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.