Allison & Paul

Paul was 53 and we were only a few years into our relationship which was wonderfully warm, loving and were both so looking forward to future plans. It was all taken away from us.

Paul started going to the GP frequently

In September 2024, Paul started getting stomach pains and back pain. From seldom going to the doctor, he became a frequent attender. As the months progressed he was losing weight rapidly and was frequently sick after eating. He was at the doctor more or less weekly. An endoscopy showed he had Barrett’s oesophagus and the GP kept saying his symptoms were typical and to change diet, try different things.

Paul had lost probably around 3-4 stone by Feb/March 2025. The doctor checked his PSA and referred him to urology. He was diagnosed with prostate cancer but it was just above the limit of “watch and wait”. I asked the doctor if it was the prostate cancer that was causing all his issues, but he said categorically “No, this is definitely not coming from the prostate”.

Something’s not right

It was very difficult to get a dietitian to speak to him but after speaking to the dietitian a few times and she recorded his weight, she said she was emailing the GP to raise grave concerns over his weight loss. We went to A&E several times at different hospital locations and each time waited all day to be seen, but the doctors there just seemed to put it down to the Barrett’s oesophagus diagnosis and discharged him. It was so frustrating. Even I knew there’s something not right here. I remember saying there must be something else, but was always dismissed.

Each time Paul went to the GP, he was told they were waiting on word back from gastroenterology. Eventually I asked Paul if I could help and phone the hospital to chase them along. When I phoned the hospital, I was told there was no referral to gastroenterology. There may have been an email chain but no actual referral.

Paul was diagnosed in A&E

At the end of April 2025, Paul went to A&E again on his own and saw the same doctor he had seen the previous week or two ago. The doctor asked, “have you been drinking alcohol over the weekend?” and was going to discharge him. Eventually for some reason he said, “I think we will do a CT scan”. And that’s when life changed forever. I’ll never forget that moment, a large mass at the duodenum was found and they took us aside to say he had pancreatic cancer.

He was admitted into hospital and after a week was to be transferred to the gastro and biliary specialists some distance away. Time was of the essence, but for 3 days we waited on ambulance transport. By the third day I was frantic and phoned the hospital gastro specialist nurse who intervened and suddenly the ambulance turned up. But the driver wasn’t able to take him, because he was on his own and Paul was on morphine. It was so frustrating and upsetting. Only after I phoned the gastro nurse again in desperation did the hospital arrange for a health care worker to accompany the ambulance and a taxi brought her back.

There was nothing they could do

Paul was jaundiced and had a stent fitted. They were going to try and get that all under control with a view to starting chemotherapy to reduce the mass, and “if” they could do that, then they would consider surgery. So, we were naturally desperate to get this all done as quickly as possible.

He was discharged after having his stent and was supposed to gear up for the chemotherapy. However, the jaundice returned and his blood tests showed he wasn’t well enough for chemotherapy. He was told in July that there was nothing they could do. He was terminal.

Paul was discharged back home

Paul’s pain was difficult to control and we had a number to call for additional medication in between the district nurse visits. They did do a fabulous job overall and I am very grateful to them. However, it wasn’t without fault, and to have to raise issues at such a difficult time is not an easy thing to do, and it was upsetting and frustrating at points.

I miss him greatly

Sadly, Paul lost his life in October 2025 and I miss him greatly. There were so many things that went wrong and delays that may have changed the outcome, or delayed the spread of the disease. I realise it is a very difficult disease to diagnose, but his care was poor. The gastro specialist nurse was amazing. The Macmillan benefits lady was also amazing. But an awful lot could have been done better. I’d have needed to have a much bigger voice to overcome the blocks put in front of us.

I’m glad I was there to advocate for him

My closest friend is amazing and is a nurse. Although not a cancer nurse, she prompted me and told me what to do, ask for and say right from the beginning. I followed her lead as I told her his symptoms and what professionals were saying to us. Without her, this might have been an even worse journey for us.

Although we found each other later in life, I am glad I was there to advocate for him. I wish I had complained more and got better, faster results through. But we both felt blessed to have each other, just devastating that it ended too soon. My advice to any family struggling is to really push for answers and for the best care.

March 2026