Counting blessings again

I'm crying, I feel very low and I have some minor silly things that are of little consequence running over and over in my mind. I can't shake it.;
My hormones are rather fucked I think, I'm tired and I feel lonely.
I was dreading a night out last night, with work friends because I didn't know what to expect, how I would feel and it was good in the end. And most of today I felt ok too but it's hard not being well.
My dad never complains, never, well not in my earshot. He doesn't moan and apparently neither do I. A few people have pointed this out to me recently, I do!
I've made steps, I've driven, been into work twice, travelled on a bus and had a drink of the alcoholic variety. Progress right? So suddenly I feel like shit and I went and sat in a dark room and cried and then found someone to hug and thought of the things I should be grateful for.
My daughter
My amazing friends
Having a family
My home
A secure job - even if I don't feel welcome - and why is that well I think my boss might be very good at drawing out my anxiety. You just don't always need to tell someone they are disliked, or not doing something 100% perfectly, because I'll admit it I'm playing at being ok, that awful phrase, fake it until you make it. I'm vulnerable and I'm trying to get back.
The CBT didn't work, there was nothing there I hadn't already thought of or tried but, as we now know, my brain wasn't right and I don't think my hormones were ok, I've certainly slept better since the tumour and cyst were removed.
I'm not officially back at work, right now, very unusually for me I never want to go back.Right now I want to curl up and stay away from almost everything and I know there are only a few things that have a chance of making me feel better, this is one of them, have a good cry and count my blessings

I'm not poor - in fact we are in a good financial position -
I don't live in a war zone or under a dictatorship
I don't feel like I did in November - but I'm terrified of something similar happening again.
I'm loved and valued by others
I'm not bad looking and I don't look all of my years, considering how physically and emotionally hard those have been that's good. I need to put on weight.

One of the toasts last night, said just the once but meant a lot to me was along the lines of, to me not being dead. And I'm not dead, possibly a little brain damaged, maybe permanently but not enough to stop me, not completely. A very good friend came to see me the other day and we talked, she let me talk lots and lots but it was so helpful to hear her tell me that getting on with my life was normal, right and ok. This is hard and right now, no matter how much I try I don't feel like I am coping. I'm not. Perhaps it's not even VHL, perhaps it's other things, things I also have no control over.

That bucket list might need a review - I need something to aim for and not just getting back to normal.

Perhaps what has brought all this on is the volume of TV I've been watching, the banality of human life and the averageness of life, I get excitement but does it have to be related to medical crisis and general - you can't have that.

Where am I now?

The recovery feels slow, still.

I thought I had a lot to say today but now I've started to write I've lost the inspiration.
maybe later.

A lot of time on my hands

I am looking forward to going back to work, 4 weeks since surgery and feels time to go back, I need to take my time as I know I want to rush back. I shouldn't.
I'm well enough to be quite bored  until days like today and then it hurts.

But in more interesting news, it has occurred that while I'm satisfied with my lot, even content, happy and have a plan, my husband might not be and perhaps I need to consider that.

I don't want him to look back and regret his life, he doesn't seem happy to me, and it seems he wants to travel.
So we need to consider it.
I don't want to really, but it's not like it would ruin my life.

I'm not sure what we'll do, will the little one do it, want to do it?

I need to not be selfish, it will be a while to organise it. A bit of me thinks, maybe we might not all go!

Stiff neck

I look back a week and I know I must be getting better,
goals reached

• toilet on my own
• dressed myself
• bath
• got out of hospital
• climbed the stairs
• ate food at a table
• proper shower
• emptied dishwasher 
• walked my daughter to school
• cooked
• dropped fentinayl (don't know how to spell it)
• put Christmas tree up 

next steps - 

• shops
• drive car
• walk to school
• hair cut
• tidy house
• get off the drugs!

then - get back to work, begin to feel like I'm really me. 

counting your blessings

I'm alive, a good place to start. I'm able to take and pick up my daughter from school. My work are being really supportive and I don't feel pressure to return too soon.
I am getting better, slowly...
My friends have proved to be wonderful, caring and positive and just amazing, I feel loved and valued by them,the real friends are there when you need them, the people in my life are good people.
I know myself in a way I didn't before which is actually a mixed blessing because I know some things I want but can't have. That's hurting.

I should remember that recovery takes longer than you think it should
I still feel quite sick.
My body isn't mine.

I can't process it all yet, I don't know who to talk to. I don't know who'll listen well,  I am self indulgent at the best of times but I do need to talk this one through and I don't know who'll listen, well. Who the hell would want to? I feel changed and I don't know what the consequences of that are.

Who can I be honest with? Who can listen?

getting better

Today I feel largely frustrated that I'm not yet myself. I feel sick and my head still hurts and I'm wobbly and weak and my hair looks rubbish.
I have to be careful on days like today because I know they can lead me down a dark path. I am strong, I can overcome this all, I can get used to almost anything, I am strong.
But allow me to indulge myself, what if I'm not? What if  I won't ever be the person I was before, experiences do change you and this felt big, this has changed me. I don't feel like I'm ever going to get better, so much feels like my body doesn't belong to me and it doesn't know how to come back. I feel quite lost in my fear of not gaining back control.

headache
feeling sick
no appetite
wobbly
balance off
arm tingly (left)
eye feel odd
general weakness
shaking

and yet so much better than before the op, they where hellish days, each day more unbearable than the last, I couldn't even feel bored because the unpleasantness of it all so so extreme.
Count your blessings...

I'm trying to.

survivor?

It has been 3 weeks since my surgery and I feel rather disappointed that I don't feel better. I expect a lot of myself.

None of this has been nice, all of it something to get through but I have no choice. One thing is for sure I am living my life in a way I want to as lying there, for almost a month and I don't regret very much and the things I do regret weren't really things I actually had any control over.
I want to get back to that life, I don't want this one,

I should process this all but right now I am indulging myself in TV and friends visiting. I'm weak physically but proven to be strong mentally.

In hospital

Turns out that I felt rotten for VHL related issues as well as others. I'm typing on my phone from HDU as 3 days ago I had brain surgery. I'll no doubt say more on the topic anon.

A sad and hard day

One of our students died yesterday, she had ongoing health issues but none that should have caused her death.

Today was hard and exhausting, and my life experiences made me deal with it well enough, as well as anyone could expect.

I've got a pounding headache now and I think I'll get an early night.
I came home and saw my lovely little family cooking together, they were making lasagne and when I held them both close, they stood with me, holding me while I finally cried. I'd been holding it in all day, being there  for others, trying to make sure we were doing the right things as a school.

In amongst all this we had several other horrible situations, calls to the police and social services and student kicking off. They day went by so quickly, so sadly.

'Be the Verse' Philip Larkin

http://allpoetry.com/This-Be-The-Verse

This poem was introduced to me by my big brother. I thought him so important and clever even before he read this to me. My big brother was my hero for a time. I didn't see the many layers of relevance in this poem at the time but agreed with the sentiment and was, of course, simply impressed that an old man who was a librarian, could use the f word and have it published.

Not long ago I sent the link to a friend I was becoming very close to, I pointed out that as parents it is inevitable that we are going to fuck our little ones up, we should embrace it and just try to love them as much as we can, give them the resilience to cope with it, regardless.

The layers of this poem go into my genes of course, my dad fucked me up, his mum him, who knows if she was the first... and despite not passing the literal gene onto my daughter, she still has to live with the effects.

A couple of weeks ago her school began to worry about her and suggested a form of therapeutic play, we, my logical and non-worrying husband and I discussed it.We talked about the idea of making too much of it all. She been seeking out comfort, been crying, getting worried about my brain. Worried that my whole brain would get frozen, that I had wanted to spend a special day with her because I was going to die, because...
At home she seems very content and happy, she doesn't seem to worry. But her little life has been packed full of hospital visits, knowledge of test results, disability and just recently I think the fact that her best friends aunty died, showed her the pain of grief in a way she just can't articulate.

And she must sense my tension, my worry, my own fear because as much as I try to hide it from her, as much as I try to be 'normal' I'm not. and sometimes I'm not very good at that anyway.

So I've fucked her up already.

If you ever read this baby girl, know I love you and your parents fucking you up is inevitable and you'll do the same for your children one day (if you have them) and just as my mum is very proud of me despite my many faults, mistakes and fuck ups, I too will always be looking for the things I can feel proud of, the things I will love about you because while we have the potential to do so many ruinous things in our lives, actually when you are a normal parent, a good parent, that's what you do. Love unconditionally.

Am I strong?

"You're so strong"
"You're one of the strongest people I know"
"I don't know how you do it."
and less complimentary versions
"Heart of stone"
"Ice queen"
"psychopath"

And yet when I cry, when I look weak, they don't like it. By 'they' I mean those that think they are close to me but find the truth of it all very uncomfortable. I suspect I remind them of their own weakness and mortality. They like it when I cope, when I am strong because it eases their own fear.

I don't feel strong, I haven't felt physically strong for quite some time. I really don't like it. But emotionally I carry on. But I am not strong, I'm just good at looking like I am. Perhaps that's the same thing.

Still waiting

Ah, it burns.
So much waiting, this is also part of the curse of VHL. There are so many things that VHL takes from us and our families. It takes my body away from me, it takes my peace of mind, it takes my ability to plan, it takes little pieces of my relationships too. It took my brother completely and is stealing most of my father. And now? It's nearly taken me.

I wonder if anyone can ever really know what it feels like. The fear and the pain, the frustration and anguish. All words that don't sum it up, don't come close. I had some almost blissful years, where I didn't worry, well not much and not as much as now.

I don't know what to do for the best, I don't remember how it felt, except that it was different to how I feel now.

I've led an interesting life, always have a story to tell, to always have a trump card on most stories. I feared being boring and now I hold my tongue, sometimes. And now I do this, get it out of me here.

Applying for funding

It might be that they (the NHS) have to apply for funding for treatment every time but I know about this one. I know that I'm expensive.Taxes for me are such a small part of the gratitude I feel to being able to get the support and treatment I get. I've always felt privileged and blessed to have the NHS there for me. I don't know how long it can last.
I imagine this is a tiny part of what Americans feel or fear. Not knowing if you can afford the best cure, even the right scan. It's bad enough having to know you need 6 monthly scans and various other blood tests etc. When I get worried about an odd feeling, I, well, worry but I don't worry that when I ask my GP or my genetic nurse to get some advice, do a test and help and I don't expect that I'll have to find the cash.
What do I do this time, what do I do if they say," oops we;'ve really run out of money", or "Sorry the budget just won't stretch that far and there are other people who need it more."
And naturally I'm still waiting. Oh the waiting. Pals, friends all resisting the urge to ask, "do you have a date yet." and then they don't, I suspect because they worry I have got a date and I'm not telling them, or they missed the email or just because, unlike me, they haven't practice patience quite as often.
I'll probably send another email if I don't have a date by Wednesday.

Melt down Monday

Had a wobble today, the straw that broke the camels back? It was incompetent staff, a waste of my time and their intellect.
It shocked a couple of people - it left them unsure what to do - they could scoop me up and hold me and let me sob which is what I wanted, what I felt I needed, I sat alone and was watched.Their indecision? Well a myriad  of reasons. I sucked it up... that's what you do.

One of the watchers was a friend/co-worker  who perhaps hasn't seen it  before, as I've always managed to hide it better, said I was like one of those penny slot machines, loads goes in, and keeps going in and then all of a sudden that one penny sends a whole load of them crashing through the slot.

It made so much sense, even the fact that you don't even notice where the pennies land and the tray doesn't look full in places, you think, loads more will go and then  - oh but not there one more there and then it lands and nope, actually it's holding and the unexpected can bring it all down around you.

If I'd let myself today I think I could have cried for an hour but I was at work and I had to get on so I picked up all those pennies (minus a couple that escaped under the machine) and quickly shoved them back in the slot.

Later that day I said fuck a lot in my office, to a colleague that finds that quite funny, when people just wouldn't stop coming to my door even though I wasn't the person who they should have been bothering. A couple of pennies dropped.

I taught a good lesson, they, the students, made me laugh, one dropped

I called someone and we talked, one more

I cried on the way home, a couple more

I'm writing this - another one

Trouble is, as each one drops more seem to go in while I'm home or thinking about my enemy.

Hiccups

I've got hiccups.

I've been getting them a lot over the last few month, perhaps more. I get them at least 4 or 5 times a day, more today.
The interesting thing about hiccups is that there is a group of people who feel compelled to let you  know you have hiccups. Then there is a larger group who feel they need to tell you how to get rid of them.

As tempting as it is to say 'it's my brain tumour.' I tend not to, I tend to say yes. I never take their advice. Those people are convinced their way will work and that you have not thought of it yourself, I've never really seen why people feel this is a bodily function that we should try and stop.

Someone pointed out that it might be because we need a thing to say, like ooh pardon or bless you but we don't have a formal hiccups reaction.

I thought that was a good point.

zap away

We met with the man... dad and I and we have both signed the consent forms. The big yellow sheet that means you understand that you are letting them do something to you.

I'm currently having my first online CBT session. So far so like a blog!

You shouldn't look up side effects

In a bid to be prepared for my consultation I referred to the trusty internet and as always went to Cancer research and NHS as I feel I can rely on them. Not great stuff, but there are very few good side effects. (the tan is one!) But now I'm thinking maybe I should have buried my head in the sand.
A shunt, swelling, severe headaches and more besides. Traditional surgery anyway... Side effects that could happen straight away, months or years later. All seem bloody horrible.
Loss of function, not being as focused as you were, concentration etc etc
Will I be allowed to drive... with that list I know I bloody wouldn't say I could.
This disease is such a pain in the arse.
Today I cried quite a lot. I  called my mum and despite her calm and sensible advice and warmth I know I worried her senseless.
'It's so hard mummy.' and 'I give up.' fell out of my tired mouth. I really did feel that way this morning. If I hadn't been invited to a party I might have had yet another sofa day.

I read a post on depression, so much of what the blogger talked of applied to so much of how I feel. I felt hopeless and lost this morning. This evening I'm looking up side effects so I know what to ask.

I understand why people talk about fighting cancer, it isn't like you can will your white blood cells to attack, it's much more about getting up and getting on with your life even when that is the last thing you want to do. The days are very hard. If I could switch my brain off for just a little while I might get some rest but even sleep doesn't offer me that comfort. My dreams are vivid and frighten me, I wake up crying, angry and afraid.

Perhaps that why when I feel there is a glimmer of happiness I run towards it, when there is a chance to feel numb I take it and when I need to I call my mum, sister or a friend. In spite of all of this I have them, I have that love.

Home alone

I'm at home on my own which is rare now that I have a little girl. She has gone on an adventure with her father and I'm staying put.

Not that I don't like adventure, it is just that I'm more of a worrier and I don't want to ride a bike that far to get wet and not have cups of tea.

He is an amazing dad, the best and he always will be. I hope and I need to know that because who knows how long I'm going to be here to be the mum. I'm hoping ages, I'm hoping medical technology keeps me alive and well but as yet there isn't a cure and so I know there is a chance that I won't be physically able to be one type of mum and in my darkest moments I wonder if that sell by date might just come true.

I've bee getting pins and needles again this last couple of weeks and at 11.4mm I think that brain tumour of mine is doing a bit more than giving me hiccups. I'll keep a note.

A medium mood day.

A down day

Letters arrive for those of us with VHL on a regular basis. Appointments, follow ups scans. In these days of electronic communication it is a surprise to have so many piece of paper. Today three came with NHS written on the envelope and I hoped at least one of them would say when I was going to see the consultant and at last I'd feel we were moving forward. But no they were not and so I'm still waiting, waiting, waiting and I don't even have the distraction of work.
I've been trying to fill up the next few weekends to help with the passing of time.
And the disappointment of these letters today have taken their toll on my mood. Luckily for my little girl she has friends over and they are being silly and laughing and she hasn't noticed I'm grumpy. Oh and I am so very grumpy.
I tried calling other people but I couldn't shift my mood. I thought this might either force me into a good cry or cheer me.
Nope, neither yet.
Ah well, I'll grump on and feel sorry for myself for a bit longer.

Counselling

I've asked for some.
At first I thought it was a sign of weakness, despite giving others the advice to get some but it has been along time now that I don't feel I am able to cope all the time.
When you ask, who am I? Not in a philosophical  way but in a, I don't recognise who I am sometimes and I don't know if I like myself, then it's time to admit that with the best family and friends in the world, maybe you need a bit of extra support.
I don't feel like that often and I've had a few days of late where I feel quite positive, right now in fact I feel happy and well.
Well... as happy and as well as I am capable of with all the waiting.
I'm not sleeping and I haven't done for a long time.

I can go to sleep now, for a while, when I had the cancer I used to stay up late (for me) watch TV and have a couple drinks so that I would sleep.  A friend gave me some lavender spray to try instead. She was worried, as was I. I stopped using TV and drink to lull me to sleep.
I still wake up, wide awake at 3 or 4 or 5 sometimes all 3. Wide awake with a head full of everything and nothing. I've tried various suggestions, counting back from 500, naming things with each letter of the alphabet, remembering mundane lists of facts, doing my timetables (mine you note) and running happy memories over and over.
They help to distract me but sometimes the various emotions just hang on and I toss and turn, get irritated with my husband for breathing, snoring, moving and being asleep.

Sometimes I go and sleep in the spare room. I refuse to get up before 5:30 as that would be giving in.


I went to my GP and made it clear, I don't want to be on anti depressants and I don't want sleeping pills. I want to have a private space to vent and cry and say some of the things I can't even say on here. Can't even write in my diary and it isn't all VHL. It's other stuff because my life isn't all VHL. Despite feeling like it right now.

I am capable of being a very happy person. I'm known for it... I am just full of self doubt and at times loathing and I want to make sure that full feeling gets a bit more balanced,

Yesterday a colleague and potential friend came over and she has had that kind of support and said it was the best thing she ever did.

I've had it before, not long after my brother died. I learnt that I was desperate for a boyfriend! My counsellor cried, I didn't. I just told her my life story, it was already longish.

I've since learnt that VHL has given me a sense of never wanting to need anyone. Do you thnk that is ok? I've said it often enough, I can get over anything. (I've changed my mind on that, if anything happened to my little girl I'm not sure I would be able to)
Do I get over it or just push it down with all the other repressed emotions?

Who knows. I suspect that's what I'll see if I can find out and well, if it all starts to flood out then I might be happy with me again.

I currently feel like a fraud.

Complex aren't we, humans.

My mother

My mother has started a blog, she was going to write a book but I encouraged her to do a blog, faster and more accessible.

So if you want a different perspective on my life then take a look.
gotchapd.blogspot.co.uk

She'd love you to have a look, I get my attention seeking tendencies from her. I don't really share my one with my family because it isn't for them and I don't mind the idea that no one reads it. I keep a diary for my really private thoughts, just goes to show you how much I trust my husband, he would never look.
He really is the most trust worthy person I have ever met. That's a different post I think.

My mother. I don't know how she does it and I've told her that often enough. How can you loose a child and carry on, for us I suppose, for the two of us left behind. Her life just hasn't been what she ever wanted. She wanted to see the world, be a free spirit and she got this life. I wonder how happy she has been, so must misery and worry and pain.
When I think of her I worry about her. I worry that she is trapped by VHL and will never escape, she may even be more trapped than me.

Tragedy is my shadow

Today was GCSE results day.
And strangely was also the funeral of an ex-student, there on site, in my new school.
It's a tragedy, a girl of 21. I know nothing about her but I know she loved school, well at least her parents must have felt so. I didn't stay.
You see I'm not good with coffins, who is? But since I sat and lived through my brothers funeral I'm a mess. I find it hard seeing them no matter what and I cry, all the feelings from that day come flooding back, they fill me and the water spills over. I fill with fear and as usual I fill with the dread of not just my own mortality but that of all the people I love. But I fill with another fear now I have a daughter. I fear leaving her.
At my brothers funeral I promised myself I would live my life to the full.
Have I done that?
This summer has been insane with the potential of tragedy, and so far not us. When my brave, strong, capable mother says
"I wanted to tell you both together..." and there we are she might have breast cancer oh and needs an MRI for a suspected brain aneurysm. I went numb, I said something stupid like "It will be fine" exactly what people who don't know say.
I honestly didn't feel anything, not a single emotion and I didn't begin feeling until I had to try and go to sleep. Then that feeling of fear began to creep in, selfish thoughts of how would I have home any more. Because the truth is that my mum is home. She's the part of me that I need to feel like I'm ok. She is the bit of my life that I've always been able to rely on and trust and love. She is my consistent and it is the last thing that I could cope with loosing her.
So it reminded me of how I need to be that for my little girl and that, of late, I don't know if I have been.
I told myself recently that in a few years she wouldn't need me any more so I felt that if I went she would be ok but I'm 37 and I really need my mum.
My friends sister too dying of cancer, only 32.

Telling your child you have a brain tumour

I'm posting a lot today as I've been saving these up.

We discussed telling our daughter of the latest news and I decided it best to make it a matter of fact kind of deal. So a week ago as we were in her bedroom I decided to tell her. We lay on her bed and I said something like "you know when you were at Grandma's last week and I went to the hospital well they told me I have another tumour they need to do something about."

As part of the conversation she asked if I was going to die. Now then, I've always been clear with her that we all die and I don't want her to ever think I lied about it, I said that wasn't the plan, that the Doctors had found this one and were going to do something about it.  I told her about when I had one removed before and reminded her that I had had the kidney tumour removed and I'm fine now.

I told her it wasn't a secret and she could talk to me, dad or anyone else about it but reminded her most people wouldn't really get it but if she wanted to talk about it she could.

We both cried a bit, I tried not to but it happened anyway.

She hasn't seemed bothered about it since, I think I handled it well.

Current list

Only if you are interested

1 cerebellum brain tumour - near brain stem
1 resected cerebellum brain tumour
3 spinal tumour
1 optic nerve tumour with full thickness macular hole
1 tail of pancreas
1 liver
1 left kidney cyst
2 right kidney resected through partial nephrectomy
2 adrenal gland tumours resected

what's that now then... 13 unlucky for some

Relentless

This disease is relentless, well it certainly feels it right now.

https://vimeo.com/118914870

As William Dafoe  makes clear, getting told over and over again. So much so I've forgotten what it feels like to not have something happen. What is good news?

The latest is a brain tumour, left cerebellum and near the brain stem. At the same clinic my father was told he needed treatment on two tumours.
My mum wants me to be angry, she is but I don't feel those things right now, I feel sad and scared; since having  my daughter each time the news is bad I get frightened I won't see her grow up or that she'll have to live with me as someone I don't want to be and that frightens me even more. My father isn't the man he used to be. It's taken him a long time to loose his body to VHL and he's been very stubborn about that and I don't mean he's fought it I mean he has taken a long time to accept the possible help that is out there to get used to the worse body VHL has inflicted on him,. That means that he hasn't been able to adjust in ways I think would have made him a happier person and has left our family with a very different man to the one we used to know.

That's something I'm determined I won't do, each time this disease steals part of me I'll find a way round it, I'll fight I guess. I'll do my best to be who I am, whoever that is! (Although you can't deny that my dad's body seems capable of withstanding every kind of operation  possible)

As always I've told people in my own positive way of the latest bad news and reached out to my friends and family who have gathered round me and made me feel loved and supported, telling me how strong I am and how I'll get through it. And when I really don't feel strong they hold me up, love me and I find that a comfort and a blessing and I know that no matter what I am a lucky person because they are there.

Kidney Cancer no more?

Post op check up today and good news, no more cancer, well not in the kidney. That's the issue with VHL isn't it. No matter how happy we can be that that bit is done and dusted we know that won't be the end.
VHL will continue and so must we. Time is something I struggle with, how much have I got.
I know, I know, we all have that, any one of us could be hit by a bus... you'd have to be blind but it could happen. You could have a fatal accident with a tea cosy.
But VHL isn't likely to kill me, despite scaring the shit out of me from time to time. No, it is much more likely to destroy plans, ruin events and delay what I want to do.

Not many people get it, not many people live with a distrust of their own body.

I do

Operation postponed

I was all ready, bloody nervous but ready. I'd organised everything at work. I'd got plans in place for home. I did a big shop for the people in the house who would need to eat and I'd packed my bag. (a few times)
I set my alarm and said goodbye to my little girl and father. Then we went on the train and found our way to the right ward. There we sat and I had bloods done, blood pressure, temperature. I spoke with a lovely anaesthetist and managed to sort out my concerns about being sick

I met with one of the surgeons and he very kindly went through all  the risks - I hate that bit but oddly I felt better, less at risk. I got it; he explained it well. He drew an arrow on me  -  the letter R in the right place.

I got into my gown and stockings and had the wrists band on.

Then my husband went to get those that could drink and eat a coffee and we joked that that would be when I was taken down. I kissed him goodbye just in case and off he went. Then 2 surgeons I recognised turned up and we went into the side room.
No HDU bed.

They wanted to talk options. We  could wait (nil by mouth) until the afternoon but everyone would be pissed off, tense. They were pissed off. And so we agreed that it just couldn't happen. The fog perhaps had caused too many staff to be absent, too many new patients, accidents and people who really needed surgery or they would die, they wouldn't last another night without the amazing NHS staff?

I got dressed. We went and got something to eat, I had a cup of tea.

Then I came home.

My prediction came true, I didn't die on the 11th December.

ready for a fight?

Ready for a fight?

The waiting is what nearly kills you,  never mind the cancer. And this time the cancer in my genes is sitting waiting to piss me off.
It is so different this time, having a daughter makes this process so very very different. Before I realise that all I worried about was me, what would happen to me, how would I feel. I don't think I really thought about my family. I was of course conscious of them but the focus was me. Now, each time I hear a new piece of information I think of her, I worry more about the impact on her. And each time I feel so blessed that it stopped with me, she, oh thank all you can thank, she isn't cursed by VHL.
And just to add to it that ominous knowledge that the pins and needles I am feeling more and more often might just be the next battle. The fight continues.

It's so hard to explain to others that this is an on going fight. Even other cancer victims don't really understand.

For a while I was convinced I was going to die, and soon and during the operation. The bleeding out, the cut that finishes me off. And I now need to trust, I need to believe and I need to get ready for a fight. My last day on this planet will not be 11th December. My last day is a long way from here.

My last day is not soon.

Limbo

The waiting, the horrible endless waiting. It's been a year since I found out that the little bugger is growing and all this time I've wanted it out.
And life has been a bit of a fug since. I don't know how I felt last time, last time I wasn't a mother and last time the risk was mine alone.
Now what do I do, how do I look after myself and be selfish like you need to be when I need to be strong for my baby girl?

This is the hardest, since the 'life expectancy letter' it has been so difficult. I carry on of course, I work and I play.

I've begun writing a diary to my daughter, in case.

Operation number 7

It feels very different this time. I have a 5 year old I need to think about and although it means I have no chance to show I'm worried at home I am more worried than I have ever been before.

I have been told it makes sense to prepare. I suppose all parents should but the advice was given with care and terrified me. I'll write her a diary and use it to give her memories I might not be around to express in person.

Having children makes you contemplate your own childhood and I had a great one until high school, where some bits were really shit. There were some bad memories from when I was younger but actually overall it was great and now I type that, high school had some fantastic bits too.

Making Memories

I went on a school trip. I had to leave my little girl behind to make it happen, well it would have happened without me but I wanted to be part of their memories. I made them be in a group picture; "you'll thank me when you're older" I said to the girls and boys who didn't want to be in a picture, didn't have the confidence to see themselves there.
Making memories is really important to me, having things to look back on and feel happy about, to feel proud of. Life is after all a collection of memories...

First sight of a cortisol crisis

A couple of weeks ago I saw, first hand what it looks like when my dad has a cortisol crisis. No blood or passing out but he suddenly, and I'm talking minutes, got very cold, blue lips and finger tips, shivering. As luck would have it we were already in the hospital for a test and so I went to get the Dr, the one that had seen him just half an hour before.

He had an infection, something that most people would simply overcome but for my dad it knocked all the cortisol out of his system. I sat by his hospital bed for hours then, telling him gently where he was and what was going on, and then telling him not so gently that we needed to get blood from him. I had to be firm. The NHS so often gets critisied but for me they continue to show how much they can do.

I was struck, as I sat there, how few staff were on but how important it was that they were there, how busy different people were on the ward we were on. They get paid, like all public servants but they don't get loads and they saved him.

My dad has been saved lots of times and I know he still isn't sure if he should be sometimes but when I get a text from him that makes me smile or I hear him bash into a wall  on his way to the toilet in my house I know he still has something to give, give to me. He is my dad and I love him.

Happy days

I don't let myself dwell on the VHL facts of life - at least I try not to.
But you can't always help it.

When I was at uni, a heavy VHL time for me I wrote a monologue short which I was quite proud of at the time. The girl I got to perform it, (she was old enough to be a woman but as I on'y felt like a girl and I am older than her it seems ok) was beautiful and thin. A friend who came to see it said she thought it was about anorexia. I didn't explicitly mention VHL, you need to let your audience see their own life not yours, I wasn't trying to educate anyone on the life with a rare genetic disorder I was just trying to express the strangeness of feeling like your own body is your enemy, that your very cells fight you.

Devilled Kidneys

One more to add to the collection and I'm being monitored.

But bloody well done NHS, honestly what would I do without it. We had a panel and we got great care.

I did the usual email to those people I assume care and want to know. I wonder if they do or if they roll their eyes and think, god she is all about herself.

I always make it sound as positive as possible and try to sound upbeat about whatever the news is. I wonder why I do that.

Dad is as is is, no change

All carries on.

Umm, opertation?/?/???

grrrrrrrrrrr

VHL wars

Something strange is afoot here in England town. The VHL community as it is in the UK seems to be having a hostile takeover.

I've no idea what's going on but I'm interested.

"What do groups do for you?" My mum never wanted me to be a member of any group but there I go on Facebook and other places to hear what others, like me know about it all.

Why do we do it?
I always felt so very alone when I was a teenager and at a drunken night near a computer with internet access I searched. I'd never done it before I didn't know it would exist out there in the world wide web but it did and there was so much information. I was at university at the time. I hadn't used a search engine for much before.

And now I wait to know the next steps of information.

Does it help. Dunno but I don't think it harms.

Out and not cancer

All done and he doesn't have cancer.

It's hard to explain but it was very difficult to be by the bedside for so long. Difficult in ways I hadn't expected.

Pancreas out - well not all of it

My dad did well today. He let them take out his spleen and most of his pancreas and the tumour to go with it. He is awake and at times smiling.
Phew, phew and phew.

what would you do if time ran out at 49?

An odd letter came for me today. Those of us who know, know that the print from your hospital when you don't have an appointment due is likely to take your breath away.

I have a new Dr now and I've asked to know my life expectancy. Not because I want to know but because for our plan to adopt we need to be able to tell any adoption agency (at least all the ones we have asked)

I have always been aware that I don't technically have as long as a 'normal' person but I assume that would be about 65. When our current government changed the retirement age I wondered if I would ever get to it. My father has had to through ill health. Money wise thank god he had his pension because he needs it. Will I see retirement, not according to the medium life expectancy?

I quote

"The actuarial life expectancy of patients with Von Hippel-Lindau is 49 years of age. More recent data suggests that those patients enrolled in the screening programme can expect a life-expectancy of 52 years median." There is more, about renal cell carcinoma which I don't currently have and now I might live longer...



Shit.

List of tumours to date Lovely VHL

1 optic nerve
2 spine
1 brain
1 liver
1 pancreas
2 kidney

8 then? Well that's what the last set of scans said but you know how these things are, I may well have grown a few since then.
I even forget some of them now. I bit like distant sexual encounters!

3 removed

So that's 11 in total.
"Count your blessings not your tumours" Someone said that to me... I didn't expect them to. I felt like telling them to fuck off because I'm not counting my tumours to feel sorry for myself, I'm doing to prove how strong I am.

And I am.

Do you remember the Hatfield-McCoy Feud caused by Von Hippel-Lindau

I saw something on this the other day, funny how it seems to still be a myth.

Anyway I wanted to do a different post because I wanted to talk about me!

I've been using Facebook forum on VHL a bit too much and I wondered if I should, my family are connected to that and then I remembered I could express myself here and not worry but hope - I don't know why - that some people will read it.

I was having a drink with a friends last night and we were talking about lots of things but VHL came up and she said she never thinks of it when she thinks of me. I was really pleased. I hate the idea that all I am is my genetic disorder.

I am not.

I bloody hate it all the same. I feel like a time bomb.

When will I next need surgery and when will it happen?

GRRRRRRRRRRRRR

Von Hippel Lindau is horrible.

Merry Christmas

I hope we all have a healthy 2012.

Each year, for as long as I can remember, has had some VHL related moment in it. Each time the ball drops we all hope that it will be a VHL light year, but the truth is of course that there is no such thing these days. Dad gets worse, mum and dad find life harder and harder, my sister does too.

I hide here in London and only look when I have to.

Other families have their trials and some have their tragedies. I think everyone must be quite bored of us. There must be a "oh, what now?" as they open the group email from my mum.

She used to use it to get discounts on shoes... ask me later.

"You've got to get something from this fucking disease." Shoes!

What do I get from it? Determination maybe, I got over my fear of anything new, I decided to live my life but I envy those people who didn't need a dead brother, a broken body and a genetic disease to manage it. Those people exist don't they, naturally determine people who make waves, make changes, make life for themselves and others.

Who needs a spleen?

The next stage in the saga of the family's health.

Dad is having surgery in July; that is of course if that makes sense and as yet we don't know if it does. Those of you who know about the pancreas will also know that once it is gone for there is very little that can be done. The tumour that started in the tail of his pancreas is now very big, last scan it was 5cm. So who have surgery or not... not my choice and it would appear not really my father's either.

They will have to take out his spleen too. I'm fascinated by the fact that in these modern times you don't need a spleen. 1 extra little tablet will be added to his massive load anyway.

I'm in a spiral again. I'm trying not to dwell and not to let myself feel too caught up in it but I wonder most hours if he is going to make it through. The worst thing is I know that part of all of us, dad, my sister, my mum and me are aware that if he does die, as horrible as this sounds that may not be the worst outcome.

I don't want my dad to die but I also know how miserable his life is at times and I don't know how much more he could cope with. His body isn't his own, his life isn't his in so many ways and if he gets to be free again, well. I don't know how else to express it but I don't know how much more any of us can do.

This disease has made us all strong and weak at the same time.

My mum has to go through so much.

Adoption

we are not sure yet and we really don't know if this will be the right thing to do. Just thinkingabout it at the moment.
Should we?

 

Virgin London Marathon

I was thinking of my sister running that far and the stamina it will take, the conviction and commitment to get to the end. She told me that to get her there she will be thinking of me, my dad and our brother. There are memories that will push her through; like the time they locked down the ward after I had had brain surgery because Myra Hindley was also having brain surgery.

My sister was trying to get me a bedpan and wanted to tell the press who were waiting outside the ward that I had wet the bed because they wouldn’t let anyone on or off. To do this she had to shout out 'my sister has wet the bed.'.

We often laugh about the things that happen in the days relief after surgeries, something many of us who live with VHL must do.

Where did my race start? Slowly that’s for sure - anyone who has seen me run will know that; and a slow runner doesn’t break a sweat and I didn’t. My father has had a number of surgeries ones I wasn’t alive for or too young to know about but when I was a teenager he had to have brain surgery that meant one evening I said goodbye, just in case the next time I saw him he was dead, or as my mother had warned me, brain damaged. He was fine and I jogged on further, still fine but then things started to get very difficult.

We loved my brother so much, and his death changed us all. Until his death I had experienced VHL as a novelty really, something that meant that we had tests and despite that nerve racking time when dad had surgery, there was nothing that hurt for very long. It felt like a half way point of the race, the hardest bit.
I had to decide if I was going to give up or carry on. It was one of the loneliest times of my life. It was at his funeral that I decided I had to carry on, make it to the end. My big brothers life was far too short but he never found out just how horrible VHL can be. I’m now ten years older than my big brother and I’m still going, even though I can’t see the end. He died before we all knew what a painful experience it can be. He did a sprint. The rest of us are doing a marathon.

So please give a little because the finish line should be hope and a cure which we can’t get without money!

UK donation are best through this site http://www.justgiving.com/Chloe-Doherty US ones through http://www.firstgiving.com/jorunning

A note from my sister

This is what my big sister wrote "I am not what you would call a natural runner or even an enthusiastic one at that, but after experiencing a crazy moment have enrolled myself to run the London Marathon on 17th April 2011 with all monies raised through my kind sponsors going to VHL charity. Although I myself do not have the gene both my dad and younger sister have (as did my younger brother who very sadly passed away nearly 15 years ago aged 22) so have experienced first hand the physical, emotional & psychological effects it has on those who have the condition and those who love them but don't.

Even though I feel like I have lived my whole life with the presence of VHL, I still feel I do not fully understand the condition and the implications it has for my family - after every check-up or series of tests it seems something new has been found or appeared. You come across very few people who have actually heard of the condition let alone know what it means for someone suffering with it - whilst training for this marathon I have re-trained and qualified as a Emergency Medical Technician and even talking to paramedics/nurses etc who have worked for years in this field are stumped when I talk about VHL!

Nothing I can do can take away my dad  and sisters pain/frustrations/worries nor those of my mum/brother in law to be/children/grandchildren or myself but I am hoping that when I cross that finish line on 17th April after 26.2 miles the money I will have raised as well as the awareness of VHL will go some way to funding more research into this devastating condition"

Happy New Year

I'm no nearer to a solution for the hole in my macular, one more specialist to see but so far it's has been a resounding - "probably better to leave well enough alone" and I don't mind, I'm getting used to not having that bit of site. Now I ask my husband to be
"Is that armpit clear?" and I'm thinking of training up regarding putting on eye make-up. If only I weren't so vain hey.
The brain has got a little something there that shouldn't be but so have 8 other parts of my body and right now I'm just letting it all be.

Down on my meds too. only need 5 and 5 now.

so dull really, for one with VHL things are plodding along and thank god for that because I'm getting married this year and frankly I could do without the hassle

My LIst

1 Brain
2 spine
1 optic nerve
2 kidney
1 tail of pancreas
oh and 1 liver

want one anyone?

Angioma and macular holes

I saw a second specialist today who said that I have PVT and that the tumour is sticking to the retina and so surgery would be extremely risky because even the slightest nick would result in a haemorrhage.
I only saw the specialist for a few minutes and after I recovered from hearing news I didn’t really want to hear I now have lots of questions and no one to ask so on the off chance you can help I’m asking this help group.

Q. If a macular hole remains untreated can you eventually loose all of your vision or does it only reach a certain level?
Q. Is it dangerous to leave a macular hole untreated?
Q. Is the only way to stop a haemorrhage to corterise the site?
Q. If there is a large haemorrhage in an eye is it visible from the outside?

update on this -
 Only reaches a certain level

nope - well I have to be aware of retinal detachment

Kind of but haemorrhages are not such a big deal, the blood is reabsorbed.

no, well not little ones

Sharing

nothing has changed

everything is normal

my normal 

Being normal

I've spent a week with my dad and his disabilities. We do all take so much for granted, such a cliché now but when I think of what used to be possible I realise how much he is missing. But my daughter doesn't know any different and as a result it seems to me that they have the best relationship out of all of us. She doesn't have any false expectation of him, she's only ever know who he is now and she loves him completely.
They get on, both as daft as each other. He winds her up; she winds him up. They play together and he is a proper granddad who does granddad type things.
So I miss parts of him that he misses but at least they are both enjoying their time together.

Fit and well

The scar on my forehead is from when I tripped as a child so not VHL related. 

My baby

My wonderful VHL free little one.
It is a good thing to be able to say, it is almost unbelievable 

My VHL free baby girl

the old fashioned way

This was how it worked the time before last

Dad and falling

It went well, but he fell over and now his face is quite a mess.
Small but significant up-date

Falling over happens a lot when you don't have good balance.

An interesting thing to keep doing...
sums him up
falling down, getting up again : repeat

Gamma Knife - coming up

it will be a week on Friday... The magic of sorting out a brain tumour without cutting open a skull. Takes about 20mins. I can't be the only one amazed by this. I can't be the only person who thinks 'too good to be true?' But maybe there were those who said that about paracetamol and the pill.
So once more my father will experience something that no doubt I too will one day endure and I am so grateful to him for being willing to do it. He does have a choice here. Some choice! I wonder if it (the tumour) were more deadly and by that I mean speedily so and not slow, eventually after horrendous pain and suffering and destruction of so much more, leaving only your soul to whittle away, just fast. If he would be being treated. I've gradually come to terms with the idea that for all the normal reasons my dad would probably prefer not to be here. He's apparently happy he has been this last year, a year since he tried, a year of wondering if he will again but that too has subsided.
He is here and part of my life and accepting the changes as best he can.
It is so hard but easier for me. I'm here. they are there.
I know I'll stay here, I stay selfish. I won't try to be 'a better daughter' I'll be me... and I'm always be grateful my dad was able to go first and that my daughter won't have to wait her turn.

gamma knife

Dad's going to have to have some gamma knife done... watch this space

My Little One

Isn't she wonderful?

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

If you do, and you tweet, please join the #welovetheNHS tweet spectacular
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 

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?

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.

Week 22

All is well as far as the baby is concerned. She has started to move about and I can feel her, and yes it is a She. I'm really enjoying being pregnant. I didn't let myself entertain the idea that I might be a mum that we could be parents and we are 22 weeks on our way to it coming true. It does feel like I’ve been pregnant for years not months but I’m not bored of it, I might get bored and I’ve been getting backache at the end of a day but I still love it. My baby.

On other news my dad hasn’t had any results as such but I always feel more hopeful when it takes a long time. It usually means that things aren’t a problem. But then they are, his balance isn’t any better and he keeps falling now. Injury list so far, finger and knee.

And my VHL health, well as you lot won’t tell; I’ve been getting some fluttery feelings around the left shoulder blade. It’s internal but just under the skin, a bit like pins and needles but not unpleasant. So I’m wondering if it’s got anything to do with the tumours on my spine. I mentioned it to my dad and he said it sounds like the sort of feeling he gets in his legs now the pain has been sorted through the medication. I’m not going to say anything to anyone else just yet. Even if it is the tumours there isn’t a problem, it’s not like they could operate while I’m pregnant. So apart from getting it out there in the open with you I’m not going to worry about it. Well not really.