I'm angry now

It's the summer and, as I've mentioned time to relax, heal. But I'm just a bit too angry. I'm cross with the year I've had and I'm not sure how to get over it.
I chickened out of a counselling session I had arranged. Partly because I was an idiot and booked it on the day of my daughter's birthday, but also because I wasn't ready. I still had some days left at work. I figured it would weaken me. I didn't have time for that.
So I told myself I would not work for a few days and relax, do very little. I have done just that and I find myself angry.
I'm angry that I didn't have the year I wanted and it's mainly  (not entirely) VHL's fault.
I've had time and space but the draw of work email dragged me back in. Each time I've looked, I've felt angry again.
Other people are very self centred, as am I.
I think I need a total detox of social media and email. I need a proper break. I need to break from the whole universe.

Despite being almost half way through the break I'm still angry.

Settling into normality

The all clear and the end of term. There will be lots of not doing much, seeing if I can heal mentally and do a bit of working on the physical.

https://vhl.org/about/resources/vhl-facts/

A sad day

My uncle died yesterday... he had cancer. Nothing to do with VHL. It's very sad. Cancer gets there, doesn't it.

All checked up and burden free

Dad and I had our annual review and phew, no surgery planned for this year. I know that this might change. Last year taught me that the very unexpected can happen with VHL, but hopefully this year will be OK.

HAPPY

https://scontent-lhr3-1.xx.fbcdn.net/v/t34.0-12/fr/cp0/e15/q65/13342287_10209732071367443_335868103_n.jpg?efg=eyJpIjoidCJ9&oh=e05112f52f48e9c182d59881df6e8f2f&oe=575707CC

Relaxing

A year ago I had a week off and still felt like shit. 

This time I had enough energy to get home and go skating
Times, they are a changing

Climbing Snowdon

My dad just text me to ask if I'll climb Snowdon with him. I said yes straight away.
The logistics will need sorting
For example how the hell do you get a wheelchair up Snowdon?
How many days will it take, considering he goes to the loo at least once every hour and stays there for ever.
When and where does he intend to nap?

What if we get stuck...
But I'm saying yes because he's my dad
He did it when he was much younger, healthier and stronger. He did it with my brother.
More importantly, though is that it means he's living. He's doing something to add value to his life.
I feel proud of him right now and I haven't really felt that for a while.

Why worry?

People worry about me. I've heard it a lot, more so recently. I worry me.
Should this disease have more of an effect on who I am? Perhaps it is, I go back to my love of drama, the drama of life.
This week I cried in my office. A friendly face offered help, advice and a much needed ear. He beard me say, 'why can't I just have a bit of boredom in my life.' I meant it at the time, but actually the truth is I don't think I do.
Facebook provides me with the outlet to get attention, I like attention. So when I post something I want lots of likes and things. I'm not sure I want people to worry and this happened. I was unclear and I worried people. I didn't mean for that, but they worried all the same.
The attention I want is about how great people think I am. Because, well like everyone, I'm not at all convinced I am, great. I'm not sure I'm good.

Negative bucket list

At the pub, with my favourite colleagues, I was amused by the way the conversation went.
I'm aware that when someone names a generally shite experience, I've nearly always got a personal example or a very close, 'my sister 'my mum' moment. So as we joked about it, she said she would write my list. 'Is there anything you'd haven't experienced?' she laughed...
'Skiing' I replied.
It got me thinking though, my house hasn't been burnt down or flooded. I'm devoid of most natural disasters.
But actually I crave experience. Big ones, life changing ones. I don't think you can have my life and not. I think it's  OK to have a very long negative bucket list.
There are things I know I never want on it: things my parents and sister have had. And we carry on.

Today I am strong. 

Today I cope and live. 

Today I know that a chapter has started to close and yet, the book is nowhere near finished.

Another appointment

They roll around, appointments but this time my anxiety levels are peaking.
This time my spine, this time I'm nervous of the hidden.
I don't want more surgery, I don't want to take more steroids. I want a normal body.

When are you fully recovered?

This week has been a test for me in terms of my inner strength and ability to cope. And today I'm knackered... Do I suck it up and go to the theatre with my father in law and daughter or do I listen to my body and sleep.
I can't decide.
It was full on at work, I had to do something that wasn't nice. I had to tell people that might lose their jobs.
I'm so very tired.

Decided

I had an email today saying that although I had leadership potential I'm not on the course.
I was relieved.
I was hoping that would be the case as this holiday I've spent more time thinking about what's important to me and my family.
Having that time showed me one thing was time.
The other reason I'm glad is that quite a few people I respect, do not respect the organisation. One, very newly made influence, my coach almost told me she had no respect for them at all.

I haven't had any feedback. I suspect it's my lack of ability in the 3 online, timed tests. These were types of IQ tests. I nearly always fail those.

It could be that my style, my philosophy of education came over too strongly and I'm not their type.

Could be I'd only just got back after sick leave and they could sense how warn out was.

Maybe a combination.

But whatever the reasons I am glad. Now I get some time.

Let the fates decide

It's holiday time... I'm on holiday at the in-laws.
All very pleasant and relaxing.
I'm happy not to be at work and to be healthy at the same time. It feels like a long time since I've been well and now I'm here I'm having a bit of a re-think about my next few years.
VHL put me into a place where I was clear I didn't want to miss any life. My brother dying and his eulogy made me very determined to ensure I lived my life and didn't turn any opportunities down. Mostly that's always worked for me but lately I'm wondering if I've got the balance wrong.
That's probably got more to do with other life experiences and a freakish cyst around my brain tumour. I've said it before but I lay there, day after day, suffering in ways I can't describe and I didn't feel I regretted any choices I'd made.
I wasn't proud of everything I'd done, but I didn't regret it.
After being back at work and being back to my normal self I've been struck by how much I've let work consume me. People have seen my stress. I wonder if much of it is because they expect me not to be coping, that it is natural to be stressed. But truth be told I feel like there are other things I enjoy that I'm not getting the chance to do.
I love my job, I want to love it like I used to. That might mean taking a step back.
I'll let the fates decide... If I get on the course I'll do it. If I don't I'm not going to worry about it.
If I don't though, I'm going to have to get better at saying no.
If I'm guilty of being weak, then it's at saying no. I'm full.
Life work balance.

I am drunk

Tonight I went out with my skating peeps. I considered friends as a label but it isn't quite right.
It's tomorrow already and I'm tipsy to say I  the least.
I nearly got on the wrong bus... I am clearly enough aware of my necessary journey to not do that.
What made the night VHL related was the number of times I and others mentioned my brain tumour. It felt partially heroic.

I was the only one (except a disgraced) from my original fresh meat. 
I survived.
I did it.
I won.

Breaks my heart

I'm home for Easter, just a couple of days. We had lunch today, the youngest of the family, my husband and I put the food out. So far so ordinary. My dad wheeled to the table and a plastic apron placed around him.
I served him food, cut up the bits that weren't already bite sized and sat next to him. A small gesture of understanding but I'd made sure today my mum wasn't sat next to him. I did the subtle catching of the fallen large bits of food. Then at dessert he couldn't feed himself. I helped, I carefully put the spoon in his mouth and helped him finish his meal.
He then had his coffee, then he went to the loo, all on his own. This time.

My once strong and independent father tries now to be independent, just a bit. 

And each time it breaks my heart, I see my mother's face look exacerbated by the crashes into walls and dents in the furniture. I see how trapped they both are and I want to free them both. But I also don't want to be here often. I'm weak that way.
I see it as one of my possible futures. I notice my arm all the more, I think to the day I need to be fed and use a chair and wear a nappy. I think of my husband feeling trapped by me and wishing he'd taken a different path. Who knows, he might still. There's time!

Feeling a bit sick

I don't feel 100% today, end of term and a few too many the night before last, my little one has had a fever. So this feeling is completely normal but I'm having a mild freak out. I feel dizzy, it's a feeling I now associate with the month of horror, the time in my life when I was so completely afraid that was all I was ever going to feel again.

I've done a whole term at school, cried, been near to tears a great deal and who could blame me? I don't know how I feel about everything but I do know that, not for the first time, the fear of VHL is getting in my way more than I'd like it to.

"amazed at how well you've dealt with it" I know loads of people think I'm great because I've bounced back. "I have nothing but admiration for you on how you've come back" and the more honest one "I'm not sure you're coping" even though I got in every single day and haven't quite dropped any balls just not been juggling them with style and grace.

They feel sorry for me don't they... that's the truth and so in a way I'm never going to know what a none VHL me is capable of. And as there will never be a non-VHL version of me perhaps I just have to get used to that. Grrr. I wish I knew if anything I do is good enough, I know I'm not good enough for me. There's the real pressure.

So it's Easter Saturday, I've sent some bits and pieces for work already and done some rehearsal for a play I'm in tonight, I've watched TV, I've had a long bath, I've loved my daughter, I've been made food my my husband and now I'm blogging. I'm trying to clear my head. It isn't working yet. I'm still feeling very unsettled and I think  it might be because my husband comes home with me tomorrow and I'm nervous. For my life to go back to the pre-brain tumour normal, that has to work.

On top of all of this the bugging sensation that some people are always right and in my sense of urgency to move on with life perhaps I'm in too much of a hurry. Give a girl a deadline of 52 and then scare the shit out of her at 37 and give her constant reminders of the limitations of the NHS and you will end up making her move too fast, do too much and live a life that would have been different.
As clear as that is, and as much as that 'makes sense' to those not in the know, I know I bounce from tragedy to crisis to emergency to the hideous truth of everyday, I haven't got time to slow down and reflect and think and value me.

What do I actually want from life...

Time and a diary

I write a diary to my daughter. I started it when I was told I had kidney cancer and that the operation was a difficult one. A nurse suggested I prepare, just in case.
I survived that and the next operation too. I write to her about her, how she is in my life and what we share.
I sometimes offer words of wisdom, but mostly I say how I feel and what we've been up to.
Recently the times in between writing it have become bigger, over a week, almost two. This isn't because I'm doing lots with her but that I'm busy with work, busy with things other than her.
I need to address that, I need to think about my family more and spend more b time making some memories.
She likes memories, she starts many a conversation with "do you remember when..." I dying know if that's normal for an eight year old but that's all life really is, making memories. Thing is, you have to do stuff to make them.
This Easter I intend to make a few fun, happy memories.

The difficult week

This week every year is hard, the hump in the road that I know I have to get over.
It was even harder this year, I woke up on the 15th knowing it already hurt. I warned a colleague and cried on way to work. I got through the first couple of hours. Then I cried again, I sucked it up and got through another 2 and then I couldn't quite do it. A word of kindness at just the wrong moment and I was gone and for the rest of the day the tears fell.
They fell while I did my job, only in the cover lesson did I just about hold on. I cried watching my daughter swim. I cried silently while we drove home. I cried while I cooked dinner. I cried answering emails, I cried myself to sleep.
I cried because I miss my brother so much, I cried because I was relieved, I was sad, I felt alone, I felt loved and rejected. I cried for all these reasons and some more besides.

I cried because I couldn't have what I wanted.

Grief took me over for that day, and I let it because I was allowed on that day.

I need another day where I'm allowed to do that. I may have to wait until next year now.

I thought I had a lot to say

Have I really been changed or am I simply already back as I have always been?
What makes me happy, should I be striving for that or are we all better off if we strive for a simple contentment. A friend.

I know my life hits some extremes for 'normal' people and I haven't chosen that but after all this time and all the stuff I am so stupidly used to it all, that an ordinary life feels so mundane.
I need to feel happy. Some days I do, some days I don't, I suspect that is what is normal.

I don't know if I'd be different if I didn't have VHL. Would you?