Fuck off to Disneyland.

My mum and I would wonder when I would get my...fuck off to Disneyland moment.

Your cancer needed to be terminal.

But we never really know. And it will come back, without doubt. So we realised, we don't get to cash in and fuck off to the life long dream.
Mine is not and never has been Disneyland. But it seemed the most popular choice.

Today, as I watched the clouds over lake Malawi and let the wind cover me in a smooth coolness on the boat that took us from island to island, and as I looked at my new friends and beautiful little family, I realised, I've done it!
I've had my 'life is too short' escape.
Malawi is my Disneyland.

2019 will have some surgery in it but I'm determined not to let it spoil this escape.

More rain

Well, it is the rainy season.
Unlike the refreshing power of the rain here, VHL comes time and time again. You know it will show up. When? You can make a good guess and that is... Too often.
I'm trying to enjoy this moment and having the never ending support from those I love, and love me is helping.
The rain that is beating down around us tonight is, according to the locals, unusual for this time of day.
The reocurrance of kidney cancer is frustratingly normal and yet it beats down.  Hard and unrelenting.

I love rain

The simplicity of it.
The truth of it.
The way it does its job
Well done rain.
I applaud you.
Job well done... Keep it up.

Well, stop for a bit while I enjoy a bit of sun, tomorrow will do.

You've cooled and nourished us, me.
I do like the rain.

Postmum Pat

Two letters arrive at my old, old, old, old, old, old address.
They contradict the emails I've had.
They send me into the state of the unknown again and they make the evening frustrating and I feel sad and confused.
I'm now back in the doubt and so despite feeling I knew what the plan was, it's changed or has it?

I have cancer

And it's one of the good ones.
In the last month I've heard of two men who have prostate cancer.
Oh, one of the good ones
Kidney cancer isn't normally considered one of the good ones, but if I'm being positive, it is for me.
One day I might run out of kidney. I might run out of both.
But not yet.

Phones on a wall

I remember the phones on the wall. It was a day in March. A month, that until then held no significant to me and will now forever be, the month.
I was aware that I should tell people. I was old enough to have people of my own to tell. I don't recall how I paid, but I stood against the wall, in amongst the wall of phones and called someone.
I told the person on the other end. He's brain dead they think. He's dead they think.
And I recall being aware of the momentous event and my place in it. Small and sad.
Nothing more then.
I was surrounded by people who were leaning against that wall of phones. Some with good news, some bad, some mundane.
All with someone to tell.
Today I have a wall of people. I lean against them when I need to tell someone.

It's always

It will always be there.
This doesn't go away and never will. Stoic and able to comfort those who need it.
It's fine
I get tumours
Shut them down
No sympathy required
Those that know a bit more, read it... I don't want to dwell
I can't
I can't
I can't
And when I do - who wants to listen?
Very few
And I included myself
I don't want to listen

You grow slowly

Tonight I'm out at St Andrew's night. An annual event here.
I saw people I haven't seen in a while.
'how are you?'
Very normal question.
Who ever really wants to hear the real answer?
This time I resisted the urge to say, oh I'm good. But I have cancer again.
And as the raffle unravels I am doing my best to be the woman I was this time last year.
But each time I know I've changed and my body has changed, not just older but more tumour. More surgery. More risk.
One day I'll run out of kidney.
But not yet.

I didn't win that raffle. 

I don't want to

I don't want to
I don't what to chase
I don't want to ask
I don't want to know
I don't want to stop
I don't want to carry on
I don't want to cope
I don't want to fall apart
I don't want to

I'm nothing special

Some days I just can't believe what I'm juggling in my head. And there are people here who see and know that.
But not my husband.
When asked,  do you think I'm impressive how I cope with all this, he replied
The doctors are.

But me?

I've blocked out the exact details but the gist was no.

No

No

And I didn't know what to do with that.

Did I show weakness by asking?

Is it that his permanent ex-pat lifestyle has left him devoid of understanding.

Or

Is he right

Nothing special about living with VHL.

How far can you go?

The surgeon has a knife.
How far should it go?

How often can you be cut and how many times will it hurt?

3 years hence

Facebook tells you about memories. I'm struck by where I was three years ago. I'm in Zomba today and I climbed and walked and saw things I never imagined I would.
I did it with new friends and my little family.
I'm troubled by the next phase but not thrown by it.
I will make it through and I have such a huge amount of love and support.
Today I am aware of how blessed I am, despite my next VHL hurdle.

Party tears

I do this, this is a thing I do. I cry at parties.
I, of course, do it discreetly.
I cry because the timing is good.
Drunk friends, drunk me

I let myself feel

I let myself cry

I move on

I cope

Epiphany

Lots of people around here like climbing mountains.
I don't.
I'm told you get a great sense of achievement once you get to the top. Then it's all been worth it.
I thought this was true but I've realised for me it's not achievement I feel.
It's relief, relief it's over and the easy bit is ahead of me.
That's why VHL is such a arsehole disease. There's always another mountain.

The news we're always waiting for.

This is a familiar feeling. I don't think it is ever different. The waiting and finding out.   

The news is:
Brain and spine stable.
 A lesion in the right kidney has grown from 13mm to 18mm and Prof D thinks it might need treatment and he is going to write to the renal team.

What's different this time as I've found out via a short email and now all my questions are left completely unanswered. Although if I had been there in person, Prof D would still have to ask the renal team.

Might need treatment.

When?

Please say, not for a long time.

Please say, maybe never.

Please don't say you need more scans.

Please don't say, soon.

Please don't end my current bubble of happy.

Holding back tears, letting them come. Fight the urge to tell everyone. I FUCKING HATE VHL. Fight the urge to get sympathy from all sources.

And into strategies, - if it's this then we'll do this. What's 18mm? How rapid is that growth? What was it last time? Which side?
We'll cope. It's fine. I'm fine. Should I tell my mum and dad before I know more? They'll only worry.
Cover it up so my daughter doesn't worry.

And then numb.

Dazed.

Tired.

More questions without answers, more guesses.

Sadness.

Fear.

Blog.

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

Self preservation

Wow, we're not quite back in Blantyre but we're in Malawi. The journey has been rather epic so far, but nothing you can't handle when you have two people who love you with you, and knowing that you walk with privilege and money and ways out.
I'm sitting feeling tired but calm, another year stretching ahead of me, one that I hope is as good as the last.
It's been a while since I've been able to say that.
The stresses and joys of England and being in that place I also call home have put into sharp focus the reasons we're not in a hurry to go back to the UK.
Here is different and that's what I need.
A friend mentioned that they understood the need to be away, self preservation they called it. I agree.