FOR MY MUM, OLWEN written by daughter, Rhiannon, and her Dad
Please note: This story was written by the patient’s daughter following her mother’s passing and is shared in her memory. Readers may find some parts of her journey emotional to read.
Olwen’s Primary Site: Gastrohepatic Ligament Ki-67 1-3%
Treated at: The Royal Preston and The Christie Hospital
Diagnosed: August 2019
Treatment: Monthly Octreotide injections
–
–
Diagnosis and early days
In May 2019, Mum had a scan to investigate possible internal bleeding. She had been feeling fatigued, lacking in energy, and had a very low iron count. The next day, our local hospital, The Royal Preston, phoned Mum asking her to come in, and we suspected bad news to be called back in so soon.
A Dr Blower told Mum she had an abnormal mass that had been found in her abdomen, probably cancer, and that she would be referred for urgent tests and scans.
Everything changed in that moment. Nothing is ever the same. Obviously, Mum was upset but remained outwardly calm. Over the next three months, she had many tests and scans, including CT, endoscopy and ultrasound scans.
In August 2019, Mum, Dad and I attended The Royal Preston Hospital oncology department. There she met Erin, her clinical nurse specialist, and her appointed oncologist, Dr Ferreira. They delivered the life-changing news that Mum had a Neuroendocrine Tumour. It was approximately 4.5cm by 2.5 cm and had hidden itself in her Gastrohepatic Ligament.
We struggled to understand what a NET was – although it was explained to us. It is still hard to understand, especially when you’ve never even heard of it. Mum liked to research, and she used her internet skills to find out what this was, and what it meant to us as a family.
Soon after diagnosis, Mum was unable to work, and an urgent referral was made to The Christie Hospital in Manchester for a PET Gallium Scan. New specialists believed the abdomen was not the primary source, but nothing of any other significance was found, which was good news.
Living with NET
In January 2020, Mum attended Royal Blackburn Teaching Hospital. There she spoke to Dr Kauser, a consultant surgeon specialising in gastro-tumour removal. She was confident they would be able to remove the tumour, and Dr Kauser explained that Mum would have to have three months of Octreotide injections beforehand to counteract the enzymes that could be released when the tumour was removed.
Mum had three Octreotide injections and tolerated them well, and in March 2020, plans were put in place for surgery. Then came COVID and her operation had to be postponed. This would subsequently be the catalyst for further and more complications to beset Mum.
The Oncology Department advised Mum to continue with Octreotide injections. Mum knew there were many patients on the injection living quite normal lives with few side effects. The injection would subdue secretions from the tumour and stunt its growth. Mum was content with this.
Mum seemed ok on the outside. She would never tell the world about her health issues. But inside things were beginning to deteriorate. Mum began putting on a lot of weight, and despite going to Weight Watchers and being referred to The Weight Management Unit at Aintree Hospital, her weight was increasing, as were her hypoglycaemic episodes.
Consequently, other weight-related conditions became apparent. Obstructive Sleep Apnoea, Atrial Fibrillation and very reduced mobility. The hypoglycaemic events were now becoming more regular (especially at night) with dangerously low blood sugar levels.
Further findings
Although an Insulinoma had been mentioned previously, Mum at that time had displayed no other symptoms, so this was put to one side. Mum had CT scans every six months, but her NET was slowly increasing in size. All apparently within the 10% levels of acceptance.
In December 2024, Mum was referred to The Christie Hospital for investigation into her varying blood sugar levels and investigation of her NET being an Insulinoma. Mum met the wonderful Dr Saf Adam, Consultant Endocrinologist. She was very impressed by how he explained things. Dr Adam told Mum he would get the answers and diagnosis, and everything pointed towards an Insulinoma – a rare and unusual form of neuroendocrine tumour.
In March 2025, Mum was admitted to The Christie for a three-day fasting investigation. The results confirmed she had an Insulinoma. Surgery was now the only option to stop the weight gain, low blood sugar levels and improve Mum’s quality of life.
In June 2025, Mum was seen by lead surgeon Dr Jandar. He was amazing, and he assured her that although risky, he could do the surgical operation to remove the tumour. Mum was naturally apprehensive and had many reservations but would have gone ahead with it. Unfortunately, that decision was taken out of her hands by the anaesthetist, who declared surgery too risky.
In Autumn 2025, Dr Jandar remained positive and started trying to locate a specialist Bariatric Anaesthetist who would do the surgery. Sadly, time was running out.
By Christmas 2025, Mum’s health was declining. In February 2026, she was admitted to Preston Hospital with low oxygen levels and a severe chest infection. Sadly, she passed away on 25th February 2026. We were told her NET had ruptured, causing severe haemorrhaging.
Life prior to NET
I want you to know a little about my mum. When she was 18, she met a young man in a nightclub, subsequently got engaged and married him. That young man was my dad, John. They were happily married for 33 years with lots of memories made, and we both miss her terribly.
My Mum was wonderful. She was my best friend and literally knew the answer to anything. She was 55 years old and should have had many years ahead of her. I feel lucky to have spent 28 years as her daughter.
Mum had a passion for exploring new places and travelling. One of her happiest places to visit was Walt Disney World in Florida. She has passed on her Disney passion on to me and her granddaughter.
By Rhiannon
Written 28 May 2026