grumpy

I've woken up very grumpy. Perhaps a little too much wine bar night hasn't helped.

I'm grumpy at the washing up in the sink, the fact that the national power grid has gone off again, so the load of washing in the machine is now not going to be finished until the afternoon so it won't dry today.

I'm grumpy that some ex students on twitter have been rude about the school, when I know how hard the staff are working to keep us going and hopefully open in September.

I'm grumpy because our house keeper who we haven't seen for 4 weeks sent a message to say they can't afford to buy food. Even though we are still paying her, so I think maybe the other 2 members of staff who employ her might not be. 

And I'm grumpy because our tree house is broken.

And yet I know these are all such small things compared to what other people are going through and I feel like a spoilt brat. And that's making me even more grumpy. 

Holding onto you

I've been looking at photos from the past and trying to remember where I was in them.
The easy days I suppose, when you didn't think very much was significant.

I enjoy seeing how so many people look the same, I seem to always look the same, my face a little less round and my belly a little bit more round.

And a few minutes ago I saw a message on Twitter and it was a sign from a man on a ventilator - he'd written 'I'm not giving up' and I cried. I know that feeling and I know what it looks like to see it on someone you loves face. I also remember the time in that hospital bed when I told my mum I was giving in, I couldn't do it anymore. I couldn't try and more. I closed my eyes and told the universe I was done. My eyes were already closed and I thought that maybe that would mean the horror of what I was feeling might go away. It didn't and I endured. I kept feeling and I was saved.

I've wanted to give up so many times in my life, you're not human if you haven't. I am happy to give up in a Frisbee game and when I know my Yorkshire puddings have failed spectacularly. I've given up on thinking someone will love me, I've given up on people who have hurt me too much, although not often. I'm not giving up on much else. I almost gave up on teaching, I nearly left that but I'm so pleased and grateful I didn't.

So I'm not giving up on the idea that this school will survive this, that we will survive this. I'm not giving up on hope and life and I'll hold onto the knowledge that I am strong and so are those I love.

Tension is high

Navigating emotions when you're stressed and tense is hard.

I take cortisone replacement steroid because I had both my adrenal glands removed. I do have a tiny but that was left behind and over the years it has shown it can cope with quite a lot of stress.

We all have our ways of coping with stress.

I just realised I forgot to take my tablet this morning.

Done it now!

I realised because this morning I have been doing part of my job, that is helping the staff of our school through these difficult times, helping keep others in the loop, trying to balance need and emotion. And I felt my arms tingle. That is a sign that my cortisol levels are low.

And it's stress. The stress hormone.

I never even got to say goodbye

A cliche line from a film.

A regret.

A common reality.

And now, even more than the everyday. At least, it's now more public. 

I think about saying goodbye. I'm not sure if I'd want that. To be so certain and so sad and so final. 

I want the last moments between me and the ones I love to be much more of a see you later. Because even though I don't know what I believe to be the next phase of life. It shouldn't be goodbye, it's got to be see you later. 

Keep calm and carry on

I'm trying to control what I can, think of what I can control and not let myself dip into fear.
Some days it's harder than others.

All this, the world is aware of all the things they hold dear.

I'm keeping busy.

Online lessons, thinking of things my students can do from home and trying to balance the fun and keep the pressure low.

There is lots I can do, lots I will do.

I miss the teaching of actual children. My usual place of solace when I feel lost.

There has been a death of someone in our community and the tragedy of this can only be made good if it encourages everyone to be safer, take this all more seriously.

when you are isolated

It's clear that the world is never going to be the same. So many of us have now experienced, and continue to feel the acute anxiety that comes with such a huge amount of uncertainly.

As my family and friends are preparing for the inevitable lock down I am still struck by my previous experiences and how this fits in. I live with the fear and threat of VHL, right now one of my worries is the cancer in my kidneys and how it may or may not be growing and how I'll know. That thought sends a small tremor of worry through my gut. Frankly I don't know how I don't have IBS.

So often in my life I have held my worries silently in my head so as not to upset, freak out or annoy others. I have sat quietly and planned how I was going to survive the next moment. Most clearly were those three horrendous weeks lying in a hospital bed, most of it with my eyes closed and waiting for someone to say they might be able to tell me what was wrong and then waiting to see if someone was willing to fix me.

It's mostly just me and my thoughts and I don't bother many people with them, why would I, who would want to spread that. And then COVID 19 began to steal the security so many people feel, it has taken away the safety net of a comfortable life and exposed the fragility of life and I don't like seeing that worry and stress in others, in the people I love. And I want to stop them all. Protect them.
Keep busy, make sensible plans, distract yourself, look at the silver linings, be as positive as you can an cry when you need to, keep your chin up and remember:

everything passes, the good and the bad

COVID 19 and me

As far as I know, currently I don't have it.

Today the world suddenly seemed to get a taste of what a constant medical threat feels like. This virus is showing each part of the world how it feels to be unsure what the next few weeks, months and coming year has in store. 

Those of us who have lived with yearly results know this feeling. Frequently having bad news and not being sure about your health.

I'm nervous about what this new threat means. I'm worried for so many people, the ones I know and the millions I don't.

I'm disappointed by the disruption.

I'm also intrigued by the panic. 

I'm considering putting a few more tins in the cupboard.

My draw of UHT milk is full.

when your past sneaks in

I had what you could refer to as a re-laps. Nothing medical, all emotional.

I didn't know how to say, slow down, let me do this properly, this is my new place. Partly because I was so excited by the idea of it all, partly because I want that time to be made right. Even though in so many ways it was I wanted to share some of what wonder there is here.

And then there is was, someone here acting like someone there and my defences went up and my fear crept in and my worry spiked and I sat on the steps and tried not to cry, tried to fix everything. Got overwhelmed by the enormity of all of here and so I did what I always do - I got on with my day job. I retreated into work, even though this is all about work.

My strong and competent layer trying to stay there, and without knowing someone did it just the wrong way. I was right back at that oval table, eyes on me, answer, give details, and I felt the challenge and I knew I'd gone about it all wrong.

But I found solace in a friend and the compassion she has and the way she knows me and I cried more, let it out, said all the irrationality out loud and was able to take a step forward and as this occurred my guardian angel reached out and there too I could clam myself and know I could make the right choice, for the right reasons.

flying away

Today I've flown to South Africa. We're on a girly few days. 

New friends and adventures.

As the plane ascended I breathed a private sigh of relief. No nasty brain tumour. No headache, no symptoms.

I'm now me relaxed.

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.