Birthday!

I've been busy with exams and revision so have only just around to blogging about my birthday!

Well for those of you who didn't know, my birthday was on Saturday 18th May and I turnt 17! I didn't get to see mum or dad because they were out as dad was completing Great Strides 65 with his team. Abbi was here when I woke up in the morning, so she took me for a McDonald's Breakfast before she went to work at 11am. George was working all day so I didn't get to see her either. After my McDonald's, I opened my presents and cards. Mum and dad had got me Nike Airmax, some clothes, my driving provisional licence, my learner insurance for the car and obviously the car :)!

In the afternoon, I met Jenny in town who took me for a Nandos which was lovely! We then did a bit of shopping and came back to my house.

 

    

                               

Then in the evening I had a little gathering with my friends over; Jenny, Alice, Max, Greg, Tom, Jack, Josh, Wade and Jay.

I had booked the next day off of work, so I just chilled all day. Then on the Monday, I had my first driving lesson! Since then, I have had a further 3 lessons and mum has taken me out in my car everyday. I can't wait to be able to drive on my own now!

The following Friday (the 25th) I had a party to celebrate my birthday again with my friends and mum and dad were there this time. It was a really great night and I think everyone was feeling it the next day ;)...

 

            

Hospital Appointment & Great Strides 65

It's been a while since I actually blogged about my health since my downfall back in March!! Since then, over April, I've been on a course of Ciprofloxacin, Itraconozole and Prednisolone. Although, that didn't really help out with my cough!

Last Tuesday, I had another hospital appointment for my monthly check up. I saw Dr. Ho who I told I had been waking up most nights coughing, so he suggested I try nebulised Bramitob which is similar to IV Tobramycin but a nebulised form. So I will be on that for one month instead of my Promxin and then back on the Promixin for a month so I alternate it.

As I couldn't remember if I had had Bramitob in the past, I had to have a test dose to see if I had any reactions.

Jo, the physiotherapist, sorted out my test dose which took me about 15 minutes to nebulise as the hospital don't have INEBs so you have to inhale it from the oxygen on the wall. Luckily I didn't have any reactions to it so Dr. Ho prescribed me on it.

I'm currently waiting for the new mouthpiece and equipment to put on my INEB so that I can do the Bramitob in as they have different pieces which work differently according to which medication you are nebulising. So until then I will carry on with the Promixin.

Aswell as, I'm not sure if I mentioned it in previous posts, but my dad and his work colleagues took part in the Great Strides 65 challenge on Saturday where they walked 65 kilometres (40.5 miles) all in aid of the Cystic Fibrosis Trust. They managed to raise an amazing grand total of £2,841!!! Well done to team MPS (Mail Publisher Solutions) you did great!

Here are some photographs of the walk and the local Basingstoke newspaper that me and dad were in!

 

 

       

My Starlight Wish- Meeting Tinie Tempah

For those of you who know me well enough, will know I'm Tinie Tempah's biggest fan! Back in 2012 Shona sent off some forms to Starlight Children's Foundation to apply for me to have a wish. "Starlight brightens the lives of seriously ill and terminally ill children by wish granting and also by providing fun, entertainment, laughter and distraction for children in every children's hospital ward and hospice throughout the United Kingdom." When Starlight got back to us, I had to the chance to send off a list of my top three wishes and Starlight would see what they could do to make one of those wishes come true. So ofcourse I wished to meet my idol; Tinie Tempah.

Victoria, a wish granter, got back to us soon after saying that she had recieved my wish list but it could take some time to grant as celebrity wishes are difficult where the celebs are so busy. But I was willing to wait! So many months have passed since then as it was back in around January last year.

I was saying to mum around the end of April that it had been such a long time since we sent off my wish list. The same week, we had a phonecall from Victoria saying Tinie had agreed to go ahead with meeting me! How weird considering we had just been speaking about it less than a week before we recieved the phonecall. The following Friday mum had another phonecalll and email from Victoria saying that I would be meeting Tinie on the 8th of May in a hotel in London. Just two weeks after the phonecall. HOW EXCITING!!!

Over the two weeks mum and Victoria spoke about what else I would want to do on the day so Victoria said she would arrange a limo to come and pick the five of us up (Me, Mum, Dad, Abbi and George) and then I chose to go to the Rain Forest Cafe after meeting Tinie which Starlight also payed for.

I was counting down the days to meet Tinie everyday as it got closer because I was so excited. I was also scared and nervous about what I'd actually speak to Tinie about and at the fact I was actually going to be meeting him!

The day arrived...

Darren, the limo driver, arrived with the limo at around 11:40am which was a silver Chrysler. He drove us up to London although, we had no idea which hotel we were going to so it was all a surprise! We had the music blaring and the windows down, so when we went through London all the tourists were taking photo's of us. George was waving at everyone and posing for all the photos. We felt famous!

We arrived at the Millennium Hotel in Grosvenor Square where Darren told us this is where we would be meeting Tinie!! When we went inside, people from Rays Of Sunshine wish granting charity were there who sat me down and explained that the day was already organised for Tinie to come here and meet two other children so they got in touch with Victoria and asked if anyone from Starlight had wished to meet Tinie which of course was me! Victoria then arrived at the hotel aswell who sat down in the waiting room with us. Tinie wasn't due to arrive until 2pm and I would be meeting him around half past so in the mean time, I made a list of questions I would like to ask Tinie so that I knew what to say incase I forgot where I was so excited when I actually saw him. The Rays Of Sunshine staff asked me to stay in the waiting area incase I was to see Tinie when he first arrived. So I did what they said but I could see right out into the hotel entrance anyway so saw Tinie arrive. When I saw his arrival I had the biggest grin on my face and was so excited to meet him!!!

2:30pm arrived and I was taking up to a hallway area outside a room where I would be meeting Tinie after he had finished his first meeting. I could hear him talking and suddenly felt sooo nervous!! I then watched the other girl leave and they told me it was my turn. I just looked at mum and said "I'm so scared" they all laughed and told me to go in. So nervously, I walked through the door...

And there was my idol; Tinie Tempah! He said "Come here, give us a hug" and hugged me straight away. Oh my god it was the best hug I've ever recieved!

I then went to sit on the single seat sofa and he said "No, come and sit next to me". I was honestly so nervous I didn't know what to do. Tinie was just laughing at me haha. I had my leopard print Nike Blazers on which I had seen on his blog months ago so had to buy them which he told me he loved!

 

I began asking my questions straight away as the Rays of Sunshine staff had warned me I would only be with Tinie for 15 minutes. Which when they told me I was a little disappointed with but 15 minutes was enough to make my dream of meeting him come true. I asked him things such as, when his new album-Demonstration would be out and who would be featuring on it. When I asked him that he told me it was top secret and he had only told one other person so I had to promise not to tell anyone. But let me tell you now it sounds AMAZING and the artists featuring on it is insane!

   - His face when telling me how 'sick'

        one of the songs on the new album is!

I also asked when the new single would be out which I'm allowed to tell people. Its called Trampoline and will be out on the 29th May. I asked when he would next be touring and he told me he hasn't got any dates planned yet but will be doing some festivals this year but can't tell me which ones as they are unannounced. He did give me a clue though, a very big clue!

Mum had an amazing idea and told me to ask Tinie so it was worth asking. I asked him if he would record my answer phone message on my phone so when I don't pick up it goes to him. He agreed to do it so now I have possibly the best answer phone ever! The amount of people I have had ringing me just to listen to him! I also asked if he would follow me on Twitter and Instagram which he agreed to and now does, which is amazing!

After all my questions, I got all my things I had brought along for Tinie to sign; his book, Discovery (the album), the O2 concert CD which I was at, a magazine which he was on the front of and my 'Mr Tempah' t-shirt. When I showed him my t-shirt his face was so funny, he had never seen one before and thought it was amazing. He said "I've got to get a photo of this for my Instagram. June take a photo" I was in shock and said "what? I'm actually going on Tinie's Instagram, thats amazing". He wrote a message in the book that I will honestly treasure forever, he said it was so inspiring to meet someone so bubbly and happy like me. 

 

I ended up spending 40 minutes with Tinie and it was honestly the best 40 minutes of my life! If I could do it all again, I would!

After I had met Tinie, Darren came and collected us and dropped us at the Rain forest Cafe, where the five of us had a lovely meal. I didn't get any signal on my phone where the cafe was under ground so couldn't tell anyone about my amazing day just yet. But randomly, my phone picked up a bit of signal and I started getting loads of notifications from Instagram! Next thing I realise Tinie has posted the photo of me and him on his Instagram and its got over 3000 likes and I'm gaining crazy amounts of new followers. I was speechless, not only had I just met my idol, theres now a photo of me and him on his Instagram for his 200k followers to see.

The photo is now on 9814 likes and I have gained 201 followers since then, I may aswell be famous haha!

It was THE BEST DAY OF MY LIFE and if I could do it all again I would. Thank you to Starlight and Rays Of Sunshine for granting my wish and to Tinie Tempah for making me the happiest girl alive that day.

Siany ❤

I didn't want to post this in my last blog post as I want to post this separately. As you will know from reading my other blog posts my cousin Sian passed away due to Cystic Fibrosis back in March 2006 and every year for the anniversary of her passing and her birthday I let off balloons into the sky for her to catch up in heaven and to remind her I'm still down her fighting CF for us both.

Well on Monday, it was the 7th year anniversary since Sian sadly left us. So I did my usual and let off a balloon for her to catch.

R.I.P Siany, I love and miss you always xxx

Last Month... The Longest Blogpost EVER

Wow it's been over a month since I last blogged on here. I have excuses for not being able to blog though so sorry if you just thought I'd given up with my page, as I haven't!

Well the last month has been pretty hectic with my CF and everything!! As you already probably know from reading my other posts (and if you didn't, read them haha), I have been going downhill and getting iller for some time! Well it all hit me a bit too hard over March and I've been feeling rubbish!! I'll start from where everything was all fine :)! I'll warn you now though, this is going to be the longest blogpost ever!

Well my Uncle Mark and now Auntie Jo, got married on Saturday 2nd March in Wivenhoe House, Essex which was a lovely day! Congratulations again Marky and Jo :)! But in the evening after having just one bottle of Magners I started to feel really tired which has been happening to me the past couple of parties I have been to and drunk alcohol. So I stopped drinking and sat down while the disco was happening! Not like me at all! I then started to shiver and felt really cold so went up to the hotel room and went to sleep. I was so cold I went to bed wrapped up in a dressing gown and duvet!! I woke up a few times in the night freezing cold but really sweaty so must have been coming down with a temperature! The next morning I felt really drained and had no energy so slept in the car the whole way home and for the rest of the day when we got back!

Here are some photos of the wedding anyway to try and make my post a little more interesting!






































































After sleeping all day, I then again woke up in the night shivering so I put a dressing gown on and some long socks under my pyjamas to try and keep me warm! I felt so rubbish on the Monday that I didn't go to college and spent mums birthday with her at home ill, sorry mumma!! I had a hospital appointment booked for Tuesday anyway so we just waited on Monday and then I went to my appointment on Tuesday. When Dr. Higton saw me, she admitted me to the ward straight away as she could tell I was really ill! My temperature was sky high, I was having hot and cold fevers and had no energy to even move! Let the boring hospital life begin!

I was started on some Ivs straight away to try and get me better as I honestly was feeling crap! Dr. Higton chose to give me; Tobramycin, Ceftazadime and Teicoplanin. I reaccted to Teicoplanin last time I was on it by having a weird rash appear on my hands and feet, but it wasn't until my two week course of ivs had finished so Dr.Higton said to try it again and see how I am. The evening after having the first dose though I started having the most horrible hot flush ever! I was honestly burning hot that I could feel the heat coming off of me! I was suppose to have another dose of Teichoplanin that evening aswell, but Brenda, the nurse, said she wasn't going to give it to me in case I got really worse. So we waited until the morning for the doctors round.

The doctors came round about 11:30am after I had, had some breakfast and was awake. They said to stop the Teicoplanin for 24 hours and carry on with the other Ivs and also some IV Paracetamol to try and keep my temperature down. After that I had my lunch but struggled to eat it as I started to feel sick... Great :(! I must have been sick about twice after that so I didn't want to eat anything. Then around 2pm I started to feel really drained again with no energy, so I went back to sleep. Mum turnt up about 4pm but I didn't even have any energy to speak to her so slept until 6pm when the Teicoplanin was due again. Brenda gave me the Teichoplanin but after that I started to feel really hot again!! Mum ran me a cold bath to see if that would help me cool down but I felt even worse after having it so just went straight back to sleep! I woke up in the night still feeling really sick though so the nurses gave me some anti sickness IV (which I have forgotten the name of, woops) but it didn't seem to help and I still felt nauseous.

Thursday, the doctors came back and said to stop the Teicoplanin again and control my temperature to see if it actually is the Teichoplanin that is making me have hot flushes. Throughout the day though, my temperature was going as high as 40, so it obviously wasn't the Teichoplanin! Some blood tests were done, by mum ofcourse, to test all these different things to find out what was wrong with me! I was tested for Glandular Fever, Mumps, Liver functions and lots of other things yet I'm rubbish at remembering what they were! There were lots of blood bottles though! I was having Anti-Sickness 6 hourly to try and stop me being sick as every thing I even drank was coming straight back up! This time I was given a different anti-sickness drug called Ondansetron which seemed to work so much better! I managed to eat some spaghetti and crisps because I wasn't feeling sick anymore. I still had no energy though so went back to sleep at about 4, I felt like an old granny going for regular naps haha! Dad came to see me again after work, and he took me to McDonald's as he knew it was something I would actually eat! But when I started eating my chicken nuggets I started feeling sick again so struggled to eat them all! We then went for a drive around Frimley and looked at dads old house and where he used to do his paper rounds as a kid. Then it was back to the hospital for my Ceftazadime IV. Once again, I was sick in the night though, so that was my chicken nuggets back up!

Friday it was doctors round again, but Dr. Hoe was back in today so he came and saw me. He said to stop the Ivs altogether as it may be them that are making me feel this rubbish, as I felt worse from when I first came in on Tuesday. So they were stopped and I was just on IV Paracetamol and Anti-Sickness. The blood results had come back and unfortunately all showed up negative so I didn't have Glandular Fever which everyone was certain I did have! The liver function blood results were high though, so Dr. Ho said to stop taking my Itraconozole tablet. He also said that he wanted some Blood Cultures done so they were to be done to see if they grew anything. A Blood Culture is a culture of blood which detects any infection growing in the bloodstream. I only let mum take my blood as it has taken years to let anyone take blood out of my arm and I don't trust anyone as people always miss. So as mum always gets it every time, first time, I only let her take it. However, she doesn't know how to do a Blood Culture so I had to let Nic the nurse do it. However, once Nic had got the needle in my arm, it wouldn't bleed back so she had to take it out. So mum tried and of course got it to bleed! So Nic attached the blood culture bottles to take my blood which all went fine! They take quite a few days to get the results back though, as they have to see if the blood cultures any infection.

Friday evening, dad came in again like usual and I was suddenly feeling really hungry! Probably because my stomach was empty after not eating all week! I was weighed Friday morning and had lost 2kg since Tuesday so some food would be good! I ordered myself a Dominoes pizza and potatoes wedges to my hospital bed. Although, they rang as they couldn't find my unit in the hospital haha! Dad had to go and find them! I ate most of my pizza and saved the rest for lunch on Saturday. And guess what... I wasn't sick! Yay!

Getting bored of my blogpost yet? I've still got loads more to type... YAWN.

Saturday I wasn't feeling so ill, finally I was getting better! I even managed to keep the eating up! Oh wait.. Until about 6pm I was really tired once again :(! Me, mum and dad went out for a Harvester but I was nealy falling asleep trying to eat my chicken! So after that it was back to hospital and back to sleep! You're probably thinking, McDonald's, Dominoes and The Harvester in 3 days, but anything to make me eat!!

Sunday I was feeling the best I had felt so the nurses let me go home for the afternoon and evening! I had a bath when I got home but after that I felt rubbish again so it was back to bed then back to hospital in the evening! Just when I thought the doctors might think about discharging me!


Monday I was feeling so ill again it was like I had just gone in a circle of getting better to rubbish again! I'll try and tell you in quick now the rest of my admission as I'm getting pretty bored typing this so I imagine you're on the verge of giving up reading this if you haven't already!



Tuesday I was really fed up and just wanted a night at home, so Brenda let me go for the night as I wasn't on any Ivs so mum could look after me easily and if I needed anything just drive back down the M3 and bring me back. However, just before we left I yawned and mum said "hang on a minute open your mouth again" so I did and she said "You've got Tonsillitis!". Finally, it took long enough to find out what was wrong with me!! Brenda let us go home anyway and just said to be back early in the morning to see the ENT doctors (Ear, Nose, Throat specialist). It was so good to finally sleep in my own bed!

On Wednesday morning we came back early for the doctors round and to see the ENT doctors to find out what would happen now that I had Tonsillitis. When mum brought me back to the hospital I was really tired again so went back to bed. Shortly after, the ENT doctors came in and looked at my throat and agreed that I had Tonsillitis. They couldn't really do a lot though as their main specialist doctor was away until Friday.

Skipping Thursday as nothing interesting really happened that day, except I was feeling better finally! No sickness and no tiredness! Yay!

Friday morning was rather exciting!! Mum turned up to the hospital with our brand new pink Fiat 500! I was so excited!! I have named her Fi-Fi and she even has personalised plates that say 'Miss NRJ'! I cannot wait to start learning now!














Anyway back to the hospital situation, the main ENT doctor came round and looked at my throat and felt my glands. He was almost certain that I had Glandular Fever so said he wanted more blood tests done. So more blood tests were done to test for Glandular fever and he also prescribed me with some throat spray and Penicillin antibiotics to try and clear the Tonsillitis as soon as possible!

 

I then saw Dr. Ho on the normal doctors round and persuaded him to let me home after 10 days!! Firstly, he said he wanted to put me on some different Ivs to get my lung function back up and shift the Tonsillitis quicker but I said I just wanted to see how I go with the Penicillin. Then he said that was fine but he wanted me to stay in until Monday. But there was no way I was staying in which is what I told him so he let me home haha!

I was feeling better now that I was at home but was still not 100%! I was still getting tired really easily, so just took it easy and had lots of granny naps!

I had to go back on Tuesday for an appointment to see how the Tonsillitis was after a few days of being on Penicillin and what the blood results came back as. So dad took me up there in the morning. I did my lung function first which was a big shocker... It had improved by loads and was the best it has ever been since being at Frimley for nearly a year at 2.21 litres! Get in!! I then saw Dr.Ho who was really impressed at the lung function and was glad to see that the Tonsillitis was getting better. He then went and checked the blood results which showed borderline Glandular Fever which meant it is developing slowly in my anti-bodies which isn't good! So he prescribed me with the Penicillin for another 2 weeks and I've got to go back on the 9th April to see if the Glandular Fever has developed any more.

Well since then I've been back to college and work and getting back into my normal routine. But I do get tired really easily so am still going for granny naps now and again, but that's because of the Glandular Fever. Just as I was getting back into the normal routine it's the Easter holidays! So it's back to being lazy for me haha! And partying of course!! I am off to one tonight but have go to take it easy as I don't want to get really ill again!!  

If you've survived reading this until the end I'm glad I didn't bore you too much and thanks for reading I guess :D!

Happy Easter x