Life is a long game, if you're (un) lucky

One whole year.
It reminded me that I'm in charge of this. This life. This journey.
I'm in a state of neutrality right now.
I've decided to be brave, to call a bluff and commit to this, this life.
I've chosen it and with all the inevitable frustrations and pleasant irritations this is my life
I've taken a stand in this anniversary.
Today my daughter asked me if I missed my brother and I knew I did. But more, I missed knowing who he could be now.
And with that I realised I'm me.

I'll forget that in due course, but right now...
I'm no body's fool.
I'm a warrior.
I fight and I win.
I've lived in fear and conquered it and I haven't ever let anyone truly get in my way.
I've let myself love with all my heart, even when there was a shield refusing to accept it. And I've stood my ground in the face of horror and pain.
I will not be sad for the sake of it. I will be sad for you. I will pity the fear that you allow to control you and I will lead by example.

I rise because I've learnt to.

I survive because I've learnt to.

I thrive because I know when to conserve and gather strength from those who love me.

Good bye.

The gaps

I had an interesting WhatsApp chat with my dad yesterday.
I asked him the biggest gap between surgeries.
13 - 30
Not bad.

I think those who have proper cancer might call it remission.

We then remembered the other ones, how many, what they were. There e 7 or 9 he couldn't quite remember. We didn't what to count the radiotherapy as.
All very matter of fact.

He's always been cup half full when he talks to me. I don't know how real that is but it's his way of talking to me about it all.

He's on my mind often... At the moment I'm thinking of him because I've hurt my index finger on my right hand. It's stopping me from doing some things, I am finding ways around it but my husband had to cut my dinner up, I ordered something I could eat with a fork only and I keep going to do stuff and pausing, finding a way around it.
I was asked why I didn't use my left hand, I reminded them that if I wanted to guarantee it would get in my mouth. I've been good at hiding my disability. Or have I been letting myself continue to be disabled?

It's just my finger. It is temporary.
For my dad, his whole body won't behave. VHL and the subsequent treatments have caused all this.
He had years and years of normal. (VHL normal)
I want even more years of normal. Proper normal.

He'll be 70 next year.
Lots of people don't get all those years.
My brother didn't.
My finger hurts.
13-30 the biggest gap for him

0 - 17

17 - 20

21- 34

34 - 36

36 - long gap please
I don't count the eye stuff
I think my numbers are right.

My 40th year

For those of us with VHL each year we make it to a birthday is a victory. We describe ourselves as warriors and so these victories each year matter, one step closer to winning the war.

It was less then 10 years ago that I received a letter telling me my life expectancy. 52. I have screening.
This wasn't a predictor of quality of life, just the years survived. My father will be 70 next year. He survives every day. I question how much he lives.

This my 40th is a big deal, 50 will be too. 53 is the year I intend on having the mother of all parties.

But more than that I fully intend to live my life. I intend to be, love, laugh, hold others.

Waiting

Grrr, I'm told the meeting is at the end of August.
I'm not feeling very patient