The Happy Person

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

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

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

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

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!!!!

*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

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

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!