My Diary – September 2007

The opening of the new Lion Ward at King’s College Hospital

Saturday 29th September 2007

What a week! First off - Friday. I had an MRI scan of my ears, brain and spine. I’ve had to resort to taking valium for my needle phobia because it’s got so bad. I took a valium tablet about two hours before I had the cannula put in. I thought it wasn’t working, and kept saying, “It’s not working” in a really slow dopey voice. I kept yawning, and it really relaxed me. I was still a bit nervous just before it was done, but I didn’t cry, so it definitely worked! I asked the nurse before she did it if she was a professional, which she said she was, but she clearly wasn’t because she put the cannula in the part of my hand where I didn’t have the numbing cream. It hurt, but it was over with before I could moan too much. The valium helped me relax during the scan too, which meant they could take better pictures. I’ll definitely be taking it again for the next one!

It was an early start on Saturday (4.30am) to get to the airport for our holiday to Scotland. I didn’t tell you we were going because I didn’t want to advertise our house to burglars - I’m not stupid you know! Anyway, we arrived in Scotland just after 10am, and my Dad picked us up and took us to our hotel. There was a group of us, Mum, Lee, his friend Will, my auntie and uncle, Linda and Ian, and my cousins Toby and Megan, and their girlfriend and boyfriend, Lucy and. Levi It was for my Grandad’s 90th birthday.

My uncle, Stephen, picked up Linda and co, and took them to their hotel because they were staying about twenty minutes away from us. We got to our hotel before 12pm, and I had a lie down for a while, then we went into Glasgow to shop. We were staying in a hotel right in the centre of Glasgow which was near the shops. At night we popped round to our friend Gloria’s house to say hello, but as we rang the doorbell her cooker blew up, and she was in her nightie - long story - so we didn’t stay long. We were back in our hotel by 9pm, and I fell asleep at 10.30pm because I was so tired from the travelling. I couldn’t believe it - Saturday night on holiday, and I was in bed with a cup of tea before 11pm. How rock and roll!

On Sunday we went to a shop at the Barras that sold charms because I wanted to find a Scottish one to remind me of my trip, and to show my Scottish roots - for those that don’t know, I was born there and moved to Kent when I was eight. I got a thistle. It’s actually an earring, but I’m going to have it made into a charm. We then went to Loch Lomond for my Grandad’s birthday meal. There were more of us for this - all of the people I mentioned earlier, plus my other auntie and uncle, Lesley and Stephen, and my cousins, Stephen, Lisa and Greg. Oh, and Grandad of course! Gloria makes fantastic balloon models, and she made him a cute little old man with walking sticks and glasses. We had a really nice meal, and then went back to Lesley’s for a bit. Stephen’s brother, John, came over with his wife, Flora, and their one year old daughter, Olivia. I think there were too many people there because Olivia wouldn’t go to anyone. We went back to our hotel after that for a little while, and then to Gloria’s house. We spent the rest of the night there with her husband, Jim, and daughters, Alicia and Hazel. Gloria had bought a load of cakes, so it was a good night!

Monday morning we went for breakfast at the Brooklyn café, which do really nice food. We went to Braehead shopping centre after that. Late that afternoon I met my Nana and Grandad who I haven’t seen for four years, and I also met Jim who lives in Canada, and had come over for a holiday. I’d never met him before. He’s my great uncle. There were about 13 of us, but I got confused by how I was related to some of them. It was nice to meet them though.

Then after that we went to Janice and Sean’s house. Mum and Janice have been friends for about 25 years. We stayed there with them, and their daughter, Nicole, while Lee and Will went out with their son, Paul. We didn’t get back to the hotel that night until 1am, so I was shattered.

I met my literary agent, Lindsey, on Tuesday morning. We met in the bar at our hotel, but because it was 11am we could only drink tea. I took the proof copy of my book with me, which I made Mum take on the plane as hand luggage, just in case someone stole it from our suitcase! So I let her see that. She wasn’t allowed to read it though. It’s top secret! It was nice to meet again. We’ve met once before, a year ago, and I didn’t have a publisher then. What a difference a year makes!

Then after that I did something unbelievable… I got public transport. It came as quite a shock because I didn’t know I was going to. It was Grandad’s actual birthday on Tuesday, so we went to his house. We met Linda and co in Glasgow, from where I thought she was going to drive us to Grandad’s (they had borrowed Lesley’s car while we were there), but then she sprung it on us that we were getting the …train! I’d never been on a train before as a wheelchair user. I got a battered sausage on the way to the station because it was lunchtime. Lee and Ian had to lift my chair onto the train, while I just munched on my sausage. We were on it for about ten minutes without it moving, then a guard told us that the front part of the train was leaving, and the part we were in was being cleaned so wasn’t going anywhere. So I was lifted off again, still eating my sausage - it was a big one - and we then got on the right train, so technically I got two trains. It was a bit wobbly and boring, but exciting at the same time! We were on it for about fifteen minutes, and then got off at a car park where Linda had parked, and we got the car to Grandad’s from there. We stayed at his house for a couple of hours and ate cake. We had a special cake made with a walking stick, smelly cheese, bowls and a pint of Guinness made out of icing on the top. These are some of his favourite things.

We went to Lesley’s that night for a Chinese and some of her friends came round, and we went back to our hotel at 9.30pm, which I was pleased about because I was shattered! Now comes Mum’s next hotel story! We had just got into our pyjamas when we heard

noise coming from the next door room and the corridor. Last time we stayed at that hotel there were teenagers next door and Mum had to complain at 2am, after listening to the noise for several hours. This time she said she would complain sooner if it carried on.

Mum was spying out of the spyhole in our door when a girl went past and pointed to the door and said to her friend, “You’ve got a midget next door” and laughed. (Because we were in a disabled room the spyhole was lower down on the door.) This made Mum really angry and she flew out the door – and I mean flew – and she pounded on the door next door and had a go at the girl. I couldn’t hear what was said, but there were raised voices. She then came back in our room to tell me what had happened, and then went to knock on Lee’s door. There was no answer, so she came back. It was only then that she told me what she was wearing – her nightie and a pair of high heels! Seriously, I’m not joking. She had her nightie on, and she had been trying her shoes on to see if she would wear them the next day with her outfit when she heard the girl, and she just forgot because she was so angry. No wonder the girl was looking her up and down in a funny way when she was having a go at her!

Mum then got dressed, thank god, and went downstairs to complain. She met Lee and Will there in the bar, and they came back to the room with her as our bodyguards! A company had booked four separate rooms, but the four people had been drinking and carrying on in the room next door to ours. By the time the receptionist came to the room and let herself in, there was no-one there. We didn’t hear another peep from the room that night!

It didn’t bother me what she said because it was aimed at the door, not me. I was just annoyed that I was stuck in bed and couldn’t get involved in the action!

It was another earlyish start on Wednesday to get to the airport for 8am to come home. I was quite relieved because I was so tired, and I don’t trust Mum with hotels anymore. We arrived in London at about 11.30am. We had to stay on the plane for a while at the end so that they could get the truck thing to get me off. So what did Mum do? She started chatting to the pilot! We had a really nice pilot called Hugh. Naturally Mum showed him my book cover – I’m starting my book tour already – and he took my website address. He sent me an email that night. How nice! He was a Scottish pilot. The thing I liked most about our holiday was how nice the Scots are. They just chat to you even if you don’t know them, and I found they didn’t judge as much. I like the accent too, and I found it really hard not to want to copy it all the time. I waited until I was in our hotel room to do it, I didn’t want people to think I was taking the mick!

I got to have a lie in on Thursday morning. I went to the opening of the new Lion Ward at King’s College Hospital in the evening. There was food and drink, and we got taken round the ward in little groups. There were a few speeches from my ex paediatrician, Dr McCormick, and Spencer, a boy who has also been treated at King’s. My legend of a surgeon, Chris Chandler, was also there. I love seeing him every time I’m at King’s. Penny, I’m going to make you jealous here - I got a kiss on the cheek from CC! And Mum got two!

It was nice to be at the hospital and not actually have anything done to me. We left at about 8.30pm, and got home at 10.30pm. We stopped off for chips on the way back. Our friend, Simon, drove us. He’s a great story teller, but very rude. The only story I can tell you is the one I didn’t want to hear about, the old lady ghost of Bluebell Hill. Scary at the best of times, but scarier at 10pm driving through Bluebell Hill!

I’ve now raised £13,088.17 of my £30,000 target, so I’m getting there slowly. If you would like to help me with my target please visit: www.justgiving.com/nicoleschallenge

Thank you.

Also I have lots of (about 2,500) freepost envelopes for used ink cartridges. If you don’t do anything with your empty cartridges, or know a company who wouldn’t mind recycling them for The Silver Lining Appeal, then please email me. Each cartridge recycled raises £1 for the charity. It costs you no money because the envelopes are freepost.

This week I won a Kent adult educational learner award. I won ‘most inspirational learner’, which my college entered me for. The awards were on Monday while we were in Scotland, so I couldn’t go. They sent me a certificate and a mug in the post. That’s another thing to add to my memory book! Each year Evelyn makes me a memory book full of my newspaper articles and achievements. This year there are going to be two!

Now to my guest book. I’ve been getting lots of dodgy, and I mean dodgy, spam in there recently. My friend Alexander, who helps with my website, has had to block certain words appearing, to try and reduce the spam. He’s had to block, http, so if you are posting a message with a website address, please don’t put, http, before it. Oh, and I’ve been getting quite a few nice messages from people I don’t know, but they’re not leaving their name, so please do. Thanks!

This weekend I should have been in Birmingham again for the Philip Lawrence Awards sifting weekend, to sift through this year’s entries previous winners, but Demelza couldn’t take me and Shahira, so we couldn’t go. I’m gutted! I’m going to be on the final judging panel again this year though, where the entries that are selected from the weekend will be sorted through for the final winners. That’s in a couple of weeks’ time, so I’m looking forward to that.

Keep your fingers crossed please for Monday. I’ll find out my scan results, and told when I start my radiotherapy.

Love Nicole xxx

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Friday 21st September 2007

I was working on my book on Sunday. I have now done the final, final changes to it. I think so anyway. I started not to feel well again with guess what… another urine infection! It’s really starting to pee me off now. Pardon the pun. I had a headache and belly ache, and felt really woozy and funny. Luckily we have spare antibiotics at home, so I started on those. I didn’t want to be ill for my trip to London this week.

Nikki came on Monday night to do my nails. She resigned on Friday, so she’s no longer my P.A. It had nothing to do with me though – I’m quite a good boss! – but she can’t work for me anymore. She has dropped me in it, and I’ve had to find someone quickly to replace her, which for the time being is going to be my cousin, Megan.

On Tuesday I had a great time at the reps’ meeting in London. Mum and I were picked up by a lovely driver called Barry, and driven to our hotel. We had lunch and then were picked up again by Barry, and taken to the sales conference which had about 35 reps and telly sales people (they had posh titles, but I can’t remember them!) in the room. I was quite nervous beforehand, but I relaxed during the interview, and actually really enjoyed myself. My publisher, Margaret, asked me questions about myself and my book, which lasted about half an hour, then we were taken back to the hotel where I had a lie down for 20 minutes and then we met Margaret again, Naomi (editor), David (cover designer) and Andrew, a lovely Australian sales rep (sorry about the Skippy thing – blame my mother). We had a drink in the hotel, then went for dinner. We discussed lots of things, which, of course, included my book. I didn’t quite realise how much goes into selling a book, and it’s so strange hearing them say that they went into Asda to see if they would sell it. I knew that’s what they were going to do, but it suddenly just dawned on me how big it was. Lots of people have been crying when they read it, which I feel really bad about!

After the meal we went back to our hotel room for the night, which is when it got quite interesting. Mum couldn’t work out the telly. It kept saying on the screen that we had a message, and for Mum to type in our room number. She was doing that and also trying to get a normal TV channel. After ages trying to work it out she gave up. She then went to the mini bar to have a look! She was telling me the prices of things, like £2.20 for a KitKat and £2.50 for a can of coke! She kept picking up things to let me feel the size of them. It was £5.50 for a tiny bottle of vodka. It wasn’t until she looked at the telly again that it showed us our mini bar bill, but we hadn’t drunk anything. It then dawned on us that the fridge must have been computerised and that when you pick something up, it adds it to your bill! We panicked then, but decided to sort it out in the morning because it was late. Mum turned the telly off after that because she still couldn’t get it to work. We were trying to get to sleep when all of a sudden the telly came on again with a porn movie! I couldn’t stop laughing and said she had accidentally ordered porn! She couldn’t turn it off again, and was really panicking! I was thinking our bill was going to look great, vodka and porn! It took her a couple of minutes before she could get it to turn off.

When the telly came on again in the morning, the movie was still on! All we wanted was GMTV! We eventually got that. We had breakfast and were picked up at 9.30am, after sorting out the mini bar bill, to go to a studio to film a DVD for the press pack, which gets sent out with my book to the media. I don’t think I was very good at it. I seem to be better doing live things. We filmed for about an hour and a half, so hopefully they can get some decent clips from that. They filmed me leaving in a silver Mercedes! Unfortunately it wasn’t ours, but the driver’s who was taking us home.

They had a guest book at the studio that celebrities sign, and I was allowed to sign it too! We left just after 12.30pm, and got home at 4pm. I had a great time, and I’m looking forward to future trips. Although I might leave Mum behind in future!

I had my MRI scan today, so I’ll tell you all about that, and what I did to prepare for the cannula, next week!

Please sign the guest book before you leave. You know you want to!

Love Nicole xxx

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Sunday 16th September 2007

It was Nanny’s birthday on Saturday so she, Mum and Linda went shopping to Deal. I stayed at home and planned things for Christmas! The next day was Mum’s birthday and we went to Linda’s for a roast dinner.

And now to the latest drama in my life! I had a check-up with my oncologist at the Royal Marsden Hospital on Monday. It’s strange to think that a year ago I didn’t even know I’d relapsed, yet I’ve been in remission again now for seven months. I spoke to him about the acoustic neuromas in my ears and how to treat them. I had been researching the treatments, so I could prepare myself for what he might say. I have to have six weeks of daily radiotherapy hopefully to stop the tumours growing which will start next month. I’m booked for another scan on Friday because the Marsden want to have another look using their scanner and I had the other scan at a different hospital. So much for not needing another cannula until December! I’m preparing myself already! From those results they’ll carefully plan the radiotherapy. I had eight weeks of intense radiotherapy seven years ago, so they have to make sure it doesn’t overlap the same area. Also there are other risks due to my medical history, but there are risks in everything, and the benefits outweigh them. He also talked about something else from the scan, but I’m not even going to mention it or think about it until it’s checked with the next one.

It’s really, really annoying having to have more radiotherapy because it’s going to take up a big chunk of the next couple of months, as I’ll have to travel two hours to and from the Marsden every day except Saturdays and Sundays – I get the weekends off! It can’t be helped, and I want to get it sorted. I was hoping to get a bit of a break from hospitals, but apparently not! I’m glad now that I made the decision not to go back to college. It’s exactly what happened last year. I found out I’d relapsed three days before I was going to start. I always pick my moments when things go wrong! I just have to wait now until after the scan this week to be told the plans.

I cheered up on Tuesday morning when I received a proof copy of my book. It hasn’t got its cover on yet, but the pages are laid out like they will be in the book. The proof copy is for the publisher to see everything in order and decide whether they like the layout. They’re going to make a few changes, but it will soon be going to the printers. It’s so exciting! It’s134 days until it comes out!

I was totally confused on Wednesday. I went to see a specialist at K & C hospital about my ears, and his opinion is to not do radiotherapy, and just scan me again in six months’ time, and if the tumours have grown or caused any damage in that time, then do radiotherapy. This is the specialist I’m supposed to have seen twice before when we’ve gone to the hospital, but he hasn’t been there, so I’ve seen someone else. Radiotherapy could cause more damage so that’s why he wants to wait, but if we leave it and they grow, they could cause more damage and I’ll be in an even worse position. It’s a no win situation really. My gut feeling is to go with my oncologist’s advice. After all he has known me since I was 13. He knows all my previous treatments and the way my body works, or, more to the point, its unpredictability, so I trust his advice more.

I went to Westwood Cross again on Thursday for a little bit, but only to take the boots back that I bought last week. I hadn’t actually tried standing in them with the heel. When I did I went over on my ankle and hurt it. A major diva tantrum followed with a lot of shouting and moaning, so I decided to take them back. I swapped them for some nice flat shoes. I’ve decided that I can’t wear heels after trying on another pair in the shop which only had a tiny heel, and I still managed to hurt my ankle when I stood. Although I don’t have to walk in the heels, I still need to stand from wherever I’m sitting to get into my wheelchair, so I need at least to be able to stand in them. So I’ve decided heels pee me off and I’m going to stick to flatties. How attractive…

I wish I could tell you what I did on Thursday afternoon, but there are some things I really can’t mention. Trust me, there are so many things that have happened to me, and so many people I’ve met who I’d love to write about, but I just can’t!

I had my eyebrows waxed that afternoon ready for next week. I’m going to London to do ‘book stuff’ which I’m really excited about, so I can’t turn up looking like I’ve got a caterpillar on my face!

On Friday a nice photographer from the Guardian newspaper came. He stayed about an hour, and we went to the beach to have the photos done. The bit about me and my GCSE result might be coming out this Tuesday. If not it could be the Tuesday after.

Evelyn came over in the afternoon and we were reading through my book, and then my other friend Sue came round.

I promise my diary will be up next Friday and not Saturday or Sunday like recently!

Please sign the guest book before you go.

Love Nicole xxx

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Friday 7th September 2007

I stayed in with Nikki on Tuesday because I was tired and did some pampering with her. I put on one of those face masks you peel off afterwards which I love. It’s quite gross though! I did some baking too because the girls were coming over on Wednesday.

I went to my GP in the afternoon for a couple of things including for her to look at my toenail, just to check it was ok. What a nice job she has! The nail is growing back, which is quite a relief because my community nurse said they sometimes don’t grow back, so I’m glad it’s starting to. I also spoke to her about my needle phobia. I’m considering hypnotherapy, but she’s suggested trying something else before I have the next cannula put in to see if that helps first. I’m not due to have another cannula until December, but I’m already panicking about it.

Nic, Rach and Char came round on Wednesday. Rach is moving quite far away for uni, so I won’t see as much of her now.

I decided not to go back to college on Wednesday. I looked into the media courses. For one of them I needed four GCSEs, and the other was three full days a week and I couldn’t cope with that. I then found out about English A-Level, but that was two three hour lessons a week, with one of them starting at 9am. I know that’s what normal people have to do, but I’m not normal for a start, plus I don’t sleep well at night and it takes me ages to wake up and I have to do it slowly. I’d have to leave the house at 8am on those mornings, and I just decided no. I wouldn’t have been in the best of moods on those days! There’s always next year…

I went back to Westwood Cross on Thursday. I think it’s my new favourite place. I got some black high heeled boots which I’ve been looking for, for ages. I got some other things too, but still resisted the white hotpants.

And now on to the tour I mentioned last week. My friend DJ Dan is doing a tour of pubs and clubs in Herne Bay with various DJs, MCs and artists. The first one is a Drum & Bass night on the 15th September at The Royal Oak, then a variety of music at The Ship on the 16th. R ‘n’ B and disco music at Talk nightclub on the 19th, the crowds choice of music at the Pier pub on the 22nd and 70s and disco music at The Divers Arms on the 29th. All performances start at 8pm. There are some dates in October too which I’ll tell you about nearer the time. The proceeds are going to The Silver Lining Appeal, so please go along to one of the events, and thank you so much Dan for organising these. You can visit Dan’s website at: www.danniebee.com

It’s Mum’s birthday on Sunday, so Happy Birthday Mum!

Next week I have a check up at the Marsden and will hopefully find out what will be done with my ear.

Love Nicole xxx

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Saturday 1st September 2007

I can’t believe it’s now September! Sorry I didn’t do my diary yesterday. So much to do – so little time…

I saw a new doctor on Friday (24th). I don’t have a paediatrician now that I’m an ‘adult’, so I’m now meeting new doctors for my different conditions. She was an oncologist who I’ll only see if I have any problems with my cancer, but fingers crossed I won’t. I still have my specialist at the Marsden, but this is just a local one in case I need treatment here. I then went for a look round the cancer ward which is where the children’s ward used to be. I’ve stayed there a lot over the last seven years, so it was good that I knew where it was and I could get an image in my head. We went to the chippy on the way home to celebrate my GCSE result – still annoyed about the five marks! Just as I was about to eat I got a call from the Guardian newspaper - you know, as you do. I had to quickly make a decision between a large juicy crunchy battered sausage, or speaking to the national press, so I asked her to ring back! The sausage was lovely and so was the lady from the Guardian, and thank you Janet for donating on my Justgiving page, and sorry for just putting you in the same loveliness as a battered sausage!

I tried using crutches at the gym on Tuesday, but it was really hard. I had been there for an hour already by the time I attempted it, so was quite tired and that made it more difficult. I walked in between the parallel bars, but had one hand on the bar and the other on the crutch. I had to really concentrate on putting my weight on one leg and then stepping forward with the opposite leg, and then had to put my weight on that leg to move forward the opposite arm, and so on. I only managed about five steps because I got too confused and frustrated. At least I know what I’m working towards now, and my legs are definitely getting stronger.

I went shopping with Nikki to Westwood Cross on Wednesday. I came home very happy because I found out I’m a size 10! I wanted to get a new pair of jeans, and got a size 12 to try on because that’s the size I thought I was, but they felt too big. I then got a size 10, and they fitted perfectly! I was really chuffed and just had to get them after that. They’re Morgan jeans which are a good make, so that means a size 10 really is a 10! We spent three hours in Debenhams where I got the jeans – we even stopped for lunch in there. I got some other things too. I almost came away with a pair of white hotpants covered in white sequins. I really wanted to get them but I didn’t think Mum would be too impressed. There were some great white leather knee high boots too that matched them! I have a white feather boa and a pink cowboy hat that I thought they would go great with, but I didn’t get them. I didn’t think I would be allowed out with Nikki again if I had! I might go back next week though… Since then I’ve been eating everything and saying, “I can eat that, I’m a size 10!” If I carry on like that though I won’t be for much longer!

I went shopping in the morning again with Nikki on Thursday, and then we did some wrapping at home. It’s Mum’s birthday on the 9th, so I was wrapping the things I got her on Wednesday. I can’t say anything else because she reads this before I put it on here just to check what I’m writing!

Evelyn and my friend Pam came over on Friday for a catch-up. Eating cake and drinking Tetley is what I do best. After throwing hissy fits that is…

I’ve got a really busy month this month which I’ll tell you about next week. I’ll also tell you about my friends DJ tour for The Silver Lining Appeal!

Love Nicole xxx