Chemo naps

11:49 AM

Photo by Tekla Vály

I cannot begin to tell you how thankful I am for you people for being there. You, who read my last week's post and commented and sent personal messages – thank you. It was a difficult week, but your messages gave me another perspective: I didn't feel so completely lost and alone. Your responses and eagerness to read urges me to write more, to write from the exact point of where I am.

Honestly, for a moment the surprising avalanche of readers also made me hesitant in my head: what can I say or what should I say? How often should I update? The editor-in-me woke up when she noticed an audience and tried to silence me until I could say something polished and brilliant. Until I could package cancer and my life as a neat little organic cotton bag with a cool logo...

I say to that editor: this is blogging. You go continue your endless chemo nap.

Unfortunately, it wasn't only the editor in me who went for a long nap, it was me too.
Because after Monday and Tuesday (when your body still sort of runs on the cortisone infusion) comes Wednesday bringing weakness and the kind of sleep that keeps swallowing you back. With the weakness, sleepiness and increasing pain comes struggle: talking hurts and there is simply not enough energy to engage in a discussion. Sentences become short (and appear more rude than they are meant to be) and writing becomes a nice idea – yet, very far from the reality of my days.

The chemo week trundles by in slow-motion. I am living, but as a spectator (thank you streaming services for making this part a little more glamorous by pretending that I have an endless choice of what to watch). I keep knitting and watching, making plans and then realizing I am too weak to follow any of them through. I am at home, but I have no ability to take responsibility for anything, run errands, cook, or to put my child to sleep. I don't even see the house the same way I see it usually. Dust and disarray become invisible. Food tastes of paper and I don't want to eat it. I love sleeping while hearing the sounds of my family in other rooms. In my room their voices become too loud.

To try to describe how I am during those worst days: imagine having a stomach flu, a cold and depression all at the same time. Then add the mental image of the nearness of death, the fact that I can never just brush this off as a thing that will pass, like a cold would. Enter the void.

I pretty much remain in the pit for seven days. This time there was an added sense of not belonging: it was the midsummer weekend (Juhannus) in Finland. It is the celebration of the precious summer and light. Now it just became another layer of disappointment and anger at myself. I could not participate or create lovely meals, let alone go outside somewhere in the evening or visit people. We were all trapped at home. Still, it was a cozy intimate weekend and one day I mustered up all my energy to make pancake for dinner. You see, when you are a chronic-cancer-patient-mother of a five-year-old, you'll crawl out of almost anything to make the pancake that will signify love, care, normality and celebration. He is my inspiration to literally and figuratively always always always at least attempt to get out of bed.

And now, it is Monday. I am entering the life I lead for two weeks between treatments. What a crazy contrast there is between these two phases. The slow darkness and now brightness and joy. Sunshine and strawberries, gigs, work, love, laughter, friends, adventures (for festival shows and in the near-by areas). At times in the next fourteen days I won't even remember that I am seriously ill (people will remind me though). I will consciously try to forget. I will just live. Like when I'm on stage at Provinssi next Saturday. Just singing in the moment. Because you know what: it's still just me. Just me in here.

Maybe the point I was trying to make with this post is that writing from the eye of the storm – the thing while it's happening – is particularly challenging with illness, because language is a form that disappears quite easily. When I encounter pain and suffering, it intensifies my being in the body but it complicates expression through language. Here I am, trying anyway.

If you have questions or topics you would like me to write about, I would love to hear your thoughts!

I for example am not so interested in the particulars of metastatic breast cancer and my individual case, but is the medical reality something that is interesting to you? I have noticed that people have very little knowledge about metastatic BC (even the people I am living with, hah!), so maybe that's something I should attempt to describe as I am learning about it whether I want to or not.

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