The gaps

I had an interesting WhatsApp chat with my dad yesterday.
I asked him the biggest gap between surgeries.
13 - 30
Not bad.

I think those who have proper cancer might call it remission.

We then remembered the other ones, how many, what they were. There e 7 or 9 he couldn't quite remember. We didn't what to count the radiotherapy as.
All very matter of fact.

He's always been cup half full when he talks to me. I don't know how real that is but it's his way of talking to me about it all.

He's on my mind often... At the moment I'm thinking of him because I've hurt my index finger on my right hand. It's stopping me from doing some things, I am finding ways around it but my husband had to cut my dinner up, I ordered something I could eat with a fork only and I keep going to do stuff and pausing, finding a way around it.
I was asked why I didn't use my left hand, I reminded them that if I wanted to guarantee it would get in my mouth. I've been good at hiding my disability. Or have I been letting myself continue to be disabled?

It's just my finger. It is temporary.
For my dad, his whole body won't behave. VHL and the subsequent treatments have caused all this.
He had years and years of normal. (VHL normal)
I want even more years of normal. Proper normal.

He'll be 70 next year.
Lots of people don't get all those years.
My brother didn't.
My finger hurts.
13-30 the biggest gap for him

0 - 17

17 - 20

21- 34

34 - 36

36 - long gap please
I don't count the eye stuff
I think my numbers are right.

Waiting

Grrr, I'm told the meeting is at the end of August.
I'm not feeling very patient

Self preservation

Wow, we're not quite back in Blantyre but we're in Malawi. The journey has been rather epic so far, but nothing you can't handle when you have two people who love you with you, and knowing that you walk with privilege and money and ways out.
I'm sitting feeling tired but calm, another year stretching ahead of me, one that I hope is as good as the last.
It's been a while since I've been able to say that.
The stresses and joys of England and being in that place I also call home have put into sharp focus the reasons we're not in a hurry to go back to the UK.
Here is different and that's what I need.
A friend mentioned that they understood the need to be away, self preservation they called it. I agree.

I dreamt of a spreadsheet

In my subconscious I'm getting impatient. Last night my dreams were about getting results and a fictional spreadsheet of my tumours and their growth was created.
It's not a bad idea.
I think it comes from explaining to my daughter what they do if something is growing.
They plot it, monitor it and we see.
I might make my own spreadsheet.
In one of my dreams I went to my old house. It was full of students and they were painting bits of it yellow.
Then my Dr told me the cancer was only growing slowly.
"That one?" I asked pointing at my left kidney. He confirmed.
And I knew that was that.

Sister

I knew coming home to Norfolk would be the hardest bit of the return trip.
I don't feel like I belong sometimes but I fit here. The place of my childhood, pointing small things and places out to my daughter. 

Yesterday, fuelled by drink and sun my sister did what I knew she would... She let me know that she's angry with me, she cried, I cried, she shouted at me and found blame in me, my mum, my dad, herself. The Catholic way of dealing with whatever it is. 

She shouted that I was so self centered. Recognised that she thinks it's not my fault, that that's the way I was brought up, after my brother died. And in many ways I agree, she's right, I am. I do things for me. I choose life, I choose experience. She realises too that I'm expected to live two lives, mine and my brothers, and she feels she has to stay here and be the one with mum and dad. My mum was so worried. She hates it when my sister is angry with her. My poor mum. 

I could go into more detail but I think it's ok for now, until I do something else (or don't)
And in amongst all that my dad needed attention.
I'm too tired to explain it all.

Each time I cough

I used to hiccup.
Now I cough.

Funny. Both involuntary one quaint the other a potential for germs.
However I now do the later more.
So hidden, my quaint disability. I'm struck that it's so survivable. Well at the very least I've survived. And so has my dad. Not my brother.
Today I took a step back into the path of a career I had been so very certain of. Without knowing it the growing number of hiccups meant I couldn't be who I assumed I would be in that role.
And now I am feeling that despite my ever lasting odd cough I'm more myself.

I feel like it's going to be a good few years. I hope VHL agrees.

Other peoples tumours

The first time it occurred to me to look up VHL online I was thrilled. A sense that it really did exist, rare but real.
Then the day I realised there was a group.
Not only was I real but there are more people than I could have imagined.
I connected with a couple of people. I'm still connected to some.
And now it's Facebook.
But now I read about the VHL community and I know I'm not alone. I don't feel rare but I feel the inevitable.
We advise each other, we share fear and pain and we see scars. A lot of people pray for each other. That's how many justify the experience. But I'm doing a good job of ignoring my potential tumour growth. But I see each one.
I suspect we all do, see the next operation, dreading the results of the next scan.

While I'm swimming he's drowning.

I feel a lazy sort of guilt right now. I'm sat reading, g&t in hand and looking over the lake. Like I've run away. Which I think I have. My mum and sister, meanwhile are at my dad's side, battling again with the fact that he's in hospital, again. Am I allowed to do this?

I am anyway.

Bad daughter.

This time I found out via WhatsApp. My preferred way of knowing he's ill again.

I tell myself, I wouldn't be there. I'd be in London. Only leave if he looked like it was the end. The real end.

I secretly said to myself today. Hold on until July dad. Let me see you one more time. I didn't take you seriously when you said it would probably be the last time we saw each other.

And what would I want from my child?

Honestly, not for her to fuck off half way round the world. But I know too, I don't want her to be trapped like my mum and sister.

And the inevitable fear and hope that if he wants to, then times up. I wonder how and if he does want it to end. I recall him acknowledging the wishes of his father. He didn't want a slow undignified drowning into mental oblivion with dribble on his chin. Heart attack. I think he got his wish. Too late for a fast exit for my dad. I wonder too if he keeps agreeing to operations so that one, finally completes the cycle. Put to sleep gently. Like so many of our dogs.

I wish I knew.

I can't ask.

When I do, I don't think he tells me the truth. And that might be because he doesn't know himself, or he doesn't like his truth.

I don't think I'll ever know.

The importance of sleep

I'm sipping tea, listening to one of my favourite podcasts and thinking.
And despite the ever present undertones of anxiety and self loathing I'm happy and rested.
When I get back home, if I still feel I need it I'll tackle those two but I'm hoping my time here will continue to lessen them.
I've slept well.
I'm aware of the balance of life being so much better here. And I genuinely feel sorry for my colleagues left in the UK who are not enjoying this life style.
I've always been of the opinion that sleep is very important. The podcast just mentioned an article about it. Science has confirmed my instincts.
Sleep is easier here. Easier now.
I'm happy.
I know the ups and downs of happiness and so I'm going to do my best to endulge myself in this current batch of it.

Facebook and my mother

Twice in four days I've read a post from my mum that states my dad has been close to a crisis. Both times the way I found out not all was well.
These are cortisone ones.
The first suggested that all was now well.
It wasn't.
He was admitted to hospital after that one.
This next one shows a picture of my mum and dog. Not one of theirs.
It implies everything is under control.
It isn't.
I'm thousands of miles away. Trying hard not to let my mind drift to the news I'll one day hear.
There isn't anything else we can do. Or, your father is dead.

He has a mass.
He's getting a scan.
He's signed a DNR.

That's not on Facebook.

Yet.

Being a little inspired by missing home.

I felt terribly homesick this morning, this has been brought about by my mother's insistence that I come home this summer followed by a dream about going home but not being able to see them. Mum and dad both know they won't realistically be able to come here; not together. I miss my family being close.
I cried a few small tears and held my daughter. She recognised my pain and immediately held me, tight and offered words of comfort. She is fast growing into an emotionally astute child. I see how much she yearns to protect me and keep me safe. She knows, as I do that that is in her arms I am my happiest and  we both know our relationship is better for the move we've made. Here we spend time with each other and I know it was in vogue to say this some time ago but it is quality time. We talk and communicate. I'm a lucky mum. She's becoming more and more independent and yet we're so much closer. Next academic year she'll be in my school. I hope the teenage years don't get in the way too much.

Accompanying the fleeting feeling of missing home she saw the importance of saying she too wanted to go home, for a visit. I don't think she really meant it. I get the feeling that Malawi is home for her in a way I hadn't imagined possible in 6 months. The UK is my home, but Malawi is growing to be home. Where she is, that's always going to be where my heart is.
With this a message from home reminded me of the love I have in the UK too and how secure my place there is. He makes me feel respected and valued with just a few sentences. It was the bolster I needed to get up and get on with the day and to remind me I can be an inspiration here too.
I hope so much that the most recent opportunity that has presented itself comes to fruition but I know that of this one doesn't, something will. I'm a seeker, I look for life in each encounter.

I'm happy to give that credit to VHL today.

Plus I should be able to get an MRI if I go back! ONe worry out of the way oh and I'll have amazing cheese and chocolate orange and buy a bra!

Good bye 2017

You've been a strange year.
In 2017 I've been at an all time emotional low and felt like my life was destined to be rotten. That I was rotten.
And I'm about to host a party where over 30 people I didn't even know 5 months ago are coming to celebrate moving into 2018.
Who knows what the next year will bring but this year has proven I am a warrior.

Happy New Year.

Hugs

My husband and I binge watched a harrowing TV series this week. In it hugs were mentioned, used and perceived in various ways. It had to be deliberate. A hug, so innocent and powerful, and creepy.
It's only a few years old but already dated.
Hugs for boys and hugs for girls.
Hugs for comfort.
Hugs for memory.
Hugs for plot.

And as I watched, crying silently and feeling the closeness of grief my husband asked why I watch if it makes me depressed.
"It doesn't make me depressed."
"Wrong word."
"It pulls up the saddnes. I feel sad."
And a moment of truth sounded.
"I'm this close to saddnes all the time."
And unsaid... That's why I have to keep busy, that's why this helps. It's controlled.

And the hugs got to me. And another penny dropped.

My dad can't hug me. I don't remember the last time we did and when he could.
We hug him. Gently and carefully because it can physically hurt him. This fucking disease has stopped my hugs with my dad.

Probably nothing

The panic has subsided, a problem shared! The pins and needles isn't daily and most likely more about a stiff neck due to exercise. But I'm still a bit worried. The NHS feels very far away.
I haven't had a reply from anyone about MRI scans here and yesterday a colleague was complaining about the terrible insurance we have.
I am good at pushing this all to one side. My significant other is the world champion.

The confession

I'm considering applying for a job. I'm unsure if I should. The current lack of work stress is nice. This would potentially change that.
But VHL has its own way of making things stressful and for the last few days I've kept that all to myself. Until tonight. Tonight I confessed.
In the safety of his arms and while we were being honest I told him.
I have a new symptom. I'm scared. I want to be in the safety of home. It's not my imagination. This could be serious. This could fuck everything up.
And I cried.
Then we talked strategy.
Then we looked up neurologists in Malawi.
Then we looked into the medical insurance.
And then we had a beer.
Who needs the use of their arms?

Me, me, I do. *puts hand up in the air.

I just can't get to sleep

I'm not going to post this straight away. But I can't sleep.
I've let someone I care tremendously about know this blog exists and he's reading it.

I can't get to sleep for all sorts of reasons but it started because I drank too much and I miss my brother.
My daughter was asking about him today.
I can't know him anymore. He's almost been dead as long as he was alive but as his little sister, well, that passed long ago.
He knew me before I knew me.
He'd seen and understood what my feet were long before I stood on them.
He shaped me without intending to. He was my big brother.

I wonder if I seek that gap out.

And I'm sad. I miss who he could have been.

Pardon?

A common dad joke, anything to do with hearing and my dad would always say, Pardon?

He can't hear at the moment.
Pardon?

Yes, you heard me. He can't hear. No hearing. Deaf.

Says he'll learn sign language.

I guess we all will too.

It's not clear why he is deaf. Old age, the gamma knife surgery, wax...

The hardest thing is that one of his all time joys is listening to music. His life is already so limited. Watching a film, listening to music, hearing. This really isn't fair.

My dad, my hero

The man I knew as my dad as a child has long gone.
For a while a shell existed where he has been.
I think though that this new dad is really rather wonderful (most of the time)
He, while strapped to an expert, jumped out of a plane two days ago. Lost a converse trainer but enjoyed it.
Why? Why not.

I explained to a new, potential friend that he started really trying again when he saw that I could give up.
I was very close.
That month felt endless.
I knew I could be a shell too.
I have it in me.
But I was saved and I live again.
So does he.
It has to be these big, larger than the disease, events.
He can't dance, so he flies.

Forum or not to forum

To not feel alone, no one really is anymore but when you see others with the same disease with you share you know you're not alone.
But today (and others) it doesn't seem like a good plan.
I don't want to see the potential problems today. I'm fed up with the constant struggle I find myself in with the never ending fear of 'what next' what else can go wrong.
We're trying to escape...
I might silence those for a while to help me do a better job of pretending everything is fine.
All is fine.

A genetic defect

That's me
Flawed
At a cellular level
Moral too
Aren't we all
I fight an inner struggle that I imagine is familiar to all of us who have the privilege of wealth, comfort and time. I don't like myself. I don't like the way my body fucks me over.
I don't like how much I dwell on the negative things I do and say.
I'm struggling to forgive myself.