I'm still here & Why my cancer is not a tragic news story

9:48 AM

Photo by Tekla Vály 

So my last blog post was amazingly well read after the Finnish media wrote sensationalist news stories based on what I wrote. An avalanche of concerned people contacted me thereafter wishing me well and suggesting what ever help they thought I might need. Cannabis oil, purifying of the soul, Jesus, diets and special healing energies... you name it, I have been told it cures cancer.
While some of these approaches felt supportive and helpful, mostly they were intrusive and unnecessary. The media told 'my story' emphasising tragedy; they presented metastatic breast cancer as a heart-wrenching news story. Journalists had to work rather hard to turn my blog pontification on life and death into sellable headlines and pathetic sounding last goodbyes... even my Instagram photos became companion pieces to online news feeds. And people came flooding to read this blog.

Because of the unexpected reaction of the media and the responses of readers I have had to take a few steps back. I needed to consider what I am doing here and what I want to say. What I know is that I don't want to be silenced. I don't want to shut my mouth even though not sharing would be a simple way of avoiding misunderstanding, misrepresentation or the burden of unwanted attention.
My writing is intended for you and me. For us – the people who are going through each day with struggles and still waking up to see something beautiful in life.

I don't blog so that media reps can write fast tragic reference pieces without asking me and with no intention to interview me. I'll give you an interview if you ask kindly and with intelligence! Together we can have a magical conversation. Still, my feelings are hurt when my blog posts become the fuel of headlines, or when I have to spend my time deleting messages from concerned citizens who are mistakenly thinking that I am not being helped by medicine and hospitals.

Writing this blog helps me with my thoughts and feelings. It is helpful to share glimpses of my life in their imperfect fleeting state – because I don't have time to wait for some perfect amalgamation before I say something. Through writing I feel less lonely. I also realize that a stranger may stumble on this page one day and find something she needs. That's enough for me. By writing my blog I hold on to the idea that something meaningful may come from this difficult passage of time. So I will continue.

Why my cancer is not a news story

So I'm still here, even though it hurt me to be so exposed. I'm here and I am not looking to become a news story. I am not looking for an alternative cure either. I am not desperate or hopeless.

I am in good care, hopeful and supported.
With a lot of luck, I'll be around for years to come. No one knows.
But right now I am doing what I love: music, writing, researching, performing, eating, walking, talking and sharing. I feel lucky to be me.

I have energy and time to get annoyed by how little people know about metastatic breast cancer.
I have good reason to want to change this, to make people aware and to demand more research funding, more support and more awareness. It is time that the pink washing of breast cancer ends and we acknowledge that BC is a big killer of women – especially its young victims.

Living with cancer does not make me special, news-worthy or sensational. It's unfortunate to be ill, but there are many of us. And I am special, but not because of my illness. There are increasing numbers of young people living with cancer. Every third person in Finland will have cancer at one point in their lives (go to Syöpärekisteri for research and statistics in Finnish). There are many families losing a member each week. Yet, when cancer hits at a younger age, it appears tragic and uncommon. But is it really?

Living with cancer is tedious, boring, repetitive, like a dance on a tight rope but also like a stay in a windowless room. Living with cancer is just that; living. It is the weight of very bad days, pain and suffering. It is moments of joy – long stretches of happiness. Living with cancer is making the abnormal into routine and going with it. Forgetting that I am ill, then remembering again. It is learning to ask for help and expressing my boundaries, and accepting that all of this changes anyway.

It does sound dramatic when I tell you that I am living with chronic illness for which there is no cure. But this does not meant that there is no treatment. There are all kinds of targeted medicines, chemo, radiation, hormone therapy and so on, it's just that they aim to slow down the disease, but cannot cure it. Still, many patients with MBC are exceeding their prognosis by years. So there is hope that something comes along in a few years and changes the life expectancy for me and my sisters. Yes, there is hope.

I am getting ready for Flow Festival in a week's time. It's going to be special. I hope to see you there.
A week ago I had the honour of doing a show at Meidän Festivaali with Stina Koistinen and cancer researcher Suvi Savola. We had a wonderful time! Thank you!
You'll be able to hear the new composition I did with Stina for the Meidän festivaali show at some point this coming fall. These are just some examples of the amazing and lovely things I get to do and the people I get to work with because of cancer... Life is bittersweet.

Oh, and here's a video of what not to say to someone with cancer!
And here's an article on the same subject by The New York Times.

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