We Love Emily. This is Her Story.
Our good friend Emily isn’t very well. Her family and friends have rallied around to organise an amazing Valentines Day Ball and Auction. We are privileged she has openly shared her story and here is your chance to bid on fantastic prizes in support of Sarcoma UK.
I could write pages. But that’s really not the point. After a ghastly few months of misdiagnosis and dismissals, I was told I had leiomyosarcoma in late August 2014. My daughter was about to start school in Ramsbury, and I was told I was unlikely to see her through reception year. It was devastating news, but we quickly learned not to trust a prognosis – my specific form of this disease is so rare that there are no certainties – not even close. Since then, we have had ups and downs through two major surgeries, radiotherapy, chemotherapy, targeted therapy, microwave ablation (tumour frying from the inside) and even a return to work when we thought it had all gone. This comes on top of a multitude of scans, tests, biopsies and more appointments than I can remember to manage my treatment and its inevitable side effects. Currently, there are at least a cricket team’s worth of tumours jostling for some game time in my liver and bones, for which I’m on a heady cocktail of immunotherapy/chemotherapy as part of a clinical trial at the Royal Marsden in London. Sarcoma UK has provided my family and me with invaluable help and support over the last four years.
For me and my particular brand of nerdery, the specialist nurses staffing the Sarcoma UK patient support line have been a sounding board and guide to help me find the best treatment path. For many others, they provide the only source of clear understanding for a complex and rare disease. The charity is a small but perfectly formed bunch of experts who work tirelessly to improve the lives of people with this devastating disease. I would very much like to show my appreciation for them through fundraising and am grateful for your support.
What Is Sarcoma?
Probably the most common question when people first hear the word sarcoma. Short answer, it’s a type of cancer. Cancer occurs when specific cells stop doing their job and ‘go rogue’ – ignoring the body’s built-in systems that usually prevent them growing uncontrollably and causing damage.
Cancers are named according to the type of cells that misbehave and cause the original growth (the primary tumour). Sarcomas are a specific group of cancers that begin in connective or supportive tissues (much less common than carcinomas – where the rogue cancer-causing cells are derived from organs, eg lung/breast/liver/prostate/skin). Sarcomas are rare and often aggressive. There are over 100 types of sarcoma; their differences depend on which cells cause the initial tumour, and each is treated and managed accordingly. Being uncommon makes sarcomas difficult to detect and diagnose, difficult for patients to find out about and access the right care, difficult to find effective treatment for because sarcomas have historically been less of a focus for clinical research, and difficult to treat consistently between patients because there is limited evidence available to help guide the few specialist doctors in the UK.
The primary treatment for sarcoma is always surgery, because it is rare and aggressive and there are really no effective licensed treatments. Once sarcoma has spread to different parts of the body from the original site (metastasized, giving rise to secondary and tertiary tumours) it is usually incurable, and life expectancy is pretty horrendous, even with treatment…at least that’s what doctors and the Google will tell you.
Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma and campaigns for better treatments. It is the only cancer charity in the UK focusing on all types of sarcoma. Their mission is to amplify sarcoma awareness, inspire involvement, and fund ground-breaking research to transform the lives of everyone affected by sarcoma.
Sarcoma UK is a relatively young charity, founded by Roger Wilson CBE, a sarcoma patient. The charity receives no government funding and relies solely on voluntary donations and the energy and imagination of fundraisers.
Donating to Sarcoma UK
All profits from this Valentine’s Ball and Auction will go to Sarcoma UK, to help fund vital research into improving lives of sarcoma patients and their families.
Anyone wishing to make a further donation can contribute via our JustGiving site: https://www. justgiving.com/fundraising/marlboroughsarcomaball
The Amazing Auction – 15 February 2019
Pre-event Silent Auction
This is not limited to attendees. If you are interested in any of the brilliant auction lots, or donating via the justgiving site please email Marlboroughsarcomaball@yahoo.com, putting the lot number and the word BID in the subject line
In the email body, include:
o Lot number and title
o Maximum bid
o Phone number, email address and contact details.
• Silent auction closes at midday on Friday 15th February.
• Highest maximum bid will be the start bid on the night.
• Winning non-attending bidders will be contacted on Saturday February 16th and payment requested.
• Email bids are seen as a commitment to purchase.
Redrow Homes for sponsoring print, hire and set-up costs; Barnes Coaches for providing transport from the villages, Sean Moir and his band, the Monkey Dolls; the Kingsbury Quartet (our lovely friends Emma Gardner and Laura Ingram-Hill, and their friends Robert Napier and Sue Birley); Adrian Travis Photography; Alice Capener, Jo Steel and Jane Godfrey, who have given up their time to work for the evening; Sue Brady Catering; Five Star Security; Majestic Wines; Ramsbury Brewery; Waitrose; The Roebuck pub for donating the proceeds from their weekly quiz; Hedge Rose Florist; Morrisons supermarket; Aimee Perry & Reg Marsh who have given up their entire evening to set up and remove the candelabra, which were donated by stressfreehire; Copy Colour Ltd, for printing these programmes. All of the individuals and businesses who have kindly donated to the auction and fortune boxes. The truly marvellous Elisabeth Dodds who has artworked this brochure, Lindsey Heer who proofread it, Trudi Taylor and Alex Lambert for being coach monitors, and Trudi for her advice and help with the auction. Everyone who remains standing to help us clear up. A special mention to Ian Fitzgerald and Salar Brock from Rick Stein, and their colleagues, who, in addition to providing an auction lot and the delicious canapés, have provided help and invaluable advice to the organisers, and have volunteered to work on the night. Truly above and beyond. Thank you.