Saturday, 3 March 2012

I have Ewing's Sarcoma-what?!

Sunday the 5th of September 2010 would prove to be the first of many sleepless nights in hospital. I arrived at Birmingham sometime on the Sunday afternoon, as my biopsy was due to take place on the Monday morning. At the time I thought I was coming to terms with being diagnosed, but looking back I don't think it's something you ever really accept, it's just something you have to live with.

I went for a meal at a pub called The Cock and Magpies in Birmingham (it sounds hilarious in a West Midlands accent unfortunately, so probably not the best name for a pub in Birmingham!), with both my family and Sarah's on the Sunday evening. This would be the last time Sarah would see me with a full head of hair.

The ward itself had been done up by the Teenage Cancer Trust (more on this amazing charity later and what you can do to help) and it also happened to be the place I first met someone else with bone cancer. He was called Sam and he was 14. I never saw him again after my time in Birmingham, but I would love to know how he is doing and I hope he's still with us. It was somewhat surreal for me, to sit and talk to someone in the same place as me, but it definitely helped me. We both reassured each other that everything would be fine, even though neither of us had a clue about what we had!

The biopsy went ahead the next day and they took a small chunk of my tumour. I asked if they'd take out a bit for me to have a look at (don't even ask why I wanted a piece of my tumour..) but apparently they're not allowed to just give out bits of tumour! Following my biopsy I went back home in the evening, with the biopsy results due in just over a week's time, on the 14th of September.

I started sixth form on the 9th of September 2010, feeling horrendous and wondering what the point in it all was. Was there any point in getting out of bed if I was dying? I began to tell more people about my diagnosis. It was like some sort of nightmare. The worst bit must have been people asking if I would be okay. I didn't know for certain and I was terrified of the thought of dying.

On the evening of the 14th of September I received a call from the hospital in Birmingham with the results of my biopsy. I had Ewing's Sarcoma, a very rare type of bone cancer. I was one of only about thirty people diagnosed with it in the UK each year.

Naturally I did the first thing I do when I don't know something. I googled it. Below is what I found out.

Ewing’s sarcoma is named after Dr James Ewing, who described the tumour in the 1920s. It's a cancer that can develop anywhere in the body, although it most often starts in the bone. Any bone can be affected, but the pelvis, thigh bone (femur) and shin bone (tibia) are the most common places.

Fewer than 30 children in the UK develop Ewing’s sarcoma each year. It usually occurs in the teenage years, and more commonly affects boys than girls.

Five-year survival for localized disease is 70% to 80% when treated with chemotherapy. Five-year survival for metastatic disease can be less than 10%.

I knew mine was metastatic. I now understood why they'd told me not to look it up on the internet. As I would find out in the next few months not everyone follows the statistics, every single cancer is different.

I also found one out one more thing. Ewing's Sarcoma usually responds well to both radiotherapy and chemotherapy. I knew that it would be hard. Some days I would feel like giving up. Some days I would question if it was worth it. But I knew there was hope. A small light in the very very dark place I was in at the time. 


  1. People are now asking me, when is Nick doing his next blog?

  2. I'm trying to get one out every few days, so much stuff to cover though!

  3. Hi Nick, I'm a friend of Ian & Ali Massey. Ali mentioned your blog on facebook. I'm enjoying reading it (which sounds weird, but you've got a great writing style). My husband had cancer 10 years ago (and recovered!) so it is striking a chord with me. The story of the Celebrations chocolate made me laugh out loud.

  4. Thanks Andria, I must admit I was a bit worried my writing wouldn't quite be up to scratch when I started but from what everyone's said it must be! Glad to hear your husband is doing well, it is something that affects a lot of people, both young and old. The Celebrations story is certainly a story which will stay with me, unintentional comedy in the face of grave adversity!