The long journey to diagnosis: Rev. Gary Millar’s stomach cancer battle

In late 2021, Rev. Gary Millar was busy with work preparing to celebrate the most magical time of the year. However, privately, he was suffering very badly with acid reflux and a constant horrendous taste in his mouth.

Gary, who suffers from the Primary Immune Disease Common Variable Immunodeficiency, was under the care of immunology and respiratory doctors in the Royal and City Hospitals. Having tried all the usual reflux medication and getting no ease, Gary was told at one appointment that he would “just have to get used to living with it”. Eventually he was referred for an OGD but advised that he could be facing a long wait.

Gary decided to use his private health insurance and booked a consultation with a gastroenterologist. After barely being in the room five minutes, Gary was told he was “too fat, drunk too much tea and didn’t have a healthy diet.” The gastroenterologist did however agree to carry out an OGD. However the NHS appointment arrived first, so Gary went with that to get the procedure done sooner.

At the appointment, they took some biopsies and gave Gary a report to take home, telling him they would be in touch. Two weeks after his OGD and just two weeks before Christmas, Gary received a phone call from a gastroenterology doctor at the Royal, who broke the shocking news to him that he had stomach cancer.

Recalling the moment, Gary said: “At that point, I nearly dropped. I reached the phone to my wife Gillian, it was so much of a shock to try and take it all in, just hearing the word cancer.”

After that call, things fell into place very quickly.

He had a CT scan on Christmas Eve morning, followed up by a phone call that afternoon to book him in Mr. Harris for the week after Christmas.

At that appointment, Gary met with a team who would be with him on his journey, including Macmillan nurses, a dietician and a physio.

Gary said: “It was all very efficient. Mr Harris explained exactly where the cancer was but did say that he wanted to do a laparoscopy.”

This revealed pre-cancerous cells in the upper part of his stomach too. After this discovery, Gary made the decision to have his entire stomach removed.

One month from that initial phone call informing him he had cancer, Gary was booked in for his gastrectomy.

Speaking of his feelings at the time, Gary said: “It was mentally exhausting, just so many mixed emotions. I was working full time, it was coming up to Christmas, so outwardly I was having to portray happiness and joy, whilst having all this stress and worry going on inside.

“I was still trying to understand how this happened. I didn’t smoke, I wasn’t a drinker, we ate a healthy diet with lots of vegetables. I knew I was at increased risk with my immune deficiency but I don’t think I was expecting it to this extent.”

Despite living in very strict isolation, Gary unfortunately caught Covid in January 2022 which pushed his surgery back seven weeks to March. During this time, Gary was taking anti-biotics and working at improving his fitness levels. Due to his respiratory complications, he had to be as physically fit as possible before going under anaesthetic.

After his total gastrectomy on 11^th March, Gary was delighted to learn that the cancer hadn’t spread and the surgery had been curative. Due to his compromised immune system, Gary was unable to undergo any chemotherapy pre or post op.

Within 6 days, he was back at home to begin his journey to recovery.

His immunology and respiratory consultants stayed in constant communication with the gastro team throughout the entire process.

Whilst Gary has nothing but praise for the standard of care he received at hospital, he does suggest that having someone available to help with mental health would make for complete multi-disciplinary care.

Five months after the operation, Gary began to suffer from severe depression. He explained: “I don’t think I realised just how much of my life revolved around food, it was almost like grief, like I was grieving my old life and all the things I had taken for granted.”

During his whole journey, Gary credits his “faith” and his wife Gillian as being his “main motivators” when it comes to helping with meds and food. A former physio, she has helped him with exercises as well as changing the family’s diet to help Gary adjust to his new ways of eating too.

Gillian also encouraged Gary out on lots of walks, he jokes that he thinks they visited all the coffee shops in the North Coast!

However, it has taken a toil on Gillian and their family. “The emotional toil has had a huge impact on other members of the family. My wife witnessed me losing basically one third of my body weight which still has an impact on her. She still says some of the joy I had before has gone.”

From the start, Gary has been open and transparent with his family and church leaders, which has helped him to share his story. He believes this has been a big help too. This has helped Gary in ministering to others in similar situations.

Gary is now back working full time, enjoying life and living every day to the fullest. He still suffers from acid reflux and vomiting but he says: “In the beginning it took some getting used to. The sense of embarrassment, explaining in restaurants why you are only ordering a child’s portion, having some restaurants point blank refusing to serve you this, planning journeys around toilets etc.

“But you do get into a routine. You begin identifying triggers and know what to avoid. Most days you wouldn’t even be conscious that you don’t have a stomach, it’s only really when you sit down for a meal and see everyone else tucking in.”

He does still allow himself a tasty treat every now and then, a filled soda from Bob and Berts which he shares with Gillian!