Thursday, September 20, 2018

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.

Wednesday, September 05, 2018

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.

Thursday, August 23, 2018

Life is a long game, if your (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.

Saturday, August 18, 2018

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.

Wednesday, August 15, 2018

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.

Thursday, August 09, 2018

Waiting

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

Sunday, July 29, 2018

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.

Tuesday, July 24, 2018

I dreamt of a spreadsheet

In my subconscious I'm getting impatient. Last night my dreams were about getting results and a fictional spreadsheet of my tumours and their growth was created.
It's not a bad idea.
I think it comes from explaining to my daughter what they do if something is growing.
They plot it, monitor it and we see.
I might make my own spreadsheet.
In one of my dreams I went to my old house. It was full of students and they were painting bits of it yellow.
Then my Dr told me the cancer was only growing slowly.
"That one?" I asked pointing at my left kidney. He confirmed.
And I knew that was that.

Sunday, July 22, 2018

Sister

I knew coming home to Norfolk would be the hardest bit of the return trip.
I don't feel like I belong sometimes but I fit here. The place of my childhood, pointing small things and places out to my daughter.
Yesterday, fuelled by drink and sun my sister did what I knew she would... She let me know that she's angry with me, she cried, I cried, she shouted at me and found blame in me, my mum, my dad, herself. The Catholic way of dealing with whatever it is.
She shouted that I was so self centered. Recognised that she thinks It's not my fault, that that's the way I was brought up, after my brother died. And in many ways I agree, she's right, I am. I do things for me. I choose life, I choose experience. She realises too that I'm expected to live two lives, mine and my brothers, and she feels she has to stay here and be the one with mum and dad. My mum was so worried. She hates it when my sister is angry with her. My poor mum.
I could go into more detail but I think it's ok for now, until I do something else (or don't)
And in amongst all that my dad needed attention.
I'm too tired to explain it all.

Friday, July 20, 2018

Love and hate

I went to a Pilates class yesterday, the day before I felt poorly, in the class I felt oddly young and old at the same time. The women doing the class were mostly over the age of 65.
I wobbled a lot but was able to do it all. The instructor, who was very good, tweaked me as we went along. I learnt from her I don't center myself, I can adjust this to help my posture.
My body matters to me, like many woman (and men) I spend too much time worrying about what it looks like. Possibly unlike others I spend a lot of time worrying about what's going on inside it too.
This period between scan and results is so hard. This is my annual highest level of ongoing stress. Prof Chew once suggested tablets to get through this bit. I didn't say yes, I manage through distraction.
'how's your health?'
Common question. I'm glad people ask, I'm glad they know it's an issue, but I wish they would remember that I'll pretend to be fine and brush it off with 'no news is good news' or something like that. But I hate this time.
This time is also the first time I'm not going to be here to talk through the results. What if they are complicated? How many of these versions can be, oh this is 2mm bigger, but it's fine, this is new but a growth, this is the same, oh did we mention the other 8 tumours. They're basically fine. Any questions? Because they tend to be the best case scenario meetings. What's that going to feel like in a letter or email. I'm going to freak if they suggest Skype.
And how do I negotiate worse news?

And right now that would be...

We would suggest bi-annual scans

or

You have a new brain tumour, brain stem, inoperable... Gammer knife

or

Kidney cancer

or

Something I haven't yet realised is shit

And I catch my face in the side mirror in a changing room and I feel I look sad, the clothes I'm trying on just don't make me look good and I give up. Just for a few minutes. I relent and feel utterly depressed. I regret everything. I wish everything I have chosen is different.

Then I snap back, I go and look for school skirts for my little girl and wander back to the other shop to meet my in-laws and carry on.

Sunday, July 15, 2018

My London

I'm in my London. My London smells, it's crowded and busy, it's got lots of people, it's got fashion and noise. It's got money, poverty. It's got tubes and buses and cabs. It's got cafes, restaurants, pubs and hospitals. It's got family and friends. It's got parks and schools.
It is my London and it's home.

My London knows me and looks after me. I have love all around me, the familiarity is like a blanket on a chilly night. It gives me confidence and freedom and I love it.

I had my scan, I spent that time thinking how lucky I am. My nurse made sure I had a scan. Not in my first hospital but my other one. I was asked the list of questions, I answered them confidently, reminded them of the contrasting fluid. I asked for a blanket.
The next day I went to my hospital for bloods and I was greeted in the ward by my first name. We caught up then too. We agreed the new health secretary looked like he was going to be a big a arse hole as the last one.
That bits now done.

Sunday, July 08, 2018

As we travel home

I've experienced a decent range of emotions about coming home. My time in Malawi is in no way over and it was a reluctant choice to travel back this long holiday.
Already the wealthy world is all around me as I sit enjoying 'free' WiFi in a luxury lounge we've paid for so we can feel more comfortable for the over night airport stay.
I'm drinking and reading and I'm relaxing.

Just a short while ago I was negotiating when to sort out the best time to wash, we juggle this around when Escom is giving us power or not.
I was only just leaving jobs for our house keeper.
I was just a teacher and now, now I think I'm a holiday maker.

Now I'm...
Going home to those I truly love and miss. Unable to fit them all in (humble brag.)
Going to my other heart, Tottenham and my old heart, Gorleston-on-sea. Leaving this new heart, the warm heart of Africa.

I'll have my scan. I'll wait to know, happily distracted by the sense of déjà vu I'll no doubt experience.

I'll tell the same stories over and over again.

And then I'll come back the way we've came and hope I still love it and still feel like I belong. 

Thursday, July 05, 2018

Ssshh, don't tell my mum

It turns out the medical insurance I had was not fit for purpose.
Having filled in the form for a much 'better' one, I'm still not insured in a way that makes me feel safe.
I'm covered for everything but my condition. So where does that leave me?
Still better off than almost every one I know with this shit burger of a disease.


Update:

Getting a slightly better deal. 


Sunday, July 01, 2018

The simple pleasures in life

This morning I am content and happy. I'm in bed, a lie in, reading, blogging and drinking a cup of tea that my husband just brought me. He's going to make pancakes.
My wonderful daughter is with her friend, they had a sleep over.
I'm going to drive up a mountain later and have lunch with my friend.

A wonderful friend back home just offered to do a beautifully kind thing.
I'm still not feeling the need to get up

If VHL has taught me anything it is to relish these moments. Notice them and be glad. I'm a privilege and lucky woman.

I travel back to the UK in a week. The buzz of London will fill my soul and no doubt I'll quickly re-ajust.

But I'm ready now. I need to stop worrying about it and be ready to enjoy that. How unbelievably lucky I am to even get to feel anxious about a return trip. I've had a word with myself and I'm going to look forward to it.

Saturday, June 23, 2018

Someone else...

My mum is due to have an operation. A full knee replacement.

I don't know much more at the moment but from my dad and sister it's clear that they are all feeling worried about it.

It's easy to forget that most people rarely need operations. So they are not ever routine.

It's not this that's making me feel anxious about going home. But I am. Life here feels normal. A colleague said to me yesterday 'you won't realise how much you've changed until you go home.'
I thought, I haven't changed. I'm the same.
She must have sensed that. We were sipping wine, she's been here over 5 years. They go 'home' every long holiday for the whole 7 weeks. She told me how she feels when they are staying in England.
Lots of her feelings were about materialism. The sheer volume of everything. The waste, the indulgence.
I'm wondering how I'll feel about all that.
I feel extremely privileged here. We have so much.
We talked and talked. Small stories that were so based on this life here in Malawi. It's going to be hard to help my family and friends back home to see it. The ones who have been will understand more.

I'll pack a bit more this weekend because we fly in a week. I'm nervous. 

Wednesday, June 20, 2018

Medical insurance

It's one of the reasons I've thought I couldn't ever be anywhere but the UK. Now I find myself filling in forms, my husband doing it most of the time. He remembers the facts. He likes those.
Cancer - tick
Brain tumour - tick
Cardiovascular - X
And on it goes

The ticks playing a game with the xs

On evenings like this I realise I'm living in my current bubble.

I like my current bubble.

Sunday, June 17, 2018

Saint

I was called a saint yesterday. It's because this weekend I'm looking after 4 children, I'm responsible for my pals 3 children.

I don't see it that way.

I look after 20+ every day. Every school day that is.

What's more important is that my new friends get to be together.

Together, it's an important thing.

Soon I'll be home, London, Rugby and Norfolk. And I'm still feeling mixed about it but it will mean I'll get some together time with people that matter.
And the craving to go to London is growing as I watch a TV show set there. I keep seeing bits of the London I know. I'm looking forward to being there.

Saturday, May 26, 2018

The mundane truth

I'm drinking wine, on my own. At university that was a no no. Now it's very normal.
I've had a very mundane day. And I've liked it. I've kissed my little girl and had lots of cuddles.
I'm watching Netflix and I'm a bit tipsy.
This is normal. Yes? 

Saturday, May 19, 2018

Things are different... I shall add as we go along

A question I hear in my head often is, why did we come here. The truth is always:  "many reasons."
Each one of those reasons would be enough and each of them is the only reason at some point.
Now we're here and in just a couple of months we'll be taking a trip home to Blighty and I suspect some of the reasons we could have stayed will make the following August a much harder trip.
But Africa, my piece of it is very interesting indeed.
There are many small things that make it different.
I intend on adding to this list.


The weather...
Watching out for stupid goats on the road
The crisps aren't very nice
We don't always have power
It's big
There are lots of holidays
No need for heating in the house
Selling live chickens on the road side
The creapy crawlies in and out of the house
Sitting in the sun most days
The colour of everything
Seasonal vegetables and fruits
Having to the malaria kits and treatment with you on trips
The lake
Solarising water
Seeing poverty
Newspapers
No NHS
the language
Price of gin
Clothes shopping
Carrying things on the head
No TV
Having staff

Dust

Babies on the back

The colour in August, spring

Fucking huge spiders and lots of them

Winter being cold

Mosquitoes

Wednesday, May 16, 2018

Poorly but fine

I've got a nasty cold. I'm in bed but I can't sleep. I have a temperature. But I'm kind of fine.
It's odd feeling ill somewhere very different. But easier to stay in bed as the pressure to get into work isn't any way near as accute as the UK.
I'll go and teach my year 7 but otherwise l will rest.
See if I can get any sleep.
My little girl was worried, it's hard for her. Her mum in bed brings back too many horrible memories. I can see the concern all over her face. Only thing to do is stay alive.
As obvious as this is to say, I do so hope I don't need any surgery for the foreseeable future. For her as much as me.

Friday, May 11, 2018

Each time I cough

I used to hiccup.
Now I cough.

Funny. Both involuntary one quaint the other a potential for germs.
However I now do the later more.
So hidden, my quaint disability. I'm struck that it's so survivable. Well at the very least I've surrvied. And so has my dad. Not my brother.
Today I took a step back into the path of a career I had been so very certain of. Without knowing it the growing number of hiccups meant I couldn't be who I assumed I would be in that role.
And now I am feeling that despite my ever lasting odd cough I'm more myself.

I feel like it's going to be a good few years. I hope VHL agrees.

Wednesday, May 09, 2018

What makes me happy?

On Monday I went to first Zumba class. Unlike my ridiculously fit and capable friend, who bounced the whole way through, I look it fairly easy.
As I shook and stepped and laughed at my lack of coordination, I was reminded of how different life could all have been. Of the brilliance of the human body to recover and cover up. Who would know my knee hurt. Who would know my arm tingled away. Who would have believed that the woman who lay in a bed for three weeks would now be grapevining her way across a school gym in Africa.
That I can laugh at myself and find joy.
I am finding the joy in life. My confidence is growing.
I am often happy.