Endometriosis

I've got that too.

I found out a few years ago, I had asked for investigation, because things had just silly having previously assumed for all of my period having life that it was something to do with having and not having babies.
As far as it goes it isn't so bad but of late it's been annoying.
Clots and confusion. That's my main experience of it.
I wonder if it is connected to VHL.
The professionals don't seem to think so.
Just another thing.
But it's fine
Always fine
It's ok everyone
It's fine
.

Penn Y Ghent

Yesterday we set out to relive a moment in my father's past that meant a lot to him. We, a party of 9 in the end, for his 4x4 wheelchair set out up the path that would lead to the hill (mountain) Penn Y Ghent.
For the first time, in a long time he was doing something with a bit of drama, and the path certainly provided a bit of that.
On occasion I thought his chair, and him in it were going to topple over. But we kept going, limited, it seemed by the battery rather than his determination or stamina.
My daughter was very excited at first, she hugged him tightly on arrival. Admittedly she got a bit bored towards the end but finding worms to rescue from puddles helped.
We didn't get to the top, in fact we didn't get very high. The pace was slow, but we did it.
I'm told on his return home he had a huge smile. He wants to try again.
What I found interestingly sad was that during that time, and the meal afterwards he was so awake, I could understand him better and he engaged. It's sad because I don't see that side of my dad much.
Perhaps this is the start of things to come, maybe my dad is still in there and he's able to be part of my life.

It's a no VSO

I got the following email today, it was going to be my next chapter, it was going to be a way to take a different direction. Now I have to think again. VHL getting in the way, not allowing me to move on, not letting me be who I was hoping to be. I feel really frustrated and I feel like I've let my husband down. 

I cried when I read it. 

I thought it would be ok. 

I was wrong. 

Thank you for your email and I apologise for the delay in reply.

In view of your medical condition, I am sorry that I think it would be difficult to find a VSO placement for you which would be able to provide appropriate medical support should you become ill at placement. 

Although it may be possible to travel annually to have follow up such as MRI checks, I would be much more concerned about you becoming ill at placement where medical facilities tend to be very poorly resourced.  Unfortunately the lack of adrenal glands means that you could become very ill very quickly if not given the correct medical management. 

Infections, including gastroenteritis, are fairly common at placement.  The increased support you would need in combination with very limited medical facilities and difficult logistics of moving you to medical care, mean that this could pose a significant risk to your health.

I therefore feel that a placement with VSO would be unwise.

I am sorry that this may come as a disappointment.

Best wishes

Susanna

And now it's goodbye

Appointment started at 2:15, drops and two scans done in relatively quick succession and then over 2 hours wait to see a doctor.
For those of you who attend clinic 12 or many other clinics at Moorefields you will know this wasn't unexpected. And as I predicted my eyes are the same.
Prof Webster appears, wants my doctor, notices it's me and we have a chat.
I'm going to be leaving the care of his team, I'm going to let my VHL team check me out from time to time. And after over 12 years of waiting a really really long time to see a doctor, the scans, the chats the, this is happening and I'm done.
Relationship over.
We agreed.
Mutual.
Respectful.
I thanked him for his care over the years and he said 'you're welcome.'
I walked out, blinded only a little bit by the sun and resumed life in the world.
Bye bye.

Moorefeilds, it's been a while

I'm supposed to go once every 6 months, I think it has been over 2 years. Cancellation and life getting in the way.
I'm not expecting to have any news, I'm actually expecting to be there for over 2 hours and then hear that they'll see me in 6 months.
Thankfully that's the dull part of this disease, the dullness of appointments and no news. We spend a lot if time bored, sitting through the dull of the dull.

Complain and complain. 

I'm angry now

It's the summer and, as I've mentioned time to relax, heal. But I'm just a bit too angry. I'm cross with the year I've had and I'm not sure how to get over it.
I chickened out of a counselling session I had arranged. Partly because I was an idiot and booked it on the day of my daughter's birthday, but also because I wasn't ready. I still had some days left at work. I figured it would weaken me. I didn't have time for that.
So I told myself I would not work for a few days and relax, do very little. I have done just that and I find myself angry.
I'm angry that I didn't have the year I wanted and it's mainly  (not entirely) VHL's fault.
I've had time and space but the draw of work email dragged me back in. Each time I've looked, I've felt angry again.
Other people are very self centred, as am I.
I think I need a total detox of social media and email. I need a proper break. I need to break from the whole universe.

Despite being almost half way through the break I'm still angry.

Settling into normality

The all clear and the end of term. There will be lots of not doing much, seeing if I can heal mentally and do a bit of working on the physical.

https://vhl.org/about/resources/vhl-facts/

A sad day

My uncle died yesterday... he had cancer. Nothing to do with VHL. It's very sad. Cancer gets there, doesn't it.

All checked up and burden free

Dad and I had our annual review and phew, no surgery planned for this year. I know that this might change. Last year taught me that the very unexpected can happen with VHL, but hopefully this year will be OK.

HAPPY

https://scontent-lhr3-1.xx.fbcdn.net/v/t34.0-12/fr/cp0/e15/q65/13342287_10209732071367443_335868103_n.jpg?efg=eyJpIjoidCJ9&oh=e05112f52f48e9c182d59881df6e8f2f&oe=575707CC

Relaxing

A year ago I had a week off and still felt like shit. 

This time I had enough energy to get home and go skating
Times, they are a changing

Climbing Snowdon

My dad just text me to ask if I'll climb Snowdon with him. I said yes straight away.
The logistics will need sorting
For example how the hell do you get a wheelchair up Snowdon?
How many days will it take, considering he goes to the loo at least once every hour and stays there for ever.
When and where does he intend to nap?

What if we get stuck...
But I'm saying yes because he's my dad
He did it when he was much younger, healthier and stronger. He did it with my brother.
More importantly, though is that it means he's living. He's doing something to add value to his life.
I feel proud of him right now and I haven't really felt that for a while.

Why worry?

People worry about me. I've heard it a lot, more so recently. I worry me.
Should this disease have more of an effect on who I am? Perhaps it is, I go back to my love of drama, the drama of life.
This week I cried in my office. A friendly face offered help, advice and a much needed ear. He beard me say, 'why can't I just have a bit of boredom in my life.' I meant it at the time, but actually the truth is I don't think I do.
Facebook provides me with the outlet to get attention, I like attention. So when I post something I want lots of likes and things. I'm not sure I want people to worry and this happened. I was unclear and I worried people. I didn't mean for that, but they worried all the same.
The attention I want is about how great people think I am. Because, well like everyone, I'm not at all convinced I am, great. I'm not sure I'm good.

Negative bucket list

At the pub, with my favourite colleagues, I was amused by the way the conversation went.
I'm aware that when someone names a generally shite experience, I've nearly always got a personal example or a very close, 'my sister 'my mum' moment. So as we joked about it, she said she would write my list. 'Is there anything you'd haven't experienced?' she laughed...
'Skiing' I replied.
It got me thinking though, my house hasn't been burnt down or flooded. I'm devoid of most natural disasters.
But actually I crave experience. Big ones, life changing ones. I don't think you can have my life and not. I think it's  OK to have a very long negative bucket list.
There are things I know I never want on it: things my parents and sister have had. And we carry on.

Today I am strong. 

Today I cope and live. 

Today I know that a chapter has started to close and yet, the book is nowhere near finished.

Another appointment

They roll around, appointments but this time my anxiety levels are peaking.
This time my spine, this time I'm nervous of the hidden.
I don't want more surgery, I don't want to take more steroids. I want a normal body.

When are you fully recovered?

This week has been a test for me in terms of my inner strength and ability to cope. And today I'm knackered... Do I suck it up and go to the theatre with my father in law and daughter or do I listen to my body and sleep.
I can't decide.
It was full on at work, I had to do something that wasn't nice. I had to tell people that might lose their jobs.
I'm so very tired.

Decided

I had an email today saying that although I had leadership potential I'm not on the course.
I was relieved.
I was hoping that would be the case as this holiday I've spent more time thinking about what's important to me and my family.
Having that time showed me one thing was time.
The other reason I'm glad is that quite a few people I respect, do not respect the organisation. One, very newly made influence, my coach almost told me she had no respect for them at all.

I haven't had any feedback. I suspect it's my lack of ability in the 3 online, timed tests. These were types of IQ tests. I nearly always fail those.

It could be that my style, my philosophy of education came over too strongly and I'm not their type.

Could be I'd only just got back after sick leave and they could sense how warn out was.

Maybe a combination.

But whatever the reasons I am glad. Now I get some time.

Let the fates decide

It's holiday time... I'm on holiday at the in-laws.
All very pleasant and relaxing.
I'm happy not to be at work and to be healthy at the same time. It feels like a long time since I've been well and now I'm here I'm having a bit of a re-think about my next few years.
VHL put me into a place where I was clear I didn't want to miss any life. My brother dying and his eulogy made me very determined to ensure I lived my life and didn't turn any opportunities down. Mostly that's always worked for me but lately I'm wondering if I've got the balance wrong.
That's probably got more to do with other life experiences and a freakish cyst around my brain tumour. I've said it before but I lay there, day after day, suffering in ways I can't describe and I didn't feel I regretted any choices I'd made.
I wasn't proud of everything I'd done, but I didn't regret it.
After being back at work and being back to my normal self I've been struck by how much I've let work consume me. People have seen my stress. I wonder if much of it is because they expect me not to be coping, that it is natural to be stressed. But truth be told I feel like there are other things I enjoy that I'm not getting the chance to do.
I love my job, I want to love it like I used to. That might mean taking a step back.
I'll let the fates decide... If I get on the course I'll do it. If I don't I'm not going to worry about it.
If I don't though, I'm going to have to get better at saying no.
If I'm guilty of being weak, then it's at saying no. I'm full.
Life work balance.

I am drunk

Tonight I went out with my skating peeps. I considered friends as a label but it isn't quite right.
It's tomorrow already and I'm tipsy to say I  the least.
I nearly got on the wrong bus... I am clearly enough aware of my necessary journey to not do that.
What made the night VHL related was the number of times I and others mentioned my brain tumour. It felt partially heroic.

I was the only one (except a disgraced) from my original fresh meat. 
I survived.
I did it.
I won.

Breaks my heart

I'm home for Easter, just a couple of days. We had lunch today, the youngest of the family, my husband and I put the food out. So far so ordinary. My dad wheeled to the table and a plastic apron placed around him.
I served him food, cut up the bits that weren't already bite sized and sat next to him. A small gesture of understanding but I'd made sure today my mum wasn't sat next to him. I did the subtle catching of the fallen large bits of food. Then at dessert he couldn't feed himself. I helped, I carefully put the spoon in his mouth and helped him finish his meal.
He then had his coffee, then he went to the loo, all on his own. This time.

My once strong and independent father tries now to be independent, just a bit. 

And each time it breaks my heart, I see my mother's face look exacerbated by the crashes into walls and dents in the furniture. I see how trapped they both are and I want to free them both. But I also don't want to be here often. I'm weak that way.
I see it as one of my possible futures. I notice my arm all the more, I think to the day I need to be fed and use a chair and wear a nappy. I think of my husband feeling trapped by me and wishing he'd taken a different path. Who knows, he might still. There's time!

Feeling a bit sick

I don't feel 100% today, end of term and a few too many the night before last, my little one has had a fever. So this feeling is completely normal but I'm having a mild freak out. I feel dizzy, it's a feeling I now associate with the month of horror, the time in my life when I was so completely afraid that was all I was ever going to feel again.

I've done a whole term at school, cried, been near to tears a great deal and who could blame me? I don't know how I feel about everything but I do know that, not for the first time, the fear of VHL is getting in my way more than I'd like it to.

"amazed at how well you've dealt with it" I know loads of people think I'm great because I've bounced back. "I have nothing but admiration for you on how you've come back" and the more honest one "I'm not sure you're coping" even though I got in every single day and haven't quite dropped any balls just not been juggling them with style and grace.

They feel sorry for me don't they... that's the truth and so in a way I'm never going to know what a none VHL me is capable of. And as there will never be a non-VHL version of me perhaps I just have to get used to that. Grrr. I wish I knew if anything I do is good enough, I know I'm not good enough for me. There's the real pressure.

So it's Easter Saturday, I've sent some bits and pieces for work already and done some rehearsal for a play I'm in tonight, I've watched TV, I've had a long bath, I've loved my daughter, I've been made food my my husband and now I'm blogging. I'm trying to clear my head. It isn't working yet. I'm still feeling very unsettled and I think  it might be because my husband comes home with me tomorrow and I'm nervous. For my life to go back to the pre-brain tumour normal, that has to work.

On top of all of this the bugging sensation that some people are always right and in my sense of urgency to move on with life perhaps I'm in too much of a hurry. Give a girl a deadline of 52 and then scare the shit out of her at 37 and give her constant reminders of the limitations of the NHS and you will end up making her move too fast, do too much and live a life that would have been different.
As clear as that is, and as much as that 'makes sense' to those not in the know, I know I bounce from tragedy to crisis to emergency to the hideous truth of everyday, I haven't got time to slow down and reflect and think and value me.

What do I actually want from life...

Time and a diary

I write a diary to my daughter. I started it when I was told I had kidney cancer and that the operation was a difficult one. A nurse suggested I prepare, just in case.
I survived that and the next operation too. I write to her about her, how she is in my life and what we share.
I sometimes offer words of wisdom, but mostly I say how I feel and what we've been up to.
Recently the times in between writing it have become bigger, over a week, almost two. This isn't because I'm doing lots with her but that I'm busy with work, busy with things other than her.
I need to address that, I need to think about my family more and spend more b time making some memories.
She likes memories, she starts many a conversation with "do you remember when..." I dying know if that's normal for an eight year old but that's all life really is, making memories. Thing is, you have to do stuff to make them.
This Easter I intend to make a few fun, happy memories.

The difficult week

This week every year is hard, the hump in the road that I know I have to get over.
It was even harder this year, I woke up on the 15th knowing it already hurt. I warned a colleague and cried on way to work. I got through the first couple of hours. Then I cried again, I sucked it up and got through another 2 and then I couldn't quite do it. A word of kindness at just the wrong moment and I was gone and for the rest of the day the tears fell.
They fell while I did my job, only in the cover lesson did I just about hold on. I cried watching my daughter swim. I cried silently while we drove home. I cried while I cooked dinner. I cried answering emails, I cried myself to sleep.
I cried because I miss my brother so much, I cried because I was relieved, I was sad, I felt alone, I felt loved and rejected. I cried for all these reasons and some more besides.

I cried because I couldn't have what I wanted.

Grief took me over for that day, and I let it because I was allowed on that day.

I need another day where I'm allowed to do that. I may have to wait until next year now.

I thought I had a lot to say

Have I really been changed or am I simply already back as I have always been?
What makes me happy, should I be striving for that or are we all better off if we strive for a simple contentment. A friend.

I know my life hits some extremes for 'normal' people and I haven't chosen that but after all this time and all the stuff I am so stupidly used to it all, that an ordinary life feels so mundane.
I need to feel happy. Some days I do, some days I don't, I suspect that is what is normal.

I don't know if I'd be different if I didn't have VHL. Would you?

A different body

I've been back at work almost a whole half term.
My body is getting used to the stress and strain of the job again. Lots of walking, lots of getting up and down stairs and the roller coaster of a 'normal' school day.
I love it.
My bum is firmer, my legs are stronger and my tummy is getting just that little bit podgy again.

Who would be a parent

I refer you back to 'Be the Verse'
so painfully true.

It does me good in my role as a teacher to be on the other side, to sit in a  room and hear things about my child. It helps me remember when I have a child who needs help that the parents should know, have a right to know and maybe, just maybe know more than we do.

But yesterday it took me back to that level of vulnerability that I have been experiencing a lot of late. Today I'd bounced back. Yesterday the tears were just sitting there - ready and willing.

It isn't surprising though is it - a very good friend of mine mentioned recently that she knows people who are find with the mundane, but she knows I'm not. Not sure I've ever had the choice. And I don't choose this, much of this happens without my permission. There are days when I would happily stay in bed all day, stay on the sofa, days when I don't want to do anything at all but they are rare.

Most days I want to get up, be alive. Who doesn't want to be alive?

My daughter is anxious - she had nightmares ones that 'flood into her day' she has only told me about 1.
I see a child who worries in a normal way, I can't lie to her, I can't tell her I'm never going to die.

Are we getting back to normal?

yes

It's snowing

There is snow on the ground, I called for my daughter to come and see it, I still get excited at the first real snow of the year and so did she. Then we went back to the warmth of the front room, to watch TV. A peaceful Sunday morning. As it should be.
It has been anything but a peaceful week. I've been back at work doing normal hours, not as many as I usually do but I've lasted the whole week, not teaching too much yet but getting back into the swing. I love my job, the sheer variety of events in the space of one hour would have many a mind boggling. Friday was the highlight, I made mistakes and I didn't get everything done I wanted to but I came home feeling great, buzzing from the joy of a successful day. One where I had felt respected, needed and valued. As I say, I love my job.
My husband didn't seem to care, he was in a bad mood, he went out again - to a meeting, more work for him.
My daughter and I went to a restaurant and met my mum and sister. This is a highly unusual event, they live over a 2 hour drive away and this was happening because they had both been in the hospital with my dad, this week he had spinal surgery.

On Wednesday evening, after a day at work I came home, where my mum was still wondering if she should go into the hospital, still no news. We went in together, and after some questioning and realising he was still in theatre we decided to wait just 1 hour longer, check and see if he was out, and if he wasn't go home again. We went back and he was out, lying with all the wires and tubes and he was ventilated, they were breathing for him and he was being kept asleep. The memories of my brother in that position overlay my father as he lay, cold to the touch and still. My dad is rarely still. We both kissed him, gave his nurse some advice, including what to call him and found out they knew very little, they would only know if he was able to breath on his own when they took the tube out, only then too would they know if he could move his body.

We went home, got a taxi, sat holding hands in silence most of the way, unable to speak, unable to really comfort each other except for the fact of being together, which was important. At home my husband was doing chores, the cat shit chore to be precise. But even after that he didn't comfort me physically, I wondered why. I never ask. I went to bed early, knowing that in the morning we would find out and knowing I needed sleep.

Mum sat on my bed, asking if she should call, it was about 7:20am  - "yes." first attempt there was no answer, second gave us the news we wanted, we think we wanted. He was breathing on his own and could move "all" his legs. I was pleased, relieved, but I couldn't shake the image of him. I went to work. No one asked, to be fair not many people knew, but the ones that did, didn't ask. I felt let down, lonely and angry. Then my Head did, he asked, I faked the happy response everyone wants.

I carried on my day but I was over sensitive to criticism. Finally I was asked why I was in a funny mood. 'A difficult week' The penny dropped and at last someone who mattered gave me some much needed support. I gave them the honest response, not the one they wanted. I cried, I let some of the pain out. But I ran away from it. I didn't stay to be comforted properly. I have my reasons.

That evening I went to the hospital, took my daughter, saw my dad, alive and moving and grumpy. Phew.

Friday I was the happy I had faked to my Head the day before. Until after the meal.

At home my mum was in a very emotional place, after all she really had been through it, but from somewhere, and I still don't really understand what happened, what has always been a rather awkward relationship between, my husband and her, they had a - well not an argument. A thing, he lost his temper with her, she played the emotionally betrayed mother-in-law and my big sister ran away. I wasn't even in the room, returning to a silent husband, retreating sister and weeping mother.

In the middle I stayed, until he left the room and I talked my mum down from her emotional cliff edge. My sister returned, explained her perspective and we sat discussing this and everything and nothing. He sent a text the next morning to apologise to her, she sent a politicians apology in return and we currently live in a state of uneasy silence with neither of them having physically seen each other since. The two most unstable yet constant and consistent people in my life have returned to their homes and I've stayed here, not knowing what I really think or feel about any of it but happy to ponder it on the phone to a friend and text others of the saga. A good story to tell - not like I haven't got enough of those.

A blessing in all of this is just how oblivious my daughter is to it all.

Not sure I'll be spending much time with my mum and husband in the same room again. it's like a divorce!

It's all about me

What a week, much like others I have had but still I think remarkable. I went back to work and survived, but the bit that won't leave me this week is the conversation with my neurosurgeon.

The pins and needles in my arm are not about my brain but my spine.

Today, Sunday, my parents will arrive and then my father will go to Barts, again and then to The Royal, again and then, all being well to the operating theatre to have another spinal tumour removed.

You can see the remarkable connection.

He is going through this and I am thinking of me.

Phased return

Last time I went back to work after surgery it was quite straight forward, I'd only missed 3 weeks and my job was much more contained. I'd planned for my absence and so I knew what I was coming back to. I knew my colleagues well too and they knew me. It feels very different this time and although I want to go back, get back to normal, I've got the nerves of the first day with the added fear that I'm useless and no one likes me.

Extreme I know but I've changed and I don't know what my job might be and how much other people have done and if they even want me back. Crisis of confidence?

Phased too, slow, not right back in. That's why I'm sitting here and not actually at work yet, I'm going in later. This is because my energy levels are lower than before.

VHL gets in the way, this operation was unexpected and I couldn't plan for it, it's taken me by surprise and so are these feelings I'm having.

I hope it's better than I'm expecting and that there are some good old silver linings to this too. Perhaps I'll get some changes to my role that will work out well, perhaps my show of strength in the face of adversity will convince some people I'm not as bad as they thought I was. Perhaps.

Last Christmas I gave you my heart...

What a year, as always... many people write something in your Christmas card along the lines of have a great 2000 and, the next year hoping to be better than the last. They used to, quite a few of my family and friends gave up saying anything like that a long time ago. I only got one 'let's hope 2016 is better than 2015' And I do I really do, it was a shocker of a year and at times one of my happiest.
But Christmas, again one that could be the last, my dad again. Spinal surgery, again, risk of... the usual and the high risk.

I've had one last Christmas in 1999 when I had my brain surgery booked for January 2000. The bringing in of the millennium was the grimmest I'd ever faced. My sister and I sat on the sofa in my mum and dad's front room and tried not to say the things we were thinking. I said after the successful surgery that I wouldn't do that again, last Christmases are rubbish, everyone tries too hard, they are tense and it just makes you sad. I wish I'd been there (at the meeting) to tell them that when they were given the possibility of an operation date of 23rd December, they went for 13th January.

This Christmas proved to be all of the parts I hoped it wouldn't be. Of course the bits I did want were there too -  Initially I had that brilliant feeling of a proper pile of presents under the tree, I had two stockings! My absolute favourite bit. My daughter had a great time and I went to church and sang the descant to O Come all ye faithful. We ate too much food and I was recovered enough to drink and get a bit tipsy. But along with those bits, there was a huge amount of tension, short sharp responses, snapping and criticism galore. I was no longer the flavour of the month, I could do no right and my sister seemed to fluctuate between joy and irritation. There was of course moments of fun and joy, laughter but t didn't last long and when you can't even lay a table without getting something wrong the days are like walking on egg shells. Who'd have thought that less than two months ago I was a darling daughter, incapacitated and in fear of what miserable life might await me. My mother holding vigil at my bedside. Now I am the same old pain in the arse I was before.

My mother is always one for the drama and looks for the absolute worst possible outcome. It comes in handy sometimes, when I need to feel miserable, when I need a good cry. Why is this relevant? Well because now she doesn't know what the worst or best could possibly be, there are no good outcomes for my dad any more. The best is simply that things aren't more shit! And this is what partly made this last Christmas so miserable, so mixed so odd and so oddly familiar.

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?