My Diary – April 2009

Saturday 18th April 2009

Lots of good and exciting news this entry!

On Wednesday 1st April I went to St Nicholas’ School for a concert held for my friend Pam’s retirement. I received a cheque for £108.26 which was the collection for her retirement present, which Pam wanted to go to my fund for Teenage Cancer Trust instead of using it to buy her something. I then went to The Royal Marsden Hospital to get the results of my MRI scan, and I’m pleased to say that I’m still 100% in remission! I asked my oncologist what the chances are now of me relapsing again, and he said he can’t promise me, but he thinks I could now be cured. I wasn’t expecting to hear that, but obviously it’s brilliant news and we’re over the moon. I haven’t told anyone the news until this week, though, because it’s taken a while to sink in. It still hasn’t now really, but I’m very happy about it.

On Friday 3rd I went to Pam’s retirement party where people dressed in pink, and donated to Nicole’s Fund. The hall was decorated with lots of pink balloons and banners, and there was lots of pink food too. It was great! The night raised £255 which I was really pleased with.

On Wednesday 8th I went to Guy’s hospital in London to see my neurofibromatosis doctor. As most of you know, I’ve always been suspected of having neurofibromatosis as I have some of the symptoms, and my cancer is connected with NF1. The tumours in my ears are a sign of NF2, but I’ve had the genetics test for that, and it came back negative. We don’t know what the tumours in my ears are, so I’m going to have the one in my left ear removed to biopsy it, as that’s the only way we’ll find out. We have a few more meetings, though, before I have the op. I can’t wait to have it done because hopefully then we’ll finally get some answers.

On Wednesday 15th Nicole’s Fund was officially launched at No. 11 Downing Street! I know I’ve been raising money for a little while for my fund, but I’ve now ‘officially launched’ it, and it’s so exciting! I had a photo call outside no. 10 Downing Street when we arrived at 1pm, then I had an interview with BBC news, who also filmed the party. I then had time to relax a bit while the guests arrived, then I entered the room with Maggie Darling, the chancellor’s wife, who hosted the event. I had invited over 100 special guests, mainly people who have been big supporters of my fundraising in the past. There were speeches from Professor Tim Eden who is funded by Teenage Cancer Trust and is the only professor of teenage and young adult cancer in the UK (and maybe even the world), and Mark Wood, who has won several medals in the Paralympics and is a trustee of Teenage Cancer Trust. He brought one of his gold medals which he won in Sydney just for me to feel it. It was very nice! And I felt honoured to be allowed to hold it. I also made a speech which was over 20 minutes long. It’s the longest speech I’ve ever done, but luckily it went well. I announced that I’ve doubled my original target, and I’m now trying to raise £100,000, which is how much it costs to fully equip one patient’s bedroom on a TCT unit. This includes:

• Patient controlled bed

• Special mood lighting panels in the ceiling

• Sofa bed or parent’s bed

• Plasma TV screen

• Laptop with internet access

• En-suite bathroom - wet room with shower and modern fittings including funky wallpaper

• Wall art or groovy wallpaper

• Music systems

• Game stations - eg Wii or Playstation

• Sometimes there is space for chillout area or comfortable reclining chair

After my speech I cut the brilliant big cake that had been specially made and donated for the event. It had white icing with lots of raspberries on it, and ‘Nicole’s Fund’ written in chocolate. I’ll put a photo of it on my Justgiving page when I get it sent to me, so keep checking my page. The launch party was a great success, with lots of people on board now to support my fund which is brilliant. I also received a special message from Princess Beatrice who was unable to attend the launch, and Prince Harry has sent me a lovely message of support to go in the brochure for the appeal. I’m now planning lots of events to help me reach my target, so I’ll keep you posted on those…

Thank you to everyone who was involved in organising the launch party, and to everyone who came along.

The launch party will be shown throughout the day tomorrow (Sunday 19th) on the BBC News channel, so keep an eye out for it, or the link to it is: Nicole's Fund Launch Party

Love Nicole xxx