Sunday, 5 September 2010


First day back at work and it's all gone rather smoothly might I add, not a single syn wanted or needed all day, plus I enjoyed all the lovely free food! I've had potatoes, baked beans, cheese, pasta, broccoli, cauliflower, courgettes, mushrooms & cups of tea. However, I'm in the mood to pick right now and after realising the time decided that it was just simply too late for an omelette, so I've opted for some quorn style chicken dippers and mayonnaise. They actually taste sooo nice that I'll just be happy with them. (plus right now the cat thinks I've actually got chicken, oh you foolish critter)

I really want to be slimmer just so I can actually comfortably shop for clothes and not head into town with the mindset of settling for second best in regards to what I really would like to buy and also be happy with what I've just purchased and comfortable.

I managed to resist the vending machine full of chocolate today, along with the invite to Costa for yummy hot chocolate. I didn't even feel the urge to make up an Optional Caramel Hot Chocolate simply because;

I didn't need it.

I feel abit open blogging about this but this is what's going on right now. I'm really trying to push work about being allowed to travel home and have time off this Christmas. I think it'll be really important, my little brother is currently 24, but you wouldn't think it to look at him. He acts like he's 15 but this is all down to no fault of his own. When he was 2 he was diagnosed with Neurofibromatosis type 1, I had the checks and so did my parents as it's a genetic disorder. It was found that it had passed from my dad through a passive gene defect onto my brother, who strangely has all the dominant genes (brown hair, olive skin, brown eyes) and there's me with my fair hair, green eyes and pale complexion.

Because of the Neurofibromatosis he suffers with extreme learning difficulties and extreme dyslexia, multiple Neurofibroma which are normally found within the lining of the nerves throughout the body; however, my brother's Neurofibroma are found to be within the actual nerve itself, lesions of the brain , cafe-au-lait spots (look abit like a birthmark but en mass).

He also suffers with non medication receptive epilipsy which developed when he was around the age of 9 from what I can recall (I was the first to wake up to him having a seizure when he was sharing my bedroom; Dad was decorating what was his bedroom at the time). He's on Tegretol Retard, Keppra, Co-codamol, diazepam and a multitude of others that have changed over time.

He has appointments every year with his Specialist's in Manchester, Birmingham, London and Shrewsbury. They check his motor skills, hand eye co-ordination, hearing, eyes, MRI & CAT scans of his brain and spine. About 10 years ago the hospital located what appeared to be a lesion on the upper left side of the Frontal Lobe in his brain, we were informed not to worry as this is common in those with Neurofibromatosis type 1 (as a general result of the development through puberty and Neurofibromas) This 'lesion' was said to be benine and they will monitor and action will be taken should it be found to cause symptoms or issues or expand.

Roll forward 10 years and multiple check ups and promises of different techniques and medication, the doctors informed my brother at his appointment in Manchester that there's not one 'lesion' on the brain but it's three tumours within the brain. They were looking at brain surgery for him but now there's apparently no question of that and they're actually looking at removing one side of his Frontal Lobe. There's no use me getting upset and worried over this as I've already done this all weekend, now is the time for me to get things in order and I really would like the boyfriend to meet my brother. We've been seeing each other for almost a year and a half now and they haven't met. He understands the behavioural issues with my brother but I have this niggling feeling that they're all down to the tumours, the hospital now believe that the epilepsy may also be caused by the pressure created by these tumours.

I'm just worried that his motor skills with go kerput or he'll suffer with some form of partial paralysis, a lack of memories and so forth.

Just abit of a brain 'splosion there but it's good to get it off the chest so to speak!


  1. Sorry to hear about your brother sweety, let's hope he gets seen by people that know what they're talking about - nothing worse than being thrown around the NHS being told different things by different people, especially when it's such a serious condition. Stay positive though love! Very important to keep strong when this sort of news is delivered for both your sakes x

  2. You're totally right! I had the main bawl over the weekend, this means I can face the group manager tomorrow without any bawling left. I shall endeavour to be chirpy! Thank you and much <3 x