it was the night before...

1999.

I sat on a sofa with my sister in a room I knew well.

We were holding hands and contemplating the New Year. We sat in silence for quite some time. 

Time.

2000 was the year of my first craniotomy. We both knew what that might mean.

The night before 2020 is fast approaching and I am hoping it's a clear year.

For me and my family that means no operations, no deaths, no growth and nothing new.

Could we hope for a whole decade?

We always hope. 

I can see a million stars

It's almost the end of 2019.

Time keeps fighting me.

But here I am counting a million stars and knowing what joy is.

I'm one of the privileged million, billion or more.

I don't deserve it. But I am it.

Here and now, luckier than most of the planet.

What absolute bliss. Even the richest person on earth can't continuously feel this. 

The stars keep up with me tonight and if only time could stand still, just a little longer. Here and now.

Now.

Here.

The beginning of the end

For people like me, those of us with a preexisting medical condition the result of the general election was not only sad and disappointing, it was a moment of genuine fear.

We rely so heavily on the NHS and despite it straining at the seams and the waits, the delays and the under staffing, it is ours and it saves our lives.

It has saved my life in the big obvious ways and in the small ways too.

What will become of it now and then us... the first to go I suspect.

First they came for our boarders and I did nothing because I was a native
Then they came for our NHS and I did nothing because I was healthy
Then they came for our schools and I did nothing because I was confident in my children's success
Then they came for me there was nothing left to take

End of term and time for family

It is going to be a relaxing break, we have plans to wander and roam and I know we are going to rejuvenate and cherish this time.

Our Christmas tree is up and presents sit happily underneath.

Avoiding Facebook

My country is about to make a big decision and potentially so is my place of work.
I made a decision to temporarily stop following brain tumour, cancer survivors and VHL things on Facebook.

I hit the snooze for 30 days. 

I have too much in my head to think about that right now and I realised that I'm inundated with updates from strangers. Right now that's not healthy for me. I need a break.

I really need a break and in my small community that is hard to do.

If I could right now I'd go and spend a weekend at my mum and dad's. I'd go alone and I'd enjoy the solitude of the drive and the initial pampering from my mum and then I'd also enjoy the inevitable reality of their lives. Of course that wouldn't be escaping VHL, there in the adapted house that retains the memories of my childhood, despite the new room for my dad and the wheel chairs and scrapes, it would be my VHL. My story, the one that is most real to me.

Telling new people

As a teacher this is an annual event.
I don't gather any new students or staff around me and say... to understand me here's the list of scars and tumours, resected and remaining you should be aware of, but maybe I should.

Part of me thinks that no-one need ever know but there are stories, moments, medical wrist bands that signal a difference, and recently it's been the mental health side of my journey that has been most valid to express. Not least to acknowledge that I'm fine with my lot, today but there have been days where I wasn't.
It's a useful vulnerability as so many of us have the hidden battles and unseen scars of a life full of fear, anxiety, depression and stress. Seeing me strong and seeing me weaker is normal. I am a leader and I think there is so much importance in owning your faults, failures and struggles.
Here I am trying to do my best and sometimes I fall short and so do you. So let's try again together.

as luck would have it

Here I am. Alive and kicking.

Out with friends and coping with all the mundane reality 

My crainiverseary... 

Photos on your timeline

How many pictures do you have on your timeline in hospital?
Between me and my dad I have quite a few, the familiar lighting and flooring. The bed sheets and the scars.
I began to take a record when I took a picture of my dad's head before he was going in for more surgery.

For us both they tend to take away the scar that went before and replace it with a new one, a new part of our story.

What they take away belongs to us, a part of the process and journey and we're stronger for it., perhaps, yes in fact it is. My dad's body might not do what he wants it to do anymore but he's no less strong.

I am strong. 

when your confidence gets knocked

It's been a strange and difficult week at work. We've been inspected. 

I know I did everything I could during and I kept my integrity. I wasn't sure what that looked like in this context. Now I do.

It's been hard because I've seen others keep theirs and then one who hasn't. 

All this stress and emotion made me feel like I was disappearing into the fear of VHL. It's time like this when my resilience drops and I worry.

Pins and needles in both arms, light headed and tired. 

It isn't over but I can get up in the morning. 

Recovery is a long road

I don't have post traumatic stress disorder, I do however flash back to those days in hospital and the overwhelming fear of being there again.
Recovery of the body is slow and not always complete and recovery of the mind is even slower and I'm sure never complete.
I am doing fine, I am happy most of the time and I can keep the enemy at bay with a mix of love family, friends and a whole lot of work. I enjoy worrying about work and how to improve the school I work in. I enjoy pondering what thing I can potentially fix or change so that the students in our care have a slightly better experience. In the grand scheme of things I wonder if I make much of s difference, but I make some and on days like today, that's enough.
I am there for people, I like that too. I suspect I've missed some signs and missed a few cries for help, but generally I think I do ok at that too.
I enjoyed being a coach the other day, I enjoyed saying yes to a worry and easing someones mind. I enjoy knowing I'm part of this world.
I let all this take the place of the small and persistent voice that reminds me of how my body could change all that and how easily my life could become a long and drawn out experience of asking for help, request and demands. Like my dad. Although over time he does some of those smaller things, it takes him so much energy to write a short email.
I hope he knows that when he reaches out it matters to me

I think I'll tell him.

70 today

My dad turned 70 today.
This is somewhat of a medical miracle.
I wonder often how he feels about the life he has now and the life he used to have.
At 70.
Did he expect to last this long?
To my fellow VHLers someone getting to 70 is important, is an achievement and something we think gives us hope. But I know how hard everyday must be, how difficult the routine and not just for him, but all of us.

Especially my mum. 

When someone else is ill...

My husband is unwell, I know this must be, because he has taken to bed and despite trying, he has had to stay in bed for two days.

I'm quite good at being there for him, well, I'm here and I check on him.

He keeps apologising.

He needs to rest, his illness is a virus, the Dr says the cure is rest.

He is dizzy - I thought, brain tumour.

He said I had it worse, I did.

He better get better.

Coping and worrying

I keep it in check, but I am a worrier. Having am almost teenage daughter helps me focused. My mum, with the bet of intentions told me many of her worries, I could see it on her face and I think I was trained to worry.
I don't want my daughter to worry like I do, but perhaps it's a genetic flaw I have passed on.

I hadn't realised how worried I was about my husband until I saw him starting to get better. He is recovering and I've cautioned him not to move too fast. I could do with him being well, but he isn't and I'm getting on with that, Happily, here our community or neighbours and friends make it so much easier to cope. Little things like a tin of beans after a long day and the comfort of a cup or tea and a chat.

But worried I was, I don't like seeing my strong man unable to get up.

It's made him remember, or recognise how horrible it must have been for me. Not that he ever doubted it, but until you've been dizzy for more than a few hours, you can't really understand. He knows how much worse it was for me, he was the helpless one, sitting by  my hospital bed, trying not to show it on his face in the first few days, then no longer having to hide it as I wouldn't open my eyes. I could sometimes hear the catch in hos voice when he was encouraging me to eat or convince me to have a scan I couldn't face. 

Cancer of the elbow

I know I'm not the only one, but every time my body does something unusual or different I imagine the worst.
Last night in the comfort of friends sofa we joked. I felt the relief of articulating my irrational fears, my elbow hurts.
Cancer of the elbow.
You see it was true for me that - you have hiccups you have a brain tumour.

I've convinced myself on so many occasions that I have something new, unrelated to VHL. I await the diagnosis of labial cancer, I won't get cervical cancer, I'll get something rare and not at all connected to VHL.
I have been aware for a long time that life can throw you anything, good and bad and as I accept my privilege and good fortune, I accept the unfortunate and rare too. I don't dwell too much and I don't let it get in the way, but it is there, lingering and insipid.

Knowing your surgical anniversary

I don't, well only one of them.
The one that meant my baby girl came screaming healthily into this world.
That's the only one.
I've notice that the other 7 are not dates I can recall, I have a rough idea of months for some of them and I think, given some time I could give am accurate year. But all in all I don't know and I certainly couldn't post about my 1 year, 5 year, 20 year anniversary.
Mind it's taken me all of the years I've been married to get that into my head. And that's because my mum and sister always send me a text so I'm getting better at knowing that month.

The significance of this?

I haven't got the mental capacity to celebrate because there will always be another one. And I have the strength to know that each day is a blessing and an achievement.

So happy anniversary to anyone who has survived and thrived.

And to those who are getting by.

Having a cold

I have had a cold, it lasted a week and I was so very grumpy about it.
I'm not good when I have a cold, it irritates me so much. I get angry and I feel very sorry for myself.
I am good at tumours and cancer... well so far
but a cold, useless.
It's to do with feeling my energy is being wasted and my time is better spent recovering from when I'm really poorly.

Fear and uncertainty

In the UK we are all experiencing a prolonged time of uncertainty and waiting.
What will happen, what will it mean and when.
Most people feel they have no control or power to change anything. A waiting game.

I think you can see the parallels here...

The UK seems to have VHL and I hope the invasive cancerous tumours are cut out.

'I love you' doesn't even touch the sides

I am very lucky to have true and real friends.
I feel loved and supported in ways that are hard to express and 'I love you' doesn't do it justice.
I've discussed unconditional love over the last few weeks. My mum and dad give it to me.

It was always made very clear to me as a child, 'I will always love you, I may not always like you or the things you do, but I will always love you.'

I have found and cherished those friends who I love unconditionally and I feel I collect them. Bring them into my life but perhaps in truth they have collected me. Kept me as close as I've kept them. It hasn't mattered how long the gap or that I don't remember certain details. Usually the names of their family, it matters that we care and the certain knowledge that we will do all we can to protect that.

It means that I walk my life with confidence.

Thank you wonderful friends. You are a small and precious group of people who I treasure and value.

Fragility

I visited my uncle this week, he has moved into a new home, much nearer one of his children. He has never been a strong looking man, a small frame in many ways, soft features and a gentle nature.
I know him as a kind and generous man, I don't agree with much of his politics but we have happily skirted around this, we have theatre in common and we have enjoyed meeting to go for a number of years.
Now he is frail, and is doing his best to not show it.

Along with his change, I saw over the time with my mum and dad that they too have become more fragile in many ways. Unable to do as much, unable to see the positives, unable to communicate and unable to see much joy.

My dad asked me to try to stay positive, no matter what happens.

We were all fragile at times, all easily bruised and occasionally the self protection made each of us snap, angry, lack empathy. It was a hard time, it was difficult to see and it was time I'm glad I had.

Holy day of obligation

My birthday went well, I stuck to my resolve and it felt good.
I went to mass, and as uneventful as that used to be, this time I bumped into one of my old teachers and had a nice chat with the man in the pew in front of me while the holy ones went for communion. He asked why I was't going up, right there, I knew, "you're not catholic", we don't ask we silently judge. I was right, of course.

The words have changed a bit since I last went, much more 'with your spirit' and it felt a bit Handmaids Tale. I wondered if I would feel differently, it feels comfortable and safe in church. I know it, I know the routine - I was annoyed they have changed some of the words. The pattern and routine of mass was such a familiar part of my life for over 20 years.

The first reading made me smile, it sounded mystical, something about dragons with 7 heads and more crowns and then the second reading was one I remember hearing, about Mary's visit to Elizabeth. I was amused by the last line. 'And she stayed about 3 months.' So ordinary, so like my life, 'oh we're staying for a couple if weeks. The sermon did its trick, the priest related the Gospel, the feast and the readings to us, to our lives. How we have accepted the struggles since we were Baptised. Umm, nope, I didn't, I don't recall the event, let alone the acceptance of the struggles of life. My mum has lost a son, she lives a burden and she is suffering, we didn't choose this.

Later that afternoon my friend came over, I've known her since I was 11. We know each other well. It was a lovely normal catch up. I recognised how now, that in our 40s life's struggles have been with us both. Possibly in equal measure.

And in the early evening, we went for a  meal at our local Indian and it was good, I sat next to my dad, I helped him, I made sure he ate and didn't spill, I tried to keep him in the conversation loop, but it felt forced. He fell asleep a few times. I wasn't sure how he found it, I was afraid to ask. I look at him and I can't help but see a possible future. How will I manage it, will I let my daughter feed me in a restaurant?

He wouldn't do it if he didn't want to. I know that.

More wheelchair experience

I've learnt not to walk by his side now, one squashed foot later and I know he needs more space than last time.

Wheely bins on pavements are a huge frustration.
parking on a dropped curve,
not cutting back your hedge - please do it
rubbish  - it gets caught in wheels
passing in front of the chair - go behind it isn't that hard

and more
but I'm ranting

Going back to my original home

Not tomorrow, but the day after I go home.
The original one, well nearly.

I had a very happy childhood, I don't have any bad memories from my earliest years. I remember love and joy, space and family. Our dog and seeking attention from my brother and sister and sometimes mum and dad.

I've been told we didn't have a lot of money but I never felt poor or that I was missing out, because I wasn't and I didn't.

My parents gave me that and I will forever be grateful.

Naturally things change, I got older and life became more complicated but that start was the best anyone could wish for. I started off happy and optimistic and that habit won't go away. Perhaps that is why when a few years ago the unhappiness was daily and my daughter was suffering we changed things. I'm so glad we did. Me and my little family took decisive action.

I am happy and content almost all of the time these days.

And perhaps that is why I'm nervous about going home. When did they stop being happy?

Of course we laugh and enjoy life as best we can but there is a deep sadness that remains. It's easy to think it began when my brother died. No parent can truly be happy again after that. That would make sense. And how can you be happy when you have been forced to live a life that is less than you anticipated. My dad, barley able to feed himself, carers in and out of the house, limits on daily activities. Not the retirement they had in mind. My sister, still a stones throw away, bound by her belief that she has to be there, to visit, to listen, to send her children around. The negativity that surrounds their daily grind. I can't look.

Is it wrong of me to want to escape that, to have gone so far away?

It is in no small measure a selfish thing to do, to have gone away. I didn't know when I set off to start a life in London that that was what I was doing. It was the biggest step I'd ever taken. And each year on my brother's anniversary I knew I was so very far away.
I got on with it. I went to work and I had a normal day and I called home. It is a day they let themselves be openly sad. They allow it to fall around them on that day and don't try to pretend and on that day I pretend the most. I pretend that it is any other day, a normal day and it is so far from it.

So I'm going back for my visit, I'm feeling anxious and steeling myself to absorb what needs to be, or take up what I can while I'm there. I intend to listen more than talk, I intend to sit on my dad's bed and listen to music with him. To walk with my mum and the dog, to get my mum to do something new and different and to try and laugh a belly laugh, but not at my mum's expense (cheap shot). I intend to go to mass with my mum and hold her hand. I intend to encourage my daughter to talk to my dad, as best she can. I hope that by doing that, even for just a short time I can bring some happiness into their lives. And as I type that I know I will, by virtue of being their daughter and having come home to visit. And then I will go again and leave a gap.

Reaching out and making connections

Sometimes it doesn't feel like reading about other people in the same situation will help. However, when they understand, are strong and weak, capable and know what it means to fall apart it can be such a comfort.
A complete stranger and their story often helps me feel more normal despite my defect.

Through my recent delve into Twitter Claire reached out

auntymbraintumours.com

Here is my first guest post

It's  her about page... you'll see why we connected

Hi, I am Claire Bullimore

I am the author of A Brain Tumour's Travel Tale and Founder of Aunty M Brain Tumours.

My goal is to raise awareness for brain tumours and support any person who has or had a benign brain tumour.

This blog is here to give my opinion on a number of this that I feel with be helpful to a person who is affected by a brain tumour.

This blog is part of the social media platforms under Aunty M Brain Tumours. People can connect on the Aunty M Brain Tumours Facebook Page or Twitter. There is also a private Facebook Group where you can speak to others and support one another.

Aunty M Brain Tumours was set up in 2011. Social media was only just getting going, and there were very few places to find support online for brain tumour sufferers, or survivors unless you searched the web hard.

Why the heck would I want to get involved with brain tumours?  Well, because being told you or your loved one has ‘a brain tumour’ is a life-changing event, whether it is cancerous or benign.

I was told I had a brain tumour in 2008 when I was only 25. I had a 10cm Intraventricular Meningioma and had to go through surgery to have it removed. I know the struggles that come with this devastating diagnosis and the life-changing effect it can have on a persons life.

Claire's MRI Scan of her brain tumour in 2008

I started Aunty M Brain Tumours on the 23rd May 2011. It was my 3rd Cranniversary. I wanted to celebrate my 3rd year since my brain surgery (craniotomy) and start something new.

I set up a facebook page to connect with others. That grew and I was soon on a number of other social media platforms with over 16,000 followers. In 2013 I was invited to be a radio presenter at a local station which was via podcast and was able to have a show dedicated to people affected by a brain tumour. I interviewed a number of people and you can listen to their stories HERE

To show I am not just talking the talk, I also walk the walk. You can find me in a number of publications raising awareness for brain tumours. Such as The Sun, Choice Magazine, Best Magazine and Bella Magazine.

I went on a UK Book Tour to promote the first book and was able to do this through Crowdfunding. I met so many wonderful people See Photos

I am here to inspire and motivate you. Let’s do this journey together.

Claire

x

time and choices

This is the long holiday, a time to catch up and spend time with people.

Understanding the time line

We've spent time catching up - it's a lovely phrase and a lovely thing to do. Sitting with family, making sure we all know the main events of the last year or so, the big ones to come.
My cousins have been in life for a very long time and I find it strange still to know they are grown up and adults. They will always be my little cousins.

Yesterday we talked of my dad, they have spent more real time with him in the last year than I have. I thirst for their experience and want to know the details. Their perspective. I think it will help me next week when I am with him and when I see him again in all his disability.
I find it so hard to see anything else and part of me is a little ashamed of that.
My excuse - I don't want to see that reflection in my mirror. I comfort myself that that won't be me but I know, logically and emotionally that it could be, different but the same.

I don't say it often, but yesterday in response to a common question about plans, I reminded my husband that both brain tumours have caused issues in an unplanned way, both were not in the routine scan phase, both caught me and everyone else, Drs included, off guard. I checked my little girl wasn't in ear shot when I said it. I need to protect her from unnecessary worry, she's like me that way.

I have a headache today, and my husband has noticed I'm guarding my left side more. When he notices things they feel bigger. I've felt a change in my blood pressure. But then I know that in recent days I've changed my routine, done more exercise, haven't had any drink for a couple of days and started taking my hydrocortisone more regularly. I'm looking after myself and yet I can't sleep well and I'm more worried than before. Too much time to think, too much time to worry and I do.

How long can my current dream last? Anyone's guess.

I cope by making a variety of plans, by putting some money aside so I know I can pay for a stupidly expensive flight and operation if needed. I plan for next year, 2 years and more. I pretend I know what I'll be doing in 10 years time but that always stays vague, and usually - be a Head Teacher. It's a realistic goal and one that keeps me focused on what I think I can do. I'm not sure I want to be there, a big job and stressful. I think I'd be good at it.

Real life keeps me going.

Vision Express

They mean what they say, into a small room three hi-tech machines and within 15 minuets of arriving I've have 4 eye tests to a level of sophistication done that my 9 year old self would have only thought a sci-fi dream world.
I know about eye tests, if you've look at previous posts you'll know. I've been though the horror days of yellow dye and pinning my eyes open.
Yesterday I was a good citizen, I let the new options (more than one) look into my eye and the post graduate who had never seen one in a real patient. I was a teaching tool.
I enjoyed it. 
I felt useful.

Another small step

Yesterday I had my words published on line. A small article in a small charitable publication.

I shared it with various people. A step I wouldn't have taken a year ago. I think I'm getting close to the idea that I'm not boasting. I'm not seeking attention for the sake of it. I'm sharing.

TV guide

There are often differences, in generation and place. And there are three memories of similarity too. All rolled up into shared experiences and conversations.
I'm drinking wine with my father-in-law and he gives me the TV guide.
I haven't looked at one of those for years.
I feel the warm comfort of the past reminding me of my own father and a time when you chose what to watch ahead of time.
I feel loved and cared for by this simple gesture.

The importance of a day

Today is the last day, so is tomorrow.
The day after will be too.
And the next one.
The last day means something.
As a teacher, I repeat this year on year.
We have so many 'last days'
They mean something.
They are a rite of passage and real and unreal.
There are days that have more significance than others. Memories that last and fade and linger and disappear and are false and true.

Here and now.
Gone and forgotten.
Forever and never

4 years

It seems so long ago, but looking back it was roughly 4 years ago when I felt poorly enough to tell a Dr and a Dr admitted me into a hospital.
It had been building and I didn't know. It's a common experience. To suspect and so often try to reassure yourself it's nothing serious.
On this overnight stay I simply needed fluids, my salts were low.
Fix that and off to go.
That happened again about a month later.
3 months after that and I had a craniotomy.

That's why it's so hard to be calm about a new symptom and why I try to be aware.

I'm healthy and well.

I'm planning on staying that way.

I know it won't last forever

Belonging

I think it's part of the human condition to want to belong. An intriguing side effect of my step into going public, slowly, cautiously into a place where I can share I feel like this might be a place I belong.

I'm not a doctor but I suddenly feel I'm not a fake. I'm declaring my status as a patient. A front facing user. This is my experience. I'm not new to this, I'm not in training. This is my area of expertise.
I belong.
Here

a story about one of my hemangioblastomas

The last blog post I made before being admitted to hospital for the hemangioblastoma was about 3 days before I went in.

I got through that day, a sad and horrible day. I had told so many people about her death, a student, and then I tried to carry on.
My last day at school - My boss was out and I had sat on a chair for the entire lesson. My colleague knew my face was 'not right' and kindly offered to do my lunch duty.
I called my GP to chase the information about the cyber knife.
I cried and I knew I had to go home, I hadn't felt that tried in so very long.
It always felt better if I could just lie down.

Even today, if I feel especially tired I worry something is going on in my brain.

I still marvel at just how I got out of my friend's car and had my bloods done, how the next day I even made it as far as the end of my road and I sometimes drift back to those hideous moments when I was unable to move. My daughter dressing me, helping me clean my teeth, how I asked for my husband to come back from his business trip early and, thank god, he did.

And then in the first hospital. I had been lying down for a long time, still and rested. I felt like I'd made such a fuss, no cortisone crisis, not feeling that bad. There are moments when you recognise the brilliance and simplicity of the medical process. It was my blood pressure that gave it away, you are not fine.
A crash from lying to standing, the nurse, reaching out his arm to hold me, fearful I was about to faint.

My hospital having me in, the sedatives to help me move from bed to bed, I could still walk a bit then.

The worst of all moments, the unknown and the real crash, my body began to go into shock, the blood retreating into my internal organs, the sudden and complete spread of pins and needles and the loss of sight. The panic as I couldn't find the alarm
HELP HELP ME HELP
The bumbling Dr who couldn't find a vein - no wonder my blood had been sucked towards my heart.

I begged to be catheterised, the idea of getting up again too much to take, the need of a bed pan and the change of myself.

The MRI - the fear and my genetic nurse, a woman who made me feel less alone and knew she had to call my mum.
36 years old and I needed my mum.

Then a wait and another transfer, just a few miles away but I didn't know then how long I was going to wait.

I remember my mum's fierce instance that even touching the edge of the bed was horrible for me. And despite having never experienced it themselves my mum and husband knew -this isn't like her.

3 weeks of progressively unbearable dizziness. But bare it I had to, no choice.

Despair.

Infections, bloods, a drip, a mouthful of food and only for my daughter, I kept going for her.
I didn't want to be alive even though I didn't want to die.

It was the hardest time in so many ways.

It ended.

The NHS was there for me. And I mean the people and the experience, equipment and care.

I am worried for  myself not having it in the future and I worry for everyone else who might need it. And my heart pounds at the injustice of life that some people don't even get insurance.

I've gone on Twitter

I have a short bucket list these days, I have achieved many of my ambitions and there isn't much left that I think I have a huge amount of control over.
One thing though, is to be published.
I've written a few things and I hope one day something is officially published.
So with one of my favourite people, over a bottle of -her Prosecco - me Corona talked about it. She, you see, is a proper author. I'm very excited by that.

She suggested some things, and one was this, this blog. To send it - to get more followers and at the time that seemed right, felt like the right idea, given where I was and where I've been.
Back home, in the cold weather and the reality of everyday life I am doubting if that's a good idea. I've looked, there are so many stories, so many voices. Why would mine be useful?

I'm linking up some ideas and the Twitter account @OfDefect is live... and I've connected with a couple of people, which is rather lovely, but I don't know if this is the way I tick that item off my list

I might wait.

The honour

This week I've been blessed to be back in the arms of my husband and being able to hold my baby girl, who is almost as tall as me now.

And I've had the honour of being a teacher. To get back in the classroom and enjoy that part of my life too.

I've been honoured to have a place at a table at the yr 11 prom and see the pride and joy they have in themselves. I know
My part in that has been small but what a pleasure to know I can continue to do that for the next generation.

Here I know I'm a guest, and I've been honoured to meet new people and be welcomed and loved. To be made to feel I belong.

Honoured too, to be invited to dance and to do it. To laugh and talk and dream and plan.

Returning

Returning sooner than expected and it has been a beautiful thing.

I haven't seen or felt a single moment of resentment or doubt, just pleasure and joy, genuine happiness that all turned out to be good. This time.

I returned before expected once before, also with a kidney cancer related issue. This was the one that got to me the most. It was in the year I had intended to attempt to become a member of SLT somewhere, anywhere, well not quite I had some parameters but it was the right time, I was Head of Year for Year 11, they would be on their way into 6th form or other parts of the world and I didn't fancy starting again with another year group. I wanted the step up, I knew I was ready and then at the same time I couldn't move forward with the knowledge that cancer was in me. It was my first experience of cancer, my first sense that the cells in my body were not just in an awkward place but that they might try and eat up my good cells, that they wanted to spread that they were truly an enemy within. Torn by this knowledge and beginning to break from it I had explained I wanted it all taken out.
Get it out.

And then I had my consultation with the surgeon, and his flippancy didn't change the reality that this was major surgery and not an easy one at that. The location, right near the renal artery made this very serious. I picked a date that had minimum impact on work on my students and I signed the triplicate form anyway. I had no choice.

I sat having some bloods done, and a well meaning nurse said something about preparing for the worst. I was shaken and afraid and suddenly felt my time was genuinely limited.

As is my way, I began to prepare and ignore all at the same time. I applied for jobs regardless and wrote a diary to my daughter. I checked my will and agreed to events post surgery, I did both but I was convinced that the date given in December would be my last.

I wasn't myself, those of you who know my husband will know I can't have been, he was worried about me, he showed it and said it. I was worried about me. I set my cover and

I arrived, gown on, cannula in arrow and R written on my side, the white compression stockings adorned my feet, the fog thick outside and the hospital lights harsh. I had said my goodbyes, written my  final letters to my nearest and dearest and given important instructions, most important of all, don't let her forget me.

And then, we can't do it today, there are no beds in HDU, you can't go straight to a ward, we'll re-arrange. The fog of that cold December morning had hidden other peoples fate from view and the emergency surgery list had increased. Someone else had taken my place and I was so relieved. I hope they survived the day and I knew now I would.

I dressed and numbly told my mum, sister and husband and we went to Sainsbury's cafe for a cup of tea. I'd been nil by mouth so I had food too. And as the realisation cleared like the fog outside I found myself with a life that needed living. Once more I'd been given it all back.

I took a couple of days off and then I went back to work. That time the relief for me was far greater than those I returned to, and three months later I had the surgery I knew I needed, but this time I knew I wouldn't die.

My return this week, to my community has been better in many ways, I find myself able to enjoy it more. I know that I will need the current cancer sorted at some point but it feels a long way off and this year I don't need to make any steps up a career ladder, I'm where I want to be. I'm content and happy and I feel so lucky and blessed to know that is true. I've returned and I've found I'm accepted and loved, more than I could have hoped for. Perhaps that what peace feels like. I like it.

The thing with wheelchairs

It's so easy to forget the mountains he climbs each day. As an abled bodied person most people don't see them.

Today, in the rain we set off for the drs, I forgot to get his hat and we got wet.

We move slowly, he is a polite pavement user, he always, always stops for others to pass. He can't manage the chair well, his fine motor skills are as effected as his legs. 

I was reminded of the frustrations of where the dropped curb is, wheely bins left out, dips and cracks in pavements. Simply crossing the road at a speed that he feels comfortable with is hard and at times I felt a bit dangerous, I was there to stop traffic, those is cars going significantly faster than the 30 or 20 miles indicated. On our journey which was less than a third of a mile, took us well over 20 minutes and when the path narrowed I stood in the road. I was glad the long cars that often stick into to road from a drive didn't get scratched, and I watched in admiration as he carefully, patiently navigated each part. I felt empathy and pride. 

I wanted to put something on Facebook about being more considerate of where you put your bins. I didn't. 

Then later in the day I stepped backwards onto a pavement and was nearly mown down by someone on a mobility scooter, obviously happy with their fine motor skills and not so worried about the 20 mile an hour speed limit on the road. 

The room of my childhood

We moved to this house when I was about 8 I think, this wasn't my room straight away, my big sister had to move out before I got it.
But this room holds so many memories, so much joy and pain and fear and anxiety and some love.
It's been painted and changed at least 4 times since I left it and yet I know behind the paint on the wall that now stands on front of me, mine, my sister and my brother's names remain. I don't fully remember us doing it, stood together paint brushes in hand and painting our names there for what we assumed would be eternity. It didn't cross our minds, then, that we wouldn't have all our lives to be reunited in this house, in this room. 

His room is still filled with parts of his life, as short as it was. Certificates, his art work, his stuff, even his old TV. 

In this room, my room there is little left of me. It's the guest room now. I have a draw where I keep my things. However the view from my windows is subtly different but less changes than the items in the room. The most striking change is the appearance of the extension built for my dad. To accommodate his growing needs. IT sits heavily below the window and blocks part of the view.
He hasn't seen this room for about a decade, unable to navigate the steep stairs.
I'm here because of VHL. I'd still be with my little family, getting my baby girl ready for bed and enjoying an hour or two of us time with my ever reliable and ever rational husband.
I'd probably not be thinking of all this and the devastation the disease has imposed on father's body and his relationship with my mum. I'd probably be able to forget his daily physical struggle to do the simplest of things and the anger in my mum's eyes as she tries to be patient and not snap.
I'd definitely not be thinking of the steady stream of daily carers who come to do some of the difficult jobs. Their clocking in and out, the ease and routine they have in my childhood home. The intimacy they develop with my father and the distance my mum puts in-between her and them.
The carefully constructed barriers she places so that it can still feel like her home.
I'd be free of all that and if it weren't for VHL so would they.

Just a tiny drop of milk

I've been making my dad tea for over 30 years.
He knows I know how he takes it.
Today I asked if he wanted a cup of tea and he said 'yes please, with a tiny drop off milk.'
I smiled.
I put the kettle on and thought about our relationship. It's good to see him but hard to understand him.
I then realised I knew about the milk but wasn't sure what type of cup I should use.
That had changed, maybe... It hadn't.

On a day I feel blessed I thought this a true blessing. Being able to make my dad a cup of tea the way he likes it.

He's off to a music festival and last week he went on a trip up a very large hill.

He is back to inspiring me.

And I'm surrounded by blessings.
A cheese and ham roll
Fresh milk
My bank card working instantly
The London transport system
Pate
Crumpets
A really good washing machine
Central heating
Consistent internet connection
The NHS
Next day delivery
Take away
A trip to the cinema

My mum
My dad
My sister
Her children
My childhood home

Laughing until my face hurts with my family

My health

The sun

Contact with my other home

The love and care and support from so many people

Their positively, compassion and prayers.

I have three homes.

I am blessed.

Tales of the Unexpected

I was not ready!

My head is still spinning but I have a stay of execution. I could bore you with the explanation but I'm exhausted from explaining. The long and short of it is no surgery, for now and maybe now for a long time.

If I die before I wake

Now I lay me down to sleep.
I pray the Lord my soul to keep.
If I should die before I wake,
I pray to God my soul to take.
If I should live for other days,
I pray the Lord to guide my ways.

Father, unto thee I pray,
Thou hast guarded me all day;
Safe I am while in thy sight,
Safely let me sleep tonight.
Bless my friends, the whole world bless;
Help me to learn helpfulness;
Keep me ever in thy sight;
So to all I say good night.

Doing some prep...

I'm off to he VHL clinic today. I'm preparing for it in the way I've done for years. Reminding myself of the names of staff I'm likely to meet and writing out the questions I want to ask, the things I need to check and information I think I should impart.
I'm writing it all down in my little book that I've used for years too.
I've gone over old medical letters, checked my facts and dates, ensured I know what my ideal scenario would be given the situation I don't want.
I'm ready.
And, as with each year I will be ready to hear whatever news and be ready to cry. I have tissues.
I'm ready to leave the room and then think of the questions I wish I'd asked. I'm ready to make the polite jokes, do the polite effort of saying how my dad is and despite the fact it is far from fine, I'm ready to say, he's fine. I'm ready to add to the list and I'm ready to find out, have number 14 grown, is number 12 the same and this time I'm ready for them to tell me about my kidney cancer.
Will I get to keep living this life I've carefully protected and clung onto?
I'll find out soon
Well, I'll find out where I am no, because with VHL one day is just that and who knows what tomorrow will look like.
And that's true for every one on this planet, but people like me know it.
Really know it.
and
I
am
ready

A time to cry

On a day I've held back tears, not because there is shame in them, but because I needed to keep stepping forward, I needed to feel I could face the next few minutes, I'm struck by Theresa May's final show of tears.
I wonder if she knows how empty they look.

I'm one of them

Today I said this

Speech wise, every moment of life is worth forgetting and remembering. You get to choose and with each step you take you keep deciding.

It just came out of me and it made me smile... The ability to be 'profound'
Funny really

Doing what you love

Last week we hosted a 'I'm going away for a bit but I'll be back' party
It summed up so much about what I love in life.
People.
I love connecting people.
When I see people I love find the parts of others that I knew they would love... That's satisfaction. No jealously. That's not me.
I see the joy of connection and commonality.

How many times can you die?

I sent an email yesterday to my work colleagues. I was my usual matter of fact, this is what this is, self.
What occurred to me, was the frequency of this notification. My sense of fraud.
The jeopardy.
She won't die.

But who has to do this?
Who lives this... This cycle, this endless expectation of pain and discomfort.
Even if I'm as fine as I am now.
How many times can I be close to death?
But never there, never enough.
I've read about convicts on death row. The inhuman treatment they receive. The mental torture of being aware you're going to die but it keeps being delayed.
Today, I feel little that's what VHL does.
Today I'm getting ready for this, tomorrow I might find out I'm properly fucked.

How many times can you know you're going to die?

Mortality and immortality

Once you really know one you can't forgive the other.
I've been acutely aware of my mortality for most of my life, which seems to breed a sense of immortality.
How do I keep sane?
Worry.
Over think.
Stress.
About things that matter but not as much as my mortality.
Or as much, because I give them that value.
Working with children helps because, as Whitney Houston said... They are our future.

Whisper 'I love you'

I've always said it, often and to all sorts of people. I give my love freely and it means many things.
I know that, as a child, I was able to say it so often because I was secure in its place and in its reciprocation. My parents would joke with me about the frequency of my declaration.
As I grew older and threw the word around, I hoped it would serve me just as well. 

Not always. 

It was sometimes misplaced and remained over used.

I grew to be more cautious with it, with men, with those that found it a trap. I felt the certainly of my feelings but didn't get it back. With my choice of husband or still felt that I gave and gave and he cautiously returned my voice. So often I wondered if he did, love me. He did and does.
For a time I stopped saying it. I couldn't do it with the honesty I once had, with the naive abandon that I took for granted.
Today, a life time on I whispered it softly, knowing I meant it. Knowing its true complexity and hoping the reply was  heart felt as my journey to it had been.
I will always love easily.

I will say it often and to many people.

Today I am happy to be in a place that accepts it and me for the time before and the time to come.

Luck, choice, hard work

This term has been hard.
There has been so much variety and I have seen an unacceptable level of poverty and privilege.
Here I am.
The holidays loom and I don't quite know what will keep me busy.

Keep my mind off it all.

Touching death

I cried in the bath yesterday. I cried because I know I'm going to miss part of my daughter's life.
Tonight I cried because I felt like I'm going to miss more of it.
I have to realise I can't be there always.
Her dad will be fantastic
Her dad will hold her and love her
And he'll tell her when she needs telling
I'm so scared I'll miss it all

Knowing tragedy can strike

My newest friend and I have something in common. Many things.
But we know tragedy can pop up regardless of the day, joy or season.
My mother would often bemoan the grokkles that visited our home town of a summer.
They think they can't die on holiday... The anecdote continued, but the point was, you don't expect to die on holiday.
My new friend and I know, that's not true.

In fact, we often leap to the tragedy in our minds. We see the terror and grief that awaits, just behind the casual smile of a swimming pool or car journey home. We understand we have no control over the fateful day we may say, I knew something was wrong... We'll say it because we feel the potential daily. One doesn't experience inexplicable grief at a young age and then go back to blissful ignorance.

No, we do our best to ignore the continual threat of the unexpected and, in our eyes, likely repetition of pain.

So we acknowledge it, push it aside and great it, with a great deal of respect. And then, we do our best to ignore it once again. But only because this time, happily, we were wrong.

Ex pat

Being an ex pat is the most ridiculous thing to be.
We're immigrants.
We have the extraordinary experience of being here.
I'm not sure how we get to term it differently.
Humph

The push and pull

I want her near me every second of the day.
I want her safe in my arms, a place she can't stay
I want her to know my love is in her skin
To keep it there I must being to let go

Letters to my dad

something unexpected and rather wonderful has begun to happen. My dad, when he has the physical and emotional energy, has started up a real conversation with me via email. 

He says things and I reply. 

I love it, I love him asking about my thoughts. I love hearing his. I was reminded the other day how when he and my mum had spilt up and we would have an afternoon together, how hard it was to talk, let alone communicate. That's how I remember we started to talk about and cook food. Something we both enjoyed and it gave us a way of being together. 

I hope this conversation continues, I can love this father and eagerly await his responses, questions and thoughts. 

This is my most recent reply... you'll have to guess what he said because that's between him and me. 

I don't go anymore, mainly because I think organised religion isn't for me.  I think I do have faith, or perhaps hope. I hope there is another step or stage, I really hope it's got some things that are better than this one. And I suppose it is more wishful thinking. I feel the church gave me some really positive things but mainly a bad thing, guilt and with that a level of insecurity that is very hard to shift. I suffer from very low self esteem that isn't something I carry openly, I come across as very sure and confident, but I sometimes wake up with an almost crippling sense of shame and self doubt. Then I have a word with myself, and try and get on with the day. 

Over the years I learnt to protect myself  from myself. the psychotherapy really helped with that. I surround myself with people who get me and love me unconditionally. I wish my sister was one of them but she confirmed at my birthday party that she doesn't think very highly of me. 

So  - religion makes it too hard to be positive and I don't think a the god I was told about exists but I want to believe there is a spiritual element to us and this life and then maybe another one. 

Sad and angry

I've been both this week.
News that a friend was suddenly dead and by suicide was hard to take.
I would love to be at the funeral as I know thev love that works pour out from everyone.
Her life had had so many difficulties, and some of them so close to my own experiences that she just got me.
We meet via a choir and when the choir spilt we went to different ones, but not once did that mean we didn't respect each other.
We became friends because she was open to me, open to learning about me and I her. That's what friends are I guess.
She knew what it felt like to have a body that fucks you over.
She knew what it felt like to be in hospital while you're children observe all that you're going through.
She knew the value of psychotherapy.
She knew what being betrayed felt like.

She also knew how to fight on. I can only guess that the fight became too much or that she was taken over by the pain and fear of depression.

I'm so sad she couldn't stay with us. I'm angry that she's gone because I don't want her to be. I want to hike up that bloody hill and see her next time I'm home. You take it for granted people will be there. And these moments remind you that won't always be true.

So I've been angry. The universe has pissed me off.

A list

When did I start doing things?
It was before my brother died. Then I carried on doing things.
In a very rough order...

Drama wise I was in various shows as a youngster, did plays, directed too
School shows and local Am dram
Learnt judo for a while
I sang songs in assemblies - composed by me and my mate
Orchestras - lots of them
Local choirs - with solos - lots of them
Art exhibitions
Sang in church - solos a lot
Played in music competitions and then as an adult was a judge in the same competitions
Started a youth club
Representative for East Anglia youth assembly for the Roman Catholic church
Joined bands - backing singer
Fronted my own band - Kismet - sang covers all over Norfolk and Suffolk
Sang our own original stuff
Sold my own art - lots of it
Recorded a CD single
Went to art school
Worked in a young offenders prison - helped direct a production of Cinderella
Did a degree
Did a PGCE
Did a masters degree
Did an NPQSL
Spoke at City Hall London to advocate for better education around domestic violence in schools
Lead a teacher Union rally and spoke to the assembly about why education needs to change
Wrote some books - unpublished
Advocated for several young people
Performed in a few murder mystery spoofs
Moved to Africa

If and when I remember other stuff I'll add it

I'm proud of all these things
None of these things are about VHL