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. 

more of his eye

Because of my mum I think, I haven't tried to connect with many other VHLers. Some people find it useful to find connection on the misery of the disease and I suppose hope to find hope too.

Then tonight I noticed him watching a film with one eye shut. Makes it easier to watch when one eye doesn't do what the other one does. The same, the two of us. Not a big thing, not a big deal. But still a commonality. 

I know it meant more to me than him. Because I saw a thing I do because of VHL and he's doing a similar thing because he's got a thing. 

2 years ago

I went in for kidney surgery - my second, my first with a robot. 

I thought things would be looking up after that. And yet no, 2 strange and unsteady years. I'm hoping that it's now a time for good things. 

VHL - leave me alone for a bit please. 

What's silly

What's silly about Christmas is the sense of occasion. The pressure for it to matter. The day. The tradition and the food. And, when you expu it the polite acceptance of it all. 

Today the joy of singing and silly was just marvelous

 

judged

Ummmm

Feeling safe in your own home 

Judged 

Finding space 

I think that's what family should feel like, not judged, just loved. 

Ummmmmm

Not just mine

 It has been an interesting experience seeing my normally very healthy and well out together husband have something more than a sprain, go wrong with his body and him navigating the NHS services and having 'real' treatment. Being the one in the waiting room, sitting in the chair. I of course did this for my dad often and we used to go to clinic together. But this isn't hi, this is him. He was tense, a little worries, a bit sad I think, he thought he was the picture of health, apart from the binge drinking and the slight lack of exercise but overall, strong, fit, vegetarian. And now his body isn't behaving as it should and he needs more monitoring and it's interesting to witness, how he, the successful non worrier, the all will be well man, take this change. In his stride in many ways, but interesting that he is kinda worried. A nurse said he's been a brave boy and he was by far the youngest person sitting in the waiting room for his eye to be injected. Unusual at his age they said. I tried not to keep comparing to myself, inwardly I did, but this wasn't about me and so I just did my best to empathise and check he was ok. And we both knew we were grateful that the NHS had come up trumps again, working at it's very best, speed of treatment, kindness and efficient action. His sight may recover, it now hopefully won't get worse. He described experiences I've been through and I smiled gently and heard him. Only once did I hear him worry out-loud about if something went wrong with his other eye. Only once did he voice fear over something that might not happen. He's human after all. 

I couldn't say your name

I sang one of our songs today, it was strange and wonderful. The audience got it, I gave context of the joke in it. It was very well appreciated. It was different - he played piano. We didn't do the harmony the same way. You weren't there. 

I gave you credit but I couldn't say your name out loud. I wouldn't have gotten through it if I had. I practiced saying you're name on someone earlier and didn't get far. We wrote it over 25 years ago.

Nothing will ever replace you. But I hope you are happy I sang our stuff. I might do more. 

Love you and miss you

oncology

It's a word you know, when you know, you know. 

At 19:23 on a Tuesday evening, just as I decided to sip the last bit of wine offered by my in-laws - I check my phone. Not expecting much. Perhaps a little love from one I love, perhaps an excited emoji from my child who I get to see tomorrow. But no. 

An appointment I'm not expecting - oncology. My husband intends to comfort me with, you haven't had any scans or anything.. His mother beats me to the reply - yes she has, an MRI just last week. 

Me, pulling the tears in, no, it can't mean anything. Out loud - it won't be that I've got cancer. Her face, my fear and his logic. 

No, because my surgeon said it wasn't cancerous, as expected an hemangioblastoma. Ummm. Well why then? This isn't part of the routine, this is a different ward. This means a day off work. This is not expected. I repeat - not in my expectations. 

I try not to let the worry creep in. 

Now what? 

Can I call and just check... I think you're inviting me for a thing I don't need/expect. Probably a waste of money for all concerned. I have clinic in January - I'm very good at waiting. I don't know who wants to see me and why. 

Who are you? 

What's this? 

Oncology - not a word anyone wants. 

new MRI

Adding another one to my list. The hospital is snuggled into the streets of London. A smaller place with art on the walls and good enough signage. I was earlier than they asked for but still after the sign that said - open 8AM. I could hear then behind the shutters - we all could, those of us who had risen on a Sunday morning. Waiting. 

The time clicked on easily and quite soon the next bit. The form. The questions about the form. The necessary checks. The description. The technical issues. 

The short wait. 

Repeat questions and checks above. 

In - not changed... I really like it when I don't have to put a gown on

Canular in. 

Into room and lie down. 

Think of Malawi.

Almost fall asleep. 

Injection.

More banging.

Done.

Out - canular out.

Then the hardest but, trying to find the best way home on a Sunday. 

missing

Grief, that ball bouncing around, hitting and hurting. The graphic of that circle starting small and then getting bigger. I've only thought of it as one ball before. But actually there's loads, loads of circles, for different things and they hurt in different ways. This evening I've suddenly been hit by my Daren one. Missing him deeply and painfully. Missing my little girl softly and securely. Missing what could have been with someone who I now know in a totally different way. Missing my job security. Missing my life in Malawi. 

But I'm not alone. 

it will end

It is 3 calendar months. I have swum and lifted weights. I have got to a stage where I'm not always aware of the pain. I'm traveling to art therapy. I'm feeling like I can tell the pain might I've day not be there. 

I have driven for over 3 hours in one go. 

I don't feel tried from it in myself although my neck still does at times. I know there will be an end. Or I hope when a sense that it's got an end. 

Visiting

 The tables turned, me finding the right ward, asking 'do you need anything.' half knowing that question involves more than a simple answer. Sitting, seeing your friend put on a brave face, watch her tell a nurse she's well when she's just confided she is in pain. And then, saying the things, doing the bits, offering to get stuff, move stuff, help with sheets. And then watching her fall asleep, grimace on her usually joyful face. And sneaking off, knowing how annoying it is if you've fallen asleep to be woken but taking a small parcel of guilt with you that you haven't said goodbye. 

I tried to judge what would be useful to say, I decided on a reminder that this will change and the pain won't last forever, while still acutely aware my pain hasn't gone yet and it's one hell of a long journey. Those, seemingly statutory 6 weeks until, spreading into the longer, perhaps more subtle things that never leave you. the scar, the discomfort, the worry, they memory of no memory and the fear of it all having to happen again. 

I walked out of the familiar smell of the ward, same wherever you go and into the air of London and the tube, home to my safe place and my man. Knowing she can't and knowing she isn't even sure if she wants to be home yet while definitely not wanting to be where she is either. 

hospital

Surgical review today. Feels almost pointless - except I'll maybe get some reassurance about the ongoing pain. But I'd fault just keep trundling along with it. No fuss. 

a book

I've just finished a book that's made me think and feel. 

I usually read to not do those things. 

But I also loved it and just want to fast forward a few months to a time when I think I'm going to be well and happy. 

I never normally want to wish my life away. But today I am not looking forward to my daughter leaving. I'm feeling like this next little bit of life is going to be sad.

I am feeling sad and unsure. 

I don't like it. It's not who I tend to be. I don't think.