I am Siobhan and I am a long-term patient (20+ years), cancer charity founder, patient advocate, wife and mum of two teenage boys & hairy daughter, (aka our dog Pixie)
Cancer and long-term health issues are not like what they show in the movies, it is a marathon effort physically and mentally. Everyone deserves quality support around them regardless of what stage they are at. Research shows time and time again what a difference it makes when a patient feels supported and how this leads to much better outcomes.
The reason I started this business, actually starts way, way back when I was 25 years old when I was diagnosed with a hereditary cancer syndrome called M.E.N. Type 1. This genetic mutation was passed down to me from my father who died from it when he was 44, and I was 3 years old.
Over the years I have undergone numerous surgeries to remove parts of organs that were growing these tumours, and I will face more surgery and treatments in the future. But through all this, it has given me a unique perspective on life, because there is no cure or preventative surgery, but I have learnt to get on with life and when needed I focus on getting the right the treatment at the right time.
When I was first diagnosed in 2003 and facing my first surgery, I really wanted to talk to other patients about their own experience, especially on how to recover well afterwards. Out of frustration with the lack of support and information about this type of cancer I started and built up an organisation that focused on helping patients with Neuroendocrine Cancers all around New Zealand. It was called Unicorn Foundation New Zealand and it continues to be a thriving national charity, (now called Neuroendocrine Cancer Foundation NZ).
In 2015 we fundraised to establish a key type of diagnostic scan called a Gatate PET-CT for the first time in New Zealand. This scan has also helped thousands of Prostate Cancer patients too. Over the past 7 years we lobbied government agencies to gain funding for a key treatment called PRRT which is now available to all New Zealanders. During that time we also set up a national support service for patients. I am super proud of the progress we made in a short amount of time. From my own experience I remain passionate about helping other patients get support and the best possible outcomes.
During any health challenge, or life changing event, its important to remember that you can’t fix what they are going through but if they know you are there for them - it will help them immensely.
Care Box is here to make it easier for you, to be there for them.
Neuroendocrine Cancer Research Articles I have assisted with :Consensus-Derived Quality Performance Indicators for Neuroendocrine Tumour Care
Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals