My Diary – April 2008

Friday 25th April 2008

No diary again I’m afraid. I don’t actually have any news, and the last couple of days have been busy sorting Lee’s broken jaw! He’s having an operation tomorrow to fix it, so please send your positive thoughts his way. Thanks xxx

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Friday 18th April 2008

It’s a bit of a long diary, so sit back, put your feet up and enjoy…

On Friday (4th) I went to the launch of this year’s Try Angle Awards, which is an award in Kent for 11-18 year olds who have achieved things in various categories such as music, the arts, fundraising, bravery and triumph over adversity. I won two Try Angle awards in 2005, and one last year, plus the ‘Spirit of the Try Angle’ award in February this year. After last year’s ceremony I asked Denise, who organises the awards, if she would like any help with ideas etc., so I am now on the committee!

The launch was held in Canterbury in the Lord Mayor’s parlour, and there were about twenty people there. I was being filmed by the BBC - more on that later. I gave a speech about how I felt about the Try Angle Awards as a past winner, and now a panel member. A lot of the people who sponsor the awards were there, so it was good for them to hear it from a winner’s point of view. The Lord Mayor introduced me, and my speech was about two minutes long. I was actually quite pleased with it, which normally I’m not, so I must be getting better at it. After the launch we came back home where Eve from the BBC and Simon, the cameraman, filmed an interview with me. We went to the beach first and it was a really nice day. Not raining like it usually is when we go there. The only time I actually go to the beach is when I’m being filmed or photographed! God knows what the neighbours must think! We then filmed the interview in the house. The reason for the filming was that I’ve won a ‘Rotary Citizenship Award’, and the BBC were filming all the winners.

On Wednesday I was supposed to be getting my hearing aid fixed, and the other one fitted, but, wait for it… my appointment was cancelled! I actually think I’m jinxed. I wasn’t very happy because I was looking forward to having them to go to Blackpool (more on that later too), and the really annoying thing was that I originally had an appointment for the day before, but that was cancelled too. I can’t believe that, as a priority patient, there was no one in Kent who could see me. We said we were willing to travel to any hospital and the secretary was asked if she could e-mail the consultant at the William Harvey Hospital, so he could decide if he could fit me in his clinic, but she said he was too busy. To be honest, I was more upset than angry. My hearing is getting worse all the time, and I want the hearing aids so that I can enjoy the little bit of hearing I still have while I can, before I spend the rest of my life in total silence and darkness.

And now for some good news! On Thursday I went to Blackpool baby! I was nominated by Tony Mogridge, from Faversham Rotary Club, for a ‘Rotary Citizenship Award’, and won! It was really nice to get away for a few days. I went there a couple of times when I was about six years old, and I have good memories of it. I remember looking at the big rollercoaster at The Pleasure Beach and wanting to go on it, but I was too small! I said to myself that I would go on it one day, so was really excited to be going to Blackpool for the award ceremony. It was a long five hour drive to get there, and we didn’t arrive until 7.30pm. We stopped at KFC on the way. Mum’s classic moment there was to ask me if I wanted the popcorn chicken by signing the word popcorn on my hand, then flapping my arms like a chicken…in the middle of the restaurant! We went out for dinner on Thursday night, and then had a drink in the hotel bar. We were staying at the Hilton Hotel, which was lovely. They have the comfiest beds ever! If I could have nicked them, I would have, but my bag wasn’t big enough, so instead I just settled for the biscuits!

On Friday we went to The Pleasure Beach. It was absolutely freezing, and I don’t normally feel the cold. I had a short interview with Laura from Newsround because the BBC 24 were filming the awards, and then it was time for hot sugary doughnuts and the rides! I did actually do it in that order, which was a stupid idea, but luckily nothing happened! The BBC had already contacted the Pleasure Beach where the ‘Pepsi Max’ is, and after a lot of phone calls, it was decided that I couldn’t go on it. No-one wanted responsibility if something went wrong, and you all know what my luck’s like! I was really disappointed, but it’s better to be safe than sorry I suppose. I did manage to go on two rides though, a train, which actually was a bit rubbish, and the only thing I got out of that was a cool breeze, but then I went on a ride that just shot you up in the air which was more my kind of thing! It was a bit of a violent start, and actually quite hurt my back, but it was fun. It was freezing being up high on a windy day! It was then time to get some candy floss and head back to the hotel for a lie down. We went out for a meal again that night and had another drink in the bar. I was falling asleep though, so was in bed by 11pm. After all the fresh air I was so tired that I didn’t even need to take my sleeping tablet that night!

The award ceremony was on Saturday at lunchtime. We had to be at the hall for 10.15am to prepare. There were five winners, about 3,000 Rotary members from around the world in the audience, and it was filmed live for BBC News 24. It’s been nearly two years since I’ve done live telly, so I was a bit nervous. I was the third winner to go on stage, and Laura from Newsround asked me three questions. I had to keep explaining to everyone we met about my hearing aids and that I was not able to hear anything, so Mum had to sign the questions on my hand. I managed to make the audience laugh a couple of times with my answers, which is always a good thing. I received a lovely glass trophy, a framed certificate and £500 which I will be giving to The Silver Lining Appeal to help me reach my target. After the ceremony we had lunch and photos taken, then it was the long journey home again. We got home at 8pm, and I was absolutely shattered. I had so many emails and guest book messages from people who saw me on the news, so thank you if that was you.

A massive thank you to Tony for all the driving, and looking after us so well over the weekend, and of course for nominating me in the first place!

On Monday I went to a meeting for the Try Angle Awards. We’ve got quite a few meetings booked over the next couple of months. I’m not going to give anything away from the meeting, but we’ve now decided on the colour theme and some of the things to have at the award ceremony, which is in July. It’s going to be a good night, and very over the top if all my ideas are taken on board!

Now for the next drama, which makes you just want to scream! I had a long, pointless day at hospital on Tuesday. We were picked up by transport at 6am (I’m still recovering) as I had three appointments at Guy’s and St Thomas’s Hospital in London. I went with Mum, and Nikki, my guide-communicator, who signs on my hand to tell me what is being said, so Mum can listen to the doctors, and then explain in more detail when we get home. My hearing is that bad now that I need a guide-communicator because meetings etc. are just a nightmare and I don’t have a clue what’s going on. I’ve known Nikki for a few years as she used to work at Demelza, and she already knew the deafblind sign language, so she’s perfect for the job!

We arrived at hospital at 8.30am, which was good as my appointment was at 9am, and which meant we were early for once, or at least we would have been if we had been at the right hospital! It took half an hour until someone realised we were in Guy’s when we should have been in St Thomas’s. It then took two hours to do the 20 minute journey by the time we got transport. We were late for both appointments, so have to rebook them. I was also meant to be wearing my hearing aids, so I could be assessed with them but, yes you’ve guessed it, had to explain the story again how I have not been able to use them since the day I got them. We did manage the appointment to see my consultant about my scoliosis though. His first words were, “Why aren’t I seeing you at my Ashford clinic?” Mum had asked months ago for a local appointment and was told we had to go to London! I had an x-ray, and my curve has progressed from 41 degrees out last January, to 43 degrees now, which is a bit of a relief because I thought it had got worse than that. The doctor said that surgery wouldn’t be a good idea for me, which I was pleased about because the spinal rod operation doesn’t sound very nice. I’m still getting really bad back ache, and I’m taking pain killers a lot now to help it. The doctor said it might not be the scoliosis causing it, but maybe my posture and muscle tone. I’m booked to see him again in nine month’s time. We got home at 4pm, which was earlier than it would have been if I’d been seen for both my other appointments, so at least that was a good thing.

A big thank you this week to Ros J, Mario, David and PA Cooper for donating on my Justgiving page. We drove past King’s College Hospital on Tuesday where I’m doing my abseil, and Mum said it looked pretty high! I’m getting a bit scared now, so please keep sponsoring me. Thank you!

I’m getting my hearing aids on Tuesday, but then again… who knows.

Love Nicole xxx

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Thursday 17th April 2008

I will be doing my diary at some point tomorrow, but I thought I would just give you this link for now so you can see me receiving my ‘rotary citizenship award’. I am the third person on stage, and the clip lasts about half an hour. It’s only on the website until Saturday, but if you download it it’ll last 30 days.

http://www.bbc.co.uk/iplayer/page/item/b009z2g0.shtml

Enjoy! xxx

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Friday 11th April 2008

Sorry, no diary again this week. I’m too busy having fun! If you want to know why, watch BBC News 24 tomorrow (Saturday) at lunchtime.

In the meantime, for some reading material, check out this review of my book!

Also, as most of you know about ‘Post Pals’, because I’ve mentioned it before, well, I’m no longer on the site because I’m too old, and there are a lot more poorly children that need cheering up. I originally found out about Post Pals from a little girl called Samantha Hughes. I was told about her website and she had mentioned it there. Samantha was diagnosed with the childhood cancer neuroblastoma when she was two years old. She finished her treatment last summer, but has relapsed again, and there is nothing more doctors can do for her except give her pain relief. Please, if you have a spare five minutes, visit her page at:

http://www.postpals.co.uk/pals/Samantha+H

and send her a card or letter to cheer her up. The aim of the site is to ‘post a smile on a poorly child’s face’, and Samantha and her brother, Louis, could really do with some smiles being posted their way. Thank you.

Happy birthday to Greg, Sam and Linda for this week, and a special happy birthday to Margaret for today!

I will do my diary again next Friday, but I should have lots of things to tell you, so don’t be too mad at me for not doing it this week!

Love Nicole xxx

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Friday 4th April 2008

I’m feeling better this week, so here is a double dose of diary. Enjoy!

On Saturday (22nd March) I went to my little friend, Ben’s, 5th birthday party. I was asked along to collect donations for The Silver Lining Appeal as guests at the party were asked to donate to that or to The Royal Marsden’s Children’s Brain Tumour fund. Ben has been operated on by the same surgeon as me at King’s College Hospital, where The Silver Lining Appeal is fundraising for equipment. We had a little stall by the hotdogs and drinks, and people donated to one of the charities if they wanted refreshments. We collected £27.45, which I was pleased with, and was the little bit I needed to bring me to the £20,000 mark of my £30,000 target.

I have been feeling funny for a while now, but on Tuesday I felt worse. I didn’t go to the gym and stayed in bed all day. My back was really sore and I just felt weak and tired. I don’t know what the problem was though.

I felt the same on Wednesday, and almost fell asleep in the waiting room at the Kent & Canterbury hospital. Last week we waited an hour for a parking space so this week we arrived an hour early, and yes you‘ve guessed it, we got one right away. The nurses were nice, and got some water and put me in a side room where I could lie down for the hour that we had to wait. I was having a biopsy ultrasound. It sounds worse than it actually was. All they did was put jelly on my skin, and rub a little monitor over it. It only lasted a couple of minutes, and it wasn’t until we were in the car on the way home that Mum explained what I hadn’t been able to hear in the room. When I was lying on the bed to have it done, the consultant asked where the lump on my neck was and Mum said I didn’t have one. After a few more questions it turned out that I shouldn’t actually have been there. My doctor had sent me there by mistake, so it was a total waste of time. Neither Mum nor I were the happiest of bunnies about that.

I went to the RNIB shop in London on Thursday so that I could feel their Braille keyboards. If I lose my hearing completely, then this is the only way I will still be able to use my laptop. We went in a minibus with four other people, and I’ll admit, I was a moody cow all day, but my excuse is that I still felt like crap. I also felt sick, so I was concentrating on not doing that in the shop or minibus! I felt three Braille lines, and every one seemed absolutely impossible. They mainly had six big buttons at the top with a few round the side, then all the Braille letters at the bottom. The Braille was so close together though and there was lots of it, so I found it really difficult. I know I’ve said before, if this is the only way then it has to be done, but I honestly don’t think I can learn how to use it. Oh, and there’s also the small matter that they cost £3,000… and that’s the cheapest! Luckily I’m still managing to hear my laptop with loudspeakers, so I’m not worrying about it too much at the moment.

Rosie, a teacher for the hearing impaired, came on Thursday with a lead that connects to my hearing aid, with the other end plugged into my laptop, radio or TV, to make it louder. It still sounded fuzzy though. Mum put my hearing aid to her ear and she said there was a loud crackle every time she or I spoke. When Rosie checked with a special machine she had, she said there was a fault with my hearing aid. She has never heard that kind of feedback before, so we have now booked another appointment to have them changed as I still can’t use them. One word… typical!

I started to feel better over the weekend which was good, because I had a doctor’s appointment on Monday to take blood to try and find the problem, but I was able to cancel that because, miraculously, I felt much better that morning! I don’t know what was wrong, and I still don’t feel 100%, but a lot better than last week. There’s still the threat of a blood test if I start feeling worse again, but fingers crossed that won’t happen.

I was in the Daily Mirror on Thursday. It was a double page spread in the middle. It was the interview I did with a free-lance journalist a few weeks ago. Hopefully you got my message in time to get a copy.

I’m always glad when the clocks change ’cos it means Mum’s clock in her car is at the right time for 6 months again. One of these days she will look at the manual and work out how to change it!

Thanks this week go to Linda, Lynn, Justin, Francesca and Callum, Hilary and John, and Chris and Sarah, for sponsoring me to do the 100ft abseil in July. I’ve so far had £470 sponsorship which I’m really pleased with. You can still sponsor me by visiting my Justgiving page at the top of my diary. Thank you.

I might be on Newsround, BBC1 at 5pm, one day next week, so keep an eye out for me!

Love Nicole xxx

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1st April 2008

I am feeling much better, and will be doing my diary on Friday, but it's just to let you know that I will be in the Daily Mirror this Thursday. Don't forget your copy!