A nice up of tea

 I just had a nice cup of tea and a bit of a cry. The power of a good friend, ready to let you let go a little bit can't really be measured. 

She and I haven't seen each other as much recently. I know how lucky we are that, when so much of the rest of the world is doing everything remotely we get any time at all but the quality of just popping round is endlessly important. 

I didn't let go completely because, right now, I can't. It's not so much the scan but the results. We were talking about if we might host a new years eve party. Depends on the results. I'm already in, who knows what might happen. The extreme possibility is that I need some kind of immediate intervention. Get it out now now. Best case scenario is always, re-scan in a year. 

scanxity

I'm quietly freaking out.

I'm used to a level of routine and the annual process. I'm used to my hospitals in my country and now I've got to do it in a new place and a new country.

Even booking the flights is causing issues. 

The frustration and fear, bubbling around. 

My uncle Ken

 This morning I received the sad news that he had died. I knew he was ill but it was still a shock. He was a constant in my childhood, a calm and kind man who always made me feel loved and valued. He was one of the first people I was aware of who got divorced and this seemed an extraordinary thing and at the same time no issue at all. 

He came with his stories and strong accent and I overwhelmingly think of him with a moustache. He leaves behind two children, my cousins, both grown up and with their won children who will, without doubt be very sad to have lost their loving granddad. 

The thing I most treasure about him is that when he worked, he was a funeral director and when my brother died, over twenty years ago, he brought my brothers body back home and took him safely to the church where we got to say our last goodbye. I always loved the thought that he had taken care of him, as I know he would do for all of us, and for many years comforted myself with the knowledge that if I were to follow in my brother's early fate, my uncle would, without doubt look after me too. 

I'm so very sad for all those who loved him, not least my dad, his big brother. And I see just how strange it must be that my dad has, against all the odds, outlived his little brother. The older I get and the more people who die, parents of friends, cousins, uncles, aunts, brother's sisters I see how remarkable it is that I really thought I wouldn't have my dad around now. That those who have always seemed healthy and strong have gone before, that I can see more people I love experience grief, is a surprise to me. And in the veil of sadness I take a sip at hope and cherish its warmth because I see that I may be here to know and love m grandchildren and be around long enough that when I die, my daughter will have had me around for a very long time. 

no matter what room you're in

You still feel fate dancing around you.

You still know that it can change on a whisper

You know that some people get it and some never will

You see the gap between getting on with it and getting by

I did it again

 such was the success of my talk to year 10 biology students I was called on to do it again for r 12. Such a privilege to speak to them about my experience and to raise awareness. I couldn't quite remember my list, skipped some bits and went back. 

And, almost as if the VHL fairies were aware of my good deed the scan referral I have been waiting for came through. I was amused that it wasn't a complete list, even my doctors aren't sure what I have and haven't got, had, been removed. 

So all things being well I can now move forward with booking a scan and can find out what the potential damage may be from the delay. And it made me feel strange. It was so real today. 

precision over beauty

Across the globe teachers and students are coming to terms with the prospect of another year of teacher assessed grades.

I'm currently in a bar, with two TV screens, one showing golf, one showing gymnastics. Both professional level.

The golf good holds more beauty.

The gymnastics has become a way to give a score. Impossible for me to do it. Golf, so much for accessible. 

They should both feel possible. Only one does.

And to exams. 

It's become about prescion and not about beauty. It's about collecting data, quickly. 

It's about right and wrong.

It's clumsy.

It's unfair.

It's never capable of being perfect.

craniversay

It's still remarkable to me that I'm where I am today. I remember the complete reliance on the hope that 5 years ago, they world say ok, yes we will operate. Those of you who know, know. Surgery can be booked in and yet so many things can prevent it happening. 

I don't remember the night before being very different to the many that went before except that hope, an anxious, delicate hope that I almost didn't want to believe in. In case it was snatched away.

I suspect that's how many people are feeling about the election in America right now. Almost too much to believe in, the outcome potentially saving you or the dangerous, frightening chance that they will be even more peril than before.

'I can only make one garuntee and that's I could make you worse.' 

They didn't. I woke up as me, a new me, ready to scrub off the layers that has invisibly stayed on me as I lay in the hospital bed. I know that most of that is gone. But you can't ever be the same after a prolonged exposure to fear and discomfort. I hope America can heal, move on and live with joy, appreciating what it so nearly lost. I am. 

onion under my finger nails

This has been a bliss filled week. The worry and strain of the everyday slowly disappearing and giving me space to be and feel and love.

What greater joy can there be, than feeling the contentment of slow, sleepy days, a pace that can't get boring, a moment each day that makes you laugh aloud and some softer reflection that allows for a small tear of life to quietly appear in the wind that is blowing in your face. 

And coming home, knowing that you know how to be alive and how to live and that you're so blessed to be able to do it. 

For me knowing that 5 years ago I couldn't see this future, had no concept of anything but a life of discomfort, unpleasantness and pain. 

I've been given a chance to be the mum I am. For me and my daughter this time is so precious. We have played like children, talked like adults, laughed like teenagers and argued like a mother and daughter should. 

I've had space to assess what I need to do about my body, not just the cancer but the rest too, the wobbly bits, the exterior that is starting to show the 4 decades it's traveled. It's tanned and strong, slightly achey but not hurting me, not causing me to avoid my life. 

I know my body won't let me feel like this forever, so this morning, while I pottered about, cutting red onion, getting it under my nails, reading a chapter or two of my book, putting on a load of washing and planting out the air potatoes that have gone to seed, like them, I don't know if the protection around them will last, if they will grow into more than they were, but the hope is there and the chance has been given. 

raising awareness rather than money

A colleague asked me to talk to their year 11 biology classes about having VHL. 

I was so pleased to do it.

They know me as a teacher and now they know me as a survivor and warrior. 

They are studying genetics, they did the fact bit worked out odds and then I introduced myself... 

I gave the disease you've just been working on... 

I know it meant a lot to them but it meant more to me. 

getting close to normal

It's hard to know what normal might be when you've never really been it or in it.

In a recent email to my mum she replied...

'Wow, normal is a word I don’t associate with you, baby girl!'

As she exclaimed, I just haven't ever done that. The girls that bullied me at school would throw the accusation of 'boring' at me. 

I couldn't stand that idea. If you ever choose to truly hurt me, then that's what you'll throw at me. And if it turns out to be true then you'll have cut deep. But I tend to ward off that insult. 

Toni - was tonight

I wanted to write this all at the time, but found myself unable to. I come here when I need to get thoughts and feelings out and that night, not so long ago I tried to. 

I started but couldn't find a way.

I didn't want it to be too public. I'm used to finding my voice for VHL now, the other stuff, less so. 

This was as far as I got

'I find myself here

You wouldn't have decided to do that in front of my husband'

No matter how far I've come, there is still a road ahead on this...one day maybe I won't blame myself. Maybe one day there won't be a need for me to have to. 

the next two weeks

I want to be ready to listen

I want to be able to comfort

I want to be reassuring

I want to make the necessary change

I want to support

I want to have compassion

I want to help

I want to find a space for my family

I want to find space for my friends 

I want to find space for myself 

I want to finish what I start 

I want to lead by example

knowing more than you're supposed to

When I went to art school I knew more than most. I wasn't a great artist, I couldn't draw as well as anyone else on my course and I wasn't as inspired by life, experience as the rest. I was told by one lecturer to cheer up, go to Spain.

I was 18, the year before my brother had died and that year I was due to have the same operation that, as far anyone knew, had killed him. 

Spain would be nice, but there was no cheering me up.

I knew too much and to my art professors, just not translatable into great art. I wasn't grasping the opportunity of grief I was only letting it happen. 

Why am I remembering this tonight?

Because tonight I was part of a wonderful group of women, my book club. 

We talk, book clubs are rarely about the book you've read. They are a chance to say things about your life, to express and share. You allow the topic to roam, from one shared experience to another. The youngest in our group is about 36. I think of her as young but I don't assume inexperienced. 

We talked tonight and I shared, I feel safe doing so. We've all lived.

But a couple of times I thought, oh, you haven't been here yet. This is just my road for now. You all know it's coming, but I am the only one here with the past and the predicable future of VHL. 

All of us know someone who has had cancer, had a loved one die, felt grief, been lost in life, hated a job, a boss, a family member, know what suicide can do to those left behind. We know someone even if we haven't had it ourselves. 

So why then did I feel like I did at art school? The only one, the one forging the path of the inevitability of life and then, just when I could have said, whispered or cried my truth, stopped and waited for another person. 

Because it wasn't just my space and it didn't just belong to me. I'm not the centre nor should I be. And that's why I didn't thrive at art school. I didn't really want to be the one who knew more, who'd already faced my mortality and gently danced with it rather than faced it or tried to fight it, even though I wanted to just run away. Because like a shadow, you just waste your energy doing that. 

No, tonight I knew just a little bit more, wanted to tell my story, and did a little bit. A little bit at a time. No one really wants to hear it all. 

morning after

When I was younger I told myself I shouldn't have children. I told my husband this too, he was a boyfriend back then. 

Then surprise, the best surprise and even better, despite the odds, no VHL.

Phew, dodged the bullet. 

She knows that the surprise was because he father and I got drunk, lacked the necessary contraception and didn't worry about it. We are lucky that we didn't. 

My pregnancy was consultant led and actually stress free, a few tumours grew but more importantly so she she, strong and ready to be taken out by c-section. There were risks and some complications but 13 years on we know how that part of the story worked out. 

Sometimes my period is a little late. I have a small worrying few days. Normally though it's just that. I'm not a young woman anymore and right now I have various tumours and two kidneys with renal carcinoma. 

Last week my husband and I had an unclear moment. We discussed in the morning, we think we were fine. As the week progressed my worry grew, my feeling that it would be a very bad thing to be pregnant. I couldn't stay here, could I? 

I would need to seek another solution.

I am too old. I am afraid to risk VHL for me and it. I woke in the night, aware that my period tracking app was telling me my period was 1 day late. Just one. Only one. Enough to make me cry. Enough to wake my husband and tell him all the things I'm afraid of. Enough for us to be awake and discuss it all. I've never shared the level of far I have around this. The part of me that desires another child and knowing how selfish that is. He knows my Catholic roots and he knows what I've been taught to believe about souls and life and the guilt at even considering our choices. 

I googled being pregnant with kidney cancer. 

He googled my options. 

I cried and he held me. 

I knew it was just one day. I knew I'd spiraled into a state of panic. He listened, supported and I expect felt responsible. 

I worried how my child, the teenage one would react. I imagined who would judge me. I worried about if I'd need time off work. I began to plan for a variety of eventualities. I told him about other times in my life when the idea of being pregnant had terrified me. 

Still he listened. 

I thanked him for not dismissing me, he completely recognised why I felt the way I did, and so with my sense of not being alone, and that we'd figure it all out together, no matter what and after a discussion of the reliability of the tracking app, I got some sleep. 

By noon today my period came.

By 4pm he'd decided to call our Dr about getting a vasectomy. 

I think that will really help! 

I wish I didn't have cancer

Seems to obvious to say and most days I just get on. Today I got an email from one of the Drs on my VHL team. His care and getting in touch meant so much to me. Telling me not to worry about the overdue scan, letting me know they sort out out when I can get in. 

That care, that time. I wonder if he knows just how much that means to me. To know I'm still on someone's list, that I'm important enough to reach out to. The NHS staff are all heroes in my eyes. 

I shed a small tear, because I wish so hard that I didn't have this. I wish I didn't have to convince myself that I'm going to be ok. That it won't have grown and nothing else will have and of course, that there is nothing new. 

Wishing doesn't change it. 

I wish it did. 

Private Island

 It was a wonderful break. 

I managed to switch off. 

The break from my real life and a necessary one. 

this is all forest

Here, you notice poverty as a fact of life.

Here I'm rich. Very rich.

Here Covid 19 is another part of life, a problem, more an inconvenience than a life changing experience.

My part in this is to help the local economy survive. Keep employing who I can.

Keep buying

Keep eating

Keep paying

Keep keeping

to everything turn turn turn

Today my daughter turns into a teenager.

I'm not with her, she is on an adventure. I'm so very proud of her and miss being able hold her and kiss her and see her face as we celebrate.

Being here, that's the privilege. There's the joy. 

I'm still here and so is she. 

We are still a family and we are all very happy.

How lucky we are. 

Home alone

Although, I'm not alone. I have close neighbours and the internet, friends online. But for the next two weeks I am home alone. 

I've never fully lived on my own, grew up with my family, off to university, lived in halls and then chosen friends, moved in with my mum's cousin when I trained to teach, then into a flat share, communal living space and kitchen and then into a flat share with my boyfriend, who I bought my first house with and second, then became his wife and now I'm here in this community. 

I have of course spent nights, weeks on my own but this is the first time in a long time when I've been been alone like this. 

So far so good, I'm enjoying my space, my sense of self. I'm taking the time to look after myself, to enjoy the time and freedom to reflect and enjoy where I am and how I am here. 

Here, despite the world pandemic, despite the uncertainly and despite the niggling worries, is safe. 

I intend to use this time to prepare for what I can control, reflect on my ability to be a good teacher and leader and to administer some self care. This is a time to be selfish in a sensible way. 

I've created some expectations of myself, no caffeine after 12noon, plenty of water. Fruit for breakfast and enjoyable meals. No alcohol unless it is in food and listen to music, recommended by those I love. Some exercise, mainly bending and a gentle walk once or twice. Reading in the sun and a sensible time for bed, rise when I awake. 

As the term ends

I am hopeful that we can wave goodbye to online learning as the only method of teaching. The faceless, dry and often delayed method. I miss my students, I miss seeing them and helping them learn in person. Just a few days left this term and then the long holiday. 

The world can change in a few days, so hopefully the month and a bit ahead of us will provide some more hope and more information, that will make the possibility of opening a reality. 

I am living in hope. 

I'm good at that.