No new nasties

It is a pleasure to say that I've just got back from my annual review and I'm able to happily ignore the twinge I had and the always bugging feeling that maybe something has grown. So, nope I'm free, free, free.

eyes and eyes but no one is looking

just that I notice it and I notice it every day. Nothing will change I suppose.

ummm

contradiction

I watch 'Ugly Betty' I know but it is escapism. I have hiccups right now and have decided to watch ‘House’. This is my Friday night viewing when my baby is asleep and my love is out, i may be a bit lame but I’ve been upset by what I see. I want Dr House to fix my dad’s case and I have to remind myself that the only way the episodes work is that someone already did.

Dad isn’t fixed yet and then Betty, dear, all good, well meaning, horribly moral Betty is letting her family down. She is letting them down because she is prioritising her life above that of her parent. Now this rings true, I too could move back home, could support more, could ask my newly formed family to change, I could not live the life I have been truly enjoying to ‘be’ with my father but I don’t want to. And to comfort me I think, believe, know that my father doesn’t want me to give up on any of my life either.
Now I am a mum, now I see what she wants I find it very hard to say no. Of course I say no, of course I avoid giving in to the obvious bad habits (which includes TV which is hypocritical because of the addiction to TV I have myself) So in short... I’m not moving home, I’m planning to live this life and I will sacrifice much for my baby and I will love my dad, my mum, sister and all of them from here.
Am I wrong?

We love the NHS

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my eye tumour is ok,
my dad is ok
things are ok

More news

A ridiculous week. Firstly my daughter turned 2, a big event for me and her. My eye is going to be fine, yes it bled, no need to do anything. Phew. My dad was released from one hospital only to be taken into another later on that week. And my partner lost his job. I left one school after 7years and then sort of started at the next.
You?

I was right

So an afternoon in Moorefields Eye Hospital can confirm that my tumour on my optic nerve has been bleeding. I'm back home and feeling fine except for lack of sight in my right eye and oh, the broken toe. I mean really, I was defending myself from a surprise attack from a dying bee and kicked a wall, it bloody hurt.

So back to my eye.

I know nearly as much as you do.

But I'll worry another day. today, ouch my toe...

eye eye

I just left a message with Moorefields eye hospital asking for my man to contact me, because the last few days I've had a dark streak across my vision in the eye with the tumour on the optic nerve. I've been here before of course. remember the toe... nothing came of that and if I blogged about every twinge I had I'd have gone mad by now and pissed a lot of people off. But I had that feeling tonight, one of oh well, could be worse.
I started to plan for an operation. I'm thinking, well it is slow at work and i'd rather be fit and healthy for the summer when I can spend some time with my little girl. I think it all became more obvious when We went for a bike ride and I turned to check that no cars were coming and I had to turn a lot because I couldn't see.
This streak has been there for a few days, i had an eye infection and it got gunky for a while but it isn't now and there is this streak. Now I feel stupid, now i'm thinking I bet it is nothing and you're going to waste more time and more tax payers money. Oh shit... I wish I had a medical degree, I hate this because I didn't mention my arm to anyone for months and it turned out to be a real, 'got to get it out' tumour.
Better safe than sorry?
Arrrghhh.

who am I

My dad is still alive, and I'm glad of it because maybe he wants to be alive. But his desire to end it all has made me wonder who I am. I feel like maybe I'm an expert in getting on with it. I thought I was an expert in VHL and I am in my own way but. I don't know what I'm saying.
I'm glad to be alive, I live a very good life.
I have so much.

Working Hard

I have a new job, well the same job but in a different school and as a result I'm sitting here with very little to do. That's because I would normally be planning for next year but I can't yet.

I'm covering an English lesson.

They are bottom set I think.

I feel normal right now.

running running running

My sister plans to run the 2011 London Marathon in aid of VHL. I don't say it enough but she is amazing. Sometimes it is easier to notice the things that make you different from your family and by doing this you make yourself feel better or worse. She is amazing, and recently has been someone I lean on. I hope I do the same for her. I haven't felt very strong this weekend and have felt at times overwhelmed by the enormity of what dad tried to do. It seems to me that he must be in such a sad place, why else would he try. He must be watching us, his family, his friends and strangers all mourn him. He is alive but we mourn, grieving for who he was but like all grief for what we will miss. He was a brilliant man and we know that the cruelty of this disease has stolen parts of him, the most precious part being his will, his drive and ambition his willingness to live. I have taken for granted that the survival instinct we all have at one stage would carry him and me through any odds we faced and as a family we have faced so many. My fathers strength has always been quiet, he hasn't blustered his way through operations, refused to be too public about the struggles and I guess just like my sister he is ultimately intensely private.
I wonder when he will try again, not if. I sit at work thinking of him and how he might try, when he might try and I'm angry that because of the law here I can't say, 'ok dad, when shall we say goodbye. When shall I hold your hand and let you find out if you will see your son again. Say hi from me. If you get the chance let me know you're safe but don't freak me out. Perhaps a butterfly when I least expect it or most need it.' But we can't and we wait and he falls into feeling more lonely and isolated because of it. I think he has lots to live for, lots of us to love and events to witness but he has to want to live and just being a visitor here, only being allowed to watch and not participate is, I guess, slowly killing him.
I miss my dad, my real dad seems to have gone and although I love the man here that may be a habit and not for real because I'm convinced my dad would have found a way to move on from the frustration of his current condition, would have accepted some help, aids and would be determined to pick up a guitar and play it. He would get so very angry at DIY jobs, so much so it would frighten me as a child. It was the frustration at being defeated by something so simple. He would look ready to burst. When he gets angry now it reminds me of that and the fight is in him, he will carry on but then he calms down and sees the futility of his effort and that I suppose those moments are when he wants to ultimately give in. And he did give in but if you believe in the dead having an impact, maybe just maybe Conrad said, not yet dad, not yet.

A strange week

I feel so sad and a bit worn out. I think I may have under played how bad my dad'sa health has become perhaps not. What I haven't said is that he doesn't want to be here anymore and so last Tuesday he tried to take his life. Here in England that is illegal and so when he refused to go into hospital (my mum found him) they had to threaten to section him. You have no doubt realised that he didn't manage it, he didn't take enough even though he thought he had taken more than enough.
So 4 days later I have left his side and come back to my home and I don't know if I will see him alive again. He wants us to get on with our lives despite knowing he hates his. So I told him I loved him and that I would see him again. I wouldn't say 'goodbye'
So where does that leave us?

A weekend home

I spent a weekend at home, we had a little Christmas because now I'm a mum I have to share her around. It was easier this time because sadly I'm getting used to seeing my dad that way. He seems so vulnerable and at the same time unwilling to give up now. He won't let us help him with some things. However he does at others. He phoned me, he was upstairs I was down. He didn't speak on the phone and this panicked me. When I got to him he wanted me to do up his shirt and tie his shoe laces. I did, of course and was pleased to. These moments fill me with joy and dread and remind me of just how important the love we have for each other has been and will be. I am so proud to be his daughter. But I've no idea how my sister and mum cope 24/7

My beautiful girl

She fills me with joy