Yes, Prime Minister @sarcoma_uk #sarcoma #cancer

15171321_10154845936530087_901751787727357388_n

I am writing to you from a Virgin train after a little jaunt to the Capital. I’ve been working in our head office near Gatwick Airport, blah blah blah, that doesn’t interest you at all.  In between my hectic work schedule I managed to squeeze in a visit to Number 10.

About 4 weeks ago I received an invitation for an evening with the Prime Minister, Theresa May.  I eagerly accepted and waited in anticipation for the night.

Here’s how the story goes
I set off from my hotel in the freezing cold, dress on, hair done, invitation in hand, wait, wait, wait, wait – I forgot my photo id! I traipsed back to the hotel scolding myself for being unprepared.  After a short train ride I finally made it to Westminster and was awed by the sight of Big Ben lit up.  I was so excited.  I called my friend Lesley to meet her but no answer (I could guarantee she was in the pub!) so I headed to Downing Street and joined the queue with other sarcoma patients, medical experts and Sarcoma UK staff. After a thorough security process, I was at No 10!

No photos so we had to store our phones at the entrance.  We were all escorted to a drinks and canapés reception on the first floor which spanned two very impressive and plush rooms.  Paintings of previous Prime Ministers and Monarchs covered the walls. After mingling, meeting new people and being asked “hey, are you dizzytix? I follow you on Instagram” three times, Theresa May entered the room.  After a few pleasantries she headed to the microphone and spoke about sarcoma and why No 10 had chosen Sarcoma UK as their official charity.

In 2015, Chris Martin who was the Personal Private Secretary to the Prime Minister sadly passed away after being diagnosed with sarcoma. Obviously his friends and colleagues wanted to raise awareness and much needed funds for vital research.  This has catapulted Sarcoma UK from a small charity into the spotlight as a major player in driving change for sarcoma patients. WOW.

In the words of our Prime Minister:
We’ve been honoured to support Sarcoma UK as the 10 Downing Street charity of the year. Chris is a much missed figure who was hugely popular amongst his colleagues here and the whole team has been very proud to continue his legacy, helping raise funds and awareness for Sarcoma UK, the only charity of its kind in the UK.”|

It was lovely to hear Theresa May talking about the things that they have all been doing to raise funds for Sarcoma UK, from Tough Mudder (she made it clear she wouldn’t participate in that one!) to fancy dresses and bake offs. It made me realise, these are good hardworking people who are trying to do something amazing in memory of their colleague and friend and its completely irrelevant what your political stance is.

I am truly honoured to have been invited last night and to be in a room full of such wonderful and amazing people made it extra special.  I’d like to thank Sarcoma UK, not only for the invitation, but for the support and work that they do for people like me.

Richard Whitehead
The Paralympian Gold Medallist Richard Whitehead is the patron of Sarcoma UK.  He volunteers tirelessly for the charity and even completed 40 marathons in 40 days…(yep!) and last night, he was awarded the Point of Light volunteering award for his services to the charity. This award recognises exceptional volunteers who make a difference in the lives of others. He truly is an amazing and humble man who wants to help and improve things for us sarcoma patients. Well done and well deserved Richard.

To read Sarcoma UK’s write up please click here.

15267660_10154845926265087_4901329059608824609_n

 

Good news Friday #sarcoma 

Scanxiety was high today, well it was an X-ray but it x-ray and anxiety don’t work.

I had a mid term x-ray which was clear. My next scan is in February so another three months to enjoy life.

Hopefully, we can squeeze another few trips away in that time…. #YOLO

Four years #sarcoma @sarcoma_uk


16th October is a date which will be forever etched in my memory. 
Today marks the fourth anniversary of having my sarcoma removed. I went to theatre at 8am and came out six hours later and seven and a half pounds lighter. Oh and cancer free.
The last four years and been one hell of a journey but as I’ve said countless times before, at least I’m here to tell the tale. I’m thinking of all the people who aren’t here to do so and of those who are going through treatment. 

Love to you all x

Statistics @sarcoma_uk #satcoma #cancer

Four years ago, my GP told me to cancel my holiday to Thailand (unless it was the trip of a lifetime….!) as she suspected a tumour in my leg. A week later, I was diagnosed with a sarcoma and given a 5% chance of survival past two years. 

Hello world – 4 years later . Thank you to my amazing family and friends for supporting me. The biggest thanks goes to my gorgeous husband.
Love to you all X

Hair today, gone tomorrow #sarcoma #Clatterbridgecancercentre @ashtonsims26 

This week Jeni from the Clatterbridge Cancer Centre asked me to be a patient representative for them at an event in Warrington this week. Of course I said yes. This hospital has saved my life three times and is still looking after me.  

Two ladies, Lorraine and Gill had decided to shave their heads to raise funds for this amazing hospital. The bonus was that Warrington Wolves player Ashton Sims was going to be the guest of honour! 

Lorraine and Gill raised over £5,000 WOW!!  They even looked fab with shaved heads! I looked like Uncle Fester when I was bald🙂 Well done ladies. 

Scroll down for the video of Ashton shaving their heads.

Six monthly scans

Well today was the results of my first ever six monthly scan. 

What a wait

It was sheer hell sat in the waiting room at The Linda McCartney Centre. It was heaving, standing room only. I arrived early as usual but had an hours wait from my actual appointment time – as I’ve said before this us fine as it means a patient needs Dr Ali’s support like I’ve needed it in the past. After the agonising wait, with me thinking the worst, I heard the wonderful words out of Dr Ali’s mouth “it’s good”

My scan was clear. Free of the sarcoma which has desperately tried to cling to me for almost four years. I was relieved but exhausted-it certainly takes it’s toll on you being worried! I’ll certainly be celebrating at Vicky & Mikes wedding tomorrow.

F*ck you cancer

This week was sad as we said goodbye to Paul O’Neill after living with leukaemia for the last 11 months. Here I am releasing a message tied to a balloon and yep, it’s in the colours of Saints and it was worth holding the red ballon for you. Good night God bless Paul X