Our Story

I am a 33-year-old wife, mum of one and cancer sufferer. Our lives changed forever in March 2017 when a trip to my GP with a minor cough resulted in a diagnosis of an advanced form of a rare and complex cancer, Adenoid Cystic Carcinoma (ACC). The week of scans, biopsies and consultant appointments that led to my diagnosis was utterly terrifying and heart breaking – it is difficult to describe the depths of despair, and the sheer strength required not to fall into the deep dark precipice that comes with facing such a diagnosis.

With no other symptoms, and being a young, fit and healthy non-smoker, it was a huge and horrid shock to us all. The cancer had taken over my right lung and surrounding areas, and within 2 weeks, I underwent a 9-hour operation to have my entire right lung removed, as well as areas of my diaphragm and surrounding tissue. I was in intensive care for 10 days following complications, and finally returned home bruised, battered and breathless, to my amazing husband James and beloved one-year old daughter Olivia a week after that. What followed was a relentless battle to overcome the excruciating pain, physical limitations and draining anxiety, whilst doing my best to be mum to Olivia and shield her from it all.

The challenge with ACC is that it does not respond to chemotherapy and there is no known cure for the disease. We were advised that the cancer would likely return, but there was no way of telling when or where that would be. I would be monitored very closely in the meantime. I threw myself into intensive therapy to regain my fitness, increase my remaining lung capacity and secure my independence. The early progress was encouraging, but by summer 2017 pain once again ruled my life. Three months later and following several rounds of torturous scans and results meetings, we were dealt the devastating news that I had already suffered a relapse. I had a tumour pushing up against the nerves in my spine which was to be treated with radiotherapy. Shortly after this, we received our heaviest blow to date, the ACC had spread further and I have several tumours growing in my remaining lung. 

Given what is known about ACC to date, this discovery leaves us in the impossibly difficult situation of searching for treatment options which we hope will hold off the progression of cancer for as long as possible. One of the hardest aspects of our journey has been the lack of knowledge around treatment options. The continuous contradictions in opinion from the few leading ACC specialists about my treatment plan has been both daunting and demoralising at times. Together with our families, we have worked tirelessly over the last year to research and assess all the treatment options available. It has been incredibly difficult and immensely stressful to be tasked with deciding what will give me the best chance of slowing the disease, and finding the right team of experts to work with.

Through our research, we identified ACCRF who are looking to change all this. They fund research into life prolonging treatments for people with ACC, initiate new projects for the research agenda, and support doctors with ACC experience. They provide hope to so many ACC sufferers worldwide, and the importance of hope can never be underestimated.