You grow slowly

Tonight I'm out at St Andrew's night. An annual event here.
I saw people I haven't seen in a while.
'how are you?'
Very normal question.
Who ever really wants to hear the real answer?
This time I resisted the urge to say, oh I'm good. But I have cancer again.
And as the raffle unravels I am doing my best to be the woman I was this time last year.
But each time I know I've changed and my body has changed, not just older but more tumour. More surgery. More risk.
One day I'll run out of kidney.
But not yet.

I didn't win that raffle. 

I don't want to

I don't want to
I don't what to chase
I don't want to ask
I don't want to know
I don't want to stop
I don't want to carry on
I don't want to cope
I don't want to fall apart
I don't want to

I'm nothing special

Some days I just can't believe what I'm juggling in my head. And there are people here who see and know that.
But not my husband.
When asked,  do you think I'm impressive how I cope with all this, he replied
The doctors are.

But me?

I've blocked out the exact details but the gist was no.

No

No

And I didn't know what to do with that.

Did I show weakness by asking?

Is it that his permanent ex-pat lifestyle has left him devoid of understanding.

Or

Is he right

Nothing special about living with VHL.

How far can you go?

The surgeon has a knife.
How far should it go?

How often can you be cut and how many times will it hurt?

3 years hence

Facebook tells you about memories. I'm struck by where I was three years ago. I'm in Zomba today and I climbed and walked and saw things I never imagined I would.
I did it with new friends and my little family.
I'm troubled by the next phase but not thrown by it.
I will make it through and I have such a huge amount of love and support.
Today I am aware of how blessed I am, despite my next VHL hurdle.

Party tears

I do this, this is a thing I do. I cry at parties.
I, of course, do it discreetly.
I cry because the timing is good.
Drunk friends, drunk me

I let myself feel

I let myself cry

I move on

I cope

Epiphany

Lots of people around here like climbing mountains.
I don't.
I'm told you get a great sense of achievement once you get to the top. Then it's all been worth it.
I thought this was true but I've realised for me it's not achievement I feel.
It's relief, relief it's over and the easy bit is ahead of me.
That's why VHL is such a arsehole disease. There's always another mountain.

The news we're always waiting for.

This is a familiar feeling. I don't think it is ever different. The waiting and finding out.   

The news is:
Brain and spine stable.
 A lesion in the right kidney has grown from 13mm to 18mm and Prof D thinks it might need treatment and he is going to write to the renal team.

What's different this time as I've found out via a short email and now all my questions are left completely unanswered. Although if I had been there in person, Prof D would still have to ask the renal team.

Might need treatment.

When?

Please say, not for a long time.

Please say, maybe never.

Please don't say you need more scans.

Please don't say, soon.

Please don't end my current bubble of happy.

Holding back tears, letting them come. Fight the urge to tell everyone. I FUCKING HATE VHL. Fight the urge to get sympathy from all sources.

And into strategies, - if it's this then we'll do this. What's 18mm? How rapid is that growth? What was it last time? Which side?
We'll cope. It's fine. I'm fine. Should I tell my mum and dad before I know more? They'll only worry.
Cover it up so my daughter doesn't worry.

And then numb.

Dazed.

Tired.

More questions without answers, more guesses.

Sadness.

Fear.

Blog.

Life is a long game, if you're (un) lucky

One whole year.
It reminded me that I'm in charge of this. This life. This journey.
I'm in a state of neutrality right now.
I've decided to be brave, to call a bluff and commit to this, this life.
I've chosen it and with all the inevitable frustrations and pleasant irritations this is my life
I've taken a stand in this anniversary.
Today my daughter asked me if I missed my brother and I knew I did. But more, I missed knowing who he could be now.
And with that I realised I'm me.

I'll forget that in due course, but right now...
I'm no body's fool.
I'm a warrior.
I fight and I win.
I've lived in fear and conquered it and I haven't ever let anyone truly get in my way.
I've let myself love with all my heart, even when there was a shield refusing to accept it. And I've stood my ground in the face of horror and pain.
I will not be sad for the sake of it. I will be sad for you. I will pity the fear that you allow to control you and I will lead by example.

I rise because I've learnt to.

I survive because I've learnt to.

I thrive because I know when to conserve and gather strength from those who love me.

Good bye.

The gaps

I had an interesting WhatsApp chat with my dad yesterday.
I asked him the biggest gap between surgeries.
13 - 30
Not bad.

I think those who have proper cancer might call it remission.

We then remembered the other ones, how many, what they were. There e 7 or 9 he couldn't quite remember. We didn't what to count the radiotherapy as.
All very matter of fact.

He's always been cup half full when he talks to me. I don't know how real that is but it's his way of talking to me about it all.

He's on my mind often... At the moment I'm thinking of him because I've hurt my index finger on my right hand. It's stopping me from doing some things, I am finding ways around it but my husband had to cut my dinner up, I ordered something I could eat with a fork only and I keep going to do stuff and pausing, finding a way around it.
I was asked why I didn't use my left hand, I reminded them that if I wanted to guarantee it would get in my mouth. I've been good at hiding my disability. Or have I been letting myself continue to be disabled?

It's just my finger. It is temporary.
For my dad, his whole body won't behave. VHL and the subsequent treatments have caused all this.
He had years and years of normal. (VHL normal)
I want even more years of normal. Proper normal.

He'll be 70 next year.
Lots of people don't get all those years.
My brother didn't.
My finger hurts.
13-30 the biggest gap for him

0 - 17

17 - 20

21- 34

34 - 36

36 - long gap please
I don't count the eye stuff
I think my numbers are right.

My 40th year

For those of us with VHL each year we make it to a birthday is a victory. We describe ourselves as warriors and so these victories each year matter, one step closer to winning the war.

It was less then 10 years ago that I received a letter telling me my life expectancy. 52. I have screening.
This wasn't a predictor of quality of life, just the years survived. My father will be 70 next year. He survives every day. I question how much he lives.

This my 40th is a big deal, 50 will be too. 53 is the year I intend on having the mother of all parties.

But more than that I fully intend to live my life. I intend to be, love, laugh, hold others.

Waiting

Grrr, I'm told the meeting is at the end of August.
I'm not feeling very patient

Self preservation

Wow, we're not quite back in Blantyre but we're in Malawi. The journey has been rather epic so far, but nothing you can't handle when you have two people who love you with you, and knowing that you walk with privilege and money and ways out.
I'm sitting feeling tired but calm, another year stretching ahead of me, one that I hope is as good as the last.
It's been a while since I've been able to say that.
The stresses and joys of England and being in that place I also call home have put into sharp focus the reasons we're not in a hurry to go back to the UK.
Here is different and that's what I need.
A friend mentioned that they understood the need to be away, self preservation they called it. I agree.

I dreamt of a spreadsheet

In my subconscious I'm getting impatient. Last night my dreams were about getting results and a fictional spreadsheet of my tumours and their growth was created.
It's not a bad idea.
I think it comes from explaining to my daughter what they do if something is growing.
They plot it, monitor it and we see.
I might make my own spreadsheet.
In one of my dreams I went to my old house. It was full of students and they were painting bits of it yellow.
Then my Dr told me the cancer was only growing slowly.
"That one?" I asked pointing at my left kidney. He confirmed.
And I knew that was that.

Sister

I knew coming home to Norfolk would be the hardest bit of the return trip.
I don't feel like I belong sometimes but I fit here. The place of my childhood, pointing small things and places out to my daughter. 

Yesterday, fuelled by drink and sun my sister did what I knew she would... She let me know that she's angry with me, she cried, I cried, she shouted at me and found blame in me, my mum, my dad, herself. The Catholic way of dealing with whatever it is. 

She shouted that I was so self centered. Recognised that she thinks it's not my fault, that that's the way I was brought up, after my brother died. And in many ways I agree, she's right, I am. I do things for me. I choose life, I choose experience. She realises too that I'm expected to live two lives, mine and my brothers, and she feels she has to stay here and be the one with mum and dad. My mum was so worried. She hates it when my sister is angry with her. My poor mum. 

I could go into more detail but I think it's ok for now, until I do something else (or don't)
And in amongst all that my dad needed attention.
I'm too tired to explain it all.

Love and hate

I went to a Pilates class yesterday, the day before I felt poorly, in the class I felt oddly young and old at the same time. The women doing the class were mostly over the age of 65.
I wobbled a lot but was able to do it all. The instructor, who was very good, tweaked me as we went along. I learnt from her I don't center myself, I can adjust this to help my posture.
My body matters to me, like many woman (and men) I spend too much time worrying about what it looks like. Possibly unlike others I spend a lot of time worrying about what's going on inside it too.
This period between scan and results is so hard. This is my annual highest level of ongoing stress. Prof Chew once suggested tablets to get through this bit. I didn't say yes, I manage through distraction.
'how's your health?'
Common question. I'm glad people ask, I'm glad they know it's an issue, but I wish they would remember that I'll pretend to be fine and brush it off with 'no news is good news' or something like that. But I hate this time.
This time is also the first time I'm not going to be here to talk through the results. What if they are complicated? How many of these versions can be, oh this is 2mm bigger, but it's fine, this is new but a growth, this is the same, oh did we mention the other 8 tumours. They're basically fine. Any questions? Because they tend to be the best case scenario meetings. What's that going to feel like in a letter or email. I'm going to freak if they suggest Skype.
And how do I negotiate worse news?

And right now that would be...

We would suggest bi-annual scans

or

You have a new brain tumour, brain stem, inoperable... Gammer knife

or

Kidney cancer

or

Something I haven't yet realised is shit

And I catch my face in the side mirror in a changing room and I feel I look sad, the clothes I'm trying on just don't make me look good and I give up. Just for a few minutes. I relent and feel utterly depressed. I regret everything. I wish everything I have chosen is different.

Then I snap back, I go and look for school skirts for my little girl and wander back to the other shop to meet my in-laws and carry on.

My London

I'm in my London. My London smells, it's crowded and busy, it's got lots of people, it's got fashion and noise. It's got money, poverty. It's got tubes and buses and cabs. It's got cafes, restaurants, pubs and hospitals. It's got family and friends. It's got parks and schools.
It is my London and it's home.

My London knows me and looks after me. I have love all around me, the familiarity is like a blanket on a chilly night. It gives me confidence and freedom and I love it.

I had my scan, I spent that time thinking how lucky I am. My nurse made sure I had a scan. Not in my first hospital but my other one. I was asked the list of questions, I answered them confidently, reminded them of the contrasting fluid. I asked for a blanket.
The next day I went to my hospital for bloods and I was greeted in the ward by my first name. We caught up then too. We agreed the new health secretary looked like he was going to be a big a arse hole as the last one.
That bits now done.

As we travel home

I've experienced a decent range of emotions about coming home. My time in Malawi is in no way over and it was a reluctant choice to travel back this long holiday.
Already the wealthy world is all around me as I sit enjoying 'free' WiFi in a luxury lounge we've paid for so we can feel more comfortable for the over night airport stay.
I'm drinking and reading and I'm relaxing.

Just a short while ago I was negotiating when to sort out the best time to wash, we juggle this around when Escom is giving us power or not.
I was only just leaving jobs for our house keeper.
I was just a teacher and now, now I think I'm a holiday maker.

Now I'm...
Going home to those I truly love and miss. Unable to fit them all in (humble brag.)
Going to my other heart, Tottenham and my old heart, Gorleston-on-sea. Leaving this new heart, the warm heart of Africa.

I'll have my scan. I'll wait to know, happily distracted by the sense of déjà vu I'll no doubt experience.

I'll tell the same stories over and over again.

And then I'll come back the way we've came and hope I still love it and still feel like I belong. 

Ssshh, don't tell my mum

It turns out the medical insurance I had was not fit for purpose.
Having filled in the form for a much 'better' one, I'm still not insured in a way that makes me feel safe.
I'm covered for everything but my condition. So where does that leave me?
Still better off than almost every one I know with this shit burger of a disease.

Update:

Getting a slightly better deal. 

The simple pleasures in life

This morning I am content and happy. I'm in bed, a lie in, reading, blogging and drinking a cup of tea that my husband just brought me. He's going to make pancakes.
My wonderful daughter is with her friend, they had a sleep over.
I'm going to drive up a mountain later and have lunch with my friend.

A wonderful friend back home just offered to do a beautifully kind thing.
I'm still not feeling the need to get up

If VHL has taught me anything it is to relish these moments. Notice them and be glad. I'm a privilege and lucky woman.

I travel back to the UK in a week. The buzz of London will fill my soul and no doubt I'll quickly re-ajust.

But I'm ready now. I need to stop worrying about it and be ready to enjoy that. How unbelievably lucky I am to even get to feel anxious about a return trip. I've had a word with myself and I'm going to look forward to it.

Someone else...

My mum is due to have an operation. A full knee replacement.

I don't know much more at the moment but from my dad and sister it's clear that they are all feeling worried about it.

It's easy to forget that most people rarely need operations. So they are not ever routine.

It's not this that's making me feel anxious about going home. But I am. Life here feels normal. A colleague said to me yesterday 'you won't realise how much you've changed until you go home.'
I thought, I haven't changed. I'm the same.
She must have sensed that. We were sipping wine, she's been here over 5 years. They go 'home' every long holiday for the whole 7 weeks. She told me how she feels when they are staying in England.
Lots of her feelings were about materialism. The sheer volume of everything. The waste, the indulgence.
I'm wondering how I'll feel about all that.
I feel extremely privileged here. We have so much.
We talked and talked. Small stories that were so based on this life here in Malawi. It's going to be hard to help my family and friends back home to see it. The ones who have been will understand more.

I'll pack a bit more this weekend because we fly in a week. I'm nervous. 

Medical insurance

It's one of the reasons I've thought I couldn't ever be anywhere but the UK. Now I find myself filling in forms, my husband doing it most of the time. He remembers the facts. He likes those.
Cancer - tick
Brain tumour - tick
Cardiovascular - X
And on it goes

The ticks playing a game with the xs

On evenings like this I realise I'm living in my current bubble.

I like my current bubble.

Saint

I was called a saint yesterday. It's because this weekend I'm looking after 4 children, I'm responsible for my pals 3 children.

I don't see it that way.

I look after 20+ every day. Every school day that is.

What's more important is that my new friends get to be together.

Together, it's an important thing.

Soon I'll be home, London, Rugby and Norfolk. And I'm still feeling mixed about it but it will mean I'll get some together time with people that matter.
And the craving to go to London is growing as I watch a TV show set there. I keep seeing bits of the London I know. I'm looking forward to being there.

The mundane truth

I'm drinking wine, on my own. At university that was a no no. Now it's very normal.
I've had a very mundane day. And I've liked it. I've kissed my little girl and had lots of cuddles.
I'm watching Netflix and I'm a bit tipsy.
This is normal. Yes? 

Things are different... I shall add as we go along

A question I hear in my head often is, why did we come here. The truth is always:  "many reasons."
Each one of those reasons would be enough and each of them is the only reason at some point.
Now we're here and in just a couple of months we'll be taking a trip home to Blighty and I suspect some of the reasons we could have stayed will make the following August a much harder trip.
But Africa, my piece of it is very interesting indeed.
There are many small things that make it different.
I intend on adding to this list.

The weather...
Watching out for stupid goats on the road
The crisps aren't very nice
We don't always have power
It's big
There are lots of holidays
No need for heating in the house
Selling live chickens on the road side
The creapy crawlies in and out of the house
Sitting in the sun most days
The colour of everything
Seasonal vegetables and fruits
Having to the malaria kits and treatment with you on trips
The lake
Solarising water
Seeing poverty
Newspapers
No NHS
the language
Price of gin
Clothes shopping
Carrying things on the head
No TV
Having staff

Dust

Babies on the back

The colour in August, spring

Fucking huge spiders and lots of them

Winter being cold

Mosquitoes

Poorly but fine

I've got a nasty cold. I'm in bed but I can't sleep. I have a temperature. But I'm kind of fine.
It's odd feeling ill somewhere very different. But easier to stay in bed as the pressure to get into work isn't any way near as acute as the UK.
I'll go and teach my year 7 but otherwise l will rest.
See if I can get any sleep.
My little girl was worried, it's hard for her. Her mum in bed brings back too many horrible memories. I can see the concern all over her face. Only thing to do is stay alive.
As obvious as this is to say, I do so hope I don't need any surgery for the foreseeable future. For her as much as me.

Each time I cough

I used to hiccup.
Now I cough.

Funny. Both involuntary one quaint the other a potential for germs.
However I now do the later more.
So hidden, my quaint disability. I'm struck that it's so survivable. Well at the very least I've survived. And so has my dad. Not my brother.
Today I took a step back into the path of a career I had been so very certain of. Without knowing it the growing number of hiccups meant I couldn't be who I assumed I would be in that role.
And now I am feeling that despite my ever lasting odd cough I'm more myself.

I feel like it's going to be a good few years. I hope VHL agrees.

What makes me happy?

On Monday I went to first Zumba class. Unlike my ridiculously fit and capable friend, who bounced the whole way through, I look it fairly easy.
As I shook and stepped and laughed at my lack of coordination, I was reminded of how different life could all have been. Of the brilliance of the human body to recover and cover up. Who would know my knee hurt. Who would know my arm tingled away. Who would have believed that the woman who lay in a bed for three weeks would now be grapevining her way across a school gym in Africa.
That I can laugh at myself and find joy.
I am finding the joy in life. My confidence is growing.
I am often happy.

I feel so happy

A brilliant night, an event that I helped organise and it was superb. I was happy in every part of me. Well almost.
I watched my daughter and loved her. I enjoyed myself, having found the freedom in dance. I belonged and I was loved in return.
And now I'm in bed with my home the centre of a brilliant party. I'm too tired to stay up. But I'm brimming with pride and satisfaction.
The ever present cloud has a bright silver lining and that's what is shining tonight.

The morning after the night before.

My friend has gone back to the UK.
I cried at the airport. A definite feeling of grief today. I cried a few more times after that too.
I miss her already.
She's such an amazing person. Beautiful in mind, spirit and all the rest.
It was lovely just having her around gave me the confidence to be a more the me I am in London. I drove more, talked more, listened more, possibly drank a bit more and danced.
I love her.
Oh I miss her

Oh to love yourself

I'm having a lovely time. I'm at a party. I just went to the toilet and saw my face. Not bad
Here I am. A foreigner. But I feel so welcome. And I felt confident and happy.

I had two people by my side who I know love me. I've never been too sure if people do but it's a new feeling to be confident in their love.

The fact my mum and dad love me unconditionally has sustained me. But my self confidence isn't quite as it seems. 

Saw me through the chapter

A colleague is writing a blog. I'm quite jealous because I don't think I can share this in the same way.
She tells of private things and they are of course public now. And so do I. A lot of me wants everyone to read my blog. I imagine it would help people, maybe understand me. And then I wonder if that's even true. The age old, depressingly clichéd question; who am I?
More than a blog
What was hard to read in the blog, just started was the phrase: saw me through the chapter.
Because a life with VHL is not ever going to be a chapter. If only.
And that's just the VHL bit.

Humph

One gone, one to come

Time with those you love is precious. A not blood, not my side, but great friend non the less, left yesterday.
Tomorrow another friend arrives.
These are both people who when I was in the UK I didn't physically see very often but we put the effort in. And they have certainly put it in by coming here. On their own.
I'm a happy and grateful woman.

In the world of VHL that heading could easily have been about tumours! 

Trying to get the right medical insurance over here is making me appreciate the NHS in ways I hadn't fully recognised. 

I miss doing food shopping online

Silly but I'm missing the comfort of my habits this week.
I'm missing my ability to get what I want and need.
I can't just pop to the shops and know what I want will be there.
I rely on my husband and it feels odd.
I'm oddly less independent and it feels strange.
I just feel a bit lost this week.

An ordinary day

Today was so simple. It was an extraordinary normal day.
Being a small part of lovely people's lives is such an honour.
Lucky me.
I'm blessed.
I enjoyed today because I was very normal.
A little bit of me was sad.
Most of me was quietly greatful for the simplicity of friendship and the luck of my place of birth.

Hard to fall asleep on a day like today

Two posts on one day.
I'm feeling loved, unsettled, sad and proud.
I should go to bed. I should be very normal.
I should try to get on with life.

But I'm haunted by events of 22 years ago.

The day it was confirmed he was dead. And as clichéd as it sounds, nothing has been the same since.

It just doesn't go away. The loss. How could it? No resurrection planned here.

To quote a wise woman

We will both always be running (even sprinting...) to fill the void our siblings left and live 2 lives into one.

She knows. She's felt the shadow of loss and the burden that it can leave you with. But the Ying and Yang of trying to accomplish and achieve so much more that perhaps, would not have seemed necessary had we just been left to be the number of children our parents planned.

Maybe that's why I'm struggling to go to bed. I remember him often. I value his memory always. But this day. This anniversary marks a shift. The balance will tip now.

It's nearly tomorrow.

Tomorrow could be just as sad.

But I'm getting tomorrow and for that I'm very glad.

Alive as long as he's been dead

My brother.
22 years.
Which of course means that from now on he's been dead longer than he was ever alive.

What should I feel?

Other peoples tumours

The first time it occurred to me to look up VHL online I was thrilled. A sense that it really did exist, rare but real.
Then the day I realised there was a group.
Not only was I real but there are more people than I could have imagined.
I connected with a couple of people. I'm still connected to some.
And now it's Facebook.
But now I read about the VHL community and I know I'm not alone. I don't feel rare but I feel the inevitable.
We advise each other, we share fear and pain and we see scars. A lot of people pray for each other. That's how many justify the experience. But I'm doing a good job of ignoring my potential tumour growth. But I see each one.
I suspect we all do, see the next operation, dreading the results of the next scan.

You can't unsee it

I don't recall who helped me see a moment of truth this week but I think it's stuck now.
Here, there is obviously and obvious poverty all around.
But the comfort I have found in the UK from thinking I'm making a difference can't obliterate that where ever I am on the planet, they will still be poor.
So what do I do?
I keep on speaking.
I communicate.
I give when I can and to people who need it.
I will

While I'm swimming he's drowning.

I feel a lazy sort of guilt right now. I'm sat reading, g&t in hand and looking over the lake. Like I've run away. Which I think I have. My mum and sister, meanwhile are at my dad's side, battling again with the fact that he's in hospital, again. Am I allowed to do this?

I am anyway.

Bad daughter.

This time I found out via WhatsApp. My preferred way of knowing he's ill again.

I tell myself, I wouldn't be there. I'd be in London. Only leave if he looked like it was the end. The real end.

I secretly said to myself today. Hold on until July dad. Let me see you one more time. I didn't take you seriously when you said it would probably be the last time we saw each other.

And what would I want from my child?

Honestly, not for her to fuck off half way round the world. But I know too, I don't want her to be trapped like my mum and sister.

And the inevitable fear and hope that if he wants to, then times up. I wonder how and if he does want it to end. I recall him acknowledging the wishes of his father. He didn't want a slow undignified drowning into mental oblivion with dribble on his chin. Heart attack. I think he got his wish. Too late for a fast exit for my dad. I wonder too if he keeps agreeing to operations so that one, finally completes the cycle. Put to sleep gently. Like so many of our dogs.

I wish I knew.

I can't ask.

When I do, I don't think he tells me the truth. And that might be because he doesn't know himself, or he doesn't like his truth.

I don't think I'll ever know.

Start of the half term

Which means I'm half way through my first year here and it's gone so quickly. It feels very normal too.
I've had a few things to worry me but not many and so far so good.
So I feel blessed and positive.
Worth noting.
Worth saying it.
Worth this short post.

Who can you trust.

Messages from home. Fear and distress and the wolf in sheep's clothing is being seen for what she is.
And yet I can still sense that some good people are duped by the smile and mutual loathing for another. And in some cases a drive for self preservation.
I want to be liked and respected.
I want more than anything for both to be given freely by myself to myself.
I'm predisposed to pity those I believe to be hurting. I'm built to try and protect them. And so that wolf I can see needs care, needs to be helped to see their own faults.
I couldn't be the one to do it.

The importance of sleep

I'm sipping tea, listening to one of my favourite podcasts and thinking.
And despite the ever present undertones of anxiety and self loathing I'm happy and rested.
When I get back home, if I still feel I need it I'll tackle those two but I'm hoping my time here will continue to lessen them.
I've slept well.
I'm aware of the balance of life being so much better here. And I genuinely feel sorry for my colleagues left in the UK who are not enjoying this life style.
I've always been of the opinion that sleep is very important. The podcast just mentioned an article about it. Science has confirmed my instincts.
Sleep is easier here. Easier now.
I'm happy.
I know the ups and downs of happiness and so I'm going to do my best to endulge myself in this current batch of it.

Facebook and my mother

Twice in four days I've read a post from my mum that states my dad has been close to a crisis. Both times the way I found out not all was well.
These are cortisone ones.
The first suggested that all was now well.
It wasn't.
He was admitted to hospital after that one.
This next one shows a picture of my mum and dog. Not one of theirs.
It implies everything is under control.
It isn't.
I'm thousands of miles away. Trying hard not to let my mind drift to the news I'll one day hear.
There isn't anything else we can do. Or, your father is dead.

He has a mass.
He's getting a scan.
He's signed a DNR.

That's not on Facebook.

Yet.

Going for it and not getting it

It was worth a shot, but it certainly has left me frustrated. I'm good at seeing ways to improve things.
I care about students.
Doors shut but hey, windows open.

Hidden disability

I've started playing ultimate frisbee. We do this as a family.

I'm not as skilled as most people, I'm a little unfit at the moment and I have not quite got the hang of the rules and then there is my hidden disability. I don't go on about it. No one but my family know and they don't always remember. I'm partially sighted. And it's not a big deal the vast majority of the time. But it effects my ability to understand depth of field. And in the fast pace of ultimate frisbee I struggle.
And today it got to me. I usually laugh off not being very good but I felt got at. I didn't say anything but my lack of skill meant that some players wouldn't include me.
I don't even bother to try tennis or squash because I get frustrated by constantly picking up the ball. But in a team game I thought it would be different. My brain will learn a different way to 'see' if I'm given the chance. In roller derby this was true, I learnt to look at shadows or to turn my head just one way, or listen out for changes.
It's unlike me to give up and despite wanting to walk off the pitch I stayed until the end. But right now I don't want to go again. I feel excluded by some.

Being a little inspired by missing home.

I felt terribly homesick this morning, this has been brought about by my mother's insistence that I come home this summer followed by a dream about going home but not being able to see them. Mum and dad both know they won't realistically be able to come here; not together. I miss my family being close.
I cried a few small tears and held my daughter. She recognised my pain and immediately held me, tight and offered words of comfort. She is fast growing into an emotionally astute child. I see how much she yearns to protect me and keep me safe. She knows, as I do that that is in her arms I am my happiest and  we both know our relationship is better for the move we've made. Here we spend time with each other and I know it was in vogue to say this some time ago but it is quality time. We talk and communicate. I'm a lucky mum. She's becoming more and more independent and yet we're so much closer. Next academic year she'll be in my school. I hope the teenage years don't get in the way too much.

Accompanying the fleeting feeling of missing home she saw the importance of saying she too wanted to go home, for a visit. I don't think she really meant it. I get the feeling that Malawi is home for her in a way I hadn't imagined possible in 6 months. The UK is my home, but Malawi is growing to be home. Where she is, that's always going to be where my heart is.
With this a message from home reminded me of the love I have in the UK too and how secure my place there is. He makes me feel respected and valued with just a few sentences. It was the bolster I needed to get up and get on with the day and to remind me I can be an inspiration here too.
I hope so much that the most recent opportunity that has presented itself comes to fruition but I know that of this one doesn't, something will. I'm a seeker, I look for life in each encounter.

I'm happy to give that credit to VHL today.

Plus I should be able to get an MRI if I go back! ONe worry out of the way oh and I'll have amazing cheese and chocolate orange and buy a bra!

Good bye 2017

You've been a strange year.
In 2017 I've been at an all time emotional low and felt like my life was destined to be rotten. That I was rotten.
And I'm about to host a party where over 30 people I didn't even know 5 months ago are coming to celebrate moving into 2018.
Who knows what the next year will bring but this year has proven I am a warrior.

Happy New Year.

Hugs

My husband and I binge watched a harrowing TV series this week. In it hugs were mentioned, used and perceived in various ways. It had to be deliberate. A hug, so innocent and powerful, and creepy.
It's only a few years old but already dated.
Hugs for boys and hugs for girls.
Hugs for comfort.
Hugs for memory.
Hugs for plot.

And as I watched, crying silently and feeling the closeness of grief my husband asked why I watch if it makes me depressed.
"It doesn't make me depressed."
"Wrong word."
"It pulls up the saddnes. I feel sad."
And a moment of truth sounded.
"I'm this close to saddnes all the time."
And unsaid... That's why I have to keep busy, that's why this helps. It's controlled.

And the hugs got to me. And another penny dropped.

My dad can't hug me. I don't remember the last time we did and when he could.
We hug him. Gently and carefully because it can physically hurt him. This fucking disease has stopped my hugs with my dad.

My boys

How do you write about them?
My boys, the ones who got mixed up in it all.
One definitely missing and one definitely dead. My boys.
I wish I was still able to try and be part of a solution. But what a joke. I've got more chance of saving Malawi.
I think of them and I worry about them.
Here I can do nothing.
My boys.

The email

Dear hammer legends and woe defeaters 

I wrote to you about 18 months ago thanking you for being part of what saved me from the horrible tedium of my hospital stay which preceded having a rather nasty brain tumour and troublesome cyst removed. That was when I became a PCD. It was my husband who put them on the tablet and while I lay in deep fear and the unknown you helped me. It's hard to explain how unpleasant the experience was and I have had a few hospital stays in my time due to the disease (VHL) responsible for the brain tumour in the first place. My then 8 year old daughter and ever strong husband must have been to hell and back but we all fought the good fight and thanks to the amazing NHS and the team around me I survived. Elis you replied and that was so kind of you, partly you were inspired by the odd chat you and my husband had had a test gig of yours about politics. 

Naturally the story continues, the return to work following such a difficult surgery was okay at first but, despite being used to the hideousness of VHL, this one shook me. As always my husband did what he could, being there, reassuring me, putting up with my lows, doing things like booking us tickets to your gigs as he knew it would cheer me up, it was then that I had my first real understanding of darkness I had heard you and many listeners experiences. Being a practical sort, I started seeing a psychotherapist, I almost started anti-depressants (they didn't work for me) but what really changed and the reason I'm writing to you again is that one morning, while sitting in tears, trying to find the strength to get up and get on with the day my husband changed our lives. He made a decision for us, all three of us to live our best life and stop the cycle we were all in that meant we were miserable. He held me and said, 'that's it we're moving abroad.' 

And so after CV writing, job applications, skype interviews, house renting out, resignations, freight filling and emotional farewells I am writing to you from Malawi. I am back to being a drama teacher, absolutely loving it. My little family is spending more time together, less stress and the darkness and nagging anxiety I couldn't shift before doesn't get much chance to infiltrate the overall sense of calm and happiness I feel. 

I know you won't be able to read all this out, but I wonder if on the podcast you could give a shout-out to your PCDs in Malawi (You definitely have 3, my daughter is 10 now and she thinks you and Adam Buxton are the best) and if you do, could you let my husband know he is the most amazing partner who has saved me by ensuring we are all living our best life and that I love him and appreciate and value everything he has done and continues to do.

Thank you for the honest and fun radio, I'm always delighted when I hear you're doing drive time. 

Swimming with the sound of hippopotamus

I've never had a December like it. Today I'm living my life.
And I have been as much as I can for as long as I knew I had to.

It is a sensational mix of the glorious and terrible. It's easy to forget the abject poverty around you and get on with it. That's not a good thing but it is a thing. 

Christmas in the rainy season

The images from home are full of snow and here we are in the rainy season. A huge contrast and reminded me of the contrast in my Christmas last year too.
The darkness of life a year ago was not being covered with a layer of snow. It was cold and grim.
It's not perfect here but it is so much better. It's brighter and we're all happier.
I've made a couple of real friends here already. Proper ones who are mine now. They are on my list.
One of them just gets me and last night gave me just what I needed. A shoulder and a stern reality check. She gave me the strength to get up and get on.
I'm so lucky. To travel this far away from home is a risk and I miss my friends so much at times. To have made a new one here that I know will help me and I'll help her is wonderful.
Phew.

In a show

I'm in a pantomime. I'll up date you!

Probably nothing

The panic has subsided, a problem shared! The pins and needles isn't daily and most likely more about a stiff neck due to exercise. But I'm still a bit worried. The NHS feels very far away.
I haven't had a reply from anyone about MRI scans here and yesterday a colleague was complaining about the terrible insurance we have.
I am good at pushing this all to one side. My significant other is the world champion.

The confession

I'm considering applying for a job. I'm unsure if I should. The current lack of work stress is nice. This would potentially change that.
But VHL has its own way of making things stressful and for the last few days I've kept that all to myself. Until tonight. Tonight I confessed.
In the safety of his arms and while we were being honest I told him.
I have a new symptom. I'm scared. I want to be in the safety of home. It's not my imagination. This could be serious. This could fuck everything up.
And I cried.
Then we talked strategy.
Then we looked up neurologists in Malawi.
Then we looked into the medical insurance.
And then we had a beer.
Who needs the use of their arms?

Me, me, I do. *puts hand up in the air.

I just can't get to sleep

I'm not going to post this straight away. But I can't sleep.
I've let someone I care tremendously about know this blog exists and he's reading it.

I can't get to sleep for all sorts of reasons but it started because I drank too much and I miss my brother.
My daughter was asking about him today.
I can't know him anymore. He's almost been dead as long as he was alive but as his little sister, well, that passed long ago.
He knew me before I knew me.
He'd seen and understood what my feet were long before I stood on them.
He shaped me without intending to. He was my big brother.

I wonder if I seek that gap out.

And I'm sad. I miss who he could have been.

To be or not to be

A simple question. Because I'm a to be. No matter what. I've considered the 'not to be' talked my way into the who would hurt. How should I do it. That was before my brother died.
You'd have to be the most heartless person in existence to do that to your parent's twice.
No,  I keep on with the to be.

Despite the agony.

Living your best life

There were so many reasons to move. Today I sat with someone I've only known a little while and confessed to a snobbery I have. We talked about it, he listened and I felt sad that I'd left those vulnerable kids behind.
But in my heart I knew I had to. To save me and in turn my marriage and my child.
I had to find joy again.
I was no use to anyone with darkness knocking at my confidence. I can blame many things, people and naturally myself for the level of depression I experienced but that doesn't help.
Change did.
Big choices, small ones, brave ones. 

They made a difference. 

Love and support.
I am so privileged.
I am lucky despite the troubles I have faced.
I was created with a genetic defect but I know it gave me a strength that has helped me not just survive but thrive.

2 years hence

And Facebook knows. So do I.

Pardon?

A common dad joke, anything to do with hearing and my dad would always say, Pardon?

He can't hear at the moment.
Pardon?

Yes, you heard me. He can't hear. No hearing. Deaf.

Says he'll learn sign language.

I guess we all will too.

It's not clear why he is deaf. Old age, the gamma knife surgery, wax...

The hardest thing is that one of his all time joys is listening to music. His life is already so limited. Watching a film, listening to music, hearing. This really isn't fair.

#metoo

This hash tag has come at a time when I am strong enough to own it. Oddly having just experienced another incident. A drunk old man. The shock was such that I froze and I found myself right back to the self blame, it's what I do that makes these things happen.
I was too nice to him
I didn't say no
I didn't object to his obviously flirty behaviour the first time I met him, I smiled

But the impact of him grabbing my face and kissing me on the lips and then later grabbing me again and kissing my neck was fear. When I got home to the safety of my husband I cried and cried.

My list is long and as I read other stories I recalled so many more.
They often only last 5 seconds, the cat calling. If you don't smile it's normally followed up with a  'bitch' or other insult.
"Smile sweetheart" just as creepy

Then the slightly longer, having your neck massaged by a man you barely know. Most memorable at a wedding

Being touched when you're pregnant, like you're public property (women do this too but most women ask)

Being grabbed by two men while another shoved his head in my cleavage.

Bum grabbing, very common in pubs and clubs

Thighs felt

Being given drink after drink, tipping them away, saying no... Being walked home, trying to kiss me despite saying no... More than once.

Being touched on the vagina while being given a piggyback

Being raped

And more

Seems VHL isn't the only thing warriors fight. 

Being a parent from a bed

We're on a beautiful half term break and I got food poisoning. A day of being in bed, in-between the inevitable trips to the toilet! 

As I lay there my now 10 year old trotted in and out, not remotely phased by my smell, lack of energy etc. She even managed a very sort outburst of defiance at having a shower. I use my firm voice in return, got up to fix the problem and fell back into bed exhausted by the effort.

I suppose the two of us are used to me being a mum that's , in a hospital, ill or recovering in a bed or on a sofa. There have been patches of her young life where I've been like that for weeks. So we did it again.

This time it was just a day.

My dad, my hero

The man I knew as my dad as a child has long gone.
For a while a shell existed where he has been.
I think though that this new dad is really rather wonderful (most of the time)
He, while strapped to an expert, jumped out of a plane two days ago. Lost a converse trainer but enjoyed it.
Why? Why not.

I explained to a new, potential friend that he started really trying again when he saw that I could give up.
I was very close.
That month felt endless.
I knew I could be a shell too.
I have it in me.
But I was saved and I live again.
So does he.
It has to be these big, larger than the disease, events.
He can't dance, so he flies.

I can't have a baby

I love my daughter, she is our surprise and delight.
I wanted more, I don't admit that often. No point.
But I get a pang of jealousy when I see the bundle of happy faces in pictures or in real life. I know it would be harder but I wanted a noisy family. We're a very controlled and happy  3. The magic number.
It's on my mind that even if I were to have more it's such a reckless thing to do. I'm almost 40. I'm diseased. Yesterday my husband almost didn't get the condom on in time.
I feel sad that it was the fear of the health consequences that have left me in fear and a secret part of me, ever so slightly thinking, ah but I'd have another one. Then I push that away and cover it with the facts.

We'd have to leave here. It would be a logistical nightmare.

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.