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’. So my Friday night viewing when my baby is asleep and my love is out may be a bit lame but I’ve been upset by what i see. I want 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 and all of them from here.
Am I wrong?

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my eye tumour is ok,
my dad is ok
thiings 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 worry another day. today, ouch my toe...

eye eye

so 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 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 bbut 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 himalive 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

Kidney

It was that time of year again, I expected to wait a long time to be seen but I wasn't worried because I'd had a letter, nothing new. Thing was I did find out something new, kidney cysts. I emphasize cysts because importantly they are not tumours. And here is where the advances in medical science come into their own. The context of this is when I was at university i was told that an ultra-sound had shown problems with both my kidneys and that could mean both having to been removed, dialysis and if I was lucky a transplant. This week I asked tentatively, 'and if they did what would the treatment be.' The answer was in short, a tablet.
phew

my turn?

Tomorrow I have my annual MRI scan, it is usually a long one. I feel like this time I might not get away with the - i was getting used to - all fine, two little ones but nothing to worry about. I feel like that because recently I've experienced pins and needles in my right hand. Nothing major, could be something else but there all the same. It brought back the memories of my heavy hand. The one I knew was a brain tumour. It is doing it now in fact. My body, telling me it could be my turn again. I've been hospital/operation free for nearly 8 years. Actually that's not strictly true because I had a C-section to have my beautiful and VHL free daughter.
But then again i thought a tingly toe might have been more sinister than the grumpy toenail it turned out to be. Maybe this is a case of a tight watch or bra. Perhaps too much typing on these things. A nerve that's going through some changes and unless it really does need taking out, my fictional tumour, I won't know until my appointment in November. I wonder if I could call and ask. Should I?

Crosswords

My Dad is in again, it feels like he has been like this for so long but really it is only 18months and it is steadily getting worse. So much worse. We manage to do the crossword together and this is one of the few things that doesn't make me feel like i'm looking after him, although i do fill it in as his handwriting is very bad now too.
The frustration he must feel spills over sometimes but considering he really seems to be coping well. I don't think I am. I've been very tearful recently and I am getting cross with the medical profession. They offer hope but is it false hope, does this really help anyone?

caring

The last three weeks have been difficult. I’ve been to the various hospitals that plan to look after my dad and I’ve cared. I hope and pray it doesn’t happen to me and feel such a swell of relief that it can’t happen to Ayla through VHL, but I have. Putting a nappy on your dad and the n going home to pt one on your baby girl pushes irony to its limit. I fed him his soup, I have washed him I have helped him clean his teeth. I have listened to him try and articulate his thoughts and feelings. My father is a wonderful man and he should have been loving this time of his life. He should have been able to relish his retirement. He gave all he could to his job and I never in all those years felt neglected or that his work came before us, ever. I was a very lucky girl because both my parents worked but I was always of the opinion that we, their children, were the most important people in the world. We still are. I really hope Ayla feels the same when she is 30 and 15 for that matter.
When are you allowed to let old age take the blame for what happens to you? VHL is getting all the blame so far. Well he deserves it.

It ends here

I remember when i was a teenager and first embarking on a serious sexual relationship when I realised (or was reminded by my parents) that getting pregnant was a bad idea, not least because I was a teenager but also because of the 50/50 odds of VHL. ‘It ends here’ I thought. My brother, the other member of the family who had it was dead and my dad,well as you know, he had had a vasectomy as soon as they knew it was genetic. I really felt that I was the only one left, the only person with this horrendous and murderous disease. And that was a decision I made. No babies with anyone, until I met Asher and I really wanted a baby.
And now I have one.
Since the moment she was conceived I felt guilty, my own desire and pleasure of a child and I was certain I had given her this disease. I knew, deep down that she had it, told myself she had it, was waiting to hear it officially but knew. You know? And there we were, dashing from Euston Square to Great Ormond Street all to hear what I knew and what Asher knew and then the Dr said. ‘I have some good news for you.’ And my gut and my instinct and my Catholic guilt evaded me, left me, out up their strong arms and gave in.

She doesn’t have it, she is free.

It ends here.








Unless I get pregnant again of course and then we play fates game all over again.




PS
once when i was in Rome i walked through a gateway that I seem to remember a nun saying that if you went through in a state of grace you got what you prayed for. I was selfish with my prayer but thank God I was.

So ugly

It has been a while and VHL has grown so ugly. My father has been in and out of hospital and each time it is worse and more horrid. No one seems to know anymore he's drifting backwards. It is strange to watch my daughter now 10months growing in confidence and ability, learning to feed herself, pick up the tiniest objects and soon she looks like she'll walk unaided. And my father, my dad is loosing all of these natural gifts. He can't hold a pen, phone, comb, toothbrush... you get the idea. And as my little one continues to babble on and experiment with sound he becomes slower and harder to understand and the cruel cruel truth that his brain, the thinking him part is still as able as it ever was. I know he was terrified of getting Alzheimer’s as his dad did before him but this is so much worse. I hate it. And the guilt and the worry, will that be me in 20 years will that be Ayla. We find out the test results soon, we’ll know the 50/50, we’ll know the horrible or wonderful truth. And yet more guilt, that I can’t stand going in to see him. Once I’m there I’m so pleased but the effort the drain the walk the tube the everything. But I love him so much and it is the very least I can do.

my baby girl

i know it is sideways, you'll have to turn your head. She is on her granny's lap.

radio silence

It has been a while and this is partly due to me now being the proud mum of Ayla. As far as VHL is concerned i have been given the all clear for another year my tumours are the same as they were before. The VHL hits hardest where my dad is concerned, he has decided to retire through ill health and this disapoints me. I'm sad that he isn't going to carry on but i do understand why. He seems more angry than ever before, his gentle nature is being destroyed by the disabilities he is now facing. I could go on but my baby is about to eat a big bit of paper!

new mum

I'm finding it hard to find time to do this. My mind isn't on VHL very much. Dad goes back into hospital next week for further tests. I guess that's why I'm on here again. And i hope I've managed to upload a picture of my little girl.

She's here

She has arrived. Last Wednesday 18th July at 2:45 pm our time. 7lb 4oz and she is wonderful I'm so happy.

We have called her Ayla.

Pictures to follow.

I HATE IT

I hate it, I hate it I hate it. It creeps in and nibbles away at the perfectly good life you live. Why the rant well VHL does it’s bloody trick again.
I had an appointment with my prof and all was well. All of us in good spirits and off we went happy as the day was long. Then at about 8pm I suddenly experienced a strange change in my sight, a swirling kaleidoscope circle in my left field of vision. I carried on hovering, naturally but when I’d finished I went into the kitchen to my partner who was finishing making dinner and I told him. Nothing to say; perhaps a lead into a migraine. But I’ve never had one it just sounded like it might be. As I was eating my left hand filled with pins and needles. I sat up as instructed by my partner who said I may be leaning on something. My nose started to tingle too; like it does when I’ve had injections to numb it. It was now about 9pm and I was worried. I went up to the toilet and when I came back down the left side of my tongue was also tingling. We decided to go to A&E.
Now if it was just me I probably would have sat it out and stayed at home and seen what I felt like in the morning but it isn’t just me anymore. 37 weeks of a daughter is inside and we felt we should see a doctor. If I was ‘normal’ then I may well have gone to A&E because of the combination of symptoms and I’m not normal. And as all the symptoms faded I felt like such a fraud. Even as I was taken very seriously and the baby was fine and the trace of her heart showed her to be completely unaffected and as they asked it I would agree to staying in over night and as I said no and as I said I’ll phone my prof in the morning and as the Doctor there did the neurological tests and said that it did sound like the symptoms of a stroke; which she said in such a blasé fashion I wondered if people had them all the time and even as my partners normally ever so calm face remained slightly sullen I did, I felt like I was a fraud and was wasting everyone’s time. So now I’m sitting on my third day of maternity leave full of anxiety and typing away here to off load. Pissed off that the VHL monster has managed to take my calm and take my security. Again.