About Me
In February 2000, I banged my arm going down a flume at the
swimming pool. I got instant pain down my right arm. After several trips to
doctors and hospitals, I went to see a physiotherapist. She noticed that it was
a problem with my spine, not my arm, after I got pain doing a certain stretch.
I was sent for an MRI scan which showed a large tumour at the
top of my spine. On August 7th 2000, I was diagnosed with a peripheral nerve sheath tumour,
a rare type of cancer. I was 11. I had the tumour removed and
had eight weeks of daily radiotherapy. I travelled two
hours a day for 2 minutes of treatment. It was tiring, and I missed the
first eight weeks of secondary school. The only side affects were a sore
throat, and tiredness from the travelling.
I had regular scans but in April 2002, I started to get pain in
my lower back. I had an angiogram and a lumbar puncture but nothing
was obvious. They then discovered a shadow on one of the scans, so I had
another operation. That showed an AVM, an Arterio Venous Malformation. This is
a cluster of engorged blood vessels. I was stitched back up as it was dangerous
to touch it. It could have been difficult to control the bleeding if it was
cut. I had both my operations at King’s College Hospital in London. My surgeon,
Chris Chandler, is brilliant and I get on really well with him. He looks like
Willy Wonka, the Gene Wilder version.
On 14th December 2002, I collapsed at home. It took a few hours
to realise I’d had a subarachnoid brain haemorrhage. I was in hospital for over three
months. I had a stroke, Bell’s Palsy and several
fits. I had a near fatal reaction to the anti-fit drug. It was called Stevens-Johnson syndrome. I have to
wear a medic alert bracelet now, so I’m never given that drug again. I had a
biopsy and was told I had another tumour. It was under the AVM and the vessels
were feeding off the tumour. It was one of the blood vessels that had burst and
travelled to my brain, causing the haemorrhage. I was told I had tumours all
over my brain and spine. I had nine months of chemotherapy. I had it in tablet
form. Needles are my biggest fear. For three weeks I took six tablets a
night for three nights, and then had a week or two off. The chemotherapy lasted
for over a year. I think I tolerated it quite well. I was sick quite a lot
though, but it could have been worse. I lost my hair. It used to be straight
and then it went curly when it grew back. Lack of oxygen to my brain during the
haemorrhage has left me
completely blind. I had a lot of nerve damage too and I am in a wheelchair now.
I am determined to walk again and won’t give up on that.
In March 2004 I was told that it wasn’t tumours on my brain
after all but infarctions which are tiny splatterings of blood. They happened when I had the haemorrhage.
In September 2006 an MRI scan revealed both my tumours had
started growing back. I had started getting pain in my arm and back again, so I
asked for a scan to be done. On the 12th October I had a Hickman line fitted, and
started chemotherapy that night. I had two different types of chemo. My hair
fell out again within two weeks. The first month was the worst. My mouth was so
painful, and full of sores. I got an infected Hickman line and high
temperature. I had a scan in December, after three rounds of chemo, and that
showed that the tumours had stopped growing.
I developed a blood clot in my right arm after the 3rd round of
chemo. I had finished my treatment for that round, and my arm started hurting.
It was getting worse in the car on the way home from the hospital. When we got
in the house and Mum looked at my arm, it was blue and twice the size of the
other arm. I was in agony, and I could hardly move it. My veins were popping
up. Mum phoned my community nurse, and she said she thought it was a blood
clot. I had to go straight to my local hospital. They gave me a chest x-ray, an
ultrasound and an anti-clotting injection. I was then put on Warfrin, to avoid
further injections because I have a huge phobia of needles, but the Warfrin was
too complicated with all the other tablets that I was on, and I bled too much.
I had to stop taking it, so needed to go back to the injections. I was
devastated when I was told I needed one daily for three months.
I finished my chemo on the 15th February 2007. I had a much
lower dose for the final round because my heart wasn’t strong enough to handle
anything higher. Four days after coming home my leg exploded with pain. I knew
straight away it was another blood clot. I had an ultrasound and it showed a
clot from above my hip to below my knee. It was agony. Everyone was confused
why I had developed another one as I was having injections to prevent further
clots. I had lots of tests, and was put on a higher dose of another
anti-clotting injection. I had to stay in hospital for fifteen days because I
also got an infected Hickman line. I had six rounds of chemo in all. Each
course being every three weeks, and lasting four days. After each course I had
a few good days, and then would get a high temperature, an infected Hickman
line or a virus. I had to stay in hospital on IV antibiotics because I was neutropenic, so had no immune system to fight
the infections. I had four blood transfusions too, but was threatened with
more.
My first scan after finishing chemo was
in June 2007. The result was that my tumours had stayed stable. It was the
results we were hoping for. I had my Hickman line taken out on the 8th March.
It was sooner than I’d hoped, but it was the best decision because it kept
getting infected. I will have echo scans and kidney tests every three months
for the next year or two to check they are repairing, and MRI scans every six
months for several years. I finished having the anti-clotting injections on the
6th August 2007. I had 246 of them in total. My hair has now grown back for the
second time, and it’s curly again.
Towards the end of my chemo I got a
really bad pain in my left ear. I started to notice I couldn’t hear things as
well too. A hearing test six months later revealed a severe hearing loss in my
left ear, and an MRI scan the following month showed a small tumour in each
ear. They are benign tumours, and I had six weeks of daily radiotherapy at the
end of 2007 to try and prevent any more damage. It hasn’t seemed to work though
as I am now profoundly deaf in my left ear, and moderate to profoundly deaf in
my right ear. I can hardly hear anything at all anymore, and I’m now learning
deafblind sign language, so that I can still communicate with people.
The tumours in my ears are a sign of
Neurofibromatosis Type 2, and at the end of November 2007 I had a genetic test
done (blood sample) which took three months for the result, which we got in
March 2008. It was negative which we were shocked about, so at the moment we’re
not quite sure what the tumours are.
I have written a book about the last
seven years of my life, which is called: ‘The Way I See It’. I hope it can help
other people in a similar situation. It is published by Hodder Children’s
Books, and is available now from Waterstone’s, WH Smith, Asda and on-line on
Amazon. I have a talking laptop which I typed it on - it’s a normal laptop, but
has a speech programme called Jaws installed into it. The laptop is sexy
pink!
I keep myself busy by organising fundraising events for my
favourite charities, and for more details about that, please visit the
fundraising page on my website.
In 2006 I set myself the challenge of raising £30,000 for The
Silver Lining Appeal, which is a charity for King’s College Hospital, and in
June 2008 I reached my target after winning ‘Britain’s Most Inspiring
Fundraiser’, which is a new award launched by everyclick.com in memory of Jane
Tomlinson. The prize was £20,000, so along with the £22,000 I’d already raised,
it meant I’d smashed my target!
I’ve now set a new target to raise £50,000 for the Teenage
Cancer Trust. I’ve set up a fund with them called ‘Nicole’s fund’, and I’d like
to have reached my target within the next two years. TCT is a charity devoted
to improving the lives of teenagers and young adults with cancer. Their main
priority is to build specialist units in hospitals for teens and young adults
going through treatment for cancer. TCT are now building one of these units at
The Royal Marsden Hospital in Surrey, where I’ve had my cancer treatment since
I was 11. The money raised with ‘Nicole’s fund’ will be going directly to this
hospital.
To help me reach my target please visit: www.justgiving.com/nicolesfund Thank you
very much.
I love all different kinds of music, but my favourite bands are
Blue, Blazin’ Squad and Friday Hill, Sugababes and I love Lemar and Poulo
Nutini.
I love chips
and chocolate! I love chewy sweets like Haribos too.
I have two dogs, Molly and Daizy. They are a cross between a Jack
Russell and a Cavalier King Charles Spaniel. They are my most prized
possessions. They
are always sitting on my lap. Molly is seven and is quite calm
and doesn’t like noise. Daizy is three years old and is absolutely barking
mad! She is black and white and Molly is
brown and white. We live really close to the beach, so they love to go there. I
miss them a lot when I have to stay in hospital.
I go horse
riding every week with a charity called RDA. It stands for Riding for the
Disabled Association. I have the same horse every week. She’s called Sox and is
15.3 hands high. I love going riding as it gives me freedom from my chair and
I’m in control! Sox is brown with a white diamond on her forehead. Her show
name is Diamond Sox.
My favourite colour is pink and I’m a really girlie girl. I love
Eeyore, Piglet, Bagpuss and anything pink, fluffy, glittery and over the
top! I love all things divaish!!
I like angels and fairies too. I believe I have a guardian
angel.
I don’t let my disabilities get me down. It’s happened and
there’s nothing I can do about it. I just get on with it and enjoy myself. I am
a very positive, determined and stubborn person. I learnt Braille but moved on
to a talking laptop and mobile phone. I text and email my mates. I get magazines
on tape, so someone reads them to me. I get several magazines, including OK,
Heat and Closer. I love my celebrity gossip!
I finished college in June 2007. I did an English GCSE and got a
B. I am hoping to become a columnist, and have a career in writing. I’d like to
be a fashion designer, or maybe a party planner too! I love planning and
designing.
I hope you enjoy my website. Please sign the guest book before
you leave.
Love Nicole xxx
You can email me at nicole@c-h-o-c.org.uk I’d
love to hear from you!
Page updated March 2008
