Nicole's story

I was diagnosed with a large Peripheral nerve sheath tumour at the top of my spine in August 2000, at the age of 11.

I had an operation to remove most of the tumour at King’s College Hospital in London, then had 8 weeks of daily radiotherapy at The Royal Marsden Hospital in Surrey. I had check-ups and scans for 18 months after that, then started to get pain in my back. I had several different tests, but they couldn’t find out what it was, so I had another operation at King’s, which discovered a ball of engorged blood vessels. It was too dangerous to touch, so it was left.

Six months later I had a brain haemorrhage. One of the blood vessels had burst and travelled to my head, causing the haemorrhage. I spent the next three months at King’s. During that time I had a stroke so I’m now disabled. Lack of oxygen to my brain has also left me totally blind. I had an operation which found that another tumour had been growing under the blood vessels. I had nine months of chemotherapy after that, which I had in tablet form because I have a massive fear of needles. It lasted over a year and I had it at home, but it wasn’t expected to work.

I was in remission for two and a half years, then relapsed again last September – a few days before I started college to do an English GCSE course. Both my tumours had grown back. I started a much tougher chemo course this time. I had a Hickman line fitted which helped a lot with my needle phobia, even if the line did keep getting infected. I had six rounds of chemo which I had as an in-patient at The Royal Marsden Hospital. It’s a great hospital (good food!), but there was a lot of small children there, and not much for teenagers to do. Luckily I only stayed there for four days every three weeks for IV chemotherapy.

I finished my treatment in February 2007, and I’m now in remission again. My last scan showed my tumours had stayed the same size. I missed practically all of the first six months of college, but I still took my GCSE this year, and got a B grade. I was five marks below an A which was really annoying! I want to be a columnist or journalist, and have a career in writing. I’ve already written my autobiography ‘The Way I See It’ which is published by Hodder children’s books.

Latest news

I've now written my second book 'Talk to the hand', which will be out in February 2010.

Towards the end of my last lot of chemo, I started to have problems with my ears. I had an agonising pain in my left ear, and started to notice I couldn't hear things as well as before. A hearing test discovered that I had a severe hearing loss in my left ear, and a slight hearing loss in my right ear. An MRI scan a month later found out that I have a small tumour in each ear, and by six months later, I was deaf. I've now learnt the deafblind sign language, which works by touching a different part on my hand in a certain way for each letter of the alphabet, and that's why I've called my new book 'Talk to the hand'!

Nicole's Fund

In the summer of 2008 I set up 'Nicole's fund' with Teenage Cancer Trust as I want to help them build their new unit at The Royal Marsden Hospital in Surrey. I'm aiming to raise as much money as possible towards the unit, and my first goal is to raise £100,000 to fully equip one patient's bedroom.

Make a donation at www.justgiving.com/nicolesfund