I think I need you

Tonight...  I think I need you

Feminism finds itself trapped

Tonight I sat speaking to a woman who I have a peculiar respect for. She is woman who dances between power and weakness.
As with many of my encounters this exchange was about me.
But... We discussed and conversed. My step father in law demanded my glass, he flicked soap suds on me. I was mid conversation. Still he flicked. Still I refused to yield my glass. He was frustrated.
So was I.
I was faced with a man who expected subservience. He wasn't going to get it
Merry Christmas

Easier to be terminal

As I sit listening to the songs of Christmas eve I find myself envious of those who know their fate.  I have forever sat on the cusp of death and life. An uncomfortable place to spend your days. But sit here I do.
I'm loved. I rejoice in that.
I'm admired, I'm proud of that.
I'm independent, I rely on that.
I'm so close to an end. I assume that.

Christmas

Another one. My little girl is excited and that's the important bit. I think, all things considered though that Christmas just won't ever be as good as when I was little.  This proves how happy I was. I really was. My early childhood was the best. We weren't rich, we lived in a small home with a yard, we didn't eat the best things and I didn't have loads of friends but I remember being very happy. I loved my parents, I enjoyed school, my brother and sister provided me with a great balance of fun and fear and we had a great dog.
I was so very happy.
Memories of kicking the bunkbed above, playing and smiling, singing and celebrating.
Occasions like Christmas were all about anticipation and joy.  The routine of it all was so much of joy. Wanting something for so long and then getting it (or the closest version my parents could afford)
The tradition of stocking, church, sherry, gifts, food, playing, gifts and TV. Always that order, always great.
I don't have that any more.
I miss the traditional way and I know I'll never get it back.
As my always foretold... Everything passes.

A pretend friend

Recently I've been having a hard time at work. I've had to adjust my trust radar a few times.
I trust easily and 'over share' and that often means people think they know me very well. In turn they tell me things, I know a lot about people very quickly.
I'm thinking of all of this because there has been a new face at work, she posed as a friend but I get the feeling it was far from real. She used me.
I trusted, but now I am dumped.
I could be wrong, perhaps this is normal behaviour for her in friendships but it isn't for me.
Trouble is I could have done with a friend at work, someone who I could get support from. I've been struggling to be strong at work, to be in control, to care enough to be good at it. A friend might have helped a bit but she didn't.
Luckily I have a couple of people I can trust, and a few more who trust me. Can see the current me is weaker than normal and needs a bit of space.
More importantly I have real friends outside of work who are helping me get through this rough patch. Ones who check in, who keep me focused on what is important, who tell me their great news, medium news and bad so that I feel part of their lives and know I'm not alone.
I'm a mess inside. Work used to be my escape and it no longer is, well not all of it. Those great classes, who love to learn and we have fun together, they are an escape. In fact no matter how shitty things get, a great lesson can make those spirals of shame, fear and loneliness pause and retreat.
Her falseness is troubling me. I wish I could let go. I don't know why but I'm guessing it is connected to trust. To feeling used. It's all fine when you're needed.
My true friends are there no matter what.
I hope I am a true friend. Maybe that's what I'm troubled by; could I have been that false.
Yes. 

Letter to my little girl

I'm not sure if I've posted this before but I was tidying up my dropbox and came across the letter I wrote to her, to keep if the worst happened. 

I wrote it in 2013  - must have been the kidney one. 

It's here if she needs it... I really hope she doesn't. 

I'd have written this by hand but I'm not great at spelling and I want you to be able to read it.

You are the absolute best thing that ever happened in my life and you brought me joy in so many ways. I hope one day you know this joy, and then you'll understand. I want you to know that if I have any choice at all I will be with you and I will always love you, I am in your skin. I am so sorry that I left you and so much wanted to see you grown up.

I don't want to decide what your future should be and you shouldn't live your life wondering what would have made me proud. I hope that you are a good person of course and I hope you live well. I trust your dad to help guide you and keep you safe. There are a lot of other people who will be there to support him and make sure he does. He's a great man and the best dad I've ever known. Maybe you will end up looking after him. He deserves to be happy, he should have another relationship. So should you.

I can't decide if I should offer you words of wisdom. Will you treasure them? The problem is of course that I don't know what situations you may find yourself in and so advice could lead you the wrong way. But this is what I think… I hope that you trust yourself enough to make good choices and to be mature enough to resolve them if you don't. Learn from your mistakes, everyone makes them - try not to make the same one twice. Take some risks, don't play it too safe. Try hard, make an effort, most things that are worth anything in life will be hard work at times. Read a lot and read widely and don't believe everything you read or hear.

I hope you are both happy and that you remember me, but don't be too sad about it.

Baby girl I love you so much

I hope the diary shows you we had fun… we did. thank you for being you and being my squidge pants. 

Pride in my latest list

I got a letter in the post today, 5 months after my clinic and I got my VHL list through.
I love reading my list.
You might think that strange but for me it is a badge of honour. It represents my struggle and as today I read it, in my kitchen, busy rushing around to empty and immediately fill my dishwasher, make tea, clean the kitchen up a bit, put tissues in my school bag (I've run out as I have a cold) entertain my child and get her to bring her washing downstairs and put on a load, I read it and felt proud.
I'm proud of what I've recovered from and aware that some of the buggers on the list will need intervention one day.
Pleased, of course that only one of them has grown.
And I'm proud enough of it to share it... I think sometimes people forget how great I am! The lack of modesty in this prickles me slightly but it is true. I know some strong people, mainly women.
I want to raise a strong woman.
So I put a picture of my list on Facebook. I want people I know to see it and think, fuck me that's a lot of tumours. She's amazing.
Because I am a VHL warrior.
Hear me roar.

Depression

I'm not depressed today, I'm just really pissed off.
But I think I was, I think that the feeling of despair was one that took me over.
I think I was depressed because the joy of life doesn't last when you're depressed.

It's like sunshine on a cloudy day, you feel it but never enough to actually keep you warm.

The sadness that covers you, that creeps into each day.

And then I get really cold, that way you don't feel anything. I've just been lying here and knowing that I'm just not feeling. 

It's easier. It hurts less. It means I can move through each day. 

My husband loves me... I think he'll always be there if I need it want him. I really hope that that is true. 

And so tonight I don't want to sleep because I don't want tomorrow. 

The end of the world

Today Trump got in, it's frightening.
So much of what is what I hold dear... In danger

Flash backs

I wasn't sure if that's what was happening, but I think it must be. For most, flashbacks come from a traumatic event. Maybe there keep seeing the car crash or see the blood but my ones are of a time when I just couldn't see very much.
I flashback to the bed, the dull, the feeling of uncomfortable agony and hideous nausea, dizzy sick, useless horror.
And now I'm here... In this life that is completely fine.
But so often I want to scream at the world, fucking stop.
Stop and see...
Just stop with the trivial bollocksing shit you spew out info the world.

I don't of course, I tend to smile and ask if there is anything I can do.

Grrrr

Bout

https://scontent-lhr3-1.xx.fbcdn.net/t31.0-8/fr/cp0/e15/q65/14876544_1323289851035448_6522981114112102614_o.jpg?efg=eyJpIjoidCJ9

I hurt all the time

It's about finding ways to not feel it.
And when work was good and fun that helped.
When my child is happy, so am I.
When I'm distracted by brilliant friends, their unconditional love dulls the pain, some times a lot almost so much that I think I'm free.
There are other ways, jigsaws, flirting, roller derby, well the last one provides physical pain... My healthy form of self harm.
Sometimes I let drink do the work but it never works. I'm lucky it hasn't.
Work, work was the key and now that feels like shit too often.
Work was fun, hard, challenging and extremely rewarding. Frankly consecutive governments have been destroying all that and it's not just me that is feeling it.
So where as I could rely on my job to mask the pain I can't now.

Roller derby come back bout

Less than a year from my last brain surgery and nearly 3 and a half years after the first time I did it, I'm about to take part in my wreck league bout.

My skater name is Cortisol Crisis, in honour of my lack of adrenal glands and my number is 999, to reflect on the NHS.
It's been over three years because VHL keeps getting in the way. Kidney cancer first, so post surgery I wasn't allowed to skate and certainly not to scrimmage for over a year. Brain surgeons not do fussed, the skull and take more!

And I'm proud of myself.
I'm back.
I'm not as fit as three years ago but I think I'm a bit better at staying on my skates.

Dad's reawakening

The fact that he hasn't done anything for so long means that I find it truly amazing that he decided to do more.
And in true style he got on a boat and was hoisted up, wheelchair and all to the crows nest.
Yup
That's the most recent thing.
I've no idea what he'll get up next but for the first time in a long time I think I recognise my dad. The one I lost about 10 years ago.
He's not completely back... But he ain't dead either.

Angry with me...

It isn't easy to explain the importance of the anniversary of surgery, but in simple way it is like any anniversary, birth, death all.
It reminds you that time passes, that you've overcome something to be where you are, that the next year might be better. Anniversaries give you time to reflect.
I'm a bit depressed at the moment, I'm finding it hard to get out of my own head. That seems to be exacerbated by what I went through this time last year.
I'm sat with my child and today we have cuddled, talked, eaten together, gone for a walk and to the shops to get a treat. This time last year I couldn't move, open my eyes or eat without feeling so unpleasantly such and dizzy that I would rather someone would have been able to turn me off.
I didn't want to die, but I didn't want to be conscious. I was desperate for it to end, I felt so terrible that I couldn't stand any second, I was unable to sleep and I needed sedatives to even allow others to move bed.
The contrast is extraordinary.
I should be delighted.
And part of me is.
As she sits there now, both of us being quite normal I feel partly content and yet acutely aware of the potential of it all happening again.
I'm a survivor.

Taking responsibility

A number of people (I'm one of them) think I should get counselling.
My husband isn't sure. But I think that might be because of the experiences other people he loves have had. It doesn't trust it.

So why haven't I?
I nearly did, I had CBT before my brain surgery. I booked in meet a counsellor that I was willing to pay for, in July.
I pulled out.
CAMHS want us all to have family therapy. I'll be fine with that.

I don't want to do it because I'm afraid of what it will uncover. The truth that might come out. The reality of how I feel about so many things.
Like a leaking tap... I can manage the small drips, annoying as they are.  The occasional spill, but it's under control.
I don't feel strong enough to fix it, I don't know how to turn the water off first. And I'm not prepared for the mess, the inital dirt and sludge and more that I don't know if even there.
Drip drop drip.

My return

On Saturday I'm going to be in my second roller derby bout.
My first was some years ago, before kidney surgery and before brain surgery.
This time last year I was in hospital and I was so afraid. I didn't know who I was going to be. I thought my life was going to be an every day battle of misery.
I tired to focus on things that made me happy, I thought into happy times get me through the worst month of my life.
It was horrendous.
It was a month full of terror and fear.
It was.
Now I'm here...

Stages of grief

The stages of grief are well researched, it seems they are a common list that many people could concur, occur.
My brother has been dead for a very long time. What stage of grief am I in?
I'm also grieving for other relationships, one with my dad...
He's not dead but he's not here anymore, a zombie in fact.
Celebrating the joy we had, for the longest time I couldn't see the good.
Why do you think that is, is that the loving dead version of grief?

Shaking lettuce

As I stood over the sink, shaking off the excess water from the lettuce, I thought of my dad. It's how he did it, when he could. He was a great cook, we ate so well and despite the stories of hideous meals my mother would cook, I only ever really remember eating well. And the joy of saying, "my dad cooks our meals" and watching the surprised and often confused looks of those who didn't understand why my mum wasn't doing it.
My mum's cooking was, by all account terrible, but I suspect it was just very average and she didn't enjoy it, she still doesn't.
They struck a deal the two of them, there is a story to go with that too, about driving round the block multiple times, until she saw his car... first one in cooked.
Now I think of it there is the other story to dad's uptake of cooking... this one goes: He was so full of the intellectual he needed something to do, do with his hand. "cook the bloody dinner then" was my mother's response to his existential crisis. I love my mum for that.
We all did, me, my brother and sister don't know or care what the truth of the stories might be but we do know that dad loved cooking. Even though VHL has taken away his ability to do the finer work, he still tries to have a sense of it from time to time.
I suspect if he really put his mind to it there would be enough gadgets and ways for him to continue to cook, at least physical supports. Trouble is, are there emotional supports?
He would make great food and we didn't even realise just how lovely it was sometimes. On occasion we would have a takeaway, but the rest of the time he made delicious, nutritious food, meals. Often we'd get a starter.
He would watch food programmes, I loved Floyd, I still get nostalgic watching the greats. He would read cookery books and we would reap the benefits.
Often on a Saturday he would spend the whole day preparing for a dinner party, we'd search and search for the necessary ingredient. This treasure hunt was so much harder then, supermarkets didn't have aisles and sections dedicated to world food. Sometimes his hunt would take us to shops in alleyways with funny smells and people who didn't speak English. In a small coastal town in Norfolk this was the closest thing to multiculturalism I knew.  Our cupboards were full of ingredients that were used once or twice then they gradually made their way back to the back of the cupboard they had been banished to.
When I decide to be vegetarian, he took it in his stride, researched. Mine and his first taste of bulgar wheat. My vegetarianism didn't last long.
We ate a sumptuous Sunday lunch every week. When he was ill or had left us, my mum maintained this expectation. It felt wrong not to do it, the weekend routine was set in stone. The only break from this were holidays and visits to family. I think I've listed the specific of what went with what meat on here before. This too always the same.Once he put a lemon in a chicken instead of the stuffing he made. I felt angry, let down. It tasted wonderful, moist and suited the heat of the summers day, but I was still disappointed. That stuffing was the best you've ever known.

Today is Sunday. I've spent a huge amount of it working - I'm not feeling on top of my work. My husband is away, it's just me and the little one.
I'm making falafel, its something we do well as a family.
I'll go and finish it off soon and we'll eat... each Sunday is different for us. It's hard to muster up the energy to cook a Sunday roast when there are just three of you and one is vegetarian.
I need a guest or two to make it worth while...
those who know me and are reading this - if you've got this far ask for an invitation... I would love to try and make a stuffing  as good as my dad's for you.

I've got a headache you've got a brain tumour

A new colleague and potential friend, today uttered the phrase in my heading.
I'm an over sharer, well I share a lot but I'd hoped I'd never over done the disease card.
But she has heard a couple of the stories and today we laughed about this. Because yes, I have had a brain tumour, two in fact. Both removed.
I over share...
I share...
I don't shy away from the facts...
But those that really know me have seen the hard shell that I case myself in when I tell of the growths in my body. The dispassionate recount of my dead brother and the, "it will be fine, everything passes" I grew up saying and hearing. They aren't me sharing.
If you've sat with while I've wept, when I've felt alone and frightened, while I shook with anger, then I've shared with you.
Lots of people know the facts, very few know the truth.