My Diary – February 2008

Saturday 23rd February 2008

It’s safe to read my diary this week. I’m in a better mood…just about.

Apologies to anyone who I made cry by reading my diary last week (I know there are a few of you).

It’s been all about my ears this week, and it’ll be the same next week, and the next and the next…

When you have a hearing aid you have to have a mould made of your ears, so on Friday I went to the Health Centre to have my ears cleaned out, only they didn’t need doing. Before we left the nurse gave me a prescription for sleeping tablets. I don’t sleep well at all, and haven’t done for five years, so I was kind of fed up with it and wanted something to help me sleep. When we got home Mum said she would just phone and make sure that the tablets had been checked against my allergies, as my own doctor is off, and they had been prescribed by a doctor who doesn’t know me. Guess what - she said she didn’t have any note of my allergies. Now if you’ve read my book then you’ll know what kind of reaction I had to the anti-fit drug I was on (I nearly died), and why I now wear a medic alert bracelet so doctors know not to give it to me again. It scares me to think that if Mum hadn’t checked about the sleeping tablets, she could have given them to me and gone to bed and, if I shouldn’t have had them, then I could have come out in a rash. It was how the other reaction started, but I wouldn’t have been able to see it happening. The doctor checked it and said it was fine for me to have the tablets, so I’ve now started taking them. It’s helping a bit, only now I want to sleep all the time!

On Monday I saw an ear, nose and throat specialist. I had a hearing test which revealed I now have a severe hearing loss in my right ear as well as my left. For the hearing test I had to wear headphones and press a button every time I heard a noise. I thought I did quite well in the test until I got back in the waiting room and could still hear the buzzing sound and I realised I might have pressed the button for the tinnitus I’ve got, and not for the test! The ENT specialist said that he would fast track me to get some hearing aids to see if they would help me hear better. I found something on the internet about a multi-channel brain stem implant (sounds lovely doesn’t it?). It said that it helped give the hearing back to people who had lost it due to Neurofibromatosis Type 2. We found out that Guy’s and St Thomas’s Hospital did the operation, but that they have only done nineteen of them. The ENT specialist said that they only did the operation on people who had lost their hearing completely because the op takes away any normal hearing you have, and you have to teach the brain how to hear in a different way. Plus there hasn’t been a lot of research into whether it actually works, so some doctors will say yes, while others will say no. I’m going to be referred to Guys and St Thomas’s anyway to speak to them about it while I still have some hearing.

On Tuesday a guide communicator called Lynne came to talk to me and showed me gadgets that could help with my hearing. We’ve tried a couple of things in the last week - like Mum using a microphone, but they haven’t worked. Lynne brought a hearing aid with her that was attached to head phones as it wasn’t made to fit my ears. It instantly made a difference. I can’t wait to get some now because I think they are the only thing that could help me to hear. She also taught me some deaf/blind sign language. I’ll admit, I wasn’t in the best of moods when she was trying to teach me. I’m finding the whole situation really frustrating. Everyone now wants to help and there’s just too much happening at once. I’m trying to be patient about it though. I learnt how to do the alphabet in sign language in one go (I’ve always been a fast learner!). The signing works by the person making the sign on my left hand, and I feel with my right. It’s easy once you know how to do it.

On Wednesday morning a lady from Deaf Services came. She was really nice and taught me the deaf/blind sign language again, as well as numbers up to fifteen. I also learnt some signs for things like putting two fingers on your head like horns, and that means cow, so beware if I do this near you - it’s not a compliment! I also learnt some very, very important words like, tea, cake and biscuit! I forgot to ask what the sign for chips was though, but she’s coming back next week, so I’ll ask then.

Wednesday afternoon I went to the Marsden to see Darren, my oncologist. His office is like my second home at the moment! I could hear his voice, but not what he was saying, so again I had to wait until we were home for Mum to tell me what their half an hour conversation was about. Darren said he will contact the specialist about my scoliosis to see if that is the cause of my backache and if a back brace will help my posture and the pain. As for the tumours in my ears, he doesn’t know what they are. They are in the location and are doing what Neurofibromatosis Type 2 (NF2) does, but we still don’t know if I have the condition yet. The test I had done to check for it was a blood sample which takes three months to test. The results should be back any day now, so it will be really interesting to see what they say. The Neurofibromatosis specialist still doesn’t think I have NF2 because I don’t have enough of the symptoms, so we’ll just wait to see what the results say.

I have a date for you to put in your diaries. I will be doing a book signing on Saturday 8th March at 3pm at Waterstone’s in St Margaret’s Street in Canterbury, so please come along if you would like your booked signed. I don’t want to sit there like Billy No Mates!

Thanks this week goes to Kate Drain and Jane Wenham-Jones for donating on my Justgiving page.

Love Nicole xxx

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Friday 15th February 2008

Two producers came to our house last Friday who are interested in filming a documentary about me. I’m not going to say too much at the moment, but I’m really excited about it.

Saturday was my 19th birthday. I woke up at 8.30am, and it took me until after 10am to just open my cards! I didn’t even get a chance to open my presents because I had to get ready to go out for an early lunch with the girls. There were four of us because Charlotte couldn’t make it. I found it really difficult to hear what the girls were saying. You’ll read later what it’s been like but, for now, back to my birthday. After the meal, cheesy chips mmmm…., Mum picked me up and we went to Linda’s to drop off my uncle’s birthday card because it was his birthday on the same day, as well as my cousin’s in Scotland. Then we came home where we found a lovely vase of flowers and a balloon on the doorstep from everyone at Hodder. I’ve never had a balloon delivered before so, thank you! We spent the rest of the afternoon at home.

It was just the way I like it, me, Mum, Lee, Molly, Daizy, a cup of tea and some Thornton’s fudge! Someone from Post Pals sent me some presents and one of them was bars of Thornton's fudge. I normally get the fudge in a bag, but it’s nicer in the bar as I’ve now discovered! I opened my presents and I got some lovely things, including vouchers for beauty treatments which I’m looking forward to using, a Radley handbag from Mum - you might remember me last year saying I really wanted one, and two more charms. One of a mobile phone and, one of a swan because I’ve sponsored one - a swan that is, not a mobile phone! Then we got fish ‘n’ chips for dinner, so it was a perfect day for me.

I received a card from a lady called Betty who reads my column in the paper. The envelope just said: Nicole Dryburgh, Seasalter, Kent, and it got to me! Mum said I’m now famous and it’s like the Queen, Buckingham Palace and Santa, North Pole!

Thank you if you left me a birthday message in my guest book or sent me an email.

On Sunday it was Lee’s 22nd birthday. I can’t believe he’s that old! We went to Linda’s where I opened my presents from the rest of my family. Linda sponsored me a dog from the Dogs Trust, so my little family of sponsored animals is coming along well. I’m now deciding on what my next one will be.

On Wednesday we had a meeting about my hearing. It’s got ridiculous now and I can hardly hear a thing. The meeting was nearly three and a half hours long, and to me it sounded like a load of gobbldy gook. I could only hear the first ten minutes. There were too many voices (six) talking, so I got too confused. We’ve found out that there are quite a few aids that I can try to see if they help. I’m going to see someone soon to discuss getting a hearing aid. We did ask a doctor last year if one would help and he said no. We’re going to try one though. I’ve now got a speaker plugged into my laptop to make it louder. I’ve been struggling to hear ‘Jeffery’ properly lately. The speaker is helping a bit but now it’s a bit too loud and it sounds like a Darlek has invaded it!

I did an interview yesterday with Jo Burn from BBC Radio Kent. We went to the beach for the interview, so we could get the sound of the waves and the dogs barking in the background. It was bloomin’ freezing though!

Here is an article I wrote for this week’s Whitstable Gazette because I’ve got so fed up. It didn’t appear in the paper like this but someone else wrote the story and took parts of this as my quotes. It was on no less than page 3!

You have been reading my column in the Gazette now for 16 months, so most of you will know I’m normally very positive and upbeat, but I’m not actually as strong as people think and I keep my real feelings hidden. Every now and then though, they come to a head and I have to let them out. I have written this to give people an insight into what my life is really like, what Mum and I go through every day, and to help people understand a bit more. I have a lot to get off my chest, and boy have I got a big one! So beware…

The main reason I am doing this is because I am so angry, upset and frustrated with what’s happened to my hearing, and the way it has been dealt with. It was January 2007 when I first mentioned to a doctor at the William Harvey hospital that I had agonising pain in my left ear. Within that week, I saw three doctors, who just said I had a lot of ear wax, and one stuck cotton wool in my ear and gave me paracetamol. I said that I thought my hearing was going and that I was hearing ringing sounds and still nothing was done. On two separate visits in April and July, I mentioned it to my paediatrician. Mum said to him she was scared I was going deaf, just like she had watched me go blind. I had a hearing test in July at Kent and Canterbury and only then, when the results showed I had severe hearing loss in my left ear, did people start to take notice.

I had an MRI scan in August of my ears, and you all know the results of that - a tumour in each ear. When are people going to realise that I know my own body, and when I say something’s wrong, something is wrong. My Mum knows me best and she wasn’t listened to when she showed her concerns about my hearing. Now, a year on from first mentioning it, I have lost 95% of my hearing in my left ear, and more than 70% in my right ear and it’s getting worse by the day. I have almost constant ringing and buzzing sounds in my ears due to the tumours, and I can’t sit up anymore without wobbling because my balance has now gone. I’m facing the rest of my life as being deaf, blind and disabled. Just for one minute try and understand what that would feel like because, believe me, you won’t even come close. What am I going to do, day in day out? I’d like you for at least ten minutes to sit in a quiet room with your eyes shut and your hands over your ears. You can’t get up and walk, and you have to ask someone to do everything for you. Now once you’ve finished doing that you can open your eyes and get up and walk. I can’t. There’s no magic cure for me.

For a year I’ve been losing my hearing and I can’t quite begin to describe how that feels. Panicky, frustrating, scary, and that’s mainly because we couldn’t get anyone to take notice. I just keep thinking of the things I’ll no longer be able to do, like hear my talking laptop. I won’t be able to write another book or continue with my column. I won’t be able to hear Mum’s voice or my dogs barking, hear my favourite music or TV. I used to listen to the radio from the moment I woke up, to the moment I went to sleep, but I don’t listen to it anymore because it just doesn’t sound right. I used to constantly flick the station from Radio 1 to Invicta Fm while we were in the car, but I haven’t done that for weeks. I can’t even talk to people in the car because it’s too loud with the engine on. I can’t hear when my phone rings and sometimes I can’t understand what my text messages say, so I have to get Mum to read them to me. I’m back to having no privacy which was the whole point of getting the phone in the first place.

I’m not going to be able to meet new people because they won’t know how to communicate with me. I’m at a time in my life where I’m getting so many opportunities, but they’re being ruined. People used to comment that I didn’t look blind, and how I used to look directly at the person who was talking to me. Now I get totally confused where people are in the room. I think everyone is standing on my right side because that’s where I can hear them, so that’s where I look, but they’re often standing on my left. It’s making me feel really stupid and I’m losing confidence in speaking to people in case I answer something incorrectly because I haven’t heard them properly.

So many professional people have known about the problem, but it wasn’t until Mum asked the children’s community nurse how would she communicate with me if my hearing completely goes that something is finally being done. We have found out that there are a whole group of people and aids that I could have been using. Why haven’t all these people been in touch with each other and come to talk to us about them?

I have a lot of other problems too. I was diagnosed with scoliosis (curvature of the spine) in May 2006. It was January 2007 before I could see a ‘specialist’, who took x-rays and said I was only 45 degrees out, and he wouldn’t do anything, but would make another appointment to come back in six month’s time. Thirteen months later my spine has got worse. I can’t sit straight or comfortably. None of my clothes look right because I twist, and which really frustrates me and gives me low confidence. I’m paranoid enough as it is about what I look like without feeling like the bloody Hunchback of Notre Dame.

I’ve had problems sleeping for the last five years, and I can’t get to sleep until after 1am, then I wake up four or five times a night, and wake at 6am and can’t get back to sleep. I’m then tired all through the day and it often makes me grumpy. I was given some tablets to try but they didn’t help, so they were stopped but nothing else was suggested or tried. I found out that people with visual impairments often have trouble sleeping because at night the brain produces a chemical that lets you know the difference between night and day, and this drug helps you go to sleep. Because it’s always nightime for me I don’t produce this chemical, and that’s why I find it hard to sleep. I discovered there is a tablet of the chemical I’m not producing which I could take and I mentioned it to my community nurse, but she never got back to me to let me know if I could have it.

For years I have been going through absolute hell with my needle phobia and most of my doctors and nurses knew how bad it was. I was having nightmares about the needles, panic attacks and would feel faint even when I wasn’t having one stuck in me. It was only when I got sick, fed up feeling like this because it was ruining my life and getting no help from the doctors who knew about it, that I decided to do something about it myself. I visited my GP, who I never go to because I’m supposed to deal with specialists, and she suggested taking Valium. When I took it before I had my next cannula put in, it helped a lot. Could someone not have suggested that before?

In July I had a new bath chair delivered which inflates while you sit on it to raise you up and down. Three times we’ve asked for my old one to be picked up, yet it’s still getting in the way in our hall. Mum explained to the occupational therapist that I would need some kind of support rail to help me, but there isn’t anything in her catalogue. I don’t feel safe in the bath because we’re in a rented property and we aren’t allowed to fix anything to the walls. Because of the ear tumours my balance has gone and I’m always wobbling and banging my head on the tiles. Mum struggles to get me in and out of the bath safely because there’s nothing for me to hold onto to be secure. Whenever we go somewhere like to a hospital, they always say they can’t lift me because of health and safety. Well what about Mum’s health and safety? In the five years I’ve been disabled no-one has ever shown her how to lift me properly or the correct way to lift my heavy wheelchair into the car.

Although our rented bungalow is a perfect size it obviously can’t be adapted for me with permanent handrails etc. The rent is high, which the council will only pay half of, which leaves Mum with £8 a week left from her benefits once she has paid everything else. The only advice they give Mum is to move to a cheaper bungalow. She’s tried but there aren’t any that suit all our needs. We’re not sure if we’ll ever get the offer of a council house in the areas that we’ve asked for near our family.

I’m in pain emotionally and physically every single day, and there is so much going on at the moment. I try so hard to stay positive and not let things get me down, but it’s hard when things go wrong, and we get no support from people. I’m fed up with people letting me down and just biting my tongue and accepting it.

And all of this is just the tip of the iceberg of what’s been going on, and continues to go on. I know this will get a reaction and people will start phoning me, but I’m afraid it’s a case of ‘too little, too late’. Besides, I won’t be able to hear you.

Ooh I’m a stroppy cow sometimes, aren’t I! But it had to be said. I’m just really fed up and frustrated at the moment and I make no apologies for it. On a good note though, today is one year in remission! I think that’s a call for the Archers and fresh orange!

I might be in a better mood next week, but then again I might not. You’ll just have to come back next Friday and find out!

Love Nicole xxx

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Friday 8th February 2008 – Happy Birthday Char!

I had my MRI scan on Friday, and it went surprisingly well without any problems. Not even any tantrums or tears with the cannula. I was a very good girl even if I do say so myself. The cannula was put in almost as soon as we got there which was good because I didn’t have time to get worked up. I took a valium tablet in the car on the way there, so that helped too. I felt a bit panicky while it was being done, and if I’d let myself, I could have cried, but I didn’t. That’s a massive improvement because before I couldn’t control it and just used to burst out crying. I think I could finally be overcoming my fear. I still have a long, long way to go though.

I managed to get a quick cup of tea (I think I’m addicted) and then it was time for my scan. I was in the scanner for just over an hour and I managed to stay quite still. There’s a new type of scan that they insist on doing to me where the whole bed that I’m lying on shakes violently. I hate it and it scares the hell out of me. I have this image of the whole machine crashing on top of me. It only lasts a couple of minutes thankfully. We got home at 4.30pm and I was straight back in the car to stay the weekend at Demelza House. I was staying at the same time as my good friend, Shahira. We didn’t do much that night because I was quite tired. I think the valium was wearing off, so we just got a take-away and chatted.

We had a relaxing day on Saturday. We were going to go out for a meal at night but I went for a lie down in the afternoon and fell asleep! When I woke up I wasn’t in the mood to go out so we got another take-away and spent the night in the adolescent room.

I came home from Demelza at lunchtime on Sunday, and had to get ready for an award ceremony that afternoon at the Winter Gardens in Margate. Last year I won a ‘Try Angle’ award which is a local award for children in Kent for special achievements. Sunday’s award ceremony was the ‘Spirit of the Try Angle’ award which was presented to eighteen of last year’s 150 Try Angle winners. The ceremony lasted two hours, and each winner was presented with a lovely trophy which is like a chunky block of ice. I’ve won three Try Angle awards since 2005 and I’m now on the panel to help organise the awards. I’m really excited about helping with this year’s awards. I just hope they’re ready for a load of ideas of pink things and chocolate!

If you regularly read my diary then you’ll know that my Mum is a bit of a fruitcake. This week’s cringe-worthy mum moment was that she asked me on Monday night to email Matt Hoople who writes for the Gazette to ask if he could send back some old photos he borrowed a few weeks ago. I did, and when Matt got to work the next day he phoned at 9am and said, “I’ve just had an email from Nicole.” Mum, not understanding the internet at all, replied with, “Did you? That’s funny, she’s asleep.” He had to explain I had sent it the previous night but he only read it when he got into work! He then informed her that he actually gave her back the photos at my book launch. When she checked, she found them! Honestly she needs an ASBO or something!

Wednesday was the Dogs Trust Honours, and it was great! We got a call on Tuesday night to ask if I would do a live interview for Channel 5 news on Wednesday morning about Molly and Daizy. I said yes and after a bit of rearranging and organising, we were picked up at 8am on Wednesday by our taxi and taken to a film studio in London. We had Molly and Daizy with us, and Daizy’s not the best of travellers, bless her, so as soon as she got out of the car, she threw up everywhere! Not the best of first impressions! They had decided that it was probably best to pre record our interview because it would be a bit chaotic with the dogs. A make-up artist came and put a bit of powder on my face and lip gloss on, which was brilliant because I had actually forgotten my lip gloss! It was only a short interview, about three minutes long, and I was interviewed with Clarissa Baldwin OBE, the Dogs Trust chief executive.

We finished the interview by 11.30am, and then headed to the Dogs Trust flat in London. Unfortunately there were no dogs there. It was just their offices. Like I said earlier, Daizy isn’t the best traveller, nor is she the classiest of girls, so what did she do when she got in the flat? Right in front of Clarrisa? Pooed on the carpet by the coffee table! Honestly she picks her moments! She hasn’t done that for about three years! Mum had taken them for a walk, but there’s no grass in London and they refuse to go to the toilet on concrete. Molly found a cardboard box to pee on! Anyway we spent the afternoon in the flat and were looked after well by the people from the Dogs Trust. They had a bed in the flat so it gave me the chance to lie down for a while.

We started getting ready at about 4pm. I wore a dress. Yes you read that correctly, a dress! It was a long one though and very nice. I did feel strange in it though because I never wear dresses, not even skirts! Oh and I mustn’t forget the sexy tights I also wore! We were the first to arrive (for once!) at the Guildhall in London. It was brilliantly decorated with a yellow carpet with paw prints on it, cocktails such as ‘pugs and kisses’, dog bone shaped biscuits for humans to eat and lots of dogs! There were about twenty dogs and Graham Norton was the host for the night, and his dog is from the Dogs Trust. Molly and Daizy were definitely the cutest though and were looked after for most of the night by the dog handlers in the green room. Molly loved it but Daizy didn’t.

There was a competition in the Sun newspaper to win tickets to the night which my publisher entered, and only bloomin’ won! She won two tickets and it was great that she and the managing director of Hodder could come along and were able to be on our table. We had a lovely three course meal, and strangely the pudding was my least favourite part. It was a mixture of ice cream, a chocolate straw and a chocolate paw print. Only problem was that the ice cream was nutmeg flavour which didn’t taste too nice, plus I’d had a rabbit called Nutmeg, so that kind of put me off too! After the meal the winners were announced. There were five categories and a short video of each nominee was shown. Molly and Daizy had come back to our table by this point. I had a feeling that they hadn’t won, and wasn’t surprised when they announced the winner in our category was a dog called Jake. He was a springer spaniel who helped in the July 7th London bombings. He was the real ‘hero’ as he’d helped save lives, so I was pleased for him. Molly and Daizy are only my heroes, and I already know that so it didn’t matter that they didn’t win. We still had a brilliant night. I was totally shattered by the end of it and didn’t get to bed until 1.30am.

It was weird because while we were waiting to hear the results on Wednesday night, I was sitting there half hoping they wouldn’t win because it would mean that my scan results would be good. I don’t know why I thought that, but as usual I was right, because when Mum checked the answer machine on Thursday there was a message from my oncologist to say my scan results were fine. My backache isn’t due to my tumours growing again which is a huge relief, because I was really expecting bad news. We’re just going to try and find out now why I’m getting backache.

Molly and Daizy refused to get out of bed all day on Thursday. They were totally shattered from their day out in London! Thank you to everyone who voted for them in the Dogs Trust Honours. Better luck next year!

Tomorrow is my 19th birthday. I can’t believe how old I’m getting! I haven’t asked for anything specific and will be happy with whatever I get, because I already have everything I need, and everything I want is either - not possible, or it’s too expensive!

Love Nicole xxx

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Friday 1st February 2008 – Happy Birthday Rach!!

It’s been another quiet week. My P.A. is on holiday, so I’ve not been up to much. Just planning things, which is very dangerous indeed…

Last Friday I went to Pets at Home to buy treats for Molly and Daizy. I needed to get Daizy a new collar for the award ceremony for the Dogs Trust Honours next week. I got her a pink one with diamantes along it. I also got a diamante covered bone shaped dog tag to dangle off it! She’s really going to sparkle on the night! They do great toys in the boutique range, so I also got them a little pink fluffy shoe and handbag! Plus chews and bones and things. I could have bought the whole shop though. Their dogs’ beds are amazing! Maybe another day…

Thank you if you’ve voted so far for Molly and Daizy in the ‘hero’ category for the Dogs Trust Honours. You still have until noon on the 5th to vote, so please keep spreading the word! Vote by visiting:

http://www.thesun.co.uk/sol/homepage/woman/real_life/article723942.ece Thank you.  

As I don’t have much else to say, and there has been a lot of new people to my website recently, I thought I would repeat some of the things I’ve written about before as there are new people who could help.

I have thousands of freepost envelopes where you can put your empty ink cartridge from your printer and post them to the company. It costs you nothing and each cartridge will raise £1 for The Silver Lining Appeal. If you would like some, or own a business that uses computers and don’t do anything with your empty cartridges, then please email me at: nicole@c-h-o-c.org.uk

Post Pals is a website with poorly children and the aim is to ‘post a smile on a sick child’s face’. Each child has their own page about themselves and you can write a card or letter to the child, or even send them a gift to cheer them up. I’m on the site too and it really does make a difference, so if you have a spare five minutes please visit www.postpals.co.uk  and write to a child. Thank you.

You might have noticed my new Justgiving badge at the top of my diary. Funky isn’t it? I’m going to be updating my Jg page next week, so keep checking it.

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

I can’t believe this is my last week of being 18! Next Saturday is my 19th birthday. I’m getting so old!

Thanks for all the lovely guest book messages. Please keep signing and don’t forget to leave your name. Thanks.

I had my MRI scan today, so I’ll tell you all about that next week.

Love Nicole xxx