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.
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Hi Jane,
ReplyDeleteI'm sorry your news was not more positive. I had my scan results earlier this month and unfortunately there has been some changes since my last scan six months ago, the tumour has grown (not changed grade or behaviour) and they are classing this as "very subtle change", I am still on the six month scan watch and wait plan. I have to say I was shocked as I have not felt that different from before but hey it is a tumour and that is what tumours do isn't it - GROW, whether quickly or slowly - so, mine is doing what it says on the tin, growing slowly. I guess I was shocked because I have always had "no change" before so it makes it all feel very real now. I am in the process of applying for my driving licence as my year is nearly up, thankfully I haven't had any seizures but I will wait and see, if I don't get my licence I will be gutted. I can totally relate to what you are saying about independence etc etc, the first year after diagnosis and not being able to drive I was totally depressed and hated relying on other people to ferry me around as I am Sooooooo independent, my kids do not go to our local school and there is no bus so we would need to change our circumstances drastically if I don't get my licence renewed, anyway will cross that bridge if and when we come to it. I am now dreading my next scan in September as I now know things are on the move which I wasn't expecting quite so soon I guess. In the meantime I am going to enjoy the sunshine and hopefully a BBQ summer with the kids! We are getting a puppy next month so will bring new life and focus into the house, so really looking forward to that - take good care of yourself and keep us posted Julia X
I totally understand how devestating this must be for you. As I drive for a living it makes me understand even more how hard it must be in that respect. As you say you just have to cope, hard as it is that is the stark truth of life... you just have to cope. What a harsh and very often unfair world !!!!!!!!!! THAT'S LIFE !!!!!!!!!
ReplyDeleteThe good side is that you are a very positive and optomistic (although that has probably been tested to the limit lately !!!) person so you will cope !!!!!!!!! That's why I love you cous (sorry haven't said it for ages and that one just slipped out !!!!) x
Hi Julia,
ReplyDeleteSorry to hear your scan results were a bit shitty this time round. Do you know how big your tumour is? and what meds are you on? Thanks for the reply to my post, I know I can be a moody fucker sometimes!!
At least they haven't brought your next scan date forward, which is a positive sign! I know what you mean about dreading the next one after a change tho, as you expect it to be a bad one. My next scan is in August.
What sort of things have people been saying to you when you tell them about the change??
Thats all we can do chick, is get on with life and try not to let the bottom lip get the best of us eh!?
Hi Jane,
ReplyDeleteThanks for your message. My tumour is 32x52x44mm after my scan, before it was a few millimetres smaller - I asked her at my last appointment as I am a visual person and need to draw it or look at a ruler to visualise how big this thing is - it has grown a few millimetres which she wasn't worried about. How big is yours? I asked her if mine was average size etc she said it was below average to avearage size. She also assured me that she had her most trusted radiologist look at my scan as well as the usual one, which I guess she does if there is any change to be on the safe side. As you say, at least I can forget about this until the end of September and early October to see the consultant. I think until they say right we need to take action, I am trying not to think about it as it would take over my life! I keep myself really busy and am lucky as I have been able to carry on as normal, I still drink wine (on a daily basis!), go out with my mates, go on holiday and drive and I appreciate this so much as I know there are many others who cannot do some or all of these things. Thankfully, I am abit of a "get on with it" kind of person so I don't let this get me down! People haven't really said anything about the change, they know it is going to happen sometime but I guess until I need treatment or more regular scans etc.etc. they feel everything is ok for the moment. I am taking 600mg Epilim twice a day, the first drug I had for the first 2 weeks was Carbamezapine but I had an awful allergic reaction so they switched me to Epilim, and thankfully no further seizures. I have put on weight from it but I am not bothered as long as they work. I think the tumour has quite abit of space for growth going on what the Surgeon said when I was first diagnosed. We all have our off days, my concern is not for me but for those around me and how it's affecting them, John was shocked with my results but was reassured that I didn't have to have anything done immediately or any more frequent scans at this time! Anyway, hope you have a great holiday, looks like the sun is shining for you! Speak soon, Julia.
Well mine is a LARGE Diffuse Astrosytoma. Because it is diffuse it has no defined edges! which makes it hard to measure. They told me it is the size of a small plum.
ReplyDeleteThe reason I asked you was because I was thinking that surely the size at diagnosis has an effect on the expectancy of your life!? what do you think??
Before all this shit happened I was a very much 'get on with it' type of person. But It seems that even though we have the same type of tumour it is affecting our lives in very different ways! and it is very hard for me to be like that now. But I am still 'getting on with it' in my own way.