What not to say.

TW: cancer.

Words are powerful. It's quite amazing how many we have at our disposal when writing, reading or conversing; how we're sometimes able to write our feelings down perfectly in letters, directly quote books or authors that have inspired us, and express ourselves effectively when talking with loved ones. 

And sometimes, we simply have to grab a pen and highlight a snippet of prose that speaks to us. We call our best friends after a few drinks to tell them how much we love them. We create a blog when we're crippled by the most intense crush on the cutie in our college Drama class (just me? Okay...). 

But it's also astonishing how sometimes, words can fail us. How quickly we can forget what's been said. And how some words can stop us dead. 

Words like 'cancer'.

(Photo: Erin Veness)

Last week, I went to a blogger event at the Maggie's Centre connected to St Bartholomew's Hospital. Maggie's are a wonderful company, setting up spaces for those being treated for, or recovering from, cancer. Their ethos is just as beautiful as their spaces; they want to give people a specific place to get support and just be in themselves, alone or with friends, away from the busy world. 

The event I attended was intended to bring bloggers together for a tour of the space and a general intro to Maggie's as a company; we listened to lovely speeches, then were invited to share our own experiences with cancer, and discuss how we all felt about the undeniable power of words. 

I have a lot to say when it comes to talking about tough topics generally, but especially when the topic is my health. And I've actually spent a great deal of time over the past 4 years thinking about what I'd like people to say when we're talking about my various illnesses - in particular, my little brain bugger. 

It varies, you see. There are days when I don't want to hear any mention of the thing - I dread it coming up in conversation with someone, having to explain what it is and what happened and where I'm at...ughhhh, on these kinds of days, I cannot think of anything worse. I will even strain my eyes trying to beam powerful 'don't mention that don't mention that don't mention that' vibes at everyone I come into contact with, just in case. 

But then there are days when it's all I want to talk about. On those days, I genuinely wake up so full of pride and excitement about myself and my journey - my trauma - going through that horrendous ordeal and living with the consequences, it's all I can do not to talk about it with everyone I meet. I feel myself swell with happiness when strangers do double takes in public, shocked by my shaved head and then very obviously peering at the perfect, hairless line that runs along one side. I grin and bounce on the balls of my feet when someone is brave enough to approach me and ask what I've been through - just the other day, in a local cafe, a man joked that he'd like to feel my skin fade; I let him, while telling him about my craniotomy ops, plural.

(So, I just Googled 'craniotomy' to make sure I was spelling it correctly and ohhhh, the images that appeared...!!) 

(Photo: Erin Veness)

Yes, my willingness to talk about my experience with cancer is not consistent. It also depends who I'm talking with, I guess. For instance, I can always tell who genuinely wants to know how I'm doing in mind and body, and I can definitely tell who is just asking to tick a box and say they did it. No offence old school friends, casual acquaintances and fellow residents of my tiny town who I hardly ever see - I mean, how could you be properly concerned for me, a woman you barely know who you may only recognise due to her frequent appearances in the local paper and down the pub? 

Anyway, the key issue I have when talking about my illnesses is the language used. This was a big theme of discussion at Maggie's the other night - what do we hate people saying, and what do we wish they said more? Well, all of us definitely felt the same way about the media's coverage of cancer; it's always referred to as a 'battle', that people are fighting, beating...or losing. 

The wonderful Alice May Purkiss spoke to the group about her experience with breast cancer, and after telling us her story she pulled up some headlines about recent celebrity deaths to illustrate just how keen the media are to present a cancer diagnosis as a violent thing, a fight that has to be won. I have harboured feelings for years now - I had them even before my diagnosis - that cancer should not be represented this way. Mainly because, in my opinion, if someone dies from cancer, they haven't lost a battle. They did their best, damn it, they put up with a horrible health situation as long as they could, and that's a win in my book. I'd personally be properly p*ssed off if (as I suspected it would, up until recently) my tumour struck again somewhere down the line and finally succeeded in bumping me off, and then the following week's paper would say 'Grace Latter - finally beaten by her brain cancer' or 'G-Lattz; a battle lost...in the town of Battle'... (guys, idk why they don't ask me to be official Headline Maker at the local rag, tbh)

Don't even get me started on my coverage in the media, though. I actually stayed longer than planned at this Maggie's event, so I could have a good old moan about my most hated word used to describe me annoyingly often: survivor. 

(Photo: Erin Veness)

That word is particularly irritating in my case, because fortunately I was never given a death sentence or a time limit. I'm a 'low grader', albeit a particularly tricky one, and apart from the risks of surgery in 2014 and 2015, I was never going to definitely die.

And as the wonderful folks at The Brain Tumour Charity would say, I'm 'living with'. I have a teeny bit of tumour left in me, and it'll be there forever. I'm being checked up on every 6 months, I'm having reconstruction, and that little blip will always exist not just in my head but on my medical record. I'll have to tell future employers, colleagues, partners (lol) and friends. I didn't 'survive', I coped and now I'm living. 

Yes, the word 'survivor' grinds my gears. And at the Maggie's event, another woman piped up when I said this, telling the group about the time her local paper called her a 'dying mother'. How hideous is that!? 

Spurred on by others sharing their worst wordings, I told my little anecdote about a certain news channel looking for the most dramatic headline imaginable - and how I couldn't give it to them, as I wasn't cancerous enough for their liking. The collective groan from my fellow sufferers (which is another stupid word, actually) was immense, and actually made me smile quite a bit. Because in that moment I realised, there really is nothing quite like talking about your worst experiences in life with people who have been through something similar. I felt so understood and so...normal in that moment, that I shrugged off my backpack and silently decided to get a later train home, so I could get more of that beautiful feeling. So I could spend more time with these people whom I barely knew, but who really, immediately got me. 

(Photo: Erin Veness)

So, here are some quick guidelines for what not to say when you want to ask about my health: 

• Survive/survived/survivor.
• Battle; fought, lost, or won.
• Inspirational/inspiring/#inspo.

I've never intended to be inspirational. And actually, I often find that the people saying that word to me (or more often, posting it in a comment on Facebook, suffixed with lots of kisses and heart emojis) is doing so because they don't know what else to say. 

• Positive. 

I'm only positive because I have to be. Because that's what comes naturally to me. To paraphrase a brilliant analogy my GP gave me once: Wile E. Coyote chases Roadrunner off a cliff, he keeps running through the air, and it's not until he stops and looks down into the chasm, realises he's propelling himself through the air, running on empty and with a whole heap of sh*t below him...that he falls. That was definitely the case for me, and for my mental health following my surgeries and treatment. Alice and I agreed; you get a diagnosis, you clap your hands together and put your head down and you just...go. You run right through it, smiling for everyone around you as best you can, taking the pills and bearing the hurt, and as soon as it's over you can wallow in the enormity of what you've gone through. But while you're in the middle of it, you have to keep running. 

Oh, can I also include in this list a particular form of unspoken communication? Cool. I want people to stop asking 'how is...everything?' while gently raising their eyebrows, tilting their heads (much like Richard in 'Friends' said his mates would do to ask about his divorce without actually saying the word 'divorce'), and even nodding at my head or swirling a finger half-heartedly around their own skull. I told the group at Maggie's that I quite like to respond to that pointed question (on a day when I'm not wanting to discuss it) by casually saying 'oh yeah, I got a new job' or 'well the family are thinking about moving house'...that always leaves the awkward askers nonplussed. 

(Photo: Erin Veness)

I know what you're all thinking now. Well...what CAN I say?!

The truth is, I can't tell you for sure. All I know is what I don't like hearing. I'll always appreciate being asked gently how I'm doing, and being given the opportunity to talk about my health, rather than feeling it's an elephant I have to acknowledge. 

The other bloggers at the event:

Alice

George

Bonnie

Cara

Lucy

Jolene

Deborah

Emilie

Emma