Friday, 2 March 2018

Stable, angry, and proud.

'I’m stable,' I tell my counsellor. 'Have been for over a year now.' I'm saying it, but still can't quite believe it. 
'That’s fantastic,' she replies, smiling with a warmth I swear I can feel on my skin from across the room.
'I saw some new scan photos,' I say. 'Actually, do you want to see?'
Then I'm kneeling on the carpet in front of her, swiping through my photos I took of my neurosurgeon's computer at my consultation the week before. I happily point out the wonderful man’s reflection in the screen.
I eventually return to my seat, and the counsellor says 'thank you for sharing. It’s amazing – I’ve never actually seen photos like that before.'

When I leave the building and walk along the little street and up the hill towards the car park, I can’t stop thinking, why? 
Why did I show her those photos?!

*


(Photo: Erin Veness)

My lovely friend Jack says, as we’re walking back to his flat after picking up our respective takeaways, 'I was looking through my leaver's book recently and damn girl, your writing was shot!' He then thanks me for writing in it, says he felt mean for asking me to, back then. But I remember the day he did – and I remember looking down at my twitching right hand, then up at his book and pen, and I snatched it from him and focused all my energy and I wrote the tiniest but most truthful message, just one sentence, and it took me about 10 minutes. And it looked awful.

'Oh, please can I see the book? And re-write my message for you?!' I almost squeal in reply. 'I really, really want to.'
After our dinner(s) and an episode of Drag Race (obvs), I am presented with the book – and a little scrap of my past life. I stare at my childish scribbles, and I grab my favourite blue biro, and I write it out again, on a fresh page.
I take photos of the 'before' and 'after', then of the two pages side by side. Over the next couple of days, I will keep opening my Camera Roll and looking at them.

But why?



*


I’m taking a phone call with a journalist from a major news channel; she wants to set up a Skype interview with me to be broadcast live on TV the next day, around lunch time. The reason she contacted me is because of the fantastic news that the government will now be putting £45 million into brain cancer research. Having worked with The Brain Tumour Charity, I am very aware that until now this research has only received 2% of funding. So this is not just a major news story, but an enormous and exciting leap forward – it could mean the worrying amount of late or incorrect diagnosis will end, awareness will be raised and that more lives will be saved. Brain tumours are more common than you’d think, and they are the biggest killer of those under the age of 40. Every day, 29 people in the UK are diagnosed with one. I am telling the journalist all of this, and thinking that while I’m not necessarily keen to get my face on TV (particularly with this current bout of hormonal zits), I’m desperate for the chance to talk about the illness, and my charity.
'So, tell me about your journey with this,' Journo Lady says. 'What exactly do you have?'
I say all the usual key things: pilocytic astrocytoma, low grade, two operations, radiotherapy, no chemo. Lodged in left temporal lobe, too risky to remove it all, etc. I even throw in the impressive thing I learned recently – that I may be one of very few who actually have this particular...thing.

'Wow. So...do you have cancer?'

I pause. 'Every brain tumour is cancer,' I finally reply. 'But each tumour is different, and they are never benign or malignant – instead they are graded as to how they behave (i.e. how fast they grow and how likely they are to spread within the brain). Mine is Grade One, which is good, but it's been particularly hard to treat. I'm able to live with it, and I don’t have, ermm, a time limit.'
Journo Lady thanks me, and asks me to text her with full details. I hang up and do so, then receive a reply saying 'there’s been a change in schedule...but thanks for your help.'
And I am totally crestfallen. I message my pals at The Brain Tumour Charity – having set up a call with them to discuss what to say in the TV interview – and tell them not to worry, there’s apparently been a change in their schedule. I am then told by them that the journalists 'wanted someone with a higher grade.'

They wanted someone with a higher grade.

Higher grade, here meaning: more cancer. More drama. More exciting. I actually shouted incredulously at my phone, then: 'So...I’m not cancerous enough?!!'


I rarely get angry, these days. I just get sad. This is something I’ve spoken to my counsellor about – sometimes I feel brief flashes of anger, but they are always extinguished quicker than one can whisper 'bury it' and then I fall down a black hole of misery, and there I will wallow. But on this day, after this ultimately fruitless, cancerous conversation, I am fury itself.

Why, though? Why am I so angry about this? What’s this I’m feeling, now? 

I finally worked it out. The reason I showed those images to my counsellor. The reason I rewrote a message for my friend. The reason I ranted and raved and threw shade at the ludicrously insensitive journos working for Sky News – because I am proud.

At the moment, I don’t have a lot of the things in life that people typically take pride in. I don’t have my own place, I am not climbing any career ladders, and I am very, very single. In the years since graduation, all I have done is...survive. I am now living with what remains of a brain tumour and I've beaten a few other things besides; I've carved a life for myself in amongst the wreckage, and I've built myself back up from the rubble.

On New Year's Day, I told myself that this is the year I will not be letting this unwanted resident in my brain be my whole life any more. It’s not going to be ‘my thing’ any longer. When people ask me how I am and what’s going on, I will tell them about my freelance work and blogging, my charity work and, yeah, probably share some anecdotes involving the family cat. That’s it. I am having reconstructive surgery this year, but I will not be posting about it on social media. I don’t want that attention any more. I don’t want the first thing people think of when they hear my name to be ‘the girl with the brain tumour’. Because sure, it’s still in there and I’m still having regular check ups etc., but it’s not my defining feature. It’s not my definition. It’s not all of me.

However, this does not mean I can’t be proud of it. Of myself. And finally, after so long hiding and burying, I am coming out and screaming about just how f*cking brilliant I am.

(yes, I am definitely crying intermittently as I write this)

I’m proud I continued to handwrite, despite losing almost complete control of my right hand, in the months before my diagnosis. I’m proud of my Creative Writing dissertation grade (75%), which I received despite the fact that all 10,000 words of it were typed with one hand, and my creativity was quite cloudy in those days. I’m proud that I performed a whole Shakespeare play at the Theatre Royal; that I stood onstage with my bad balance and twitching arm.

I’m proud of walking into the operating theatre, head held high, and turning to wave to my family before they closed the doors. I’m proud of pushing myself out of bed after just a couple of days resting and walking with physio nurses up and down one set of stairs, for what felt like hours, but was in reality probably just 20 minutes. I’m proud of taking myself to and from the toilet – much to the envy of all the old ladies on my ward.

I’m proud of going outside with a bubble of brain fluid, trapped under my skin, protruding under my fringe. I’m proud of posting a selfie on social media when my face was twice its usual size (although that may have been due to the post-op adrenalin/orally administered morphine). I’m proud of the dent on the left side of my head – which some people have kindly referred to as a ‘dimple’.

I’m proud of all my work with the fantastic charity who have helped me get through every horror and over every hurdle. I’m proud to wear my Young Ambassador hoody, and hold buckets to collect change at fundraising events.

I’m proud of my brain. For coping. For repairing. For keeping all of me inside it.

I’m proud of me.


(Photo: Erin Veness)

I’m currently raising money for The Brain Tumour Charityand my local therapy centre, Counselling Plus.

I will be doing this by shaving my head, mid-March.

Please donate whatever you can to either; my JustGiving page is in aid of the former, and message me if you want my PayPal or bank details to give something for the latter. Either way, you’re helping people with misbehaving brains.



EDIT: It has just been announced that I'm shortlisted for The Brain Tumour Charity's 'Influencer of the Year' award (for their 'Celebrating You' Awards, ceremony taking place in April). I am of course completely delighted and more than slightly desperate to win - and you readers can help!!

The awards are 100% voted for by the public; please CLICK HERE for the 'Influencer of the Year' nominee list, and vote for Grace Latter!

If you need convincing, watch this video of me (very brightly lit and only a little awkward) and see why I deserve to win.
Thank you!


8 comments

  1. Oh grace, this post was so beautifully written! You have been through so much, and so you should be proud of yourself and your brain. Blow that trumpet girl and toot your horn, you are a successful survivor and an even more amazing human being. Keep thriving girl! :)

    Heather Xx
    100waysto30.co.uk

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    1. Thanks so much, gorgeous Heather. You're an angel.
      xo

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  2. Oh darling and we are so proud of you. Proud of who you are and what you are achieved. Your story with the media is oh so familiar. When I was doing the PR for a children's hospice, it wasn't built yet so we were busy raising money so it could be, but everytime I went to the media with a new story all they wanted was a dying child and wouldn't understand that there was so much more to the hospice than that. Sending you my gorgeous Grace the biggest hug in the world. A world that is all yours xxxx

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    1. Thank you, my fabulous heroine Ness.
      The media can be so hideous, it's such a shame, but we mustn't let it get to us. We're better than that!

      All the love for you xxx

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  3. So in awe of you, Grace. You are constantly killing the game. To steal your own words; "quite simply you are everything I want to be" xxx

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  4. Grace, you are incredible. You have everything to be proud of, you're an incredible writer, friend and human. Keep being a fucking badass

    Sarah x

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    Replies
    1. Sarah, you're a superstar. Thank you! Hope to see you soon, darl.
      xxx

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