holding on

The difference of having this when your young is the people you've collected they are great but can't know. 

Now I'm able to hold onto people who really get it. 

I will keep holding on 

3 months

Not even all of that. 

And how do you prepare for maybe not bring and to walk again, or use your arms or become incontinent or all the things he said which are there now. 

gratitude

My daughter was in a mood yesterday, understandable but irritating all the same. I'm pleased to know that the fog of my pain isn't effecting her too much but will I ever really know how much? 

My day ended with her snuggled into my arms and me kissing her forehead as I hid my fear and tears. She clung on and then went to bed. I read my book to forget and then slept. 

Each day a gift and right now, a small torment. Tiny really. I count my blessings and try not to worry about the possibility of a future where I'm not able to be me. 

This disease doesn't let up. Over and over again, the next step towards the next step of an unknown future. I could be totally fine or really not and I could be an almost infinite range of things in-between. 

It's that, I think, that's hardest - perhaps if I was certain I'd lose the use of my arms or know I wouldn't be able to speak then I could prepare. 

But for now I'm just going to have to keep pretending I'm fine. 

Talking to my mum

 I didn't know how to say all the things, for fear of it all feeling too sad, but I got to say some of the things. 

The things I did say: 

Asher is allowed to get physical comfort from someone else - I don't want to know her (or him I suppose) 

I'm afraid of being like my dad - I need to remember to say hello first

I want Ayla to still be able to go to Japan

The ones left to say:

If... 

Crisis

Reclaiming my VHL status and making something of it I decided, many years ago, that my derby name would be cortisol crisis. 

Yesterday while not quite getting the skill of a very tight u shaped turn one of my coaches stuff. Crisis try getting lower but not leaning forward so much. My smile honest and joyful. I'm not a natural athlete - never was. I can blame the surgery for it never seeming to get better but in this sport I'm just new again and building skills. 

How cruel then that once more I'm going to be interrupted. How happy then that today I am determined that I'll get back on my skates post surgery. That will mean I suspect I'll be the only (very ameture) roller derbiest that has come back post kidney, brain and spine surgery. 

Click Click

 A while ago I began to get a click in my neck, loud through my ears from time to time, it was a new and satisfying sound. Now I'm wondering if it's that cyst. 

I wondering lots of things because I just can't imagine what the outcome will be if something goes wrong. 

The friend who annoyed me by not expressing my cancer is as real as others - you try this on for size. Cancer kills some people the cure is worse than the disease for some. But you try this- endless check-ups and fear. Anxiety founded in a real promise that something is growing in you and there is nothing you can do to stop it. The unknown of which bit of your body next, which part might not work. The urge to google and read through others posts - knowing that someone will have had a terrible experience and that that could, might, please god, won't be you. 

Hiding your real feelings from you child and quietly voicing them with your husband, mindful that he copes in another way, he won't dwell or confirm your fears head on but will listen. Wondering who you can be honest with. The futurama Head in a jar. He tried to comfort me by beginning to remind me of my blessings. I shouted (not very loudly) but possibly the loudest I've ever shouted ay him "I know how to count my blessings. I'm good at that. I don't want to now, I'm angry and scared and I have ever right to be." He was silent but held me still and I cried big fat ugly, angry tears. Then I pulled a sad face and blew my nose and we then talked more. 

I would maybe have talked to my dad, but maybe I wouldn't, he felt such guilt I would probably not wanted to worry him. I see the pain and fear and anger in my mothers face. She checks, she checks, she checks. Both of us holding it together pretending we can protect the other from our worry and fear. 

Today as I stretched out my head and neck from roller derby practice I thought about what strengthening my neck means. Will I be able to step away from this next challenge and begin to love again as I have before? This is a cruel disease that tricks you into feeling fine. 

My new challenge is to stay positive. 

It will be ok. 

Am I breathing

To know your body and to really know your body are different. I'm sure I fluctuate. 

Since the news I'm mostly thinking about my breathing. 

Am I? 

Following on from a podcast I've been using my breath to calm me, to slow down my fear and anxiety - that was for the non VHL related stress. 

Last night, through tears of fear I tried to use it again but this time I kept hearing 'difficulty breathing' as one of the things to watch out for. 

What risk then to that being a possible side effect of surgery and what fix is there for that? 

My voice matters so much to me, so much of my personality and my joy. 

My father struggled to speak clearly. It isolated him. It stopped his comic timing. I can still see the frustrated shake of his head when he wasn't understood. The resignation to give up saying it, whatever it had been. A silent tut on his taught lips.  

I am thinking too of life in a wheelchair. I'm thinking of the changes to my home. 

What will my husband become? 

Will everyone who loves me be part friend, part carer? 

To wait is to delay the possible physical risk, maybe, but waiting is mental exhaustion. 

Take a deep breath. 

Head in a box

I knew that eventually this one would need to come out. I expected it but I didn't think it would be now. I hoped I had longer. 

And now, reeling from the news I am doing what I do - thinking through the worst case for my family, worst case for me, timing, plans, plan, plans. Default coping. 

In the hour or two after being told I have imagined so much, including the following:

• stopped breathing
• Been a head only
• Told my husband he needs to put all the rails back up that were there for my dad
• been wheelchair bound
• started a head only coaching company
• Told my new job that I can't start
• Move my surgery so it isn't during the girls exams
• decided to wait until after Japan
• died (of course) 

I've also actually, called my mum and sister, WhatsApp key people, emailed the girls school and begun to look at possible time frame to explore my work options. And cried - quite a lot. 

What I do know is that I don't want to take any unnecessary risks for letting it get worse. I don't want to go through what happened with the last cyst that really nearly fucked me over. I know I don't want to live with worry and fear of symptoms- the difficulty breathing one the most. 

nerves

I hadn't realised that I was feeling nervous but of course I am. Every year, sometimes more often. Each time. Getting ready to put on a brave face. 

Every time getting my paperwork ready 

What this time? 

reunion

It started with a LinkedIn message and my caution. Then trust we talked and laughed. I felt like the 20 something I once was. He remembers me with rose coloured spectacle but it was lovely to be thought of that way. 

He was thrilled to hear I had a daughter, I'd confided in him of my worry she fear of passing on VHL, and I was equally delighted to tell him she doesn't have the gene. He wanted to know about my health. He wanted, I think, to know I was ok in all sorts of ways. 

How lovely to have someone care for so many years and enjoy the positives I've achieved. 

I felt a tinge of sadness that he couldn't confirm that he's been joyous too. 

There is always spring

There is a lightness in March, a month that all those years ago was my brother going in for his first and straight forward, VHL related operation. I don't think I remember being worried about him. I was about to take my A-level exams, I was desperate for Steven Webster to notice me. I recall sitting in the Addenbrookes Concourse, a place I marvelled at because it had more food outlets in it than the whole of Gorleston, Great Yarmouth. We talked about those then routine and silly things that meant the world. I always found him so very easy to talk to. He never judged me, well I never felt judged. I wanted him to be proud of me but there was no need of that longing or to put any real effort in to do things to make that happen. Probably because he loved me in a very simple, big brother way. I loved him back with the comfortable and not over the top adoration that a little sister should. 

I remember his kindness, his quiet intelligence and louder curiosity. He smoked and looked good doing it. Because of a rare photo I often think of him juggling. He wore chino type trousers with T-shirt and shirt, he cared about his appearance but he looked effortlessly messy. I don't remember his voice, but it was a sensible deep, and, like me, he didn't seem to have fallen into a Norfolk accent despite living by the sea for most of his life. 

Such a short life. 

One he intended to live well. I know he had experienced a broken heart. He had laughed, danced, travelled, experimented, worried, cared and loved. At 22 he had done as much as he could. I was inspired by that, but afraid for a long time that I might not be able to live a life so full. 

My big sister said once, in a rather one sided argument that she regrets, within it a list of truths. One of those truth was that I felt I had to live two lives, his and mine. So true. I feel a little sad that she was already on a set path that she didn't know how to deviate from. She couldn't take that gift of knowing it's ok to be selfish. It's ok to live your life as you want to. To take risks and to fall and get back up again. She falls, or more so, she is tripped, over and over. Bruised each time and I would so love to help her heal. She gets up, don't get me wrong, but so often it seems to cost her more than most. 

Today, just a few away from his anniversary, I'm sitting in my home, in a good place mentally and emotionally and aware that he really would have been very proud of me. I can't help but wonder where he would have been. He'd have just turned 51 and perhaps he'd have been a dad. This thought brings me the most sadness, a bit of family we can't ever have. (We are quite confident he didn't sire any unknown.) But that way madness lies. 

As I drove home from choir yesterday, a very significant song came on. I sung along and tears fell at the lines. 'I am not alone, while my love is near me' I was thinking of my dad and then him. There love is always near me. 'So come the storms of winter and then the birds in Spring again. I have no fear of time'

My daughter, the same age as I was when he died, has just rolled next to me on the bed. 

How lucky I am. 

There is always spring 

feeling things

Today I've mostly felt a little small and sad. A strange mix of emotions over the week and I'm not sure where to put the feelings. 

Someone I love said some stuff that hurt and I don't know what to do with that. They've said sorry. They didn't like that they said it. I don't think they know why they did, but I'm still finding it a bit painful to know it was in there. 

Nothing major and they couldn't sleep for the worry of how it made my feel. 

I don't know how to ask why though because when they said they were sorry I took that. 

It's rare to feel hurt. 

And with all the things and all the other big feelings this just layered into my own sense of being small. 

Like I've shrunk. 

Daren had left the chat

I was scrolling through my phone today. Looking to distract myself and then I saw it. 

The chat I set up to update people on my kidneys. 

And he's gone - I guess someone has cancelled his phone. He's really gone. 

if Trump is right...

And god saved him... Then I think we will have to admit that the ancient Greeks had it right and the gods see us as play things. They will find the next 4 years quite funny. 

We need a Perseus - we all need to steal fire. 

Fear of a mother

 As I talked to my mum on facetime last night I saw the fear she feels for me. This was linked to me saying I thought maybe I needed a change in career - that I am perhaps ready to take a step back from the imaginary race I've been on. For the longest time I thought I needed to move up to move forward and with that I could only really see one path. 

Circumstances shape me - tumours don't. I have always been furious if I think VHL is going to stop me doing what I want to do. Livid that they wouldn't accept me onto the VSO programme and full of determined rage when kidney cancer got in the way of interviews for my then next step to Assistant Head. Incandescent when I was refused a massage because the less than scientific masseuse theorised that it would squash out my medication with all the toxins too. I didn't even believe the toxin were squash-outable. 

And then I saw her face and I didn't think I was doing a dangerous job but she sees the stress and she believes that the stress adds to the tumour growth and she is genuinely afraid of me being in pain and me being less than in control. And, frankly, so am I. 

I take hydrocortisone each day - I forgot yesterday and didn't realise until I was thinking about her worry later on in the evening. I felt fine. Partly because I'm feeling a bit stronger since I got home and since I started to see jobs I could do. Jobs with a purpose and a level of satisfaction included. I could see a future I wanted. It will be hard to walk away from the holidays and the pay... but if I get lucky I'll walk towards a different chapter and will be able to enjoy something new. And although there is a little bit of me that is sad at this I think maybe it is the sunrise after a dark night I need.