wanting to be like everyone else

 When I was a teenager it felt like everyone else had started their periods and I hadn't and I was laughed at when I said I had had one but not another one, accused of lying all sorts. Then I got them and they are rubbish as everyone knows they are.  Now I feel like everyone else is on HRT and going through perimenopause and I keep wondering if I am. I don't want the bad stuff of this either. And I sort of just want to be like everyone else but I'm not. My body is different. It has done things others don't. 

Bone

 The bone hasn't grown back - rescan in 6 months. It wouldn't mean too much I expect if I didn't want to play sport they way I do. And 6month in the world of VHL can be nothing or everything, most often, more wait and see. 

It was on the phone, not that it makes much difference to the once off the phone and digesting the information you have questions. And now, no longer in contact with the Dr you just muddle through with previous experience, Google and a bit of common sense. None of my questions are big enough for an email to anyone who would know. But they will just sit unanswered until get to ask, it doesn't matter anymore or something supersedes it. 

feeling happy

With disease like this is important to acknowledge the good times. My neck still hurts but not as much. I'm content and enjoying the fact that the last set of scans were as normal as I am going to get. I'm ignoring eye man. 

I'm going to go and do some exercise in a bit. I'll do a bit in the garden later. I want to remember these peaceful days. 

I woke up next to a brilliant, kind and caring man. I'm happy he's my husband. Yesterday we had a lovely day together. Next week we'll go away together. 

I'm a lucky woman and today I am holding that tight. 

CAT scan

 My god they are quick. At 10 months post surgery (and actually I thought it was more) I'm not quite as good as I was before but the pain is a lot less and it fatigues less. I had the CAT scan, in theory I'm  not supposed to have them because over a life time it would be too much radiation, but I simply couldn't be arsed to get in touch to tell them so I went and had one, the 3rd in my life. So I assume I'm fine. 

So fast - took an hour to get there and took 3 mins! 

the pain of another

 She holds so much pain in her heart, and I can't help but think the faith she has is part of it. Where some find comfort and joy, I feel she only finds judgment and exclusion. It must be so hard to find joy when you believe you  deserve to be punished, that you can never atone for the sins you believe you committed. It doesn't even matter how many priest say she has, how many times she is told there is nothing to forgive, she just can't believe it. It grips her potential, it holds her back and it hurts her.

missing the sun

The sun is on my face as I sip tea. Grateful that I'm on half term and that there's some sun at all. I miss Malawi for many reasons and not least because of the almost constant reliance on the sun. 

I read once that short-sightedness is, in some cases due to a lack of sun in childhood. Feels like that could make sense. So as I closed my eyes and let the sun sink in I wondered if it could help the tiny bit of growth in 10 years. Apparently - my letter says I deny any sight change. Odd and irritating word choice. Also annoying that I've agreed to the treatment plan. No I haven't. You've talked and not listened. I don't agree to you giving me a drug. And you could apply but it's currently a waste of your time. Spelt my name wrong too. 

grief ball

My brother grief ball hasn't hit for quite some time. But it did today and I missed him so very much. 

guess the VHLer

I don't know what other things the people in this space might have fallen to them. But I reckon that of us sitting here are all guessing who has what they have. How 'well' we are. How disabled do you look and is that because of a tumour? 

Did you lose that eye first and then found out about this or did you know and it's inevitable? 

fasting and other advice

I have clinic today. So perhaps when this regular potential life changing might happens my disease is more on my mind. Tits night then explain why, with 2 relative strangers, a woman at choir and a TA at work I've said more about me when asked my recovery is going. 

One listened with care and interest and reflected on how I am accepting, impressed that I came across as close the three Buddhist ideal she strives for. The other asked if I'd tried fasting. She'd heard that helps and stuck to this advice when I explained it was genetic. If only the Drs knew! I almost told her about my 3 weeks of starvation level not eating when the cyst was crushing my brain stem. Kept hydrated and enough mineral stuff in the form of tablets and the odd mouthful of something. That didn't change the tumour. But of course I smiled and thanked her and made my excuses to leave. 

I worry that I could find myself monitoring my food too much, taking away the joy I find in food and suddenly being someone who stresses about what I eat and drink. I don't think that is how I want to live. 

Let's hope my day is a good one. 

You can only work with the body that you arrive with

 There's a lovely, lively lady who does roller derby with me, we're both just as useless as each other at skating backwards. She has been so kind and thoughtful about my return. And she says that, and that's all I've been able to do. Tears when I feel lots of feeling, because this body isn't the same. 

And I've had some mind wandering about what the impact will be if I need more surgery,  because that will keep happening and I can't keep bouncing back and this time I still haven't. 

And then the hiccups, most days, once, could be 'normal' could be something on my brain stem. That's the thing with VHL, who the fuck knows. Could be all sorts, but as unlikely as it sounds, that's not a leap of logic. It's VHL logic. 

sigh 

Rolling back in

 It was on my list of recovery goals, and today I went back. Much more emotional than I expected, each time I referred to the length and difficultly of the recovery compared to other ones I welled up. The team were very supportive and kind and I did feel like I was slower, wobblier and I didn't get through the full 2 hours, but I did it. My neck does now hurt a fair bit but hey... better than not doing it at all.