Survivor? You talking to me?

Dr Susan Love has written a blog about how she feels about being called a survivor now that it is about a year since her bone marrow transplant.

I have written a couple of comments, and so have many others. The thing is, can any of us be called a survivor of cancer, and is they a one-size-fits-all term that would be acceptable to everyone. My main problem with the term Survivor is the Pinkness of it. Survivor brings to mind the rah-rah cheerfulness of a cancer fundraising walk/run where there are cheer leaders to get everyone in the mood and a lot of talk about beating cancer. Unfortunately that is just what it is; a lot of talk. Survivor is also about that who have ‘beaten’ the disease and won the ‘war’ – oh how I hate that analogy. If anyone ever says that I lost my battle with cancer I will come back and haunt them!

In many ways I am a survivor because I am still here five and a half years after my Stage IV diagnosis. Isn’t it really those of us living with incurable cancer who are really the survivors, and not those who have had treatment and are in remission. As I see it in many ways they are just lucky. The Pinkness of being a Survivor is also about the illusion that the treatments have been successful and that concludes the whole thing. It is about the illusion that it now can’t come back because the individual is a Survivor. As Dr Love writes ‘getting through a hurricane or tsunami, meant that you were a survivor’ but now being a survivor has become something of indeterminate length rather than of a specific event. When do you stop being a survivor of cancer and just become someone who once had cancer?

What I dislike about the term Survivor is that it has been taken over by those who have an early stage diagnosis, and excludes those with a late stage cancer diagnosis. It also implies a certain amount of blame and a sense of failure for those whose cancer progresses, as you say “We would stop looking at women with advanced disease and wondering what they did wrong, as if the outcomes were totally under their control.”

A diagnosis of incurable cancer is not a lifestyle choice like choosing to have a boob job, or a facelift. Nor is it as a result of something that we have done wrong by choice. Many of us have done the wrong things without even knowing it – lived by electric pylons, been exposed to certain chemicals, eaten certain foods … heck, even the experts don’t know what causes this, but we didn’t do these things with the express aim of developing cancer. Survivorship excludes those with Metastatic disease because they are not going to survive, but let’s face it, there is no one term that everyone would be content with.

If survivorship is going to be made a reality for far more people, there needs to be a lot more emphasis on research into advanced stages of the disease. At present only about 3% of the breast cancer research budget is dedicated to Metastatic Breast Cancer, the other 97% is used for early stage research which just might happen to have some uses for MBC. Yet 30% of those who have a breast cancer diagnosis will go on to have a progression to Metastatic disease. Another 10% are diagnosed at Stage IV (MBC). And yet this stage only gets 3% of the research budget when I believe that this is the stage that causes 100% of deaths from breast cancer?!

Hope this makes some sense. It is 4am in the UK and I can’t sleep!

I just wanted to add that there will never be a totally acceptable word. Some MBC folks hate the idea that you could die from something else, like being hit by a bus (hopefully we would have noticed that large vehicle before there was a problem), others like myself are ok with it.

For me the problem with the term survivor is that it has been usurped by the Pink Ribbon movement and if you don’t fit their criteria of Pinkness then you are not included. Since when is surviving only about being ‘cured’? Since when is surviving only about being Positive all the time and since when is surviving breast cancer only about being female? Just as cancer does not discriminate on the grounds of age, gender, race, religion, sexual orientation etc. then there should be no discrimination based on the Stage of disease that you have. Early Stage cancer just means that you are luckier than those with Late Stage cancer, but we are still the same on every other level.

Is there really a word that we can all identify with? Survivor, thriver, METAvivor, warrior? It is a bit like a crossword puzzle where the clue can have different interpretations. Straight – does this mean a line without any deviation, that someone is not a criminal, that they are not gay …? You just can’t please all of the people all of the time. For me it is doing what is right for me, because ultimately that is all that I can do – find peace with myself and the world around me.


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