new year, new hospital

I've done my best bet to avoid knowing what the inside of my local hospital looks like.

I found out today. 

I was very frightened by my symptoms. Completely aware that it could be caused by all sorts of things. Completely aware that one of those things could be a fast growing brain tumour.

Completely terrified by the dizziness that didn't subside. 

Completely? Reassured by the neurologist. 

It's an infection. A nasty one. But not a brain tumour.

My husband was scared too. His silence at my worried ramblings about scans and flights and insurance and 'oh god, I can't go through that again.' were met with understanding and patience. 

I know I have cancer

and I know it's there all the time, waiting and maybe growing.
I had a sudden flash of fear this week that my time may be up. I wanted to run home, book into my GP and say - you need to check. How much is there now.
If it were possible I'd want to know everyday, just what my body is up to; behind my back.
If it were as simple as stepping on some scales, I'd be obsessed, I'd do it time and time again, before bed and in the morning.
Let's hope it's never that easy.
I don't possess a set of scales.
I do possess cancer.
well, it possesses me.

To everything, turn, turn turn

I have space to think here and I do a lot of it. To drown it out when I want to sleep I listen to podcasts.
But sometimes it is good to think for a long time.

Life here allows me to think about what I value and time after time it floats back to being happy while feeling I'm contributing, making a difference.

I consume social media and follow the news. I'm struck by the juxtaposition of the joy and horror. Here it's full of the same but perhaps more stark. The special school I visited have almost nothing. They have a room and chairs. One table. A handful of pens. 3 exercise books. This is common here.
We can't change much here. But we have to do something. Spend money and make sure it reaches the people who need it. And give money.

So I feel like my life is extravagant and I feel more privileged than ever before. And I am happy but I could do more.

The unknown

One way I cope is to plan various outcomes to the unknown.

I think them through, who can help, who I'll be, what I need to organise.

I've lucky enough to have a pal who is happy to listen to these plans and she has the good grace and love to join in, to agree or suggest and today she even got excited by one of my random plans as it would mean we would be close to each other in this imagined future.

My plans don't involve me being dead. So far I've decided that I don't need a funeral plan, at the moment all of my plans are me surviving, because I will.

This life, this VHL life means you have these thought though. My daughter and I, while waiting for out karate lesson to start were discussing the possibility of her being a good kidney match, and she at her tender age is automatically willing to give me one of hers. And as she reminded me, she hates injections. I suspect very few people talk about organ donation, let alone to their own mother. I wonder if I'd accept it.

where anxiety lies

Back to work tomorrow and I am anxious. I always want the INSET to feel worthwhile, and I always start to slowly remember what I have to do in the term and how the list grows with each 'Happy New Year.'

I confessed to my husband last night that I was also worried about having grown more cancer or a new tumour, I'm finding it hard to shift that thought.
What is my back up plan?

Luckily for me I think it's a displacement and I'm not as worried as maybe I seem to be. He replied with a sensible question and we concluded I don't have any new symptoms so I should recognise it's probably more a worry about work, which I have more control over and whether I'm growing more bad things.

I'm lucky too that I have so many people who would help me and us if this life changes.

And so far I'm lucky that I have the NHS.

Each New Year I feel the same...

Although I'm being better at enjoying New Year. The resolutions seem futile... but I always think about the worst that might happen and try to shift it. I don't say it out loud very often.

Each year I hope I don't grow anything new or any of my current tumours stay put. 

This year I hope work gets better and we all remember the importance of the students and value our staff.

I am resolved to stay as positive as possible and not dwell on the potential risk of more kidney cancer diagnosed in July. That the growth is so slow I get to be checked in a years time.

That the niggling fear remains under control and I focus on now. 

my aunty

I got in from a meal on the top of a mountain and saw a message from my mum about my aunty. She doesn't have long. I cried, and the next morning heard she had died on Christmas Eve. My thoughts quickly floated to flights back and words left unsaid. They tripped into the fear I've had since the day I left, to someone I love leaving this earth while I'm so very far away I want to tell her what a wonderful person she was.

How she always showed me joy and positivity. She had her full share of tragedy but never once let that be a burden she imposed on others, not to my knowledge. She always laughed and smiled. Always hugged. My expectation of her is always one of joy and peace. She exuded an attitude of stepping forward, of today is this day. This is the right day. This is the only day you can rely on. I hope she knows what power that holds. What importance that gives, what an impression it leaves when you sometimes don't know what foot you should put first.  She was a matriarch of subtlety and I hope in my life I am able to show that strength.

I'll miss her greatly.

it was the night before...

1999.

I sat on a sofa with my sister in a room I knew well.

We were holding hands and contemplating the New Year. We sat in silence for quite some time. 

Time.

2000 was the year of my first craniotomy. We both knew what that might mean.

The night before 2020 is fast approaching and I am hoping it's a clear year.

For me and my family that means no operations, no deaths, no growth and nothing new.

Could we hope for a whole decade?

We always hope. 

I can see a million stars

It's almost the end of 2019.

Time keeps fighting me.

But here I am counting a million stars and knowing what joy is.

I'm one of the privileged million, billion or more.

I don't deserve it. But I am it.

Here and now, luckier than most of the planet.

What absolute bliss. Even the richest person on earth can't continuously feel this. 

The stars keep up with me tonight and if only time could stand still, just a little longer. Here and now.

Now.

Here.

The beginning of the end

For people like me, those of us with a preexisting medical condition the result of the general election was not only sad and disappointing, it was a moment of genuine fear.

We rely so heavily on the NHS and despite it straining at the seams and the waits, the delays and the under staffing, it is ours and it saves our lives.

It has saved my life in the big obvious ways and in the small ways too.

What will become of it now and then us... the first to go I suspect.

First they came for our boarders and I did nothing because I was a native
Then they came for our NHS and I did nothing because I was healthy
Then they came for our schools and I did nothing because I was confident in my children's success
Then they came for me there was nothing left to take

End of term and time for family

It is going to be a relaxing break, we have plans to wander and roam and I know we are going to rejuvenate and cherish this time.

Our Christmas tree is up and presents sit happily underneath.

Avoiding Facebook

My country is about to make a big decision and potentially so is my place of work.
I made a decision to temporarily stop following brain tumour, cancer survivors and VHL things on Facebook.

I hit the snooze for 30 days. 

I have too much in my head to think about that right now and I realised that I'm inundated with updates from strangers. Right now that's not healthy for me. I need a break.

I really need a break and in my small community that is hard to do.

If I could right now I'd go and spend a weekend at my mum and dad's. I'd go alone and I'd enjoy the solitude of the drive and the initial pampering from my mum and then I'd also enjoy the inevitable reality of their lives. Of course that wouldn't be escaping VHL, there in the adapted house that retains the memories of my childhood, despite the new room for my dad and the wheel chairs and scrapes, it would be my VHL. My story, the one that is most real to me.

Telling new people

As a teacher this is an annual event.
I don't gather any new students or staff around me and say... to understand me here's the list of scars and tumours, resected and remaining you should be aware of, but maybe I should.

Part of me thinks that no-one need ever know but there are stories, moments, medical wrist bands that signal a difference, and recently it's been the mental health side of my journey that has been most valid to express. Not least to acknowledge that I'm fine with my lot, today but there have been days where I wasn't.
It's a useful vulnerability as so many of us have the hidden battles and unseen scars of a life full of fear, anxiety, depression and stress. Seeing me strong and seeing me weaker is normal. I am a leader and I think there is so much importance in owning your faults, failures and struggles.
Here I am trying to do my best and sometimes I fall short and so do you. So let's try again together.

as luck would have it

Here I am. Alive and kicking.

Out with friends and coping with all the mundane reality 

My crainiverseary... 

Photos on your timeline

How many pictures do you have on your timeline in hospital?
Between me and my dad I have quite a few, the familiar lighting and flooring. The bed sheets and the scars.
I began to take a record when I took a picture of my dad's head before he was going in for more surgery.

For us both they tend to take away the scar that went before and replace it with a new one, a new part of our story.

What they take away belongs to us, a part of the process and journey and we're stronger for it., perhaps, yes in fact it is. My dad's body might not do what he wants it to do anymore but he's no less strong.

I am strong. 

when your confidence gets knocked

It's been a strange and difficult week at work. We've been inspected. 

I know I did everything I could during and I kept my integrity. I wasn't sure what that looked like in this context. Now I do.

It's been hard because I've seen others keep theirs and then one who hasn't. 

All this stress and emotion made me feel like I was disappearing into the fear of VHL. It's time like this when my resilience drops and I worry.

Pins and needles in both arms, light headed and tired. 

It isn't over but I can get up in the morning. 

Recovery is a long road

I don't have post traumatic stress disorder, I do however flash back to those days in hospital and the overwhelming fear of being there again.
Recovery of the body is slow and not always complete and recovery of the mind is even slower and I'm sure never complete.
I am doing fine, I am happy most of the time and I can keep the enemy at bay with a mix of love family, friends and a whole lot of work. I enjoy worrying about work and how to improve the school I work in. I enjoy pondering what thing I can potentially fix or change so that the students in our care have a slightly better experience. In the grand scheme of things I wonder if I make much of s difference, but I make some and on days like today, that's enough.
I am there for people, I like that too. I suspect I've missed some signs and missed a few cries for help, but generally I think I do ok at that too.
I enjoyed being a coach the other day, I enjoyed saying yes to a worry and easing someones mind. I enjoy knowing I'm part of this world.
I let all this take the place of the small and persistent voice that reminds me of how my body could change all that and how easily my life could become a long and drawn out experience of asking for help, request and demands. Like my dad. Although over time he does some of those smaller things, it takes him so much energy to write a short email.
I hope he knows that when he reaches out it matters to me

I think I'll tell him.

70 today

My dad turned 70 today.
This is somewhat of a medical miracle.
I wonder often how he feels about the life he has now and the life he used to have.
At 70.
Did he expect to last this long?
To my fellow VHLers someone getting to 70 is important, is an achievement and something we think gives us hope. But I know how hard everyday must be, how difficult the routine and not just for him, but all of us.

Especially my mum. 

When someone else is ill...

My husband is unwell, I know this must be, because he has taken to bed and despite trying, he has had to stay in bed for two days.

I'm quite good at being there for him, well, I'm here and I check on him.

He keeps apologising.

He needs to rest, his illness is a virus, the Dr says the cure is rest.

He is dizzy - I thought, brain tumour.

He said I had it worse, I did.

He better get better.

Coping and worrying

I keep it in check, but I am a worrier. Having am almost teenage daughter helps me focused. My mum, with the bet of intentions told me many of her worries, I could see it on her face and I think I was trained to worry.
I don't want my daughter to worry like I do, but perhaps it's a genetic flaw I have passed on.

I hadn't realised how worried I was about my husband until I saw him starting to get better. He is recovering and I've cautioned him not to move too fast. I could do with him being well, but he isn't and I'm getting on with that, Happily, here our community or neighbours and friends make it so much easier to cope. Little things like a tin of beans after a long day and the comfort of a cup or tea and a chat.

But worried I was, I don't like seeing my strong man unable to get up.

It's made him remember, or recognise how horrible it must have been for me. Not that he ever doubted it, but until you've been dizzy for more than a few hours, you can't really understand. He knows how much worse it was for me, he was the helpless one, sitting by  my hospital bed, trying not to show it on his face in the first few days, then no longer having to hide it as I wouldn't open my eyes. I could sometimes hear the catch in hos voice when he was encouraging me to eat or convince me to have a scan I couldn't face.