Tuesday 31 July 2018

Struggle, and ‘Which wolf will I feed’?

I read this quote today and I am ‘struggling’ with it…

 “Don’t let your struggle become your reality”


Struggling with it!!!🀣

Yes it very much feels life is a struggle at the moment. Not only with my after brain tumour symptoms, but my very much niggling (ache to sending sharp pains into my hips) backache, tiredness from waking up before 8 am (as we have builders refitting our kitchen and that’s when they arrive), finances, kids things…

I know regarding my tumour I have been feeling this for a while. I purposely stopped following several brain tumour groups as a few weeks ago I realised I needed to separate myself from them for a while, focus on me, focus on moving on. 

I am always going to be a brain tumour survivor, but I don’t want it to define me, there are other parts of me too, some of them feeling very much hidden right now.

For the previous twenty odd years my life focused on my kids. I haven’t had a ‘proper’ job since I was a teen, and although have been working part time self-employed with Dave I didn’t actually get paid as I helped him. The money he got just went into our household finances. It might sound odd to many but I actually found part of me again when I was forced to listen to my body after the brain surgery!

So although part of this time has been extremely healing and positive, but I don’t want it as my identity either. 

‘The woman who had the brain tumour.’

I’d like it to be the artist – but I am very much accepting that I cannot do what I once did. It would be a struggle, yes. So maybe not much of a better identity?- a struggling artist!

So I am pondering this in my head. Writing my thoughts down. Listening for answers. The thought I need to find ‘the opposite of struggle’ and have that as my identity.

This quote pops into my head…

Two Wolves quote

 … and once again I know I have to change the ‘wolf’ I listen to.

Instead of the struggle I need the positivity, the overcoming, the presence, the acceptance, the helping, the healing, the joy, the loving. 

I need to feed the positive side.


Wednesday 18 July 2018

Tough Days

Today I didn’t wake up until 10.15, but I still felt shattered, had blurry eyes and no energy. After half an hour or so of laying in bed I finally got up, had a shower and made some breakfast (even if it was past 11 am!) I am sitting eating it and just feel awful. I feel blurry inside. Like I have not slept all night and have a hangover. (If I remember the feeling of a hangover correctly- I haven’t drunk any alcohol for well over 25 years!) 

I feel wobbly - but I am not wobbling, off balance - but not falling… just bleugh!

I try and continue with being vaguely productive, even if it’s just basic household tasks and making lunch, yet at about 2 pm I give up. I feel I’ve spent the whole day so far just trying to pull myself together and yet I need to sleep as I am not working correctly. I go to bed, put on my Vitali- Chi machine and crash. 

I wake an hour later and feel calmer inside. I still don’t want to move and so don’t for almost another hour. After a while I play some Sudoku games while still laying down to wake up my brain and end up staying upstairs until 5pm!

Downstairs I try and sort some urgent paperwork out and look on my laptop for information I need, but the laptop not working properly, and neither is my brain, I cant work out how to sort it out. I can’t cope today and I just want to cry.

Dave cooks and I eat dinner gratefully – feeling totally bloody useless – I have slept most of the day and I still cannot function enough to cook! 

I feel a waste of space, both for my family and myself.

After dinner I decide to cut some of the bushes back in the garden. Dave asks me why and I tell him I need to do ‘something’ productive today, even if it’s just cutting plants.

I give myself a long soak in the bath afterwards and go to bed with my note book. I need to write. 

People look at me or read something I have written and assume all is OK. 
But it’s not. 
If I didn’t have the option to sleep in the day and have my meals cooked I don’t think I could cope.

My tumour is out, my scan was OK, I don’t have any ‘long term’ or ‘severe’ problems. It’s over 2 years ago and so society says I should have ‘healed’ and got over it by now. Yet some days are just really bloody hard. Trying to continue. Trying to forget how I feel, when I don’t feel ‘right’. Having a panic as I wobble. Trying to refocus. Trying not to wobble or drop things. Trying to remember the correct words. Trying not to break down in tears. Desperately wanting to go back to sleep. Struggling to coordinate my thoughts and actions. 

Wondering what I did wrong. 

Did I deserve this? 

Do I do things to make it worse? 

I don’t know.

But today is tough. Damn tough.

Blurry Vision

Tuesday 17 July 2018

Anniversary Musings

It's our 21st wedding anniversary today!!... and Dave asked me earlier what i felt on Facebook - and this was my reply.

I feel …

… A little old. My parents are the ones who can be old enough to be married 21 years! Not us! 

... Confused . I wonder where the time has gone. It doesn't seem 21 years ago. 
What happened to that girl ?  
πŸ€” πŸ’œ

... Sad. As 5 of the much loved people that were at our tiny wedding ceremony are no longer here with us.

 πŸ˜’ πŸ’œ

... Grateful. Fucking grateful to Mr Jones and St Georges Hospital for allowing me still to be here today. 

πŸ’• πŸ’œ πŸ’• πŸ™ πŸ‘Ό

... Amazed. That from all the shit we have been through we are still together.


... Defiant. And a ‘fingers up’ to all that didn't think we would stay together 21 weeks. 


... Proud. That we have the 4 most amazing children. That we created. 

πŸ’—  πŸ’œ

... A bit useless. As I know others think I haven't done anything with my life.

πŸ€” πŸ’œ

... Rebellious. As I don't really give a fuck what others think. 

😘 πŸ’œ

... Intuitive. As that somehow I knew 26 years ago that we had to be together - you and I are our biggest mirrors and lessons in life.  


I love you  πŸ˜˜ 
(though I'd love you even more if you'd listen to me  πŸ˜‚ 😘 πŸ’œ)

our wedding in Corfu

Sunday 8 July 2018

Art and a Wobbly Brain

Today these pictures pop up in my Facebook news feed. 
Memories of 2011. 

When I could paint.

Partly painted picture

Partly painted picture

Partly painted picture

I have always loved copying art work and did these paintings for a friend. I loved it, getting paid to have fun and what felt like a skilled accomplishment. But today it just brings up some pretty strong and horrid emotions. I just cannot paint like this at the moment. 

My brain simply cannot do it and it’s so damn depressing!

I first felt like I was struggling badly with my art in 2015. I had tried copying some simple art work, and couldn't do it properly so made the images more abstract and a bit rougher. I think looking back I had been finding things slowly getting tougher than normal before this, but thought it was as I was doing things slightly different to my usual. 

I had assumed I was going long sighted and needed some glasses. So went to the optician. I didn’t.

Clearly my brain tumour was causing issues with my eyes and coordination long before it was unmissable in the rest of me…


I have painted some abstracts painting since my tumour was removed, but even over two years later my fine detail is still awful.  I cannot even colour easily in between lines of colouring books and certainly not well consistently. 

So today I just sit and sob that I should have done more art years ago- but I didn’t. 
Maybe life got in the way as I let it? 
Maybe I was too scared to fail? 
Maybe I knew inside that I would get a tumour and if art had been my living, the ability would have been destroyed - and with it, me?

But it’s still shite. My kids are almost all grown, three of them are adults, only my youngest needs me as much. There is time for me now and this time should be increasing, time for my art – and right now it feels it’s no longer there. I find it hard on so many levels. Down to the fact that I cannot just go and paint and experience the bliss I once had. The satisfaction.

As it was I chose to have my kids when I was young and my ‘career’ was never a consideration. When I sit and really allow my tears and feeling, I am so glad in so many ways as ‘if’ I had a career and waited until I was older to have children it might never have happened. 

Plus if after surgery I had young children I think it would have destroyed me and my family. 

Personally I would never risk having another child after a brain tumour. I couldn’t knowingly bring a child into this world and then possibly not be there for it. Plus how much of an extra risk would it put on my body? 

So I guess, given the two options – kids or career, I chose the best. It helps me accept my reality slightly more.

Although I didn’t choose my brain tumour, I didn’t choose it to affect my vision and coordination, to affect the thing I wanted to do in my future. I know I might still be able to do something art-wise but different to what I always hoped and planned. 

Today it’s hard to accept.