Tag Archives: sarcoma

An open letter to Low

Dear Low,

I was talking to my husband about you a while back and he suggested that I write down what I’d said, that you might want to read it. So here it is.

We were talking about favourite Low songs (so hard to choose, you guys spoil us so) and I mentioned Shots and Ladders. He was surprised that it meant so much to me. But when we first started listening to your music, around the time Trust came out, my brother was seriously ill. He had been diagnosed with an incredibly rare sarcoma and had undergone some serious treatment, given by wonderful NHS staff with serious faces. Their faces told me as much as I wanted to know about what our future looked like. I spent a lot of time travelling to and from the town where I lived to London, hanging out in hospitals with my brother or keeping him company at home while he recovered from spinal surgery and underwent chemo that made him sick in every way. And travelling time is always good headphones time, so there was a lot of listening done.

Trust seemed like such a mysterious thing to me. All that space, all that power, that wonderful echoey production. The many references to illness intrigued and comforted me. It was like having a knowing friend along for the journey, one who didn’t bullshit me with upbeat smiles but didn’t look away in fear either. Your voices wrapped me up and offered succour and salvation without any annoying platitudes on the side.

I made my brother a copy, compelled to share the music I loved as we had both always been with each other. I don’t know if he ever listened to it. The cancer was eating his future and after a while he stopped wanting to think about new things.

I thought a lot about him dying, during the two years he was ill. It was pretty obvious that that was what was going to happen. Sarcoma is rare and not much understood, and the kind he had was particularly difficult to treat. I watched it strip away his life a bit at a time – his ability to work, his ability to walk, his interest in the world that would no longer be his – and wondered what the final scene would look like. Shots and Ladders came into my mind a lot. I loved the feeling it evoked of being funnelled up into a massive twister of sound, the essence of a person dissipating as kind voices said soothing things. I wondered if it would be that way for him, or if it would be a horror film kind of ending. I was very frightened.

My brother died in a hospital bed on the top floor of UCLH in London. The top floor is really high up, you can see all across the city from there. He slipped away over the course of five days or so, surrounded by people he loved. It wasn’t scary in the end, as I had feared – I mean, it was, it was awful, but it wasn’t like being in a horror film. It was peaceful for him. The last thing we talked about was Jimi Hendrix. I was there as his last breath hushed out and no more breath went in, and afterwards I went into the corridor and leant my face against the plate glass window, looking out at the clouds, thinking of Shots and Ladders, imagining him streaming into the sky.

When I listen to it now, I think of him, of that moment and how it wasn’t the nightmare I had feared but a horrible honour. Your music helped get me through that. You gave me a way to reframe a dreadful experience before it had happened.

That’s not the only thing your music has given me, obviously. But today is the 6th anniversary of his death and it was on my mind, so I hope you don’t mind me writing it down.

Looking forward to the Barbican gig on Tuesday!

Yesterday

So yesterday we were supposed to go for a picnic to celebrate with some friends on the first birthday of their little boy. But mum and boy were ill and the weather turned up shit, so picnicking was off  which at least saved me the bother of having to be vigilant about ticks (agreed venue was Bradgate Park, home to many deer and thus many many parasites). Instead we packed ourselves into the car and took a wending road trip through Leicestershire’s villages to Twycross Zoo. Little B seemed much more interested in the human specimens wandering around, but Mr and I had a lovely time examining the monkeys and apes and taking great lungfuls of animal air. We stopped in a cafe so Little B could throw his lunch around; we marvelled at how constructed and dinosaurish giraffes look in real life; the rain fell, on and off. And then we came home.

What we didn’t do was drive down to London to celebrate with my brother on the occasion of his 37th birthday, because my brother is no longer here. He didn’t even see 35. Mesenchymal chondrosarcoma came and ate him all up. How long was it in there, curled around his spine like a soft, patient slug, sending out its heralds to the lungs and leg and optic nerve? We don’t know, will never know, just like we’ll never know what activated it or why it had to be him, my big brother, my kind, loving friend. Cancer took him away from me and the thought of living the rest of my life without him makes me feel sick.

Happy birthday Simon. I know life is busy and I’m full of joy at raising my wonderful son. But I miss you every single minute of every day. I can’t put you in the past because I can’t bear the idea that you are not with me. The cancer grew in you but it left its shadow behind in all of us. Our faces are not the same and the knives in our hearts will never come out.