Sunday, October 01, 2017

My dad, my hero

The man I knew as my dad as a child has long gone.
For a while a shell existed where he has been.
I think though that this new dad is really rather wonderful (most of the time)
He, while strapped to an expert, jumped out of a plane two days ago. Lost a converse trainer but enjoyed it.
Why? Why not.

I explained to a new, potential friend that he started really trying again when he saw that I could give up.
I was very close.
That month felt endless.
I knew I could be a shell too.
I have it in me.
But I was saved and I live again.
So does he.
It has to be these big, larger than the disease, events.
He can't dance, so he flies.

I can't have a baby

I love my daughter, she is our surprise and delight.
I wanted more, I don't admit that often. No point.
But I get a pang of jealousy when I see the bundle of happy faces in pictures or in really life. I know it would be harder but I wanted a noisy family. We're a very controlled and happy  3. The magic number.
It's on my mind that even if I were to have more it's such a reckless thing to do. I'm almost 40. I'm diseased. Yesterday my husband almost didn't get the condom on in time.
I feel sad that it was the fear of the health consequences that have left me in fear and a secret part of me, ever so slightly thinking, ah but I'd have another one. Then I push that away and cover it with the facts.

We'd have to leave here. It would be a logistical nightmare.

Friday, September 01, 2017

First proper day at my new job

To go from being in charge of so much, to now so little is strange and healthy. Yesterday I happily finished a meeting and went home, cooked, listened to my daughter read and had a relaxing early night. I've read books, done a bit of prep but just enough for now.

The internet is so slow there isn't really anything else to do.

It's surprising but the lack of stress and tension is the best part of this change.

There is some, but that's so much more about where we live and getting used to that, but once we are, well time will tell.

So today I go off to be a new member of staff, not in charge of anyone really. Just the students and I'm told they are a delight.

Freedom from the last year and a chance to start again. I'm privileged in so many ways.

Sunday, August 27, 2017


And here we are, a few stressful moments but 3 days in it feels good. Feels like the right choice. Live each day.
Some of the worries have dissipated and I feel happy.
Happy in a way I haven't for such a long time. Not the extravagant happy that I've felt. Not the guilty happy.
This is the happy I've missed. The soft curl in your mouth because a bit of you feels genuinely content. The base level of happy that keeps you safe and warm. The opposite of depression happy.
The no frills, comfortable happy that I took for granted, until I lost it.
It's a fragile happy still, is doesn't have it's strength back.
But if I nurture it, it will.

Friday, August 18, 2017

Saying goodbye for now to my dad

It's never comfortable for my dad to travel these days, it's hard for him to get about but he does it anyway, when he can and for a good reason.

He came here yesterday with his carer, made it up our steps, with help and we had the lunch I had made.

He told me he loved me, how proud he was of me and how sorry he was he had given me this disease.

He explained how he feels he is deteriorating still, that each time he gets ill, he doesn't fully recover.

He was saying goodbye.

Wednesday, August 16, 2017

Turning 39

It's another year and another achievement. Getting here.
According to that fateful letter I've got 13 years left.
Better make the most of them.

My birthday also showed me how loved I am and how I've learnt to keep amazing people close by.

I'm a lucky woman with an unlucky disease.

Monday, July 24, 2017

Dubious and misjudged?

Mental health is a fashionable topic, impact on stress, work related or otherwise.

In my last year at my last school I was told that some of my decisions were dubious and misguided.
Those actions, as far as I think they were referring to, were to be there for a friend who needed some unconditional love.

The accusation was thrown at me by someone who couldn't see the truth behind my actions. He saw them only as an attack on him. He's freely admitted he has trust issues. He told me he was angry with me. But hadn't sought out any facts just heard parts and jumped to conclusions.

This was months ago and it still makes me angry.

But a great sadness occurred, one of his closest friends committed suicide. I offered him my support, regardless of my feelings I knew he was in a bad place. He didn't take it. How could he. I know he'll have wondered if there was anything he could have done to change things. Perhaps given him the job we both went for. I know that crossed my mind. But he could have been a better friend. Maybe if more people helped with stress at work. Change that culture? I bet he's thought of all those things.

What I hope is that all of these things mean the next time there is a chance of helping he does, the next time he listens well to the people who care.

Sunday, July 23, 2017

The residue of pain

Term is over, and so to is my time at that school.
I left with a sadness and sense of defeat, I felt a bit lost and, although loved by so many there were key staff who made me feel completely disposable.
While there I did so much, helped so many and because I didn't have quite the same vision, the same sense of urgency I was rejected. That's how I feel.
Three years.
I expected to be there so much longer, I felt part of their #family. Until I was clearly the black sheep.
Lessons I should try and learn, (but never seem to,)
1. don't rush back after surgery. For a while, people are impressed, but often, if your pain and disability aren't seen, then they don't exist for others.
2. Be careful who you trust
3. You're forgettable
4. Your leader needs to be morally aligned to you.

I'll grow from it.

Now I need to wash that away. Move on and be grateful that I could make the difference I did.
Next adventure.

Tuesday, July 18, 2017

10 years of love

My little girl turns 10 today. She is my joy and my heart.
When people discover I have VHL and that it's genetic they often ask... And your daughter?
The relief I see in their face is sometimes overwhelming. 'I know' I say. 'I'm not sure if I'd be able to cope if she had it'
Or my other response 'we had her tested at 3 months, best day of my life knowing she didn't have it'
Which leaves me thinking how awful it must be to have children with it, and reminds me how awful it is to have it.

I'm bargaining with fate, asking for 2 years please, is that so much to ask. Two years of tumors control. I can't even ask for tumor free. That's not something I can ever hope for.
I'm a defect after all.
But if the universe could give me the next two years (four would be fabulous) to have an adventure, to treat myself and my family to a break from VHL, that would just smashing, thanks.
What will I give in return?

Saturday, July 15, 2017

Forum or not to forum

To not feel alone, no one really is anymore but when you see others with the same disease with you share you know you're not alone.
But today (and others) it doesn't seem like a good plan.
I don't want to see the potential problems today. I'm fed up with the constant struggle I find myself in with the never ending fear of 'what next' what else can go wrong.
We're trying to escape...
I might silence those for a while to help me do a better job of pretending everything is fine.
All is fine.

Sunday, July 09, 2017

A genetic defect

That's me
At a cellular level
Moral too
Aren't we all
I fight an inner struggle that I imagine is familiar to all of us who have the privilege of wealth, comfort and time. I don't like myself. I don't like the way my body fucks me over.
I don't like how much I dwell on the negative things I do and say.
I'm struggling to forgive myself.

Thursday, June 22, 2017

Past, now

I'm struck by how much of my past impacts on now. I'm so desperate at times.
So sad in others.
I find myself angry very often.
Near to tears the next.

Monday, June 12, 2017

Pancreatic tiddlers

This years clinic was a good one. Perhaps the almost the best I could have hoped for.
Two new tiddlers in my pancreas. So far untouched but now they add to my list.
I'm fit for work.
My father needs gamma knife.
I did the usual optimistic posts and messages.
But it's the hidden fear that it evoked, more, my list grows, more, two new ones to watch, more, worry, more, more, more.

Each hiccup, each twinge, each sensation reminds me... Life limiting.

Wednesday, May 31, 2017

A Dr, nurse and a PHD student walk into a room

And it being just the three of them it was bound to be a good day.
The VHL clinic went well. A couple of new tiddlers in my pancreas but no action required. Dad is likely to have gamma knife on a brain tumour but that's a caution thing.
And this means we can go, we can go on our adventure.
Dad doesn't need me in the country for gamma knife. That's one of the easy ones.

Thursday, May 18, 2017

Time to worry

I can't help it.
I'm trying so hard not to but worry I am.
The unsteady feeling is creeping in, the doubts and fears.
I'm worried.

Friday, May 12, 2017

Places and the past

I'm in Angel
Travelling home in an uber. This place holds lots of happy memories and many bus journeys. It seems to have a draw.

Thursday, May 11, 2017

Time ticking, machine banging

Annual MRI. This year it means so much, so many years it does but this time our dream relies on this being 'normal' for me.
No growth and no new ones please.
And if there are any changes they are very much... We'll keep an eye on that.
Grow slowly

My coach used the phrase 'life limiting'
Am I puzzled by this.

I'm in the hospital now.

Tuesday, May 02, 2017

Uncomplicated boredom

I was bored at work today. Not sad, or lacking confidence. Just common or garden bored.

It's quite nice

Saturday, April 22, 2017

Climbing a rope ladder

Recently I went with my daughter and a friend to Go Ape. I hadn't considered I'd be afraid but as we moved onto the first off ground activity I was filled by with trepidation... The rope ladder.
I've had anxious dreams of these, clinging on swinging and afraid.
As I was suddenly faced with this reality I gritted my teeth and climbed. Not as bad as the dream but unpleasant. I did it for my child and told myself each run, I don't like this. I don't have to do this, I'm not going to keep doing this.
I did, of course and I climbed the next 8.
The reward was experiencing something special with my child and the zip wire at the end of each section.

This week I've had a similar experience of this trip. Elements​ of it have been less than fun.

It's made me realise how much I like to do these things with people, with my family.

Thursday, April 20, 2017

Karen Country Club

A number of firsts for me over the last 24 hours.
- flying on my own
- riding in a golf cart
- watching men play golf while sipping lemonade
- being in a Country Club

None of this would be happening if I'd even been 10% more content at work. If life hadn't gradually started to make me feel sad, most of the time.

Make lemonade

Saturday, April 15, 2017

I'm angry with Verity

I loved her.
I met her at 6th form college and she noticed me, made me feel like I belonged. We spent hours together and we laughed, cried and more. We knew each other when we lost our virginity. She was the first person I called when my brother died. 
We took silly and dangerous decisions together and apart and talked and analysed them. 
She was beautiful, stunning. The Disney film Pocahontas had not long been out, she looked a bit like her. I knew the vulnerable side of her and she knew mine. 
I thought we would be friends for ever. 

When I went into hospital she didn't visit. We never recovered from that.
I hated the fact that she didn't come and that I needed her.
I don't need anyone. 

I'm not saying it was her that made me that way, that damage had been done long before that. But that really hurt. I blamed her boyfriend (who is now he husband) I didn't want to blame VHL. 

I only visited my brother once when he was in hospital, no once when he was alive in hospital. The next time I could be bothered to go he was brain dead... then I stayed for the three days. We stayed at a nurse residence, slept on the floor. 

I know he'd have forgiven me for not coming more. But I haven't forgiven myself. 
Missing him nearly 22 years later. 

Have an adventure

Making the changes.
For many years, when offering advice to the youth I have the privilege to work with, I say...
Be the change you want to see in the world.

It is profound and useful advice and I should follow it myself. And it starts with your self


that's advice one of the people I trust the most in the world often gives me and others.

We, us as a family, me we're going somewhere new.

I've chosen change...

So far it is keeping me going and the exciting possibilities of a different chapter are making each day liveable. It's taking me to Kenya next week, for three days. It feels terrifyingly amazing.
I think though I know which school I want... of the possibilities and the choices I don't have one yet. That part of fate is still someone else's choice. But one of them will make it, maybe more than one and then, oh how much I hope that it is one that leads to years of happiness.

Could I ever live a mundane life?

Saturday, March 25, 2017


We're making a big decision but I'm so nervous that medically I'm going to be stalled. How do people do the thing where they know they might not have the right medical insurance.

Saturday, March 18, 2017

Forced sadness

It is that time of year. The memory of the years without him. Grief is often the empty gaps.
Self made grief is a hiddeous self harm.
And now I need to stop that.
I'm quitting work.
I'm leaving.
I'm stopping the self harm.
I feel so much better knowing I'm going. To the point where I'm sleeping better and I'm enjoying my free time.
I'm smiling and I'm not falling apart.
I haven't cried as much this week.