My Diary – March 2008

Friday 28th March 2008

I’m not feeling well enough at the moment to do my diary, so I will do a double dose of diary next week. I will leave you with a photo of last year’s abseil, and this is the same building I’m abseiling from in July!

Thank you to the people who have sponsored me so far, Penny, Pam, Margaret, Sarah and Lorna.

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Friday 21st March 2008

It’s been an up and down week as usual.

I went back to the gym on Tuesday. It was great to be exercising properly again. I didn’t do too much and only walked ten lengths in the parallel bars, cycled five minutes on the bike and did some exercises on the bed. I ached quite a bit afterwards but, hopefully, the more I start doing again, the less it will hurt afterwards. I need to do more exercise because I’m in training for my next sponsored event. More on that later!

What a day on Wednesday. We had another meeting about my hearing. It was at the hospital with lots of people. It meant me sitting again for two hours in a daydream because I can’t hear what’s going on. I can just hear mumbling. I’m still getting really bad backache, so I wanted to be lying down in bed instead of being at the meeting. My legs kept spasming too and I just felt woozy. I was in a bad mood too because I’m getting slightly p’eed off with people who keep coming up to me and patting me like a dog to let me know they are there. I know I don’t have much choice now because the sign language on my hand is the best way for me to communicate, but it’s still annoying, especially when I’m in a bad mood! I’m having to do a lot of deep breathing!

I then went to get fitted for my hearing aids, and as usual things didn’t run smoothly. It was my fault this time though. The man doing it looked in my ears, then put a pair of headphones on me, so he could programme the hearing aids. They were weird though because they didn’t actually cover my ears, but just kind of hooked onto them. He then put a tube in my ear, which felt a bit tickly, but then he put another tube in which really hurt. I panicked because I didn’t think it was going to hurt and thought he had done something wrong. I just don’t trust anyone anymore with what they do to me. He then started programming the hearing aid, but my back was so sore and I was still in a mood, so I started crying! I really tried not to, but I couldn’t help it. It hurt my ears even more because it made the tube move. He took the tube out so that I could cry, then once I stopped, he put it back in! Once he had finished with that ear, he put the tube in the other ear. He used a computer to make really loud noises in my ear to programme it, which hurt too. I just wanted to keep crying. Once I start these days I can’t stop. They decided it would be better if I go back later to have the other one fitted, so I only came away with one hearing aid. I don’t actually know yet if it helps. It makes things louder, but voices are fuzzier. I’m going to have to get used to hearing things differently. We finally got home at 7pm. We got Chinese for dinner that night. I think I’m now back on the craving for chicken balls!

My friend, Nikki, and her baby, Jak, came over on Thursday. It’s good because Nikki knows the deafblind alphabet, so was able to sign on my hand. I was in a much better mood to have this done on Thursday. We are just starting to organise a fundraising event together for the summer. The main problem is always finding a venue, but I’m contacting a few places, so hope to get that booked soon. I’ll keep you up to date with the plans! I had a cuddle with Jak again, and this time he didn’t cry. He also had a nibble on my toes. Luckily for me and him I had slippers on!

I’d now like to announce my next sponsored event. On 6th July I will be doing a 100ft abseil. Yes, I did just say a 100ft abseil. It will be off the Golden Jubilee Wing at King’s College Hospital, and I will be strapped to a fit young man (fingers crossed anyway!). I had to wait for permission from my doctor before I could say yes to doing it, and he has said it’s fine. Well, he actually said, “Apart from this indicating the fact that you’re clearly completely mad, I see no reason at all why you can’t take part.” He’s known me for over seven years, so he knows what I’m like!

You may be wondering why a girl like me wants to do a thing like this. The main reason is to raise as much money as I can for The Silver Lining Appeal, so that I can reach my £30,000 target. The other reason is that life gets pretty boring sitting on my backside all day, and I have to get my kicks somehow! I need some excitement and 100ft drops take my fancy! Plus, like I said, I’m hoping to get strapped to a fit young man…

I need to raise at least £100 to do it, and to be honest, I’m not doing it for any less than that anyway! So please, please sponsor me through my Justgiving page:

www.justgiving.co.uk/nicoleschallenge

If you’ve read this and are feeling quite jealous, then why not abseil with me. Seriously, if you’re interested email:

kingsappeal@kch.nhs.uk

and you too could be abseiling 100ft down the side of a hospital in the middle of London. Don’t say you’re not tempted!

A massive, massive thank you to everyone at Knoxland Primary School for raising an amazing £1,200 at their fundraising event on Monday. That now brings me very close to the £20,000 mark!

Have a great Easter!

Love Nicole xxx

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Sunday 16th March 2008

Apologies for the late diary. I’ve had loads of emails to reply to, letters to write, things to plan…

Megan my PA was here on Friday (7th), and we parcelled up Silver Lining Appeal merchandise to send to some people who are helping me reach my £30,000 target. My little cousin, Lisa, who lives in Scotland, did a review of my book in front of her class. Her teacher then read my book, and very kindly said she would like to do something with her class to help me reach my target. The whole school are now involved and they’re having a fundraising day tomorrow where everyone has to wear pink and black, and there are lots of stalls including a nail bar and guess the teddy’s birthday. Thank you to everyone who has helped organise it, and to all Lisa’s friends who have been signing my guest book lately.

Well, Saturday was my book signing at Waterstone’s in Canterbury, and luckily people turned up! I used my special stamp which I sign books with. I signed a piece of paper which my publisher had made into a stamp. We arrived at Waterstone’s at 2.15pm where we met Fritha (publicist). I started stamping at 3pm. I signed about 50 books as well as some Waterstone’s stock, and it was lovely meeting the people who have bought my book. I couldn’t hear anything that people said to me though. I was supposed to get my hearing aids in time for the signing, but didn’t, so I was really disappointed. Luckily Mum has now learnt the deafblind alphabet, so was able to talk to me by signing on my hands. One man thought she was a palm reader! My friend, Nikki, who used to work at Demelza, came along with her husband, Stephen, and baby, Jak. Nikki knows the deafblind alphabet, so was able to talk to me. Jak signed ‘hi’ on my hand with his tiny hands. Very clever for a seven-month-old! I had a quick cuddle with him too. I was filmed by Pilgrim Productions, or as I like to call them, Penguin Productions. I thought that’s what Mum said they were called and now I can’t get that out my head and keep calling them that. I even told Robert Leslie from BBC South East News the other week that I was having a documentary made of me by Penguin Productions. I didn’t even realise until Mum laughed at me. Anyway, they are going to film me doing some more exciting stuff over the months, so I’m really looking forward to it.

I was given some lovely presents from people who came to get their books signed, including fudge, a pink scarf and three chocolate croissants! I also got given the best mug ever! It’s pink on the inside, and white on the outside, with a pink shoe and handbag on it, and it says ‘Love pink handbags, live pink shoes’! It’s brilliant. It also says ‘Think pink’ on the bottom, which I always do! That was from Claire, who I chat to on email, and she travelled from London to be there. She also gave me some Thornton’s fudge…in a bar! So as soon as I got home I had a cuppa in my new mug and ate the fudge!

Back at the book signing though… We had a collection box for The Silver Lining Appeal, and the money raised was matched by Hodder, making the total £131.40. Thank you if you turned up and made a donation.

After the signing we went for tea and cake with Margaret and Fritha. My Nan, Lee and his friend, Will, were also there. It’s only when people have to spell things on your hand that you realise how bad their spelling is. In the café Mum asked me if I wanted a brownie, or should I say a broniwe. Her excuse was that she forgot the ‘w’. She remembered it at the end so just decided to stick it there! Honestly, she should have been eating fruitcake…

I had a brain MRI scan on Monday at Kent and Canterbury Hospital. I’m seeing a specialist next month at St Thomas’s Hospital to talk about a multi-channel brain stem implant which could possibly help with my hearing, and they needed me to have an MRI scan before I see the specialist. I needed a cannula put in to inject dye. The valium and deep breathing went out the window, and I cried like a baby. I actually didn’t even try not to. I just wasn’t in the mood to try and control myself. We had spent an hour in the car park trying to find a space, then had to wait a while in the children’s ward to get a doctor, so by the time it came to putting it in, I was already crying. I just never know now how I’m going to react to it. I thought I was getting better, but obviously not! I was only in the scanner for fifteen minutes, so it hardly seemed worth it, but at least it meant it was over with quicker. Mum stopped at the chip shop on the way home to cheer me up!

I was supposed to be going to St Thomas’s Hospital on Wednesday to get the results of the neurofibromatosis type 2 test I had done in November, which was a blood test that takes three months for the results. I was really looking forward to going because I’ve been suspected to have type 1 since I was eleven, but don’t have all the symptoms so have never been diagnosed. The tumours in my ears are a sign of neurofibromatosis type 2 which is why I’ve been tested for it. When Mum phoned to book transport she was told that a new policy was in place and I would no longer be able to get hospital transport to London and I would have to get the train. When Mum explained I was in a wheelchair she was told there are ramps that the guard would get out for us to use. She was also told that you have to have a very good medical reason to get transport now. Well, if I don’t have one, I don’t know who has! Mum agrees that she has a mobility car and it could be used for these journeys but she is not confident driving in London, and that’s before you even think about parking. These days you’d get stopped for eating a banana while driving, so how is she meant to sign my hand? If this is the new rule I will not be able to go to any London hospitals again. We always have problems getting to London and I have had to turn down a lot of events that I would have loved to go to. We have got a taxi a few times, but you can imagine how much that costs… maybe Mum should take up palm reading after all!

So we didn’t go to St Thomas’s on Wednesday for the results, but we got a letter that morning from the neurofibromatosis specialist with the result… negative. Mum and I were quite shocked because we were convinced it would be positive. The letter said that they believe the tumours in my ears are connected with my original tumours. At my last meeting with my oncologist he said it was very unlikely for those tumours to reseed up to my ears, and attach themselves in the exact same place as NF2 tumours. I was quite confused about what the result meant so got in touch with my oncologist. He said the tumours could still be a sign of NF1, although very unlikely, but then the chances of my other tumours travelling to my ears is very unlikely too. Plus who’s to say the NF2 test isn’t wrong. You all know my luck with things going wrong. So I’m not quite sure what my body is up to at the moment. I will have a scan of my acoustic nerves in a couple of months’ time and see if anything has changed.

I went to Demelza from Wednesday afternoon until Friday morning. I had a relaxing time there and had a hand and foot massage on both days. I had the piece of paper with me with the deafblind alphabet on it so they photocopied it lots of times and stuck it round the house. By the end of my stay most people were quite good at it.

Just a little event to tell you about that is happening on Saturday (22nd) at Seasalter Christian Centre, Faversham Road between 4-5.15pm. My little friend, Ben, is having an Ishmael Praise party for his 5th birthday, and you’re invited along! Entry is free, and hot dogs and drinks will be available afterwards by donating to either The Royal Marsden Children’s Brain Tumour Fund, or The Silver Lining Appeal.

I’ll try and be on time with my diary this week…

Love Nicole xxx

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Friday 7th March 2008

We went to Linda’s for a roast dinner on Sunday for Mother’s Day. I say roast dinner, but what we got was Christmas dinner. Yep complete with a turkey and Christmas pudding! Well you know what my family is like…

Three of my best friends came round on Monday. Mum showed them the deafblind alphabet and gave them a piece of paper with all the signs on, so we then spent the next two hours talking through that. They picked it up quite easily and I’m a lot happier now that they’ve learnt it and we managed to still have a conversation. We’ve decided on a few signs of our own and objects (from their handbags) I can feel to let me know which one of my friends is signing on my hands. My friends are no longer called, Kerry, Charlotte, Rachel and Nicola, but to me are now known as, Bling, Blusher, Keys and Vaseline! One of my best friends is away at Uni at the moment, so we’ll have to teach her when she comes home at Easter. We’re going to go out for a drink but there aren’t signs for Archers and orange or Smirnoff Ice, so we’re going to have to think up our own signs for these!

I was on BBC South East news on Monday night. Here is the link to the footage: Nicole's story

Julie from Deaf services came back on Wednesday. This time I learnt the signs for lots of different animals. The sign for snail is brilliant! When I’ll ever have to use it I don’t know, but I love it! I also learnt dog, cat, horse, swan, giraffe, pig, sheep, monkey, bird, mouse, donkey, zebra, elephant, snake - I think that was it!

A big thank you this week goes to Tisha and Angela Smith (Rachel’s Grandma!) for donating on my Justgiving page. I’ve very rudely been knocked from the number 1 spot on The Silver Lining Appeal’s top fundraisers list, to number 3! I am determined to reach my £30,000 target by the end of the year. I’m working on a big fundraising event for the summer, so beware! I also hope to announce next week what my next sponsored event will be! I’m saying nothing at the moment, but just note the exclamation mark after the sentence!

Don’t forget if you’d like me to sign your copy of my book, then I am doing a book signing at Waterstone’s in St Margaret’s Street in Canterbury tomorrow from 3pm.

Love Nicole xxx

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Saturday 1st March 2008

Wow it’s March! Where does the time go?!

It’s been another week all about my hearing. I saw a specialist on Monday about getting hearing aids. I had another hearing test which was a lot longer this time. It lasted about twenty minutes. It’s actually really hard to concentrate for that long on listening for different pitched beeps and pressing a buzzer when you hear one. Especially when you can’t hear it properly. The results showed I’m profoundly deaf in my left ear, and severe to profoundly deaf in my right. I also had moulds taken of my ears to make the hearing aids, which was quite strange while it was being done. The specialist put a bit of foam with a piece of string attached right in my ear. He then filled a syringe with gungey stuff and squirted it in my ear. It took about two minutes to set, then he pulled the string and pulled the mould out. He said I had lovely small inner ears, which is always nice to know! I should hopefully get the hearing aids next week. I can’t wait to see if they actually help. I think they’ll take a bit of getting used to though.

On Tuesday we had another long meeting (4 hours) about what could help with my hearing. This time it was with the guide communicator who came last week, my ex-teacher from St Nicholas’ School and two people from the charity, Sense, which helps deaf-blind people. There are a few gadgets on the market that if I lost my hearing completely might help, but it probably means I’ll have to go back to using Braille. The reason I gave that up in the first place and got my talking laptop was because I found it too difficult. I don’t have great feeling in my right hand because I’ve had a stroke, so I found it difficult to feel the Braille. I don’t really want to go back to learning it, but if it has to be done, it has to be done. It’s interesting finding out about the things that could help, so I’m feeling a bit more positive.

I had my eyebrows waxed on Tuesday afternoon. They hadn’t been done for five weeks, which should be a crime! They’re now ready for my book signing next Saturday at Waterstone’s in Canterbury. Now I just have to sort out what to wear!

I had quite a lazy day on Wednesday. My community nurse came in the afternoon to see how I was, and later, a lady called Rosie, who is a teacher for hearing impaired children. She brought a machine with her which you attach headphones to and a microphone. I wear the headphones and Mum speaks into the microphone. You can adjust on the machine the pitch, etc. to the levels that suit best. There was only one problem with it - when we tried to use it the mic didn’t work. Is that typical or what! Rosie then had to go back to her office, which was closing for the night, find another one and come back. We then found out it needed batteries! So eventually we got it working. I still couldn’t hear things properly. It made Mum’s voice louder but more fuzzy. She had to say words and I had to say what I thought they were. I got three out of five in the first test, then zero in the next four. I ended up answering weird things like umbrella when she said spam! I couldn’t work out short sentences either. When she said “The man cleaned his shoes,” I replied with, “The man killed who?” But as soon as she said, “Do you want a chocolate muffin,” I heard every word!

It was quite a busy day on Thursday. Robert Leslie from BBC South East came at 10am to film me talking about my book and learning deaf-blind sign language. We filmed the interview in the house and then went to the beach to get some footage of us there. He left at 12pm, and at 2pm a photographer called Mike came from The Daily Mirror. I’ve done an interview with a lovely free lance journalist called Adrian for the newspaper. We went to the beach again to have the photos taken, as well as having some done in the house. I had to sit on the pouffe with Mum, then I sat on the floor and did some posing there. Daizy just kept trying to climb on me because she didn’t understand why I was on the floor!

As we came back from the beach, Julie, from deaf services, arrived. This time I learnt the signs for chips, chocolate, fudge, lemon bon bons, sausages (that’s a funny one!) pink and black! I also learnt signs for ‘I’m going’ and ‘I’ve been’ but I won’t be using those as much as the other words!

Thank you to Joanne McGroarty for donating on my Justgiving page this week.

I am getting near to visitor number 30,000! If you are that person, please sign the guest book. You can find the visitor counter at the bottom of the home page.

Love Nicole xxx