Hilary’s Story

Hilary Bell from Ballyclare was first diagnosed with oesophageal cancer at the age of 46. Over the past two years, Hilary has been on a emotional and physical rollercoaster, but through always maintaining HOPE, Hilary is now thankfully coming out the other side and starting out on the road to recovery.

Here, Hilary shares her story to help raise awareness of the disease…

“At the age of 46, whilst on a trip with my husband’s work in November 2022, I became aware that swallowing food seemed to be a bit difficult and something I had not struggled with before. During the lead-up to that Christmas, the swallowing got progressively worse, and initially, I thought that this was due to me not sitting down and taking my time to eat my food as I was always on the go. I then contacted my GP and explained my symptoms and I was prescribed other antacid medication they red-flagged me for an endoscopy but informed me that this could take 6-8 weeks. Symptoms from the start knowing what I know there was a lot of heartburn over a prolonged period that was treated by my GP with omeprazole and then changed to esomeprazole. I also had soreness for years around my right shoulder blade.

“From there, I ended up choking on a prawn on 5th January 2023 and drove myself to A&E as I was choking and couldn’t breathe properly. After waiting from early afternoon until that night, I was initially kept in for an endoscopy but was sent home in the early hours of the morning due to a lack of beds. A few days later, I was contacted by Antrim Hospital to say that I had an endoscopy appointment the following Friday.  I didn’t think it was going to be anything sinister, and my hubby initially had a meeting in England and wanted to cancel it, but we talked him into going, and my eldest daughter was going to take me as I planned to get sedated for the procedure. 

“The endoscopy was then completed, and I asked the nurse in recovery did you see anything to which she replied “Can you not remember what the consultant told you? I’ll get him”. When he came back, he pulled the curtains around and explained that he couldn’t get the camera past a tumour and was more than 95% sure it was cancer. He then took me into a side room where my daughter was waiting and explained it to us both.

“From that moment it all felt very surreal, the next few weeks felt like a whirlwind of phone calls, hospital appointments and scans. I then got the confirmation news upon an appointment on 26th January 2023 that I had oesophageal cancer. To be honest I hadn’t heard much about that particular cancer before. When I looked online it seemed like an older person’s disease. I was very inquisitive and eager to find out more about what happens from here in terms of treatment, surgery, etc. My eating at this stage was very restrictive and I was even struggling to swallow my own saliva. I was then brought into the hospital the first week in February 2023 to have a jej fitted for nutritional feeds. 

“After this and within a few more weeks I met the Oncologist, he explained that there was an option to get an operation called Esophagectomy and I started Chemo and Immunotherapy (Nivolumab) treatment.  Initially, I was to have FLOT Chemo but during my first session I had a seizure reaction within a few seconds of my first infusion and my Chemo was subsequently changed to Folfox. I then got a further CT scan before I got a date for my operation. I received a letter to attend the hospital on 18th April to see my surgeon, I assumed it was regarding my operation. My surgeon was there along with the clinical specialist. He asked if I had received the results of my last CT scan which I hadn’t. He explained that the cancer had spread to lymph nodes outside the operating area which meant that I was inoperable. In response, my husband asked what does this mean and what happens now? Unfortunately, it meant I was terminal, and I would be given palliative care along with the chemo and immunotherapy I was already receiving. My husband started crying uncontrollably and asked, “What are we talking about, how many years?”. The surgeon’s response was “most probably months not years”. I then asked both the surgeon and nurse if there was HOPE. To which they replied, “Yes, there is always hope” and I remember saying back “I would hold onto that”. The worst bit about that day was breaking the news to both our daughters Megan and Lauren that their mum was terminal. The look on their faces tortured me for days. I felt my life was imminent, as a close family we were all so emotional. 

“In May of that year, I was hospitalized due to pain from my cancer and I was put on a syringe driver to control the pain. I spent over 3 weeks in hospital trying to stabilize the pain. I eventually got discharged with the syringe driver and continued to get chemo and immunotherapy. I had 12 rounds of chemo and then continued with the immunotherapy which would be 2 years in total. By the last few rounds of chemo, my body started to feel the effects and I had to delay the last round as my body wasn’t strong enough to continue. Although I wanted to finish and complete all 12 rounds and not feel like a failure. 

“My eating during these months was virtually non-existent and I was totally dependent on feeding through my jej. I was advised to get a stent fitted in my oesophagus to help me swallow. Even if I got a drink, it would be a real treat. The stents didn’t really work for me. The tissue above them would overgrow or they would slip which meant that they were not serving their purpose within a few weeks of being fitted. I had 11 stents fitted at different stages during these months up to December 2024. At one stage I had 8 stents in my oesophagus at once. (I think I broke the record). The team of oncologists and staff were amazing at Belfast City Hospital. They didn’t know what to do with me as it wasn’t ideal to change stents regularly as this can cause more health problems around the oesophagus area. 

“In November 2024 we had an appointment at Belfast City Hospital. It wasn’t one of our routine appointments and I didn’t think or worry about it as I already had received the most devastating news in April the previous year. We met with the consultant and nurse specialist, and they explained that they had a meeting and the immunotherapy treatment had been very effective and the lymph nodes had reduced down to the normal size similar to any 48-year-old female and they would like to offer me the Esophagectomy. We couldn’t believe what we were hearing, after 2 years of living with a terminal diagnosis. It felt like I was being given a chance to have the gift of life. 

“In December 2024, I had lots of appointments with the surgical team regarding the operation I was going to have. I was told by the surgeon they were not totally sure if they could do the Esophagectomy which was a plan A, but they also had a plan B called a Colonic Interposition. To be honest it didn’t bother me what operation they were going to do if it meant I could simply drink and eat a little food. I was just so blessed to be offered the chance of an alternative to the terminal diagnosis.  

“In January 2025, I got a phone call to confirm that I was being admitted to BCH for scheduled surgery on 23rd January, but first I had an appointment with the endoscopy department the week previously to remove as many of the stents, which were currently in my esophagus. Well, they did and removed ALL 8 STENTS!!!. Operation day was now upon me, and I was ready for what was ahead. I had a sense of calm leading up to the operation. When I woke up in ICU the surgeon and my husband told me that they were able to carry out plan A, the Esophagectomy. I spent four nights in ICU and four nights in the surgical ward and home on the 8th day. Yes, It’s major surgery but I was so grateful to be given the opportunity of surgery. The recovery is slow, It feels like I have to retrain my brain and body on how to eat, which is the hardest part as I haven’t done this in 2 years.   

“A few weeks later we had an appointment to meet with our surgeon and when we got there, he brought in the clinical specialist nurse and asked if I had family with me. I thought “Oh no here we go again”. He started to explain that they had received the pathology results back from the tumour in the oesophagus and the lymph nodes that he removed during surgery, and there was no evidence of cancer. He has put the result down to the effectiveness of the relatively new drug immunotherapy (Nivolumab). We were overwhelmed and my husband had tears of joy. This was the first time in 2 years that we had received good news. My first port of call was to Facetime our daughters Megan and Lauren to tell them the news. What we saw as the end has now turned into a new chapter in our lives.

“I’m still recovering from this operation, but I can honestly say it hasn’t been as bad as the pain I suffered from the numerous stents I had fitted, the not eating and drinking and the worry of the terminal diagnosis. The hardest part of the last 2 years was not being in control and in what felt like an unfair fight. It was one hell of a roller coaster but being optimistic and the faith we have as a loving family – that’s where ‘HOPE’ grows.”