My Diary
(Music
by the New Traffic Islands)
Monday
1st March 2010
I forgot to mention a huge thing in my
last update - I’ve now been in remission for 3 years!! I have my next MRI scan in 6 weeks time,
so hopefully that will confirm it.
Some of you will remember that a couple
of years ago, my gorgeous dogs, Molly and Daizy, made the shortlist for the
Dogs Trust Honours. They went to a
swanky award ceremony in London and got the recognition they deserve. Dogs Trust have just launched this
year’s honours, so if you know a dog who is worthy of an award, please
nominate them. All details can be
found on the link below:
Just a quick reminder that I am doing a
book signing this Saturday at Waterstone’s in St Margaret’s Street,
Canterbury, between 3 and 4pm. Hope
to see some of you there!
Love Nicole xxx
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Sunday
21st February 2010
Well, last Tuesday (9th) was my 21st
birthday! I had a really nice
day. Friends and family kept
arriving during the day with presents, so it was pretty busy. My Nan had a brilliant cake made for
me. It was a lovely chocolate
sponge in the shape of a handbag, and was covered in pink icing. On the tray around the cake were little
things made out of icing, including a little laptop with my website on it, two
little books with my front covers on them, but best of all was a mini Molly and
Daizy! I refuse to eat the dogs
though, I’ve kept them instead!
At night I went out in Canterbury for cocktails with the girls. Some of the names of the cocktails we
were drinking are far too rude to mention - tasted great though! Needless to say, the next morning I felt
rather rough…
A couple of weeks ago I had a blood test
to check everything’s ok before my operation. I was very good about it - didn’t
even use ‘magic’ numbing cream, valium or anything! I just stuck my arm out and let the
nurse do what she had to. I fainted
afterwards though. I just
can’t help it, I think it’s the relief of it being over, but
it’s really annoying when it happens. The day after the test, we got a call
from my GP to say that the nurse had taken three samples, but they needed a
fourth to check for something else.
Therefore I needed to have another blood test. I wasn’t too happy but said ok.
Then last Thursday, we got another call from my GP to say that my blood test
results had come back and I have an iron deficiency and am anaemic. The next day when King’s College
Hospital, where I’m having the op, heard about this, they called us and
guess what? My operation has been
cancelled! It was supposed to be on
Tuesday this week, but my surgeon needs me in top condition for it, and at the
moment I’m too weak.
I’m not surprised with the results. I haven’t been feeling right for a
long time, always tired, breathless etc, and a few weeks ago while I was at the
Marsden for a TCT meeting, I fainted twice. We had just arrived and I stood up to
get into my wheelchair, and just fainted and went all funny. It then happened again, so I ended up
missing the whole meeting and spent the day on the children’s ward under
observation. Typical me huh? I’m now on iron tablets and trying
to eat healthier. I’ll have
another blood test in a few weeks time to see if things have improved, and if
so then my op will be booked again.
I was really disappointed when it was cancelled because I was looking
forward to having it done, and getting an answer at last, so hopefully I will
get better soon and be able to have it.
I hope if you’ve got my new book
that you’re enjoying reading it - I’ve been getting great feedback
on it so far! This week I’ve
been doing some interviews to promote the book. I had an interview and photo shoot with
The Daily Mail (the article should be out later this week), and I’ve also
been interviewed by BBC Radio Kent which will be aired tomorrow. Also tomorrow, I’m talking to BBC
South East news, so keep watching the channel as it will probably be shown the
same day.
That’s all for now. Will keep you updated on how I am.
Love Nicole xxx
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Thursday
4th February 2010
My new book is officially out now!! You can buy it from Waterstone’s
and online at Amazon. It’s
called ‘Talk to the Hand’ and costs £5.99. I really hope people enjoy reading it!
I will be doing a book signing at
Waterstone’s in St Margaret’s Street, Canterbury, on Saturday 6th
March between 3 and 4pm. Please come down if you’d like me to sign your
copy!
Love Nicole xxx
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Sunday
24th January 2010
Happy New Year!!
Not much news for you - I’ve just
been working mainly. At the moment
I seem to be going to a lot of schools to give talks about TCT. I had to cancel some appointments at the
beginning of the month because of the snow, so I’m glad it’s gone
now and isn’t getting in the way of stuff anymore. Molly and Daizy loved it though!
On Friday I went to King’s College
Hospital to have the pre-op stuff done in preparation for my operation next
month. I had my blood pressure
done, swabs taken etc., and luckily I didn’t have to have blood taken
like I had been expecting. I still
need to have a blood test before the op though, but I can go to my GP for it in
the next couple of weeks.
It’s a bit strange going to King’s again for tests and
treatment. I haven’t done
that for seven years since I left there after my brain haemorrhage. I got used to only going back for
fundraising events and photo shoots - and not forgetting my abseil down the
side of the hospital!
This week I got an advance copy of my
new book ‘Talk to the Hand’!
It’s really exciting - only 10 days until it comes out! I have my copy sitting next to my first
book! I’ve just found out
that ‘The Way I See It’ has made it to the shortlist for a Sense
Express Yourself creative writing award.
Sense is the charity that supports deafblind people, and I write a
column for their magazine. I go to
an award ceremony in March where I’ll find out if I’ve won.
It’s only a couple of weeks away
now until I turn the big 21!! I
can’t believe how old I’m getting!
Love Nicole xxx
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Wednesday
30th December 2009
Sorry for not updating sooner. I’ve been really busy, mainly with
work for TCT, so I don’t have as much time to write my diary any more!
First of all - healthwise. Well I’m doing ok. In November I went to Guy’s
Hospital to see my neurofibromatosis doctor, and I now have a date to have the
tumour in my left ear removed and biopsied, so that
we can finally find out what the tumours are. It will happen on 16th February, and I
can’t wait. The operation
doesn’t sound too nice - it involves taking part of my skull out to get
to the tumour - but it’s been three years now since the problem with my
ears started and I just want to know what’s actually wrong with me. Everyone has a different opinion, but
no-one really knows and the only way to find out once and for all is to do a
biopsy. My left ear is the one with
no hearing at all (my right ear has about 10%, but even that’s a bit
dodgy), so they’re removing the tumour from that ear so that
there’s less chance of causing more damage to the little bit of hearing I
have in my right ear. The tumour is
very small, only about 5mm in size, so they’ve said they’ll have to
‘poke around’ to find it.
Can’t wait!
As for the pain in my back, I think
it’s pretty fair to say that the six injections I had in my spine in
October, to put a slow release painkiller in my back, have done absolutely
nothing. I’m still in a lot
of pain. I’m having
physiotherapy twice a week at home to try to help build up the muscles in my
back, so that it might not hurt as much, but now the rest of my body aches a
lot too because I’m doing so much exercise! I’m not quite sure what’s
going to happen next, but hopefully we can find something which helps the pain
a bit.
Better news: at the end of November, I
was at the House of Lords again for a fundraising event for Teenage Cancer
Trust. I gave a speech, which
everyone said was my best one yet!
I was on the same table as the actor Robert Powell, who knows the
deafblind sign language! I was very
impressed that he was able to ‘talk’ to me himself. The cartoonist Gerald Scarffe was also there with his wife Jane Asher (who makes fab cakes), and she also knows how to sign! It was a great night and raised lots of
money for TCT’s South East Appeal.
On 12th December, I spent the day in
Canterbury collecting money for my fund with Lloyd Scott, and his 30ft
dinosaur! He also brought a smaller
T-Rex dinosaur which children could sit on and have their photos taken. They loved it! It was very cold standing outside for
hours though, and it poured with rain at one point, but we still had a good
time and people were very supportive.
We raised several hundred pounds for Nicole’s Fund, which has gone
towards my £100,000 for TCT.
I went out for a meal with my family on
Christmas Eve, and spent Christmas Day at my Auntie Linda’s house. My other auntie, Lesley, and uncle and
cousins from Scotland are down at the moment, so it was nice having them with
us this year. I still can’t
believe that Christmas has been and gone again. It won’t be long now until
Christmas 2010!
I now have the total raised from my
Chocolate Ball in September - £9,400, with some money still coming in
from DVD sales. I’ve had such
good feedback on the ball, and lots of people asked when the next one is, so
I’m now planning next year’s ball! I’ll keep you posted!
A few weeks ago I emailed the RNIB, who
are putting my first book on tape, to ask if it could also be made into a
Braille version. They replied to
say that it already is! I had no
idea, so I’m really pleased.
It’s already available in a large print version, and will soon be
an audio book, so this now means that whether you’re deaf, blind or
deafblind, everyone can read it! If
you’re interested in a Braille version, they can be ordered from the RNIB’s customer services team on 0303 123 9999.
My second book ‘Talk to the
Hand’ will be out very soon!
Only five weeks to go! You
can still pre-order it from Amazon now, or buy it in shops from 4th February!
Finally - Happy New Year! I hope 2010 is a great year for
you. I have big plans for next
year, so beware!
Love Nicole xxx
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Wednesday
9th December 2009
I have two Christmas fundraising events to
tell you about which you might be interested in supporting. The first one is next Saturday (12th),
when famous fundraiser, Lloyd Scott, comes to Canterbury with his life size
dinosaur! You might have heard
about his walk from Land’s End to John O’Groats
this summer, dragging a 30ft T-Rex behind him - well, now he’s bringing
it to Kent! This is all in aid of
Teenage Cancer Trust. He’ll
be at Longmarket in Canterbury next Saturday, along
with big Rexxie and baby Rex who is 6ft high. They will be there from 9am until 5pm,
and will be having a collection for TCT throughout the day. I’ll be there too for some of it,
so if you’re free then please come down to see us!
The second event is next Saturday (19th)
at the Saga Pavilion in Sandgate. It’s a concert by the Folkestone
and Hythe orchestra, and it’s all in aid of Nicole’s fund. There
will also be a raffle and Christmas carols during the event. It starts at 7.30pm, and tickets are
£8 each, or £4 for students.
To buy tickets please use the contacts below.
Available from: orchestra member Deni Bateson 01227 722614
Brandon’s Music Shop, 55 High St,
Hythe, and
Vine Books, 23 Cheriton
Place, Folkestone.
Thanks - hope to see some of you there!
I don’t have much news, but I will
do an update before Christmas.
Love Nicole xxx
