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.