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. 

speaking....

I think I claimed being raped about 4 years ago 

I'd always thought it had to be violent and sinister. A stranger in a park. A moment of ripped clothes and torn dignity. A cloudy figure who jumped out and took.

It was, almost that. But I knew him and at the time, I was drunk enough to believe he loved me, and old enough to tell myself I'd consented.

Sometimes when I'm nearly as drunk as I was that warm summers afternoon I convince myself I'm over it. I've understood it all.

I tell people about being a rape victim.

You're always past tense. Raped. It happened. The implication, it's over.

It never is. It's always there. 

Tonight I told my husband I loved him and as he took me, I trusted him. The biggest compliment possible. I genuinely consented. As much as I ever can. There will always be part of me that isn't sure.

My body creates things I don't consent to. I am angry with it.  How dare it. Such a betrayal. 

Why tonight?

I said out loud that I'd been raped to people I know and like. I was drunk and empowered by their care. It felt true to say it. It was true. It was my past. But now I'm worried. Because what if they felt uncomfortable. because they might feel uncomfortable. 

Always worried about it.

Getting it all out.

I wonder how many of us don't know how to feel about it. 

Black Lives matter

I've been learning, 

I thought I was at a good level of, not being a racist. I think I'm definitely up there with the, I' not actively racist people. 

I also thought, maybe I was quite good at not being unknowingly racist. 

But the events of recent days and weeks have reminded me of m=how much more I need to educate myself. 

It's not enough to have good intentions.

It's not enough to speak out against the obvious. 

It's not enough to recognise your privilege 

It's not enough to share posts

It's not enough to tell your child, this is wrong, we don't agree with this

I have to educate myself, I have to listen and allow myself to have been wrong and to learn more. I have to be willing to be better than I am. 

I'm going to try  

she isn't here

Like a lot of the world right now, I'm missing my mum, She should have been here, we should have been sharing my life and loving her face as she saw what I've been seeing for the last three years.

She's not, of course and I fear, now never will. But you never know.

And the chances are she wouldn't have felt she could come now as with my dad's possible diabetes and now the news he's been booked in for an emergency MRI, she would have been so very torn.

I am wondering what his next few months, years will be like for him. How will he manage this new set of symptoms and will they even operate? Can you risk a man with his disability to go in for an operation, and that's before any level of risk with COVID 19. What anaesthetist would take that chance?

Something will one day kill him, we're none of us immortal and he has lasted far longer than anyone ever thought possible, tougher than a bull elephant my dad.

A spoon full of sugar

I always pick up when my mum calls, especially if it's a strange time of day. I'm waiting for the news. Shed called yesterday and although it wasn't 'the' news there was more news. An update, a keeping me in the loop.
They suspect my dad has diabetes.
This struck me as another cruel blow. When your life consists of a sad and slow routine, one of his few joys is carrot cake, a sweet moment at the end of each meal.
For now, and who knows how long, he has to cut back on sugar.
This next thing, this is cruel.
VHL just is cruel.

more than enough

I'm not sure when it started, but often I do more than enough.

Cleaning

Contact

Care

The best people in my life I measure by a knowledge of, I am enough.

I don't have to do anything.

I do because I want to.

Because I can.

The only exception to this is my child. I have to actively stop myself doing too much so that she doesn't become a spoilt brat. I'm instilling independent worth. While, I hope giving all the love and attention are needs. 

Unconditional love. 

I've been given it, I've craved it and I've thrown it away. 

So when I doubt my ability to give that, I end up giving more than enough. 

inflicted by honesty

Saying how it is

Knowing who's listening

Acknowledging the difference

Be playful if you can be

Consider what you say

Am I private?

What you say can make a difference

Speak

Speak

Speak 

Fat Bastard

Had one of those days. Came home to a messy house, a dismissive daughter and an absent husband. 

Decided to lie in bed an read a good book. 

Had a little cry and got warm.

Got a message from a friend and felt a bit better.

I told my husband what was on my mind. He listened, didn't talk. 

Then husband cooked a lush dinner, daughter came and cuddled me while I finished the good book and we watched a silly film while I sipped a glass of Fat Bastard.

And I thought of you. My friends who know me.

I am blessed. 

And I thought of how brilliant it will be when we drink a bottle of it together. 

And now I'm listening to husband huffing and puffing at the online poker game and his frustration at his own playing.

And it's making me smile.