Chemotherapy..

''Were giving you chemotherapy''
''It's not curable, its manageable''

*Lizzie, hold in the tears don't cry*

''I've printed off a sheet of information about the condition''
*It says macmillan cancer.. what is going on*

''Here you go, have a read, I will monitor you by regular blood tests''

I walked to the hospital pharmacy, sat on a wooden chair opposite the toilets shaking
*who do I tell??*
Holding in the tears trying to think ''Happy thoughts'' I managed to keep calm..
reading a sheet that tells me my condition..
Random words swirling round my head;
*chemotherapy*
*bone marrow*
*stroke*
*shit*
and so on..

All I could picture was my mum when she had chemotherapy for her cancer, and how strong she stayed, she's my inspiration and who I will gain my strength from.

It's not cancer.

Okay so not a lot of people know as I tend to try to keep it all to myself, I was diagnosed with 'Essential Thrombocythaemia' basically a rare condition affecting the bone marrow, I have ''too many platelets' these help the blood clot,

They've discovered it by taking a blood test, my blood range is between 600 - 800 when its meant to be between 150 - 400

It's basically what caused my stroke but has only just been found,

Chemotherapy is a way of managing it for me, as i'm on so much medication they can't interfere and give me anything else;

Hydroxycarbamide; is a tablet form of chemotherapy..

Obviously when I first heard 'were giving you chemo' I nearly screamed, but its not as bad as it sounds..

The side affects aren't as bad as normal chemo, just a slight similarities;
hair thinning
fatigue
loss of appetite


I started it yesterday as I only take three a week as well as iron tablets everyday,

''Oh my god Lizzie, we need a catch up!!''
''Lizzie, whats happened?!?''

I'm going to put it bluntly,
i need REAL  friends, not fake, you can't come into my life then leave like
'the last lot'
as I'm still recovering from a brain injury..

i'm not a 'story' it's just a journey I'm going to have to overcome..
and I wont let it defeat me.

Just a setback

Waiting in rooms full of red leather chairs surrounding the room filling it with a dark presence of what the next step might be..
*calm keep calm..*
We're all in the same position awaiting good news or bad, once the doors labelled 'consulting room' are shut you never know the persons result or story..

I've learnt to cope with the endless waiting and worrying and timings getting mixed up because there always late..
I'm on numerous amounts of medication stopping different things I have wrong with my body, I've lost track of what 'normal' is, the scariest thing about it being, I always tried so hard to become this normal life I thought was normal..

I know my life will always be a blur and probably a test to see how I can cope with different 'things' but it's making me stronger and helping me overcome set backs..

speech and language therapy..

''yeah do you remember when that bridge crashed into that van''
*Lizzie, you've got it mixed up, correct yourself*

''Lizzie, slow down you're talking so fast...''
*oh god, I needed to fit in everything I had to say..*

numerous questions are asked after i'm read a paragraph by my speech and language therapist, sometimes more than once..

*Lizzie, wake up get back on track, try to remember whats being read to you*

''Are you sure? do you need me to read it again for you, as you've completely made that up and created a whole new story..''

*urgh! I honestly thought i'd remembered everything that was read to me, clearly not.. come on brain*

''This exercise is to help with uni, as you need to learn to pick up little details within your work and possibly in lectures, as it will help towards your work''

''You seem in a good place at the moment, less wound up and more calm''


I don't know what happened to my speech after my stroke, apparently ''everyone gets their words mixed up'' but I think people tell me that to make me feel better.. I know the tone of my voice changed.

Things not to say to someone with a brain injury..

people who have a brain injury can be; more sensitive, emotional and unable to control their actions, no one can tell when someone suffers with a brain injury especially if you've only just met them, some people with a brain injury can be quite obsessive and suffer with OCD to the point where they get aggressive when you change their plans,

I suffer with a lot if not all of these problems with my brain injury..
With my brain injury obviously I suffer with physical disabilities so people assume that's all I suffer with..

Things not to say;

"You're basically back to normal"
Most people with brain injuries won't become who they were 'before' normal is a term that offends people with brain injuries..

"You're so strong and brave, I don't know how you do it"
Were not really doing anything accept trying to train our brains as much as we can, reconnecting and reflecting on how to become 'well' we're only being strong because we have no other choice..

"I don't know how you do it"
Do what? We're so confused that we just carry on living how we've learnt to cope with life, the way our doctors taught and trained our brains..

"How does it feel?"
You can't feel much, the emotions come and go, your brain can get frustrated you only feel it in your mind.. It feels horrible to be asked certain things and people assuming you're not 'normal'

"you look the same, I can't even tell"
I can everyday I look in the mirror, pass shop windows or get stares because of how I try to hide the physical disability.

"it must be so hard!"
Don't patronise me, I'm an adult with a child's brain, always learning, developing and growing just not as fast as yours does...

"I read somewhere this person fully recovered"
No one makes a full recovery, it's impossible to create a new brain and life when the brain cells have been so damaged.
Recovery is a life long process


Most people don't know how to react or what to say, I've experienced so many strange comments and smiling at people I once called 'friends' and recieving a look up and down and all I receive is a dirty look, you won't understand I don't want you too, you'd never fully understand but I'll carry on my recovery trying to understand how to train my brain..