My Diary – August 2007

Friday 24th August 2007

I received an email on Sunday from a lady called Maggie who told me about her daughter Martha and her charity. Martha died of a brain tumour last year at the age of seven. You can read about her and her charity at: http://martha-mickshik.memory-of.com

I didn’t go to hydro or the gym on Monday and Tuesday. I finished my antibiotics too soon last week for the urine infection, so I wasn’t feeling great. I had a call from my college to say that Sky News wanted to speak to me about my GCSE result, as well as the Guardian newspaper. I also spoke to a girl called Anna Ford who works for a company who writes articles and sells them to the press.

We had a month’s worth of rain fall here in four hours on Tuesday. Mum got soaked walking the dogs. Daizy was wearing her pink suede collar which dyed her white neck pink! Unfortunately it’s white again now.

I got the results of my scan on Wednesday. I had a feeling what the doctor would say before I saw him. I have a tiny tumour in each ear. They’re benign and about half a centimetre in size. They’re called intracranial acoustic neuromas. The one in my left ear has damaged the nerves which can’t be repaired. The one in my right ear luckily hasn’t damaged anything. The funny noises I’ve been hearing as well are due to this. Oh, and it’s rare! Surprise surprise! I’m going to see a specialist in a few weeks time, but I don’t think anything can be done. Hearing aids wouldn’t help because it isn’t that kind of problem. They think it could be connected with the condition neurofibromatosis, which my doctors have been testing me for over the years. I have parts of NF1 and NF2, but not all of one or the other, so as usual I’m not being normal. I’ve looked up neurofibromatosis and I think I definitely have NF2. I’m a bit worried about my other ear, in case something goes wrong. I’m gutted about the hearing loss not being able to be repaired because it really bugs me not being able to hear people, but it can’t be helped. I just have to wait now and see the specialist.

Sky News rang that night to wish me luck, but to say they didn’t think they were going to get to college in the morning to film me. They said they’d phone in the morning if they were coming, but they didn’t, so I knew they wouldn’t be there.

On to better results though, I got my English GCSE result on Thursday. We went to Linda’s for lunch, but only stayed half an hour because we had to go to college to pick up my result. I opened the envelope and Mum read it. I got a B which I was pleased with. It was what I was expecting. We then went to see my teacher who told me I was five marks below an A. I didn’t know if I wanted to know that, but I’m glad I do now, but I’m really annoyed about it - a B grade is 248 and an A is 279. I got 274! I know the places in the exam where I forgot to write something that would have got those extra points. I tried my hardest with my teacher to bump it up to an A, even suggesting I bribe the examiner, or write long words on a bit of paper and give it to him to show that I’m clever, but it was no good. Plus they would read my work again and mark it down and I could be worse off, so I have to accept a B. I was the only person in my class to take the higher exam. The highest mark I could have got in the foundation level was a B. I know I still got a B, but at least I know it was nearly an A! We went back to Linda’s after that to tell everyone and eat cake. I celebrated that night with my favourite drink - Archers and fresh orange.

My phone has been ringing non-stop for the last few days - mainly people from the press. The interview I did with Anna was on the BBC website and Ceefax last night. I did an interview with the Guardian today (Friday), but that won’t be coming out until next month. I’ll keep you posted.

I’ve had quite a few guest book messages lately - thank you. Please keep signing!

Love Nicole xxx

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Friday 17th August 2007

On Friday the girls came over. I haven’t seen them for a while, so it was good to catch up.

It was Molly’s Birthday on Sunday. She’s 49! Well, in dog years anyway. She’s 7 in human years.

On Tuesday I worked really hard at the gym, even if I do say so myself. I seemed to have loads of energy. I walked 14 lengths in the parallel bars, cycled 8 minutes on the exercise bike, did 50 sit ups, 50 leg lifts on each leg, 50 thrusts – not the most attractive look – and 20 push ups (I couldn’t quite manage 50 of those). Then I punched the exercise ball to get my frustration out, and sat on it afterwards and bounced up and down. Apparently it’s good for balance. Then I stood up and sat down 10 times to strengthen my legs, walked 70 steps round the gym with a frame, and I finished off with walking up three steps, along a little platform, and back down the steps. I felt fine afterwards, but wanted to fall asleep when I got home. It was also my cousin, Megan’s, 18th Birthday, so I then went to her house in the afternoon to eat cake. So much for the gym, ay…

On Wednesday I had an MRI scan to try and find out why I can hardly hear in my left ear. I was told weeks ago that they didn’t know if I would need a cannula put in for the dye, so I went prepared with my magic numbing cream. Just before I went in for the scan, they said they’d do the scan and look at the pictures, then see if they needed to put the dye in, but they said they very rarely needed to do that. I said, “Well if it’s rare, that means I’ll need it then.” I had the scan, and I managed to stay really still for a change. I had a really old CD playing, and I didn’t have a clue who the people on it were. I think it was some kind of pop compilation CD from the nineties. I could hardly hear it anyway because the scan was so loud. I was in for about 15 minutes, then they came in and said they needed to put the dye in for the last three and a half minute scan. I was thinking, typical; trust me to be one of the ‘rare’ ones. Still it’s better than being common! It so wasn’t worth it for just one scan, and I told them so, but they ignored me and did it anyway! How rude! I did my crazy crying/laughing weirdo woman thing. I even managed to eat a bit of the tissue I was wiping my eyes with because I was moaning that much and it got stuck to my lip. I then had the final scan and went home. I got chips on the way back to cheer myself up! I get the results next Wednesday.

I made cards practically all day Thursday with Nikki. I like making cards, and I have so much stuff that it took ages sorting through it and deciding what to stick on. I was really tired at the end of the day. It’s hard work making cards for five hours! I’m sending a lot of them to the Pals on ‘Post Pals’. I have this message below from ‘Post Pals’. Support them if you can please.

Post Pals is involved in the ‘Great British Duck Race’, on 2nd September. 170,000 rubber ducks will be released into the River Thames to raise funds for good causes. The first duck over the finish line will win £10,000 and there are 30 other prizes up for grabs! Ducks only cost £2 to sponsor with a little donation added on. For every £26 donated we will be able to send 100 postcards to seriously ill children and their siblings.

To sponsor a duck please visit http://www.thegreatbritishduckrace.co.uk/charitypage.php?charity=368 and select ‘Post Pals’ from the drop down menu. Pease help spread the word by posting this, putting it on blogs, emailing, etc.

If you work for a company they can register as a partner and be a big part of the fundraiser with all staff donations going to Post Pals. The closing time is midday on 2nd September. 

I think that’s a brill idea, and I’ll be adopting some ducks.

I get my GCSE result next Thursday!! Scary stuff!

Please sign the guest book before you leave.

Love Nicole xxx

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Friday 10th August 2007

Last Friday Mum and I went for a walk along the beach. We live near it, so we took the dogs and sat in the sun for a couple of hours. I want to get a tan this summer.

My Nan’s friends, Nigel and Lynn, had a pool party/BBQ on Sunday which raised £715 for Demelza. They have lots of steep steps up to their house, so I had to be lifted up and down them by some young fit men! One of them lifted me up about 20 steps, through the house and into the garden. He needed a drink afterwards! I needed two men to lift me down hours later because they’d had a bit to drink by this point! It was perfect weather for the BBQ, even if I did get bitten by a mosquito.

I saw my doctor at the haemophilia clinic for a check up on Monday. I’ve been getting funny feelings and pain in my leg with the clot recently, so I wasn’t expecting to be allowed to stop the injections, but I can! Woohoo! The pain is from the existing clot and it’s normal. I’m really happy to have stopped them, but I’m a bit nervous. He’s the expert and I trust him, but my body is really unpredictable and I don’t trust it at all! It’s going to take me a long time before I feel relaxed that I won’t get another clot. I’m at a higher risk anyway because I’m not as mobile as most people, but I’m in a better position now than six months ago because I’m not on chemo and don’t have my Hickman line in any more, and those raise the risk of clots. Plus I’m back at hydrotherapy and the gym, so I’m becoming more mobile. I still have to wear my sexy stocking for another two years though! But that’s much better than having a needle stuck in me every morning. I can’t believe I had 246 of them. If I ever go into another stage where I’m at risk of clots, then I’ve got to start the injections again, but I’m happy with that because it would make me feel safer. My appointment was at the same time as hydro, so I didn’t go. Mum started to get a migraine the day before, so she’s been feeling awful this week. We managed to just get home before she was sick.

I went to the gym on Tuesday morning. I didn’t do too much because I had a bad night’s sleep the night before, so wasn’t feeling very energetic. I still did an hour’s workout though, just at a slow pace. Plus it was really hot in the gym. After that, Nikki and I went to the chippy. I had the best battered sausage I’ve tasted in a long time. It was massive! The chips weren’t too bad either. It was perfect sunny fish ‘n’ chip weather. We then went to Petsmart. I know it’s quite a sad thing to say, but it’s one of my favourite shops! It has a boutique range which is fantastic. It’s all pink and girlie. Unfortunately pink clashes with the colour of Molly’s fur (gingery brown), but Daizy is black and white, so pink suits her great! I can’t wait to go back and get a load of pink things for her. She’s going to be such a diva dog!

I had my eyebrows waxed by my friend, Gilly, in the afternoon. They haven’t been done in a while so it was quite sore. I think a bit of my skin was ripped off actually, but they look much better anyway!

It was Evelyn’s 60th birthday on Wednesday! Happy Birthday! It was also the 7th anniversary of me being diagnosed with cancer. It seems much longer than that, but at the same time like just last week.

I did some more baking again on Thursday with Nikki. We made some truffles and triple chocolate Cadbury’s cookies. I had my nails done with a French manicure with some diamantes too.

It’s Molly’s 7th Birthday on Sunday! Aww!

Love Nicole xxx

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Thursday 2nd August 2007

On Friday Evelyn was here. We had another book day. All the editing has now been done, and I’m really pleased with the result.

On Saturday Mum and I went out dressed as Lou and Andy from Little Britain! Linda was having a murder mystery night which was cancelled at the last minute, but everyone decided still to go dressed up. To be honest, there isn’t much else I could have gone as! I looked awful, and felt very unattractive. Luckily there is no photographic evidence! I don’t think so anyway!

I went to hydro on Monday and practised walking up and down the stairs in the pool. I walked up and down three steps about three times, and was knackered afterwards.

I walked up and down the stairs at the gym too on Tuesday. Stairs are my new thing. It’s quite hard work, but good exercise. I know it will come in handy one day to be able to use stairs. I also walked in the parallel bars and cycled nine minutes on the bike.

I had a wheelchair assessment on Wednesday. I’ve been waiting three months for this, but I think it’s been worth the wait. I might be getting a sexy pink chair! There are certain things I need my wheelchair to do, like for the back to recline when I have backache, for the arms to be able to come off, etc. We were just going to get a similar one then the man we saw suggested a whole new design to help with my independence. It has the wheels at the side for me to wheel myself, but also handles at the back for Mum to push. It would all depend on the day, where I was, or how lazy I was feeling. It also comes in a range of colours including pink! I’m going to go back soon to try out a couple of chairs which were the kind of thing we were looking for, but this one is also a strong possibility. I’ll keep you posted.

On Thursday I had another pamper day with Nikki. Face mask, manicure with my new nail stuff, a nine toed pedicure, seeing as I have a nail missing, and fake tan for my legs. I also baked double choc chip cookies and made some cards, so it was quite a productive day!

I have taken the diary entries from before my 18th birthday off my website, so I don’t give any exclusives away before my book comes out! It’s not long to wait now.

My diary has been put up a day early because Evelyn won’t be able to upload it tomorrow, just in case anyone is wondering.

Love Nicole xxx