Where to begin! I know most people that have neuroendocrine cancer can relate as our story’s can be long.
From 2012 I had ongoing issues with my stomach from pain after eating, constipation and real discomfort, which resulted in constant back and forth visits to my GP over a period of the next six years. I was referred for ultra sounds and had blood markers taken; but nothing showed up. My symptoms continued and the pain got worse, I had moved and was constantly seeing a locum GP, it was never the same person and that didn’t help matters. I was told I had chronic IBS and referred to a dietician where I was asked to follow an eating plan, this resulted in me eliminating dairy from my diet, to which I continue to do still to this day.
In April 2018 I took time off my work as I could not do it anymore, the pain and discomfort in my stomach and my back was unreal which resulted in me eventually breaking down in my doctor’s surgery in front of the new GP. She agreed that investigations needed to be done as I could not continue to go on this way.With a big sigh of relief and many tears I knew someone was finally listening, and I am thankful to this day to Dr. Keenan.
I tried to explain the symptoms that I had and it’s frustration as it was smacking me right in the face, everyday! Slowly over the years I had lost all my energy and realised in that moment in the doctors that something was taking everything I had to give away and I needed to find answers to what was going on. Dr Keenan got routine bloods taken again and put a referral in for a flexible sigmoidoscopy (scope of the bowel) and an upper gastrointestinal endoscopy (scope of the stomach).
In October of 2018 I had both scopes, and I was told the same day that everything on the inside looked great nothing to worry about however, the consultant had noticed something was pushing in from the outside of my stomach. He had said not to worry, and he would refer the information back to my GP.
My doctor contacted me in a matter of weeks and before I knew it, I had a CT scan, this was in November 2018.In December 2018 I got a call at work on the last day before the Christmas break from the Gastroenterology consultant’s secretary at Forthvalley hospital. She told me my CT scan showed a mass on the outside of my stomach and asked me to attend for a second CT scan on boxing day to rule out any further masses / tumours.
A few days after this my consultant called me and broke the news that two more tumours had been found: one in my chest and another in my neck. He said I needed to go for a biopsy of the tumour in my neck in January to allow them to test what the tumours were.Between January and February, I was sent for a MIBG scan and had to carry out a 24-hour urine sample test.
After a month of worry I was told on the 22nd of March 2019 that I have Neuroendocrine Cancer, with three known tumours and an unknown primary.
My world collapsed as I was unsure like many people what this meant, with support from Prof Reed at the Beatson in Glasgow and my super nurse Irene Wetherspoon I was told that the cancer that I have is sneaky. My bloods and urine still to this day show nothing, my tumours are small and not aggressive.
I am so grateful to this day to my Nurse Irene for pushing me to make contact with Neuroendocrine Cancer UK. I am relieved to meet other people that understand and are going through the same thing as me. I am delighted and excited to be working with the amazing staff and ambassadors at Neuroendocrine Cancer UK to raise awareness of this rare cancer.
My hope as an ambassador is to continue to raise awareness and support other people dealing with this cancer.
Please reach out, this is an amazing team at Neuroendocrine Cancer UK there is loads of support and help available.
You can read meet our Ambassador team here ➡️ https://www.neuroendocrinecancer.org.uk/get-involved/patient-ambassadors/