off to church

 to go with my mum, it's not a place I feel I belong anymore. I get it and I am grateful for what the church, and by that I mean some of its people, have given me over the years. 

I still pray and I still feel a connection but I don't know if that's ingrained habit or faith and perhaps both. 

I am saying thank you today and asking for guidance. 

near to all clear

 the simplicity of it

all stable... the best news someone with VHL can get I think

the immediate telling to all the folks I know care... and then I wonder how much I should share. I'm rare. I told twitter. I thought I might be able to build more of a community on there - not so much. Be told not to minimise and misunderstood at times. I don't think they see more than the snapshot  - much like some people in my real life. 

And of course today some of that crash you feel after the 'good news' The letting go of the tension you hadn't fully realised you had been holding onto. 

And then... well then the next scan right... in less than 6 months this time because I had to wait so long for this 'as near to all clear' as I get 

My daughter asked me this morning 'what would you do if they told you it had all gone?' 

'get them to check again.' 

how many times do I talk about waiting

 I am good at it, distracting myself but my goodness this wait is very long. Scan in July and still no definite answers and information. 

I feel like I'll be due another scan before I know what this one really means. Hoping it's not 'a little bit late' by then. 

I'm a really good person

You know when you just think... Now despite my doubt, despite my faults l, despite my fear

Actually

I'm, like so many people I surround myself with, I'm a really good person.

I'm not perfect

And that's the proof 

building and trying to ignore the worry

 the scan... the size and the 'lots of white on that' feeling. 

the disc was sent off a little under a week ago. When will I hear, when will I know? 

and then... what will it mean? 

I hurt myself the other weekend, I hit my right side on a shelf, it hurts, it's getting better. I have had to talk myself out of deciding I've done permanent damage. Popped the cyst! 

It's on my mind. 

3am worries

 I gave my physical scans to one of our biology teachers, we held them up to the light to see what they looked like. 

'That bit' I pointed to the large vivid white circle where an adrenal gland probably used to be - 'that would be the...' I stopped, I didn't know what to call it. cyst, tumour, cancer, so I mumbled a little and talked about MRI scans and contrast. I couldn't remember 

gladioli - no, gladiminium, errmm, 

it's this Gadolinium contrast 

I of course then couldn't really get the blob, not the only one either - out of my mind. A ticking clock, definitely growing but maybe not bad stuff growing. I wish I was an expert. 

The wrong time to decide

 this is a place where I have been so very happy, a place that feels like it saved me. I had a really good chat with one of my favourite people yesterday and she knows me so well. We are torn, we are undecided, but I think maybe it is time for the next step. 

I worry that what has kept me so healthy and well is this place, the air, the lifestyle, the calm. I just don't feel as stressed, even when we face turmoil over COVID, staff issues, devaluation, none of it gets into my bones like it did in London. 

The chat helped me reflected on what it was about London and the truth is I haven't meant London, I've meant my last job. A place that I at first thrived in and then almost drowned in. I never gave myself the chance to say just how horrific the brain tumour was, just how terrible that small and endless month of hospital was, how I wanted to ruin my own life, all that made me feel safe because then I was in control of the disaster and yet, in the end what we did together was make a big change. It needed to be big.

Maybe now is the right time to acknowledge that we need to see how we fair in the real world. Maybe make some choices on how we live again. Maybe. 

I'm torn. 

More cancer - not mine

 I see her as a reflection of my story in some ways. We met at an NCT group, our children just weeks in age apart. they still laugh and play together now, even if it is on Minecraft and 8000km apart. 

She had a brain tumour removed not that long ago and has just had emergency surgery to remove cancer in her bowel. 

It is perhaps what my story could have looked like if I'd been the first in my family. But because I'm not, because of that clever Dr, who asked my dad the right questions and joined the dots, I get scanned and screened. I get to find out slowly and before (usually) it gets too dangerous. I have the luxury of waiting and not always knowing but at least I do. 

I want to wrap her in my arms and tell her it's all going to be ok, and it has to be, for her and for her boy. They got most of it. She'll do chemo. She is one tough cookie. I wish she didn't have to be. 

So I will wait - happily lucky that I get to

Thank you VHL alliance

 I waited until I was back from my holiday, despite the temptation, to ask for the scan report. It came back within the hour. That was impressive. I read it and compared it to the last full report I have. 

Then I had a little wobble. 

I sent the report onto my Prof's secretary, with the sing song tone that says - I don't want to bother you but I want you to look. And I got a reply within the hour. Not an answer but I know I've been acknowledged and now I will have to wait. I can do that.

Then I had a little cry and got a hug from my husband. We talked it through, best to wait. The report didn't seem very thorough, the MRI machine wasn't as high a T number as the others, they could be looking from a different angle. I quickly calculated a thousand different outcomes, the best being  - we can still wait and the worst - well... going back to the fear I felt in 2013. I even began to think of the cost of more scans. Would my insurance cover it? I have savings - I can use those. When would be a good time of year for surgery. Then my calm husband held me again. Breath and just wait. 

I thought about telling my mum  - but she worries and I don't want her to, so I looked again at the report. And did a bit of googling, before finding my way to the place on the internet I should have started with! 

Kidney Cysts, Renal Cell Carcinoma : VHL Alliance

this bit

Cysts are generally not considered sufficient cause to operate, even if large. In the rare event a tumor is present in the wall of a cyst, it will be important to watch the size of that solid tumor, not of the cyst.

and this bit helped 

Tumors typically grow in steps, with periods of little to no growth followed by periods of rapid growth. Looking at tumor growth over a number of years, NIH has found the average growth rate is 3-4 mm per year. Generally, growth greater than 5 mm over a year is considered accelerated.

and so the left one has gone from 13 x 12 mm to  29 x 23 mm cystic lesion

no news on the right one

I'll wait

just wait

scan connoisseur

I know a few MRI machines well, one I consider I've had an on going long term relationship with, although I have been seeing his brother on the side. I've had a couple of one night stands with some, holiday flings really. 

And then there's the first, you never forget your first. In my home town. He was new to the area, my family knew him. I haven't seen him for years. 

long life milk

Living somewhere else is about accepting long life milk

where will I be scanned next

 Who knows, looking unlikely that it will be here. But I do need to have my 6month one. 

I know I do, but only to ease my mind, I'm sure of that. 

Today, I sat in my pjs with my husband and friend and we were talking about life's path. I have lived a very full and happy one but I still see a long future. I think that is why I feel frustrated by a small hiccup in the road. Very small, it will resolve but it occurred to me that asking me to wait for something I want isn't a good idea. It's not so much that I'm running out of time and more I need to use my time. I don't like being bored. I have been happy to slow down these last few years, take things as a pace which has helped me connect with my daughter and get to know different sides to my self and others. But I'm restless now, I need another thing and I don't want that to be VHL related. 

In a different world

 An old friend's wife died yesterday, she was young and had been told 10 years ago she was probably going to die of cancer. She was remarkable to keep going, I only ever saw her brave face. I suspect her husband and son saw many more faces. I wonder if she had days when she would cry in the shower, scream why me, get angry at the universe, lie awake terrified of leaving her son behind. I expect so. I live knowing that I'm being monitored and I've come to a sensible realisation that this isn't the same terminal as she faced, just life limiting. 

Just. 

I don't know how they did it, but they kept on hoping and kept on. 

Now her husband and son need to learn how to live without her and that's what breaks my heart. 

once I couldn't keep my eyes open

I remember it well.

You don't forget that

There are moments in life when you want people to do you justice... Today I hope I did that. For others. It matters

oh your dad died too

There is a club I belong to. Newish to me. The dead dad club. I understand it's not the same as the dead mum, brother, sister, friend, child club. 

It's still a thing, an unexpected one, although I knew it all. I thought I did. Yesterday someone I know, not quite a friend more than an acquaintance, joine to the dead dad club. 

I sent my habitual concern

What I'm waiting for is the next one

blossom

In my garden a tree that I don't normally notice is blossoming. It's subtle and beautiful. 

It's making me think of VHL. I'm not sure why. Maybe the unexpected growth. Maybe the sense of dormancy and new spark. It's the way it's snuck in, almost unnoticed. 

It's a clever disease and I need to remember to keep watching. I need to check in. I need to keep looking for the changes. 

And while I do, notice the beauty. 

silence me

I've been told I talk too much

Often

I've been silenced more.

I've been told I over share

Often

I've hidden so much more

I've been told I over react

Often

I've been restrained more

who knows where the time goes

If I'd been able to, that would have been the song at your funeral.

Because, because it's the first one we really learnt together, we sang it at my sister's first wedding.

We played it many times again and I can even almost play it on my guitar. The one you gave me that sits here... That'll have always.

This song means so much

This song reminds me of your soft gentle reassurance that all will be well. Even when they just weren't, you didn't let me see that. 

I miss you

I didn't know I would miss you this much

I'm looking out over a cloud covered sky, listening to waves crash into the side of the room I'm in, the beauty and power a welcome reminder of how blessed I am. I'm in a little bit of pain and I just offered a small request up. I call on those who should be 'up there' knowing that if they can they would definitely help. And I remember that my dad is now there too. I'm not used to him being on the list, nearly a year on. So I ask him. Then I do my superstition of, oh but wait, what if he's only allowed to help a little bit. I should save this for some bigger stuff. 

And then I think of his suffering, he just didn't really complain or burden me with it. I didn't know really, except of course we did. And that soft layer of missing him bubbles up and I feel sad. I want to just check in on him. My dad. Gone. 

pain in the arse

It is getting better. Healing. A slow process when you are going through it and every so fast on reflection. 

This time, a break is a time to rest and sleep. I'm happy with myself for managing lent so far. It's been interesting to have been battling with my body though. It's not behaving as I'd hoped. 

My arse, my armpit and my finger. 

But I was reminded yesterday by someone I hope dear, that it's not fighting me as much as it could. We've had rougher patches. 

She's going through a battle with her body and she doesn't know what and who she can trust. It reminded me of those times I haven't known if it's all really real. When the cure feels worse than the disease. The lack of pain or disability but to be told... 

It's time. Time to cut you open, time to intervene and stop it. Time to take the risk. Time to sign the yellow paper.