Part 29 - Me n my bonce

A normal day of being woken by singing nurses at the nurses station at too early o clock, physio, listening to moaning minnie, and choosing which delightful menu I was going to have I was finally told I was moving to my own room! Woo hoo! Away from Mrs moany and the lady who still kept asking me about my triplets! (Who by now had also progressed to asking me if she missed her plane and folding a tissue and putting it in her pocket as a passport! And even worse kept stealing my zimmer frame!) the sister in charge asked me if I wanted to wait until after lunch - nope I'm off now please! To my surprise I even had my own toilet AND shower! It had taken me 4.5 months but I'd finally got my own room and proper ensuite (no commode in site) also I got to watch my TV without earphones in as I wouldn't be disturbing anyone! Bliss! I called mum after I transferred my phone and TV over to my new abode and told her as I knew she would panic if she came in and I wasn't there! Unfortunately the room I was moved to is where Junior (the wannabe security man of the ward) friend used to be! Needless to say I got visited by him, sometimes scaring the hell out of me if he just appeared "hello my friend" he'd screech in his screechy voice! He was always be on guard when I walked up and down the corridor when I was showing off my walking with a zimmer frame skills with any visitors that came to see me! He always used to have a massive grin on his face. I felt quite sorry for him as by the nurses station there was a board with all the patients details - he had been in the rehab centre since May 2013! I thought I had been on a long journey! The rehab ward that I was on was for neuro patients, mainly the people on the ward had had strokes and it was awful to see some peoples struggles, even though I felt helpless and like I could not do anything for myself it made me appreciate just how lucky I was to be here let alone learning to walk again  I at least had my voice which was a lot more than some other "inmates" on this particular day I saw a young girl admitted aged 23! She had had a stroke too and although could shuffle around could not communicate at all.
I was also visited regularly by one of the volunteers on the ward. She too had mobility issues with cerebral palsy and was permanently in a wheelchair, her sheer determination too was an inspiration. She was raising money for the rehab unit by taking 10,000 steps (not in one go but using the parallel bars - this was a huge challenge for her) she often visit me (I think I was her favourite - well she's only human!!! Haha) we'd chat, play cards, talk about films and going out and she would tell me about her social life - which was pretty jam packed! She would often come to my extra gym sessions with me and we would play catch with a big gym ball bouncing it between us! We both discovered we were pretty awful at aiming but all the better Physio for me having to bend and pick the ball up. She also lent me DVDs which I could watch on the laptop that the ward lent me too! I had forgotten how much I liked the prison series Bad Girls!

Part 28 - Me n my bonce

I made the most of my time being allowed out and stayed out as long as possible in the hotel bar after the wedding! Even though I was only drinking tea (you will hear later that this has been rectified too!) I stayed up until about 2am laughing n joking and someone (a stranger!) asking to have a go in my wheelchair! Dad had booked a disabled room in the hotel so I was so looking forward to having a shower in the morning! That night I only woke once for a pee! My poor mum half asleep helping me to the loo and back as I walked like Frankenstein with a soiled nappy! (My hips were still very stiff, one of the physio's had also told me to imagine a football between my feet - hence the odd walking!) The taste of freedom was amazing this weekend but it also made me realise just how little I could do for myself! Even down to my hair! I also hadn't yet mastered how to disguise my tufty bit of hair, but now have it sorted! I think! Final goodbyes at the hotel and a laugh at my newly married cousin and his wife as they forgot their overnight bag so were incredibly overdressed at breakfast in complete wedding attire! My curfew was drawing nearer - 6pm I had to be back to the nut house! Moaning Minnie next to me, the woman opposite still asking how my triplets were and Junior (the hello my friend - waving man) still being security on the ward! Oh how I hadn't missed this place! Had I gone crazy and no one was telling me! I was allowed out every weekend from then onwards which was great as I got to see more and more friends who would visit me at home but also made me hate Sunday afternoons as I knew my curfew was coming! One particular day all my diamonds visited me, some fantastic news one was expecting her first baby! How exciting!!! Something more to look forward to! We all couldn't stop smiling, especially after we thought she was joking!
I was originally told my leaving date by one of the physio's - 30.10.13, I got a bit upset as they wanted to keep me another week! I made sure that the next date they gave me was correct 06.11.13 and early birthday present as it was my birthday the next day! Although they kept saying I was doing really well I felt this wasn't a good sign but they wanted me to build up my stamina more and as a rehab centre I was in the right place! A full on structured timetable of physio, occupational therapy and hydro! Wow hydro was so tiring!!! I love swimming so when I was told I would be having hydro I could not wait! Thank god i'd been waxed I thought! I though tights were hard to get, but my goodness a swimming costume when you can barely stand! Luckily my mum came in early that day to help me get ready! She closed the curtains and operation swimming costume began! Turns out that was a physio session in itself! Me and mum were laughing so much that a couple of nurses came round to make sure I was ok as they could hear me at the nurses station! The porter came and got me and off to hydro me and mum went! Well it was a lot smaller than I imagined! How an earth am I going to get up those steps I thought?! But no of course there was a hoist! A chair which then lifted you high in the air then lower and lower until you were in! It was so warm it was like standing up in a bath! Still petrified of getting my hole (tracheostomy hole) wet I did want to get my neck wet which proved difficult! Just walking in the water was tiring enough but now I had 2 physio's waving floats underwater from either side challenging my balance - I felt like I'd had a night on the tiles! The getting out was just as undignified, in the hoist but had to wiggle my bum in the seat to get rid of the excess water as the seat had no holes in it! Wheeled to the shower  and then get dressed all of which mum helped or practical did for me! (I think this physio was more hardwork for my mum!) then back to the bay! I was shattered! Hydro is fun but really draining! After about an hour being back moaning Minnie next door was too much so mum wheeled me to the restaurant where we ended up going most afternoons for a cuppa splosh and a bit of cake!

Don't look if you're squeamish!

Well I have finally plucked up the courage to look at my pictures and now feel I can share! Some of these as you know from the blog I had no anaesthetic! Tough bird or what? 

 A fascinata can hide a multiple of sins! The below pictures are from my brain drains, unfortunately I didn't get proper 'fresh' pictures of my zipperhead scar as I was so out of it in intensive care!

Part 27 - Me n my bonce

So an hour and 15 minutes of waxing! Again my poor mum beside me helping me turn and lift my legs to wax all the way round and dad having to wait out in the car! The place I use are ever so nice and told me if I needed it done again whilst in rehab as long as they could use a microwave they would visit and de-fuzz me, they also gave me a gift certificate for a facial for when I am out and able to!
I struggled with mum back to dads car and we get fish and chips! Oooohhh a chip buttie!  It felt like I was tasting everything for the first time again! By now I was absolutely shattered but I still had to see what I was wearing tomorrow! Whatever it was it had to match my black and pink fascinata to hide the mullet I was now sporting! Luckily I had a few black dresses in several sizes and just so happened to also have a pink coat and bag to match too! Now for a challenge I feared!!!! My stairs! These had been a nemesis to me before I had even had my surgery, the amount of times I had been dizzy and slipped or just fell down them I now had to climb them to sleep! So now with my crutches and my mum infront of me, my dad behind me they helped me get up the stairs! Wow, chuffed I actually made it up them, never mind the fact I was now absolutely cream crackered I had climbed a flight of stairs! I had only tried 1 stair at rehab so this was a record! I was now completely ready for bed! As my bedroom was on the second floor at home and I needed help getting to the loo during the night as my bladder was now the size of a peanut I stayed with my mum, dad vacated and slept in the spare room! An actual real bed! So comfortable I couldn't believe it, this was luxury! Before I knew it it was the morning and it was all systems go! As my shower wasn't yet adapted for me I had a wash down (strip down sloush as me nan would have said) and mum washed my hair in the sink I got dressed again with help from my mum (tights were awkward to get on anyway let alone now that I could just about stand on my own, I felt like a toddler, holding on to my mums shoulders as she rocked me backwards n forwards pulling my tights up n up n up until just below my bra - just where I liked them to be!) Mum still hadn't had a chance to get ready as she literally had to do everything for me, so while she got ready dad was in charge of blow drying my hair! Dad hadn't done this for me for about 20 or so years! But since I couldn't even do my own bra up I needed him to do it and he was willing and oh so very gentle! Mum straightened my hair, fascinata was positioned, make up was on, I was ready! Folkestone here I come!!! We drove down to the hotel we were staying in dropped off the bags and went onto the venue! Typical English weather the heavens opened! I needed to get in my wheelchair that rehab had lent me! Armed with big golf umbrellas and a few laughs along the way and dad pushing me like we was on a formula 1 course (complete with pot holes and puddles) we made it to the castle and was greeted by the toastmaster who I must say was fab! They wasn't expecting a wheelchair user but within moments ramps were put out for me. It was really emotional, I didn't believe I'd be strong enough to get to the wedding but here I was laughing and joking and generally being 'Dan on wheels' was lovely to see the family and be part of my cousins special day!

Part 26 - Me n my bonce

I had already missed birthdays, Father's Day, a family holiday, nights out, nights in, BBQ's, a trip to Vegas and a retirement doo! There was no way I was missing my little cousins wedding (I say little, although he's about a foot taller than me!) I had already spoken to the sister previously at hospital to get released for the day so when I was at rehab they knew about it too! My giant doctor had agreed my home leave for this too! Woop woop! It meant working harder to ensure I was strong enough and had enough stamina but I didn't care I was going! So now I needed an outfit! All I had worn for 4 months was hospital gowns, pyjamas and track suits! I had no idea even what size I was! Fortunately I have a wardrobe spanning about 6 dress sizes so had a variety to chose from! One of my diamonds was getting me my tights! I still had the issue of cropped hair on 1 side of my bonce! Fortunately at weddings fascinatas are acceptable, plus I had a nice big pink and black one already! I already had pretty flats as I hadn't been able to wear heels for quite some time! Pretty much sorted then!
My physio's at rehab were obviously aware of the upcoming nuptials I was going to in Folkestone so we practised standing for longer periods and walking holding onto hands for balance and building up my stamina. On a particular day whilst standing within the parallel bars my physio's tasked me with standing and waving to ensure the other movement didn't throw me completely! I was managing to do this alternating my hands when another guy from the rehab centre peered behind a post, waved back at me and in his amazing distinctive voice said "hello my friend" well good job I had the bars to hold onto as it really made me laugh! A comedy gold moment which I suppose is more funny if you were there or knew his voice!
I asked for extra sessions in the gym whenever I had free periods, I joint activity groups and even the wii group. I was so determined to get out and to be at the wedding! One day at wii group (not band camp for any American Pie fans!) we were playing wii with the physio supervising, getting on and off the wii board using crutches now I was showing off! But that is where it ended as I came last I think for all wii board balance games! Mind you the result was we were all unbalanced so I wasn't miles behind! Then came the bowling! I had always managed to have a good technique for this, I took my turn.... STRIKE! Woo hoo! Passed the wii mote and we all took our turns! It wasn't until about the 3rd round of turns I realised and said something! "Oh look we are all left handed!" As soon as the words left my lips I realised something! Their right arms were in slings!!! The guys I had been playing with were all stroke victims!!! It was awful I wanted the ground to swallow me! I apologised profusely whilst blushing! Thankfully the group was nearly finished anyway and I returned to my bay.
So not only had I managed to wangle leave for the wedding, I was allowed out for 2 whole nights! I could leave on Friday afternoon and my curfew was not until 6pm Sunday! Wow the freedom! First thing I got mum to do was call and book me a waxing appointment! My first stop from rehab was to be de-fuzzed! No more wuki Dan! Even if I was in there over an hour it was the best hour I had endured over the previous 4 months!

Finally some pictures!

Ok so here's the first of some pictures...

My tracheostomy....

The white part was the bit in my neck, inside was another tube well that just really collected gunk! The smaller tube was fitted to the end of the tracheostomy and was called a Swedish nose! Not sure why I'm sure Swedish people do not have odd shaped noses!!! I must add this is not the actual one, this was one prepared to go in if things went belly up when finally taking it out!

The first picture of my neck belly button! Sorry if you are squeamish, getting a bit fed up of wearing scarves now though!

Apparently Catherine Zeta Jones also had a trackie! I have never noticed her neck dimple but sure as hell look out for it when I see her on tv or in pictures!

Part 25 - Me n my bonce

Great timing the physiotherapist I was assigned to was off on his holidays - how very dare he! But in his place I was give another lady who I must say was fab and we really had a good laugh as I would just tell her as it is! I was also assigned an occupational therapist for day to day task practice to resume my 'normal' routine. I was also given a speech therapist slot but fortunately (maybe not for others) by now my voice had returned to normal as well as a psychologist appointment! Really was that necessary or am I now completely bonkers? Apparently this was a routine appointment that everyone had and she was very impressed with how I had been and was continuing to deal with everything going on! So was no longer needed to attend 1-2-1 sessions with her. It was strange saying I'm going to the gym for a session! No not a pumping iron one like you expect, neuro rehab gym had parallel bars, plinths (bed type things) running machine a couple of exercise bikes and what looked like a set of stocks which was actually a standing frame! We had 1 porter for the unit who was lovely and always collected you with a smile in the wheelchair and comment on how well I was transferring to it! He would sit and wait with me in the gym awaiting Physio's to arrive. One of my first sessions was on the plinth with my replacement Physio and an assistant, I was sitting on the plinth using a gym ball to stretch when they thought lets see if I could kneel! OMG I could just about sit! So I laid down, struggled rolling over (still trying to keep my neck still as I now had a big hole in it!) then attempted the push up on to my knees! Sounds simple really! Well I had absolutely no strength (and I mean none, zilch, nada!!) both the physio and assistant had to help me and pull the top part of the plinth up so I could push on it! I think they then realised (as well as me) just how pathetic my strength was! How could I not kneel?! Something so easy? I'm never going to be 'normal' again and be able to get out of here! It was quite upsetting as when you don't try something but your mind is fine you think, yeah that's not a problem I can do that! Oh how different it is from thinking it to doing it!! So the belly button on my neck comment which your probably thinking what the? I had now no plaster on my tracheostomy and still hadn't looked at it myself when the physio's wanted to check it out to see how it was healing, I asked what it looked like and the assistant quite simply replied... It's like a belly button but on your neck! Wow I really have to check this out now so when I got back to my bed I went to the toilet to inspect my neck. Sure enough if looked like a belly button! Or as I later referred to it as 'me hole' but had to be careful where and how I used this term for obvious reasons!

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!