Talking about Cancer: "My Journey" with bees, flowers & lots of dog poo...

For a while now, I have wanted to write about “talking about cancer.”  I talk about cancer a lot whether it is to my family and friends, doctors and nurses, other people with cancer or even taxi drivers. I talk about it a lot because at the moment it is part of my life, it’s by no means the only thing in my life but it has a big impact on me and my loved ones.

How we talk about cancer is an interesting question and it’s something that I reflect upon often. Things are obviously changing and cancer is now spoken about much more than it was in the past. Public awareness of cancer is much greater, patients share their stories of diagnosis and treatment much more openly due to support groups and social media and everyday you can guarantee there will be a story or report about cancer in the media. There is much more openness about the disease, however, in my experience many people still find it difficult to talk about or don’t know how to talk about it. It’s not an easy subject to talk about because it carries with it so many emotional and difficult things and what may help one person may really upset and distress someone else. Some people find it helpful to talk about it and some people really don’t. I’m firmly in the first group, I would much rather talk about it than not.

I have found that as someone living with cancer, the disease is often spoken about using metaphors and there are many**. People use metaphors all the time to describe what is happening in their lives. Metaphors are tools to tell stories. They help people to try to understand and come to terms with what is happening to them and they also help when you are trying to explain to someone else what the situation you find yourself in is like. They are also used by those who want to be supportive and offer advice. Here is where it can get complicated because some people may find a metaphor helpful whilst others find it upsetting and so it's important to be mindful about the language that we use and be guided by the person we are talking and listening to.

"The Battle" and "The Journey" Metaphors

The most common metaphors are “The Battle” and “The Journey.” Many people find the battle metaphor empowering. I see and hear this quite a lot. People feel empowered by the idea they are fighting cancer. I have seen many things written about “Cancer Warriors” and people’s “Brave Fights.” Cancer is the enemy, the invader, the thing to stand up to and confront. Type in “gifts for cancer patients” on google and you will find so many items for sale that relate to this. I have seen so many mugs with things like “Chemo Warrior”, “Cancer, you picked the wrong woman”, or jewellery that says things like “Heart of a Fighter” or even candles that have quotes on them about the battle. Talking about cancer in this way does give some people strength and makes them motivated and feeling like they can cope. My husband recently said to me that even though he thinks there are issues with the battle metaphor, for him it’s useful and helps. He says in war situations you must feel isolated and frightened and yet you are with people who share those experiences and understand how difficult things are. There is a comradeship and solidarity amongst those in that have shared experience of trauma which is hard to explain to other people who haven’t experience of it. This means that it can be realty helpful to talk to others who have experience of cancer or other illnesses and disabilities.

For me, however, I struggle with the battle metaphor in so many ways. I don’t like how when someone dies of cancer they are often described as “losing their battle.” I find that very difficult. Seeing cancer as a battle can sometimes make you feel that if you aren’t “winning” then you are doing something wrong. It also sees cancer as an invader when I don’t see it that way. My body is making my cancer cells, it’s actually been rather good at making them unfortunately, so to see cancer as a battle feels like I would be fighting myself.

I have used metaphors to describe cancer to my son (see my blog post.) I didn’t want to use battle or war metaphors as they just seemed scary and also not like me. I really would never identify myself as a “Warrior” or a “Fighter,”. I’m the complete opposite and my son knows this. Instead, when we talk my son and I often talk about my melanoma cells as “having a bit of a gathering” and that they are trying to cause a bit of trouble. I describe my treatment as my immune cells knocking on the doors of those gatherings and telling the melanoma to “keep the noise down.” With my son, we always try and find humour -  metaphors are a great way to do this. Usually, when my immune cells are talking to the cancer cells in these metaphors, they do tend to swear a bit…

"My Journey Metaphor"

For me, I prefer “The Journey” metaphor. I know it’s used a lot and has its own cliches, but I find it much easier to relate to than “The Battle”. It also fits into how I understand my life and how it was before. Before all of this “Melanoma Shizz”, I was 41 and on a familiar path that I could see in front of me. I had a plan with my husband, Matthew about where that path might take us in the future, and I saw lots of things ahead to look forward to. Then, I was literally picked up (a bit like when you pick up a SIM in a computer game) and plonked down on another path. I had no idea where I was. I didn’t choose to be there; I didn’t like where I found myself and I had no directions of how to find my way along it. I wasn’t sure if I would ever return to my original location and some of the signposts looked ominous. The weight of my situation felt like I was carrying a heavy, bulky bag (if you know me, you know that I always have a handbag full of rubbish anyway) but this bag I was carrying was bloody heavy and was not of my choosing.

I’m still on this path – we could make it sound a bit nicer I suppose by calling it “Melanoma Avenue” – is not easy to walk on. It’s rocky and I have tripped up a few times. Whereas before I used to buzz about in all directions, I now feel it’s a bit of a slog. Sometimes there are hills to climb, and I never feel like I will ever reach the top. At other times it feels a bit easier going. I’m not on my own on “Melanoma Avenue”, I have people who are with me and walking with me (I often have to ask them to slow down) and they support me. My family and close friends help me along the way – they help share the load of that bloody heavy bag and they help me navigate a way through. The medical team are there and help me by giving me better equipment to help me continue more comfortably. There are people on this journey with me who also have cancer - we talk and hold one another up when we need to. Some of them are a little further ahead than me and they show me the way and hopefully those behind me are being guided by me too.

Occasionally people I meet along the way, don’t know what to say. They see that I have a heavy bag and they tell me to “Keep Strong” or “Keep Going” but they aren’t sure how to help, or they have their own bags to carry, and they don’t have the capacity to help, so they just shout the words to me and walk on. Then there are those who just don’t say anything and carry on walking past me.

The journey metaphor does get challenging and upsetting when you find out that fellow travellers have finished their journey. Death is another subject that is often spoken about in metaphors. We are all headed to that destination, but some of us feel much closer to it than we feel we should be. For me, I see it on the horizon (much closer than it was before). That doesn’t frighten me, but the road just before it does. I don’t want the road to get much rockier, I don’t want the burden of the heavy bag I carry to get heavier for my family and I to carry.

But, to try and look at things in a brighter way, the path does have some nice things on it – my path does have flowers and trees and obviously there are bees. There are countless coffee shops along the way for chats with my friends and I hope they can feel they can tell me what is going on in their lives too.  I hope that they know they can tell me if they need help, because everyone’s journey can be difficult at times.  My little dog also keeps me company, she loves to sniff the path and chase squirrels and she makes me laugh.

But this path - this “Melanoma Avenue” - is not one that I have chosen; it’s a difficult path to navigate I can't walk it alone. And, although there is much to be grateful for on this journey, it is littered with what can only be described as an abundance of dog poo (that I often step in…!)

 Further Reading

 ** When I was writing this blog post, I found a really interesting piece of research by the University of Lancaster. Their work focuses on how people with experience of cancer (patients, carers, health professionals) use metaphors to talk about cancer. They devised a "Metaphor Menu" where you can see what other people use to talk about their cancer experience. https://wp.lancs.ac.uk/melc/