My Diary – December 2007

Saturday 29th December 2007

If you want a nice happy Christmas diary don’t bother reading. I’m in the mood to kill and not afraid to say it!

On Saturday Mum and I finally got round to wrapping all our Christmas presents. It took from 9.30am to 9.30pm, and we still had a few more to wrap the next day. We took a break in the afternoon when we went to Swalecliffe Pharmacy for me to draw the winning tickets for the raffle they‘ve been doing in aid of Demelza. The pharmacy delivers my medicines to the house, and one day they attached a letter inviting me to go to the pharmacy to draw the raffle. The people who run the shop had dressed up as clowns because that’s the Demelza logo, and the papers came to take photos. I drew the tickets and I was given some lovely flowers, chocolates and Mum was given a bottle of wine, so it was a nice surprise. I don’t know how much was raised, but I think it was about £2000, so it was quite a lot.

We were picked up at 6.30am on Monday by hospital transport. That’s 6.30am on Christmas Eve! My appointment wasn’t until 11.20am, but we had to pick two other people up on the way. A nice old man at 7am, and a miserable old man at 8am, who moaned he was two hours early for his appointment. Mum soon put him straight that he had had a lie in as we had been up since 6.30am! The roads were totally empty, so we arrived at the Marsden at 8.30am and the place was so quiet. There was hardly anyone around. We decided to go to the radiotherapy unit just to let them know we were there. We were two hours early, but the lovely people squeezed me in, so I finished my treatment by 9.50am. The nice old man who we shared the car with was coming back in the same car as us, but his appointment was 12pm. We thought we would have to wait for him but luckily he had been seen early too, so by 10.20am we were in the car coming home! We got home at 12pm which I was pleased about because I could have a relaxing Christmas Eve, even if I still didn’t feel that festive.

I was allowed Christmas Day and Boxing Day off treatment. Christmas Day just didn’t seem like Christmas. It felt just like a normal Tuesday but with presents and a roast dinner! We went to Linda and Ian’s house and had a nice day. I got some lovely presents including some new charms for my charm bracelet. I got a cute little teapot charm with a flip up lid because of my addiction to tea, a gorgeous Pluto the dog charm with a clear Swarovski crystal face, and pink Swarovski crystals for its tongue. It’s amazing! And a special charm from Evelyn. It’s a handmade solid silver book which has pages and ND engraved on it.

I ate too many roast potatoes as usual, but they were lovely, so I don’t care! We got home from Linda’s at 7pm, so just in time to watch the Christmas soaps in my new PJ’s while eating truffles and drinking tea.

On Boxing Day we went to my Auntie Jean and Uncle Ron’s house. We go there every year, and there are over 20 of us. I found it hard to hear most of what was going on because it was so noisy. I got more presents, including a charm of a horse and Mum’s cousin, Julie, has paid for a dog to be looked after for three months in my name at a dogs’ home. I love things like that and it’s actually part of my New Year’s Resolution to start my family of adopted animals. More on that next week…

But the thing to put me in my mood, is that I found out five days before Christmas that one of the shops in Canterbury had been selling my book. I was shocked because, as you know, it wasn’t meant to be out until the 10th January. It annoyed me because I had told everyone it was the 10th, and I wanted everyone to be able to get it on the same day so that it was fair. I just get stressed when things don’t go to plan, and it’s the main thing that spoilt my Christmas. I know that sounds a bit dramatic, but it’s true.

Also, the invites for my book launch were sent out a couple of weeks ago. I invited who I wanted, but people now want to bring extra people, and are telling me who I should have invited. It’s driving me absolutely nuts and I’ve actually been in tears about it. I have no control over a lot of things that happen to me and this book is the only thing that I’ve been able to organise exactly how I wanted it. The launch party is to celebrate that, and also a thank you to the people who have supported me and been there for me over the years, and who have kept in contact and not lost touch like most people have. I now don’t know everyone who is going to turn up. I know that Hodder is working hard though to make it a special night, so I'm still looking forward to it. I just need to get my outfit now!

The only thing that’s made my Christmas happy is that I’m finally, after nearly two years, number 1 on The Silver Lining Appeal’s top fundraisers list! I’ve been floating between the number 2 and 3 positions for a year, but I’m finally number 1! I just hope I can stay there now. If you visit www.justgiving.com/nicoleschallenge and click on King’s College Hospital at the top of the page, you can see me at number 1!

Anyway sorry for being miserable this week, but that’s just the way it goes sometimes. Roll on 2008…

Love Nicole xxx

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Friday 21st December 2007

Jingle bells, jingle bells, jingle all the way...

Four more days to go now until it’s Christmas Day, yeah!

I got my new wheelchair on Friday. It’s much comfier than my old one, and a smoother ride. It’s black and Mum has covered it in my pink material again. It has self propelling wheels which will help build up my muscles! Only problem is that it fits me exactly, so I can’t put my handbag down by my side any more, or put on any weight, or I won’t fit!

My P.A. was round on Saturday afternoon helping me wrap some of my Christmas presents. I went to the Spice Girls’ concert in the O2 arena that night. It was really good, but really loud. We got a taxi there and met the people who gave me the tickets, Jonathan and Stuart, and their two friends for a couple of drinks before the concert. We were in a Thai restaurant which isn’t my kind of thing, so I just drank my bottles of blueberry WKD’s – I felt like a right chav! They didn’t have any Archers and fresh orange. We then went to another floor, where our seats were, to watch the concert.

As strange as it sounds, I couldn’t actually hear the Spice Girls singing. I felt the vibration – which there was a lot of – and heard the bass and the music, but not them actually singing. I just tried to work the songs out from the bass. They didn’t have a support act which was a bit of a shame. They came on at 8.30pm, and it finished just before 10.30pm. The taxi picked us up again and we got home just before midnight which was earlier than I expected. I had a really good night and thank you so much Jonathan and Stuart for the tickets. Look forward to seeing you next month Jon at you know where!

Sunday I finished writing the rest of my Christmas cards. I also watched the final X Factor which I missed on Saturday. I’m really pleased Leon won!

It was back to business on Monday with my treatment. My sore throat is better this week, but I have a really sore ulcer - so bad that I’m having to use Bonjela, and I never use that. It stings like mad, so I don’t know why I’m actually using it. I’ve never had an ulcer this bad before.

I had a much later appointment for my treatment on Wednesday – 4pm – so it meant a lovely long lie in with lots of cups of tea! It was strange going at a later time and I’ve decided I like my morning appointments better because I’m home in the afternoon.

I had clinic before my radiotherapy and the doctor I saw basically said the opposite to the doctor I saw in clinic the week before. He said the tiredness was just the travelling and not the treatment, and that I won’t get any other side effects, so the ulcers and sore throat are just coincidence.

To end with I thought I’d put a story that I’ve received a few times over the years at Christmas time. It always makes me smile, and if only it were true!

One Christmas, a long time ago... 

When four of Santa's elves got sick, and the trainee elves did not produce the toys as fast as the regular ones, Santa was beginning to feel the pressure of being behind schedule. Then Mrs. Claus told Santa that her Mum was coming to visit.  This stressed Santa even more. When he went to harness the reindeer, he found that three of them were about to give birth and two had jumped the fence and were out, heaven knows where. More stress. Then, when he began to load the sleigh, one of the boards cracked and the toy bag fell to the ground and scattered the toys. So, frustrated, Santa went into the house for a cup of apple cider and a shot of rum. When he went to the cupboard, he discovered that the elves had hidden the liquor, and there was nothing to drink. In his frustration, he accidentally dropped the cider pot, and it broke into hundreds of little pieces all over the kitchen floor. He went to get the broom and found that mice had eaten the straw end of the broom. Just then the doorbell rang, and irritable Santa trudged to the door. He opened the door, and there was a little angel with a great big Christmas tree. The angel said, very cheerfully, "Merry Christmas, Santa. Isn't it a lovely day? I have a beautiful tree for you. Where would you like me to stick it?" 

And so began the tradition of the little angel on top of the Christmas tree…

Think of me and Mum on Christmas Eve when we will be travelling up to hospital at 7am for my treatment while you are all comfy in bed!

I hope you all have a great Christmas on Tuesday. I’m looking forward to having two days off treatment. I just hope my ulcer is gone so I can eat loads of roast potatoes! Also, that there are no tarantulas in the Turkey! I’ll explain next week…

Love Nicole xxx

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Friday 14th December 2007

Rudolph the red nose reindeer had a very shiny nose. Rudolph the red nose reindeer liked to dress in Santa’s clothes!

Do you like the new look website? A big thank you to Alex for doing it!

On Saturday I started to wrap some Christmas presents. I was an ‘elf’ to two of the ‘pals’ on Post Pals this year, so I parcelled up their boxes. For people who don’t know what I’m talking about, an ‘elf’ is someone who sends a box of presents to one of the poorly children on Post Pals. I managed to recruit 21 elves, not including me, so thank you if you agreed to do it.

Monday’s treatment went quickly. I had finished by 11.50am, but we had to wait until 2.40pm for transport, so I wasn’t the happiest of bunnies. Don’t they realise that we authors are busy people?!

We got home after 4pm when I finally got my fix of Tetley. I started to get a really sore throat on Monday. I normally have a sore throat anyway, but it was a lot worse than usual, so I put it down to being a side effect of the radiotherapy.

I went to hospital on Tuesday with Linda and Megan so Mum could have the day off. All right for some eh? I was seen quickly again for my radiotherapy and I told them about my sore throat. They said to go to the children’s ward and speak to a doctor. We went there but I wish I hadn’t bothered. After an hour of waiting and having to listen to a little girl crying having a blood test done (of all the times I wanted my deafness to kick in, and of all the times it didn’t) I finally saw a doctor. She looked at my throat and said take codeine, so I wish I had just waited until clinic the next day to ask. We still managed to get home before 3pm though, so it wasn’t too bad.

I had clinic after my radiotherapy on Wednesday. It only took about five minutes and the doctor just asked if I had any problems with the treatment. I’ve been getting a few headaches this week which is a side effect, but she didn’t think my sore throat was. It could just be, because the treatment makes me a bit run down, that I’ve picked up a bug. To be honest I do go to a lot of hospitals and places where there are lots of people with the lurgy, so it’s not surprising!

I told the doctor that I normally have a sore throat in the morning, and asked if that could be a side effect of the radiotherapy I had seven years ago which was at the back of my neck, and she said it was very likely. The radiotherapy could have dried my throat and I might have scar tissue there, so that explains it. I’d always thought that was the cause anyway.

Thursday was a fun day at hospital. After my radiotherapy I went to the children’s ward where I was meeting someone called Sarah, who I’ve been chatting to on Bebo. She also goes to the Marsden, so we decided to meet. She was having some tests done so Mum and I waited, and that’s when the ‘play specialist’ on the ward asked if I’d like to meet Fearne Cotton. I really like Fearne as a presenter, so I said yes. She asked me about what I was doing for Christmas, and said that she was looking forward to having time off because she likes reading books, which led me perfectly into giving her a copy of mine!. I’m now carrying several signed copies around with me because I never know who I’ll meet! Fearne is also the patron of Post Pals. It’s a small world, ay?!

Mum did take a photo of Fearne and me, but as usual it’s blurry which is a shame. I think she needs a new camera. Either that or I need to take a personal photographer around with me now! Fearne was at the hospital meeting a boy who had won a competition. After I had finished speaking to her, a lady, who was the boy’s grandmother, came over to me and said that she reads my column in the Gazette. She recognised me now that my photo has changed and I’m not wearing a pink wig!

Then finally I got to meet Sarah. I couldn’t chat long with her because Evelyn and David had driven us to hospital and were waiting in the car, and we said we wouldn’t be long and that I would just meet Sarah, but as usual things happened and it had been about an hour! I hadn’t expected my day to turn out like that!

Another favour please! The Teenage Cancer Trust has made The Daily Mail’s top ten finalists to win £100,000, and they need people to vote for them to help them win. If you have a minute, please email teenage@dmail.entries.co.uk and vote for them. The competition closes at midnight on Sunday 16th December. Thank you.

Good luck to Mum’s sister, Lesley, with her teacher training exam on Monday! Rather you than me!

There are a few anniversaries this weekend! Today (14th) is five years since I had my brain haemorrhage. I can’t believe it’s been that long!! And tomorrow (15th) is my website’s 2nd birthday! I’ve had over 25,000 visitors. Not bad, huh?! Please sign the guest book to celebrate! I’ll be celebrating at The Spice Girls’ concert. Girl power!!

Love Nicole xxx

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Saturday 8th December 2007

Deck the halls with boughs of holly, tra la la la la lalalaaaaaaaaaaa! Come on people, get into the festive spirit!

Sorry my diary didn’t appear until Monday. I had a problem with my website details over the weekend but they’ve now been sorted out, so things should run smoothly from now on.

It was a veeeeeerrrrryyy early start on Tuesday. I had to get up at stupid o’clock - otherwise known as 5.30am - to be at Demelza for 7am to go to The Philip Lawrence Awards. We picked my friend, Shahira, up on the way and we arrived on time this year! Normally we get stuck in the London morning traffic. The ceremony lasted about an hour and Sir Trevor McDonald hosted it again. There were nine winners. The projects ranged from anti-bullying campaigns, a project to teach young people about war veterans, to a project to help clean up a local community. Afterwards we chatted to people and ate and drank for an hour, and then I was picked up by hospital transport and taken to the Marsden for my radiotherapy. I was seen straight away, but we had to wait an hour and a half for transport to bring us home, so we didn’t get back until 7pm. I was absolutely shattered. I would have fallen asleep in the car if I hadn’t felt so crap with backache and a headache. I felt better when I got into the house, though, and had a parcel from my publisher with one very nice, very chunky, very pink book inside! It’s my actual book and I’m over the moon with it. It was a really nice surprise because I wasn’t expecting to get it until the next day. I kept hold of it all night and just kept sniffing it! I celebrated in my usual way with a battered sausage and chips!

I was up at 6.30am on Wednesday, which was horrible because I was still recovering from the day before. I had an earlier appointment for my radiotherapy because I had a Christmas party to go to at 1pm. I was supposed to go to clinic after my radiotherapy to discuss the treatment, which I have to do every Wednesday, but I was late being seen, so I didn’t go otherwise I would have been really late for the party. The party was held by Hodder for their authors and illustrators, which of course I am now one of! We only arrived an hour late. We were at The Century Club in Soho, on the rooftop which luckily had a roof over it because it was tipping it down! We were in a room of about 50 people, but I was finding it really hard to hear. I think I agreed to some things I really shouldn’t have! I just always answer yes to things!

After a while Mum and I went to a quieter room on another floor, and people came to talk to me there. I spoke to a couple of other authors, one of which I’ve just listened to her book on CD called, How to Train Your Dragon, which was read by David Tennant, and was quite funny. It was nice chatting to other authors, and I also got given two stamps to sign my books with. I won’t be able to personally sign my own books, so I signed a piece of paper and good old Skippy from Hodder had it made into a stamp!

It all seems to be going well, doesn’t it? Well…

We’d booked a taxi to bring us home at 4.30pm. At 4.15pm we decided to start leaving and went to get the lift. Guess what? It was broken! We had used the lift to get to the floor we were on, but it had broken by the time we went to use it again! Typical or what! The Century Club is connected to a hotel, so they had to ask them if I could go through the fire exit and use their lift to get outside! Thankfully they let us!

We finally got home at 7.15pm, so another long day. I was straight in my PJ’s, and getting my fix of Tetley because I hadn’t had a cup of tea all day. I really am turning into an old lady! I love my tea though!

I can’t wait for my book to come out now. It really is a very sexy looking book! Hodder have had 5,000 more copies printed because they don’t want to run out. That now makes 20,000 copies. Oh I love being in demand!

I was so shattered on Thursday that I didn’t even wear make-up…in public! I know it’s awful but I really didn’t care. I just wanted to sleep. The treatment and the travelling are really tiring now. I just can’t wait to get home each day and relax with a cuppa!

On Friday Mum’s cousin, Julie, took us to hospital. I had my treatment and then saw a doctor because I’ve been getting pain in my ears, like the pain I had before when doctors had said nothing was wrong, and now I have two tumours and am deaf in one ear, so you can understand why I was a bit worried. Also, in the last week Mum and I have noticed my hearing in my good ear getting worse. She’s had to shout more, and I can’t even joke about it anymore because it’s really starting to bug me.

The doctor explained that the radiotherapy causes the tumour and ear to become inflamed, so that’s why, and it will probably get even worse. Hopefully though, when the treatment finishes the swelling will go down, and my hearing will get better. The tiredness is a side effect of the treatment; also the four hours of travelling a day and early mornings don’t help. I just can’t wait for the weekends these days and for the treatment to be over.

Thank you so much to Janice Casey and Jonathan for donating on my Justgiving page this week, and getting me out of the number 13! I can’t believe how generous some people can be. My total is looking quite impressive now, and when I add the total from Ralph’s concert last week, it’ll look even better!

Here is the link again to Amazon for my book. Please keep ordering!

http://www.amazon.co.uk/Way-I-See-Nicole-Dryburgh/dp/0340956925/

Thank you.

Love Nicole xxx

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Saturday 1st December 2007

Jingle bells, jingle bells, jingle all the way… It’s officially now Christmas!

I got a nice surprise when I was having my radiotherapy last Friday when they asked if I’d like two tickets to see The Spice Girls at the O2 Arena in a fortnight’s time. Someone had donated them to the radiotherapy unit, and asked if they knew any young people who would like to go. To be honest they didn’t have much of a choice because even Mum was the youngest in the waiting room. I hadn’t been feeling too well in the morning, and was in a foul, and I mean foul, mood about something, so it helped cheer me up. I was a big fan of The Spice Girls ‘in the day’, so I’m really looking forward to it.

I’m not sure if it was the treatment, the travelling or the fact that I was awake at 7am, but I nearly fell asleep on the way home. My head kept dropping off - well not literally - and I sat with my eyes closed for most of the way.

When we got back a photographer from the Gazette came to take a new photo of me for my column. At the top of the column in the paper it has a photo of me in one of my pink wigs and with my brace on my teeth because it was taken at the start of my treatment last year. I asked for it to be updated, but I wasn’t feeling my most attractive when the photo was taken on Friday. I just wanted to sleep! Still it’s an improvement on what it was. My column now has the new photo, a pink diary and a pink pen.

I went to my friends, Ralph and Matthew Lombart’s, easy listening concert on Saturday night in aid of The Silver Lining Appeal. It was from 4-6pm, and there were a range of acts from singers, a pianist, violinist and more. They sold tea and cakes in the interval and asked for donations. I was presented with a giant cheque at the end of the night for £1500, which I was totally shocked about. I wasn’t expecting that much, and it means that I’ve now raised half my target. Not all the money was raised on the night. Ralph had got a lot of donations beforehand. I don’t know the exact total that was raised yet, so I’ll let you know next week.

I was on stage at the point where I was told the total, and was about to do a speech to thank everyone, but I was so shocked by the amount raised that I forgot the speech I’d had planned and just rambled a few ‘thank you’s. I think I sounded ok though.

It was back to the Marsden on Monday for session four. We were seen almost as soon as we got there, and it only took ten minutes because I didn’t need a scan beforehand like last week. They scanned me for the first three days to check I was in the right position. I’ll have a scan once a week now just to make sure everything is still correct. We got home at 1.30pm, so I managed to relax for the rest of the afternoon.

I had a day off from radiotherapy on Wednesday, but not a day off hospitals. I went to Guy’s Hospital in London to see Ros Ferner, a Neurofibromatosis specialist. I saw her seven years ago when they discovered the tumour on my spine was that type of tumour connected to neurofibromatosis type 1 (NF1), and I also had signs of NF1 such as scoliosis and a few Café au Lait coloured birthmarks. I was never diagnosed though as I didn’t have all the symptoms. I have a mosaic form of the condition. The acoustic neuromas in my ears, which I’m having the radiotherapy for at the moment, are a sign of Neurofibromatosis type 2 (NF2), which is much rarer. NF1 occurs in every 3,000 people, whereas NF2 occurs in every 25,000. The confusion is that the acoustic neuromas are a definite sign of NF2, but my type of cancer definitely only happens to people with NF1. You can’t have NF1 and 2! Confusing, isn’t it?! I’ve asked to start NF3, so we’ll wait and see what happens…

Anyway back to Wednesday. We got picked up by hospital transport at 8.30am, and arrived at Guy’s at 10am. We were a bit early, so we asked the receptionist if she knew if I’d needed a blood test because I did last time I saw her, and someone else I know, who is being tested for NF2 at the moment, needed one. She asked Ros Ferner and she said no, so I then relaxed and didn’t have to put the cream on. (You just know what’s coming up later don’t you!!) I was due to see Ros Ferner at 11.30am, but we didn’t get seen until 12pm. She remembered me, but I don’t think she quite knew what she was getting into when she asked me to just quickly run through my medical history to remind her. Half an hour later she asked, “How bad is your needle phobia?” and I said, “You want to do the blood test now, don’t you.” She sure did! Deep down I knew she was going to do it anyway, so I had prepared myself. I put the numbing cream on my hand, but didn’t take the valium tablet this time. I was feeling quite calm about it, so I think the counselling is definitely working. They will do a genes test on the blood sample. She then wanted to examine me to see if I still have the Café au Lait marks from seven years ago, as they can change. That was the point where I regretted not having shaved my legs!

I spent over an hour with her and the conclusion was that there wasn’t one. I’m still a question mark. She is going to speak to neurofibromatosis specialists from around the world, look at my scan pictures, go over my medical history and wait for the result of the genes test which takes three months. I’m going to see her again in March, so maybe then I’ll finally be diagnosed.

Once I’d finished seeing Ros, we had to wait for the nurse to come back from her lunch break to do the blood test. I’d seen this nurse earlier when she did my blood pressure, and Ros had said she was good. When I saw her again she mentioned something about the veins in my arms, and why the cream was on my hand. We explained that I don’t have good veins in my arm, and it’s always done in my left hand. I instantly had a bad feeling about letting her do it, but thought I would give her the benefit of the doubt. Plus Ros had recommended her and I didn’t want to make a scene, and was just trying to stay calm. I was doing fine at this point and just focusing on my breathing. She put the band round my wrist and wiped my hand. She was pushing on my vein, and then she put the needle in. I breathed a sigh of relief because that was it over for me, but the second it was in I felt her wipe the top of my hand which meant she’d taken it out. I still stayed calm and then she put the needle back in, but she took it straight out again. I couldn’t handle it after that and cried. If it had gone smoothly the first time, or even the second time, I would have been absolutely fine, but it didn’t.

The nurse came back with another nurse and said, “So and so is going to do it because she’s more experienced than me.” I was thinking, “You don’t say!” The new person did it correctly. It took about a minute to get all the blood they needed for the test. Mum described my vein afterwards like a traffic light with three dots in a row, and they’re all on red! My hand is bruised and sore too. It’s now going through the various colours of purple to yellow. I now don’t trust the next person who’ll do it. It just proves you should always trust your instincts.

I couldn’t wait to get out of there and wait for transport. We got home at 5.30pm, so it was another long day.

Thursday it was an early start again to be picked up by transport to go to the Marsden, and we didn’t get home until 5pm. I was supposed to have got my eyebrows waxed the day before, but didn’t get home in time, so the minute we got back I was in the car again going to my friend Gilly’s house to get them waxed. We got home at 7pm, so I was absolutely shattered.

On Friday (yesterday) I went for my treatment with Linda and Megan so Mum could have the day off. My appointment wasn’t until 12 o’clock, instead of the usual 11.20am, so I got a bit of a lie in. The treatment is really tiring now, and I’ve been really looking forward to the weekend. I can’t believe it’s now December!

On other news. I signed a petition last week to stop the slaughtering of dolphins in Japan. They kill them in a horrible way for food so that they can make money. I’ve swam with dolphins, and they’re lovely animals. I don’t know how people can harm them, let alone eat them. Please sign the petition by clicking on the link below. It takes less than a minute.

http://www.ipetitions.com/petition/savethedolphinsnow?

Thank you.

And finally, the link again to my book on Amazon:

http://www.amazon.co.uk/Way-I-See-Nicole-Dryburgh/dp/0340956925/ 

More tales next week…

Love Nicole xxx