NED (a portrait of No-Evidence-of-Disease)

10:09 PM

It is kind of my second time around cautiously treading the thin ice of "life after breast cancer treatments". It's only partly true, because of course now I am a stage four girl and so this will always be life WITH breast cancer and treatments. But right now I'm living the best possible life (if quality of life can be deduced from scans and blood tests and the severity of side-effects). Today it was confirmed to me by my doctor that I get to continue my life as a NED stage IV breast cancer patient. NED is short for no evidence of disease.
This is a huge privilege and a victory against the odds.
This means that in all the places where there was a disastrous dangerous shady mass in May 2017, there's now just scarring and Nothing. the good kind of Nothing. The lovely kind of scarring.

For the last three months (time between scans) I have lived in various stages of certainty and despair. I have been devastatingly certain that the cancer is back. I have spent my days studiously running away from my fears while totally unable to run at all. I have lived a kind of theatre performance, where my physical being has performed normalcy while my emotions and ideas have given me a solo show of nerves, ticks and obsessions. Consecutive common colds, side effects of chemo and other treatments, tiredness from overworking, family life and illness extras have all turned in my mind to warning signals: the cancer is back – you are dying.

What do I turn to then, when I have been so hilariously wrong?
When in fact, I need to address my tiredness and my emotional and physical wellbeing from the point of view of continuing life rather than letting go? When I have to hold on to my messy attachments and my new and old projects and I have to live with a different kind of uncertainty. The kind that holds the uncertainties that accompany terminal illness and the ones that relate to living in general.

Like what if tomato sauce in a can was first informed that her expiry date is in six months but then she would be given an infinite future later on and put on a new shelf with a better view all together?
How would that tomato sauce feel? Or what would it taste like?

I guess I have time to ask myself that question now.
(Last time I got to that stage of asking, I began to write songs for From the Bed and Beyond)
Maybe, during the last six months I thought I better not go there.

So, just to remind myself: I'm not tomato sauce. Not even close. There's still work to be done with definitions. There's writing to be finished and songs to be sung.

And because there's no one else here telling me this right now, I have to tell it to myself:
It's ok to not be so ok, but in fact to be crumbling. Crumbling is a privilege that I can now afford.

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  1. Huh, kuin omasta kynästä. Eka kerta, meitä on niin kovin vähän. <3 T. Se toinen NED-kroonikkosisko

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