Lisa & Lewis

My fiancé, Lewis, was told that he potentially had cancer in A&E on the 31st October 2020, after months of bowel issues, feeling bloated, uncontrollable blood sugars, vomiting and weight loss.

We had both been in touch with the GP many times regarding the symptoms and had to push for Lewis to have some bloods taken. Lewis was deaf and struggled with wearing a mask, so all the GP appointments he had were conducted over the phone.

His diabetes nurse spotted a problem

Lewis was diabetic, so he was already under the care of the diabetic nurse. He started taking insulin, but his blood sugars were still very difficult to manage.

We were in regular contact with the diabetic nurse about how much insulin to take. It was during one of these appointments that the nurse looked at Lewis’s recent blood results and realised something wasn’t right. She let the on-call GP know, and the GP phoned Lewis immediately and advised him to attend A&E.

We got the news it was pancreatic cancer

During this admission to hospital Lewis had a CT scan, which showed a tumour on his pancreas and in the liver. He had a biopsy taken from the liver, which showed metastatic adenocarcinoma. Lewis did not want to know how much time he had at this point, so we didn’t ask.

He was also diagnosed with an infection caused by the cancer. He remained in hospital being treated for the infection with intravenous antibiotics. Eventually, Lewis had a midline catheter fitted into his arm so that he could continue to take his antibiotics at home.

He hoped to have chemotherapy – but he had lots of problems

Lewis was due to have FOLFIRINOX chemotherapy after completing his course of antibiotics.

However, the day after the chemotherapy assessment appointment he woke up early, feeling very short of breath. I had to call an ambulance. Lewis had had a large pulmonary embolism, and had to stay in hospital for oxygen and blood thinning injections.

While he was in hospital, he was seen by the palliative care team, who helped him with his increasing pain. He also spoke to them about his wishes for treatment, including a ‘DNR’ – a decision not to be resuscitated if his heart were to stop.

When he came home, Lewis was referred to a local hospice and they advised us on increasing Lewis’s pain relief and starting to take Creon® for his digestive issues.

His health got worse quite quickly

Lewis began to deteriorate quite rapidly. His legs swelled, his appetite was poor, and he was also becoming confused. His mobility decreased to the point that I had to get a hospital bed for him to use at home, and he was unable to leave our first floor flat as he could no longer manage the stairs.

Because of how weak he was, hospital transport was arranged to take Lewis back to hospital. The plan was to have his PICC line sited and then start chemotherapy straight away. However, when he got there they found that his calcium level was elevated and his haemoglobin was very low. They gave us the news that he was not well enough to have chemotherapy.

I asked how long he had, and they said maybe a week. He was admitted to hospital again that day, which was a Friday, and given a blood transfusion. He quickly became bed-bound and incontinent. Lewis passed away in hospital the following Thursday, aged 37.

Sharing our story

I got in touch with the nurses on the Pancreatic Cancer UK Support Line via email a lot throughout Lewis’s diagnosis and after he died. They helped me understand what was happening to his body. As a nurse, I needed to understand why the cancer was affecting him in the way that it was. They helped me ask appropriate questions to the oncology team and specialist nurses. Also, it was just someone to talk to about my worries and fears.

I want to share my story because to lose anyone to cancer is a tragedy but Lewis was just 37. Because of his age, his GP wasn’t concerned about the symptoms he was showing until it was too late.

Lewis and I had hoped to get married and live together for a long time. I don’t want this to happen to anyone else, so if sharing Lewis’s story will help someone realise they might have symptoms, or have their symptoms recognised earlier regardless of their age so that they can have surgery, then it’s worth it.

May 2022