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?

Being the one who does so many things for him is very hard. He's my father and he is too young to be treated like a child.

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 my child 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 my child 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 it 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 my partner 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 my partner 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, put 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 my daughter. 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. 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 disappoints 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.
I'm very proud.
I'm very tired. 

She's here

She has arrived. Last week a perfect day in July at 2:45 pm our time.
7lb 4oz and she is wonderful I'm so happy.

I had an interesting stay in hospital.

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 hoovering, 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 if 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.

Vulnerable

He looked so vulnerable. He was at my gate, stick in had with a list to the right; his hat on his head and mum dashing around in the background sorting the dogs and the car out. He smiled and wobbled on in. Later that day I gave them both a lift to the tube as dad had his first check up since the op. The surgeon is very pleased with him. As we pulled up in a line of traffic I said they would be better off getting out there (nowhere to park) so mum got out. Dad tried, he tried to do the window, get his bag and stick out and open the door. All foiled by the seatbelt left around him still connected to the car. ‘Don’t worry about the window dad just get out’ I felt bad. He almost fell out of the car and a kind man steadied him as he tumbled towards the pavement. Mum looked flustered and cross; a common face these days. He seemed so disabled and I couldn’t stand it.
Since then I’ve seen many people who use sticks and wheelchairs and it seems to me that the problem with my dad is that he refuses to accept he has limitations so he’s not able to deal with them. He still insists on speaking at 90miles an hour and so it’s very hard to understand him and he doesn’t use his stick properly. E.g. as he gained his balance to walk towards the tube I saw him lift it up to point at something!
And then there is the usual fear; will that be me. Will it be her?
But then they came back from then check up and there was all the positive things. The gamma knife will work on another tumour that is looking dodgy and the ones on his spine are doable too. But the best news is they are waiting for a new, faby daby doesy thing that is coming to Britain soon that is better than a gamma knife that will get em. Not the most technical way of describing it but I wasn’t there and so I didn’t get to make my notes. But it sounds good doesn’t it?
I’m on maternity leave now. Two weeks on Wednesday for the c-section.
I will do pictures. Take care everyone

Mum to be

The best thing about having this blog is making contact with other people, well ‘Steven’s Journey’ really. But it makes me feel less isolated. In about 6 weeks my baby is going to actually make her presence know and I’ll see her. So today when I read the other blog I visit most often I thought about a day when I may have to have a conversation with an 18 year old. It may not happen; well at least she might not have VHL and I pray she doesn’t but we may talk about me or granddad. My niece and my dad sat on my sofa and he explained what the operation was for. She took in her nine year old stride. So will my little one.

It's all hospitals

It was a hectic week but dad is home now. Although he seems a little depressed; I think he expected to be better than he is by now. His balance seems to be better than before the operation but is speech is effected more now. If he slows down he's much easier to understand and face to face I get almost everything he is saying. It's a different story when it come to over the phone though. But things are getting better everyday and I'm so relieved; a bit emotional as a result.

I've had an MRI to make sure my lumbar region of the spine is tumour free so that I can meet with the anaesthetist for my C section and hopefully be awake and not have to have a general anaesthetic. As a friend of mine put it yesterday, it's all about hospitals and tests at the moment.

Not long to go now

In and Out

Well not quite out yet but my dad has been in hospital and the tumour is out; all of it. He is sitting up this morning, has had breakfast and can speak, move fingers and toes and seems to be well on the road to recovery.
The road to recovery
we don't hurt until they fix us

More thoughts

It can bring you closer. My sister and I have had an interesting relationship; we love each other but recently we have become closer. It was a change in her I think. She realised that she had been holding me at arms length; too afraid to love me completely because somewhere inside it would mean that she wouldn’t hurt so much if I died like our brother. But that was hurting her and with some honesty and perhaps me being a bit more grown up we have become who we are now. Sisters.

Today we talked about VHL. She realised that as her husband who was asking lots of questions about the disease, asked away she felt that she didn’t know anything. She felt like she had heard so much but taken in nothing. Perhaps, but as I said I’ve had to repeat my information so many times I suspect it’s just there.

Dad Update - email to people

Hello everyone.

Not the best news but the expected news nonetheless. Dad met with Mr S and Prof C on Friday and the results of the scan show that he does need to have surgery. The tumour in question has grown quickly and is what is causing the balance and speech problems. It was 10mm a year ago and now it is 2.7cm; it’s solid and it needs to come out. There was talk about waiting till after the baby is born but after a family conflab it was agreed that the little bugger should come out as soon as possible which is what Prof C says is the best course of action. Dad is going to contact them tomorrow to tell them this and I suspect that dad will be admitted quite soon.

Obviously there are risks with the surgery and they all sound horrendous but there is the chance that he’ll be fixed and as good as new. So once more, please put your positive thoughts; prayers; ask the universe… what ever it is you do... (probably best to avoid any pacts with the devil) to ask that all’s well that ends well.

Love to you all

Hatfield-McCoy Feud caused by Von Hippel-Lindau - my arse

There has been coverage of this story for a few days now. I'm really surprised by the number pf people who are interested in the story. I don't know why but it annoyed me. I think because I don't want this disease labelled a 'rage disease' I mean, really!

So I’ve commented on a few blogs about it. I saw on one that the VHL alliance have done there bit too see this

Good Old Joyce said “VHL does not cause rage, or even hormonal issues. It may lead to one of six different kinds of tumours, only one of which causes hormonal issues. A "pheo", a tumour of the adrenal gland, can cause surges of adrenaline, that fight-or-flight response that when you need it is great. It gives you extra speed and strength in an emergency. But injected into your body at random intervals, it can feel like a panic attack or palpitations. Very rarely is it interpreted as rage.

Might it have been a factor in the feud? Possibly. But don't forget that the Hatfields do not get pheos and they participated just as wholeheartedly in the feuding. There's a very strong component of culture and environment operating here in addition to the undiagnosed medical issue.

Having a medical problem is NOT an excuse for bad behavior. Everyone occasionally has bad days, or feelings of rage. Fortunately, few of us act on them. We are all still responsible for our actions.

Best wishes,
Joyce Graff
Executive Director
VHL Family Alliance
800-767-4845 or www.vhl.org

Bit maybe all publicity is a good thing.

Genetic testing

You know, it is an odd phenomenon. I was thinking about the implication. We said no to the idea of screening for VHL on our little girl and if you’ve read my whole blog you’ll know we made that decision long long before this little one came into being. But what does it mean in a wider context? It has implications for everyone. So many diseases and syndromes have genetic implications; could it get to a time when if you refuse to have a general genetic text then your children could be refused health care? Could it be the case that if you make the choice to go au natural then your child would be disadvantaged by your stance. And then I wonder to myself. If someone offered to engineer this little person growing inside me a way of ensuring she were VHL free would I take it? If they could of it to me would I? Ummm yes. I think so. I’m not 100% sure. Just something on my mind. Seems lots of people are thinking about it.

The Real VHL

For my partner this is the first real journey into the reality of VHL. We have been together 6 years and he has heard the word tumour so may times and he knows I have them, he knows my dad has them but so far no need for treatment. And so here we are slap back bang in the bit that makes it as bad as it is. It’s been a long time. Long in my sense of it. And I found myself thinking, ‘thank god I got pregnant before he found out the truth.’ So yesterday I felt guilty and today grateful. He would have probably run off and got a vasectomy if he knew. It’s a rough time ahead. I’m wondering if having been through it a few times now if it will be any easier. I may be being a bit premature, as we don’t know if they are going to operate yet. I don’t feel quite so sad today but I do feel anxious. I’ve started tidying, my coping mechanism. When I can’t control the health of my family I start controlling the environment around me.

I have a haunting memory of saying goodbye to my dad the last time he has a brain operation. He walked down to the exit of the hospital with us and I held him tight. The ‘I love yous’ flowed but the tears didn’t; we had hope in our hearts and minds and at the same time I felt deeply fearful. I felt full of sadness and I was a very scared little girl. I was about 13. I didn’t know if I would see this version of my father ever again. I did, as you know. My family have said goodbye to me; three times. My partner doesn’t know that feeling; but he will.

In a bizarre way I suspect this will help his understanding of my family and my ways. It could be a very important development and make him a better father to our little girl. He doesn’t need it to be an amazing father but maybe, just maybe this needs to happen. My eldest niece will find this very hard; she is nine. She is a drama queen and she’ll find it very hard to reconcile her real emotions and her nature to blow them out of proportion. I know this because that’s me too. I’ve had to learn to not be hard on myself when I indulged the fear and grief that comes with it but more importantly I’ve learnt how to lift myself up and get on. She is learning these lessons at a very young age. She already understands grief because of her parents splitting up but this is a different flavour of it.

So my partner and my niece will be doing this for the first time together.

Email to people

Prayers and positive thoughts needed.

Hey hey

Some not so good news today. Dad has got a letter, it looks like it is a brain tumour in his cerebellum that is causing the balance problems. We thought as much. But that’s where you lot some in; go on get praying and thinking etc. We don’t know the plan of action yet; he’ll get an appointment soon and I’ll of course keep you posted.

My sister is on holiday at the moment and so she doesn’t know. So those of you who might have a slight chance of letting slip before dad gets to tell her shhhhhhhhhh. Very unlikely for most of you.

Sorry to say it via the wwb but you know me!

Take care ya’ll

Today I feel sad

My dad said ‘hello sweetheart, where are you?’

‘You’ve got some results haven’t you?’

‘Yes, are you with anyone?’

‘Yes.’

‘Right.’ He said in his matter a fact voice that I have come to know so well in these situations. I always know when it isn’t going to be great news, he always approaches it in this way. I love him so much.

The letter said that the tumour in his cerebellum has grown and is the most likely cause of the balance problem. He is to go and see the Neurologist on a Friday. It said A Friday, not a specific one. Odd. I cried quietly while he pretended to be fine about it all and mentioned that f they could solve the problem then he should be able to ride a bike again. We pretended to each other that we where fine and positive about it. We talked about mum and the fact that she has only just done a solid poo since she came back from Egypt. We laughed and we said we loved each other and I put the phone down and sobbed. I had a little bit of hope in me that it was going to be a medication problem. 

He can’t die before his granddaughter arrives and he must be able to hold her and hold me too.

I phoned him and mum this morning, they had been worrying all the night before and had somehow convinced themselves that the tumour the letter was referring to was the one on his brain stem. I hope I managed to convince them it isn’t; it’s one that was already in the cerebellum. They are different places in the brain; it would have made it clear that it was on the stem I’m sure. 

If it is that one then, well he’s fucked! Excuse my language but there it is. I feel sad and as I sat on the toilet and my baby girl kicked in my womb I said ‘sorry’ out loud. Sorry I’ve done this to her. Yes she wasn’t planned but who am I kidding we weren’t careful. I wanted to be a parent so much that I’ve been selfish. Please god don’t let her have it, please god don’t let her have to feel this pain. But she will won’t she. No matter what. I’m probably going to be phoning her and saying… ‘are you with anyone? Now sit down…’ And it won’t be one day it will more than likely be a few times.

How does he do it? He mustn’t die yet, he mustn’t be harmed again, he mustn’t be a memory I have to tell. We already have to do that with my brother for my nieces. Then I think of friends my age who don’t have one of their parents… for 28year of age I’m lucky and not so lucky. It could happen but I hope and pray it isn’t yet.

Today I feel sad.