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.