Wednesday 24 March 2010

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.

Monday 22 March 2010

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.

Sunday 21 March 2010

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.

Thursday 18 March 2010

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

Sunday 14 March 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 :-)

Tuesday 9 March 2010

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.

Wednesday 3 March 2010

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.