Sunday, 30 August 2015

Double celebrations!

August has been a month of celebrating, with my 6 month transplant anniversary on the 17th and my 23rd birthday on the 19th I had plans to celebrate in style!

With a huge help from my sister, I arranged a murder mystery circus themed party to be held on the 15th of August! So I could play along, my sister took up the roll of host and organising of characters meaning I was as in the dark as everyone else as what the story was and most importantly who the murderer was! In the days leading up to my party, I gradually with the help of streamers, pompoms,  balloons, stripy table cloths and bunting was able to transform the downstairs of my house into a big top! I prepared the food of a circus, popcorn and pick 'n' mix along with cocktails in red cups!

On the morning of my party I made the finishing touches to the decor and then began to get ready into my character 'Ruddy Bijou' a male trapeze artist. I managed to get a jazzy leotard from the topshop sale for £10 and had some old dance shoes from my cheerleading days, finally I had made myself a blue cape as well as one for some of the other characters. To make sure I looked like a male, I decided upon a grand moustache and my hair in a mohawk of buns!

At 5pm my guests began to arrive, everyone looked so fantastic in their costumes, I couldn't believe what an amazing amount of effort they'd all put into them!
Alicyja aka Beatrice Castello assistant manager 
Emily aka Ruby Marbles the
 circus accountant turn undercover MI5 agent and gymnast!

Annie aka Ophilia Silke the contortionist
Milly aka Jezabel Rivers the clown
Imogen aka Delores Bones the clairvoyant 

Katie aka Ethel Bijou the snake charmer
Jess aka Pandora Bones the sword swallower
Ginny aka Betty Bojangles the ring mistress
Rachel aka the journalist Phillipa Roberts
Fiona aka catering manager Tiffany Sullivan
Joseph aka Thor Sampson the strong man
Katy aka The host
There was also Robyn who was a lion tamer Felix Leonarde, Jack my trapeze artist brother Sebastian Bijou, Mike a police officer PC Parker, Nile the stage hand George Plum and Laura the fire dancer Vivian Blaze who unfortunately I don't have photos of! Not many photos got taken on the night regrettably due to everyone being so engrossed in their characters and playing the game which I suppose is the most important thing! After about 3 hours of playing, the game came to an end and we all gathered to vote on the murderer as well as reveal if we succeeded in our own personal goals! I along with a number of others, correctly guessed the murderer as Sebastian Bijou my trapeze artist brother played by Jack! 
Revealing the answer to the mysteries
With the mysteries solved it was time for birthday cake! My mum very kindly made me this fantastically delicious lemon curd layer cake! I also managed to blow my candles out in one breath for the first time in my life thanks to these new lungs of mine! Another new experience thank you to my donor! 

Birthday cake!
Blowing out the candles!
I had the most fabulous birthday celebrations with all my friends, it was so much fun and another tick off my bucket list! I was truly spoilt with presents and cards, there was a definite theme of scented candles, crochet, Lush goodies, baking books and tea cups; all my favourite things! I feel so lucky that I was not just able to celebrate this birthday but celebrate it in full health, something I have never had before! By 1am I was exhausted so went to bed with a huge smile on my face! 

On Wednesday 19th my actual birthday and also my parents wedding anniversary, the 3 of us drove to Portmerion in Wales to have a celebratory meal in the castle there, despite the pouring rain the setting was lovely and they had a big open fire blazing to keep it warm and cosy inside! We had a lovely 3 course meal and I had a processco, elderflower and mint cocktail that was very refreshing!

Sat by the fire with my cocktail!
From Portmerion we drove to our caravan in Anglesey to spend some time by the coast! I really enjoyed the 4 days we had there even though it rained constantly, sitting in the van with a hot chocolate and my crochet kept me more than content! At 2pm on Sunday we left for what turned out to be the longest car journey ever to Newcastle. We seemed to be jinxed as every single road we needed to go on had horrendous traffic due to accidents or road works and it was all made worse by the torrential rain and thunder storms! We ended up taking that many diversions we basically toured the whole of the Great Britain before arriving in Newcastle at 11pm. Nightmare drive over, me and mum got our heads down for the night in the hospital accommodation as I had to be in clinic by 7.30am to have my bronchoscopy and biopsy. Me being me, I didn't even bother getting dressed in the morning but instead went to clinic in my PJ's, dressing gown and slippers, I got some funny looks and everyone I know in the x-ray and Lung function department were rather bemused! My theory was there was no point in getting dressed when I would be spending the day in bed after my Bronchoscopy due to the tiredness of getting up early and generally the groggy feeling you have after minor sedation. After my X-ray, lung function and bloods I got called into the screening area at 10am for my bronch, I was the first one, which I was happy about as the smaller the wait, the sooner I would get my cup of tea I was desperate for (I'd been nil by mouth from midnight until an hour after the procedure)! It took them 3 attempts to get a cannula in and that was with the help of putting my hands in hot water to make the veins appear; after 23 years of being stabbed my veins are far from happy about making an appearance and accepting a cannula in them! Anyway, cannula in, I then had the revolting banana flavoured numbing spray in the back of my throat, a splutter or so later all was numb and I was given a teeth guard to wear...I like my bronchs via my mouth rather than my nose! A few ml of sedation and I was relaxed and ready! I can't remember the bronchoscope going down my throat but I can remember my doctor taking the biopsies and doing some suction! All was over before I knew it and I was woozily wheeled up to the ward where I had to stay the night in case of complications... the nature of the procedure means a risk of bleeding or a collapsed lung. 

Post bronch thumbs up
Much to my displeasure I was no longer entitled to the special treatment of having my own room but instead was in a 6 bed bay with 5 70+ year old ladies. I got my head down sharpish for a few hours while mum and dad went to get me some proper food! A few hours later, they returned with a freshly baked croissant with ham and cheese from good old Sainsburys. Just as I was about to tuck in, Betty, in the bed next door, decided she was desperate for the toilet, so much so, she couldn't walk to the one at the end of the bay so needed the commode. To my absolute horror, the curtain was drawn round and Betty took her position upon the commode a mere foot from my bed. Curtains are not a substitute for walls, they are not sound or smell proof there is nothing I repeat NOTHING private about them. To say I was put off my food was an understatement, I was scarred for life. Things just kept getting worse, Mary opposite had an even more severe toilet problem and her curtain remained drawn for the majority of the afternoon. This was no place for a 23 year old to be and so as soon as was a plausible dinner time I escaped the ward to go and have dinner 'at the canteen'. In actual fact I went to visit my dads cousin and had homemade lasagne and cuddles with his new baby son, a million miles from the reality of hospital, it was a welcome escape! At 10pm I returned to the ward and much to my relief the lights in the bay were out and all the golden oldies fast asleep! I drew my curtain and got sorted for the night before placing on my trustee eye mask and iPod headphones to take me away from the reality of where I actually was! I had been dozing for a short 10 minutes when Betty pressed her buzzer, the nurses arrived to her to tend to her need which turned out to be 'I've just realised I have no socks on!'. I must say that did make me stifle a giggle! The rest of the night thankfully passed with no events that awoke me and so I managed to stay sleeping until 8am. The breakfast and tea trolly came around, I opted for a cup of tea that resembled dish water (future visits I will take my own Yorkshire gold teabags) and some rice crisps. A few mouthfuls of tea and one or two spoons of rice crispies later, my dad arrived to see me so I got ready pronto and we left the ward for a proper breakfast in the canteen (I actually mean the canteen this time)! A good bacon butty and proper cup of tea! We bought a paper on the way to clinic and sat happily drinking our tea and doing the crossword waiting for my mum to join us and to be called in to see my doctor to get my results! 

It was a really busy clinic so I didn't get to see my doctor until midday, it was worth the wait though as I was told once again I had zero rejection in all areas they tested and that he was very pleased with my progress over the last 6 months! I still have to attend clinic every month and will do until I reach a year post transplant in February. At my year appointment I will receive my final scheduled bronchoscopy and biopsy, I won't have any more unless they suspect rejection or an infection and feel a bronchoscopy and biopsy would help them identify this. 

I can't believe August is coming to an end, summer seems to have passed with the blink of an eye, I guess the rather un summer like weather has made it seem shorter also. As September arrives I look forward to launching a design business to raise funds for the CF trust and organ donation charities. For now I am enjoying a restful bank holiday tying up the lose ends of summer ready for autumn! 


An after note...
I had my first media appearance since transplant in an article for my local paper, The Leicester Mercury, here is the link if you are interested in reading it!

I am not doing any more media except for promotion purposes in the lead up to the release of the TV documentary I feature in in October.

Friday, 21 August 2015

The British transplant games 2015

On the 28th July I travelled up to newcastle at 4am to attend my 5month post transplant clinic review, as usual I did lung function, x-ray, blood tests and saw my consultant. All my results were good so my consultant was very pleased with me and wished me the best of luck for the weekend in which I was to take part in the transplant games!

After clinic we went to pizza express for lunch before driving even further north to stay at a bed and breakfast in Hexham. We decided that it made sense to stay up north and we would have a 2 day mini break before the games began on the 30th of July! We arrived at the bed and breakfast late afternoon and dropped our bags off before heading straight out again to visit my dads, mums, cousin and her daughter and granddaughter who lived in the area and whom my dad hadn't seen for years! My Dads extended family is huge, I must have hundreds of relatives! It was a really nice evening at we managed to chat the night away not leaving until 11pm, absolutely exhausted from the 4am start we'd had!
The bridge house B&B
After a good night sleep and hearty breakfast at the B&B we headed out on foot to the town of Hexham to explore! We visited Hexham Abbey, it was huge and the detail of design was incredible! Everywhere I looked was intricate stone or wood carving or huge multi coloured stain glass, it really was a stunning building! Pottering around the town we came across a vintage home wear shop that I adored, 4 stories of everything you can imagine from the past! I bought a set of Russian dolls a hand embroidered table cloth and a mini cup and saucer! On the opposite side of the road was a wool shop, I'd wanted some new wool to crochet with for ages so I managed to get my hands on some super bright colours for a new project! After a lovely lunch at the Hexham Abbey cafe we drove into the countryside to see Haidrians wall, I was rather disappointed, I had imagined something like the great wall of China but was met with the sight of a few mounds of rock, should have checked my history!
Beautiful russian Dolls in the vintage shop
On Thursday morning we decided to visit the nearby village of Corbridge before heading down to gateshead for the transplant games in the afternoon! Corbridge was lovely, full of more vintage shops and a patisserie full of mouth watering cakes! After a mooch around the shops we got some cakes and began the journey to gateshead!
Delicious cakes at the patisserie 
The whole of team Freeman were staying at the Ramada Hotel in Gateshead, when we arrived, the foyer was a hubbub of activity! Everyone adorned the white freeman kit and were beaming with happiness! At 5pm all 60+ athletes and supporters left the hotel to gather in Newcastle city centre where we marched through the streets in a similar way to olympic athletes parade around the stadium! Whilst waiting to set off I was asked to do an interview for local TV channel 'made in tyne and wear'. Here is the link to my interview, I appear at 5mins 30secs:

Team freeman ready to parade!
The atmosphere in the square where all the teams had gathered was of excitement and happiness! Each team in a different colour kit, music playing and lots of cheering, it was fantastic! I was given the job of carrying our team sign meaning I would be at the front of our team leading the way in the parade! At 6pm the marching band started up and the parade began! I felt so proud marching through newcastle with my team showing how fantastic organ donation is! Members of the public clapped and waved as we marched along! The parade ended at the City hall where the opening ceremony took place. The ceremony involved the passing of the transplant sport flag from Boltons home team to Newcastle/Gateshead home team (us) and the lighting of the transplant flame. Joe McEldry also performed a few songs which was good! After the ceremony we all headed back to the hotel and had a big team meal, it was great to meet all the other members of my team and swap stories of our transplant experiences! I was given lots of good advice for my recovery and future which I have found very helpful!

After a good night sleep and lazy morning me and my parents got up for breakfast, I had a full fry up to give me as much energy as possible for my cycle event later that day! I was competing in a 5km cycle ride at Leazes park by St James stadium in Newcastle, they had set out a 1km lap that I was to complete 5 times in a time trial. When we arrived at the park my nerves began to jangle! Everyone had lycra on, proper racing bikes and even had rolling roads to warm up on and there was me in my nike leggings and trainers a cheapo tesco helmet we'd bought 2 days before and my sisters 10 year old mountain bike. But I was there and I was determined to complete the course. It was the taking part that counted to me, I was only 5 months post transplant and only 3 months out of hospital, being there was an achievement in itself.
Keeping warm in my hoodie pre-race!
I had lots of supporters there to cheer me on, my parents, cousins, great aunt and fellow teammates as well as the lovely Oli Lewington from the CF trust! The support was needed as the course was far from easy, the lap had a large hill for half of it that seemed to climb forever, my legs felt like jelly by my 3rd lap and it took so much inner determination and sheer grit to complete my final 2 laps!

Concentrating on cycling, lap 3 I think!

When I finished relief washed over me, I could feel my heart beating in my ears and my mouth was parched! I was handed a bottle of water and laid on the grass getting my breath back and let my heart slow into normal rhythm! With the help of some of my team mates supporters I walked back to the start area to find my parents and have a much needed massage from the physios!

Leg massage on my tense muscles!
The massage worked wonders as I awoke the next morning with no aches or pain whatsoever! I was relieved about this as I had my 3km speed walk to contend with that day! It was called the 'donor walk/run' that my mum and dad would be doing with me as it was an open event for both recipients and people on the donor register to take part in. I sped walked the entire 3km along the Quayside  except for the last 200metres in which I sprinted as fast as I could across the millennium bridge to the finish line! The 3 of us finished with a respectable time of 21 minutes! Everyone that took part got a medal for their efforts!
On the gateshead Quays with our medals
On sunday I was supposed to be having a relaxed day with no events and just enjoy myself watching the athletics at the stadium! However, at the start of the afternoon it became apparent the 100m relay team was all male and with it being a mixed event needed a female! I volunteered to fill the space so the team could compete! I was second in the relay and was given a straight bit of the track to run which made it easier! It was an exciting event to take part in and made me realise I'd like to participate in more track events next year!

Receiving the Batten! 
The games culminated in a gala dinner at the Sage Gateshead (the big silver bubble looking building by the tyne bridge!). It was a great final evening to celebrate the weekends events! I was nominated to carry the transplant sport flag on to the stage along with 2 other teammates to pass on to the Liverpool team who will host next years games! It was a proud and poignant moment! By the end of the weekend I had made lots of new friends from all walks of life who have been brought together by the gift of life that is transplant! I can't wait to compete in next years games where I aim to have a racing bike and enter more events! A big thank you to Vicky our team manager who without the weekend would not have been possible for team freeman! She's our star!