Part 24 - Me n my bonce

My first night in rehab, my aunt and uncle came to visit too! Mum had finished unpacking into my mini wardrobe and draws for me next to my bed and her and dad went for a "cheeky coffee". A nurse came and asked if I minded if someone played music as it was his last night! Thinking they meant through a tannoy system I agreed, 2 minutes later my bum holding sedgeway was there I was being taken to the day room to listen to his music, much to my aunt and uncles delight they were also coming! I arrived into the day room were his crowd were gathering. He played the guitar, I was waiting for him to chuck a tonsil or two but afterwards he explained that due to tubes he'd had down his throat he was unable to sing just yet! Was actually quite sad for him after that as he was really very good and could tell he was passionate about it! After the 2 minute performance I was wheeled back to my room. My aunt and uncle left and dad pulled my curtain round so mum could help me get ready for bed. Dad had figured out my bedside TV and phone so i was able to get my soap fix! (the amount we'd spent on bedside TV's now I think I could have bought a couple of plasma's!) There were 3 other ladies in my ward, 1 of which I still hadn't seen as she had her curtain pulled unfortunately I could still hear her though!!!! Another lady who was very nice and reminded me in a strange way of my nan she had suffered a bad case of flu and was left with Gillian Barre syndrome, very painful and unable to stand, and another lady opposite me very sweet and ended up taking quite a shine to my zimmer frame even though she had her own one which I must say gave me zimmer envy as hers had brakes too! She had also convinced herself I had triplets, that she asked me how they were every morning! Fortunately I was tipped off to agree with what she said as she would get very distressed if you didn't!
My first few days was pretty much filled with assessments, showing physio's, OT's, doctors and nurses what I could do, them seeing what I could do and I presume judge just what I needed doing help wise! I met my doctor who was about 7 foot tall, he was going to be my main contact for everything, after a little chat he told me he was off to Kinnier Wilson at the beginning of December, slightly worried I asked him what would happen to me when he goes, very nonchalantly he said well we will probably both be leaving at the same time! Woo hoo! He thought I would be out of here by then! I was initially told it was a 3 month programme! I was very surprised as I also found out my coordination was shocking now too, I couldn't grab my thumb with my other hand when above my head, but I could when looking at it! Most other tests I had mastered I think purely for the amount of times I had had them! Sliding my heel up and down my shin, touching my nose then the doctors finger, getting faster and moving their finger! Lifting my leg whilst laying down, lifting my arms, how far could I turn my neck! I became a performing monkey knowing what they would ask me to do next! On the Friday I was given a timetable, it was like being at school, what lessons did I have and when, when was my free periods?!

Part 23 - Me n my bonce

So the day I had been longing for for what seemed like months I was going to rehab! (And yes I did hum the song lots!!!) I was told transport was coming for me at 11am so mum was coming in armed with cards, sweets and biscuits I'd asked her to get each ward of nurses that had looked after me, she was geting here for 10am with clothes for me too! Woo hoo! It was also shower day (Wednesday) so OT's had come a little earlier to make sure I was a clean girl! I even managed to blowdry my barnet by myself too! Even if it was a big frizzy mess, is this really what we all walked about like before GHD's?! Wow! Anyways I was sat there waiting when I had a visit from someone (staff) who threaded my eyebrows for me! I really must have mentioned them a lot! Haha! I felt like a new woman and lost about a stone in hair weight! I was sitting waiting for my time, could not see my tv so did not know what time it was but felt time was going on, my OT was still floating about the ward and she popped her head in, she could tell I was getting agitated and asked if I wanted her to call my mum as I still didn't have my mobile with me, she called her and she was stuck in traffic as dad was dropping her in as so much to carry! 10:45 mum arrived it was like challenge Aneka to get me dressed, write cards and tags on gift bags! Then get in my wheelchair to deliver to everyone! It was lovely to go back in HDU, as I did as everyone was so pleased to see my progress, it was also nice to speak to them in my real voice and say thank you too! Then the nurses station of Kinnier Wilson ward, the ward that had been home to me for 68 days!!!! It was a sad but a happy goodbye as this was the next step to getting Dan back! Me and mum got emotional but whizzed round in my wheels and was back in my room, packed and waiting to go by 11:05am. No transport, eventually mum went to get a cheeky coffee and sandwich as my lunch was delivered. We ate our lunch and still no transport had arrived! What else could we do but play one last game of UNO of course! My transport arrived for me at 1pm, to my dismay with a stretcher bed! This was how I was taken to rehab on the bed, loaded into the van thing I wasn't the only one being taken anywhere! We had to wait for 2 more patients! They finally came, the transport guys were lovely really chatty and friendly. I even had a marriage proposal from the other patient on behalf of her son! Deep down I knew it was the eyebrows that did it! I made my apologies and explained how I couldn't marry her son and move to Nigeria as it was way too hot for me there and we carried on our journey, laughing as we went! Typically I was the last drop off! At one stop the driver and assistant had to carry someone up the stairs they left the door open and a child with no shoes and a bicycle appeared! No hallucination this was real! I finally arrived at my new residence Frank Cooksey Neuro Rehab. Although the transport guys were unsure where to take me, one ward they were told to put me in was like gods waiting room, I think the average age was 90, luckily mum said my name as the nurses didnt check, no wrong ward! Phew! I finally arrived to the ward, desperate for a wee now too! As I hadn't been assessed they wanted me to use a bed pan I point blank refused I wanted to use a proper toilet like I had been at Kings, they disappeared and came back with only what I can describe as a sedgeway with a bum holder! Similar to the rotar stand I held on and pulled myself up, the bum holders put down and I perched on these, was wheeled to the toilet, where I was allowed to have my wee in peace! Then pull the orange chord to be collected! I felt like the episode of Friends where Joey and Chandler arrived in Monica and Rachel's for the flat swap on the weird dog on wheels statue! Dan had arrived!

Part 22 - Me n my bonce

No tubes out my neck or nose now also meant I could see my niece and nephew who i still hadn't seen since my nephews birthday on 4th June! They were coming to see me at the weekend! The next few days I went from strength to strength! Such a boost finally having that damn tube out of my throat! Also knowing I was going to see 2 little people who meant the world to me! I got stronger and stronger at physio, walking out of my room and part way down the corridor, nurses would be so encouraging and have big smiles to see me and my zimmer frame coming down the corridor! Excited to see mum and dad and tell them just what I had done that day was a great feeling! I was still having trouble with my catheta it kept backing up and getting blocked! It was changed yet again and I also had a flip valve fitted this time to it to retrain my bladder as I had now had a catheta for over 3.5 months! The valve was ok for about the first 4 hours then just became blocked again, I was given no option the nurses removed it as it was now stressing me out too much, crying each time feeling like I had lost control of my bladder now too! 31 and wetting myself as well as ruining the sexy surgical stockings which there was now a national shortage of! (The shortage wasn't caused by me though!) I was really anxious, would I know if I needed a wee? Would I make it in time? The daytime peeing went great, using a commode in my room and it was left in my room overnight much to the disgust of the hitler cleaner manager that came round everyday! (Hey I suppose I finally had that ensuite!) I still had to be supervised getting to and from the commode and the nurses had to let the side of my bed down so I could actually get out! I managed to make it every time! Yeah me! One night I was awoken thinking I could hear something, well!!! An older fella from down the corridor had got out of his room and was trying to get on my commode (still with his jammies on may I add!) I pressed my bell and fortunately the nurses came apologised and removed him! Phew that was strange but funny looking back now everyone saying no xxxx, xxxx go back to your bed! Apparently he got out of his bed one day and he was asked where he was going? His reply.... To the other side of my bed! Now I know the beds were a little bigger than your average single bed but probably only by a fag paper! A couple of nights later he came and visited me again in the middle of the night just standing over me saying no no no no no like the man from Vicar of Dibley! Again the nurses came to my rescue!
Saturday came and I was so looking forward to seeing my niece and nephew, they were dubious at first staring at the whacking great big plaster on my neck! My nephew didn't say anything just gave me big kisses and cuddles! My niece on the other hand came in gave me kisses and a cuddle and straight away questioned DL (that's what they called me!) why have you got a plaster on your neck? Because I have a sore throat I replied! Well after that my zimmer frame, bed and wheelchair were so much fun it didn't really matter and it was just like we were at home! On the Sunday we had another family meal a KFC! It was nice to eat with mum and dad as we always had dinner together I missed it probably more than eating! Well ok maybe not more than eating but I did miss it! My neck plaster also had to be changed also on this day! And I take my hat off to the nurse that did this and will forever be apologetic to her! A normal plaster being taken off hurt enough, let alone a big square plaster with no pad/non sticky bit on it on the hole created by my tracheostomy! I may have spoke a little loudly with a little tap possibly to the arm of my chair! Wow that hurt!!! She also put my new plaster on for me, I hope that didn't need to be done too frequently I remember thinking!
As i now had no tracheostomy I was now able to go to neuro rehab but I had to wait for a bed! I was visited by Frank Cooksey which was part of King's as well as a private rehab in Blackheath! Frank Cooksey had previously accepted me but was waiting for my trackie to be removed now I had to wait for a bed, Blackheath were having a meeting the following day to see whether they would accept me. Days came and went and still no news! During an UNO session with mum and dad the sister of Kinnier Wilson came in and broke the news Frank Cooksey has a bed, scariest news - your going tomorrow!

Part 21 - Me n my bonce

Mum, dad and my other visitors quickly became pro lip readers again! Although it was frustrating when they didn't understand what I was saying! I used to say don't worry if they didn't and look the other way so they didn't see the worry or how upset I was if they asked me to repeat! Friday was ENT day and we was told its not definite you are on the list to be seen or going to be seen so don't hassle your mum to come up! Hassle her or not she was coming regardless, you try messing with her after her baby (in her eyes) has been to hell and back! Friday came my mute self and mum tried to carry on as normal but I was really agitated about what was going to happen! ENT arrived (so much for not being on the list!) and the dreaded briefcase with endoscopy!!!! Yes more camera intrusion! Camera down my nose again (strangely didnt hurt this time!) then in my tracheostomy, no swelling! The consultant was also baffled by my muteness and what had caused this! The speech therapists and ENT were all chatting a bit really like I wasn't there! Why don't we just try it I remember hearing! Oh dear lord what am I just trying??? They turned to me and said we think you're ready to have the tracheostomy out so we will try it if not we will put another one straight in! Mixed emotions of hope, worry, excitement and being absolutely petrified were going through my mind! What if they took it out it didn't work and they couldn't get the new one back in? To be honest I didn't have an awful long time to think about which was probably a good thing! But hang on where was all the equipment the other nurses had when it was changed before? Neck tie snipped OMG this was really happening! Mum held my hand, out came the tracheostomy the speech therapist put her finger over the hole "oh my that's so much better" I said! Tears from me, tears from mum, one very relieved ENT and happy speech therapists! They suctioned me then passed me back the yankeur (now with blood on) I nearly passed out as not great with claret or any other bodily fluids to be honest! I asked someone to take it from me which they smiled and did! Also my physio was in the room and he put the over sized massive plaster over the stoma site (trackie hole) then doubled it up with a foam flesh coloured cup coaster plaster! Right Danielle we will finish our rounds then came back to see you to make sure everything is ok! I never felt such relief! Even if I did now have to hold my neck to cough as the plaster made a farting noise where some air would escape! Tears of joys between me and mum and she passed my phone, I dialled dads number at first the penny didn't drop he thought I was mum! When he did I just burst into tears and I had to pass my phone to mum not wanting to blow me plaster off! 27th September 2013 you was a very good day indeed!!!

Part 20 - Me n my bonce

So now I trunkless and now eating and drinking! Still just the one thing holding me back - my tracheostomy! Just when and how would this be coming out! I felt like I needed a date to work towards! This tracheotomy  was pretty much coming to the end of its life so I needed it to be changed as they only last so long! More panic and worry! Will this mean more surgery? Anaesthetic? Will there be a hand to hold? I was told when it would be happening and mum and dad both made sure they were there that day! A doctor, an anaesthetist, a nurse in blue scrubs and a nurse in red (red to me is danger so made me panic more!) arrived in my room with equipment! Lots of equipment it looked scary! More stickers over my chest to monitor me, oxygen measurer thing on my finger and laid me flat with a towel rolled up under my neck to stop me mec-a-necking and to get better access! Being quite squeamish mum left the room and waited outside my room, dad was with me holding my hand. The doctor carrying out the procedure had possibly the worst bedside manner of everyone I had come across at Kings (maybe minus the one I hallucinated about and kept giving evils too) she didn't explain anything to me, my speaking valve had been removed so I couldn't talk, my dad the only one who knew how I was feeling and could tell I was distressed, held my hand and looked at me and explained to me everything they were doing! The inner tube taken out and a long stick thing in its place, my old trackie was taken out, felt strange in a good way! Then the other one (new one) put in I just remember choking loads, my dad was telling the doctor I needed suctioning and was passing me my yankeur and doing it for me in the end as she seemed a bit stressed! Then I had new foam neck tie put on whilst still coughing my guts up! Phew thank god that was done! Speaking valve popped back on, no no take it off! What's happened? I couldn't breathe out now with the speaking valve on which now also meant I couldn't speak again! Really frustrated and upset now I just cried with my mum and dad, why is all this happening to me? What was causing this? Nurses came and the sister, inflating and deflating the cuff just to make sure but I still couldn't breathe out at all! Maybe it's the swelling? But now I was unable to eat and drink again too as I needed the valve to eat and drink as told by speech and language therapist! I felt like I'd gone back a month and dreaded the thought of having to have another NG tube fitted! I was hooked up to fluids through my pic line as had been nil by mouth since the night before and was getting dehydrated! That night I also had problems with my catheter again, once my nurses had sorted everything it was about midnight and I was shattered, such a long day! I had to wait until tomorrow to reassess what had happened! The next day and still the same thing, I had the doctors and nurses baffled and myself in bits! My speech therapist came to see me and did so e swallow tests which was a success! Thankfully it was still safe to eat and drink though not talk! Because I didn't have my speaking valve on I couldn't clear my throat or chest properly so I needed a lot more regular suctioning! ENT were booked for Friday to come and see me with their camera again! Until then I would be mute again!!!

Part 19 - Me n my bonce

The nutritionist visited me weekly to see how I was progressing, I was told that if I continued the way I was my NG tube could come out! OMG! I'd grown quite accustomed to my trunk and pegging it to my gown (aka Peggy) my drugs crushed and given to me mixed in yoghurt to ensure I could take them orally as awful as it was was just another step to getting better and back to as normal as I was/could be!
2.15pm that Sunday, they're late! Visiting started 15 minutes ago! Then the familiar squeak of mums shoe, here comes pizza! So out I get in my chair with mum now as I can use zimmer frame, dad was parking the car! For the first time in ages me, mum and dad had our first meal together! Pizza never tasted so good! Oh my goodness no stamina I couldn't finish the smallest of pizzas, my stomach had shrunk which wasn't a bad thing I suppose! Then a gurgle and an 'episode' luckily by now mum and dad had the getting and setting up of a commode and helping me to transfer off to a t and within minutes I was where I needed to be! A whole day of UNO playing, finally we found a game dad couldn't cheat at too! My catheta had also now started to play up it had been changed once when i was in HDU as was hurting and I think it was changed about 4-5 times whilst in Kinnier Wilson, each time I had a dose of antibiotics to prevent infection but it also made me very sore! Needless to say I got a urine infection in the end! The medicine that I was given for that made me pee like an alien (not that I've seen alien pee of course! Even whilst on my spaceship!) illuminous yellow! I thought something else had gone belly up with me before one of my nurses explained it was the drugs! Phew! Plenty of fluids and it returned to normal eventually! I continued to take the crushed up drugs in yoghurt or dissolvable form and the nutritionist agreed I could have it taken out! Yeah, woo-hoo! Then apprehension, how do they take this out, is it another operation? No we just pull it out! So like Paul Daniels doing a magic trick after the t shaped plaster was off, pull pull pull and a big last pull my trunk had gone! As it was coming out it made me feel like I needed to sneeze, feel sick, cough but was literally only seconds and it was gone! Mum had nipped down to get coffees (code for gone for a fag) while this happened so was quite a surprise when she came back in! Today was also the first time I had seen myself too, in my camera on my phone I took a picture before the NG was taken out then again after! My god, my hair, my eyebrows! I looked a lot worse than I expected, not sure what I thought I would look like! People kept saying my hair had really grown, well if it had really grown then they certainly had bic'd it for the drain I looked like a parrot! But I'm sure I could do something with it! Every time I had a visitor after that day it was like a party trick of mine to wiggle my nose and smile - ta da! Sounds like such a small thing now but felt like a huge hurdle at the time! Still to this day I haven't seen a picture or reflection of me with my tracheostomy in or my wounds on my head, the day will come I'm sure just not yet!

Part 18 - Me n my bonce

So the eating fork mashable foods was going well I was now allowed to finish the whole portion! The menu at Kings was fab although sometimes ordering mac n cheese I got lamb casserole! Who cares it tasted good! Followed by a banana or rice pudding! Yum! But it was still no dominoes! Getting stronger with my physio's each day At the gym in the parallel bars I stepped together stepped, and again and again! I was walking! All be it I looked like I had a watermelon between my knees I was walking! And backwards steps to my chair! I was now also completing my transfers using a zimmer frame, a step up from the rotar stand! Gradually also using this with my nurses too! I had to make sure the foot part of my sexy stockings were rolled up being barefoot so I didn't slide along the floor, this only happened once I learnt quick! I still had my catheta so fortunately I only had to use the zimmer for transfers not sure i could do much more yet! Physio's seemed to come a bit more frequently one day he put my wheelchair at the door of my room, "fancy a walk there", my reply quite simply was a laugh and "you're joking right" nope he was deadly serious! With my gown doubled up to stop me doing a Frankie Howard and showing my bum and my wee bag hooked on my zimmer I stood, stepped slowly while pushing turned and sat in my wheelchair! I did it! Such an achievement! Off to the gym I went pleased as punch I had walked to my chair! Each time I went to the gym and each time it got harder and more intense! Boxing gloves? What the.... Ok I slipped them on, obviously I was no Frank Bruno but I had a good go after all i was only sitting and punching! Each time they made it a bit harder sitting on a wobbly board whilst doing it then 1 foot on the wobbly board, then the other! I would get tired very quickly and my Elvis legs would reappear a signal to sit! After resting my physio's asked if I would like to try and walk without my frame and with just those beside me! Did I! Course I did! They wheeled me in my chair to one end of the gym, I stood, held there hands and off I walked with them, nearly the whole length of the gym! Mum followed with my chair in case I got tired but I made it quick sit down then walked back too again holding on! My dad hasn't seen me in the gym yet so had arranged for him to come to a session. He had downloaded a song onto his phone and walked behind me when I was walking with the physio's eye of the tiger was playing! But I was far from being Rocky! This was just the type of thing that would lift my spirit as well as seeing other family visitors and my diamonds coming in and noting my shopping list from Vegas! I can't beat em or join em so they did it for me! Also bring in what every girl needs cake and chocolate cake at that! I seemed to now have a gelatin allergy so had to be really careful what I ate and drunk to ensure I stayed away from it! As long as it was marked with the vegetarian sign and wasn't nailed down I was eating and drinking it! And by now I had also progressed to real food, lumps an all! Every day I'd order custard for dessert no matter what the main meal was and mum would put in a piece of chocolate cake or slice up a banana in it for afters! Yum! My dominoes was now achievable and an order was now placed with mum and dad and coming Sunday! I'd looked on the Internet on menus I could see nowhere it said it contained gelatin! Get in!!!!

Part 17 - Me n my bonce

As much as I loved shower days it wiped me out completely! And the thought of my foam neck tie being changed as it used to make me cough so much should have been enough to put me off but nope I loved them showers! Sometimes on shower days when mum arrived at visiting time I'd be spark out as it used to be a long strenuous session for me. But then as soon as I knew she was there she'd sheet up my chair and put a pooh sheet down ready for our daily UNO fix. Wait for my nurse to rotar stand me out to my chair, until one day my chair wasn't there! I remember someone coming into my room at night and taking it out to borrow as it reclined so someone could sleep in it whose family member was poorly overnight! What would I sit on now? A normal big hospital chair was given to me but was a lot firmer than my 'special' chair was, I had to sit on pillows with pillows under my feet as I was too short, even then I could only do a couple of hours in it, what a set back! My dad walked around the ward and found the chair but it was in a room with infection control so could not be removed without being cleaned. When my physio's found out they wasn't particularly happy and went and got my chair back and cleaned it, it wasn't removed from my room again from that day! Little things like this could really change my mood and make me quite down, looking back now it was only a chair sort it out woman!!! Speech and language came back to see me to try the cap again, 10 whole minutes I managed! Only another 23 hours 50 minutes and the tracheostomy could safely come out! I was starting to think this was becoming a permanent thing! But the talks of going to a neuro rehab centre no one would take trackie patients, well all except Putney, the other side of London! I was asked several times about going there but I declined due to the fact it was so awkward for visitors to get too, not seeing them daily would surely set me back and would not be fair to expect them to come up daily there as it would be at least 2 hours either way! I was told ENT would be coming back to see me again and was worried about having another endoscopy, mum was allowed to come in and be with me during this which meant her spending the whole day with me from 9.30am until 8pm although dreading the camera I was secretly pleased she would get to spend the whole day with me! Apprehensive as no time given when they would be coming all we knew was I was booked in and will be seen, better than the day mum arrived for a swallow test and was told as she walked through the door it had been cancelled even I was told an hour and a bit before hand! For me this just meant a full day with mum and a whole lot of UNO playing! So ENT came and went still too swollen to see, give it time for the swelling to reduce, again not knowing how long this would be was unsettling! It seemed no one knew what to do with me and my swollen airways and secretions! We called a family meeting with Mr Chandler, he was fantastic! All of a sudden things started to move, ENT came back I was put on a 2 week course of steroids, I had swallow test and now I was allowed yoghurt! Not exactly a crunch corner but muller light yoghurt, strawberry, toffee or peach! Yoghurt never tasted so good, but not the whole one (they were the small ones too!) 5 spoonfuls at first to see how I got on, once a day! They were going fine so increased to a whole yoghurt and then 3 per day! I'm not sure why but as soon as I was allowed these I didn't want them! Mum and Dad really had to fight to convince me to have them, then once I did I felt sick again, vicious circle! Mr Chandler said that if ENT were inconclusive again the next time I would have to go to Guys hospital as a day case as there were no ENT specialists at Kings to have further tests. I didn't want to go Guys, I didn't want to lose my place here at Kinnier Wilson! A little while later (I have no concept of how much longer after sorry!) I was booked for a fees test! Woo hoo, fluid and food even though it was covered in barium liquid, I would actually chew! I was wheeled down to X-ray after my shower day as it was a Wednesday and waited (mum again came in early and came with me) there seemed to be lots of people in there about 5 people behind the screen watching the tv things and the feeder lady that gave me stuff to eat and drink, I moved to the special chair after the parlava of no rotar stand or zimmer frame my speech therapist had to go and get one! Just red emergency bag at the ready, feeder gave me just barium fluid, swallowed fine, crushed up banana with barium - swallowed fine (even though it did taste a bit minging with barium I was chewing and swallowing! Check me out! Then a piece of digestive biscuit again dipped in barium by the feeder, not nicest but at the same time the best digestive biscuit I had ever had! They gave me the thumbs up, I could now eat mashed up food! Not a full portion mind but I could eat stuff and drink, better than just the 3 now boring flavours of strawberry, peach and toffee! When I got back to the room I had 2 cups of apple juice and a cup of tea! Although the tea was pants, rang dad to bring tea bags and ribena juice, scary in case I choked but also exciting! My NG feeding tube was reduced to ensure I wasn't OD'ing on calories! I'd lost 3 stone 7 pound by now, bit of a drastic way to lose weight though think I'll stick to weight watchers in future!

Part 16 - Me n my bonce

Not sure who was more excited me or the physio's? We are going to start taking you to the gym can you get trainers brought in for you? A big hell yeah!!! Although I still had no phone with me I had to wait for mum to arrive that day to call dad to tell him to nip home and bring a pair of my trainers in on his way up! The gym I thought! Wow I hope it's no boxercise or bums, tums n thighs class especially as getting off of my air bed mattress and standing was hard enough! Occupational therapists (OT's) also took me to the gym sometimes for their sessions, balancing at the plinths and throwing a ball through a hoop in the end! How'd I initially get to the gym?? In my bed of course! Like a G! I was wheeled along the corridor with my NG tube blocked off and pegged by a clothes peg to my sexy gown! What a catch I must've looked! No yankeur when I went to the gym though, which I panicked about as thinking back i was pretty addicted to this by now, but the big red emergency trackie bag always came wherever I went so no worries there! Even though I had no idea what was in there they checked it weekly so must have been ok and fortunately I never got to find out what was in there! Standing and sitting aka transfers were even more awkward as I still had a catheta in. It had already been dropped once when I was in the hoist from a height which had really hurt, now I was worried it would happen again or I'd trip over it! It wasn't long until I was transferring and visiting the gym in my wheelchair, progressing to the parallel bars in the gym too, no not training for Rio 2016 but standing by myself and holding on to bars beside me, desperately wanting to take the plunge and walk I couldn't it was as if my feet had been superglued to the floor. My exercises consisted of swaying side to side and transferring my weight from 1 leg to the other, dizziness used to come and go and I would have to sit down again, my legs would do it's very own Elvis impression when I got tired too and start to shake. Once the glue was removed from my feet the next challenge was to move my leg forward as if to take a step but not, just get used to swinging it through, like a ballerina pointing, minus the ballerina grace may I add! About 5 on each leg was all I could manage before needing to sit. Mum used to come to the gym with me too watching my progress and would always praise me or if I had to sit down I'd look at her as if to say how was that? She'd smile as always and just give me the thumbs up! This encouraged me, 5 more I thought. The temptation to try and walk was now unreal so my physios being as encouraging as they were said try it. I did, I took 2 steps while holding onto the bars! Mixed emotions of being scared, proud and then worried - how an earth would I ever be able to walk again? Although happy with what I had achieved it would also make me upset as I would realise now just how much I couldn't do! Back to my room in my wheels, OT's asked me what I would like to do, my first response? I would love a shower and hair wash please, ok they said leave it with us. I had my schedule given to me of what physio and OT sessions I'd have on a weekly basis. Look at that - Wednesday morning was what I was longing for! A shower AND hair wash! I used to hate the mornings as knew the nurses would be in for my daily bed bath, which meant lots of turning, causing me to cough lots, my speaking valve shooting off of my tracheostomy, lots of phlegm, then the sickness feeling would come! Being physically sick on a normal basis used to scare me but with a trackie was worse, what if I couldn't bring it all up and I choked? I suppose 1 bonus of being tube fed there was never carrots! I had quite a lot of sickness shots, 3 and on some bad days 4! Usually mornings, mid afternoon, handover time and sometimes late night. In the end I was given an anti sickness sticker behind my ear, though this didn't seem to work much if at all I was still also having the shots so this was taken off! Wednesday morning came! Shower day!!!! What a nightmare to prepare though, my pic line had to be wrapped in a bandage, then an apron taped to my arm making it waterproof. A commode chair was brought round by OT's, so I'd transfer to that slip off my sexy compression stocking as was wheeled to the showers. I knew my legs were buggered but now attempting to wash my hair was impossible, I couldn't lift my arms either, what? But I suppose not having to lift them for so long the muscles had just locked. Pleased I was in the shower, embarrassed being stark you know what naked in front of the OT girls and now I couldn't wash my own hair! OT's didn't let it bother them and on they would crack and help me, then I'd cough my valve come off and they would grab it for me to put back on so I could carry on with my shower. The reason I was on a commode chair became apparent, obviously I could stand so as it had a hole in it it gave me access to wash the important bits too! Showering sitting down was very weird, but that first shower I felt like leaping down the ward and pirouetting, but no I was just wheeled back to my room on the commode, sexy stockings put back on and my trackie dressing changed! I didn't realise I had a foam strap round my neck tied to the trackie keeping it in my neck, this was obviously soaked and needed changing after my shower which always made me choke and splutter and yep need another sickness shot! One time after a shower my NG tube had started to come out it had numbers on it which I got a bit OCD about 75 was usual one day after the shower it was 40! I held it to ensure it didn't slide anymore and a nurse came to fix it, to fix it I needed to re-swallow while she pushed it back in, awful! Then another t shaped plaster put on my nose to fix it in place, it now read 80 and I was relieved!

Recognise the symptoms!!!!

Chiari inspiration pictures

Part 15 - Me n my bonce

A cuddle from mum and a good talking to, a few tears from her too which she tried to hide from me but I saw! Come on girl pull yourself together you can do this! My purple shirt lady now visiting with an occupational therapist too giving lots more exercises I could do. With or without them there, coins of each denomination pick them up and turn them over, then pick them up in size order one by one and place in a pile, how hard could that be, simples! If only! Turns out my coordination had also nosedived as well as my fine motor skills! I got frustrated doing this exercise it regularly distressed me. So much so at one point I threw the coins and just burst into tears! Why couldnt i do this? Why oh why had this happened to me? But being my pillar of strength again mum just picked them up put them on my hospital table and made me do it again! Then finger and hand exercises with the theraputty which was like a stiff and shiney playdoh! Pull it, stretch it, press it no its not the game bop it! Hiding an elastic band in it making me have to separate it to find it all helped build the strength back in my fingers and hands! Not only doing this, leg and arm raises with weights too a diamond of mine came in to see me with hang on is that kids games??? Yep! She had brought me jenga - not sure I had played this without alcoholic shots involved before? Dipping dolphins - a stick with a dolphins head and the handle controlled its mouth to open and close and you had to make them gobble all the appropriate coloured balls from a dome shaped wonky base, a travel set with ludo, snakes and ladders, draughts and more! Hours of fun! But you know what they were obviously helping as I was getting better with my coordination! Physio's by now had given me a proper chair to sit in on a daily basis which was so much more comfortable than the initial wheelchair they gave me! So on a daily basis I could hear the squeak of my mums shoe coming from down the corridor cor these 18 hours were going quick! She'd put a bedsheet on the chair along with what I called a pooh sheet (no explaining needed there I think) the nurse or healthcare assistant would come along and rotar stand me into the chair (I stood/pulled myself up they turnt me and I sat down again!) and from there we played games! Forgetting where we was and for small moments this made me forget I was ill! Some days I would get tired and need to go back to bed but most days I wanted to stay out so dad could see how well I was doing! Also so he could join in with cards or UNO and just talk about things other than mucus, tracheostomies, brains and physio sessions! I enjoyed these times with them! Dad had now had to go back to work so was working as long as possible days then coming up to see me and along with mum not getting home until about 9.15pm every night! Long days but mum and dad never missed 1 day, not 1 visit they were there through everything! Holding my hands and rubbing my feet! I got more games added to my ever growing collection a squeezy ball from the niece and nephews toy bag to strengthen my hands, clothes pegs, a tennis ball, a pack of playing cards and the game we ended up playing practically everyday - UNO! Playing cards and UNO was also a ploy to get me to write as I had to keep scores! Even though my writing was like a child's I kept on after mum and dad left of night times too, making lists for lists sake! Clothes I wanted to wear, films I wanted to see, names of the family. Slowly my handwriting improved but still to this day it is not what it used to be! One day it will be though I'm determined it will be!

Part 14 - Me n my bonce

So after all that nonsense I continued with daily leg and arm raises, physio was now using a rotar stand! How exciting standing by myself I thought! But bloody hell was it hard work! How can something as simple as standing take so much effort?! So in wheeled the rotar stand.... Surely there is no way that is going to help me or be able to move me! I put my feet (still in sexy surgical stockings) on the plate and held onto the rounded handle bar (looked like the front of an exercise bike well without the bike bit if that makes sense! Or a sack barrow as my mum and dad used to call it!) rocking back and forth 1, 2, 3 up she goes! Wow! I have actually just stood up by myself! No hoist, no strap or machine pulling me! I had done this, me, clever moo! More massages it was obviously working!!! If I keep on like this I may just be able to go to Vegas with my friends as planned in September! Vegas baby!!! The ear, nose and throat (ENT) specialist came to see me along with the speech and language therapists. I wonder what's in the briefcase?! A portable endoscopy! Where was that going, after everything I had been through this worried me, the only time one of those had been near me was about 10 years ago when I needed nasal surgery, my canals were drilled out as they were non existent! But hey that's probably a whole other blog!!!! So because of my previous experience I tensed up as I knew this hurt me before! My speech therapist knew I was worried and tried to calm me down, guess what, I asked for my hand to be held again too! This still didnt stop me panicking and going boss-eyed as he neared closer with the endoscope, watching it go up my nose, just how far is he going his elbow will be up there soon! Not only was he putting this up my nose, he was using the same nose hole as my NG tube! Surely there would not be enough room? The feeling of wanting to sneeze was immense! So much so he had to take it out, he couldn't see what he needed to due to secretions (snot and general gunk) Aha I had a bright idea (well not surprising as I do have a large brain after all!!!) why don't I use my yankeur to suction my nose to clear it? (Sorry but yeah it really was as gross as that!) try it the ENT said so I did, he re-tried the endoscopy but still couldn't get through the gunk! Prognosis - steroids, this should dry them out, we'll see you next week! Really! A whole week before even reassessing me! I cried! No pain I wasn't hurting physically but mentally I was dying! There was no light at the end of the tunnel! All I kept thinking was I can't walk, I can only talk when I have my speaking valve on (it shot off if I coughed too hard!) I have a plastic tube in my neck, shaved bits of head, a tube up my nose, my eyebrows needed waxing, my leg hair was re growing and now excessive snotty mucus not nice stuff and swelling still of my upper airway! Vegas was I write off! Gutted!

Part 13 - Me n my bonce

So as well as physio sessions I also had a lady with a purple shirt come to see now! There were so many different colour uniforms, I suppose at least she didn't have to wear bottletop green trousers like the occupational therapists and some physiotherapists! It reminded me of what a milkman should wear! She came a few times a week, lifting my arms and legs trying to get them working again! Lifting my arms by myself after a few sessions, good she'd say, there's a flicker! A flicker is basically like a little twitch where your muscle would have little mini spaz attack where it was trying to work! Apparently a good sign as meant your muscle was working! Days that she didn't come mum would help me with these as she had watched so knew what we had to do! Again still getting my daily footrubs that nurses were jealous of mum and dad were now massaging my once bulging calves that were now so pathetic trying to build up my muscles again! At least now they were shaved I suppose! Each day seeing if they could still wrap their hands round my calves and each day they got a bit firmer! Now as I had started to move my legs slightly there was no rest, one of my diamonds brought me in weights! Yep only out of HDU a little while and everyone was expecting me to lift weights! Strapped them on to my ankles come on Dan you can do it, the more you do the quicker you will get better! In the end I think that's what kept me motivated! The thought of freedom!!! I was starting to settle into life in Kinnier Wilson everyone was really nice! Until one fateful night....A bank staff nurse came in for handover, she didn't seem to know an awful lot about tracheostomies asking what the emergency bag was for, how do I change the tube she asked the worried looking nurse who was handing over to her! I'm not sure if I was on strong drugs or just in Dan land but I didn't seem to notice! I waved off my mum and dad, see you in 18 hours my usual last line to them, mum asking do you want my phone? That's odd I thought! No I'll be fine plus where would I put it! I couldn't exactly jump up and pop it in a draw! Oh how I wish I kept it!!!! So in a couple of hours I have a normal choking fit my inner tube needs to be changed, I kind of knew that feeling by now, I rang my bell, nothing! Thankfully I had my trusty yankeur and had managed to cough a lot of gunk up without her going in for a deep suction but I still needed it! She finally arrived n I managed to say and sign for suction (basically looking like I had an invisible toothbrush!) very flustered and with help from me pointing she managed to suction me, phew! Do I really want to ask her to change my tube - not really but it needed doing! I think she thought she had to take the whole thing out but fortunately I had my speaking valve on I manage to tell her to twist the inner tube and rinse it after putting another one in twisting till it clicked then put my speaking valve back on! Wow my head was thumping feeling sick from the coughing I asked for an anti sickness shot off she went to get me drugs! 15 minutes later she came back luckily hughy hadn't entered the room she pulled up a seat to give me my shot! She must have sore feet I thought! Oh no, she decided to tell me she never knew what love was before she had children and how she was adopted!!!! Do I really look like I am in a position to give you sympathy?! Really!!! She then proceeded to give me the other medications I was due through my NG tube and also the mouth drop I was due, usually 1-2 drops as I was nil by mouth still I could not take anything orally! Not according to this nurse a whole tube of fluid squirted into my mouth! Again my trusty yankeur came to save me! Wow had she just came off the street and put scrubs on?! She finally left me and I drift off to sleep to then wake up and gave an 'episode' I rang my bell, I need help she said the healthcare assistant is on her break and turnt off my bell. 30 minutes later I rang again, the healthcare assistant is on her break as soon as she is back we will clean you up! 2 and a half hours later the healthcare assistant walked passed my room and could tell there was something wrong! Please I begged, please help me! She was disgusted and sorted me out which I was very greatful of! I tried to dose off again but I was worried in case she came in again and tried to do something to me! Finally 7.30am handover to the daytime staff! Excellent one of my faves was on! As soon as she came in she could tell I was tired and not myself! I told her what had gone on, apparently I wasn't the only one that had had problems that night! Also plans hadn't been updated either! The sister was furious and could not believe the cover she had been sent! That day when my mum and dad arrived i just burst into tears! It was like the scene from Goonies where Chunk had to tell the Spirelli's everything, and this happened and then this and this! They went to see Sister and agreed to write everything down! Sister was not having her on her ward again! Thank god I thought!

Part 12 - Me n my bonce

So the comfort of my own room, what was the first thing I asked mum?! Please can you shave my legs! Without hesitation she grabbed a sick bowl with water in, my shower gel, got a towel off my nurse and my razor! Goodness how awkward is it when someone else is shaving your legs but you can't move them! Quite pedantically I pointed out the bits she missed! I'm surprised I didn't have black eyes to add to my list of ailments! I would have if I was her! Hhhhmmm now what! Oh could you paint my toenails please?! Mr Chandler said I could! Mum obliged again whipping out my nail polish she had been carrying about for a few weeks! (No wonder why women's bags are so heavy, we carry everything around in it! Either that or my mum was impersonating Mary Poppins!) I felt proper pampered! Anyone reading this who is a beautician take note you should seriously do or think about setting up a mobile business in hospitals! Just thought I'd put there out there! They seem to have hairdressers but no beauticians and I would have loved to have my new found hairiness tamed! They would have made a fortune from me alone! 7.30pm the time of day I hated the most - handover time! What nurse am I getting? Do they look nice? Will I like them? Will they answer my buzzer? Really worried but trying to stay brave I said goodnight to my mum and dad! Reminding them as they went it was only 18 hours until visiting time! And boy did I count every minute! My room also had a TV! Cor what should I watch first?! Earphones plugged in (lucky mum had kept these in her handbag waiting and I think secretly wishing I wanted my iPhone to listen to music) dad got me a TV card I would be well set! Balancing my yankeur and call bell I could just about lift my arm to turn the channel over as it was touch screen! Sometimes I couldn't lift my arm up to turn it over so would end up just watching anything! After all I hadn't seen anything at all for weeks sure it wouldn't harm me! I wonder what had happened in Eastenders? What was happening in Corrie? You know what people were in bloody hospital! Phil had been in a car accident looking as beat up as ever! Nick from Corrie was also in hospital after a car accident, with blooming brain injury! Both had the same gown on as me ggggrrrr that's the last thing I needed was to watch people in hospital on TV in hospital! I will stick to films! So I did and my first night I watched the film Red with Bruce Willis! Pretty good I liked it, now what?! Another film oooohhhh the end of Demolition Man! Now able to tell the time too only through the use of sky news channel! Wow I must go to sleep it was really late and my eyes stung from watching TV again! Only 12.5 hours to go till mum and dad were back!

Part 11 - Me n my bonce

Another day another bed bath, OMG what is that? Now nearly 2 months in and not having shaved I was starting to resemble chewbakka!  Also Mr Chandler had told me I could paint my toenails, if only I could! That would have to wait until I was a bit more mobile as my physio was still only consisting of sitting in my chair which made my bum so bloody numb, the occasional standing with the flabelos like contraption or sitting on the edge of my bed, still no star jumps or running! Let alone cock me legs up to paint me trotters!
My goodness this summer was apparently hot (I say apparently as I hadn't seen the outside world since 5th June - last fag day, apart from seeing the sky that one night when I was in the medical unit) everyday when my mum and dad arrived they would fan me constantly until they left. It was so hot in HDU that even a couple of nurses had called in sick they couldn't work in the heat in the ward due to their asthma and exhaustion! The air conditioning had broke in the HDU ward and the hospital did not have the money to fix it! Not very helpful when you are that poorly! Nurses tipped us off to complain to PALS, which I think my mum made sure every person who came to see me did, resulting in me getting my very own personal air conditioning unit!!! Surely it would be cheaper to fix the problem rather than hire these costly units? Sometimes I got a bit chilly but I didn't like to complain, some people are never happy eh?!
One day when mum and dad arrived it said ward next to my name on the board outside HDU, does this mean I'm moving? Please, please let it be! But nothing apparently they were waiting for a bed it just meant I was ready to go to the ward! Days came and went until a few days later the sister came to see me, you are going to the ward today Danielle, we are just making the final arrangements! YES!!! I must be getting so much better if they are moving me! Not only was I being moved, I was in my own room again! Result! But nope still no ensuite! Oh well, not as if I could use it I suppose as I still had my catheter in and couldn't really move! Hang on a minute where's my AC unit! I wasn't allowed to bring that with me but hey I now had my very own windows that opened and everything, in my very own room! Ok the view was of the brick wall surrounding Ruskin Park but it was my view! Little did I know this view would be mine for 68 days! Oh look a helicopter, I could also see the air ambulances arriving and going, I was amazed how many there were, busy days seemed about 6 on a quiet or good day there approx 2! Still in the midst of a heat wave mum opens the windows for me, my dad was on his way from parking the car with a clip board he found in the car for me to fan myself with. On it he wrote Property of Danielle Chisholm, Kinnier Wilson Ward 01/08/13 funny how you remember certain things. Room 23 was now home, a bit panicked now though in ITU I had my own nurse, HDU was 1 between 2 now I was in the ward my nurse had 6 of us! 6! Wow that's a lot! Great she is never going to know when I need her, I'm gonna choke for sure and no one will ever know! But my nurse reassured me, gave me my call bell and explained how it worked! Now not only would I not put my yankeur suction down, I also held onto my bell for dear life too!

Part 10 - Me n my bonce

I had no idea what the time was most of the time as I could not see a clock and there was no tv's due to it being neuro HDU the colours and flicking of TV would not be great for us! This meant a whole lot of people watching! Usually my favourite pastime probably because I was a nosey bugger, but this was not the nicest of things to watch, everyone was really ill in there! Hang on that must mean I am too! Realising what I was going through I felt like I was in here so long even the healthcare assistants were actually leaving as they had qualified! Come on Danielle pull yourself together and get out of here! You've already missed BBQ's, girls nights out, birthdays, anniversaries and now a holiday, what next?! I had a retirement doo in September and a family wedding in October I best be out of here by then so I can go enjoy and shake a leg with everyone! The same 3 friends I mentioned earlier came to see me and gave me some good news they'd only managed to get tickets to a concert, not just any concert though (no not Marks and Spencer's either!) Will I Am's one off concert at the 02!!!!!!! Dope! Woo hoo! Something else to look forward to!
My EVD could be removed, a doctor came and it was done at my bedside, I thought I had to go to theatre but nope it could be done there! The doctor that did it looked too young, no anaesthetic wow this is gonna hurt I thought, but it didn't! The only thing I felt was when he had to stitch the hole back up, slight pain as after all it was my head with a needle going through it! Squeak! Eeeewww I could hear the thread being pulled through my head!!!! Be brave Dan, be brave! All done and dusted in about 10 minutes! Wait till mum and dad get a load of this I thought! How flash! Lol! After this my head was sticky still, was I sweating like a beast or is my head leaking? I had these special pads put on my pillows (all I can describe them as was massive sanitary towel but in a sheet form, no wings though!) nope my head was leaking! So another doctor came to stitch my head some more, this time anaesthetic was injected into my head and another 3 stitches done. Bit numb this time but could still hear the squeak as the thread was pulled through my head! Mr Chandler came to see how the new stitches were doing along with Pedro, he got more than he bargained for when opened my curtain! I had just had an 'episode' they then moved to the head end of the curtain to see how I was doing! It always gave me a boost when I saw Mr Chandler or Pedro such great bedside manners and made me feel they had great hope in me! A couple of days later my head was still leaking! I had finally become that tea bag with all the holes the doctors and nurses had stabbed me with so many needles, I was leaking! So again more stitches (all this was to try and save me having a shunt!) this time I begged that my dad could stay as mum was too squeamish! He covered my head with a sheet of paper had a fishing hook looking needle threaded and my dad's hand! What more could I need? Oh yeah anaesthetic! The poor doctor was told this by me, my dad, any nurse I had told including the sister, I think he got the hump in the end with everyone telling him! The fishing hook needle snapped (I got one tough head I thought!) so a straight needle had to be used and not allowed any anaesthetic! Yikes! My dad holding my hand started talking to me about golf! Really? All I know about golf was, well, I was crap at it! But it worked taking my mind off of it and he was finished! Phew please work I remember thinking!
My nurses again all really nice and a few days later I had my hair washed again! Yay! Having only bed baths on a daily basis a hair wash too really made me feel refreshed and a little cleaner, considering I was borderline OCD before being admitted with 2 sometimes 3 showers a day I was coping with the mingingness (should get this word added to the oxford dictionary!) quite well! No blow dry again, dry naturally, naturally now seemed to be a big frizzy mullet (Pat Sharp would have been jealous!) then mum would plait it again for me!

Part 9 - Me n my bonce

So when you have a tracheostomy you have to be capped off for 24 hours apparently! What is that I thought?! It's like a bottle top/cap on the end of the bit sticking out of your neck! My god was that hard to keep on, I managed 5 seconds which felt like forever! As I couldn't tolerate that I was given a speaking valve instead, let me try out this bad boy! Yep I sounded like Louis Armstrong or Nick Cotton! "Hello Ma" I said then sang we have all the time in the world! I have a voice, it may not be MY voice but my mouth was open and sound was coming out! Woo hoo! I got some time to be making up for here! But was taken off of it of a night time as the cuff of the tracheostomy had to be inflated to stop anymore gunk going onto my chest! Which meant it was safer but I would have no voice, I wouldn't let mum and dad go home before this was inflated again as I would go into crazed woman panic mode that I would choke! So after the handover each night back they'd come for another 10-15 minutes where I went into meltdown practically, not wanting to be left alone, make sure my cuff was up and then decide on 100's of things I needed doing all urgent of course! My ploy to keep them there longer! But they soon wised up to this, not that they wanted to leave but getting turfed out of a night by the sister wasn't a done thing apparently!
Physio's back and now bored with just sitting in my chair I want to skip or do something more interesting! They want me to stand up! They must think I can stand up! OMG I've got to stand up! S*** I have to stand up!!!!! In wheels an awful looking contraption, how an earth is that going to help me I thought! It looked like a massive flabelos machine on wheels with strap to put round your waist/bum! So shuffle onto my side and dangle my legs over the side, rest my feet on the foot plates, my physios strap me into the machine and pull my gown round to cover my bum a bit! Ready Danielle? 1, 2, 3 up thinking I can just stand it has now been about 6 weeks since I last stood it's hard work, arms and legs shaking, going dizzy with headrush but I did it! Check me out, I'm standing!!!! Quick sit I need to sit! Down I go, 2 more of these and that was my session over and me absolutely knackered for the rest of the day! I reward myself with a sleep, why not it's not visiting time, nothing else to do! Then the ward rounds by the doctor of the ward, he only grassed me up to my mum that I had been sleeping! Apparently he said I was only allowed an hour 2 tops during the day! Cor this was going to be a hard challenge staying awake! At least now during visiting I had my speaking valve on so I could talk to the visitors I had limited to so few. Hopefully by reading these you will realise I wasn't being nasty not letting people come up but before now there was no point as I didn't really know you were there properly anyways, plus I couldn't speak! Then when I could I would get very tired very quickly! Plus you should have seen the state of me, greasy hair again, tufts of hair at the front a tuft at the back and plaits! Not my sexiest look! Speech and language team came back every now and then and it seemed to be a different one near enough all the time, high turn over of staff or was they getting fed up with me?! I still could not tolerate the cap for longer than 10 seconds! I was never getting rid of this I thought!
Again it had been a few days since I 'made some room' shall I say to put it politely, anyone who has had a suppository or an enema will hopefully empathise with me here the most awful thing to have done, you have no control and feel like you are either going to take off or explode! The nutritionist had now introduced more fibre to be given to me through my NG tube this should help and get me away from them nasties, but no these 'episodes' continued until I was able to eat and drink again so I will not mention these 'episodes' again.
More people that had been admitted after me had been discharged or gone to wards, again thinking when am I gonna get my go?! Days and nights passed, turned into weeks in HDU (4 weeks I'm told!) still nil by mouth and actually wanting hospital food now, anyone that knows me well knows I'm a salad dodger but I was even craving a bit of lettuce, oh maybe some honey and mustard dressing, some cheese, a side of chips, a burger in the middle to share?! God I wanted a meal no more milkshakes through my tube I wanna chew! But it would still be at least another 4-6 weeks before that would happen too!

Part 8 - Me n my bonce

My first experience of HDU? The alarms, someone's crashed, the defibrillator wheeled out about 20 people round some poor buggers bed! It was late all lights were on low but I could hear and see what was happening! The next day he crashed again! But he made it! Mum and dad got chatting to his family the guy had brain tumours and the doctors said to the family the next day there is not much else we can do for him, we need to make the decision to turn off the machines, his partner asked for time to think about it. The next day he was responding and getting better and stronger, he ended up leaving hospital before me! Another guy mum and dad got friendly with parents of in the family room had several brain tumours, he had lost 6 stone in weight, he also had a trackie and a NG tube like me! I think secretly both sets of parents used to compare us, they used to travel every day from the midlands to see their son, I was very lucky to have my parent so close!
During my first night I also got told off for using my buzzer as I needed suctioning! I was very upset and the next day worked on holding the yankeur myself so I could suction when I needed it and not get told off!
One night an older lady was brought in by ambulance, she came from Margate (Joan was her name) her daughter in tears speaking to the consultant she had several blood clots on the brain which needed removing which would mean surgery which was risky! I couldn't see her but in a way she reminded me of my nan, lots of family came to see her and they seemed to be a close family too! She even asked dad to massage her feet one day after he had done mine, but no chance I was lucky he was doing mine, even though she offered to pay too! By this point he had googled reflexology and had a picture of feet saved as his screen saver on his phone of the pressure points in the body as I had some trouble going to the loo! I'm sure it was these massages that kept me going, without having to spell it out to you all! My dad also had my hairband on his wrist from the day I crashed which he wouldn't take off and said he wouldn't take it off until I was out of hospital!
My chair also came with me to HDU I was hoisted into it to do my hour as often as physio's could come round which we later found out was 3 times a week, not really enough and the doctor of the ward kept telling me I need to be out of bed daily! Don't think he liked my mums response of well she can't do it by herself she needs help and the physio's only come 3 times per week and the nurses are not allowed to use the hoist! After that the nurses made my bed sit up so I could clear my chest if they couldn't get me out in the chair! News on my tracheostomy - I'm being downsized, this means a step closer to get rid of it! Maybe I will get to go on holiday with Aaron, Claire and the kids! I'm cutting it fine though only 3 weeks to go! If only I knew I still had 3 and a half months of staying in hospital and rehab ahead of me! Mind you probably a good thing! Awaiting speech and language therapists to come along to say they anaesthetists are aware you are waiting to be down sized and will be along to see you a whole week passed and nothing still, had they forgotten me? I couldn't tell you a lot about having my tracheostomy changed I was awake but sure I was dosed up with something! I just remember a tall guy and a lady came and it was done in what felt like seconds! At least this time they didn't have to stitch it to my neck like they did initially! It seemed to be from then I suffered a lot with being sick! I still wasn't eating or drinking still had my NG tube or some random flavoured milkshakes all mixed together (glad I couldn't taste it to be honest!) chocolate, strawberry, mocha, vanilla all in one tub! I had to keep having an anti sickness shot which they had to dilute but stung like hell going in IV! Blood tests were getting harder and as cannulas had to be changed every 3 days my veins were hiding and I was covered in bruises! I was referred for a PIC line which is a more permanent cannula as it can last upto 3 months as it is in the main artery, at least blood can be taken from it, I can have medicine and anti sickness shots through this too! The procedure was like a mini operation though! My emergency trackie bag packed put on bed, oxygen, portable suction, all seemed a bit overkill but best best safe than sorry! I had to put my arm in the most awkward position as it went into the inside part of my bicep, I could flinch and held my nurses hand (wow I held a lot of hands I realised from typing this!) and although it stung it hurt less than it did having blood taken from my wrists, ankles and feet!

Part 7 - Me n my bonce

Finally I had a nurse that asked me if I wanted my hair washed! A big hell yeah! But my god no wonder why they hadn't done it before what a parlava! Especially as they had to mind the EVD as it had to be at a certain level to my head to drain correctly! Had a big tray like the sort you get on highchairs but in a speech bubble kind of shape and a big bin to catch the water! This hair wash was probably the most uncomfortable hair wash I had had in my life but at the same time it was the best, although I didn't get a blow dry finish! The same nurse also brushed my teeth for me, without sounding like a proper minger again this was the first time in a few weeks too! Still nil by mouth the water felt so good in my mouth and made me feel I wanted a drink, I had now developed a craving for some fanta! No chance though wasn't even allowed water! The nearest I got to a drink was sucking on a sponge also used to clean my tongue and gums! Mum and dad would massage me trying to get feeling back in my legs and hands (little did I know they were told to prepare for the worst, let alone the fact I could be permanently paralysed!) I had daily sometimes hourly foot rubs from my dad which the nurses became very jealous of! And mum rubbing my hands bending my fingers backwards and forwards then saying you do it now! The nurses all worked long shifts, 12 hours on! That's a long time on your feet, and still they made time to make me smile or actually care by a simple wink or telling me how I'm doing, even if they didn't care I really felt they did! Well all except xxxx and 1 other you will learn about later! xxxx was my nurse once, she patched me up to all sorts of unnecessary tubes and really didn't take as good care of me at all! I can't remember exactly what she did but the sister promised I wouldn't have her again! During handover times the noise in the unit was crazy as it was 1 nurse to 1 patient it was like being in a packed hall! 1 nurse - Emma asked me if I had my iPod which I didn't I had tried to but I got so frustrated as I couldn't scroll through songs which was so simple! She put an album on for me to listen to while handover took place. Maybe 'I crashed my car into the bridge, I don't care' wasn't the greatest of choices but it perked me up! Then it got stuck on repeat (about 4 times!) with some cheesy boyband song! Again unable to talk or move I just had to wait patiently to get eye contact and mouth thank you so she could turn it off!
The day came it was finally my turn to leave surgical critical care! Woohoo! No more intensive care I'm going upstairs to what I thought was a normal ward! Yay maybe I will start tomorrow with a nice hot shower, paint my nails..... Oh hang on, no I can't do any of that! It's not a 'normal' ward, I'm off to medical intensive care and I still can't move! I was wheeled up in my bed and put in a bay next to a window! I couldn't see much but outside world was so thrilling even if I could only see the sky! I only stayed in this ward 1 night as I was then moved to High Dependancy Unit (HDU) this was a scary move I didn't have my own nurse now it was 1 between 2 (that sounds like being at school and having to share a book) sharing a nurse was petrifying what if they didn't notice I was choking like I so often did as with a tracheostomy you need suctioning quite a lot! I'm never gonna make this!

Part 6 - Me n my bonce

Physio's kept working on helping me sit up and seeing that chair with my name on it (not a figure of speech it really did have my name on it!) made me more determined plus it looked a whole lot more comfortable than my bed! Headrest, soft cushioned arms - luxury I thought! Then the day had arrived the physio's bought a hoist round, they thought I was ready to actually sit in my chair! Whoop whoop! But what an earth I felt like a beached whale being moved, this thing made of sacking material placed under me to lift me (please don't let it break or drop me!) then wow I was in the chair pleased as punch with myself not realising I was too short for it at first I needed pillows under my feet and behind my head to make it feel comfortable! The nurses had sent my mum and dad outside as they came in when my curtain was drawn as they wanted to surprise them, although I think this worried them - why was they being sent away visiting time was only 10 minutes away they wasn't that early?! Then they walked in, surprise!!!! Still unable to talk, we all just cried, another milestone, I could sit! About 10 minutes in and wow sitting was uncomfortable, my bum hurt, my ankles were swelling to kankles, I want my bed back! But I had to wait at least an hour in the chair they said! Was like a child asking mum and dad (well mouthing) "is it an hour yet?" I kept sliding to one side and had to be pulled back over! I had no core strength at all! Nada! I made it an hour woo hoo bed, comfortable again, apart from getting back in the hoist to get back to bed, being pulled about like a sack of potatoes to get the hoist sling thing out of being between me and the bed! That would then be my physio an hour of sitting everyday to help clear my chest! And bloody hell did it knacker me! The next day came mum and dad arrived excited expecting to see me in the chair but I was having a bad day, really tired, high temperature, could only mean one thing - another infection! More antibiotics on IV drip, I was beginning to resemble a pin cushion! Again I don't remember much apart from hot and cold flushes and sleeping lots! One of the nurses made me a fan out of an obs chart and a mouth breathing piece thing taped to it. I could now just about manage to fan myself as a little movement was coming back, the drain was working at least. My mum and dad spent the whole of visiting time fanning me, I was one big sweat pile, sexy as ever! Oh and my hair still hadn't been washed at this point since operation day! About 3 weeks, how very slick! I remember the old boy opposite me, and being so very jealous he could pull himself up in bed, talk, eat and drink! People were coming and going but I was still there, stabbings, car accidents, motorbikes accidents (one motorbike accident beside me, never did see him as I was now mec-a-neck with my trackie, apparently he was quite a looker too!) when was it going to be my turn to leave this ward?

Part 5 - Me n my bonce

So the world is at war, there are only so many nebulisers to go round how will we all survive? Luckily I had really clever people on my spaceship that could make them up, and smuggle some in from the spaceship next door! Wow brave people as if you go outside your sure to die within 24 hours! Best order me some chicken I thought! KFC ordered and they deliver (and yes dad they do do chicken too, sorry private joke!) so the delivery driver arrives I paid him but was unable to eat so gave my bucket of wings to the nurses! (Cor just how strong are these drugs? I'm sure people pay good money for this god knows why!) So we were waiting for the raffle of the day to be drawn, I didn't win again so no operation for me today, instead a photo shoot with a football shirt, they better give me the Chelsea one I thought! They gave me my injections for the photo shoot, which also made me invincible I would now live forever and the world was mine! Mwah ha ha ha! (That is my evil laugh by the way!)
As always mum and dad came as they did everyday! Today was no normal visit we was on a roller coaster with people dressed as police men and women but the ride was stuck and I had just been through the car wash part and it had sprayed my eyes with acid! Ouch! At the end of the roller coaster was a lift I felt like I was living a dream on the set of fun house (even had Pat Sharps mullet kinda going on!) but living the dream in a bed that wouldn't fit in the lift! Oh no what would I do! My oxygen was running out and I needed to be back upstairs, why is no one helping me! They can walk, just use the stairs! Well I must have fell asleep or the lift worked as I was alright the next day, apart from the brain drain and tracheostomy of course oh and obviously still bed bound!
So they were all more hallucinations which I have laughed and cried about but some I have not mentioned before now, one that wasn't a hallucination is a very poorly person in a bay next to me. It was like a scene from Indiana Jones with all the family coming to see him and a witch doctor visiting too! Seriously she must have been 2 years younger than god, proper old! Complete with shaky stick thing too, it reminded me of some witch doctor from a cartoon but can't remember which one! All chanting getting louder and louder, something about go to the light is all I remember them chanting, it was all very scary and fortunately the sister of the ward asked them to quieten down as not only scaring me but others too!
I was moved away from the nurses desk now in bay 16 but still in the surgical critical care unit, I must be getting better I thought! Was petrified though what if something happened to me or I needed something I still could not speak and communicating with blinks for yes and no's and having people point at letters on a sheet of paper to spell out what I wanted - very frustrating! My mum thought one time I spelt tosser! I'm sure I didn't but hey I was off my face so who knows what I was thinking!!!! The speech therapist brought me round all I can describe as a speak and spell, which the idea was great but I couldn't move so just frustrated me more than to try and mouth things out! Then a big smile, my physio's delivered a wheelchair, yes it looked a little Stephen Hawkins style but it was mine and they thought I was well enough to sit out in a chair let alone sit up! So 3 physios came to my bed, right Danielle today you are going to sit up! Wowsers how exciting I thought! But bloody hell who thought sitting up would be so hard! All I could manage was to sit on the edge of the bed with the help of the physios practically pulling me into position! Wow today I was so proud of myself but also worried, was this it for me would I ever be able to sit/walk again by myself? I  can't even sit on the edge of my bed myself let alone get in a chair! I wish I was back on my spaceship!!!!

Part 4 - Me n my bonce

So I was kept heavily sedated as I had various tubes helping me breathe, keeping me sedated and something called an NG tube in my nose feeding me! As I obviously couldn't chow down on a cheeky Chinese or dominoes pizza! I also couldn't move! I was completely paralysed, my worst nightmare had come true, all I could move was my left foot slighty and wiggle the fingers on my left hand! The doctors were baffled but after more CT scans could see I had a build up of fluid on the brain which needed to be drained! I wasn't aware of this and to be honest didn't really care, my head was shaved on the front right hand side and an EVD was inserted (sorry cant remember what that stands for, something something drain!) To be honest the next few weeks are a bit of a blur too where I was on something called fentaline keeping me sedated so I didn't pull out the tubes! I kept running a temperature and remember being looked after a student with short blonde hair and very over the top when talking over annunciating every word! (I am actually doing the same whilst typing!) More beeps, you'd think I would have got used to these by now but I never did then a long continual beep, not one I had heard before, was that a flatline? Am I dead? No just my temperature making me think weird things! Next a green sheet of bubble wrap with ice in was laid on me (knew I must have been ill as I had no urge to pop it!) my temperature still wasn't coming down so one was put under me as well as on top my hands were freezing I remember looking down and thinking wow my hand is black, I must have frostbite!!!! No it was actually lots of monitors I was hooked up to and cannulas! Phew! Physio's Jimmy and a lady I kept calling Jackie (her name was actually Tessa, well I had had brain surgery so am just gonna use that as my excuse permanently now! You have been warned!) I had to cough whilst it felt like he was trying to crush my ribs to get all the crap up off my chest! Also a tube in a bag they used to push down my throat for me to cough and then suck up gunk, thats the easiest way I can describe it and is about as sexy as it sounds! My next memory from then is a man called Dr Clem (also seen in 24 hours in A&E) a lovely doctor with a bald head and his tie permanently tucked into his shirt to stop it dangling in anything gross removed the tubes from my throat! Finally I thought, I was with mum and dad again whilst I tried so hard to get everything off my chest with the help of a suction tube (medical term a yankeur, pronounced like the naughty word with a y) but after what felt like hours I was still struggling too much, breathing was hard and it was too dangerous to leave me without anything! I had to consent to an emergency tracheostomy! Well again my poor dad had to sign the consent form! I thought it was a permanent thing and what only people with throat cancer had! But I needed it so it had to be! This is I think my first hallucination well i hope it was anyway! I wasn't completely knocked out and remember all these people in blue around me and saying I ain't doing it you do it! I asked someone to hold my hand again cos I was scared and the doctor moaned at me cos 'he was a doctor not a hand holder!' Well it explained why I kept giving one of the doctors dirty looks after too I suppose!
I remember being looked after by a particular nurse shortly after my tracheostomy was fitted (another hallucination coming up!) I was put in a machine and chopped up, I could hear my nurse talking, why wasn't he putting me back together I thought! Leaving me in this shopping trolley isn't good! Surely my blood was dripping all over the floor he needs to shrink wrap me quickly so I don't spill everywhere! Then I mouthed to him as I had no voice, "hurry up and do something, i'm bored!" this Irish nurse I could not talk to but only communicate by mouthing and lip reading I ended up having quite good banter with and he used to say he bet I sounded like a South London gangster! 'What you saying fam?'
So my brain drain was working removing the fluid build up but talks of a shunt were going on I had no idea what this was and was explained to me that it was a permanent tube from my head to my stomach where I would have to tilt my head back to drain my brain! I think anyway! Gosh that sounded awful but hey if it's gotta be it will be! The drained fluid in my EVD was tested every couple of days, a bug was found! Explained my temperature again! Swabs were sent to the lab and antibiotics were made up for me, according to one doctor ooohh surprised she is on those ones they are really expensive? Well my dear I'm no cheap bird, allergic to penicillin and need them and guess what, they worked!

Part 3 - Me n my bonce

The big day arrives
So I was left alone last night but more tests before I could go to sleep (and interrupted my viewing of TOWIE!) finally a lovely far too bubbly nurse Evie came round to do my ECG and obs at 11.45pm! Then finally I was left to sleep, not that I slept much though! Then 6am I was woken - really? My op wasn't until 12.30 was this necessary? Was given the lovely hibiscrub to shower and wash my hair in and some fetching disposable pants to wear with a hospital gown! Fortunately she gave me 2 so I didn't flash my bum! Mum and dad arrived and the nervous wait started didn't help that at the end of my bed there was a big clock so I was just constantly watching that! Pedro and Chandler came up to meet us finally about 11.30, don't know what I was expecting but he wasn't anything at all that I expected! In his scubs with the funkiest hat I have ever seen! Being he is usually a paediatric surgeon I should imagine it cheers the kids up! So final bit of time with mum and dad before they come and get me! Then with my sexy gown, surgical stockings and disposable pants I'm wheeled down to theatre said my goodbyes to my mum n dad, but they are not ready in theatre! So now pooping myself and waiting for the scariest moment of my life all alone I felt like a little girl again! Anaesthetists came to see me and I remember in particular woman and a man called Gary which I remember cos he had a really nice bangle on! I told them how scared I was and they stayed with me a while! Then finally the time came they were wheeling me in! OMG the theatre looked so scary the contraption I was going to be put in, the clamp that would hold my head still looked so scary! And how would they lift me in to it?! would i flash my bum? Then Chandlers words of you will be butt naked were going through my mind! Glad I waxed I thought! Then I had people surround me, putting in my cannula to knock me out! Again the 1 person I remember is Gary with the nice bangle I asked him to hold my hand as I was so scared! And he did and that was the last thing I remember his cold hand rubbing mine telling me I'd be fine!
I'm being wheeled up in my bed I survived that means the op will work! I was wheeled back to the ward and remember seeing smiling relieved faces of mum, dad! My aunt was also there all welcoming me back to the ward, I don't remember much apart from being worried about laying on my back in case I hurt my head which was probably stapled (thanks google images!) and having a slight headache, well suppose I should have expected that I just had a bit of my skull moved about! The nurses were great though giving me pain relief although I didn't want to keep using my buzzer and bothering them! The lady opposite me was a pain though this seemed to be a theme when I was in a ward which you will hear about later! Her food was too lumpy, her pillows weren't right, she was too cold! Behave and shut up some of us are trying to rest! Another lady next to me was in for weight loss surgery, I'm no wafer thin skinny bird but she didn't stop eating! Apparently this was the second attempt as the first time didn't work! Although her husband did offer to go get me KFC! Shame I was only on mushy food! The day after my op it was great to see my brother and sister in law, hey I'll be home in a couple of days tell the kids Auntie DL loves em and will see them soon! I also remember a visit from the 3 girls that are my rocks bringing me apple juice and nice cards! In particular a nice furry leopard print one with eyes! I'm sure I must be related to Bet Lynch! These few days after surgery were a bit of a blur and kind of mix into one big memory! I had got pneumonia and was coughing quite a lot and waiting for a blood test and also had an oxygen mask! A nurse came to take my blood and was very rough with the arm strap for blood tests and really hurt my arm. Not long after this I remember being lifted onto another bed and an oxygen mask being put on me, I had crashed, alarms were going off, this couldn't be good! I remember seeing worry on my mum and brothers face, dad was there too but he always keeps it together! Unlike me writing this now through tears! There were lots of people lots of beeping and a consent form was given to my dad! I had no idea what was happening but knew the right decisions were being made and I was in safe hands!

Part 2 - Me n my bonce

So pyjama shopping! Forget what it's for and it can be quite nice also a good excuse for a shopping trip with me Ma! Apart from backing into the post when we get there! No more driving for me this side of the op me thinks! Saw a few people whilst out shopping, did they know was that a sympathy smile or just a simple hi Dan?! Paranoia and worry setting in! A very quiet weekend leading upto my admission day Thursday 5th June! (Also the date of my last fag!) A quiet meal with some friends to be normal with and let them take the Michael out of me after all me n my big brain was getting sorted! Little did they know for the next 5 months and 1 day would they trotting up to see me in Kings and rehab! But like rocks they were stood by me through everything, as well as a diamond Mum, Dad, brother, sis in law, Aunts, Uncles, cousins the list is endless and would not be where I am without you all! Pre op done, half day at work Tuesday 4th June and celebrating my nephews 8th birthday lots of mixed emotions, big hugs with my niece and nephew that night! In the back of my mind they may have been the last or what if I forgot about them after my surgery? What would be worse, dying or losing my memory? I left my brothers that night quite emotional but not wanting to upset anyone kept quiet, typed a note on my phone of the funeral song I wanted, the cast of we will rock you - only the good die young! So my last night at home I had to get everything out to pack for my 5 day stay, so much stuff I ended up needing the holdall I take on holiday! Will I need my GHD's? Nah think I'll leave them behind! So hardly sleep then I spend the next day waiting anxiously for the call to go in, you have to wait to make sure they have a bed in case of emergencies! The letter says I have to be there by 4pm but I still haven't had my call, I rang the bed manager what seemed like a million times and then the call came we are ready for you Danielle! Yikes seemed like such a short drive to Camberwell that day even during school traffic! Here I am! Up to the ward to be told my bed is not ready and I have to wait in the day room! People coming and going 1 patient in the dayroom with a little plaster on his neck but like mec-a-neck from He-Man unable to move his head independent of his shoulders! Oh my that's gonna be me and this is his second op! I was only told I need 1, mum and dad could see the pure panic in my face I'm sure! I went with mum for a ciggie n dad chatted to him to find out more! Fortunately it was completely different surgery he had vertebrates fused together! Phew! Although I still kept staring at his plaster! Finally my bed was ready, my own room! Woo-hoo! Hang up where's the ensuite? Lol! Welcome to the NHS Spanner! So am now allowed to have a drink (of the soft kind!) so me mum and dad go to the restaurant also allowed to eat - my last meal! All looks a bit spicy for my delicate pallet so I kept it classy like the classy bird I am with a chip butty and a cup of rosie lee! Followed by not that I knew it then my last ever fag! Another good thing to come out of this I finally gave up fags after 15 years (10 if mum and dad reading!) Back to my room and my surgeons registrar came in for some routine tests, sensitivity, sight, balance a really nice bloke and to this day still can't pronounce his name so I call him Pedro! (Not that he knows this!) that's it mum and dad have to go, operation will be 12.30 tomorrow, but they are allowed to comeback earlier to meet the superstar that is Mr Chris Chandler!

Part 1 - Me n my bonce

So for about 3 years or so I have been diagnosed with lots of ailments and going to see numerous consultants and specialists for different reasons! Firstly something I've always kept quite quiet out of embarrassment! I was diagnosed with sleep apnea, not the usual obstructive type but central sleep apnea which is signals from the brain not telling the body to breath whilst sleeping! Off I went to St Thomas' to have sleep studies and was told my case was "interesting" but nothing more so off I went with my CPAP machine and enabled me to sleep! Woo hoo waking up feeling refreshed was amazing! Then came breathing problems, so again off to the doctors I went peak flow tests, huffers and the nurses convinced me and each other I had asthma! Until a visit to A&E with a nasty chest infection and a doctor told me I did not have asthma and there was no rattle on my chest at all! Back I went and the same asthma nurses that diagnosed me then said well if you don't think you need it don't take it! Helpful! Still nothing done and just left it, I put it down to me being a smoker and unfit! Then dizziness, feeling like I was walking to one side, walking into things, feeling like my head was shaking but actually perfectly still? What an earth was happening to me? I could deal with this until I kept falling down the stairs! One time so bad a whole bum cheek was bruised black and blue (that's a whole lotta cheek to bruise!) so again off to the doctors, guess what I need my ears syringed! Ok I could deal with that, olive oil in my ears daily and back I trotted in 2 weeks later for nothing to come out! Odd the nurses said! So just keep an eye on it! Still it happened and still my doctors were baffled! Then came the choking! Drinks, food basically anything I tried to eat or drink would choke me back off to the doctors (now feeling like hypocrite) and referred to a gastro-something-ologist. Come back and see me for a barium test to see if there is a blockage or something wrong with my food pipe! Up the hospital I go in the X-ray machine swallowing awful liquid, everything's fine they said, we will book a follow up with your consultant! I tried to carry on as normal, walking into things, getting pins and needles in my hands and feet, legs feeling like lead and it taking all my energy to walk! I really didn't understand what was happening?! Now started the headache, so bad I had to lay down with a blanket or pillow on my head until they went! If I sneezed or coughed too hard I would be knocked off my feet having to make sure I was sitting ready and waiting for these to happen knowing an awful headache and massive dizzy spell would follow! Am I imagining these things or is there something seriously wrong? In the end mum and dad took me to A&E! "Possibly a brain tumour" nonchalantly said the doctor, go to Darenth for a emergency scan! So absolutely devastated and convinced myself I had a brain tumour and would never lay down again like the elephant man we drove to Darenth Valley, to be put in a cubical gowned up awaiting an ECG, scary stuff! I could hear the doctors and nurses outside talking, the lady in cubical 2 who's had a stroke, hang on I'm in cubical 2! That's me!!! OMG WTF and all the rest! A brain tumour and a stroke, wow busy night!!!! Non of this was sinking in lots of sight tests, ECG, pee tests to be told I need to see a neurologist. But it's not urgent go to your GP who will refer you! The very next day I went to the doctors and got referred. 3rd January 2013 I saw my first neurologist Dr Fiona Norwood! I will never forget sitting waiting outside her room wondering what she was going to tell me, absolutely petrified! Danielle Chisholm she called and in I went, my life has not been the same ever since.... She seemed to know what was wrong with me straight away! Chiari Malformation (that's posh I thought!) the kinda posh you don't want though! Booked me to go for an MRI to confirm. February! Wow that's a long time and gives you far too much time to goggle what this posh thing was! Absolutely petrified my MRI scan day came around! 40 minutes in the scanner my brain and neck both being scanned, loud banging, knocking and clunking (I'm sure anyone who has had one of these knows what I mean) didn't even get to listen to my Now CD I took with me! Your neurologist will be in touch if there is anything found if not they will see you at your next appointment in April! March came and went then before I knew it my next appointment was here! No news is good news we all thought although I was now like a permanently drunk person walking into things and now slight slurred speech had kicked in. Danielle Chisholm called Dr Norwood, in I go! Then she tells me I haven't been sent your scans yet let's have a look.... Viewing the inside of your skull on a computer screen is a very weird thing indeed! My neurologist did not seem happy! Well I'm not sure why these haven't been sent to me sooner as I would have called you in sooner! You have Chiari Malformation and a possible split in your spinal chord! WHAT?!?!?!? I will refer you to Mr Chris Chandler (all I kept thinking was Bing!) he's a lovely American guy at King's hospital, he's the top of his game and has been on TV too! He will need to operate she said! More googling Chris Chandler, big curly hair apparently aha there he is! Then late May I got a phone call from Mr Chandler's secretary, we have a slot and Chris would like to operate next week, there will be no time for a pre appointment but he  will call you for a phone consultation this afternoon! Fags picked up from desk outside I went smoked about 3 whilst letting this sink in called my mum burst into tears on the phone and she sent my dad round to work to pick me up! An absolute mess I left work that day, stinking of fags, mascara run and probably a little bit of snot on the go too! Classy as always Dan!!!! So much to think about phone consultation went well and I was booked in! All that was left to do was buy new hospital appropriate pyjamas, have a pedicure and my nails taken off! After all I will only be in 5 days!!!!!