I'm struck by how much of my past impacts on now. I'm so desperate at times.
So sad in others.
I find myself angry very often.
Near to tears the next.
Thursday, June 22, 2017
Monday, June 12, 2017
This years clinic was a good one. Perhaps the almost the best I could have hoped for.
Two new tiddlers in my pancreas. So far untouched but now they add to my list.
I'm fit for work.
My father needs gamma knife.
I did the usual optimistic posts and messages.
But it's the hidden fear that it evoked, more, my list grows, more, two new ones to watch, more, worry, more, more, more.
Each hiccup, each twinge, each sensation reminds me... Life limiting.
Wednesday, May 31, 2017
And it being just the three of them it was bound to be a good day.
The VHL clinic went well. A couple of new tiddlers in my pancreas but no action required. Dad is likely to have gamma knife on a brain tumour but that's a caution thing.
And this means we can go, we can go on our adventure.
Dad doesn't need me in the country for gamma knife. That's one of the easy ones.
Thursday, May 18, 2017
Friday, May 12, 2017
Thursday, May 11, 2017
Annual MRI. This year it means so much, so many years it does but this time our dream relies on this being 'normal' for me.
No growth and no new ones please.
And if there are any changes they are very much... We'll keep an eye on that.
My coach used the phrase 'life limiting'
Am I puzzled by this.
I'm in the hospital now.
Tuesday, May 02, 2017
Saturday, April 22, 2017
Recently I went with my daughter and a friend to Go Ape. I hadn't considered I'd be afraid but as we moved onto the first off ground activity I was filled by with trepidation... The rope ladder.
I've had anxious dreams of these, clinging on swinging and afraid.
As I was suddenly faced with this reality I gritted my teeth and climbed. Not as bad as the dream but unpleasant. I did it for my child and told myself each run, I don't like this. I don't have to do this, I'm not going to keep doing this.
I did, of course and I climbed the next 8.
The reward was experiencing something special with my child and the zip wire at the end of each section.
This week I've had a similar experience of this trip. Elements of it have been less than fun.
It's made me realise how much I like to do these things with people, with my family.
Thursday, April 20, 2017
A number of firsts for me over the last 24 hours.
- flying on my own
- riding in a golf cart
- watching men play golf while sipping lemonade
- being in a Country Club
None of this would be happening if I'd even been 10% more content at work. If life hadn't gradually started to make me feel sad, most of the time.
Saturday, April 15, 2017
I met her at 6th form college and she noticed me, made me feel like I belonged. We spent hours together and we laughed, cried and more. We knew each other when we lost our virginity. She was the first person I called when my brother died.
I hated the fact that she didn't come and that I needed her.
For many years, when offering advice to the youth I have the privilege to work with, I say...
Be the change you want to see in the world.
It is profound and useful advice and I should follow it myself. And it starts with your self
that's advice one of the people I trust the most in the world often gives me and others.
We, us as a family, me we're going somewhere new.
I've chosen change...
So far it is keeping me going and the exciting possibilities of a different chapter are making each day liveable. It's taking me to Kenya next week, for three days. It feels terrifyingly amazing.
I think though I know which school I want... of the possibilities and the choices I don't have one yet. That part of fate is still someone else's choice. But one of them will make it, maybe more than one and then, oh how much I hope that it is one that leads to years of happiness.
Could I ever live a mundane life?
Saturday, March 25, 2017
Saturday, March 18, 2017
It is that time of year. The memory of the years without him. Grief is often the empty gaps.
Self made grief is a hiddeous self harm.
And now I need to stop that.
I'm quitting work.
I'm stopping the self harm.
I feel so much better knowing I'm going. To the point where I'm sleeping better and I'm enjoying my free time.
I'm smiling and I'm not falling apart.
I haven't cried as much this week.
Saturday, March 11, 2017
I went to the GP and was prescribed happy pills. They have not made me happy. I was sick most of the night, didn't sleep and felt more anxious than ever.
So that isn't the way.
I'm feeling rather lost now.
I don't know what to do. 4 months left at work. I can do that.
Tuesday, March 07, 2017
The day consisted of, morning fast, lying down, bloods, lying, more bloods, tablets and lying down, bloods, food, bloods, bloods, bloods and one more blood and home.
I filled the time and watched dreadful day time TV and doing a bit of work, some reading and podcast listening.
Because dad and I are regulars the staff asked after him and we talked about me a my last stay.
The smells made me think of last time I stayed there, almost 2 weeks maybe that long.
The staff, they have cleaned away my shit and sick and wee. They have seen me at my worst.
On the way home I saw lots of posters saying 'Wear a Hat' day. It caught my eye.
What's that for I thought, then I spotted the corner.
Brain tumour awareness.
Oooh, I thought, we could wear a hat at my school.
Oh no, I thought, that's too self centered
How sad, I thought, no one will do it for me.
Saturday, March 04, 2017
In so many ways.
I feel very broken right now.
My little girl keeps me sane but so much else is pulling me apart.
A podcast I listen to has people openly talking about the darkness and shame wells. All comedy. All true.
I feel guilt physically, even when I haven't done anything wrong. And if I have it feels like it consumes me. I so want to do everything right. Get it all right so that I never get in trouble. That I'll have nothing to confess. No sin and then no punishment.
My adult a logical self knows that the bad things happen anyway. But my inner child is absolutely convinced that I can control it. By being good.
And yet I make mistakes and I sometimes almost choose to do the wrong thing and even actively choose to sin. Tell lies. I tell many lies. I lie and lie and lie and yet I am very truthful. Overly truthful, I over share. I talk about myself a lot. Often. I crave that to.
Today I don't like myself.
Today I am going to try to value myself.
Even though today I can't understand why anyone would love me.
Today I feel like a failure.
But I'm able to fight, a bit.
If I didn't give up when I was lying in my hospital bed then I won't give up now.
Friday, March 03, 2017
Friday, February 24, 2017
I took the day off. The next day, after not much sleep I went in. That was yesterday. I didn't feel great but...
That morning I began to worry, really worry. The thought of this being the start another bad tumour experience started to seep in more than I had let it.
Possibility 1 - new super fast growing brain tumour with cyst
Possibility 2 - kidney cancer. ( I checked website symptoms)
Possibility 3 - my spine tumours have grown and disrupted the signals and stuff and...
Possibility 4 - one of my other tumours has grown, bled, metastasised
Symptoms and causes for my concern are:
Feel bit hot but then cold
Dizzy when I stand
Pins and needles in both arms a couple of times
Very achey back, particularly left kidney side
Not all, all of the time!
Ask scans to be booked a bit early
Get bloods done in next few weeks
Go to work anyway
Lie on the sofa watching TV upon return
Early to bed
Wednesday, February 22, 2017
I'm taking the day off work... I don't really do that sort of thing.
The last time I gave in and took a day off I didn't return to work for 3+ months.
This time it's normal poorly (I hope) and I'm going to see if a day a home not doing much helps me feel better.
I've felt ill for 4 days and still been to work but every night I feel rotten and so...
I'm quite proud of myself.
Putting myself first and not the job. And it is a job. An important one but a job and I'm important for reasons that are bigger than that. And everyone can cope just fine without me. They did for months before.
So I'm taking a sofa day and I'm going to look after myself.
Like normal people do.
Sunday, February 19, 2017
We're away, it's better than I thought it was going to be.
It's given me some much needed brain space. A chance to switch off from everything, for hours at a time. Not completely but enough.
I climbed at home too, I saw a psychotherapist. It took most of the session just to fill him on the basics of VHL. He said it was striking how much of my life it has been in. He didn't get the chance to ask much else.
I'm not sure how I feel about it all.
I'll climb a bit higher a see how I get on.
Wednesday, February 08, 2017
Saturday, February 04, 2017
Sunday, January 29, 2017
I advocate for good mental health at work. My school has won awards but I remain afraid to speak freely of my struggles at school.
Partly because I know there are people who use 'stress' as an excuse and they make it so hard for the rest of us.
What is true mental good health?
So often I'm asked how health is, most people are only referring to VHL. How many of us suffer with pain in the mind.
We VHL warriors speak of life expectancy and the next operation. We arm ourselves with knowledge to try and fend off the growing fear.
A good woman told me she is only evangelical about pilates and mental health. Yet I don't feel it's something everyone sees as important.
Despite the positive changes in its depiction in society today we still have such a long way to go.
Proof of this is that one strong advocate of counselling asked me to keep her own battle with anxiety a secret. I will if course.
I'm pondering this because of the irony that I'm speaking to Governors about staff well-being.
The truth is that it isn't our school alone that's making teachers sad, lonely, depressed, anxious and stressed. It's our government and the hideous climate of fear surrounding all.
There are no places to escape.