The battle of words...

Saturday, May 2, 2015
For those of you that follow the Dear Melanoma Facebook Page, you would know that I do not like using the terms ‘fighter’ and ‘warrior’ when referring to my journey with melanoma and terminal cancer, nor will you ever hear me refer to another person using these terms. This is purely personal, as I know many gain strength from such terms.

A few days ago, I was discussing this with a friend and it prompted me to write a blog about why I do not find strength in these words, but instead frustration. I am not asking people to stop using these terms, but it is important for people following my blog to understand why I may hesitate to be part of awareness activities or conversations that use these labels.

However, most importantly, I want people to leave this blog understanding that everyone’s journey is different. Everyone responds to their diagnosis, or their loved ones diagnosis, in different ways. Everyone has a different way of coping. 
Cancer being a battle or a fight that one must beat has become a popular analogy for cancer patients.  After all, it does make sense - something is invading your body and trying to kill you. Like in war, you must prepare yourself and your army to fight and ultimately win. You need to be the warrior.

I can understand the power in this analogy. Being the warrior in your own story could give someone the sense of power and control in a situation where these feelings are slowly taken away. Being the warrior means that you are active. You have a plan. Your plan is to fight this battle. Fight until your survival… or fight until your death.

This is where my problem and dislike for this analogy begins. What happens when that warrior dies? Have they lost the battle? Did cancer win? We can be real; we know in both cases the answer is simple, yes. Yes, they have lost their battle with cancer. Yes, the cancer did win. However, I know, that I would never want my death to be spoken of in this way. In my opinion, it makes it sound like that person, that ‘warrior’, did not try, or ‘fight’, hard enough to beat the cancer.

What happens if someone decides not to fight? Does this make their death their fault? Since being around other oncology patients, I can honestly understand why people with a terminal prognosis would decide not to keep on going with treatment. I am so lucky that my treatment does not affect my everyday life and I do not get sick, but I know that if my last options, options that would only give me a small amount of time, involved debilitating side effects that would alter my quality of life drastically I would opt not to continue treatment. 

Further, I am asked often if I plan to go overseas and try alternative treatments, treatments that have not been part of a clinical trial and have no proven success. No, I don’t plan to. I will not risk going overseas to try alternative treatments that have no sound medical backing. I will not spend my last weeks or months away from my family and friends potentially putting at risk my chance to be surrounded by love ones in my last weeks and days and missing out on saying my goodbyes. Does this mean I am not trying hard enough? Does this mean that I am giving up? Does this mean that I didn’t ‘fight’ hard enough? Does this make me selfish?

I don’t think that there is any selfishness or lack of trying in my plan. I plan to follow the instructions of my doctor and to keep on going with treatments, but when treatment can only promise a few months of painful side effects, I may indeed decide to stop treatment. This is my way of coping and my way of approaching cancer. (You can get a little bit more of an understanding of my thoughts on my last months in my blog, ‘Hope in Death’.)
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So there it is, my somewhat confusing (in my head anyway) problem with these terms. Terms that can bring so much strength and comfort to people, yet makes me want to roll up in a ball of frustration. And those of you reading this that completely disagree with what I am saying are about to feel the need to throw something at me… Here it is, I hate the word 'survivor', definitely when it is used so freely.

So, who is a survivor of advanced melanoma? Are you a survivor once you have no evidence of disease? Are you a survivor when you no longer need treatment? Are you a survivor if your cancer has been stable for an extended period of time? Are you a survivor if you have been free of disease for five years?

Many would think ‘who cares?’ - all of those situations are amazingly positive for a Stage 4 patient. And, once again, if this gives you strength and hope in your experience, embrace the word survivor and look for those people that you consider a survivor. However, I cope with my melanoma by taking in the reality of the situation and acknowledging the statistics, even though I know that there are indeed people that defy the statistics.

Seeing someone labelled as a survivor makes me put up a defence, because statistics tell me that at some point the melanoma will come back or regress. I feel that labelling people in some of the situations I listed above give people a false sense of security. I know from first hand experience the heartache I felt when someone who had been labelled a ‘survivor’, and therefore I assumed had been cancer free for an extended period of time and their doctors had given them the all clear, passed away suddenly. How could a survivor have deteriorated so fast? I am stable now, what does this mean for me?

I think for people who use social media to raise awareness for melanoma there is danger in creating a false sense of security. It is a balancing act between too much negative news and too much positive. I, like many others, need to hear the positive stories – the stories of people responding to treatment, the stories of people that have no evidence of disease, and the stories of people with stable disease. But, when I read positive story after positive story, I start to get upset and angry about the fact that my lesions do not seem to be disappearing. No one needs any extra reasons to be angry, there is definitely already enough to be angry about.  But, we also have the responsibility to acknowledge the not so great stories. It is not about giving people a reality check, it is about showing people that it is normal to be struggling and that there are other people out there that are still plodding along taking each day as it comes.

I realise that this is a very polarising topic, but I think it is a goody. It reminds us that as patients, and for family and friends as well, we are all different. We cope and deal with illness in different ways. Some people choose not to look at statistics. Some people choose to focus on everything positive and being that ‘survivor’. Others, cope by knowing the reality of the situation and choose to take that information and run with it. For all of you that read the blog regularly, you know that I am one of those people that likes to know the reality, but I do not think this makes me negative in the slightest and I can promise you all that it does not mean that I am giving up or plan to.

I would love to hear what your thoughts are? Where do you fit into this conversation? What terms could we use instead? Even better, have this discussion with your friends and family. Do not be afraid of telling people where you stand.


  1. Great post. Words do have an impact - and I find that many people claim or reject words differently.

    I hate 'suffer from' or 'afflicted with' disabilities. I also hate 'wheelchair bound' because wheelchairs provide freedom.

    Many friends use 'crip' as a way of ownership. I don't use it but I respect their choice and right to use them.

    The words you write of really do determine the way someone handles their cancer. I think when words like 'fighter' or 'warrior' are used, they're used as terms of admiration. The same as 'inspiration'. I, like Stella Young, don't want to be anyone's inspiration, however, I can see that to those who don't live with a disability or illness, the act of living with one (and beating the odds) can be seen as inspiring.

    Great post!

  2. I'm your age and my mum has stage 4 esophageal cancer. She's had no evidence of disease since her last treatment in September. What is hard for her as a terminal patient is when people hear this they get excited and think it's all over when in actual fact her doctor keeps reminding us that it's just a waiting game now until it comes back and when it does that will be the beginning of the end. That really puts a dampener on people telling her she is a survivor.
    I know she also feels a lot of guilt when she sees others with cancer being able to do more than she can. Her treatment knocked her around but the mental shock of a terminal diagnosis has dramatically changed the person she is and her energy levels. She really just wants to hang out in her pjs and watch The West Wing, but feels massive amounts of guilt about "not doing enough".
    I love your blog because it shows not everyone is the same. Some people with cancer completely embrace it and run with it and do amazing things and accomplish incredible feats but for others it's hard enough just getting up and doing the bare minimum.
    I love her to bits but the diagnosis changed her and the fear and depression has really taken a toll on her. I think people can forget this other side of cancer and that it's not all marathons, charity events and fun filled bucket lists.
    I love your blogs and your enthusiasm. It's so nice to be able to read your blogs and to get a little insight into some things that may go through my mums head. Xx

  3. I am a stage IV "warrior" and I don't mind term. As some days, the battle is just inside my own head, knowing the terminal status. But I am also a fighter to bring awareness to people about melanoma, doing my Social Worker degree to help those with cancer. Set up a relaxation garden for people to come to, enjoy and relax in. Fighting for justice in a medical system, don’t get me started on that one. Yes I think I am a fighter. I can understand where you are coming from though Emma. I have no active disease at present and people think I am cured, which is a far cry from what the doctors say “make the most of everyday, you could walk out of your PET scan today clear but it could be back tomorrow”. That to me is most annoying, as you are living with the knowledge of your diagnosis every day, which is often reinforced by the medical system, where's the hope in that. On one side you have people saying you should be happy "no active cancer", flip side is the doctors ensuring you know you are terminal. Today I saw a post on FB saying, “Moving house was one of the worst things people could endure”. Well no, no its not, but to him today it was. I suppose it’s your experience in life that shapes our views. Dana I hear you about your mum, when you are not feeling well, both physically and mentally it’s hard because you do feel guilty and you want to do more but some days are diamonds and the others are stone. I was given a few months to live, when I was diagnosed with Metastatic Melanoma, which was almost 4 years ago. At the time my children were 15 and 11, I was told to prepare them, create wonder memories they said. That in itself is a lot of hard work, to create special memories every day. Today I am just me, the children no longer think I will die and I am very pleased, that they have some peace. I wish I had that same peace, that's not saying I am not happy, its just saying I wish I did not know, what I know.
    Trish - Rockhaven Relaxation Garden -

  4. I believe the term "surviving" is often confused with the term "existing" - or "contiued existience". In my opinion there is an alternate meaning to the word "survivor"; it means you're coping, holding your head above the water, even if you're dealing with something that'll cause you to stop existing at some point. I've also always been sceptical about the terms "warrior" and "battle", because as a patient I often feel I'm not really doing anything but coping- and that's all I can do. I'm not fighting a war... I'm surviving, despite the fact that I might never get better.

    And from what I've seen of you, you seem to be doing the same thing. Your way of coping is by being rational. It gives you the clarity you need to keep on surviving (in terms of "coping" or making the best out of things). I truly respect you for that, and even though the truth is harsh and brutal, it's also comforting to strip away the analogies and metaphors.

    You're brave and strong, Emma. And you're most certainly not selfish. Facing the facts and dealing with them is not giving up. It's a strategy of life.

  5. I really admire people like you Emma who are able to express their thoughts and feelings in such a lucid informative way in the very challenging time you are facing. My daughter had the sme gift and her talent with words and expressing herself still helps us. Your blog and story will make all your followers live their lives in a richer, more fulfilling way.
    You are doing everything right.

  6. Emma, well written post. I totally agree about the mystery of the cancer "survivor". Have you read anything by Paul Kalanithi? I feel you would appreciate his work!


  7. It's interesting how the words 'she/he lost the battle' or she/he is a survivor are bandied around particularly in relation to a person with cancer. It's probably more visible a disease, with chemo/radiation treatments. I guess when people see us walking around having treatment over a great period of time, it must seem we are 'battling' the disease. My melanoma treatment for my stage IV had been going well, until the last CAT scan showed spots on brain, no symptoms, such as headache so it was a shock. Have just finished 10 blasts of radiation and am feeling a little down as I am losing my hair two days after the treatment has finished. What a shock! I know I shouldn't feel sorry for myself as there are other people much worse off than me. As a female it is hard to accept. Anyway, just have to get on with it. Grin and bear it. Bought a couple of lovely scarves from a little Indian shop. Thank you Emma for your fine words.

  8. Thank you. My 18yr old son has stage 4 melanoma. We live in a close knit community of upper class families. Suddenly upon diagnosis my son was this amazing very popular guy in the spotlight. Fundraisers, bracelets, his name on the highschool intercom to come support...his picture in the newspaper...Well, he is really private. He has been humbled by the love and support!! It has truly blessed us all and he appreciates it very much! But it's been really hard for him! He doesn't like the attention at all. He doesn't want people to know much. He won't allow me to give updates on Instagram etc. He says he wishes his friends could treat him like before cancer. His melanoma is growing daily. In 10 mo it went from a spot on his head to liver, lungs, spine, bones, muscles, and now daily tumors we can see on his body. He has suffered a lot. Biochemo, radiation, 5 surgeries and now keytruda. Our community was shocked and some confronted me about him taking 2 months off treatments. His choice. He graduated high school. Did a couple trips. Was normal. No pain. No hospital. He lived just as he wanted! He isn't giving up. He doesn't blog. He doesn't even talk to me(which is impossible for me). I asked him why all the "no cancer talk"? He said flatly-everyone is different mom.
    And there you go. He is beautiful. He is amazing. He is strong. He is fighting. He is sure. He knows the odds. He is smart. He is very capable. He gets to choose how to do this. You all do. He didn't choose to have this at 18....he isn't some hero all of a sudden. Some days he is pretty jerky in fact. Most days he is kind. He wants to be out like before all this. But he isn't much. He is just a good kid who got dealt melanoma. It sucks. But he is making the most of it best he can. It's an individual journey. It's our job to love you and help you do it however you choose:) thanks for being yourself!

  9. I was diagnosed with stage 4 malignant melanoma age 20. Shoulder, lymph nodes all out, brain surgery, radio, 12 more in the lungs, chemo, prognosis 1-2 years. I'm now 31 with 2 kids and a 3rd on the way because i accepted the possibility of death and met it head on. I changed my attitude, my diet, became selective in the people and conversations i allowed into my life. Surviving isn't a position, it's a process. We all do it, cancer or no cancer. And we are all fighters and warriors with our own battles and our own enemies. I think the terms are endearing and 'the media' does what the media does best, hype the terms up and alter their meaning. One other point is that we are now part of the media which is a privilege our parents never had so let's not squander the opportunity to right the wrongs.


Thank you so much for your comment. I really appreciate you taking the time to connect. Emma x

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