only effecting a small part of my body.
Now the seizure starts in that same way, but the electrical activity now continues on into other parts of my brain. That's why its called 'Secondary generalised seizures'. It now affects a lot of my body causing spasm's and contractions in other areas not associated with where my tumour is located. The activity does not travel all over my brain (at the moment)
When the electrical activity is in all areas of your brain then that's called a 'generalised tonic clonic' seizure and that's when your brain has to sort of reset and start again! because it can't cope with all the wonky activity all over your brain!

I think there are actually 40 different types of seizures in total! but they are basically divided into two major groups of seizures – partial and generalized seizures.

Well that's my way of explaining the seizure situation (above)
This is the experts or proper way of explaining it (below)

All seizures are caused by abnormal electrical disturbances in the brain. Partial (focal) seizures occur when this electrical activity remains in a limited area of the brain. The seizures may sometimes turn into generalized seizures, which affect the whole brain. This is called secondary generalization.
A generalized tonic-clonic seizure is a seizure involving the entire body. It is also called a grand mal seizure. Such seizures usually involve muscle rigidity, violent muscle contractions, and loss of consciousness. Generalized tonic-clonic seizures are the type of seizure that most people associate with the term "seizure," convulsion, or epilepsy. They may occur in people of any age, as a single episode, or as part of a repeated, chronic condition (epilepsy).

My seizures can move on into a tonic-clonic seizures, as I've been told by my consultant. But it doesn't mean it will and a lot of people just stay with the same type of seizures and they never change. That's how I thought mine would be! and I wasn't even aware that they could change in this way. I thought that once they told you what type of seizures you had that was your diagnosis!!
Two years ago, when first diagnosed I could stand and have a seizure!! My right hand would twitch and my right arm would move up towards my face and my head might, but not always move to the right.
Now and with the latest seizure. If after my warning I don't lay down I will fall down. So 1 hand twitch and I get down into recovery position. Without going into to much detail. It now affects my facial muscles, mouth and throat muscles, both my arms, my right leg, sometimes left leg and it affects my respiratory muscles to now. So during my last seizure I bit my lip and chewed the side of my cheek. I stopped breathing for a while and lost consciousness for a couple of seconds. It's scary fucking shit especially because I am still aware of what is happening to my body. I feel like I'm chocking and can't breath. But I can't communicate with anyone, even though I still have the thoughts in my head. At the peak of the last seizure I wasn't aware of anything and that's when I lost consciousness.
My epilepsy nurse said all of this is quite common to happen during a generalised seizure as all of your muscles can be contracting and spasming and that's what happened to my respiratory muscles which stopped me breathing. But she said I will always start breathing again and that I won't choke! at the time it was happening, I was thinking shit I'm not breathing, I'm not going to get through this one.
It seems like every seizure I have, something else shit happens as well! When people have a generalised tonic clonic they lose consciousness, have the seizure and then wake up after not knowing what's happened to them. Where as I have to go through it all, knowing what's happening too me and panicking its not all going to be okay! With my last seizure all I could see as I came out of it was blood and saliva dripping from my mouth.
I can't talk for several minutes after and the process of brain to mouth communication won't return properly for a good 40 mins+ (I just feel spaced out) It can take it out of me for a couple of days. Where I have a headache, extreme tiredness and my body will feel like I've been beaten up!! also with any mouth injury's I have, it can take me up to 3 days to recover. I do still have milder seizures and I have a rating system of 1-6, 6 being the biggest and worst I have and 1 being a hand twitch and that being it. But I had a week, where I had 4 or these big ones in 7 days. I do have some kind of seizures every day at the moment and I never know if it will progress to a 6 and I never know when they will happen.

So that's basically what it's like for me and my family now.
I'm putting together a first aid thing for my family, so they all remember what to do and when to ring an ambulance.
Jamie has got to the stage where he is just used to them. I think it still scares him, but he knows mummy always gets up again! It doesn't matter how many times my family see it happen, because the seizures are never the same it is still scary. I don't know which side of the seizure I would prefer to be on. I would hate to be witness to that happening to someone I love, but then it's so fucking horrible having one. I can't imagine what it is like for my family to deal with all this epilepsy shit!!

Anyway bored of talking about it now, it pisses me off.

I've started Epilim now, been on it 2 days, my consultant said she has put me on a good starting dose (200mg am & pm) So I've got 2 weeks of seeing how that goes before I see her again.
Still having side effects from my other drugs, so still feeling a bit crappy a lot of the time. Well all of the time really.

There is lots of other stuff going on with us with getting help etc. But I'm depressed enough now, so that can wait for another day.

Drugs update

2011-01-15T18:06:00.007Z

List of drugs tried and tested. This is where I'm at now and I'm still on 3,6,7 & 8

1.Keppra
2.Carbamazapine
3.Lamotrigine -reduced & will reduce further
4.Oxcarbazine
5.Topiramate
6.Phenytion -reduced
7.Clobazam -reduced
8. Zonisamide -coming off it
9. Epilim -NEW

Zonisamide had horrible side effects and I was only on the lowest dose!! I was on 50mg, but consultant sad its possible to go up to 700mg!! It didn't make any impact on my seizures either.
So in process of coming off of that one.

Now I've got some of these drugs a bit out of my system and once I'm off of Zonisamide. I will be starting drug #9.
The depressing thing is, is this is basically my last hope drug!
There are 2 more, but both my consultant and my epilepsy nurse say they are pretty crap and they use them more to treat headaches, so there is not much point in trying either of them.
So Epilim is the last drug to try! if this doesn't have an impact on my seizures and has unbearable side effects, then I've gotta live with how my seizures are (I'm fucked!!!).
It's all about weighing up seizure control with side effects. Quality of life. Trying to get a livable balance between the two. All I know is I don't wanna remain or carry on as I am at the moment.

Wish I could be like one of those inspirational people that you read about in magazines and papers. To be an inspirational story, like raising awareness of brain tumours, raising money, what ever. Maybe not even those things, as wouldn't want the attention. But just being someone that can be amazing for my family. Being something other than just someone that drags their arse around feeling like shit! someone that does something other than rely on everyone and anyone. Someone that isn't a depressing cling on because I'm so lonely.
I read the headline of a story in the paper the other day '11yr old boy battles against a brain tumour and raises thousands for charity' (or something similar) only read the first bit of the story because I just felt like such a waste of space and that I can't even do anything, so didn't read the rest.
All I can do is prepare and plan for the worst and for when I die, how fucking depressing is that!
Do memory boxes for my boys and collect things etc for when I'm dead. Talking to grief support people and how to help Jamie. Planning and adapting the house for being in a wheel chair or some degree of disability as we do up the house. Talking to social services and having to sort out a team around Jamie and a social worker for me in the disability services. Talking to Lee about after I die and what I/we want with funeral stuff etc.
Some of you maybe thinking why all of this now? Well because we never know when its likely to get bad and because everything seems to have gone down hill and got so much worse so quickly over 8mnths.
Don't know if I've said before!? but my consultant has said in her career (15yrs) she has never had a patient with my illness to live longer than 6 yrs! and don't forget average life expectancy is 7.
I don't know how long I've got! so better to do it all sooner rather than later. I want my boys not to have to worry about any unnecessary stuff when I die. They will have enough to deal with.

Anyway not looking forward to starting this new drug and wasn't planning on sharing some of my depressing shit, but hey it just comes out.

I'm still here

2011-01-01T20:16:00.003Z

Don't worry peeps I'm still alive!!!
Still having a shitty time of it. Bad side effects and bad seizures, so the best of both worlds!!!!
Bad headaches. I'm living off of codeine and chocolate at the moment and as much sleep as I can get. Trying hard, but haven't got much left to give. Once I've given Jamie half of what he needs (that's as much as I can) I have nothing left for anyone or anything else. Which is really making me sad at the moment.
This isn't me, this isn't what I'm about! struggling through every day.
Anyway 'Happy New Year' or at least lets really hope it is
x x

Happy facts of the day.....what ever!!!!

2010-11-04T11:33:00.003Z

*More people under 40 die of a brain tumour than from any other cancer
*25% of all cancers spread to the brain
*16,000 diagnosed with a brain tumour every year
*Only 12% males & 15% females survive beyond 5 years (compared to 50% of all cancers)
*Brain tumours are the biggest cancer killer of U.K children

...and don't quote me on this, but 'cancer research' only donate about 7% of monies raised to brain tumour research! work that one out!!!! (its something like that)

What the fuck is going on!? Brain tumour research is so under funded. At least we have 'Samantha Dickson brain tumour trust' and they do work quite closely with cancer research now. 'Samantha Dickson trust' use a high percentage of its monies raised to fund brain tumour research because they know how important it is. But why not have a little looky for yourself....

http://braintumourtrust.co.uk/
They do what they can to help support people with brain tumours, update you on research, have other peoples stories, well lots of stuff really.
http://www.braintumourresearch.org/index.php/lobbying-news-.html
Another useful site!

I'm just having a big fucked off day, because sometimes I feel like I've just been left to die! WAIT AND FUCKING SEE is my treatment plan. Have you ever heard of anything so fucking stupid. They are basically saying 'we will wait for you to get cancer, treat you and then hopefully see if it works and you won't die' yeah great I will go along with that.

I will be dead before all this brilliant research will help someone like me! WHAT ABOUT ME?
Everyone always say stuff like 'well modern medicine and all that, you don't know what could be around in 10 years' I know that I won't be, so shut the fuck up!

There is nothing out there to help me live my life as it is now! If you have a low grade tumour you might as well forget it, its not urgent enough!

I'm having a fucking fuckedy fuck day with a bar of dairy milk thrown in for good cheer!!! la la

Haven't got any fucking chocolate

2010-11-03T18:49:00.003Z

Being brave together today.......

Me and Lee had an appointment with a lady (Kathy) from a 'Grief support for the young' thing, its called SeeSaw and it is sort of like Grief counseling but they work with the whole family and make sure the child/children are supported at home and at school.
http://www.seesaw.org.uk/
They are basically there for Children that have lost someone close to them. But they also deal with family's that have a parent with a terminal illness.
They can help you with what to say to your children (that's appropriate for there age) how much to tell them, when etc and do loads more. They support you all as a family 'before' and 'after'.

The reason's why we decided to do it now (if your thinking 'bit keen')
1. To see how Jamie is coping with my seizures and how we can make it all easier for him.
2. He has started asking more questions about my seizures and why I have them. Wanted to say the right things.
3. To build up a relationship with someone 'before', so that he is secure and comfortable with them 'after' I've gone and isn't just faced with loads of new people after mummy has died.
4. We had got some children's books explaining epilepsy and lifetimes and wanted to ask advice on that.

Kathy reassuringly said that it is really good to start all these type of things now, so that your drip feeding them bits of information as things happen. She said not to tell them what might happen, but what is happening day to day or as things progress.
I feel so much better knowing that Jamie & Lee will have someone they know to help and support them after I've died.
Its also such a relief to know now that they can actually help and support us at any point through my illness.

Kathy also said she can help us all with the memory box type ideas and what sort of different things we can do.

Even though it was positive & helpful, it's just one of those shitty things that need arranging really. It wasn't so emotional as we've both been through the hard crying our eyeballs out stage with it all so many times.
Having said that It's so hard when it comes to your children, because just thinking about what they will go through and how it will change there lives etc feels like someone is trying to rip your heart out of your chest. But you just get used to having to talk about it all the time and explain to people what is likely to happen, what will happen, what can't be done, bla bla yak yak. So you just end up becoming very robotic and matter of fact about it all....well we seem to have 2 yrs down the line (which actually feels like 5yrs).

Actually I haven't had chocolate and a good cry in a while. Think it's needed

Drugs update

2010-11-02T17:56:00.004Z

List of drugs tried & tested so far

1.Keppra
2.Carbamazapine
3.Lamotrigine
4.Oxcarbazine
5.Topiramate
6.Phenytion
7.Clobazam
8. Zonisamide (slowly increasing this one over about 6-8weeks)

I am currently on 3,6,7 & 8........ (Back on 4 at once)

My specialist epilepsy nurse said its no more affective being on 4 drugs at once than on 2.
The problems with being on all these drugs at once is:
More side effects of feeling generally crappy, fatigue & tiredness, due to the amount of drugs in my blood/system. So my consultant, docs and specialist nurse all want to reduce the amount of drugs I take. oh and of course me as well.

I also can't lower or change any of the existing drugs, whilst adding in a new one for 2 reasons
1. It will make my seizures go a bit mad and worse and possibly make all of my existing side effects worse.
2. The docs won't know if its the new drug making all of this happen or reducing one of my old drugs that is making it all worse!
So they keep me stable on all the other med's when introducing a new drug. And the drug of the month is now 'zonisamide'

With trying a new drug it can all seem to be good at the start with helping my seizures and providing I don't get any immediate side effects everything looks positive. Then after a little while it's as if my body says 'yeah whatever!' and carries on as before. It gives me false hope :-(
With zonisamide my nurse said it can take several weeks for it to build up in my system, but it is a very affective drug for a lot of people. Lets hope I don't get any side effects!, won't really know until my doses get bigger tho.

My consultant said because I seem to be particularly sensitive to drugs that they would do this one slower.

Next appointment with consultant is in a couple of weeks and we can discuss how I'm getting on with zonisamide.

Think that all makes sense!

P.s........

2010-10-29T12:49:00.002+01:00

There isn't anyone else I would rather be locked in that cupboard with!.......well as long as people can still pass me chocolate through the letter box :-)

Locked in a cupboard!

2010-10-27T20:36:00.005+01:00

Have filled in all the forms, ticked all the boxes, spoken to the right people and done all the appointments. Well at least we think we have!!!.......for now.
'Hard times' is what me and Lee keep saying to each other!

I had 2 mega seizures in one day last week, that has never happened in the history of 'Jane' (2 big one's in one day). My seizures just scare the shit out of me now! Never knowing if it will be a mild or bad seizure. Not feeling safe on my own or with Jamie. Scared to do anything 'just in case'. I haven't just been 'freaked out' by my seizures and become a sad recluse loner type person over night. Its not a case of 'my seizures are bad I don't wanna go out, I'm too scared to do things on my own now'. Its been nearly a year of my seizures gradually getting worse to end up with me being/feeling this way. I've always been a 'just get on with it' type person and over the summer my seizures have slowly worn away at my 'oh fuck it, lets just do it' attitude.

My re-accruing story in short.....
Have a bad seizure, fall & hurt myself.
Scares me, knocks my confidence, don't do my usual stuff and hide away for a while.
After a few days-a week think 'fuck it, be brave' and pick myself up again.
Try to carry on with my usual life/daily routine with Jamie.

Imagine doing that over & over again with your seizures getting worse and more frequent. Each time having to be brave and try and get on with things.
Well my seizures have taken all the 'fuck it, be braves' out of me.
It has also become unsafe for me and Jamie to be out and about on our own as I never know when a bad one is gonna hit me. So even if I had any 'fuck it, be braves' left in me. It's not worth putting me and Jamie at risk.

My seizures have become even more scary now as I choke and don't have any control over my mouth or throat towards the end of a 'bad' seizure. So I don't want to be on my own really.
At the moment my family are trying to pull together to help look out for me and Jamie, but realistically it's only a short term solution.
So after the shit summer of shite and how my seizures are continuing to get worse, me and Lee have decided to look for some kind of proper care/help now. Which is a very hard thing to do for both of us. But it needs facing and doing.
That's all I wanna say about that for now.

Went to see my 2nd opinion consultant today, not impressed!! anyway she's put me on yet another drug to try on my seizures, Zonisamide (drug #8) a fairly new drug. That will take me back up to 4 drugs at the same time again. Will start that one in the next couple of days. Still having crappy side effects as well as seizures everyday. So life is jolly la la.

Me and Lee have had some really tough times over the last few weeks and still are! But at least we have each other to get through it all, even if we are moody fuckers at each other!! It's so emotionally hard and stressful, I couldn't even blog that down if I tried.
Only me and Lee know what it's like to be in this nightmare!
'Jane way' of explaining it: It feels a bit like we have been locked in a cupboard from the outside world and the key is inside the cupboard somewhere but we just kind find the key. We get stressed at each other coz we are in this cupboard and neither of us can find this fucking key. But we still keep trying. No one on the outside of the cupboard can help us find the key, coz its inside the cupboard. But they can still pass us food, drink and encouraging words through the letter box!!!

Not that I've ever been locked in a cupboard with a 6ft+ skin head before!! but you either get the 'Jane way' of explaining things or you just think I've lost the plot and you don't 'get' me!!! I think that most people mainly think 'lost the plot'.......never mind!!

Quote of the day

2010-10-27T18:39:00.002+01:00

Love does not make the world go round
Love is what makes the ride worthwhile

Facing another week of struggle!

2010-10-11T20:35:00.002+01:00

Tears yesterday knowing I've got to face another week of struggles. I have even written on my calendar 1 house job to try and do each day (how sad is that). Even tho totally knackered I managed to get my 1 job of the day done, but had a seizure doing it!.
More side effects on drugs this week: cognitive problems e.g short term memory probs, unable to multi task, slow thinking, forgetting what I'm gonna say or do, still having headaches and struggling with tiredness. To top it all off I have a stinking head cold too now.
I just can't stand this daily struggle any more, it's become to much for all of us. We are now looking at getting some care help. It's depressing and upsetting as you have to go through all the in's and out's of your illness. Explain everything, tell them all the shit that you don't wanna be reminded of. Explain what your days are like and when you have to say it all out loud and to a complete stranger its hard to keep it together.
I feel so alone, I just can't even begin to try and explain!!
Welcome to my week........

Mines finished.........

2010-10-10T22:16:00.004+01:00

.......now it's your turn.
I think it's your turn to tell me things 'you think' I might not know about you. Off you go.........
Don't think I need 100 tho :-)

Need cheering up, having a bit of a shitty time at the moment or should I say shitter time!

Am a bit floaty!

2010-10-06T16:11:00.002+01:00

Been suffering with bad headaches this week. Been taking strong pain killers, which make me feel a bit 'floaty' Headaches are probably a side effect of Clobazam! been up, down and all around on this drug so far. Done a bit too much today I think! it's because I'm not feeling as tired at the mo, so I then tend do more and then flake later!!

100 Things you might not know about me.......

2010-10-01T14:29:00.022+01:00

I was thinking that when someone dies and people start to talk and remember that person. The sentence 'I never knew that about....John' (or who ever) is said.

So here's my silly little list of things you might not know about me

I only have salt on eggs & mash
I don't eat chewing gum
I can only enjoy a cheesecake if I eat it with a fork (not a spoon)
I don't drink coffee
I drink around 15 cups of tea a day (that's an obvious one to people who know me)
I had size 4 feet before I had Jamie but now I am a size 5
I have been every size between a size 8-18
I hate marmite
I wipe from the front
I am neurotic about my hair
I have had eczema since I was a baby
I sleep on the left
I have a scar near my left eye where I had a sever plucking accident when I was a teenager
Favourite cake is carrot cake
My hands are really cold right now
Never owned a goldfish
I love cheese on toast
I don't like takeaways
I can't stand Mcdonalds (I call it Mc shit)
The only flavour milkshake I like is Vanilla
I got married when I was 22yrs old
I got my ears pierced when I was 6yrs old
I'm 5ft 1 and have been since I was 12
I love PIZZA but only margarita's
I smoked for 13yrs
Gave up biting my nails when I gave up smoking!!!
I pick and eat my boogies, not not snotty one's (and i'm not ashamed to admitt it)
I have a brother....I know!!!
I LOVE tea
I was bullied at secondary school
I LOVE Cadburys dairy milk chocolate, love it, love it
I can't stand full fat milk
I lost my virginity at 15yrs old (not proud of that!)
I shaved all my hair off and had a skin head for 3 years (hair dresser fucked up my hair)
Lee has put me off onion, can only eat it if its very finely chopped and there's not to much of it in anything
I have been a vegetarian since I was 12, but eat fish (I think they call that a demi-vegetarian) so I'm one of them.
Don't like spicy food
I LOVE icecream (Proper Italian icecream is my favourite)
Used to be a fitness & aerobics instructor
I have owned a smart car (loved it)
Can't drive any more
My birthday is in October
My dad died of a sudden heart attack when I was 26
I have never mowed a lawn or used a lawn mower
I am always hoping someone will make me a tea
I LOVE my sleep and lay ins
Longest distance I've ran in one go is 10km
I HATE anything pink
I had piano lessons when I was younger
I lived in Devon for 8yrs (hated it)
I have 2 scars on the inside of my mouth from putting the top of a baked bean can in to suck off the sauce
I HATE maggots. Some people are scared of spiders etc and freak out. Well I feel that way about maggots.
I like mint feast's (icecream lolly)
I got engaged at the top of the Iffel Tower
I'm the oldest child in our family (3 of us)
I think Simon Cowell is so so wrong!!!!!
I used to have weebles and a little swing for them when I was little (absolutely loved them)
I've had double pneumonia
I sleep with one pillow
I have lived in a pub
My maiden name was Sutton
I was born in Luton
The colours my hair have been: black, all shades of brown, blonde and electric blue
I don't read books, only fact ones when I need to.
I studied Graphic design at college
I've drawn naked people (life drawing class)
I have blue eyes
I wrote in my school book when I was about 8 that when I grew up I wanted to be an electrician
I only brush my teeth once a day
I have to have mayo with chips otherwise I can't/won't eat them
I only eat salad cream with fish fingers
I CAN NOT drink pissy tea
I'm scared of the dark
I don't watch any soaps (as in programmes! not the washing hand kind)
I'm allergic to 1 type of banana milkshake
Passed my driving test 3rd time
Can't and won't each anything slimey
Can't and don't drink alcohol any more
Don't like white chocolate
I don't like beans with any main meal, just on toast or in a jacket potato
I've ALWAYS wanted to be REALLY SUPER skinny
I had the same stats as Sam Fox when she was a page 3 model when I was 14
I can't stand 'the green balloon club' it makes me wanna vom
I have had all of my little lady waxed before
I first got drunk when I was 12
I don't eat ketchup
Put on 4 stone when I was pregnant
I text when I'm on the toilet
I hate my hair
I've never done a crossword
I NEVER share chocolate (seriously)
I have 2 tattoo's. One I like and One I hate
I don't own a pair of flip flops (donated by Louise)
I don't mind crisps, but I prefere not to eat them (donated by mum)
My sister is my best friend, she hopes :-) (donated by Louise)
I have 17 cousins and Lena is the bestest (donated by mum, adapted by me and my mum corrected by Lena)
My top 3 favourite swear words: Fuck (& all in the family of fuck. E.g fucker, fucking, fuckedy etc) Shit and Twat.
I've seen 'The one with Ross in the tanning booth' episode of friends at least 50 times and I still laugh every time (donated by Lee, adapted by me)
I used to call all children 'Aliens' (donated by Lena, yeah thanks for that one cous!!!)
My middle name is Emma. My sisters is Eleanor heeee he, sorry Louise just had to do it!

That will do for now. I'm sure there are some bits you wish I hadn't shared :-) but never mind.
My 100 is finished now :-)

It would be funny to think of people reminiscing or talking about me after I'm not here any more and saying some of those things. Like 'me having my little lady waxed'
But it's probably more likely to be 'oh do you remember when Jane wrote that stupid list on her blog? how random was that?'
Oh Well at least you all know a little bit more about me and that's never a bad thing!

Drug update.....

2010-09-30T17:27:00.003+01:00

List of drugs tried & tested so far

1.Keppra
2.Carbamazapine
3.Lamotrigine
4.Oxcarbazine
5.Topiramate
6.Phenytion
7.Clobazam

I am currently on 3,6 & 7

7 seems to be having the best impact on my seizures out of the ones I've tried so far or should I say 'at the moment'!!

My consultants plan is to try and get me on less drugs, but first she has to try and stabilise my seizures before she can pull me off any of them. She said the more drugs your on the more fatigue and tiredness you will suffer and just generally feel more 'rough' and struggle.

Clobazam is the drug that she is aiming to gain some stability with. It totally whacks you out (extreme tiredness & fatigue) for about 2 weeks when you first start it or when you go up a dose.
So am struggling a bit on this one. Initially it helped seizures loads, but now seems to be getting less helpful (fucker)

I've gone up one dose already since starting Clobazam, so watch this space.

Soooo lonely

2010-09-28T20:25:00.002+01:00

I think anyone that hasn't got or had an illness can appreciate how fucking lonely it is. How you have to deal with daily struggles, tears, med side effects, how it all affects the people you love etc (and there is loads more) on your own, on a daily bases and how you are left to pretty much 'get on with it'.
I am struggling to take Jamie to school now on my own, because I feel it's unsafe for both of us. It's too far to walk, can't trike it, the buses aren't ideal times in the mornings and I haven't the confidence to go on the bus on my own with Jamie anyway (the 'just in case' factor).
Every now and again the 'old' Jane in me say's 'fuck it, just get on the bus or what ever, just do it' But every time I'm brave and try to do something I have a big hideous seizure that injures me and causes me deep distress.
Anyway I'm lucky I have my sister, she will do everything and anything to help me if she can and she has been doing school run for me and Jamie.
But that's ALL I have in my day now, drop Jamie at school and pick him up and I can't even do that job properly (on my own). But I don't care how bad things get that will always be my thing I do for Jamie (my job for Jamie) It is isolating for me and my boys having to deal with all this stuff, everyday.

I don't tell people what's going on with appointments and meds anymore. I have so many appointments, I just wanna go in, deal with it, deal with what's said or decided and get on with it. It's so much easier that way, coz I don't have to worry about anyone else! I can just be selfish and focus on me and have Lee there as my support.
I just want to have normal chit chat with people and not talk about it every time I meet up with someone, It fucking depresses me. I wanna feel more normal and chat and laugh about silly shit. I also hate seeing the sadness in people's faces when I tell them stuff, so i'd rather not.
I do feel a bit sorry for my sis though as on our coffee day I do off load on her a bit, but then we chat about everything and I wouldn't not say.
My mum said a classic last week that made me smile. I was talking to her about all the crap stuff that had happened in the week (weekly crap update) and she said (in a soft way) 'oh you pooooor cow' I think a lot of people probably think that. But it was just the sweet way my mum said it.

Anyway really fucking tired now. Normally in bed by 9pm!!!

Shit summer

2010-09-28T19:28:00.003+01:00

This year without out a doubt has been the hardest time of my life so far.
Haven't been on my Blog, even though it's my 'Therapy' because everything has been too emotional, horrible and hard for me to even think about it.

One of the main reasons being my seizures, over the 6 months or so they have just gone down hill big time! As you all know I have partial seizures that affected my right side. Well they've changed from twitching in my arm & leg and my arm coming up to my face, head turning etc. To being unable to balance whilst having a seizure even when sitting down, gurgling, choking noises and dribbling, my whole body trying to twist right round. I am still fully aware of what's going on around me, which in a way makes it so much worse. Because I know what's happening but am powerless to do anything about it.

I had a bad fall when I had a seizure back in June now I think! I cut up my shoulder pretty badly and hurt all down my left side. As I fell i just thought 'oh shit' and then when I was laying on the floor before my seizure finished I was just thinking 'please no one come over to me' It was the worst experience of my life.......Well so I thought! (other bad seizure crap has happened) but don't wanna go into all that.
After that fall it really affected me, in the fact that I didn't want to go out because I would never know if it would be a bad seizure day! (I still don't) I was worried about my safety and more importantly Jamie's safety when we would go out. Even sat on the floor I can't balance I still fall and hurt myself. So it's now become un-safe for me to go on my trike as I would just fall off if I had a seizure. For weeks after I wouldn't engage in conversation with anyone other than family just 'in case'! I wouldn't go out on my own unless I really had to (taking Jamie to school) it has been hideous, lonely and scary.....and still is, oh and I still have all those feelings, but maybe not to that extent now.
I've shut myself away and have been trying to deal with the shit day by day. Because my med's still aren't controlling my seizures and they have become quite bad, I now have to tell people so that they don't totally freak if it happens in front of them. Having to explain to people what might happen has been a really hard thing to do as well, I don't wanna have to be explaining something to people that I am finding really hard and emotional to deal with. I hate feeling like I have to tell people and its not people I chose to tell, its people I HAVE to tell (e.g Jamie's school etc)
Anyway enough about all of my hideous seizure crap.

Now the Drugs...... The other reason for not being on my blog is the extreme tiredness from my drugs. At one point I was on 4 drugs at the same time, down to 3 now. I am still suffering from very bad tiredness (its a bit better), but thought I'm ready to get back on here now and do some ranting of my shit.
Oh and I'm on drug number 7 and still going......Consultant said I will have to live with my Epilepsy, but hopefully we can aim to get the 'bad' seizures under control, but that may not happen either. But said all we can do is keep trying.
She has arranged a 2nd opinion with an epilepsy consultant for me, as she is my neurologist that deals with epilepsy. So she thought the other consultant might have a bit more experience to help me a bit more, but I think it will just be a case of 'well which drugs do you wanna try me on now?'

So much has happened in the last 8 mnths (in terms of my illness). I usually see my consultant every 3-6 mnths depending on how my meds and seizures are and I've been seeing her once a mnth for the last 6 mnths now.

Feel super sad that my boys have to live with this, with me. But they are both really brave and I'm glad they are there. Thank fuck I have the love and support of all my family.

Anyway its all been extremely fucking shit for all of us and that's all I want to say about it all. So lets leave it at that.

A Friend in need

2010-07-26T11:34:00.003+01:00

A Friend in need
Friends! Nothing more to be said.....

A friend in need is a friend indeed,
As the popular saying goes;
Someone who is always there,
To help you with your woes.

I've been through life a fair way along,
And many things I have learned;
There is nothing like forever friends,
One day all bridges shall be burned.

So to all those of you out there,
A warning I send loud and clear;
Beware of having friends aplenty,
Most will never hold you dear.

'Tis but a brief passing phase,
In each and everyone's life;
A friend will move on from you,
Causing a whole lot of strife.

And before you think me bad,
For saying things about friends so dear;
There are one in a million,
Who will always keep you near.

I have moved on myself,
From many a friend in the past;
For reasons that seem so petty,
I wish I had made them last.

So choose your friends with care,
For a happy life to lead;
Remember and act on the saying,
A Friend in Need is a Friend Indeed!

I just can't explain how fucking horrible they are

2010-06-18T21:54:00.003+01:00

.....or what it is like to have them.
My seizure's have been really fucking horrible lately. I thought they were getting better for a bit but 'OH NO' they were just hiding, just tricking me.
I will carry on with this post later. But I just don't even wanna talk about it all at the moment.

P.s........

2010-06-17T08:40:00.003+01:00

Not that I feel that I should or have to explain myself, because that is not what my blog is for or about but.....

My last post was not a suicidal, put me on anti depressants cry for help.
I know and appreciate that I have my wonderful and gorgeous boys in my life, which I love so so much. I also know I am so lucky to have all my other family to support and love me, who I also love very much.
So don't say "she doesn't know how lucky she is" or what ever it is people say!! Because 'I DO' know how lucky I am and 'I DO' know that their are a lot of people out there who don't have any love in their lives. People who don't have anybody to share the good or the bad things in their lives and 'I DO'
So don't call the men in white coats, with all the pills just yet!

I am just so fucked off that I am having to live with this shit day in day out with no escape.

Feeling shit all round

2010-06-16T18:58:00.002+01:00

Everything is a big pile of shit. Med's, Seizure's, having no friends, having no where to take Jamie, to help him/me make new friends, having nothing to look forward to, everyone knowing i'm a tumour twat, having seizures in front of people I know, people I don't know, side effects, tiredness, tiredness and more tiredness bla bla yack yack.....It's just all a big pile of poo.
The end

Feeling a bit better

2010-06-08T20:51:00.002+01:00

Feeling a bit better on my drugs. Still really fucking tired, Monday was my worse day for tiredness I was proper hanging!! Fell asleep on the sofa. Jamie was good and let mummy have 'a little rest'.
My seizures seem to be easing a bit, now I've said that I will have 6 major one's in a row this week now. But I've started to have mild one's again, which can only be a good sign.
Going up another dose (pm) this week, which shouldn't affect my side effects as the pm one never does.
Just a little meds update.

Wish I felt lucky at the moment

2010-06-06T19:03:00.002+01:00

I was thinking today, it's been nearly a year and a half since my diagnosis and I don't seem to have moved on much or come very far!!
Maybe in the future when things are worse for me eg when the physical or mental crap is happening to me, being in hospital having treatment etc I will look back and think 'God I had it so much easier back then, even good, all I had to deal with was seizures!!
In the future when I am much worse, will I look back and think 'I could do so much then. I could use my right arm to type and write. I could walk unaided. Why did I bitch and moan? I was so lucky.
It's just I don't feel very lucky! maybe I should.
Maybe I should feel lucky.....lucky just to be here.
Been thinking a lot lately about dying and not being here. I think when your ill and you know it's gonna get ya, you go through stages of thinking about not being here. Well I do anyway. Then it gets me thinking about all that crap again.

I just wish I felt lucky at the moment, as I have a lot to feel lucky about.

Had a fantastic happy day with my family which does make me feel lucky today :-)

Me at the moment

2010-06-05T21:18:00.004+01:00

Given up on the wine for now! might try something else. It just made me feel like shit and I didn't really enjoy drinking it anyway. Didn't change my seizures tho.

Sticking with Topiramate for now. It seems like my body just takes longer to process the drug!
I started off having really intense side effects and with each dose I went up I acquired new side effects. But slowly over time the side effects decreased and they then eventually disappeared.
I am still going up doses and still getting different side effects each time I increase but I now wait for the side effect to go before I go up another dose!
At the moment its TIREDNESS!!!
Topiramate doesn't seem to be doing its job of controlling my seizures! but I am still on a low dose. But hopefully it should do something to them once I get on a decent dose and all this heart ache won't be for no reason.

I am being a bit of a sad cryey twat at the moment. Its just all this seizure crap is really getting me down and knocking my confidence even more than its knocked already! and its just a constant reminder that I have an alien inside my head.
I just can't get passed this at the moment! its because my seizures have changed. I could of had mild one's and a lot of people wouldn't of even noticed. But now I have these horrible mumbly ones all the time, that just shout 'hey look at me'. I beg my brain not to have these horrible fuckers when I go to see people or do something new/on my own . But it has them anyway, just to spite me!! or just because it wants to, or maybe coz it doesn't give a flying fuck.
Anyway that's me at the moment..... well the short and not so depressing version

I hate being me

2010-05-30T20:47:00.003+01:00

People always say "there are always people worse of than you" as I did in my last post.
But I got to thinking I am one of those people!!!.
I'm sure that when people visit me, speak to me, read my blog etc, what ever they are going through would feel a lot better or feel 'lucky' that they are not me or living my life!
I don't think my problems are any worse than other people's, but just maybe I make them feel a much better about their lives. I am having a really 'HATING BEING ME' time at the moment.
I've started on the wine again after not drinking since September! I don't really give a shit about what it does to my seizures as I'm having fucking horrible one's anyway, so why not? I might as well enjoy a bit of wine!!

I am waking up in the morning at the moment hoping I had a different life to live. Wishing I didn't have to worry about whether I might or might not have a seizure that day.
Anyway I am moaning on about the same old shit again.

I fucking hate living with seizures

2010-05-28T17:52:00.003+01:00

I just get so fucking fed up with it all.
Not being in control of my life or what is happening to me
Living with these seizures and knowing it's always going to be that way
Medication: taking it everyday, trying different drugs, different doses, side effects etc until I can just get the best I can hope for.
Not being able to drive (oh that one again!!)
Blaaaa Blaaa bla. Yeah Jane we have heard it all before.

It's shit enough having a brain tumour but why do I have to live with these fucking seizures?? I HATE it. I HATE them.
They take away your confidence, your self respect and your desire to go out and socialise. When they happen, you feel embarrassment. not only for your self, but for the people that know you and the people that don't. You can worry sometimes about your safety.
I worry if I might fall over and if someone would help me. If someone might lead Jamie away! etc etc.
and then you read something like this.....

Submitted by Mayville on 8 March, 2010
I have been taking Epilim at 2500/day for over two years. I have had hair loss,skin rashes, psuedo parkinsonism (shaking hands), total memory blocks, irrational / compulsive / erratic behaviour which has cost me a lot of money in just buying dumb things that I would never have bought before I got this drug.
I was on carbamazepine but I had severe rare reaction to it, my teeth chattered together like a sewing machine, really fast & even in my sleep. I was moved from carb. to valproate and the truth is that my Doctor says, the type of hyperconvulsive events that I have, there's very few options on the market that are effective for me. More modern medicines have fewer side effects for most people, but for some seizure disorders valproate is the only solution that is a solid defense against the events.
I consider myself lucky really ,despite the side effects. Before I got Depakine and then the Epilim, I had hyperconvulsive seizures that broke : both hips, 6 ribs, both shoulders. Ive had lungs full of blood, and a 1.8 minute flatline. All just from banging against the floor. But since I got valproate 2 years ago I haven't had a single seizure, despite the side effects.

I know there are always people out there worse off than ourselves, but it doesn't make it any fucking easier to live with your own situation every day, does it???

Over time will I come to think 'fuck it, It's gonna happen whether I like it or not. Don't really give a shit any more. It's a seizure. I look and sound a bit of a twat for about 30 secs and then its over'? but then my meds might control my seizures to the point that my hand only twitches and I feel a bit dizzy and no one will even notice. Who knows?

All I know is that I fucking HATE them and being told I will have to live with these fuckers for the rest of my life is fucking depressing la la.

Topiramate is not my mate!!

2010-05-11T19:53:00.003+01:00

Lots seem to have gone on since my last med update.
Side effects on Topiramate:
1st: I had headaches which have decreased in intensity, but are still there. Tiredness came in with a whack and has decreased slightly but is still dragging me down big time!!
2nd: Increased dose, the above side effects + the next lot of side effects: difficulty sleeping, waking up regularly, vivid dreams and shouting out in my sleep.
My consultant said to see how it goes before discontinuing the drug as the side effects may decrease and may become manageable!
3rd: Increase dose again, all the above side effects + more side effects: Difficulty concentrating, unable to multi task, difficulty finding words, short term memory problems etc oh and even more tiredness!!
so emailed my consultant and said ENOUGH NOW, what's the plan?
I'm soooo tired I can barley keep my eyes open half the time!!

Having the choice

2010-05-11T19:34:00.007+01:00

Do I to drive?
Do I to what medication? to what treatment?
Do I to have another child?
Do I to having seizure's?
Do I of a job?
Do I to a life?

Do I have the choice?........Do I REALLY????

It's a shitter....

2010-05-01T19:02:00.003+01:00

....Not to dwell on things, but it is a right shitter having a brain tumour. I'm having a bit of a crappy, shitty and basically fucking poo time thinking about the future and all the tumour type things that will and can happen to me. All the things that can't happen and won't happen in my and my families future because of my tumour bla bla, etc etc.
This happens every now and again, tears my heart apart, makes me cry and then I just sort of get on with it.
Maybe its all this epilepsy stuff that's brought it all on this time. I think being on hols gives you the time and space to think as well. Maybe it's just me being a 'dick'

Gutted!!

2010-04-25T13:51:00.002+01:00

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??

2010-04-22T21:35:00.002+01:00

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

2010-04-13T20:42:00.004+01:00

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

2010-04-13T20:38:00.004+01:00

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

2010-04-01T21:38:00.003+01:00

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!!

P.s ...........

2010-03-24T20:22:00.000Z

No seizures for a week either :-)

Quote of the day

2010-03-24T19:46:00.002Z

Remember to remind your children that you love them, even when they are being little shits. Don't just assume that they already know.

Things are looking up

2010-03-24T19:15:00.002Z

My headaches and tiredness have subsided. My energy levels are finally starting to come back. For the last few months I haven't been able to do practically anything after 2pm because of my tiredness and energy levels being so crap. So to be able to cook my boys dinner two days in a row has been fab. I know it doesn't seem like much, but it is for me. Lee has been fab with doing everything to help me out for more than the last few months.
I'm no where near normal with my energy levels etc, but at least I'm getting closer.
Had a full on day, doing everything with Jamie and I asked him "what was the best thing about your day Jamie?" and he said "Daddy coming home" yeah thanks Jamie :-) I am bloody knackered tho and could go to sleep right now.

Anyway I said I'd keep you up to date with the weight thing. Well I'm really chuffed to tell you, I've lost 9lb in 5 weeks and that has nothing to do with my med's :-) and I'm still working really hard and get to my goal.

So far, not so good

2010-03-22T19:38:00.002Z

So far I've been having.....
Dull headaches, I'm even more tired and I have sore eyes at the end of every day. I am also getting tension headaches at the base of my skull and all this has been since I started Topiramate on Friday.
I have started on a low dose of 25mg just at pm. On Thursday I go up to 25mg am & pm. I will see how I go on 25mg am & pm, if things don't improve then I will get in contact with my consultant.

Quote of the day

2010-03-21T19:32:00.003Z

It doesn't matter what the day throws at us, as long as we have love, a smile and a hug to get us through it.

I'm positive, yet realistic

2010-03-18T17:28:00.003Z

When I start a new drug, I'm always in two minds.
Excited that this could be the one that sorts out my seizures and improves my quality of life. Dread, that I could suffer loads of new side effects that will make me feel like utter shit and have to put up with it for a week or so.
My consultant say's I should give any new drug a week or so, to see if my body adapts to the drug or not.

New drug 'Tropiramate' (drug#5)

2010-03-18T16:57:00.006Z

Start a new drug tomorrow called 'Tropiramate' lets hope he is my mate!!!

Main side effects: weakness, tiredness, dizziness, pins and needles! loss of appetite and weight loss.
Report promptly: unsteadiness, slowing or shakiness, speech problems, mental/mood changes, stomach/abdominal pain
Unlikely but report promptly: itching, trouble or rapid breathing, fast/slow or irregular heart beat, loss of consciousness, fever.
Rare but very serious: Eye problems can occur suddenly. Vision change/blurred vision, eye pain or redness.
Other: Risk of kidney stones.

So far with all the previous drugs I've tried, I've gotten between 1-4 of the main/most common side effects.
Lets keep everything crossed that this one ' Topiramate' is my mate and I don't have any side effects.
I said to Lee the only side effect I won't get is weight loss!!!
Staying on good old 'Lamotrigine' (drug#3) as my base line drug. Till I know what this new drug is like.

Will keep you updated

Quote of the day

2010-03-18T16:51:00.001Z

Life is what you make it
~ Jane Shann 2010

They never tell you anything!

2010-03-14T19:57:00.002Z

I was thinking today, there may be people who have just been diagnosed with a brain tumour reading my blog! When I was first diagnosed I got on the Internet to find out as much as I could about my type of tumour as I expect most newly diagnosed tumour patients do. I looked everywhere for info on my type of tumour, what would happen to me, how it would affect me, how long I'd live for, types of treatment, surgery etc etc. I would google all sorts of tumour related stuff, just to read something concrete! I didn't want to find out about other peoples tumours and what other people were going through. This was MY nightmare, this was happening to ME, I just wanted to get on with it and do it my way. I have never dealt with things like everyone else, never done things like everyone else, don't see things the same way as everyone else, so how could I relate to anyone else? so NO THANK YOU. I know a lot of people find comfort in chatting to other people going through a similar experience, but not me. I found a lot of 'God' related things and what people believe can 'heal' them! but that's not for me either.
When all is said and done, there are NO ANSWERS not with my kind of tumour anyway. At the hospital all the doc's, consultants and surgeons can say is the possibilities! or they just simply say 'we can't tell you' The trouble with the brain is, there is still a lot they don't know! and I've come to realise that everyone's tumour is individual to that person, no two tumours are the same. So how your tumour grows, develops or kills you isn't something they can predict or even guess at. Reading stats on survival rates makes you realise there are no stats! survival rates being anything from 2yrs-20yrs, it all depends on what your tumour decides to do.
I thought at first that because my tumour was a grade II (benign) or slow growing that I was lucky that I didn't have cancer or wouldn't have any of the treatments for cancer. When they told me later on that it was too risky to operate, I thought well what happens then? does it keep growing till it runs out of room? what will happen to the rest of my brain? Will i end up with an elephant man type head? so in my next appointment with my consultant I asked the questions and she said oh, no none of that will happen. It will develop into a malignant tumour, but we don't know when it will, but it will eventually. That's why we scan you so often, to check its not changing. Well that was a bit of a SHOCKER, because after diagnosis a month earlier NO ONE had even mentioned that!! as if that was obvious or something!!!! and then I had to learn to come to terms with that part as well. So I would have to deal with cancer and all the treatments after all, well at some point anyway!! That's why a lot a medical professionals, researchers etc label all brain tumours except grade I (doesn't grow or change) as 'Brain Cancer' they don't tend to use the term benign or malignant and tend to refer to the grading system instead. So yep I have 'Brain Cancer' just not the immediately life threatening kind.
So if someone else looking for answers comes across my blog, then I hope it helps them in some way or another. Most people will probably think 'what the fuck is this girl on? I just don't get it' but like I said I don't think or do things like 'everybody else' and like my blog says 'I'm just Jane'

The rest of my week

2010-03-14T17:54:00.004Z

My week didn't get much better! shocker!!!
Had shitty side affects from my drugs all week. The best bit was mum coming round every day after work to do Jamie's bath and put him to bed for me, which gave that little bit of much needed help at the end of the day. It was also great to have someone to chat to at the end of my day.

Wednesday:
Jamie was ill on the Wednesday, he had a bad cough and a temperature. It was the start of a bad cold, he was really poorly for a day and then just snotty and a slight cough after that! Jamie is like Lee, what ever the illness it only lasts 24-48hrs they both have super immune systems. Then there's me, I get everything going and then it's 3 times as bad and lasts 3 times as long. Its not a tumour thing I've always been that way. See I am a lucky lady!!
Thursday:
Big seizure in the morning (at breakfast again). Did our usual Thurs things, visited auntie Louise for lunch etc etc Had another big seizure in the evening. That was basically it.
Friday:
An emotional day. Was fucked off that another week had gone by without any of my 'medical' people getting back to me! I had rang my consultants secretary Tues and wed. She said that she'd passed on the messages and that's all she could do. My support nurse still hadn't gotten back to me and it had been over a week since I had left her a message. So I rang my support nurse again, no answer (again) so left a shitty, slightly cryey and emotional message. I basically said 'I've had another week on these shitty drugs with all these shitty side affects, I rang you for advice and support....what support, no one has rung me back, no one gives a shit and I don't want to deal with yet another weekend of all this crap and then wait for someone to get back to me on Monday'.
The thing is with my support nurses is that, since my diagnosis they have rarely if ever answered the phone and I always have to speak to their answer machine. They rarely get back to me. I think there has only been one occasion that they've actually answered the phone when I've rang them. So it wasn't a case of 'well they are normally really good, so I sure they will get back to me' its a case of 'I'm not putting up with this bollocks, they are meant to be my support nurses' anyway, so that was about 10am.
Then about 11ish my consultant rang me (over a week after I first left her a message) She apologised and I thought 'I'm not making it easy for her, I'm not saying oh that's okay, when its not fucking okay' so I just said well its been really horrible for me and NO ONE has bothered to ring me back and then the conversation went from there.
She said to come off my drugs straight away. I was on the lowest dose anyway, so I could do that. That was common sense really, but I couldn't do that myself without my consultants say so, otherwise I would have done that the week before. Anyway, I should then let my body stabilise on my existing drugs and then they will add in another new drug in a weeks time (that will be drug #5). So I feel much better now that's in the pipe line and will be ready to go, in a weeks time.
My support nurse did finally get back to me in the afternoon, I gave her some shit (in a nice-ish way!!) said it doesn't matter now and thanked her for getting back to me! and that was that.
Lee came back Friday afternoon and I was so so so pleased to see him, I can't tell you. Jamie almost wet himself with excitement, he adores Lee and he said 'I miss my daddy so much' at least 10 times a day in the week Lee was away. Louise had Jamie for a sleep over that night. So that was a perfect end too a MEGA shitty shitty week.
Lee had a shitty week too with stresses at work and a 48hr mutant bug thing. Oh and to make the week even worse for us both Lee had no signal on his phone where he was staying, so we hardly spoke to each other all week.
But its all over now. I've been off my shitty drugs since Friday and I'm already feeling better. Lee has this coming week off, so hopefully it will be a good week for us all. Jamie is all 'my daddy, my daddy, my daddy.....mummy who?' already. I don't mind, I think its fab that they have a lot of fun and do 'boy things' together. My boys are close, which is fantastic as a lot of dads don't really bother with their kids until their older, if at all! which I think is so sad. Anyway its also good as when I'm not around they will already have a good bond and a have built a close relationship/friendship.
Anyway think I've gone on enough now. Ta Ta and a bit of skipping :-)

What a shit week

2010-03-09T20:35:00.004Z

So far my week is SHIT.
I am really struggling on my new meds. Extreme tiredness and headaches which really grind me down. Lee is away with work which makes everything twice as hard!
I went to bed with a mega headache and woke up this morning with a mega headache and still feeling tired and drained. Even tho I'd just had 9hrs sleep!
Had a big seizure at breakfast (the biggest I've ever had) and felt really out of it for quite a while afterwards. Which made me feel even more drained. Unfortunately I had the seizure in front of Jamie as we were sat having breakfast together. I pre-warned him that I was going to have a 'dizzy headache' and that I wouldn't be able to talk to him. So that he wouldn't be scared or worried.
When I have a really bad seizure saliver builds up in my throat and makes a raspy, chokey sound and after my seizure had subsided Jamie said 'is that the sound of your blender mummy?' and he said it in all seriousness. He is really into the noise's that, machines (shredders, blenders etc), cars, hovercrafts and trains make. I just laughed, so did he and we had a good giggle. He didn't seem upset or bothered by it all, which made it a bit better for me. I still cried a little later, when Jamie wasn't around tho.
I was feeling soooo shit that I had to ring my mum at work and ask her to come around to help me and look after Jamie. I am really lucky that my mum will drop anything to help me and love me better. My sister Louise is also having Jamie for a sleep over tomorrow night. Where would I be without the love of my two girls to help me out and love me better!? I feel guilty and useless for asking people to help me, but sometimes I just have to.
My support nurse never got back to me (great support!!) and my consultant is ment to be getting back to me tomorrow to talk about meds and what to do next. Lets hope she does, so I can get off these nightmare pills.
My week can only get better from here or at least lets hope so! Don't know what I'm doing typing on here I should be in bed.
Nighty night.

First week on the new drugs

2010-03-03T09:41:00.004Z

New drugs are doing my head in (literally)
I am even more tired than normal, everything seems like such an effort and all I wanna do is sleep. I've had dull headaches on & off. Dizziness from mild to OMG I'm really pissed!! Feeling sicky, oh and yesterday I had double vision for most of the morning (quite scary)
All this feels like a cross between being really drunk and the morning after, when you have a REALLY BAD hangover and your still slightly pissed!
Yesterday I thought I'd put a bit of slap on to make myself feel a bit more human and I managed to poke my eye out with the mascara brush and ended up with mascara all under my eyes! (that look is so 'in' this season) :-)

My body seems to be adjusting to the drugs slowly! but I can't really tell. My consultant said to give it 2 weeks as it will be tough for the first couple of weeks. Tough could mean anything tho and I'm not sure if I'm meant to feel this bad! 1 week to go, but not sure if I want to do the next one. Am gonna ring my support nurse and see what she says.
The trouble is with epilepsy drugs is that you can't just start taking them, then stop taking them if they don't suit you. You have to build up slowly and wean off the slowly! Its shitty :-(
Another crap thing is that I'm having to lean on people even more for help, which isn't good either.

Must be my fault

2010-02-27T20:51:00.006Z

Coz I believe everything happens for a reason, I started to think all this must be my fault.

It may be bad stuff I've done, maybe its because of the way I've unintentionally treated/hurt people or being a horrible person without realising it. Maybe it's pay back or maybe it's 'what goes around comes around'. Could it be something i did as a kid but can't remember?
It must be my fault, as why me? its like being fat, being an alcoholic or being a gambler etc etc people don't take responsibility for what they are. There is always someone else to blame. No one seems to blame themselves. Maybe I should take responsibility and blame myself.

I started drinking & smoking at age 13. Smoked for 13yrs, getting mega pissed (wasted) till the age of 26! did things when drunk that I can't remember, treated people like shit when I was pissed, became a person I really hated! maybe all this crap pickled my brain and it couldn't cope with the years of abuse. Doing all this people may think lung cancer, heart attack or even liver failure, why not brain tumour?? All the years of abuse must of done something to my body.
That makes more sense to me than 'your just unlucky'.
So yeah, why not!! 'why me?' well I know why me really, I've just got to take responsibility.

I know people say "it's not your fault". But come on, it's gotta be someones!!

Ask yourself....

2010-02-24T10:33:00.006Z

When you feel that nobody loves you,
Nobody cares for you,
Everyone is ignoring you,
and people are jealous of you
you should really ask yourself.....

AM I TOO SEXY?

New starts!!

2010-02-24T09:40:00.004Z

Started new meds (oxcarbazine) and new diet (kcal's) today
Thought yeah 'positive new starts' and then I had a big seizure this morning. So yeah, great start!!!

When you've never really been aware of the calories, its a shocker when you look. Somethings I thought 'OMG how many? and I eat that all the time' and others I thought 'yeah that sounds about right'. Previously I didn't look at kcal especially on biscuits, choc, pizza and things like that, as it would of spoilt my enjoyment of eating it! But now it will make me think :-(
My tea is 11kcal! (no sugar, semi-skimmed) I was very surprised at that. And considering I drink between 10-15 cups a day, that's a lot of little extra Cal's I need to account for! But I can't give up my tea, drink less or have skimmed milk. So it looks like I will be living off tea and carrots :-)

I have been on a bit of a downer for a while (hence no blog posts) and I do normally get on my blog and have a good old rant, but I haven't even wanted to do that. I have just gone in on myself a bit and doing my hiding away thing again (not that anyone notices).
Anyway I'm not looking for the sympathy vote. Just saying.

Should know in a couple of weeks whether oxcarbazine suits me or not! I really hope this drug does it this time round, as this is drug no.4.
The tiredness on lamotrigine is doing my head in, so the sooner I get off it the happier I will be. The main side affects on oxcarbazine are headaches and tiredness!! but fingers crossed I won't suffer from ANY side affects.

Will keep updating on diet and meds as I go.

Downer mode

2010-02-18T22:17:00.002Z

Have been on a bit of a downer about things lately! it seems to start around scan and results time and then carries on for a few weeks after. I also feel constantly tired with no energy, which doesn't help.
Hopefully the tiredness stuff will all change when I switch meds.
Will be back on here soon to chat out my shit......la la.

The Results

2010-02-10T09:53:00.003Z

Just a quick update as I don't really feel like writing on my blog at the moment.
Scan: Showed NO CHANGE and they will re-scan me in 6 mnths time
Treatment Plan: Change meds to get better seizure control and to improve day to day life for me. Because at the moment I am constantly tired even with 9 hrs sleep every night and am also having daily seizures. So changing from lamotrigine to Oxcarbazepine, it should take about 2 mnths if I have no side effects.
So BEST RESULTS I could of hoped for really.
Thanks to you all for wishing me luck and loving me better :-)

No Such Cupboard!

2010-02-04T15:15:00.004Z

I just wanna shut myself away in a cupboard until.....
I lose 2 stone.
My tumour curls up, dies and falls out my ear.
My house is all nicely decorated, all new and completely finished.
But apparently there is no such cupboard! so I will have to come up with another cunning plan!!

Tumour's gonna get ya

2010-02-03T10:40:00.004Z

Had my earlier scan this week.
My results appointment has been brought forward to Tues 9th Feb (next week).
My final will came through the post this morning and they said they hurried the process along in light of my illness.
My dizziness is becoming more frequent.

It feels like all these things are saying to me 'tumour's gonna get ya, tumour's gonna get ya'
Also why do people have to say "your illness" "your ill" "your cancer"?? I know it describes what it is and I've gotten used to and accepted that I have a brain tumour and that it will shorten my life. But I don't think of myself as 'being ill' or 'having cancer'
If that makes me in 'denial' then....... whatever!!!

I'm feeling really down today :-(

JUST DON'T

2010-01-30T21:26:00.003Z

Don't feel sorry for me
Don't feel responsible
Don't feel guilty
Don't speak to me
JUST DON'T

Its one of those big bastard weeks

2010-01-29T14:14:00.002Z

I don't feel like anything good can come of this week!

I haven't weighed myself for 5 months. Reason being that since time began, I have had body image and weight issue's. After my diagnosis I was sooooooo worried about putting on loads of weight and losing my shape (mainly due to inactivity). But after about 6 months I thought 'life is too short to keep beating yourself up about your weight and how you look' so I decided to stop weighing myself and tried to be more comfortable in my own skin for once.
A fat lot of good that did me!!! I've put on over a stone, feel really rubbish and depressed about myself.

Thinking about the amount I've been through in the last year, people may think 'So you've put on a bit of weight, whats the big deal? things could be a lot worse for you' but my weight has always been a big deal to me (ALWAYS) and has influenced a lot of stuff in my life.
I don't wanna be this way. I wish I could be a person that was comfortable with their self and didn't worry about the whole weight thing. Its sad, I'm a sado!! But at the same time its been a struggle for all of my adult life to keep my weight under control. I really struggled with the whole body image thing when I was a teenager and that has never left me. I wish that someone could re-programme that part of my brain!!!!

I never really talk to anyone about it, coz I know its boring, no one is interested and everyone has their own issues to deal with anyway! But I do talk to Lee and Louise about weight stuff and how I feel. They probably get a bit pissed at me!! But I wouldn't want to and don't talk about it to anyone else.

Moan over. Bottom line is that I realised this week how fat I had gotten :-(

Read this Today

2010-01-27T21:38:00.004Z

As yet, there is no cure for brain tumours. But, say campaigners, greater awareness of the illness will lead to more support, increased funding for research and better outcomes for all whose lives are touched by this devastating disease.

Depressed that I am living with a devastating disease that can not be cured......la la

Mega Down Day

2010-01-27T18:59:00.002Z

On a bit of a downer today because........

Thinking about my scan
Filling out an application form for a will, thinking about dying & what I would leave people
Thinking about what it would/could be like for my boys after I've gone!
Thinking about results of my scan & having dreams about them not being good
Feeling like the scabbiest arse hole in the world
Thinking & feeling crap hair, minging clothes and hairy bits!
Thinking about having a brain tumour and what that means to my life and my future.
Thinking how people might see me now!
Feeling like a tumour twat (again)
Feeling fat & flabby
Not having good sleep
Still having bad seizures

...... You know, all the normal crap.

Haven't thought about the whole 'tumour thing' for a while! coz you just sort of get on with life, what else can you do? But every now & then it really hits home again.

My Hair Styles

2010-01-27T18:39:00.008Z

I have had MANY different hairstyles over the years (all through choice).
I haven't got photo's of all of them but here are a few :-)

Quote of the day

2010-01-27T16:28:00.001Z

The most wasted of all days is one without laughter
~ E E Cummings

Cbeebies Rap 5

2010-01-27T15:59:00.003Z

These number raps always make me smile :-)

Some Good Bits

2010-01-24T10:29:00.005Z

Feeling very happy & lucky to be me.
My boys are gorgeous and I am lucky to have them. All my family have learnt to be in dependant, brave and happy. Because for a while now I haven't been doing it all for them and trying to fix everything, which for years I did. Am happy they managed to swim and didn't sink when I did this.

Also I have recently come to realise that I'm not as gross as I've always thought i was! I don't love myself now, but am getting comfortable in my own skin. Which is weird but good :-) (but this issue is a whole other post)

I suppose everything is coming together like I hoped it would in my 30's. Just not as I expected it to.

December 2009

2010-01-22T13:53:00.006Z

Better than my ill depressing photo's from December 2008. Spread the happiness :-)

Back on the trike today

2010-01-22T11:01:00.005Z

I forgot how much I love being out on my trike. It was good to get out and about on it again today. Still some stupid dicks on the road tho. I am even more cautious now than before, because of the near miss before Xmas. I am checking that roundabouts are totally clear of all cars before I cross over them and checking and slowing down at every side road. I don't think its a case of them not seeing me (as I'm high vis'd up to the max) its a case of them not checking or even looking.
Some woman this morning reversed really quickly out of her drive way and didn't see me until after I had completely passed her! I can't check every drive way too!!!
Oh well, I will just have to get used to people nearly running me over I spose.

Friends come and go

2010-01-17T11:26:00.008Z

When something major happens in your life, its hard when you find out who your real friends are. I keep going back to this, but it's something that has really hit me and something I still think about. Not all the time, but every now and again it pops back into my head and it makes me sad and upset and today is one of those days.

I don't think 'selfish, horrible people, they blatantly didn't/don't really care about me and I'm better off without them' I think 'maybe I should email or text them, find out how they are, maybe it was really hard for them and maybe it makes them sad we don't see each other anymore.......'
But in reality they don't care! and I should think and believe that. But it's tragic to think that these people I did/do deeply care about, can't be there for me or even at least try. Even to try and understand how I might be feeling or even what I might need from our friendship. It fucking sucks that they don't even try!

Or maybe, it has given them all an excuse to 'dump me/phase me out' Or maybe I was only a good friend when I was being there for them! making all the effort and now I'm dead wood coz I can't be that kinda friend for them anymore. Maybe it is me! it can't be them, as I've lost more than one friend since being diagnosed!!!

I know that everyone has their own lives to live and maybe I just don't fit into that anymore. I understand that everyone has their own little 'soap operas' called 'life' going on and I've got mine. But its sad that I can't just appear in an episode of theirs every now and then and they in mine. Have I been killed off and never to return? or am I like Den Watts everyone thinks he's dead, no body was found and then he returns years later? (on a random there!)

Get over yourself, its been a year. So your friends have gone, make new ones. So you've got a brain tumour, deal with it. So your sad sometimes, aren't we all. So you feel afraid of the future, aren't most people. So you feel neglected and lonely, you've got your family so whats the problem?
SO WHAT IS THE PROBLEM????????

Mum quote: 'Friends come and go but family are for life'
She always said this when me and my sister used to pick friends over each other, be horrible and fall out. But she'd change it to.....'Friends come and go but sisters are for life'
When I was younger I used to think what a load of bollocks! But the funny thing is that, we are best friends now and we are always there for each other. Not because we have to, but because we choose and want to be. So I guess my mum was right!
But I also believe friends should be & are important too.

How are you?

2010-01-12T18:39:00.004Z

When people ask 'how are you?' we always say 'yeah alright' but do they really want to know how you are? 90% of the time they don't (this excludes family)
Can you imagine if I actually said how I was! can you imagine their horror?
I say 'Yeah alright' but what I actually wanna say is 'Bit shit really. My seizures have been bad. I've lost all my confidence. I'm constantly tired and I feel crap coz I eat crap...Got any cake?'

Some people don't wanna ask that question, just in case you do actually tell them how you are. So instead they just avoid you!!
I don't tell people the truth about how I am. I don't suppose many of us do!
Maybe its just something that people say after hello and are not actually asking the question. To avoid the next 'going through the motions' questions. 'So hows your seizures?' 'whens your next scan?' etc etc I do just say 'yeah alright' and then ask them questions about how they are! This normally works and makes some people feel relieved I didn't go into it all.

Sometimes I feel like saying 'well how the fuck do you think I'm doing?'
A lot of the time I don't wanna have to go into an explanation after being asked 'going through the motions questions'
Saying that, Most of the time I do wanna just say 'yeah I'm alright' because then I don't have to go into everything. To explain to people what its like for me or how my day or week has been. I don't have to talk about it or make them feel uncomfortable if I tell the reality of how I actually am.

Other than family I very rarely see anyone anyway (That's not through choice, just the way it works out) So why should I care about the going through the motions questions??

Its when I get texts and the occasional email asking 'how are you?' I want to respond by saying 'well why don't you pop over for a cuppa if your that bothered? or 'I'm lonely and have lost all my friends and wish people wanted to spend time with me, but they don't'......But hey I'll live, or maybe not, or maybe just for a bit!!

I'm not trying to make people feel sorry for me or even play the poor little Jane card. No one apart from family pop in for a cuppa or ask me to theirs. But hey, who'd pop in for a brew after reading this 'don't fucking ask me how I am' post! :-)

Can't start the New Year!!

2010-01-10T20:17:00.004Z

This week I've not been out! only a couple of times with Lee and Jamie. I've had a couple of bad seizures this week (worst today) and with the snow I've shut myself away from the world. I know loads of people have stayed in this week coz of the snow and I'm probably no different!!

I've been on a bit of a downer all week and I feel I can't plan anything or start my New Year until I get my scan and results appointment out of the way. At least then, results being good or bad I can get on and start my 2010.
I've also been stuck in the thinking of 'this time last year' mode as well, which doesn't help. Sometimes I just feel like such a dick and I'm sure I've said this before. But it's hard not to think 'stop being a dick and just get on with it!' or 'I hate being a brain tumour twat' not being able to drive, having seizures, losing my confidence and the list goes on.....
I'm not saying that people with brain tumours r twats, but that's how I feel about myself and how my tumour is affecting my life.

Its things like Xmas and New Year's that bring it all home again!!
Fucking hate it and want it all to go away. Its been a fuck fuckedy fuck day today :-(