Talking about cancer…..

You may have already seen, you may not have – Macmillan have recently launched a campaign centred around discussing cancer and moving away from using the standard cliches. They got a whole lot of people together who have/had cancer to read out some common reactions we all tend to get from people and then react to them on camera.

You can see it here:

I am well aware that my main contribution to this is eye rolls… Know your strengths and all. Some really brilliant people in this with some great opinions.

The response to this amongst the cancer community has been overwhelming. It has started so many wonderful conversations, and everyone is very much in support of it. Last I heard it had reached 28.5 million people, but I’m sure it’s more since then.

I think Macmillan have been quite brave in posting this. Some people aren’t going to get it. And there has been some backlash from people who are defensive of being told they’ve said something wrong, who grumble ‘I won’t bother saying anything to you then’ (and I think I’m probably opening myself up to these reactions too). But people who think that aren’t listening. That’s the whole point of this campaign. To share our views. To put it out there how these phrases can come across, and the pressure they put on us to fit into society’s ‘healthy’ mould and denial of anything bad. This is constructive criticism, not a witch hunt! This is us getting the opportunity to open up about how we feel about the words used by the media and society. We are not calling out any one person, we’re not saying anyone doesn’t mean well, we are trying to educate the world on what it’s like for us. We know a lot of people have never had to speak to people with cancer before (neither had we!), so it’s exciting to be able to have these sorts of conversations. And let me add at this point that this whole campaign is based on a survey of 2000 people with cancer, looking into what words/phrases they do/don’t feel comfortable with.

I know I’ve talked about it a bit before, but I would like the opportunity to discuss all of this in a bit more depth. But let me say up front that if you read this and realise you have used some of these words or phrases, don’t think I am blaming you. Please don’t take offence, just listen. Use this as an opportunity to take onboard the thoughts of us folks who are amongst it all. You can help to propagate better language and lift the pressure we feel. And we will thank you for it!

Quick disclaimer, some of these things I am discussing have not been said to me, but people I know have had them a LOT. So they were worth a mention. Some of them might even make you chuckle at the thought anyone would think of saying them!

So much of the language people use around cancer is forcing certain emotions on the person with cancer.

Telling someone that having cancer is a ‘journey’ is telling them they must enjoy it and grow from the experience. It’s telling them you only want them to say how great it’s been as opposed to speaking the truth of what they’re going through. ‘Experience’ or ‘story’ are much better words, even ‘ordeal’ is a good one. I like ‘adventures’ or ‘escapades’ so for me those words are fine, but think twice before telling someone being treated for the worst illness they’ll have is some sort of journey. As Mandy says in the video, a journey should involve a plane ticket, a passport, and a cocktail waiting at the end. Not an IV of cytotoxic drugs, extreme illness and surgery. As we learnt from Victor Frankl, there is meaning in suffering. Far be it for us to deny that positives come out of the experience. But to be told that it must be a journey and we must grow as individuals and be grateful for the insight is hard work.

Be positive’ is one of the most dismissive things you can say. Yes, it definitely helps during treatment for your general mental health to stay optimistic as opposed to wallowing in the bad things and the ‘what ifs’. But if someone tells you some bad news, or mentions that they’re finding it hard, don’t dismiss their concerns by just telling them to ‘be positive’ as opposed to actually listening. It is saying you don’t want to hear anything about it, and that they must always hide the realities they face that cancer can kill and the treatment and surgery is scary.

Actually the other day someone I know messaged me saying ‘Getting up to the usual shenanigans now you’re all better?’ I said I don’t know about ‘all better’, I’m still kind of still in the middle of it with two more surgeries to go. And I’m only just building up some strength. But i’m doing ok. They then proceeded to say to me ‘well I’m going to be positive even if you’re negative, I’ve had a bad year so I can’t take your negativity. I’ll send you positive vibes, maybe they’ll help you.’ Now I’m all for positive vibes, send away. But I didn’t realise I needed to lie to make you feel better… Noted to edit what I’m allowed to say to that person. And I hope you guys know I’m not ‘negative’ purely for being realistic.

Did you know that cancer is a chronic illness? For example I am now covered under the disability act for life. For most of us there is no such thing as ‘all better’, there is no ‘full recovery’. And a lot of us struggle more when treatment finishes than we did even during it. 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 takes away from you. Yes, permanently. And ongoing problems from surgeries, etc. And certainly 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. A lot of people struggle with being told by people they’re ‘all better now’ just because their cancer is removed when the reality is that they still have a lot of issues to be dealing with. You get so much support as you’re going through it, and as soon as people deem you as ‘all better’, the support stops right when you’re really struggling. The pressure to seem ‘all better’ makes people feel isolated especially and unsupported. Chronic illness is a lot more complicated than ‘sick now, better now’.

It puts a lot of pressure on us when we’re told to ‘stay strong’ all the time. It’s telling us that we must never show weakness, struggle or vulnerability. I think people often use it just to say ‘I’m thinking of you’, but it leaves us thinking ‘I didn’t realise I was being weak, or if I am, that I wasn’t allowed to be’. There is nothing ’strong’ or ‘weak’ about being treated for cancer, we’re all just coping as best we can.

I met someone the other day and mentioned I had cancer (lol yep apparently I’m that girl) and she immediately said ‘oh you’re so strong’. She didn’t even really know me, I had spoken to her for a little while at the pub… What was it I did that was particularly strong? Maybe it was for the fact I had drunk three pints? 😛

I know some people who feel like they keep getting lots of empty compliments since they got cancer, because ‘you can’t say anything bad about the cancer person’. But I think this feeling stems from the fact that we are called a lot of these words purely for the fact we have a disease, and we aren’t particularly any of the things we keep being told we are. It makes it all seem a bit empty.

I never liked ‘fight‘ from the beginning. I wasn’t sure why it was my role to cure my cancer by doing some unspecified amount of fighting. I wasn’t really up to any sort of boxing match, I didn’t sign up for UFC. As a friend of mine who is an advocate for getting cancer drugs to patients who need them says ‘just relax and get your chemo. Leave the fighting to us’. Telling someone to ‘fight’ their cancer is telling them it’s their own responsibility to cure themselves. Now, I am aware that this is one that really divides people. I get that some people like to think they’re taking control of they situation in a world where you lose all control. I get that thinking they can fight their own cancer implies action and control.

But by continuing to use this language, the pressure that is put on people who get a terminal diagnosis is immense, or anyone who gets bad news (like chemo not working or their cancer returning, which is a possibility for all of us). The media loves to use the headline ‘Lost their battle’ when someone does die of cancer, thereby saying they are a failure, a loser just because they were never able to be cured of it. That they didn’t fight hard enough to save themselves. People with cancer already have enough guilt for putting their loved ones through all this, without also being constantly told it’s their own fault for lack of fighting. We never say people lose their battle with a heart attack, why do we say people they lose their battle with cancer?

This also paints people with cancer as victims, and the last thing we want is pity. We’ve all had someone do the head tilt and say ‘Awwww‘ when we mention we have cancer. Yes it sucks, no we don’t want this, but we don’t need to be pitied.

Also please, I don’t want to know that you sister’s aunt’s dog’s wife had cancer and died. Why is that ever going to be a good thing to tell someone who is diagnosed with cancer?!

Brave‘ is often followed by ‘I couldn’t do it’ and implies that we have some sort of a choice.  Choosing to do something that others find scary is brave; brave is an emotion we put on people in line with our own fears. Having an illness treated to delay death is not brave, it’s living. I’m ok if you think I’m brave for going in front of a camera or recording a podcast or playing a gig or moving country because I understand that it’s something you are scared of and wouldn’t want to do. I absolutely love it, there’s nothing brave in my choice to do it. Whereas I think you’re brave for deciding to run a marathon. But you might not, it’s something you happily decide to do. Are you getting the picture? As soon as you say it to someone who is just living whatever life they’ve been given, it’s pity. Some days I push myself out of my comfort zone and do things that scare me, but that’s making a phone call (terrifies me!) or asking for help. But having cancer or having the treatment you’re given has no correlation with being brave or not.

Also saying that you couldn’t deal with all these needles because you have a needle phobia? Or maybe a fear of hospitals? And you don’t know how we do it? Well we don’t either, we also have a needle phobia or a fear of hospitals. We’re no different, we just have to manage somehow.

I would hazard a guess that a societal history in telling children to be brave and not complain or cry has had an unintended negative side effect of making (especially) men think they can’t get help for symptoms of depression. Of course this then translates to suicide being the single biggest killer of men aged under 45 in the UK, with 75% of all suicides being male.

Inspiring‘ is an interesting one. I know a lot of people struggle with this, none of us feel very inspiring for the sole fact that we are going through cancer treatment. But I do like to think that some of the things I write might inspire someone. That I inspire for the things I do in the face of adversity. But I know ‘inspiring’ can be seen as a demand that the person with cancer must always inspire as they go through it. I know people with disabilities don’t like to be told they’re inspiring just for trying to live their life, this picture springs to mind:

Survivor‘ is also problematic. My friends who have terminal cancer, are they not survivors? Or are they survivors until they die? Do you only become a survivor if your cancer goes away? ‘A person who had/has cancer’ is a better phrase. Or someone who is ‘living with cancer’. You might not realise, but people live with ‘terminal’ cancer for many years these days. 1, 5, 10, 15 years… and it’s only getting longer as treatment gets better. Now that people are no longer just being cured or just dying, we need to change this terminology. You don’t necessarily ‘get better’ and become a ‘survivor’ but you might not die either.

Do you see how emotive all these words are? You’re either a winner or a loser. Either a warrior or a coward. Either strong or weak. A survivor if you’re cured or… dead, I guess. Nothing in the middle. It’s tiring! And we seem to spend a lot of our time managing the emotions and feelings of the people around us who use these overly emotive words all the time. We just want to face the facts and take one day at a time and we’re suddenly being told to be positive or happy or devastated or strong or whatever when we really just want to manage emotions instead of becoming overruled by other peoples’.

We also don’t want to know about a scientist in Israel you heard about who has a miracle cure that works on every type of cancer, these types of articles are usually based on theoretic/experimental techniques in one strain of cancer under laboratory conditions, and is usually only a potential. Even if a miracle cure is found, it will take a long time to get to the market because a LOT of testing and research needs to be done before it can be given to humans. These types of articles play with our emotions, we are working towards better conditions for people living with cancer, not for a cure. Also don’t tell us that we should be eating lots of Kale/turmeric/cbd oil instead of chemotherapy. ‘Have you tried…’ is never welcome, we are doing the correct medical treatment for our cancer, it’s patronising to assume we’re not doing everything we can. And don’t even get me started on ‘did you know the government has a cure for cancer but they’re hiding it from us’. Yes, people legit say that. Or blame it all on ‘big pharma’.

Don’t tell us ‘aren’t you too young?’ – We know. (Actually while almost everyone I know gets this one, I don’t, as the demographic for my cancer is children and dogs so…)

Don’t ask what we did to cause our cancer. No I didn’t smoke and no it’s not genetic. There is no known cause for my cancer. It is nothing I did, it is not my fault. I know you want to know what I did that you can avoid but unfortunately cancer doesn’t work like that and you can’t cancer proof your life. You are just as likely to get it as I was, I’m afraid.

All right. That was a lot, I know. Which leads us to……..

So what should you say? Unfortunately there is no easy answer! I know, we don’t make it easy do we!

Listen to the person to see what words they are using rather than putting your own words on them and deciding what they must feel.

Ask someone how they are and listen, rather than tell/ask them if they’re all better.

If someone is worried about scan results, don’t tell them it’ll be all fine thus berating them for worrying. 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, 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, tell them you’re thinking about them that day.

How we feel is so personal, please don’t decide for us.

And please don’t pity us.

If you’re not sure, just ask! I won’t bite and will be more than happy to discuss why some things might come across as insensitive. And you know what? I don’t always know what to say either! I just try to listen and adapt to each person. I’ve got one friend who likes people to say ‘I’m so sorry, that’s really shit’ in response to her bad news, and other who hates people saying ‘I’m so sorry’ because she feels pitied. But I listen to everyone and make an effort to remember what they prefer and speak to them in ways that will support them. And if I can do it with a hell of a lot of friends with cancer, it shouldn’t be too difficult to do if you’ve only got one or two.

It is also 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 if someone tells you they have cancer and you don’t know what to say, tell them that! It’s a way better alternative to saying nothing.

I would never blame anyone for saying ‘the wrong thing’, I know people mean well, but I want to transform the way we talk about cancer and chronic illness as a society to make it easier for those who are going through it. For so long illness has either been something that you get better from or you die. So it absolutely makes sense that so many of these thoughts and phrases have been the go-to. But it’s no longer the case, people are living with chronic illnesses now, since medical advancements have led to us living for so much longer post diagnosis.

Let me also add, more just as an interesting note, I have heard quite a few of these words and phrases being used for people with other illnesses and disabilities, including diabetes, and most recently my friend’s husband has had a lot of these things said to him after finding out he’s got some heart problems. So tackling this in relation to cancer has practical applications even way beyond the realms of the 50% of us who get cancer.

If you want to hear more, I spoke a bit about the campaign twice on BBC radio (though I’m sure most of it is overlap to what I’ve just written):

I was also in my local newspaper, though they managed to sneak ‘survivor’ in there.
http://islingtontribune.com/article/upper-holloway-cancer-survivor-advises-on-what-not-to-say

If in doubt it’s safe to steer clear of saying:
Oh you have cancer? My aunt had cancer and she died. What caused yours? 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!

4 Comments Add yours

  1. I was going to leave you a long reply, but I think it’s going to be a whole blog post worth! Thanks for sharing 😊

    Liked by 1 person

    1. Jen Eve says:

      I’ll look forward to reading it!

      Like

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