In December 2009 I was diagnosed with Adenoid Cystic Carcinoma after just turning 38. I was now a single mum to 3 wonderful kids, but my youngest was only 8yrs old.
Since being diagnosed, 10 years ago, I have undergone 56 separate operations / procedures which included having half my palate removed, a third of my top jaw, sinus, adenoids, nerves and lymph nodes. Radiation and Hyperbaric Treatment totalling over 70sessions have also meant that I spent most of the last 10 years in Doctor’s surgeries or hospitals. But the surgeries aren’t over.
During my first group of surgeries, my medical team did a fantastic job, rebuilding my palate using skin, muscle and tissue from her left arm and right hip and an artery taken from my left arm to feed blood up to her new palate.
The financial cost, even with private health and income protection insurance has had significant impact on my family. And now nearly 5 years on and over $45,000 out of pocket, I am at the point that I have to delay further treatment because I just don’t have the funds.
During, my journey, the loneliness of having rare cancer has had a hard personal impacted too. It’s not just the medical profession constantly saying to you “I’ve never heard of your cancer”. It was also not being able to talk to people who understand. Being diagnosed with rare incurable cancer, that will allow you to “Live” for a long time, but constantly having to battle the impact of the treatment, is not something people understand readily.
Ten years on, most common cancers are in remission. How do you explain going through a daily struggle for ten years to people when they are only aware of what they “know” about cancer and assume you should be getting better. How can my family and friends understand when doctors don’t.
The creation of Without A Ribbon Inc came about because of this. As the Founder of this Charity, I decided that I did not want people to have to go through this journey alone. And with the help of this Charity, others in the future, will have the support and understanding they need.
Well that’s my story so far. I plan to be here for a long time to come, and with your help, to build a legacy that helps those diagnosed with rare cancer for decades to come.
Desiree Fraser (Desy)
President / Founder
Without A Ribbon Inc