*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
Thursday 4 November 2010
Wednesday 3 November 2010
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
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
Tuesday 2 November 2010
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!
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!
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