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.

counting your blessings

I'm alive, a good place to start. I'm able to take and pick up my daughter from school. My work are being really supportive and I don't feel pressure to return too soon.
I am getting better, slowly...
My friends have proved to be wonderful, caring and positive and just amazing, I feel loved and valued by them,the real friends are there when you need them, the people in my life are good people.
I know myself in a way I didn't before which is actually a mixed blessing because I know some things I want but can't have. That's hurting.

I should remember that recovery takes longer than you think it should
I still feel quite sick.
My body isn't mine.

I can't process it all yet, I don't know who to talk to. I don't know who'll listen well,  I am self indulgent at the best of times but I do need to talk this one through and I don't know who'll listen, well. Who the hell would want to? I feel changed and I don't know what the consequences of that are.

Who can I be honest with? Who can listen?

getting better

Today I feel largely frustrated that I'm not yet myself. I feel sick and my head still hurts and I'm wobbly and weak and my hair looks rubbish.
I have to be careful on days like today because I know they can lead me down a dark path. I am strong, I can overcome this all, I can get used to almost anything, I am strong.
But allow me to indulge myself, what if I'm not? What if  I won't ever be the person I was before, experiences do change you and this felt big, this has changed me. I don't feel like I'm ever going to get better, so much feels like my body doesn't belong to me and it doesn't know how to come back. I feel quite lost in my fear of not gaining back control.

headache
feeling sick
no appetite
wobbly
balance off
arm tingly (left)
eye feel odd
general weakness
shaking

and yet so much better than before the op, they where hellish days, each day more unbearable than the last, I couldn't even feel bored because the unpleasantness of it all so so extreme.
Count your blessings...

I'm trying to.

Home alone

I'm at home on my own which is rare now that I have a little girl. She has gone on an adventure with her father and I'm staying put.

Not that I don't like adventure, it is just that I'm more of a worrier and I don't want to ride a bike that far to get wet and not have cups of tea.

He is an amazing dad, the best and he always will be. I hope and I need to know that because who knows how long I'm going to be here to be the mum. I'm hoping ages, I'm hoping medical technology keeps me alive and well but as yet there isn't a cure and so I know there is a chance that I won't be physically able to be one type of mum and in my darkest moments I wonder if that sell by date might just come true.

I've bee getting pins and needles again this last couple of weeks and at 11.4mm I think that brain tumour of mine is doing a bit more than giving me hiccups. I'll keep a note.

A medium mood day.

Telling your child you have a brain tumour

I'm posting a lot today as I've been saving these up.

We discussed telling our daughter of the latest news and I decided it best to make it a matter of fact kind of deal. So a week ago as we were in her bedroom I decided to tell her. We lay on her bed and I said something like "you know when you were at Grandma's last week and I went to the hospital well they told me I have another tumour they need to do something about."

As part of the conversation she asked if I was going to die. Now then, I've always been clear with her that we all die and I don't want her to ever think I lied about it, I said that wasn't the plan, that the Doctors had found this one and were going to do something about it.  I told her about when I had one removed before and reminded her that I had had the kidney tumour removed and I'm fine now.

I told her it wasn't a secret and she could talk to me, dad or anyone else about it but reminded her most people wouldn't really get it but if she wanted to talk about it she could.

We both cried a bit, I tried not to but it happened anyway.

She hasn't seemed bothered about it since, I think I handled it well.

Relentless

This disease is relentless, well it certainly feels it right now.

https://vimeo.com/118914870

As William Dafoe  makes clear, getting told over and over again. So much so I've forgotten what it feels like to not have something happen. What is good news?

The latest is a brain tumour, left cerebellum and near the brain stem. At the same clinic my father was told he needed treatment on two tumours.
My mum wants me to be angry, she is but I don't feel those things right now, I feel sad and scared; since having  my daughter each time the news is bad I get frightened I won't see her grow up or that she'll have to live with me as someone I don't want to be and that frightens me even more. My father isn't the man he used to be. It's taken him a long time to loose his body to VHL and he's been very stubborn about that and I don't mean he's fought it I mean he has taken a long time to accept the possible help that is out there to get used to the worse body VHL has inflicted on him,. That means that he hasn't been able to adjust in ways I think would have made him a happier person and has left our family with a very different man to the one we used to know.

That's something I'm determined I won't do, each time this disease steals part of me I'll find a way round it, I'll fight I guess. I'll do my best to be who I am, whoever that is! (Although you can't deny that my dad's body seems capable of withstanding every kind of operation  possible)

As always I've told people in my own positive way of the latest bad news and reached out to my friends and family who have gathered round me and made me feel loved and supported, telling me how strong I am and how I'll get through it. And when I really don't feel strong they hold me up, love me and I find that a comfort and a blessing and I know that no matter what I am a lucky person because they are there.

Being normal

I've spent a week with my dad and his disabilities. We do all take so much for granted, such a cliché now but when I think of what used to be possible I realise how much he is missing. But my daughter doesn't know any different and as a result it seems to me that they have the best relationship out of all of us. She doesn't have any false expectation of him, she's only ever know who he is now and she loves him completely.
They get on, both as daft as each other. He winds her up; she winds him up. They play together and he is a proper granddad who does granddad type things.
So I miss parts of him that he misses but at least they are both enjoying their time together.

Dad Update - email to people

Hello everyone.

Not the best news but the expected news nonetheless. Dad met with Mr S and Prof C on Friday and the results of the scan show that he does need to have surgery. The tumour in question has grown quickly and is what is causing the balance and speech problems. It was 10mm a year ago and now it is 2.7cm; it’s solid and it needs to come out. There was talk about waiting till after the baby is born but after a family conflab it was agreed that the little bugger should come out as soon as possible which is what Prof C says is the best course of action. Dad is going to contact them tomorrow to tell them this and I suspect that dad will be admitted quite soon.

Obviously there are risks with the surgery and they all sound horrendous but there is the chance that he’ll be fixed and as good as new. So once more, please put your positive thoughts; prayers; ask the universe… what ever it is you do... (probably best to avoid any pacts with the devil) to ask that all’s well that ends well.

Love to you all

Today I feel sad

My dad said ‘hello sweetheart, where are you?’

‘You’ve got some results haven’t you?’

‘Yes, are you with anyone?’

‘Yes.’

‘Right.’ He said in his matter a fact voice that I have come to know so well in these situations. I always know when it isn’t going to be great news, he always approaches it in this way. I love him so much.

The letter said that the tumour in his cerebellum has grown and is the most likely cause of the balance problem. He is to go and see the Neurologist on a Friday. It said A Friday, not a specific one. Odd. I cried quietly while he pretended to be fine about it all and mentioned that f they could solve the problem then he should be able to ride a bike again. We pretended to each other that we where fine and positive about it. We talked about mum and the fact that she has only just done a solid poo since she came back from Egypt. We laughed and we said we loved each other and I put the phone down and sobbed. I had a little bit of hope in me that it was going to be a medication problem. 

He can’t die before his granddaughter arrives and he must be able to hold her and hold me too.

I phoned him and mum this morning, they had been worrying all the night before and had somehow convinced themselves that the tumour the letter was referring to was the one on his brain stem. I hope I managed to convince them it isn’t; it’s one that was already in the cerebellum. They are different places in the brain; it would have made it clear that it was on the stem I’m sure. 

If it is that one then, well he’s fucked! Excuse my language but there it is. I feel sad and as I sat on the toilet and my baby girl kicked in my womb I said ‘sorry’ out loud. Sorry I’ve done this to her. Yes she wasn’t planned but who am I kidding we weren’t careful. I wanted to be a parent so much that I’ve been selfish. Please god don’t let her have it, please god don’t let her have to feel this pain. But she will won’t she. No matter what. I’m probably going to be phoning her and saying… ‘are you with anyone? Now sit down…’ And it won’t be one day it will more than likely be a few times.

How does he do it? He mustn’t die yet, he mustn’t be harmed again, he mustn’t be a memory I have to tell. We already have to do that with my brother for my nieces. Then I think of friends my age who don’t have one of their parents… for 28year of age I’m lucky and not so lucky. It could happen but I hope and pray it isn’t yet.

Today I feel sad.