My friend started chemo this week. Even though I’ve been through it myself, it was hard to know what to say to her. But I knew what not to say. I did not tell her she is brave or inspirational. Because frankly, she is neither. I know she will read this post and I know she won’t be the slightest bit offended by it, because people with who have cancer talk to each other with a level of frankness and honesty that I have never experienced in any other context.
I have the good fortune of belonging to a very small online group of young(ish) women with cancer. We talk to each other about our fears, our symptoms, our treatments and our prognoses. We swear (a lot, and with aplomb) about all of these things, and we support each other with the kind of raw love that only exists between people with horrible shared experiences. We’ve never met in person, but we have the most intimate insights into each others’ lives. We make the most hilarious jokes about colostomy bags and missing boobs, the kind of gallows humour that enables humans to process what may otherwise break us down.
Recently, I was lying in bed late one evening laughing hysterically whilst reading one friend’s story about how, by the time her cancer was diagnosed, she had not done a poo for two weeks. The super strength drugs she was given to get things moving along proved a little too effective, so much so that it was a long time before she again felt able to ‘fart with confidence’. In researching (ie googling aimlessly) whilst formulating this post I actually discovered that there is a company called Shreddies selling underpants with built-in fart filters. The company motto is ‘Fart with Confidence’.
Pretty much as soon as word gets out that you have been diagnosed with cancer, people start telling you that you’re brave. I have to have a mastectomy tomorrow … OMG you’re so brave. My hair all fell out so I ordered some scarves online … wow you’re just so brave. I feel like shit but my son has his first day of school … you’re the bravest person I’ve ever met. NO. No I’m not. It might make you feel better to see a person with cancer as brave because people only get dealt the cards they have the strength to deal with, right? Wrong. When I was in the midst of diagnosis and surgery and treatment, I was frightened, absolutely fucking terrified, and on many occasions mentally and physically incapacitated by my fear. I wasn’t being brave by doing all the things I did – I was just trying to stay alive. True bravery is doing something in a selfless fashion without any benefit for yourself. The soldiers who landed at Gallipoli were brave. Members of the rural fire brigade who drive into massive fire zones to try to save the lives and property of people they don’t know are brave. Having treatment for cancer is one of the most self-interested things you can do, and does not involve bravery of any kind. It is all about survival.
The other thing that the cancer clique (so named because we are exactly like the popular girls were at school, but with added cancer) has discussed is how much we dislike being told, by people who don’t have cancer, that we are inspirational. What exactly is someone who has cancer inspiring others to do? Not get cancer? Because I think that is pretty much the only take home message that other people could have gotten from my experience. I didn’t choose cancer, it didn’t make me a better person and I hate the way it now influences (sometimes subtly, sometimes more obviously) pretty much every aspect of my life. For someone going through cancer, to feel that somehow your suffering is something to be drawn on by people who are not ill to give them the momentum to improve their life is not comforting or heart-warming or flattering. It actually becomes a burden, where the cancer patient feels like they need to be positive and upbeat during a time when just getting out of bed in the morning requires every ounce of inner resolve they have.
So if you’re not supposed to tell a cancer patient they are brave and inspirational, what are you supposed to say to them? Well, firstly, start with asking them how they are, rather than telling them what they are. And when you ask, make sure you are really willing to listen, and maybe then ask a question or two or offer some practical assistance. Maybe a little role play might help here. You be the person who doesn’t have cancer, and I’ll be the one who does. No, really, I think I should be the cancer person because I’m the De Niro of the pretend conversation on a blog acting world. Anyway, firstly we’ll do the what not to say version:
You: Julie, you look so great, I cannot believe you have cancer. You are so brave going out in public in that scarf, I just couldn’t do it!
Me: Oh …. um … thanks. Yep, I am just fine. [I say, as I assume my metaphorical foetal position.]
You: The way you are going on with life as if everything’s normal, well you’re a complete inspiration. We’ll have to catch up for a coffee. Bye!
Me: Thanks so much, that sounds great. [Walks through supermarket like zombie unable to remember what I came for and wondering if I’ll be able to make it back to the car without having to stop for a rest.]
And now we’ll do it the way that doesn’t make the cancer patient feel like they’re letting everyone down by actually being ill:
You: Julie, how are you?
Me: Oh I’m ok.
You: Really? What you’re going through must be tough, how are things going?
Me: Things are tough, I am really tired and the treatment makes me feel dreadful.
You: I am so sorry to hear that. I really would like to offer you some practical help. If you’d like I will come around on the weekend and take your kids out for the day, how about we say 8am on Saturday?
Me: If we really were friends you’d know I only have one kid, but I’m going to let that slide because this is only a role play.
I have hesitated to write this post for a while, worrying that it might come across as mean-spirited or ungrateful. But then I thought about all the poor, poor souls who will today be told they have cancer, and those who will be told tomorrow, and those the day after … and I realised that I needed to publish this post for them. I don’t want you to feel bad if in the past you’ve told someone with cancer that they were brave or inspirational, as let’s face it they probably have chemo brain and will be flat-out remembering how they have their coffee.
I’d like to dedicate this post to the cancer clique – Emily, who will be getting a pair of matching his and hers Shreddies for her wedding this weekend; Elizabeth who muffles her colostomy farts with a stubby holder, Anne whose son wants a pirate themed birthday party to make the most of mum getting around in a jaunty headscarf, Charlotte who feels bad because her hair hasn’t fallen out, Maria who posted the most hilariously unintelligible gibberish on Facebook when she was off her tree on pain medication, and George who is really struggling right now. Not a single one of you is either brave or inspirational. Unlike this lovely cross-stitch: