Jussie sails with Clipper 11-12

Jussie sails with Clipper 11-12
I sailed the last leg (8) in 2012 - USA,Nova Scotia,Ireland,Netherlands & UK. Travelling 4,000 miles, approx 22 days at sea, with 4 races in this leg.

Saturday, 29 December 2012

2012 What a Year!!

So the year is nearly over, and WOW what an eventful year indeed. So many achievements, awards, medals and so on. It has been worth it amongst the health blips over the year. Having a transplant is a life extender, but not a cure as it comes with it's own issues to deal with and fighting when the immune system is low. However, I would not change anything for the world - as it HAS given me life and longer days, months, and years. I still do not take anything for granted, and realise each new day IS a bonus, and one I am so grateful and appreciate my donor for this opportunity.

I decided to mention some items in the months whereby things have happened as follows, and then summarising at the end. Like Jerry Springer's final thoughts - though mine without all that drama ;)

Awarded as a Chelmsford Sports Ambassador 2012-2013

Clipper 11-12 - started my challenging round the world yacht race (leg 8) over 4,000 sea miles

Clipper 11-12 - completed my leg in the sailing race and making history as the 1st woman with a double lung transplant to have sailed the Atlantic Ocean.

6th Year Post Double-Lung Transplant - celebrated at sea (well, was too ill to do so, so had a welcome home sailor tea party and celebration of life back home and with thanks/memory to my donor).

British Transplant Games
Silver Badminton Doubles
Bronze in:- shot put, javelin and discus

Awarded the European Lung Foundation Award

Awarded Winner in the Active Chelmsford Sports Personality of the Year.

Awarded Winner in the Harefield Hamsters (from my hospital that specialises in transplants) Special Award for my sailing in the Clipper 11-12 race and raising Organ Donor Awareness across the globe

Awarded as a Runner up in Essex Chronicle Sports Star of the Year.

Awarded as Top 5 Daily Mail Inspirational Woman of the Year Award, which had over 1,000 entries. I felt very humbled to be recognised for all my achievements and to meet Samantha Cameron at No:10. My previous journal I wrote more about this amazing experience.

Final thoughts
So, as you can see it really has been quite an eventful year for me. The best news was learning that LAM disease has not spread to my brain, as initially the doctor looking into this, thought I may have a tumour or a stroke as LAM is a circulatory condition affecting various organs. All this due a regular eye test, that followed up with more investigations showing my left eye re: it's circulation had slowed in one eye and looked very different with photos taken to my right eye. Anyways, besides that and being poorly for a couple of months after my mammoth sailing experience...another lucky year for me and I'm still alive!!!!

2013, I hope will be another great year, as I look forward to the World Transplant Games, in Durban South Africa (July). I will be training very hard and even if I come home without a medal, I know I would have given it my all, and simply being there IS a winner! Also, will I finally get to complete my auto-biography that is simply taking a lifetime to complete!? fingers crossed xx

A few mini challenges no doubt throughout the year too and my 1st one being on 6th January doing a 4K run with a lady from Essex Boot Camp (EBC), called Karen. And then another event with EBC later on in the month of February. I know I wrote a little bit about EBC in my last blog (at the very end of it), but I cannot recommend how amazing this is for all round fitness and well being. Please check their website here thanks. I wish words could thank enough all the instructors that I have met so far, and the people that go too - what a load of lovely people! Thanks again to the directors Glynn and James.
Also, thanks to all the other coaches Michael Kilbey, Brian MacKenzie, and to Chelmsford Sports Athletic Centre and Riverside Ice & Leisure Centre for the use of their facilities.

Almost time to round up my final journal for 2012. I do still think about all the friends I have lost this year and over the years, never forget, but time helps heal though. I just wish more people would sign the Organ Donor Register to help lives for the future. And I wish my friends still waiting - that no matter what organ they are waiting for, the wait isn't long. xxxx

I wish everybody good health and happiness, and hope all your dreams come true. Please live life and relish each day, it truly is beautiful and I am nervous and excited knowing that July 9th 2013, will be my 7th year post double lung transplant. I hope for good health and to make another year.

Lotsa love to you all, and to all the continued support from each of you's xxx

Roll on 2013!!! xxx

Tuesday, 18 December 2012

Inspirational Woman Finalist

My Award

Well, here we go finally blogging about making Top 5 Inspirational Woman of the Year (Daily Mail) after thousands of entries. I have to thank my parents who nominated me on the closing day of the competition. Little did they realise, that my story would see me make a finalist! When they told me, I was shocked and couldn't believe it and that I would get to go to 10, Downing Street and have lunch with Samantha Cameron. To say I was humbled and very overwhelmed would be an under statement. There are many inspirational women across the UK, I still couldn't believe one of them recognised was actually me!

  For 8 years I have been campaigning as most people know on Organ Donation and LAM disease, one of the world's rarest diseases that brought about my double lung transplant. I have been communicating with people all over the world through social networks sites and email/letters and so on to give hope and inspire people. My website that was set up in 2005 was for just that purpose, as I remember all those years ago when first diagnosed with LAM - full name being, lymphangioleiomyomatosis, that there is no cure and you die. I was horrified and initially set up a website to let people follow my story as I fought painfully for my life. I always believed I would survive and would get a transplant (only in my dark days after being in a coma did I actually want to give up). However, my inner strength and determination after 15 lung collapses, 3 week coma, learning to walk again did I know I HAD real FIGHT in me. The surgeon also said, technically I was dead inside as there was no lung tissue left and hundreds of cysts destroyed both my lungs. I set about telling my story in the local press, then became national news. My website grew across the globe and eventually having over a million hits and messages from people across the world. Suddenly, everybody knew about me. I started this blogger site as a follow on from my website, and I have been journalling on here now for many years.

For the years that followed until this present day, I have continued in the media UK + Globally raising awareness, and even when on holidays find myself in newspapers/magazines/TV and so on encouraging the 'gift of life' and educating people and medical teams about the rare condition LAM. I have also raised over £10,000 for charity.

I always set about a 'self' challenge each year that I am still alive to achieve a new goal. This saw me travel through Europe on my own just one year after my transplant, competing in a Bupa Great South Run, training for the British, European and World Transplant Games winning over the years :- 23 medals (gold, silver and bronzes). Learning various new sports at the Transplant Games which I've competed  in from:- sprints (100m, 200m and 400m, long jump, badminton, volleyball, squash, javelin, shot put and discus).

This year (2012) was my most gruelling challenge entering the Clipper 11-12 Round the World Yacht Race (leg 8) sailing over 4,000 sea miles. Also, making history as the first woman with a double-lung transplant to sail the Atlantic Ocean. In Chelmsford, Essex  where I live, my achievements were recognised and I won Sports Personality of the Year.

So, seeing all this in writing and having a video made of my life (I need to find out how to transfer the disc given onto You Tube - so you can watch too, which was shown to around 300 celebrities in an evening event), actually made me cry. I guess I have achieved so much and done a lot to perhaps make me an Inspirational Woman. But, I am still very humbled and just happy with the recognition and being in the newspapers again will only continue my plight on awareness for the future.

Here I am with a make - over on the day :)
Here with the other finalists left to right :- Pam, Andrea, Shelley, Andrea and Me :)
It was a very early start travelling to London for the awards event on 12th November and we all were to meet at the Marriott Hotel and for an overnight stay.

I set about resting up in my room, and heard a knock on the door......wow! A box of goodies complimentary arrived for each finalist.

On arrival Sanctuary treat box

Oh look at all the goodies inside

I was to get changed and meet all the finalists and before I knew it, we were all being whisked away in a taxi to No:10 Downing Street!!!!! It was a rainy day and a short walk to get into No:10. I couldn't believe still this was happening! After many security checks - the big black door opened and we were led up some flights of stairs and posing for a photographer with Samantha Cameron herself. A lot of photos were taken inside and none allowed to be used or published. But, I am just using the photo that was used in the Daily Mail article and taken by Murray Sanders.

Day spent at No:10

As part of being a finalist, George at Asda sponsored all our clothes - and I got a day and evening outfit all free, not bad - eh!

It was all a busy day and after returning back to the hotel, dress rehearsals were needed before the evening. Next, having our hair and make-up done, it's a hard life ;)

Make over time and I was asked what 'look' I would like, I replied dramatic and big eyes and that I am not afraid of colour and lots of glitter..such a girly girl.

Transformation in progress......

Whoop...starting to become smiley and dramatic.....

oh so moody look ;)

Mum and Dad

Nearly finished....

Eh Voila

And above captures the final image :)

With all the finalists again....

 The empty room being transformed ready for the night. It was amazing how many staff were running around moving tables, chairs and decorating the room for the 300 guests that would be arriving in a couple of hours!

Emma Forbes running through her presenting schedule before the evening.

Rehearsing with Emma Forbes and James Cameron

Seeing how to be when get presented with award - dress rehearsals. It was amusing as Emma Forbes did want to say the full illness' name instead of LAM and I had to help her a lot. It wasn't pitch perfect but definitely better than most people can attempt ;)

The paparazzi set up ready for all the celebrities to arrive, and I wasn't sure where everyone was so just pretended to be a photographer and hung out waiting for all the stars to arrive, lol, naughty me!

Loose Women TV Presenters Carol McGiffin
Michelle Heaton Singer
Jenni Falconer TV Presenter
Olivia Grant Actress
Amy Williams Olympic athlete
Darcey Bussell Strictly Come Dancing
Darcey Bussell and Charles Worthington

Ailona Vilani Strictly Come Dancing

Amanda Lamb TV Presenter

So after snapping many photos - ooooh what fun, My Dad rang to ask where I was!!! Oops - so I found my way to a smaller room waiting until everyone could move to the function suite. I did enjoy being paparazzi for some time, and I did take many more photos of other celebrities, but, just uploaded a selection for here.

Some information of each of the finalists left to right, firstly Shelley and her charity called Grief Encounter. Shelley became a councillor working with troubled children , helping them deal with the complex process of bereavement. In 2003, Shelley started her charity to help children deal with the loss of a parent or sibling. It now provides counselling for hundreds of children a week, supports 3,000 young people a year and offers workshops, fun days, residential camps and more. Shelley, a mother of four, has become a leading expert and author on childhood grief and works tirelessly to raise public awareness and understanding of the subject.

We were told that were all winners, but that an overall winner was needed to be named as overall, and that was Shelley as above. I was very humbled by each woman's inspirational story and well done to Shelley!

Claire was diagnosed with breast cancer aged 38 in 1993. After going a mastectomy, chemotherapy and radiotherapy the cancer went into remission. Clare then joined The Women's Environmental Network and began campaigning for the removal of harmful carcinogens from the environment to reduce cancer rates. In 2004, after her cancer returned and she needed more chemo, Clare started her own charity, Breast Cancer UK. To date, Clare has helped ban the harmful chemical BPA from babies' bottles in the EU and the pesticide Lindane, among others.

Pam helps with her care and commitment in providing holiday homes for children suffering from life threatening illnesses and their families. Pam's 10 year old daughter Hannah lost her battle with cancer and died from Hodgkin's disease. As a tribute to her brave daughter, Pam decided to continue to raise money in Hannah's name. Since then she has spent her years fundraising to open 2 holiday homes on the South Coast, called Hannah's Holiday Homes, to provide a comfortable place for families with seriously ill children to relax and break the monotony of endless hospital appointments.

Andrea set up a centre called The Drop Inn a centre to help and educate local young people. In 1999 complaints about teenage behaviour causing damage to property and upsetting the local community in Belper, Derbyshire. Andrea took matters into her own hands and asked the local gangs what would keep out of trouble. The answer came back clear: something to do and somewhere to go. Within a year, Andrea had opened The Drop Inn, a youth centre providing education, training, work experience and activities for teenagers. On the first night, 80 turned up and since then 5,000 have passed through Andrea's hands, many of whom would not have secured a first job or passed exams without her help and dedication to the project.

Each woman I met and talked with was definitely inspirational in their own way, and it was an overwhelming array of emotions listening to each story and watching their video on the night.

My video being showed on 2 large screens to an audience of over 300
My Mum talking about me on the film footage

My Dad next to me whilst laying in a hospital bed

It was a blur really when my video was being shown......I covered my face as I tried to stop myself from crying. I saw footage that I hadn't seen from taking part in the Clipper 11-12 Round the World Sailing race, whereby I finally arrived in Ireland after crossing the Atlantic Ocean and was inconsolable with tears. That part of the race was extremely tough for me and becoming ever so sick and unable to eat or drink much. I nearly wanted to give up....but fought to get to the end of this part of the race.

Then I heard my name and it was time to collect my award and to have it presented by Sarah Storey - Team GB athlete!!

Sarah Storey Olympic athlete
I was not going to let this opportunity pass me by and whilst talking on stage, I said something along the lines of, that there are over 300 people in this room...if everyone joins the Organ Donor Register that will go to save over 2,000 lives for the future!

Phew...food all consumed, awards presented, and Shelley winning overall inspirational women of the year, it was time to see if I could get some more photos  of  the stars (thanks to my Dad for snapping them). There were so many celebrities and just not enough time to picture everyone, but I certainly tried my best x

Kristina Rihanoff  from Strictly Come Dancing striking a pose with me 
Charles Worthington Hairdresser liked my hair :)
Craig Revel Horwood - Strictly Come Dancing

Let's Dance

Darcey Bussell with Dad and I

Meera Syal Actress

Michele Knight Astrologer
Kara Tointon Actress
Anna Richardson TV Presenter

Emma Forbes TV Presenter
Jenni Falconer

And that's a wrap.......

And so there we have it, an event that I will never forget and always treasure. Recognition for all I have done and continue to do, and I will never stop. The next day we were treated to a day at The Sanctuary Spa in Covent Garden, WOW, what heaven and absolute bliss! The time to return home......

I am so grateful for every day that I am still alive and now focusing on training for the World Transplant Games in South Africa (July 2013). It is going to be a tough period training, and recently I joined a bootcamp called, Essex Boot Camp to help boost my fitness and help my lungs. Thanks to the directors of the Essex Boot Camp (Glynn and James) for their support. I have done many challenging things as you can see - and it doesn't get any easier for me, I have to keep pushing and persevering and remembering to breathe as I push my lungs to the max with about 60% lung function. 

I wish everyone a Happy Christmas and Happy festivities, and I hope to journal one more time before the year ends. Much love to you all  in the meantime and stay smiley :) xx