December

Me & Jamie December 2008 (last year, couple of days after my biopsy)

December has been a bit weird really! Shit in some ways and fantastic in others.
The Shit bit....
Its all the crap memories from this time last year that makes it all a bit wanky!!! Shit in the fact that it is now a year since my diagnosis, so no more....'this time last year.....' reminisces of pre-tumour. The 22nd was a crap day, as that was the day last year that I was in hospital having my biopsy (had a little cry on the 22nd) Last year I missed Jamie's trip to see Santa coz I was still in hospital and I was only just out of hospital in time for Xmas. I was so poorly and drugged that I didn't know my arse from my elbow and slept right through most of Xmas & new year.
This December my seizures have been bad again! which has knocked my confidence down to an all time low. If I didn't have little Jamie, I wouldn't of gone out of the house!! I've done a lot of crying this December.
If my latest results, being constantly ill, really bad seizures and mega loss of confidence wasn't a big enough kick in the fanny! A stupid woman nearly ran her car into my trike on our way to Jamie's school. She just didn't look and pulled out. She had to do an emergency stop to avoid crashing into us. To set the scene........It was a fucking freezing morning, didn't wanna go on the trike anyway and felt guilty for Jamie having to go out in nightmare weather. We both had about 4 layers on. It was quite a dark morning, so I put on ALL my high vis stuff and switched on my super lights front and back. So I don't think I could of been anymore visible!! and to be fair we are much bigger than your average bike too. After the near miss the women just drove off!!
I had to compose myself and drop Jamie into school, but as soon as I came out I cried and cried. I just thought, if I didn't have this stupid tumour I wouldn't have to take Jamie out in all weathers on the trike. I was just thinking 'you stupid tumour twat, I hate it, I hate it.....' and that thought made me cry even more. I haven't been on my trike since, but then I haven't had to.
I wanted to stay in and not come out even before the near miss! so that just made it all worse.
I was thinking, that women wouldn't of even thought about me. It won't of even crossed her mind how tight it is having to go out on a trike in freezing weather, the reason why I might have to cycle, how things r already hard for me, how I had to get together what little confidence I had left just to leave the house that morning or even the impact of her crap driving has had on me and my little bit of Independence (going out on my trike) but hey! if she'd of stopped I think it would of made the situation a whole lot better.
Lee was away with work in Cornwall that week, but luckily Louise was there to wipe my tears, give me a big hug and love me better.
Lee told a few people what had happened and over Xmas they asked me about it, but in a jokey type way! and I felt like screaming at them 'fuck off, its not something to laugh about! would I be all jokey if the same thing happened to your in a car?'

The good bits......
Spending Xmas with my family. Having Xmas morning with just my boys. Helping Jamie unwrap the presents out of his stocking in our bed Xmas morning. Jamie being at the age he can understand and really enjoy Xmas and his birthday. Lee cooking loads of gorgeous food for us all. Making jewelry for presents and seeing them being loved and appreciated. Having Lee to myself without any distractions. Feeling loved. Seeing everyone unwrap the presents I brought for them. Seeing Jamie singing in his nativity play. Jamie wearing his little Xmas shirt, tie and waistcoat. Being grateful I'm around to see another Xmas and not to be ill or in hospital. Jamie turning 3.
Anyway Its been an emotional roller coaster!! and I suppose with the busy time that is Xmas and being ill with various viruses and colds etc since October. I just haven't been able or have the time to get on and update my blog.

'Happy New Year and lets hope its a good one......'
I'm not sure how I feel about it being 'A Happy New Year!' What pisses me off actually is all the people that sent me a generic text yesterday. Saying happy new year, bla, bla, bla. I'd rather they didn't bother, than send me a text they have sent everyone else in their address book. Its been a fucking crappy year for us and we'll start our new one with hospital appointments and scans. We could have a hard year a head of us and need to be brave, scared, lonely and all the crap in between. But the fact that nobody even acknowledged this or did us the decency of sending an individual text (which would of let us know that they are really thinking of us) is poo in a bucket really.
I know a lot of people find it hard to know what to say! So they just end up doing the generic text. But it doesn't matter what they say, its the fact that they tried that matters!
I know the new year is a focus on the positives, looking forward, new beginnings and all that. But other people can change the crap things in their lives or at least start trying. Give up smoking, lose weight, find a new job, start new relationships or end crap ones, have a baby etc etc But I can't change my situation, I can't go to 'tumour watchers', lose a pound or 2 a week off of my tumour and finally become a gold member and be tumour-less!! So it becomes hard to see all that 'Happy New Year' stuff.
I was thinking yesterday about all the people this time of year that, r in hospital, people that only have a short time to live, people that r on their own with no family or friends, all the old people that die this time of year because they can't afford to put their heating on, the homeless in this freezing weather, people that have to live with constant pain, people that have to watch someone they love die. I hope nobody sent them a generic text!!!! I thought of them with empathy and was thankful I am none of the above.

Anyway that about sums up my Xmas and new year. But when all is said and done I am sooooo glad I have a loving family to spend it all with (ups & downs)

OMG What a day

It's as if all the elements, karma, luck and anything else was all against me in unison today.
The morning started okay. But then I opened the front door! OMG could it have been any colder?? Me and Jamie froze are tits off on the trike and thats with full winter warmer gear on.

Well Jamie today! what can I say? Its as if someone had put a programme in his head saying 'be a complete little shit today and see what happens' oh and then I think it got stuck on repeat.
He has been completely ignoring me, shouting (making the loadest, screamy car noises ever) Spitting (the most grosse raspberries with saliva everywhere) including in my face. Refused to put any of his toys away for like half an hour. So I tidied all of them up and put them all in my room and didn't let him play with ANY toys. I think it was at this point it just all came out in tears and I said to Jamie I need to have some time on my own and went in my bedroom and cried a lot. His been doing a horrible fake loud laugh life all day, saying okey dokey to everything. When it's relentless it just gets you in the end.
I think because of the week I've had it just all seemed TOO much today!! (I wanted to scream, come on give me a break)
It seemed like he was just doing everything he could to be horrible. I try to remind myself of the bigger picture and that normally Jamie is a fun, loving, polite, sensitive, caring and considerate. He isn't being horrible he's just having an off/bad day.
Lee took over when he came home from work. Which I am sure was the last thing he wanted to do. But he did it anyway and thank god he did, love him :-)
Jamie was a complete nightmare at sainsburys, but we needed to go as we had no food. All I ended up buying was a massive pizza, cake, puddings and biscuits, oh and some milk. I can't have a few bottles of wine, so I eat crap instead.
My friend is having Jamie tomorra for me, to give me a break (Lee is at work)
So thanks Lucy :-) its very much appreciated
xxxxxx

Thanks

In all my ranting, going on and being wrapped up in my own pile of poo. I forgot to say thanks.
Thank you to ALL you lovely people for ringing and texting me on the 9th (results day) :-) for showing that your thinking of me and that you care. It does mean a lot.
I think its all the little things that matter, well they do to me.
Thanks and I know you love me really and I do you x

The day after the night before

Today was sad and depressing. Had a little cry in the morning. Told Jamie mummy was having a 'sad day' and that everyone has them from time to time and its okay to tell someone your having a sad day. He gave me so many hugs and kisses today and we spent most of the day snuggled up on the sofa. Love my little Jamie so much x x

Right!! lets get this shit over and done with

Not the best start to the week, ill again!
Got tonsillitis on Friday afternoon, was bed bound for the whole weekend. Could finally get out of bed on Monday stinking like a bum hole and having the furriest mouth ever. Managed to get to the docs and she put me on antibiotics (had a shower and brushed my teeth first) I've had quite a lot of tonsillitis in my days, so I know what it is when it arrives for a week end break!

MONDAY 8TH DECEMBER 2008 @ APPROX 8PM
Jane Shann was given her prognosis: Suspected low grade frontal lobe BRAIN TUMOUR
and those words are what changed my life forever.

Well this week TUESDAY 8TH DECEMBER ~ ONE YEAR LATER
Jane Shann one year on: No one remembered the anniversary of the biggest day of my life. Well Lee did (obviously) but didn't know what to say, if anything.
It not only made me remember what the whole day was like for Me, Lee and my family/friends.
But it has been like watching it all on DVD. Thinking about Lee having to tell everyone and seeing their reactions (even though I hasn't there!)

Me and Lee had spent the whole day in hospital waiting for my MRI scan from 10pm-6pm (my scan appointment was booked in @ 10am) Had my scan @ 6pm then me & lee went to the canteen and had cauliflower cheese and chips :-) for dinner and when we got back they told us. That's basically it with a few seizures and tests in between etc etc

I can now never say again 'this time last year I didn't know and i was doing this/that.........' It's just part of who I am now. How fucking depressing is that????
That's why I think the first year is a biggy.
Anyway lots of other stuff went on in my little pea wee brain, but can't be bothered to write it today!

WEDNESDAY 9TH DECEMBER 2009 (TODAY)
Went to get my results from my 6 monthly November scan today (just happened to fall on the day after the anniversary)
Anyway, it wasn't great! with all my positivity, being the deaf frog and deciding I was gonna live for another 25yrs and that I would be one of the lucky ones. Didn't make it good news.
So I was mortified to be told there had been a change. At first I thought 'yes! its finally started shrinking' as well as 'maybe it did fall out of my ear' But then I thought 'oh shit, how bad is it?'

They said that the cyst inside my tumour had grown, but that my actual tumour hadn't. They said they wouldn't normally see it as a problem, but because my seizures have changed and the bad ones have become more frequent they are a bit concerned.
As a result they want to scan me in 3 months time instead of 6months, to make sure nothing is going on in there since the last scan. This will all happen in Feb and will also get the results then too.
Worst case scenario: a change in activity will be shown and I will have to start some kind of treatment. Best case: no change in activity, lets see how your seizures go and its okay to see you in another 6 months time.
So I now have to wait 3 months to find that out.
But hey ho. I've cried a lot today, but I will be over feeling upset, robbed and cryey by tomorrow.
My comments of the day:
Fuckers
Bum hole
Love cauliflower cheese but not hungry enough to eat it
Mirrors in lifts always make me laugh
Smelly arse holes
Can I have a strong cup of tea
I can't believe NO ONE text Lee today
Ooohhhh carrot cake gotta have a bit
So what does that mean
Why am I always ill
It's so lovely to see you
thanks for looking after my little man
give us a cuddle

Anyway I'm putting this shite day to bed.

Whats what

Just imagine if you could tell everyone the truth about what you are really thinking!!
When your mum came round 'I don't really wanna chat, but can you do my housework'
When you see some woman treating her kids like dogs! 'what the fuck are you doing you silly women, what sort of adults do you think they will grow up to be if you treat them like that?'
When someone makes you a really pissy cup of tea 'what is this cup of piss? take it back and make me a really nice one' (I do actually say that, but in a more tactful and nice way...I hope!) When people say 'your so lucky to be a stay at home mum and not have to work or worry about money' 'well if you had a tumour you'd be lucky too, fuck wit'. When people say 'wow your house is big, wow you have a big tele' 'well so would you if your life insurance paid out, fuck wit'
I think I would be calling people fuck wit a lot!!! Here I go, on a winge again!!

Its just people keep asking me 'have you had your results yet?' 'when do you get your results?' I don't mind people asking me at all, it shows they are thinking about me and care about me. But OMG I shit you not, the same person will ask me every time I see them or text me every week asking the same questions. Even tho I have told them more than 3 times the date I get my results. It fucks me off coz I think, I have told you 50 times already and if you cared you'd fucking remember, so stop fucking asking me. It ends up having the opposite affect of me thinking they care.
I will then go through getting my results and all the crap that comes with that. Then days/weeks later people will ask me the same questions 'have you had your results yet?' 'when do you get your results?' for fuck sake...I have told you 50 times already...work it out for yourself.....do you really give a shit? or have you just got so used to saying it? is it just an outomatic jane thing? like 'hi hows you?'
Should I get a t-shirt printed with 'I get my results on the 9th of Dec, so stop fucking asking me again, again and again......thank you'
I wish I could just say what I think sometimes, but hey! we never do, do we? I try to be as honest as I can with people (honesty is the best policy) but even I have limits. I believe that you shouldn't be brutely honest as it will cause people upset and hurt, when there isn't any need to.
Okay rant over, its out of my system now.

What a week......again!

Monday-Wednesday
Stayed at my sisters house, whilst heating was being done. Luckily we had Louise to look after us. Bit hectic, with 3 little ones under 4yrs. Not a lot of sleep, as they all had coughs and Jamie loves to start his day early. So we all felt quite tired by thursday.

Thursday
Heating all finished. Quick day and night at home, un-packed and then packed again for the weekend.

Friday-Sunday
Away for early xmas with Lee's dad and other extended family at a rented cottage in Lyne Regis.
Friday was the fuck face from hell for me. Had a massive seizure Friday morning and it wasn't one of the usual either. It had turned into one of my bad ones (as expected) but then I started to moan and do a gurggle/chokey sound in my throat (never happened before) it was fucking horrible and scary!! I wasn't 'with it' for a good 10mins afterwards, which has never happened before either. I normally have my seizure and when its over carry on as usual. My left hand went all weak and shaky afterwards and I dropped my tea all over the sofa! (my seizures only affect my right side with no after effects) I cried, as I was really upset, scared and fucked off.
I just wanted to crawl in a dark hole and dissappear. But I had to go away for this family doo and put a 'brave face' on it all.
Lee was fantastic though. He gave me extra love, reassurance and attention, just incase it happened again. It did, a couple of hours after we arrived at the cottage. I managed to dive into another room before I had my seizure, where there wasn't anyone. It was the same as the morning one, but not as bad. I cried and Lee loved me better. I felt like such a dick! everyone always say 'no your not, it's not your fault' but they would only understand what I ment, if it happened to them.
I felt a bit sad and upset all weekend, but I think I managed to hide it okay. Had another bad one on sunday (but that was back to the usual bad one) and had managed to dive in the toilet for that one. I don't normally dive into different rooms to have seizures! but I don't really want a group of people I don't know that well, to be staring at me and freakin out. I also don't want them to avoid me, just incase it happens again or because they don't know what to say. I find that if I have a seizure in front of people that I don't see very often or people that have never seen me have a seizure before, they feel the need to discuss it with me and ask questions. After it has finished, it's the last thing I want to do.

So I have started my week with a massive knock to my confidence. I don't wanna go out, just incase the mega bad one happens again. If I could stay in the house for the rest of the week then I would. My main worry is, having one at Jamie's school infront of all the other mums. None of them know about the alien in my head and I don't want them too. I don't want them to treat me any differently (to be nicer or to avoid me!) so I don't tell them anything.
Also people tend to look at you differently when they know. If you had/have a tumour you will know what I'm chatting about.
It does worry me that Jamie is safe, but I can tell him when one is coming and he knows what he needs to do till it passes.

Anyway thats how my week has started. I just wanna hide under the duvet, eat chocolate and hope that the alien falls out of my ear whilst I'm there. But as the saying goes 'life goes on' and I can't do what I want to do, so I just have to get on with it.
I've had a few minor little ones since my biggies, but I'm hopeful it was nothing serious.
Get the results from my scan next week... oh joy!!