Julie Scates, Christie patient
A second chance
In March 2014 I was 39 and my big birthday was approaching. My partner Steve and I had lots of great plans, but little did I know that a terminal primary peritoneal cancer that had spread to my ovaries, liver, bowels, diaphragm and omentum (the layer of peritoneum that surrounds abdominal organs) was going to thwart those plans and change my life forever.
I am from Belfast in Northern Ireland and live there with Steve and three children now aged 24, 18 and 13. I always had a hectic family and work schedule up to Nov 2013 when my health deteriorated.
I was classically misdiagnosed with irritable bowel syndrome and then ovarian cysts. I struggled with pain for the next few months with multiple stays in hospital. Eventually I had the shocking diagnosis that I had an advanced and aggressive stage 4 cancer. My world was turned upside down. I was taken to theatre for surgery and an attempt was made to remove the tumours. It was unsuccessful and the prognosis was very poor giving me just weeks to live. I asked for a second opinion but they had already done this during my surgery and it was agreed that it was too advanced to proceed.
My immediate thoughts were how ‘how am I going to tell my children that I am going to die’ and ‘how can I leave them without their mum’. Panic stricken we knew we had to work fast if I was going to have any hope. I remember thinking at the time if only I could have 6 months to try and make a plan for my children's future and prepare them for life without me.
It sent my partner Steve into overdrive. He spoke to Target Ovarian Cancer who recommended The Christie in Manchester and another UK hospital. We also researched clinics in Germany, USA and Mexico. I was desperate and we needed to move fast. We sent them all my scan and pathology reports. They all came back with treatment options and a plan, but only we could decide what path to take and that was difficult as we knew nothing about this rare form of ovarian cancer and Dr Google was deadly.
It was a telephone consultation with Professor Gordon Jayson at The Christie that convinced me to fly to Manchester to meet him. He believed he could help but needed to see me. I was on a flight within a few days for an appointment in his clinic. I walked in frightened, in excruciating pain, covered in a rash from an allergic reaction to the pain medication I was on, but fiercely determined to do whatever I needed to.
Within minutes and I mean literally minutes, his expertise and compassion was evident. He is a humble man but you can tell how passionate he is about his work and the patients he cares for. I look back on that first appointment and how my mind was firmly made up, Professor Jayson and The Christie was the right choice for me. He gave me hope in what I had been told was a hopeless situation so I went home to Belfast, packed a bag and my treatment commenced within a few days.
Like myself, many people consider travelling to Europe and beyond for treatment but I feel blessed to have found an oncologist in a specialist centre like The Christie within the UK. I was a complex case and no doubt a challenge for any oncologist. I've had chemotherapy, radical surgery, more chemotherapy and have been able to access two different clinical trials that have not only prolonged my life but have given me a good quality of life with my family for the last three years and continue to do so.
It was daunting at first for my family as they worried about me travelling for treatment but some of them have accompanied me on my chemo trips and they have seen firsthand the care I receive when I'm at The Christie and can reassure everyone else at home that I'm in great hands. I have also made special friendships with other patients at the clinic.
I may travel many miles to get to The Christie but I'm always made to feel at home. Each and every department I visit is always so upbeat, caring and accommodating - the clinical trials team, scans, ward staff, porters, blood test nurses, x-rays staff - too many to mention individually as I've been all around the hospital! Everything I need is under one roof here. I was even able to get my wig and headscarves on site! I have referred other women from home and other parts of the UK who have ovarian and other types of cancer to The Christie for a second opinion and they too have experienced the excellent care and expertise available.
My clinical nurse specialist Catherine Rogers has been a rock throughout this. I was struggling with the incurable disease and terminal illness terminology that had been used to describe my cancer previously. She advised me to think of it as a chronic illness and this has changed my mindset and helped me cope so much better. The Christie team has supported my mental wellbeing as well as my medical needs.
I have had to reprioritise my life and fortunately have been on many adventures and travelled to amazing places since being diagnosed with cancer. I'm determined to LIVE with cancer, making the best of every day, rather than letting it dictate my happiness.
People ask me how I cope with the travel from Belfast to Manchester, but the care and expertise I get from The Christie outweigh the effort it takes to get there. Only when you have walked a journey like this can you truly understand the positive impact on you and your loved ones of being able to have complete faith and trust in the medical team whose care you are under, and that is why I will continue to travel.
All through this journey I've always looked for the silver lining and Professor Jayson and The Christie have been that for me. He recently told me in his own words that it was a privilege to be able to look after his patients but I, like any other women I have met in his clinic, feel privileged to receive the care provided by him and his wonderful team. Thank you.