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’.)
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.