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

Fuck off to Disneyland.

My mum and I would wonder when I would get my...fuck off to Disneyland moment.

Your cancer needed to be terminal.

But we never really know. And it will come back, without doubt. So we realised, we don't get to cash in and fuck off to the life long dream.
Mine is not and never has been Disneyland. But it seemed the most popular choice.

Today, as I watched the clouds over lake Malawi and let the wind cover me in a smooth coolness on the boat that took us from island to island, and as I looked at my new friends and beautiful little family, I realised, I've done it!
I've had my 'life is too short' escape.
Malawi is my Disneyland.

2019 will have some surgery in it but I'm determined not to let it spoil this escape.

More rain

Well, it is the rainy season.
Unlike the refreshing power of the rain here, VHL comes time and time again. You know it will show up. When? You can make a good guess and that is... Too often.
I'm trying to enjoy this moment and having the never ending support from those I love, and love me is helping.
The rain that is beating down around us tonight is, according to the locals, unusual for this time of day.
The reocurrance of kidney cancer is frustratingly normal and yet it beats down.  Hard and unrelenting.

I love rain

The simplicity of it.
The truth of it.
The way it does its job
Well done rain.
I applaud you.
Job well done... Keep it up.

Well, stop for a bit while I enjoy a bit of sun, tomorrow will do.

You've cooled and nourished us, me.
I do like the rain.

Postmum Pat

Two letters arrive at my old, old, old, old, old, old address.
They contradict the emails I've had.
They send me into the state of the unknown again and they make the evening frustrating and I feel sad and confused.
I'm now back in the doubt and so despite feeling I knew what the plan was, it's changed or has it?

I have cancer

And it's one of the good ones.
In the last month I've heard of two men who have prostate cancer.
Oh, one of the good ones
Kidney cancer isn't normally considered one of the good ones, but if I'm being positive, it is for me.
One day I might run out of kidney. I might run out of both.
But not yet.

Phones on a wall

I remember the phones on the wall. It was a day in March. A month, that until then held no significant to me and will now forever be, the month.
I was aware that I should tell people. I was old enough to have people of my own to tell. I don't recall how I paid, but I stood against the wall, in amongst the wall of phones and called someone.
I told the person on the other end. He's brain dead they think. He's dead they think.
And I recall being aware of the momentous event and my place in it. Small and sad.
Nothing more then.
I was surrounded by people who were leaning against that wall of phones. Some with good news, some bad, some mundane.
All with someone to tell.
Today I have a wall of people. I lean against them when I need to tell someone.

It's always

It will always be there.
This doesn't go away and never will. Stoic and able to comfort those who need it.
It's fine
I get tumours
Shut them down
No sympathy required
Those that know a bit more, read it... I don't want to dwell
I can't
I can't
I can't
And when I do - who wants to listen?
Very few
And I included myself
I don't want to listen

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.