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!!!