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. 

my bum hurts

VHL sucks, I'm glad I get scanned, but I know I'm happy to put them off, until the doubt gets in.

This week however I have a non VHL related medical issue that I'm living with and it's nasty. So I've self diagnosed, self medicated and now I'm at the, why don't you just go to a Dr stage in my head and then quietly and stubbornly replying; I don't want to be in a hospital. It can wait, it will sort itself out soon. 

The fact I can't sit down for the pain should be shutting that other voice up. Nope. It wins. E v e r y time. 

Same with my current broken finger which looks odd... I just don't do Drs unless I have to.

Ummm... What is have to? 

spring and winter

It's that time of year. In the UK the sun is making more of an effort and here is raining, lots. Here the nights draw in, as much as they can. 

Here feels right and I can't quite imagine not being here. I'm needed and I'm fulfilling a role I love. 

It's that time of year when I wonder more about my brother. I don't have the same questions of my dad. 

I have the questions of me.

I usually say if I become a Head Teacher. I've been trying out saying, when.

My husband sees that potential and I think I do too. 

Some decisions to make.

happy birthday

Each time, each time, each time for so many times. 

I wonder and I know there's no point

But I wonder

seeing your mum again

I was telling my friend Tabitha about my mum and how wonderful it was to see her happy because she was doing what she does best .. helping the vulnerable. Those who don't know how to use their voice. The people who are scared, or scared - are those two words spelt the same? 

I'm not quite sure why I mentioned her age, but she lit up. She didn't know that my mum is 70. It was like she saw a future she didn't know could exist. 

My mum inspired her.

My mum inspires me, I'm so proud to call her my mum. 

I hope she keeps making a difference because that's what she was born to do. And in my own way I'm following in her footsteps. 

My dad was an inspiration too, he kinda had no choice. I was worried I might have lost my mum to his illness. I think we nearly did. But I see her again. I see her recover. I see her finding herself again, after many years being a person who she was obligated to be. 

The joy of joy 

Welcome back mum

the good news

The journey, not the destination. I'm certainly always on one. The twists and turns. Right now I'm back in a lovely bit of road, it's pleasant enough, no real bumps to speak of.

So this next 6 months is as set as it ever can be. It's what I needed to hear. It's been a stressful year and I needed to know the magic of Malawi isn't the only reason I'm safe, maybe for a little while longer. 

VHL isn't what's going to cause the bumps for a while. I hope

it's probably nothing

Sat on a toilet.

Common I think.

Here I am taking it all in to make sure I can face my baby girl.

"Prof wants to see you face to face" 

It'll be my eye

It'll be something

Maybe nothing

Can it wait?

Am I over reacting?

Can VHL wait a bit longer?

I know I've had a good break... Eyes are so good when they work. 

Maybe I need to go home

Maybe it's time to face reality again

And I'm in the toilet for two reasons.

1 + the email shocked me and I took a sharp intake of breath and that starts me coughing and that starts me sneezing and that takes a while to stop. So I need to blow my nose and have a wee

2 - I'm protecting her. 

Should I be?

It's probably nothing

Home and a cushion

We made it home in one piece, the unpacking began, I always do it before I sit down. We have one bag missing but happily it is one that only has stuff and things. Nothing meaningful.

Never before have I travelled with such important cargo. Not counting my living family.

Now, in my room are memories of my dad and a little bit of him. They surround me physically in a way he does in my memories. Now I see him each morning. He's visiting and staying with us a while. 

It's important. 

I didn't realise just how important.

There is a faint smell of him from the aftershave my nephew sprayed on the T-shirt that my big sister had made into a cushion. 

I've said goodbye to him at my childhood home and welcomed him into my new and for now home. 

I'll show him my garden.

I'll see if he has any advice on my tomatoes.

all of the reasons home is harder

We've now done all the 'homes' 

They are all harder than would be ideal

They all have people

They all make more sense when you're away

They are all are filled with past and memories

They are all harder

familiar chairs, unfamiliar faces

I'm sitting in the yellow chairs of the imagining department. It's been like this for a while, the changes and improvements continue. This place holds a lot of memories for me. 

I've been coming here for so long, for me and for my dad. They always ask after him on the ward, so I'm glad I'm not going there today. But who is left to ask, maybe a couple of the nursing team. If Prof Drake was in, maybe him. He won't be. It's not a clinic day. It's a scan. 

My full scan.

How lucky I am. It's the back bone of our country. I'm sad and angry knowing what the government are doing to it. 

Will it always be here?

I'm feeling nervous, unsettled and unsure. I feel cheeky to be getting the scan and also relieved. 

But I normally build up to this. I was caught off guard. And I don't know when I get the results... What will they say, what will the next year hold? Are my kidneys going to be ok this time, has anything new and dangerous begun, are the old and previously faithful ones behaving? 

Who knows.

Not me of course. 

Not yet. 

winter is different

I'm looking at one of the fastest pigeons I've ever seen. I have on a hat and scarf to begin to warm up for a walk in the grey cold air of my home town. 

This place, my home, my land is different and more than ever before. Changed forever because he's not here. His room is cosy and comfortable and he's not here. My mum has done a great job of making it feel full, but it's of course empty, unless we're all in it, filling it with jokes and laughs, which we've been trying to do. 

it's raining

Here in the heat of Africa's warm heart I'm watching the long awaited rain begin to fall. It's been almost a month since there was any real rain here in my small part of the world. 

It's gentle, the rain the mornings tends to be, it's falling softly and steadily and it's easing my sadness. 

Afternoon rain is heavier, more urgent, it's responding to the heat of the day. That was my tears yesterday. Now my tears are morning tears. 

Familiar strangers

I suspect that many people have more than one home. And some, none.

I'm about to leave home to go home. 

I'm nervous, excited, longing for the familiar of before. I'm happy to experience the cold and the sense of just being where I know I'm welcome. Not a guest. 

But this new home is really home. And I'm going to miss it. There is a simplicity to life here. 

I'm nervous of the situation there and how to fit everything and everyone in. 

Focus on family and friends, the close ones. Mainly my mum and sister. They matter the most.

And I'm there to say goodbye to my dad. 

My heart feels a strange type of heavy. 

flying home for Christmas

I won't believe it until I'm in my mum's arms, but we're going. Red lists, politics and my own sense of trepidation aside, we're off. 

Nervous doesn't come close.

That's if we get all the things you need to fly, that's if the plane goes where it's supposed to go.

I don't know how I feel, except right now, anxious. 

inheritance

I get half the House

One day

Facebook memories

It's this time of year when Facebook reminds me of that time.

6 years now, 6 years I really didn't think I'd have on some of those days. 6 years that have made it such a joy to be able to do everything and nothing that I do. 

And although the slight layer of fear persists that it could happen again, this year there has been a break through. This year I know about a drug and this year, maybe I'll be able to have a scan in a machine just 30 mins drive away. 

This year I'm feeling great. 

how she died

I wonder what it was like for my Gran, the one I never met, that my dad hardly knew. I wonder what her death was like. Dying of a brain tumour. 

I'm guessing not great. 

I suspect it's why my dad wasn't allowed to see her. 

He didn't talk about it. 

Nothing to report, he would say. 

My grandad didn't either. 

But I wonder. 

my friend...

A pal of mine is having brain surgery today. It's the 6 year anniversary that I was admitted into hospital for my second brain tumour. Somehow this has made me believe this is a good sign. The connection. 

She needs to make it through. 

I don't remember

I do.

I remember being so utterly helpless and so in need of someone to help me take a shit in a bed.

I remember only being able to piss a little bit at a time.

I remember being on my period and not being able to change my tampon or pad.

I remember not being able to feed myself.

I remember seeing the pity in their eyes

I remember the indifference in yours.

I remember being totally reliant on others, you. 

I won't ever forget. 

It's not ok that you don't remember. 

It's not ok to have forgotten.

It's not ok that you did it all so easily.

I don't want to be my dad.

I don't want to go through that again.

I don't want you to have found it so easy.

Then, a small glance of it. A moment where I got to care. We don't talk about it. 

I tell you I love you. I don't think you noticed.

I've walked away from a moment where I tried to connect, tried to get you to notice me. 

I often think we've lasted this long because you don't.  

There will always be a reason why I'm wrong. Why I didn't get it right. I'm used to it. I'll keep going. Probably because I do actually love you. You're really rather amazing and brilliant. I'm not the same as you. Never could be, never will be. 

Sometimes a new person sees me. 

Tonight you tried to laugh at that. It worked. I stopped myself being seen. That's ok, you worry that who I am isn't that great. You don't want me to embarrass myself. 

That's why I've hidden in the shower cubicle. That's why I'm only going to come out in a bit. That's why. 

happy birthday

It's been a hard week, I don't recall feeling this level of grief for a long time. When after his death it seemed easier. I think it's the feeling of being so impossibly far away from home. 

I've felt simply sad.