The day I was told I had an aggressive cancer taking over the bones in my face, I became ‘brave’. I was 29 years old and I had just come back from raving in an abandoned soviet prison in Latvia. I didn’t do anything to deserve this title other than stand in a clinical room with a dental chair in the middle and a brilliant view of the London skyline, and hear the words ‘I’m so sorry, it’s cancer’.

Brave /breɪv/ adjective;

  1. Ready to face and endure danger or pain.
  2. Endure or face (unpleasant conditions or behaviour) without showing fear.

I was not ready to face cancer. It was not my decision, it was thrust upon me. Sky diving is brave because it’s a choice. That’s something you can be ready to face, should you decide to do so. But not cancer. I am truly suffering as much as you think you would be. And to have no fear when faced with having chemo for 24 hours/day, 5 days/week, or finding out you’ve got to have half your face cut out, or that the damn thing has come back two years later would probably make you a robot. I am human. Flawed, hopeful, terrified. I find joy where possible, I try not to dwell on the worst of it for fear of being pulled under. Not brave, scared. But coping. Because there’s no other option.

Almost immediately, people started referring to my illness as a journey.

Journey /ˈdʒəːni/ noun;

  1. A long and often difficult process of personal change and development.
  2. The act of travelling from one place to another, especially in a vehicle.

People seemed to avoid acknowledging that my cancer was a life threatening disease, they wanted it to be some enlightening period of growth. If I wanted a process of personal change and development, I would have joined a monastery, sailed solo around the world, or walked the Camino. Cancer is an illness, not a self help book. Alternatively, a journey might involve a plane ticket, a passport, and a cocktail waiting at the end. Not an IV of cytotoxic drugs, extreme illness and surgery. But we humans love to sugar coat other people’s suffering to make ourselves feel better about it.

People struggled to really listen to what I was going through. I’ve always been candid about my experiences through cancer, but the same response kept cropping up:

Just be positive!

Trying to stay optimistic and hopeful where possible can help with mental health during treatment. It can even help with quicker recovery after surgery. But unfortunately, cancer cells don’t care how positive you are, it doesn’t stop them from rapidly dividing. Meeting someone’s very real concerns with demands for constant positivity is dismissive and unhelpful. Denying the reality of a situation doesn’t help anyone, and toxic positivity causes more harm than good.

And if it wasn’t ‘be positive’, there were many other iterations, like…

Stay Strong.

Constantly appearing ‘strong’ is a lot of pressure. And I’ve always been unsure what this request is asking for. That I must never show how much I’m suffering? Or admit any form of weakness, struggle or vulnerability? There is nothing ’strong’ or ‘weak’ about being treated for cancer, we’re all just coping as best we can.

Are you all better now?

Cancer is a chronic illness, meaning that people who have it are covered under the disability act for life. Many people actually struggle more once treatment finishes, when they have the space to stop and realise what they’ve just gone through. The pressure to either slot back into life as if nothing happened, or quit your job and ‘follow your dreams’ is constant. We have to face fatigue like never before, varying degrees of anxiety and depression, some people get PTSD, and there are a lot of physical things you used to be able to do that chemo or surgery takes away.
With my type of cancer, there is no such thing as ‘remission’, we just keep checking and hope that at the end of 5 years it hasn’t come back (spoiler, it did). You get so much support as you’re going through it, and as soon as people deem you ‘all better’, the support goes away. Chronic illness is a lot more complicated than ‘sick now, better now’.

And then there is the constant war language. Oh, my kingdom for an end to war language.

Fighting cancer.

It’s never been my role to cure myself using some unspecified amount of fighting. Chemo really knocked me around, I wasn’t really up to any sort of boxing match, I certainly didn’t sign up for UFC. I just needed to rest and accept the treatment. I know this word divides people. I know that some people like using it so they can feel like they’re taking control of a situation where there is none. But by continuing to use this language, we’re putting so much responsibility and pressure on people who are already having a hard time, and even more on those who get a terminal diagnosis, or anyone who gets bad news (like chemo not working or their cancer returning, which is a possibility for everyone). If we die it isn’t because we didn’t fight. It’s because we had cancer and the treatment failed us.

Losing a battle.

The slew of media headlines after someone dies of cancer all read that they ‘Lost their battle’. We can’t just die, we must be painted as losers. We never say people lose their battle with a heart attack, why do we say it about cancer? No one lost any battles, passed away, got lost, or went to sleep; they died. We can’t keep fearing that word. And we can’t keep painting people as failures in death.

I don’t want to know that your sister’s aunt’s dog’s wife had cancer and died. That’s not as helpful for me to know as you might think.

You’re so inspiring.

No one feels very inspiring for getting cancer or accepting treatment. I do like to think that some of the things I write might inspire someone, that I might inspire for the things I do in the face of adversity. But I know ‘inspiring’ easily tips into inspiration porn. I know people with illness/disabilities don’t like to be told they’re inspiring just for trying to live their life. Plus it’s hard work to always have to inspire. Some days we just want to sleep and watch TV.

There are some words that I’m given, but I don’t know if they’re meant for me.

Cancer survivor.

Are those with a terminal diagnosis not survivors? Or are they survivors until they die? Do you only become a survivor if your cancer goes away? Mine came back, so am I a survivor? I’ve not really ‘survived’ it, I’m still going through it, but I’m still alive at present… People can now live with ‘terminal’ cancer for many years. 1, 5, 10, 15 years… and it’s only getting longer as treatment improves. Now that people are no longer just being cured or just dying, we need to change the terminology. You don’t necessarily ‘get better’ and become a ‘survivor’ but you might not die either.

And no, I didn’t cause my cancer. There is nothing I could have done to give myself cancer at such a young age.

Did you smoke?

Even if I did, it’s not relevant. There is no known cause for my cancer. I know you want to know what I did that you can avoid doing, but unfortunately cancer doesn’t work like that. You can’t cancer proof your life. You are just as likely to get it as I was, I’m afraid.

So if people can’t say any of these things, what can they say?

  • Listen to the person to see what words they are using instead of deciding for them.
  • Ask someone how they are and actually listen. Try not to dismiss them even if it’s uncomfortable for you to hear.
  • If someone is worried about scan results, don’t tell them it’ll be all fine. Rather, acknowledge their fears, remind them they don’t know until they know and that you’ll be hoping like hell for the best.
  • Send love, and hugs, but don’t send prayers unless you know this is what they want (but do whatever you like in private).
  • If you know the day of something big (a surgery, a scan, etc.), send a message to tell them you’re thinking about them that day.
  • It is OK to say you don’t know what to say. Sometimes it’s hard to find the words or know the right way to react so just admit you don’t know. And it’s a way better alternative to saying nothing.
  • ‘Experience’ or ‘story’ are much better words than ‘journey’, even ‘ordeal’ can work. I personally love ‘adventures’ or ‘escapades’ so for me those words are fine. Probably not for most people.
  • ‘A person who had/has cancer’ is a better phrase than a ‘cancer survivor’. Or someone who is ‘living with cancer’.

If in doubt it’s safe to steer clear of saying:
Oh you have cancer? My aunt had cancer and she died. What did you do to cause yours? But you’re so strong, you’ll beat this. You just need to fight, then you’ll be a survivor and you won’t lose the battle. Don’t say you’re scared, you’re an inspiring brave warrior. And don’t worry at all, just be positive!

An earlier version of this article appeared originally on The Cancer Chronicles.