My Diary – June 2007

Friday 29th June 2007

As soon as I took my tablets on Friday morning I was sick. I couldn’t take any more because we weren’t sure how much of the tablets I had already absorbed. I was sick again an hour later. I thought it was a urine infection, and the results came back that afternoon to confirm it. I started on antibiotics at teatime, and started feeling better quite quickly. I was able to eat then, which I hadn’t been able to do for days.

I felt practically back to normal by Saturday.

On Monday I went to Demelza. Shahira was staying at the same time. That night we watched What Women Want in TIZ and ate junk food. No change there then!

On Tuesday we went to Bluewater. I was really good and only bought one thing! That night we watched a DVD, but I can’t remember what it was. It had something to do with planes, and it was meant to be funny, but I didn’t think it was. I really should pay more attention!

I had a lazy day on Wednesday. I had a back massage in the morning, then Shahira and I watched DVD’s and chatted for the rest of the day. We watched Mean Girls, Hot Fuzz and Miami Vice. I got bored of Miami Vice though so went to bed.

I came home on Thursday. I spent time catching up with emails etc. Mum started having a clear out while I was away, so I had some things to sort through. She found a carrier bag with my latest lot of hair that fell out. She wants to throw it away, but I said it could be worth a fortune on Ebay when I’m a famous author! It’s been put back in the draw for now…

Molly and Daizy were total mingers on Thursday. They ate a centipede! Molly had been playing with it, but then got bored and went back to bed. The centipede went under the coffee table, and then crawled out covered in dust. Shows how often it gets dusted under there! It looked twice the length because the dust was trailing behind it. Molly and Daizy both started sniffing it. Mum told them to leave it then left the room. When she went back in it was gone! She doesn’t know who ate it because Daizy was licking her lips, and Molly then went for a drink. Maybe they went 50/50 and had fifty legs each! I wouldn’t let them near me because I was scared it was going to crawl out!

I’ll leave you with that thought…

Love Nicole xxx

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Friday 22nd June 2007

This week has been one big headache - literally!

On Friday I wasn’t feeling well. I had a headache and was quite stressed about things. Evelyn came over and we worked on my book for a few hours. That night I went to the Try-Angle Awards. I went out without my wig again. I took Pam and Yvonne with me because they nominated me. The ceremony started with fireworks going off which happens every year, but it then set off the fire alarm, and we had to go outside for about half an hour. The night lasted about two hours. There were eleven categories, with three winners in each category. I won a special award. Everyone got an engraved Perspex triangle and a framed certificate.

I still didn’t feel too good on Saturday. I had a bad headache and took paracetamol, which I gagged on and made me feel sick for most of the day. I sorted out all the stuff for my stall for the Funday the next day. It took quite a while to sort out the tombola things and stick the tickets on. I tried not to get stressed about things to help my headache, but the more you try not to do something, the more it happens.

Sunday I was on Tankerton Slopes with my stall for The Silver Lining Appeal. Lee and his friend, Will, set up the stall and gazebo for me, after only an hour’s sleep! So thank you to them. I had a tombola and homemade cards that someone gave to me. The tombola ran out of stuff by 2pm, so we sold cards after that. Two people, both called Rachel, from Silver Lining came to help out. The weather turned out really nice in the end after being told it was going to rain. I managed to raise £190.80, which is more than I was expecting, so I’m really pleased with that. That now brings my total to over £10,000, which was my target for the end of the year. I’ve managed to raise £5,000 in 4 months. I am now The Silver Lining Appeal’s number 2 fundraiser! I was number 1 last week, but I’ve been knocked off the top spot! You can see the total rising on my Justgiving page - www.justgiving.com/nicoleschallenge .

There’s a thermometer on the page which rises with the total. The next event to raise funds is next Saturday (30th) at the Saga Pavilion in Folkestone. There will be an orchestra who will be wearing black and white with a touch of pink! Tickets are £8 or £4 for students. This is the last event for a while. Please email me if you would like details.

Monday morning I was a bit sick, and it was bright green! I had a bit of a headache again. We left at 11am to go to the Marsden for my scan results. I was a little bit nervous about them because of the headaches. I had an echo scan of my heart first, and that has improved a bit since the chemo. Then I got my scan results. I knew they were going to be good because my oncologist tapped my leg as he passed me in the corridor. He said that no new tumours have grown and, if anything, the ones that are there have shrunk a tiny bit. I wasn’t expecting to hear that. I told him about my hearing and he said that, although hearing loss is a side effect of chemo, the type of chemo I had doesn’t cause it. He said that he will check my scan again in that area for any tumours because my type grow on the end of my nerves, but he doesn’t think there are because they would have seen them when they looked before. In the meantime I’ve to try eardrops to see, or should I say hear, if that helps. We discussed the pain in my hand again. I’ve now stopped taking the third painkiller that I’ve tried to help it, and he is going to speak to a pain team for what to do next.

I started to feel really funny on Tuesday night and at 11pm I asked Mum to take my temperature - it was quite high. My chest felt a bit heavy and I had a slight cough, so I thought it could be a chest infection. We left it a while but then decided to call the ‘on call nurse’ for advice. She said that it was ok because I wasn’t on chemo anymore and to treat me with paracetamol just as if I had a temperature. I thought for a minute that I might have to cancel my photoshoot for the next day, but was determined not to! I took paracetamol which seemed to help a bit, but I couldn’t sleep.

Wednesday was great. I felt almost back to normal for my photoshoot. Frances, the make-up artist, who did my make-up for my birthday came at 9.30am. She didn’t use a lot of make-up as I wanted it to look natural. She used eyelash curlers on me which are the scariest things ever, but really do the job. My eyelashes have grown in longer which is great! Good things come out of bad. Margaret my publisher, Poppy the photographer, and David who is designing the front cover came at 10.30am. I’m not going to say too much about the photos but we were outside, and a pink prop was used in a few of them! Oh, and I had to straddle a chair, but I’d rather not talk about that! Poppy took about 300 photos, so hopefully there will be a good one! She was pregnant so I felt her bump. It didn’t do anything though. I think it was asleep. We had lunch after that, and then I did the thing I’ve been wanting to do for over two and a half years… I signed my contract! In pink pen might I add, on the line that said author!

I felt rubbish on Thursday. I took some tablets in the morning as usual, but threw them up not long after- sorry to be graphic. I generally felt weak, headachy and not too good. Evelyn was here and we worked on the book. I mainly lay on the sofa holding my head, and Evelyn read out the parts of the book that need editing. I ate hardly anything. I don’t have an appetite at the moment. I just seem to either gag, or be sick.

Don’t forget to sign the guest book if you are visitor number 20,000. Thanks!

Love Nicole xxx

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Saturday 16th June 2007

On Monday I saw my doctor at the haemophilia clinic. He’s really nice and funny. He said I have to stay on the injections for at least another two months until I see him in August. We can discuss then when to come off them. I was supposed to have a blood test to check the injections were still working, but he very kindly agreed that I could have the test done when I had the cannula in on Wednesday for my scan and kidney test. Afterwards I went to hydro. Then Evelyn came here. I am starting on my book now. There’s quite a bit of work to do, but I’m really excited about it. Different parts of the book are in different colours to show what bits need editing etc. Evelyn and Mum are acting as my eyes to tell me what parts are in what colour.

Tuesday was one of those days where everything went wrong and I was quite stressed. At the end of the day Mum told me about something she had thought of a few days earlier – that I might need two cannulas for my kidney test. I had my Hickman line in when I had my kidney tests done before. The nuclear substance has to go in one vein, and the blood samples taken out of another vein. We weren’t sure if I needed two cannulas though. This worried me for most of the night, but I’m glad Mum pre-warned me.

Wednesday was a crap day and I wasn’t in the best of moods. I had to be ready for 6.30am because we didn’t know what time transport was going to pick us up. They came at 7.15am, and we got to the Marsden just before 9.30am. I had planned weeks before that this would be the day I would go out without my wig, because I’d probably be the one with the most hair at the hospital. It felt quite strange - like something was missing, and also a bit cold. It was great though!

They said I needed two cannulas. I felt myself wanting to cry when the nurse said that, but managed not to – I’ve been working on my breathing! It was about half an hour before a doctor came to do it, so by then I’d worked myself up, and as he started to put the strap round my wrist to make my veins pop up, I started crying. I only cried slightly and I was laughing at the same time, so I looked a bit weird. Once he put one cannula in, I went all funny and I had to lie down. I went white and felt awful. I thought I was going to be sick, so had a bucket prepared. Feeling faint is the worst feeling. I had a really bad stomach ache as well. It was about ten minutes before I felt better.

I didn’t manage to get out of the second cannula though which wasn’t as sore. The good news though is that I had to be weighed, and I’ve lost a kilo! After that we went to the nuclear science department. I had the nuclear liquid stuff (don’t actually know what it is) put in, then they took the cannula out. It seemed like such a waste. After that we got into an argument with the rudest woman ever. I had just come out of the disabled toilet, and a woman went to walk in. Mum said to her, “Oh, you’re going in there are you?” She replied, “Yes I might as well.” Mum pointed out that it was for disabled people, and that she wasn’t disabled, but she held her hand up and said, “I have a bandage.” Like hello, everyone in the hospital has a bloody bandage on! We went to the children’s ward to drop off the pots needed to take my blood over the next four hours, and then went back along the corridor to the café. When we reached the toilet again, we heard the woman saying to her husband, “And then she said to me, can’t you read, can’t you read English.” Now, my Mum isn’t aggressive or argumentative, but that annoyed her. Mum said to the woman that it was she who had spoken to her earlier, and that she hadn’t said that, and the woman just replied, “Oh that was you, was it?” She didn’t even recognise us! She then started arguing, saying that she really needed to go. Then I got involved! I asked her what if I really needed to go, but I had to wait while an able-bodied person used it. Her husband just kept apologising and tried to drag his wife away, because he obviously knew what she was like, but we all just ignored him! Honestly, that woman annoyed me for hours afterwards. It helped pass the time though!

I had the first blood sample taken, and then we went for lunch. The chips are normally quite nice, but they were rubbish this time, which made me even moodier! We then went back to the children’s ward where I went to sleep. It helped my back to lie down for a while. I kept having little panic attacks because I stressed myself out. I just wanted to get home. I had two more blood samples taken, and at 3.30pm we went for my scan. I used to be good at lying still in the scanner, but I can’t anymore. I was Ok for about 20 minutes, and then I felt really hot and really wanted to move. They stopped the scan early, so I was only in there for about 45 minutes. They took the other cannula out but it took a while to stop the bleeding. It had been put in right on the bend of my wrist. The thought of that makes me want to vomit! Linda picked us up at 5ish. We got home at 7pm. We had Chinese but even that didn’t cheer me up! What did, though, was when I got an email from Dan to say to listen that night to www.radiocabin.co.uk.  He has done a mixtape with his friend, and 40% of sales are being donated to The Silver Lining Appeal. The tape is out now and you can buy it from Gatefield Sounds in Herne Bay and Whitstable. Thank you Dan and DJ Pest!

Thursday I spent most of the day sorting out tombola prizes for the Funday tomorrow. In the afternoon I had my eyebrows waxed. They really needed doing. Gilly spent about half an hour waxing and plucking them. Gilly always cheers me up when I see her. She tells me things that I’ve never thought of. Like, I have lovely shaped lips and cheekbones, and the perfect shaped eyelids to put make-up on! She’s a beautician so looks at things in a different way to most people. She also attacked me with a nail file. One of my nails had broken, and she can’t stand nails being different lengths. I hate nail files, but I had no choice. Gilly’s not the sort of woman you say no to! She filed them all to the same length. It was horrible!

Tomorrow Sunday (17th) I will be at Tankerton Slopes with a stall for The Silver Lining Appeal. It’s on between 11am – 5pm. There will be lots of stalls, a band, go karts, a helicopter display and more. Hopefully it won’t rain, but we have a gazebo just in case.

Please sign the guest book. Ta!

Love Nicole xxx

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Friday 8th June 2007

Me and John Reid

My exams are over! Woohoo! I’m so glad, but more on that later.

On Saturday I found out I’ve won a Try-Angle Award. They are awards given in Kent for people aged 11-18. I won two in 2005 for my fundraising and for triumph over adversity. The awards are next week, so I’m really looking forward to it. I was nominated by my physiotherapist, Julie, and Pam and Yvonne who used to teach me at school.

On Monday I went to hydro again. I then went to Tesco to get my sweets for my exam the next day. I spent the rest of the day/night revising. That’s all I’ve seemed to have done for the last fortnight. I got so bored of it. It all became the same after a while.

I got an email late that afternoon from Frances Lawrence, the widow of Philip Lawrence. She invited me to the Home Office on Wednesday to meet the Home Secretary, John Reid, to talk about The Philip Lawrence Awards, which are awards given to young people who have helped in their community.

Tuesday was horrible. I got to college at 9.30am to start the exam. I was in a room of my own with my support teacher Sally, and another support teacher. I needed two teachers so that one didn’t cheat with me. I was allowed 100% extra time and as many breaks as I needed. I took my laptop in to type everything up. I did the first question which was to compare two of the stories I had been revising. I didn’t know, or should I say realise, that I would have the stories in front of me. I had memorised all eight stories practically line by line! At least I knew them well. I didn’t get the two stories I wanted, but I didn’t get the two I didn’t want either. I had a break after that question and a cup of tea and a cookie, and then I got back to work. I did the second question and then had lunch. Finally I did the third question. That was my chance to show off my writing skills, except the question was something like, write an article to persuade people to take up a leisure of your choice. Who the hell wants to write about that?! I really, really wasn’t happy with what I wrote, and as soon as I finished things started popping into my head of what I should have written. The whole exam lasted five hours for me because I got double time, and breaks in between. I then came home and started revising eight poems for Thursday’s exam.

I got up at 5.30am on Wednesday, and believe me when I say I really didn’t want to. We drove to Demelza House where Lynsey picked us up. We left there at 7am, but didn’t arrive at the Home Office in London until 9.55am. We had to be there for 10am! We had to take our passports as ID, and wear tags round our necks. There were two other past winners in the room, Frances, John Reid and two other people, but I’m not sure who they were. John Reid came in and said he only knows two Nicoles - Nicole Kidman, and the famous one… me! He was very funny and really, really nice. He told us a bit about himself, and then asked us questions about ourselves and The Philip Lawrence Awards. He asked if I’ve ever considered going into politics - I’m actually quite interested. I could just see me running the country! The reason for the day was to promote the awards and get the government behind it. We chatted in the room for about twenty minutes, and then went out into the rest of the building to have photos taken. John explained the layout of the building to me because he knew I was blind, which I thought was really nice. I said I would send him a copy of my book because he was interested in it. He’s leaving at the same time as Tony Blair, but will still be in politics, and he told me where to send it after he’s left at the end of the month.

After that Mum, Lynsey and I went for lunch in a nice café in London called Giraffe. They did brilliant chips! We got home at 3pm, so it was quite a long day. I calculated that I had got in and out of two cars ten times. It’s good exercise though!

I thought Thursday’s exam went much better. I got there at 10.30am and started off with a cuppa and cookie. Everyone else in my class didn’t start their exam until 1.30pm, but I was allowed to do it earlier because if I started at the same time I wouldn’t get home until night time. There were only two questions in this exam, and I got the poem I wanted to compare. The rest of my class got the one I didn’t want. We had different ones because I was doing the higher paper, and they were doing the foundation level. I’m so glad now I asked to change. I had a break after the first question, and then did the second one. That question was made for me because I had to give my view on ‘celebrities’! I finished at 4pm. My back was really sore by then and my leg kept jumping because I was spasaming, which happens a lot if I’ve been in my chair too long. I was so glad to finish. I’m a lot less stressed now they’re over.

A couple of weeks ago two of my Auntie Linda’s lambs were stolen. She didn’t find out until the next day when the police phoned. An off duty policeman saw a car driving erratically late at night in Herne Bay. He phoned the police on duty and they found the car with three teenagers, two lambs and a shotgun in it. They took them all back to the cells - including the little lambs. Luckily the lambs had tags in their ears with a code on, so the police were able to phone Defra and find out they belonged to my auntie. They put them back in the middle of the night, so Linda didn’t even know they had been missing! Luckily the lambs are fine, apart from one is limping. I don’t even want to think why. The story made page 22 of the News of the World!

Next Wednesday is my next scan. I’m also having a kidney test, so it’s going to be a long day.

Don’t forget to sign the guest book. I’m near visitor 20,000. If you are that number, please sign the guest book. You can see what number you are at the bottom of the page when you come onto my website. Thanks.

Love Nicole xxx

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Friday 1st June 2007

A pinch and a punch for the first of the month - sorry just had to do that!!

On Sunday 20th May I went to my Uncle Ron’s 80th birthday BBQ. The weather was lovely, so it was good to start getting a tan. About five people came over to me and said they read my column in The Gazette. It’s amazing the number of people who actually read it. It’s the first time I’ve properly been in the sun this year. It was really nice. I have to be careful in the sun because I tend to go blotchy due to the chemo. I still went blotchy last summer even though I’d been off chemo for two and a half years, so I don’t know when I’ll stop. Luckily I tend to tan quite easily, so don’t need to spend too long in the sun. I will of course be wearing plenty of sun tan lotion! Hopefully a tan will make me look a bit healthier. Sally, my support teacher at college, told me last week that I looked glowing and much better because I’m filling out again. I think that was a compliment, but I’m not too sure!

On Monday I went to hydro, or at least tried to. When we got to the hospital car park we spent ages looking for a disabled place - one subject not to get me started on - then went inside to the pool, only to find it was closed. My physiotherapist forgot to tell me because she forgot I had started going again. I wasn’t too happy, and just to annoy me even more, my trousers nearly fell down in the car park! I had my bikini on which is quite slippy, and put a pair of jeans on in the morning which I found out were too big. I thought it didn’t matter because I was only going to be sitting down, and I just put a long t-shirt over them and hoped I didn’t meet anyone I knew. When I stood up to get in the car they started falling down! Thank god for the long t-shirt. At least it made me laugh! I discovered when I got home that they were actually Mum’s jeans, and we have the same pair but different sizes! It could have been so much more embarrassing.

Tuesday was ‘work that thang’ day at the gym again. I did my usual walking in the parallel bars and then seven minutes on the exercise bike. I walked round the gym a bit with a zimmer, and then sat on the bed to do exercises. I did 50 each of sit ups, leg lifts and a couple of other exercises. I was knackered afterwards. I also set my goal for the ‘MOVE’ programme I’m on. I said I wanted to walk by January with Mum on one side and a crutch/stick on the other.

Wednesday morning I went to Slimming World in Herne Bay to collect a cheque for £1,275. I was presented with a giant cheque from Sally who raised the money by holding auctions at her different clubs. Thank you, Sally, and everyone who donated. I’ll put a photo up next week if I have time.

We went for a meal afterwards with Linda and her friends, Simon and Tina, at a Moroccan place. It’s not my kind of thing, so I ate a low calorie chocolate bar that I’d been given at Slimming World! It tasted surprisingly the same as normal chocolate. Well, it was Cadbury’s after all. I then went to college for my last lesson before my exams. I got the result of my coursework - a top A. that’s one above an A, but lower than an A*(98%). It was marked at the higher level as I’m now doing that exam. I’m really pleased with that, and I’m more confident now to do my exams. Actually, I can’t wait to get them out the way.

Wednesday night I won a competition on: www.radiocabin.co.uk  to meet Chris Simmons who plays Mickey Webb on The Bill. He is the cousin of Dan Blackwell who presents the show. Dan’s personal website is: www.danniebee.com Listen to Dan on Radio Cabin on Wednesday 7-9pm, and Sunday 3-5pm.

On Thursday at 8am I was at Tesco’s getting my legs felt as I needed to be measured for a new pair of support tights! The ones I have at the moment to help with the clot are too tight and leave marks for ages afterwards, so I had to be measured for some more.

I then went shopping and bought a ridiculous amount of white clothes. I also bought some in yellow which is quite strange for me, and of course a little bit of pink. We were home by 10am, and it felt so strange having all that done by that time. Normally I’m just waking up.

Last Monday we went to Linda’s. She’s lived in her house for eight years, so that was the excuse for the BBQ. It was raining so the food was cooked on the fire inside - they have a big open fire. It was all properly cooked - I made sure! Simon was there and he’s really funny but far too rude to put in print what he says though.

I went to Demelza on Tuesday for a TIZ day. I got there at 10am, and we went somewhere to make pottery - but I have no idea where. I think it was a kind of barn where there were monks. I was the first to make a pot, and it felt quite nice. My pot/bowl turned out pretty good. My hands felt really soft from the clay. I really wanted to put it on my face as a face pack, but thought it was best not to. It takes about four weeks before they’re ready because they need to dry and then be glazed and put in the kiln. I’ll pick it up when I stay at Demelza next month. After that we went for a meal. We got back to Demelza at 4.30. Sam, the chef, had baked us a huge chocolate cake - he does the best, but we were too stuffed to eat it, so I brought some home.

I went to hydro on Wednesday. There were no trouser falling down incidents this time! I had the pool to myself which is always nice. I came home and did a bit of revision, and then went out for the night. We went to a concert in aid of Demelza which had been organised by Bill Quigley. He read about me in the paper and contacted me to invite me along. I didn’t know any of the songs apart from the last one. It was country and western kind of music. There was only one downside to the night - Mum was singing, dancing and yodelling - none of which she does very well! I got back quite late and was shattered afterwards, but it was a good night.

A photographer came on Thursday to take a photo of me with the giant cheque along with Linda, Simon, Sally and a couple of people from Slimming World. Linda and Simon stayed for lunch afterwards. I was in the ‘Whitstable Pearl’ in The Whitstable Times on Thursday. It was a good article.

When Nikki’s son was asking his friend a few weeks ago if he knew me, he described me as “the blind girl”. I laughed at first because I’ve never been described like that before, but then I thought this was lovely because I thought people always saw me as “the disabled girl”. It just shows that some people can actually see past the chair.

I got the date this week for my hearing test - the same day as my MRI results. Typical! They had another date for June 20th which is my photoshoot for my book, and then the week after when I’m at Demelza. It’s now booked for the middle of July. I can’t wait to see if the problem can be sorted, and neither can Mum. She says it’s like a disco in my room as I have my radio that loud. My radio is on the side of my deaf ear. I know it would make sense to put it the other side, but I can’t be bothered!

I’ve just been revising for the rest of this week. It’s so boring, but I think I’ve worked out a strategy to revise…go shopping! Only joking, but I think the info is going in now, and hopefully I’ll remember it next week. I just can’t wait to get them out the way and concentrate on my book. I have it back from the publisher now to work on some editing bits, but I haven’t been able to yet because I have to revise. It’s really frustrating!

I now know the total from my sponsored walk in April - £1,100. The full total raised so far is £9,327.79. Considering my target for the end of the year was £10,000, I’m really pleased with that. My next event is a stall at the ‘Funday’ on Tankerton slopes on the 17th June. I have a few things for the stall, but if you have any suggestions then please email me at: Nicole@c-h-o-c.org.uk I’ll tell you more about it next week. Also, about another event at the end of the month which is going to be good!

Tuesday and Thursday are my GCSE’s! Wish me luck!

Love Nicole xxx