My Diary – September 2008

Monday 29th September 2008

Hello, remember me? Sorry for the delay in my diary. I have no excuse, I just simply wasn’t up to it. I am now though, so here’s my news…

On Wednesday 10th my friend, Jules, came round to take some professional photos of me. The Teenage Cancer Trust have made some cards with information about ‘Nicole’s Fund’ on it so that I can hand them out to people and help spread the word about my new fundraising target. We needed a nice photo for it, and Jules took some lovely ones of me and the dogs on the beach. This is the photo which is on the cards. What do you think? Jules said she thinks I look like a cross between Cher and a clean Amy Winehouse. Hmmm…I now have the cards made, so if you’d like some to hand out to people, or know a shop etc. where I could leave a pile, then please email me!

On Friday 12th I went to an award ceremony in Maidstone for the Kent Deaf Children’s Society. I won the Young Deaf Adult award, and was given a lovely framed certificate and bouquet of flowers. I don’t know who nominated me for the award, but thank you if it was you. I can’t help but smile that I’ve won an award for being deaf, because I don’t think of myself as deaf, even though I am. I still forget sometimes that I’m blind and that’s been almost six years now! A funny moment at the end of the night was when Mum wheeled me back into the hot room and said, “You’re now beside a fan.” I got my hand ready to say hello, so imagine my disappointment when I then felt the cold breeze. It wasn’t the type of fan I thought it was going to be!

I also have great news about the other two awards I was nominated for: Cosmopolitan Magazine’s Woman of the Year, and the Youngminds book award 2008. I’ve made it to the shortlists for both of them!! The Youngminds book award has a shortlist of six books, and I’m not sure about Cosmo’s award. Both award ceremonies are in November, so I’ll keep you posted!

On Thursday 18th I went to see my GP. I think I could finally be getting sorted out. We booked a double slot, but I think we might have used three slots. I had an examination, including having my pulse felt, blood pressure done and she also listened to my chest. All was normal. She doesn’t really know what’s wrong with me at the moment, so I’m going to have some more tests including an ultrasound, see some more people and take a few more tablets. She said my back pain could be chronic pain, so basically it’s always going to be there. I think it’s just everything my body’s been through over the years catching up with me. I’ve now to take Paracetamol three times a day to build up a pain barrier, so it shouldn’t hurt so much. We’ll see what the other tests show first, though, before we settle on chronic pain.

Last Thursday I had an MRI scan at the Marsden. It was a really long day - picked up by hospital transport at 9am, and not getting home until 7pm. I’m pleased to say, though, that I was as cool as a cucumber with the cannula. I didn’t even have a real panic attack while it was happening. The scan was the usual 90 minutes long, and we then had to wait over an hour for transport home. I get the results of the scan on Wednesday. I was supposed to go into Demelza that night to stay until Monday, but I was tired when we got back, and not in the mood to then go out again, so I went there early Friday morning.

On Friday afternoon I went shopping to Hempstead Valley. I was only there for an hour or so because my back was killing me. That night I discovered Demelza’s new swing - it’s brilliant! It’s kind of like a giant hanging basket, and you sit/lay down in it and someone swings it! It’s not the usual kind of swinging that happens on a Friday night!

On Saturday I had two of the best visitors - Molly and Daizy! My cousin, Megan, brought them over. We spent about an hour in the garden. I took them to see the sheep, and then we all went on the swing! Molly loved it. Daizy on the other hand wasn’t too impressed! And on Sunday I came home. Mum had been away for the weekend with Nanny, Linda and Lesley for Nanny’s birthday, to somewhere where Nanny was evacuated during the war. They then picked me up on the way back, so I came home a day early from Demelza.

And I think that’s all my news. I can’t guarantee when my next diary entry will be up, but please don’t worry if I don’t update for a while - I’m fine, just busy, so I’ll update when I can, or when I have exciting news.

Love Nicole xxx

**********************************

Sunday 7th September 2008

An up and down fortnight as usual…

On Wednesday 27th my ultimate dream came true - I held a monkey! It was at Port Lympne zoo, and was organised by Pilgrims Productions who are filming me at the moment doing things on my wish list. The monkey was a Diana monkey and called Keymon. He was four-and-a half months old and was tiny with a really long tail and looked like Marcel, the monkey from the series Friends. His fur was really soft and he actually felt more like a cat to me. When he first came out he was cuddling a gorilla teddy in the keeper’s arms. Keymon is being hand-reared at the zoo at the moment, but he’ll soon be joining the rest of the monkeys full-time as he only joins them during the day just now, and then sleeps in a shed at night. I was fascinated by his hands/feet. They felt like a baby’s hand wearing leather gloves and he kept holding my hands and jumping all over me! I absolutely loved it! He seemed to like me and I think it was because my lap was like a little platform for him to jump on! I got to spend about 15 minutes with him, and it really, really put a smile on my face. It’s been my ultimate dream to hold a monkey for the last eight years. When I was 11 and having my radiotherapy at The Royal Marsden Hospital, they had a rack of leaflets for places you can go. I picked one up for Monkey World in Dorset, and I’ve loved monkeys ever since and have an adopted one in America. I never thought I’d be allowed to hold one, though, but now I have and it was brilliant, and it just shows, dreams really can come true!

Unfortunately, though, I didn’t stay happy for long, as on Friday it finally happened - I broke down. I’m not quite sure where it came from, but it just happened, and in true Nicole style, it was quite dramatic! I woke up in a good mood, so wasn’t expecting it. Mum was told early morning that yet again a problem I’ve had since January, and can’t seem to get sorted, has come back negative, and yet I still feel ill. I then went into a bad mood and started to have a major panic attack. I haven’t been feeling right for a long time, and my heart seems to keep racing, and I think now that it’s due to me panicking. My back has been aching a lot, I don’t feel like I have any energy anymore and I generally just feel crap. Mum came into my room while I was holding my heart and trying to breathe normally, and asked what was wrong. I then just burst out crying and couldn’t stop. I couldn’t breathe properly because I was panicking, and it lasted over 5 minutes. My hands and feet went all funny and I just felt awful. I finally managed to calm down and Mum asked again what was wrong, which set me off again! This has been a very long time coming. I don’t cry or show emotion and keep everything bottled up, so every once in a while, it all comes out like this.

It’s all got a bit much - the hearing aids don’t seem to be helping me at all, people keep talking about me learning Braille again which I’m not ready for. I’ve tried gadget after gadget to help with my hearing and they just don’t work. It’s disappointment after disappointment and I can’t take it anymore. No-one understands what I’m actually going through. I’m trying my hardest to keep positive and keep going, I really am, but it’s difficult at the moment. My ‘moment’ lasted about 20 minutes. I did feel better afterwards (I think), but I still have a lot to deal with. Mum has now cancelled a few appointments and made a few others. Now that it’s out in the open though, hopefully it’ll be better and people will try and understand more and not judge, but we’ll see…

On top of the problems I always have, Mum has had a major worry for the past few weeks. She found a lump and was worried that if it turned out to be cancer and needed treatment, who would look after me and would this be the third Xmas in a row spent in hospital. Within two weeks of seeing her doctor, she has been to Kent and Canterbury Hospital and had a mammogram, ultra sound etc. and the good news is that it was nothing more serious than two cysts, which have now been drained. I wish my problems could be seen and sorted as quickly. I’m just glad Mum is OK.

On Wednesday I saw my oncologist, Darren, at The Royal Marsden Hospital. Mum made an emergency appointment as my back has been really bad and I was worried. Speaking to Darren, though, really reassured me. I think I’m just paranoid, but I’m going to have a scan at the end of the month anyway to put my mind at rest. Darren said he didn’t think I had anything to worry about, but he knows what I’m like, and I don’t ask for scans unless I think I need one. I’ve been convinced, though, that my last two scans would be bad news because the pain in my back and arm have been constantly there since last year, but the fact that the results have been good from those scans despite the pain, I’m not as worried anymore. It will just be good to have the scan and know for definite if I’m still in remission.

On Thursday I was supposed to have my first Braille lesson, but that was one of the appointments I cancelled last week. I’m just not ready to learn it again, and the more people go on about it, the more I don’t want to do it. It’s in case I lose all of my hearing and the only way I could still use my laptop is with something called a Braille Display. I just don’t want to think about that at the moment though.

In the afternoon I went to my friend Diana’s house. She’s recently moved near us, so we went to her’s for a cuppa. I also met a few of her neighbours who are going to help me organise my ball. We had a good get together and now have lots of new ideas. Nothing is definitely planned for it yet, but it will be sometime next year. It’s going to be brilliant though!!

On Friday I went to St Thomas’ Hospital to see Terry about my hearing aids. It was a check up appointment to see how I’ve been getting on with them, which I have to say, not very well. I haven’t worn them a lot because they are more frustrating than you could ever imagine. As soon as I put them in they put me in a bad mood and make me want to cry. They just don’t seem to help and I take them out soon afterwards. It’s only been since my ‘little moment’ last week that I’ve worn them properly. I’m really trying to get used to them now because I want them to work. I’ve worn them everyday this week so far, and I think I might be getting used to them just a tiny bit.

Because I haven’t worn them properly though, the check up wasn’t what it should have been. I was supposed to have hearing tests to see how the aids had helped, but it would have been an unfair test as I hadn’t worn them for the ten weeks that I was supposed to, and I have no-one to blame but myself. I had another kind of hearing test instead, where sentences are read to me and I have to repeat what I thought they were. I did better than Terry thought I would and got between 21-27%, including repeating four whole sentences. There were about 30 though, and most of them I couldn’t hear. I had this test a few months ago and couldn’t hear any of them, and then Mum said, “I bet if I say, do you want a chocolate muffin? She’ll hear that.” And I did! I told Terry this and he said if I get 15% more in my next test in eight week’s time, he’ll get me a chocolate muffin! I now have something to aim for - which is getting 42%...and the muffin! We also talked about the brainstem implant, which I qualify for as my hearing is so bad, but we’ve been told that it’s not a decision to go into lightly though, so I still need to have more appointments about it. I would have to teach my brain what sounds are again, and that could take up to two years. I’m a fast learner though, so hopefully it wouldn’t be that long!

Thank you to Ali and Candypops for donating on my Justgiving page this week.

Sorry for being a bit miserable this entry, but it’s just the way it goes sometimes.

Love Nicole xxx