At regular intervals the question of language, what terms we like and those we dislike with a passion comes up. It's a very personal thing and, apart from a few terms that seem to win universal acclaim or distaste, one person's pet hate can have someone else smiling.
So here, for what it's worth, is my personal list.
Firstly, the dislikes. I particularly dislike the term "all clear"; scans and mammograms can be clear, but we all know that there is no such thing as "the all clear" with this disease. It also brushes under the carpet the whole issue of living with uncertainty. Every now and then someone may say something like "So you're cured now?" or "but you're cured now", but for some reason this doesn't annoy me quite as much as does "all clear" and I feel able to reply with something along the lines of "It isn't quite that easy, I'm afraid".
Next on the dislike list is the word "survivor". I know that it has use in being a neat term to describe the increasingly large number of those of us who have been treated, but it sounds wrong to me. In part I think it is because the word has connotations of an incident that may or may not have gone on for a long time, but is now in the past. Survivors of, for example, a road accident may be living with the consequences but the accident itself is past in a way that is just not so with breast cancer (hence the no "all clear"). I do acknowledge that it is useful terminology for government initiatives for better continuing care but I wish a bit more effort would be made to find another descriptive term. When our hospital group was being told about some plans for a "survivorship initiative" there was a load groan in the room at the word "survivorship".
"Back to normal"! That is another dislike. "I expect you are back to normal now". No, I'm not. Things have changed - forever. Some of those changes are very positive and some are less welcome. I am enjoying life, but it isn't the same as it was - and that is not just due to the aromatase inhibitor and bisphosphonate.
I am uncomfortable with the term and concept of a "battle". This isn't a war or battle to be won or lost. It is a difficult experience with which we each find our own of dealing. I am uncomfortable both with the militaristic language and with the idea that those of us who succumb to this disease have somehow lost or failed. Allied to this is another dislike - the word “brave”. To me, bravery implies choice; such as dashing into a burning building to rescue someone, or a soldier who pulls out an injured colleague at risk to his/her own life. All I could do after diagnosis was get my head down and get on with it.
The final idea/term on my list of dislikes is that of being positive. I know people mean well (at least I think they do!), but injunctions to “keep positive” or statements such as “I know you’ll be all right, you are a positive person” do annoy me. Once treatment started I was positive for a lot of the time, but the last thing I needed was having to keep a cheerful positive image every day for the benefit of other people. There is also another subtle (or possibly not so subtle) undercurrent of blame here; for those who are not “all right” it is their own fault for not being sufficiently positive. It is a way of feeling safe oneself - if it happens to me, I will be fine, because I will be positive.
Enough of the dislike, what terms do I like. Well, I like NED (No Evidence of Disease), of course. We all love good old NED! My oncologist’s letters to my GP have said “no evidence of recurrence” or “no signs of recurrent disease”, which are just as good but not quite as neat as NED. This is so much more honest than “all clear”. To me it is both optimistic and realistic.
I like “new normal” - well I would say that, wouldn’t I? I feel that this term acknowledges the reality while suggesting that things are settling into a pattern of everyday life. Things are different, there is no point in pretending otherwise, but they are normal for me. It includes the idea that things change over time and it allows me to come to terms with the process of change. It makes no judgement about how life is now and how it differs from the way it was. It allows me to think about what I want to do and what I might need to do. It encourages me to think about strategies to deal with things like fatigue, joint pain and appointments.
I particularly like the phrase “living beyond ...” with the connotations of there being so much more to life than cancer while nevertheless including it as a fact of life. Perhaps it also includes the feeling I now have sometimes that I should no longer put off those things that I really want to do.
The phrase I most often use when people ask how I am and I know that they are relating the question to breast cancer is that I am “doing well”. Unless, of course, I not feeling that I am doing well and they are close enough for it to be a genuine question which I wish to answer honestly.
So at the moment this is how I can describe myself:
I am living beyond cancer here in the land of New Normal and doing well with NED!