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!

P.s........

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!

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

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

Facing another week of struggle!

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.........

.......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!

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.......

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

1. I only have salt on eggs & mash
2. I don't eat chewing gum
3. I can only enjoy a cheesecake if I eat it with a fork (not a spoon)
4. I don't drink coffee
5. I drink around 15 cups of tea a day (that's an obvious one to people who know me)
6. I had size 4 feet before I had Jamie but now I am a size 5
7. I have been every size between a size 8-18
8. I hate marmite
9. I wipe from the front
10. I am neurotic about my hair
11. I have had eczema since I was a baby
12. I sleep on the left
13. I have a scar near my left eye where I had a sever plucking accident when I was a teenager
14. Favourite cake is carrot cake
15. My hands are really cold right now
16. Never owned a goldfish
17. I love cheese on toast
18. I don't like takeaways
19. I can't stand Mcdonalds (I call it Mc shit)
20. The only flavour milkshake I like is Vanilla
21. I got married when I was 22yrs old
22. I got my ears pierced when I was 6yrs old
23. I'm 5ft 1 and have been since I was 12
24. I love PIZZA but only margarita's
25. I smoked for 13yrs
26. Gave up biting my nails when I gave up smoking!!!
27. I pick and eat my boogies, not not snotty one's (and i'm not ashamed to admitt it)
28. I have a brother....I know!!!
29. I LOVE tea
30. I was bullied at secondary school
31. I LOVE Cadburys dairy milk chocolate, love it, love it
32. I can't stand full fat milk
33. I lost my virginity at 15yrs old (not proud of that!)
34. I shaved all my hair off and had a skin head for 3 years (hair dresser fucked up my hair)
35. 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
36. 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.
37. Don't like spicy food
38. I LOVE icecream (Proper Italian icecream is my favourite)
39. Used to be a fitness & aerobics instructor
40. I have owned a smart car (loved it)
41. Can't drive any more
42. My birthday is in October
43. My dad died of a sudden heart attack when I was 26
44. I have never mowed a lawn or used a lawn mower
45. I am always hoping someone will make me a tea
46. I LOVE my sleep and lay ins
47. Longest distance I've ran in one go is 10km
48. I HATE anything pink
49. I had piano lessons when I was younger
50. I lived in Devon for 8yrs (hated it)
51. 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
52. I HATE maggots. Some people are scared of spiders etc and freak out. Well I feel that way about maggots.
53. I like mint feast's (icecream lolly)
54. I got engaged at the top of the Iffel Tower
55. I'm the oldest child in our family (3 of us)
56. I think Simon Cowell is so so wrong!!!!!
57. I used to have weebles and a little swing for them when I was little (absolutely loved them)
58. I've had double pneumonia
59. I sleep with one pillow
60. I have lived in a pub
61. My maiden name was Sutton
62. I was born in Luton
63. The colours my hair have been: black, all shades of brown, blonde and electric blue
64. I don't read books, only fact ones when I need to.
65. I studied Graphic design at college
66. I've drawn naked people (life drawing class)
67. I have blue eyes
68. I wrote in my school book when I was about 8 that when I grew up I wanted to be an electrician
69. I only brush my teeth once a day
70. I have to have mayo with chips otherwise I can't/won't eat them
71. I only eat salad cream with fish fingers
72. I CAN NOT drink pissy tea
73. I'm scared of the dark
74. I don't watch any soaps (as in programmes! not the washing hand kind)
75. I'm allergic to 1 type of banana milkshake
76. Passed my driving test 3rd time
77. Can't and won't each anything slimey
78. Can't and don't drink alcohol any more
79. Don't like white chocolate
80. I don't like beans with any main meal, just on toast or in a jacket potato
81. I've ALWAYS wanted to be REALLY SUPER skinny
82. I had the same stats as Sam Fox when she was a page 3 model when I was 14
83. I can't stand 'the green balloon club' it makes me wanna vom
84. I have had all of my little lady waxed before
85. I first got drunk when I was 12
86. I don't eat ketchup
87. Put on 4 stone when I was pregnant
88. I text when I'm on the toilet
89. I hate my hair
90. I've never done a crossword
91. I NEVER share chocolate (seriously)
92. I have 2 tattoo's. One I like and One I hate
93. I don't own a pair of flip flops (donated by Louise)
94. I don't mind crisps, but I prefere not to eat them (donated by mum)
95. My sister is my best friend, she hopes :-) (donated by Louise)
96. I have 17 cousins and Lena is the bestest (donated by mum, adapted by me and my mum corrected by Lena)
97. My top 3 favourite swear words: Fuck (& all in the family of fuck. E.g fucker, fucking, fuckedy etc) Shit and Twat.
98. 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)
99. I used to call all children 'Aliens' (donated by Lena, yeah thanks for that one cous!!!)
100. 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.....

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

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

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

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

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

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

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

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

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

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

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

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!!

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

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....

....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!!

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

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

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

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

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

Who was I kidding??

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

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

Been a bit crappy

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

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

Quote of the day

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

The latest

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

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

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

No seizures for a week either :-)

Quote of the day

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

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

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

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

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)

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

Life is what you make it
~ Jane Shann 2010

They never tell you anything!

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

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

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

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

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....

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!!

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

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

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!

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

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

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

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

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

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

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

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

Cbeebies Rap 5

These number raps always make me smile :-)

Some Good Bits

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

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

Back on the trike today

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

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?

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!!

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 :-(

Snow or what?

Jamie in the snow (loved it)

I obviously didn't make it to my hospital appointment today. I said to Lee this morning that its not worth the risk of trying to get up the JR. It turned out that they had cancelled all the out patient appointments anyway.

Jamie's school was shut. Sainsbury's was out of fruit, veg and milk! Don't think the delivery trucks got there. That or people r going a bit loopy and buying in the supplies for when they get snowed in! (for like a month???).
We forgot to get T bags which is dire in r house. Anyone who knows us, knows how much T me and Lee drink (A bus load a day) But my mum and sister came to the rescue, they waded through the snow with T bags in hand and saved the day. Couldn't survive without T and just think If we got snowed in with no T bags (it even doesn't bare thinking about!!)

Feeling a bit less down today, think its because Lee has been at home. It's cold long days like this that I wish I could sit down with a bottle of wine and warm my cockles!!

Hope its not as bad tommorrow, can't face a whole day in with Jamie!

I've been mooooody

Just want one long lay in!!
I'm having a really tired spell, which normally happens when I don't have a proper lay in for a couple of weeks.

I have been feeling a bit down the last few day's. So think I'm on a bit of a self destruct mode Haven't wanted to go out. Sat in troffing the rest of the chocolate left from Xmas and not being bothered about getting off the sofa to do anything.

Got a hospital appointment tommorra, it's just to discuss how my seizures have been. A bit of a waste of time really, as I don't see what she can do until I have my scan.
I got my scan date through yesterday, Monday February 1st. That's a bit crap too as I won't get my scan results for a couple of weeks after. Why can't they do all of them at the same time? the whole thing just pisses me right off. Its not that I get nervous or upset when going for appointments. I just get sooooo annoyed with the whole process and all it does is make me think about all the bad shit that could happen to me and the worst case scenario.