Tears

My little one has her first day at her new school today. She was excited when she left but a little overwhelmed by it.
The reality of us being here hit her. I could tell she was bothered by it.
Eventually she let go and cried. Real tears. She misses the familiar and her friends.
I miss mine too, I miss knowing I'm close if I need them.

First proper day at my new job

To go from being in charge of so much, to now so little is strange and healthy. Yesterday I happily finished a meeting and went home, cooked, listened to my daughter read and had a relaxing early night. I've read books, done a bit of prep but just enough for now.

The internet is so slow there isn't really anything else to do.

It's surprising but the lack of stress and tension is the best part of this change.

There is some, but that's so much more about where we live and getting used to that, but once we are, well time will tell.

So today I go off to be a new member of staff, not in charge of anyone really. Just the students and I'm told they are a delight.

Freedom from the last year and a chance to start again. I'm privileged in so many ways.

Malawi

And here we are, a few stressful moments but 3 days in it feels good. Feels like the right choice. Live each day.
Some of the worries have dissipated and I feel happy.
Happy in a way I haven't for such a long time. Not the extravagant happy that I've felt. Not the guilty happy.
This is the happy I've missed. The soft curl in your mouth because a bit of you feels genuinely content. The base level of happy that keeps you safe and warm. The opposite of depression happy.
The no frills, comfortable happy that I took for granted, until I lost it.
It's a fragile happy still, is doesn't have it's strength back.
But if I nurture it, it will.

Saying goodbye for now to my dad

It's never comfortable for my dad to travel these days, it's hard for him to get about but he does it anyway, when he can and for a good reason.

He came here yesterday with his carer, made it up our steps, with help and we had the lunch I had made.

He told me he loved me, how proud he was of me and how sorry he was he had given me this disease.

He explained how he feels he is deteriorating still, that each time he gets ill, he doesn't fully recover.

He was saying goodbye.

Turning 39

It's another year and another achievement. Getting here.
According to that fateful letter I've got 13 years left.
Better make the most of them.

My birthday also showed me how loved I am and how I've learnt to keep amazing people close by.

I'm a lucky woman with an unlucky disease.

Dubious and misjudged?

Mental health is a fashionable topic, impact on stress, work related or otherwise.

In my last year at my last school I was told that some of my decisions were dubious and misguided.
Those actions, as far as I think they were referring to, were to be there for a friend who needed some unconditional love.

The accusation was thrown at me by someone who couldn't see the truth behind my actions. He saw them only as an attack on him. He's freely admitted he has trust issues. He told me he was angry with me. But hadn't sought out any facts just heard parts and jumped to conclusions.

This was months ago and it still makes me angry.

But a great sadness occurred, one of his closest friends committed suicide. I offered him my support, regardless of my feelings I knew he was in a bad place. He didn't take it. How could he. I know he'll have wondered if there was anything he could have done to change things. Perhaps given him the job we both went for. I know that crossed my mind. How he could have been a better friend. I wondered that too. Maybe if more people helped with stress at work, maybe, maybe. Change that culture? I bet he's thought of all those things.

What I hope is that all of these things mean the next time there is a chance of helping he does, the next time he listens well to the people who care.

The residue of pain

Term is over, and so to is my time at that school.
I left with a sadness and sense of defeat, I felt a bit lost and, although loved by so many, there were key staff who made me feel completely disposable.
While there I did so much, helped so many and because I didn't have quite the same vision, the same sense of urgency I was rejected. That's how I feel.
Three years.
I expected to be there so much longer, I felt part of their #family. Until I was clearly the black sheep.
Lessons I should try and learn, (but never seem to,)
1. don't rush back after surgery. For a while, people are impressed, but often, if your pain and disability aren't seen, then they don't exist for others.
2. Be careful who you trust
3. You're forgettable
4. Your leader needs to be morally aligned to you.

I'll grow from it.

Now I need to wash that away. Move on and be grateful that I could make the difference, I did.
Next adventure.

10 years of love

My little girl turns 10. She is my joy and my heart.
When people discover I have VHL and that it's genetic they often ask... And your daughter?
The relief I see in their face is sometimes overwhelming. 'I know' I say. 'I'm not sure if I'd be able to cope if she had it'
Or my other response 'we had her tested at 3 months, best day of my life knowing she didn't have it'
Which leaves me thinking how awful it must be to have children with it, and reminds me how awful it is to have it.

I'm bargaining with fate, asking for 2 years please, is that so much to ask. Two years of tumors control. I can't even ask for tumor free. That's not something I can ever hope for.
I'm a defect after all.
But if the universe could give me the next two years (four would be fabulous) to have an adventure, to treat myself and my family to a break from VHL, that would just smashing, thanks.
What will I give in return?

Forum or not to forum

To not feel alone, no one really is anymore but when you see others with the same disease with you share you know you're not alone.
But today (and others) it doesn't seem like a good plan.
I don't want to see the potential problems today. I'm fed up with the constant struggle I find myself in with the never ending fear of 'what next' what else can go wrong.
We're trying to escape...
I might silence those for a while to help me do a better job of pretending everything is fine.
All is fine.

A genetic defect

That's me
Flawed
At a cellular level
Moral too
Aren't we all
I fight an inner struggle that I imagine is familiar to all of us who have the privilege of wealth, comfort and time. I don't like myself. I don't like the way my body fucks me over.
I don't like how much I dwell on the negative things I do and say.
I'm struggling to forgive myself.

Past, now

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.

Pancreatic tiddlers

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.
Easy
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.

A Dr, nurse and a PHD student walk into a room

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.

Time to worry

I can't help it.
I'm trying so hard not to but worry I am.
The unsteady feeling is creeping in, the doubts and fears.
I'm worried.

Places and the past

I'm in Angel
Travelling home in an uber. This place holds lots of happy memories and many bus journeys. It seems to have a draw.

Time ticking, machine banging

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.
Grow slowly

My coach used the phrase 'life limiting'
Am I puzzled by this.

I'm in the hospital now.

Uncomplicated boredom

I was bored at work today. Not sad, or lacking confidence. Just common or garden bored.

It's quite nice

Climbing a rope ladder

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.

Karen Country Club

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.

Make lemonade

I'm angry with Verity

I loved her.
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. 

We took silly and dangerous decisions together and apart and talked and analysed them. 

She was beautiful, stunning. The Disney film Pocahontas had not long been out, she looked a bit like her. I knew the vulnerable side of her and she knew mine. 

I thought we would be friends for ever. 

When I went into hospital she didn't visit. We never recovered from that.
I hated the fact that she didn't come and that I needed her.

I don't need anyone. 

I'm not saying it was her that made me that way, that damage had been done long before that. But that really hurt. I blamed her boyfriend (who is now he husband) I didn't want to blame VHL. 

I only visited my brother once when he was in hospital, no once when he was alive in hospital. The next time I could be bothered to go he was brain dead... then I stayed for the three days. We stayed at a nurse residence, slept on the floor. 

I know he'd have forgiven me for not coming more. But I haven't forgiven myself. 

Missing him nearly 22 years later. 

Have an adventure

Making the changes.
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

Accept
Reject
Change

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?

Medical

We're making a big decision but I'm so nervous that medically I'm going to be stalled. How do people do the thing where they know they might not have the right medical insurance.
Week

Forced sadness

It is that time of year. The memory of the years without him. Grief is often the empty gaps.
Self made grief is a hideous self harm.
And now I need to stop that.
I'm quitting work.
I'm leaving.
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.

But the drugs don't work...

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.
Right?

Day curves are long days

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.

I want to be fixed

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.

Book a day curve

I've booked one, partly to avoid a day at school. I need one.
Ummm

Then the panicked set in

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 ill
Sweaty
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
Sore neck
Depressed

Not all, all of the time!

Action.
Ask scans to be booked a bit early
Get bloods done in next few weeks
Cry
Go to work anyway
Lie on the sofa watching TV upon return
Early to bed
More crying
Write this
Pray?

A rare day indeed

I'm taking the day off work... I don't really do that sort of thing.

I'm poorly.

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.

Climbing a mountain in skis

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.

I can't do it all

I just can't

One week to go

And then some escape

Fear of mental poor health

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.

Booked

I did it, I've booked it.
Terrified.
I need to actually go this time
Don't I.

Why am I afraid of therapy?

I'm lucky enough to have a coach. I need it. She is a fantastic woman and sees, enables me to see. Even the uncomfortable truths and helps me accept many things that others can't.
Today she changed mode and she told me she was worried about me and thought I needed help.
The fear hit, the anxiety of therapy hit. Through her recommendation before I'd got as far as booking an appointment only to cancel it.
I began to cry (as I do now) as I thought of sitting in a room letting go.
I just don't feel I can risk it, I confessed. I can't collapse. I feel like it would be giving in. Letting the disease win. I'm scared of what I will say. I don't want to listen to the voice I've spent so long repressing. I push it away, down and I distract myself.
I admitted to her all of this.
She reassured me it wasn't giving in, it was a way to fight. That I wouldn't collapse but instead learn how to be stronger and I would be safe. It would be the place I could safely collapse and then they would put me back together.
I know I should.
I'm just so afraid.
I want someone to do this for me.
I don't like who I am much.
I don't see happiness.
I feel completely sad and disappointed in myself.
I'm losing but I'm lost.
There is no quick fix.

Sleepless and Ofsted

The alarm will go off soon. I've been awake for at least an hour. Things are sad here in my head.
I'll go to work today and hope I don't fuck up. My confidence is so very low.
I'm thinking of how to escape rather than change this morning.
My husband held me a few weeks ago while I cried and told me ' you're good at your job.'
I don't feel like it... I'm good at some bits. What's the difference between being challenged and told off. What's the difference between being held to account and hounded? The leader?
I find myself absorbing what I can but it isn't working.
And I am working, hours and hours of over time. I feel guilty if I take a night off.

Ofsted looms darkly on my well being. It seems like a cancer diagnosis. Hovering in the background, will we be told we're in remission or that there are tumours to be cut out, or worse a long poisonous treatment of chemotherapy...

I'm a leader, I'm not leading... I hope I'm not because I'm drowning and I don't want to take anyone with me.

Oh and I don't know my data back to front.

What is coping?

I saw an old friend this weekend. We hardly ever see each other, barely contact one another but we slipped into the chat. The comfort of someone who knows you so well, for so long. She's never judged me, well not openly and she could see, I think she could, that maybe, maybe I'm just not quite coping.
The not loving my job was the clincher, I suspect followed by the eyes prickling with tears at times.
We discussed the possibility of post traumatic stress and we agreed it was possible.
I cope, but am I always coping?

2017 with self made family

What a lovely pleasant affair we had this New Year.
It would have been improved sightly if three women I love had made it to give me a kiss but they couldn't. One for reasons of travel fun and one for boring flu based reasons, and one because I didn't invite her.
But I saw other women I love and I felt very happy, all evening long.
It felt like family, because it was and because it was with newish lovely people who feel like my family.
I would very much like an uneventful 2017, one where I gain head space and get to be very ordinary. I know I need some calm, peace and quiet.
So my New Year resolution list...
Build happy memories with those I love.
No health scares for me or anyone else. No big decisions.
No change.
More of the same.
I'd like work to feel purposeful but not all consuming.
Most of all I would like my little girl to be happy and feel loved, all the time. She is my most important bit of family. She is what counts.

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

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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.

Someone I care about is unhappy

In my bid to address the life/work balance I have noticed that lots of people I love are sad because they don't know how to get it.
Then I spent 2 hours answering, reading and flagging emails.

If you let it, it would never stop

Near death, or worse, near potential rubbish ruined life, tends to lead to a cliché of visits, trips, striving forward... I'm no exception. At least at first.
Right back on path. A path I always had the wisdom of saying "at the moment" at the end of my expected career outcome of Head Teacher.
But last year was horrible.
I've never felt so unhappy in my job. I've felt unhappy about some people I've worked with but I've never felt that unhappy at the whole job.
Right now I'm not sure if I can pull apart why and what parts made it horrible. I see by writing that down that it's not one thing, it's all the bits.
But day 4 into the new term, having taken the step back, it feels better. Knowing I don't have to work twice as hard and I'm still making a difference. I'm better physically, well as much as I can expect, emotionally I'm not there yet. A year ago I was feeling terrible, I kept trying to win.
So determined to win that I nearly lost everything.

Back to work

Well here we go
Back to work today... Just a meeting but I have to be on form...
I don't want to right now, my time of focus on my daughter and me has been lovely and I don't feel ready to start back.
I'll be fine... I always am.
I hope it's better than I'm anticipating.
Ummmm.
Right, shower, dressed, get on it.

Endometriosis

I've got that too.

I found out a few years ago, I had asked for investigation, because things had just silly having previously assumed for all of my period having life that it was something to do with having and not having babies.
As far as it goes it isn't so bad but of late it's been annoying.
Clots and confusion. That's my main experience of it.
I wonder if it is connected to VHL.
The professionals don't seem to think so.
Just another thing.
But it's fine
Always fine
It's ok everyone
It's fine
.

Penn Y Ghent

Yesterday we set out to relive a moment in my father's past that meant a lot to him. We, a party of 9 in the end, for his 4x4 wheelchair set out up the path that would lead to the hill (mountain) Penn Y Ghent.
For the first time, in a long time he was doing something with a bit of drama, and the path certainly provided a bit of that.
On occasion I thought his chair, and him in it were going to topple over. But we kept going, limited, it seemed by the battery rather than his determination or stamina.
My daughter was very excited at first, she hugged him tightly on arrival. Admittedly she got a bit bored towards the end but finding worms to rescue from puddles helped.
We didn't get to the top, in fact we didn't get very high. The pace was slow, but we did it.
I'm told on his return home he had a huge smile. He wants to try again.
What I found interestingly sad was that during that time, and the meal afterwards he was so awake, I could understand him better and he engaged. It's sad because I don't see that side of my dad much.
Perhaps this is the start of things to come, maybe my dad is still in there and he's able to be part of my life.

It's a no VSO

I got the following email today, it was going to be my next chapter, it was going to be a way to take a different direction. Now I have to think again. VHL getting in the way, not allowing me to move on, not letting me be who I was hoping to be. I feel really frustrated and I feel like I've let my husband down. 

I cried when I read it. 

I thought it would be ok. 

I was wrong. 

Thank you for your email and I apologise for the delay in reply.

In view of your medical condition, I am sorry that I think it would be difficult to find a VSO placement for you which would be able to provide appropriate medical support should you become ill at placement. 

Although it may be possible to travel annually to have follow up such as MRI checks, I would be much more concerned about you becoming ill at placement where medical facilities tend to be very poorly resourced.  Unfortunately the lack of adrenal glands means that you could become very ill very quickly if not given the correct medical management. 

Infections, including gastroenteritis, are fairly common at placement.  The increased support you would need in combination with very limited medical facilities and difficult logistics of moving you to medical care, mean that this could pose a significant risk to your health.

I therefore feel that a placement with VSO would be unwise.

I am sorry that this may come as a disappointment.

Best wishes

Susanna

And now it's goodbye

Appointment started at 2:15, drops and two scans done in relatively quick succession and then over 2 hours wait to see a doctor.
For those of you who attend clinic 12 or many other clinics at Moorefields you will know this wasn't unexpected. And as I predicted my eyes are the same.
Prof Webster appears, wants my doctor, notices it's me and we have a chat.
I'm going to be leaving the care of his team, I'm going to let my VHL team check me out from time to time. And after over 12 years of waiting a really really long time to see a doctor, the scans, the chats the, this is happening and I'm done.
Relationship over.
We agreed.
Mutual.
Respectful.
I thanked him for his care over the years and he said 'you're welcome.'
I walked out, blinded only a little bit by the sun and resumed life in the world.
Bye bye.

Moorefeilds, it's been a while

I'm supposed to go once every 6 months, I think it has been over 2 years. Cancellation and life getting in the way.
I'm not expecting to have any news, I'm actually expecting to be there for over 2 hours and then hear that they'll see me in 6 months.
Thankfully that's the dull part of this disease, the dullness of appointments and no news. We spend a lot if time bored, sitting through the dull of the dull.

Complain and complain. 

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

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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?

A different body

I've been back at work almost a whole half term.
My body is getting used to the stress and strain of the job again. Lots of walking, lots of getting up and down stairs and the roller coaster of a 'normal' school day.
I love it.
My bum is firmer, my legs are stronger and my tummy is getting just that little bit podgy again.

Who would be a parent

I refer you back to 'Be the Verse'
so painfully true.

It does me good in my role as a teacher to be on the other side, to sit in a  room and hear things about my child. It helps me remember when I have a child who needs help that the parents should know, have a right to know and maybe, just maybe know more than we do.

But yesterday it took me back to that level of vulnerability that I have been experiencing a lot of late. Today I'd bounced back. Yesterday the tears were just sitting there - ready and willing.

It isn't surprising though is it - a very good friend of mine mentioned recently that she knows people who are find with the mundane, but she knows I'm not. Not sure I've ever had the choice. And I don't choose this, much of this happens without my permission. There are days when I would happily stay in bed all day, stay on the sofa, days when I don't want to do anything at all but they are rare.

Most days I want to get up, be alive. Who doesn't want to be alive?

My daughter is anxious - she had nightmares ones that 'flood into her day' she has only told me about 1.
I see a child who worries in a normal way, I can't lie to her, I can't tell her I'm never going to die.

Are we getting back to normal?

yes

It's snowing

There is snow on the ground, I called for my daughter to come and see it, I still get excited at the first real snow of the year and so did she. Then we went back to the warmth of the front room, to watch TV. A peaceful Sunday morning. As it should be.
It has been anything but a peaceful week. I've been back at work doing normal hours, not as many as I usually do but I've lasted the whole week, not teaching too much yet but getting back into the swing. I love my job, the sheer variety of events in the space of one hour would have many a mind boggling. Friday was the highlight, I made mistakes and I didn't get everything done I wanted to but I came home feeling great, buzzing from the joy of a successful day. One where I had felt respected, needed and valued. As I say, I love my job.
My husband didn't seem to care, he was in a bad mood, he went out again - to a meeting, more work for him.
My daughter and I went to a restaurant and met my mum and sister. This is a highly unusual event, they live over a 2 hour drive away and this was happening because they had both been in the hospital with my dad, this week he had spinal surgery.

On Wednesday evening, after a day at work I came home, where my mum was still wondering if she should go into the hospital, still no news. We went in together, and after some questioning and realising he was still in theatre we decided to wait just 1 hour longer, check and see if he was out, and if he wasn't go home again. We went back and he was out, lying with all the wires and tubes and he was ventilated, they were breathing for him and he was being kept asleep. The memories of my brother in that position overlay my father as he lay, cold to the touch and still. My dad is rarely still. We both kissed him, gave his nurse some advice, including what to call him and found out they knew very little, they would only know if he was able to breath on his own when they took the tube out, only then too would they know if he could move his body.

We went home, got a taxi, sat holding hands in silence most of the way, unable to speak, unable to really comfort each other except for the fact of being together, which was important. At home my husband was doing chores, the cat shit chore to be precise. But even after that he didn't comfort me physically, I wondered why. I never ask. I went to bed early, knowing that in the morning we would find out and knowing I needed sleep.

Mum sat on my bed, asking if she should call, it was about 7:20am  - "yes." first attempt there was no answer, second gave us the news we wanted, we think we wanted. He was breathing on his own and could move "all" his legs. I was pleased, relieved, but I couldn't shake the image of him. I went to work. No one asked, to be fair not many people knew, but the ones that did, didn't ask. I felt let down, lonely and angry. Then my Head did, he asked, I faked the happy response everyone wants.

I carried on my day but I was over sensitive to criticism. Finally I was asked why I was in a funny mood. 'A difficult week' The penny dropped and at last someone who mattered gave me some much needed support. I gave them the honest response, not the one they wanted. I cried, I let some of the pain out. But I ran away from it. I didn't stay to be comforted properly. I have my reasons.

That evening I went to the hospital, took my daughter, saw my dad, alive and moving and grumpy. Phew.

Friday I was the happy I had faked to my Head the day before. Until after the meal.

At home my mum was in a very emotional place, after all she really had been through it, but from somewhere, and I still don't really understand what happened, what has always been a rather awkward relationship between, my husband and her, they had a - well not an argument. A thing, he lost his temper with her, she played the emotionally betrayed mother-in-law and my big sister ran away. I wasn't even in the room, returning to a silent husband, retreating sister and weeping mother.

In the middle I stayed, until he left the room and I talked my mum down from her emotional cliff edge. My sister returned, explained her perspective and we sat discussing this and everything and nothing. He sent a text the next morning to apologise to her, she sent a politicians apology in return and we currently live in a state of uneasy silence with neither of them having physically seen each other since. The two most unstable yet constant and consistent people in my life have returned to their homes and I've stayed here, not knowing what I really think or feel about any of it but happy to ponder it on the phone to a friend and text others of the saga. A good story to tell - not like I haven't got enough of those.

A blessing in all of this is just how oblivious my daughter is to it all.

Not sure I'll be spending much time with my mum and husband in the same room again. it's like a divorce!

It's all about me

What a week, much like others I have had but still I think remarkable. I went back to work and survived, but the bit that won't leave me this week is the conversation with my neurosurgeon.

The pins and needles in my arm are not about my brain but my spine.

Today, Sunday, my parents will arrive and then my father will go to Barts, again and then to The Royal, again and then, all being well to the operating theatre to have another spinal tumour removed.

You can see the remarkable connection.

He is going through this and I am thinking of me.

Phased return

Last time I went back to work after surgery it was quite straight forward, I'd only missed 3 weeks and my job was much more contained. I'd planned for my absence and so I knew what I was coming back to. I knew my colleagues well too and they knew me. It feels very different this time and although I want to go back, get back to normal, I've got the nerves of the first day with the added fear that I'm useless and no one likes me.

Extreme I know but I've changed and I don't know what my job might be and how much other people have done and if they even want me back. Crisis of confidence?

Phased too, slow, not right back in. That's why I'm sitting here and not actually at work yet, I'm going in later. This is because my energy levels are lower than before.

VHL gets in the way, this operation was unexpected and I couldn't plan for it, it's taken me by surprise and so are these feelings I'm having.

I hope it's better than I'm expecting and that there are some good old silver linings to this too. Perhaps I'll get some changes to my role that will work out well, perhaps my show of strength in the face of adversity will convince some people I'm not as bad as they thought I was. Perhaps.

Last Christmas I gave you my heart...

What a year, as always... many people write something in your Christmas card along the lines of have a great 2000 and, the next year hoping to be better than the last. They used to, quite a few of my family and friends gave up saying anything like that a long time ago. I only got one 'let's hope 2016 is better than 2015' And I do I really do, it was a shocker of a year and at times one of my happiest.
But Christmas, again one that could be the last, my dad again. Spinal surgery, again, risk of... the usual and the high risk.

I've had one last Christmas in 1999 when I had my brain surgery booked for January 2000. The bringing in of the millennium was the grimmest I'd ever faced. My sister and I sat on the sofa in my mum and dad's front room and tried not to say the things we were thinking. I said after the successful surgery that I wouldn't do that again, last Christmases are rubbish, everyone tries too hard, they are tense and it just makes you sad. I wish I'd been there (at the meeting) to tell them that when they were given the possibility of an operation date of 23rd December, they went for 13th January.

This Christmas proved to be all of the parts I hoped it wouldn't be. Of course the bits I did want were there too -  Initially I had that brilliant feeling of a proper pile of presents under the tree, I had two stockings! My absolute favourite bit. My daughter had a great time and I went to church and sang the descant to O Come all ye faithful. We ate too much food and I was recovered enough to drink and get a bit tipsy. But along with those bits, there was a huge amount of tension, short sharp responses, snapping and criticism galore. I was no longer the flavour of the month, I could do no right and my sister seemed to fluctuate between joy and irritation. There was of course moments of fun and joy, laughter but t didn't last long and when you can't even lay a table without getting something wrong the days are like walking on egg shells. Who'd have thought that less than two months ago I was a darling daughter, incapacitated and in fear of what miserable life might await me. My mother holding vigil at my bedside. Now I am the same old pain in the arse I was before.

My mother is always one for the drama and looks for the absolute worst possible outcome. It comes in handy sometimes, when I need to feel miserable, when I need a good cry. Why is this relevant? Well because now she doesn't know what the worst or best could possibly be, there are no good outcomes for my dad any more. The best is simply that things aren't more shit! And this is what partly made this last Christmas so miserable, so mixed so odd and so oddly familiar.

Counting blessings again

I'm crying, I feel very low and I have some minor silly things that are of little consequence running over and over in my mind. I can't shake it.;
My hormones are rather fucked I think, I'm tired and I feel lonely.
I was dreading a night out last night, with work friends because I didn't know what to expect, how I would feel and it was good in the end. And most of today I felt ok too but it's hard not being well.
My dad never complains, never, well not in my earshot. He doesn't moan and apparently neither do I. A few people have pointed this out to me recently, I do!
I've made steps, I've driven, been into work twice, travelled on a bus and had a drink of the alcoholic variety. Progress right? So suddenly I feel like shit and I went and sat in a dark room and cried and then found someone to hug and thought of the things I should be grateful for.
My daughter
My amazing friends
Having a family
My home
A secure job - even if I don't feel welcome - and why is that well I think my boss might be very good at drawing out my anxiety. You just don't always need to tell someone they are disliked, or not doing something 100% perfectly, because I'll admit it I'm playing at being ok, that awful phrase, fake it until you make it. I'm vulnerable and I'm trying to get back.
The CBT didn't work, there was nothing there I hadn't already thought of or tried but, as we now know, my brain wasn't right and I don't think my hormones were ok, I've certainly slept better since the tumour and cyst were removed.
I'm not officially back at work, right now, very unusually for me I never want to go back.Right now I want to curl up and stay away from almost everything and I know there are only a few things that have a chance of making me feel better, this is one of them, have a good cry and count my blessings

I'm not poor - in fact we are in a good financial position -
I don't live in a war zone or under a dictatorship
I don't feel like I did in November - but I'm terrified of something similar happening again.
I'm loved and valued by others
I'm not bad looking and I don't look all of my years, considering how physically and emotionally hard those have been that's good. I need to put on weight.

One of the toasts last night, said just the once but meant a lot to me was along the lines of, to me not being dead. And I'm not dead, possibly a little brain damaged, maybe permanently but not enough to stop me, not completely. A very good friend came to see me the other day and we talked, she let me talk lots and lots but it was so helpful to hear her tell me that getting on with my life was normal, right and ok. This is hard and right now, no matter how much I try I don't feel like I am coping. I'm not. Perhaps it's not even VHL, perhaps it's other things, things I also have no control over.

That bucket list might need a review - I need something to aim for and not just getting back to normal.

Perhaps what has brought all this on is the volume of TV I've been watching, the banality of human life and the averageness of life, I get excitement but does it have to be related to medical crisis and general - you can't have that.

Where am I now?

The recovery feels slow, still.

I thought I had a lot to say today but now I've started to write I've lost the inspiration.
maybe later.

A lot of time on my hands

I am looking forward to going back to work, 4 weeks since surgery and feels time to go back, I need to take my time as I know I want to rush back. I shouldn't.
I'm well enough to be quite bored  until days like today and then it hurts.

But in more interesting news, it has occurred that while I'm satisfied with my lot, even content, happy and have a plan, my husband might not be and perhaps I need to consider that.

I don't want him to look back and regret his life, he doesn't seem happy to me, and it seems he wants to travel.
So we need to consider it.
I don't want to really, but it's not like it would ruin my life.

I'm not sure what we'll do, will the little one do it, want to do it?

I need to not be selfish, it will be a while to organise it. A bit of me thinks, maybe we might not all go!

Stiff neck

I look back a week and I know I must be getting better,
goals reached

• toilet on my own
• dressed myself
• bath
• got out of hospital
• climbed the stairs
• ate food at a table
• proper shower
• emptied dishwasher 
• walked my daughter to school
• cooked
• dropped fentinayl (don't know how to spell it)
• put Christmas tree up 

next steps - 

• shops
• drive car
• walk to school
• hair cut
• tidy house
• get off the drugs!

then - get back to work, begin to feel like I'm really me. 

counting your blessings

I'm alive, a good place to start. I'm able to take and pick up my daughter from school. My work are being really supportive and I don't feel pressure to return too soon.
I am getting better, slowly...
My friends have proved to be wonderful, caring and positive and just amazing, I feel loved and valued by them,the real friends are there when you need them, the people in my life are good people.
I know myself in a way I didn't before which is actually a mixed blessing because I know some things I want but can't have. That's hurting.

I should remember that recovery takes longer than you think it should
I still feel quite sick.
My body isn't mine.

I can't process it all yet, I don't know who to talk to. I don't know who'll listen well,  I am self indulgent at the best of times but I do need to talk this one through and I don't know who'll listen, well. Who the hell would want to? I feel changed and I don't know what the consequences of that are.

Who can I be honest with? Who can listen?

getting better

Today I feel largely frustrated that I'm not yet myself. I feel sick and my head still hurts and I'm wobbly and weak and my hair looks rubbish.
I have to be careful on days like today because I know they can lead me down a dark path. I am strong, I can overcome this all, I can get used to almost anything, I am strong.
But allow me to indulge myself, what if I'm not? What if  I won't ever be the person I was before, experiences do change you and this felt big, this has changed me. I don't feel like I'm ever going to get better, so much feels like my body doesn't belong to me and it doesn't know how to come back. I feel quite lost in my fear of not gaining back control.

headache
feeling sick
no appetite
wobbly
balance off
arm tingly (left)
eye feel odd
general weakness
shaking

and yet so much better than before the op, they where hellish days, each day more unbearable than the last, I couldn't even feel bored because the unpleasantness of it all so so extreme.
Count your blessings...

I'm trying to.

survivor?

It has been 3 weeks since my surgery and I feel rather disappointed that I don't feel better. I expect a lot of myself.

None of this has been nice, all of it something to get through but I have no choice. One thing is for sure I am living my life in a way I want to as lying there, for almost a month and I don't regret very much and the things I do regret weren't really things I actually had any control over.
I want to get back to that life, I don't want this one,

I should process this all but right now I am indulging myself in TV and friends visiting. I'm weak physically but proven to be strong mentally.

In hospital

Turns out that I felt rotten for VHL related issues as well as others. I'm typing on my phone from HDU as 3 days ago I had brain surgery. I'll no doubt say more on the topic anon.