Monday, December 11, 2017

Christmas in the rainy season

The images from home are full of snow and here we are in the rainy season. A huge contrast and reminded me of the contrast in my Christmas list year too.
The darkness of life a year ago was not being covered with a layer of snow. It was cold and grim.
It's not perfect here but it is so much better. It's brighter and we're all happier.
I've made a couple of real friends here already. Proper ones who are mine now. They are on my list.
One of them justs gets me and last night gave me just what I needed. A shoulder and a stern reality check. She gave me the strength to get up and get on.
I'm so lucky. To travel this far away from home is a risk and I miss my friends so much at times. To have made a new one here that I know will help me and I'll help her is wonderful.

Friday, December 01, 2017

In a show

I'm in a pantomime. I'll up date you!

Tuesday, November 28, 2017

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.

Monday, November 20, 2017

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.

Monday, November 13, 2017

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.

To be or not to be

A simple question. Because I'm a to be. No matter what. I've considered the 'not to be' talked my way into the who would hurt. How should I do it. That was before my brother died.
You'd have to be the most heartless person in existence to do that to your parent's twice.
No,  I keep on with the to be.

Despite the agony.

Saturday, November 11, 2017

Living your best life

There were so many reasons to move to Malawi. Today I sat with someone I've only known a little while and confessed to a snobbery I have. We talked about it, he listened and I felt sad that I'd left those vulnerable kids behind.
But in my heart I knew I had to. To save me and in turn my marriage and my child.
I had to find joy again.
I was no use to anyone with darkness knocking at my confidence. I can blame many things, people and naturally myself for the level of depression I experienced but that doesn't help.
Change did.
Big choices, small ones, brave ones. They made a difference. Love and support.
I am so pivileged.
I am lucky despite the troubles I have faced.
I was created with a genetic defect but I know gave me a strength that have helped me not just survive but thrive.

Thursday, November 09, 2017

2 years hence

And Facebook knows. So do I.

Sunday, October 22, 2017


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

He can't hear at the moment.

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.

Thursday, October 19, 2017


This hash tag has come at a time when I am strong enough to own it. Oddly having just experienced another incident. A drunk old man. The shock was such that I froze and I found myself right back to the self blame, it's what I do that makes these things happen.
I was too nice to him
I didn't say no
I didn't object to his obviously flirty behaviour the first time I met him, I smiled

But the impact of him grabbing my face and kissing me on the lips and then later grabbing me again and kissing my neck was fear. When I got home to the safety of my husband I cried and cried.

My list is long and as I read other stories I recalled so many more.
They often only last 5 seconds, the cat calling. If you don't smile it's normally followed up with a  'bitch' or other insult.
"Smile sweetheart" just as creepy

Then the slightly longer, having your neck massaged by a man you barely know. Most memorable at a wedding

Being touched when you're pregnant, like you're public property (women do this too but most women ask)

Being grabbed by two men while another shoved his head in my cleavage.

Bum grabbing, very common in pubs and clubs

Thighs felt

Being given drink after drink, tipping them away, saying no... Being walked home, trying to kiss me despite saying no... More than once.

Being touched on the vagina while being given a piggyback

Being raped

And more

Seems VHL isn't the only thing warriors fight. 

Being a parent from a bed

We're on a beautiful half term break and I got food poisoning. A day of being in bed, in-between the inevitable trips to the toilet!
As I lay there my now 10 year old trotted in and out, not remotely phased by my smell, lack of energy etc. She even managed a very sort outburst of defiance at having a shower. I use my firm voice in return, got up to fix the problem and fell back into bed exhausted by the effort.

I suppose the two of us are used to me being he mum, ill or recovering in a bed or on a sofa. There have been patches of her young life where I've been like that for weeks. So we did it again.

This time it was just a day.

Sunday, October 01, 2017

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.

I can't have a baby

I love my daughter, she is our surprise and delight.
I wanted more, I don't admit that often. No point.
But I get a pang of jealousy when I see the bundle of happy faces in pictures or in really life. I know it would be harder but I wanted a noisy family. We're a very controlled and happy  3. The magic number.
It's on my mind that even if I were to have more it's such a reckless thing to do. I'm almost 40. I'm diseased. Yesterday my husband almost didn't get the condom on in time.
I feel sad that it was the fear of the health consequences that have left me in fear and a secret part of me, ever so slightly thinking, ah but I'd have another one. Then I push that away and cover it with the facts.

We'd have to leave here. It would be a logistical nightmare.

Wednesday, September 06, 2017


My little one has her first day at her new school today. She was excited when she left but a little overwhelmed by it.
The reality of us being here hit her. I could tell she was bothered by it.
Eventually she let go and cried. Real tears. She misses the familiar and her friends.
I miss mine too, I miss knowing I'm close if I need them.

Friday, September 01, 2017

First proper day at my new job

To go from being in charge of so much, to now so little is strange and healthy. Yesterday I happily finished a meeting and went home, cooked, listened to my daughter read and had a relaxing early night. I've read books, done a bit of prep but just enough for now.

The internet is so slow there isn't really anything else to do.

It's surprising but the lack of stress and tension is the best part of this change.

There is some, but that's so much more about where we live and getting used to that, but once we are, well time will tell.

So today I go off to be a new member of staff, not in charge of anyone really. Just the students and I'm told they are a delight.

Freedom from the last year and a chance to start again. I'm privileged in so many ways.

Sunday, August 27, 2017


And here we are, a few stressful moments but 3 days in it feels good. Feels like the right choice. Live each day.
Some of the worries have dissipated and I feel happy.
Happy in a way I haven't for such a long time. Not the extravagant happy that I've felt. Not the guilty happy.
This is the happy I've missed. The soft curl in your mouth because a bit of you feels genuinely content. The base level of happy that keeps you safe and warm. The opposite of depression happy.
The no frills, comfortable happy that I took for granted, until I lost it.
It's a fragile happy still, is doesn't have it's strength back.
But if I nurture it, it will.

Friday, August 18, 2017

Saying goodbye for now to my dad

It's never comfortable for my dad to travel these days, it's hard for him to get about but he does it anyway, when he can and for a good reason.

He came here yesterday with his carer, made it up our steps, with help and we had the lunch I had made.

He told me he loved me, how proud he was of me and how sorry he was he had given me this disease.

He explained how he feels he is deteriorating still, that each time he gets ill, he doesn't fully recover.

He was saying goodbye.

Wednesday, August 16, 2017

Turning 39

It's another year and another achievement. Getting here.
According to that fateful letter I've got 13 years left.
Better make the most of them.

My birthday also showed me how loved I am and how I've learnt to keep amazing people close by.

I'm a lucky woman with an unlucky disease.

Monday, July 24, 2017

Dubious and misjudged?

Mental health is a fashionable topic, impact on stress, work related or otherwise.

In my last year at my last school I was told that some of my decisions were dubious and misguided.
Those actions, as far as I think they were referring to, were to be there for a friend who needed some unconditional love.

The accusation was thrown at me by someone who couldn't see the truth behind my actions. He saw them only as an attack on him. He's freely admitted he has trust issues. He told me he was angry with me. But hadn't sought out any facts just heard parts and jumped to conclusions.

This was months ago and it still makes me angry.

But a great sadness occurred, one of his closest friends committed suicide. I offered him my support, regardless of my feelings I knew he was in a bad place. He didn't take it. How could he. I know he'll have wondered if there was anything he could have done to change things. Perhaps given him the job we both went for. I know that crossed my mind. But he could have been a better friend. Maybe if more people helped with stress at work. Change that culture? I bet he's thought of all those things.

What I hope is that all of these things mean the next time there is a chance of helping he does, the next time he listens well to the people who care.

Sunday, July 23, 2017

The residue of pain

Term is over, and so to is my time at that school.
I left with a sadness and sense of defeat, I felt a bit lost and, although loved by so many there were key staff who made me feel completely disposable.
While there I did so much, helped so many and because I didn't have quite the same vision, the same sense of urgency I was rejected. That's how I feel.
Three years.
I expected to be there so much longer, I felt part of their #family. Until I was clearly the black sheep.
Lessons I should try and learn, (but never seem to,)
1. don't rush back after surgery. For a while, people are impressed, but often, if your pain and disability aren't seen, then they don't exist for others.
2. Be careful who you trust
3. You're forgettable
4. Your leader needs to be morally aligned to you.

I'll grow from it.

Now I need to wash that away. Move on and be grateful that I could make the difference I did.
Next adventure.

Tuesday, July 18, 2017

10 years of love

My little girl turns 10 today. She is my joy and my heart.
When people discover I have VHL and that it's genetic they often ask... And your daughter?
The relief I see in their face is sometimes overwhelming. 'I know' I say. 'I'm not sure if I'd be able to cope if she had it'
Or my other response 'we had her tested at 3 months, best day of my life knowing she didn't have it'
Which leaves me thinking how awful it must be to have children with it, and reminds me how awful it is to have it.

I'm bargaining with fate, asking for 2 years please, is that so much to ask. Two years of tumors control. I can't even ask for tumor free. That's not something I can ever hope for.
I'm a defect after all.
But if the universe could give me the next two years (four would be fabulous) to have an adventure, to treat myself and my family to a break from VHL, that would just smashing, thanks.
What will I give in return?

Saturday, July 15, 2017

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.

Sunday, July 09, 2017

A genetic defect

That's me
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.

Thursday, June 22, 2017

Past, now

I'm struck by how much of my past impacts on now. I'm so desperate at times.
So sad in others.
I find myself angry very often.
Near to tears the next.

Monday, June 12, 2017

Pancreatic tiddlers

This years clinic was a good one. Perhaps the almost the best I could have hoped for.
Two new tiddlers in my pancreas. So far untouched but now they add to my list.
I'm fit for work.
My father needs gamma knife.
I did the usual optimistic posts and messages.
But it's the hidden fear that it evoked, more, my list grows, more, two new ones to watch, more, worry, more, more, more.

Each hiccup, each twinge, each sensation reminds me... Life limiting.