My Diary – December 2009

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