Jane’s husband, John, sadly passed away from liver cancer in 2022. Jane reflects on his long journey with diabetes, liver disease and the challenges they faced in accessing care, particularly during the COVID-19 pandemic.
My husband was diagnosed with type 2 diabetes and high cholesterol more than twenty years ago. Despite trying to control his blood sugar through diet and tablets, nothing seemed to work, and he quickly had to start insulin. His blood sugars were always difficult to manage. Some years later, he experienced chest pains and was admitted to hospital. Tests showed high cholesterol and triglycerides, and although investigations were carried out, no angiogram was done until much closer to when he was later diagnosed with cancer.
At the hospital cholesterol clinic, doctors found abnormalities in his liver. A scan confirmed non-alcoholic steatohepatitis (NASH) and cirrhosis, and he was told this put him at high risk of developing liver cancer. He was advised to have six-monthly scans and to lose a stone in weight, which he did. Unfortunately, when the COVID pandemic began, all follow-up and specialist care from the liver clinic stopped. There was no further contact until much later, when our GP became involved.
Getting help through the GP surgery was extremely difficult. He tried repeatedly to use eConsult, but it kept telling him to ring instead. When he called, the lines were always busy, and he could be 20th or 40th in the queue before the system cut him off. When he finally spoke to a GP by phone, he was told to stay on his tablets for another three months before they would start working, but his symptoms did not improve. We received no hospital appointments, which we assumed was due to the pressures of COVID.
In January 2020 he developed severe indigestion, abdominal discomfort and bloating. I told him he needed to see a doctor, and he managed to get an appointment with a new GP who prescribed proton pump inhibitors and asked him to come back in six weeks. That follow-up appointment in March was cancelled when the country went into lockdown. He kept trying to contact the surgery, but the phone lines and online systems made it almost impossible. He could not go in person because of restrictions, and the medication was not helping, so he eventually stopped taking it.
By mid-2020, nothing had changed. The GP continued to repeat the same prescriptions, and we could not reach the liver consultant at all. I felt helpless because I could not advocate for him in person, and everything had to go through phone or online systems that rarely worked. After months of this, in July 2020, he phoned NHS 111 and was told to go for testing. He had a stool test for blood followed by a scan, and shortly afterwards a junior doctor phoned to tell him he had hepatocellular carcinoma — liver cancer. It was an awful way to hear such devastating news.
A consultant appointment was arranged soon after, and at first the plan was for a liver transplant. He underwent radiotherapy and ablation to shrink the tumour. The first round did not work, but the second did, and the tumour reduced in size. In August 2021 he was referred to King’s College Hospital for transplant evaluation, but there were concerns about his diabetes and other health factors. By the time he was ready for assessment, the tumour had grown again and he was no longer eligible. Other treatments were ruled out because of a low platelet count. He tried a tablet prescribed by the oncology team, but the side effects were so severe he could not continue. It might only have extended his life by a few months, and he chose instead to spend quality time with family and friends.
By late summer 2022 his symptoms began to worsen again, and the focus turned to palliative care. He wanted to be at home, and we did everything we could to make that happen, but it was very hard. There were long waits for prescriptions, and delays in getting hold of district nurses or the palliative care team. On one occasion, he became too weak to get out of his chair, and the urgent care team took too long to respond. We had to intervene ourselves to get help.
Eventually we sought a hospice placement. While in the hospice, I had been awake for several nights with almost no sleep, and my sister-in-law came to sit with him while I tried to rest. The hospice staff said they could not say how long it would be at the end and that it could be up to three or four days, but as the morning went on I could see he was deteriorating, so I called my family to come. He passed away in the hospice, with family present.
My husband’s story shows how easily people with complex health conditions can become lost in the system, especially during times of crisis. He faced every challenge with courage, but the disruption to care and communication during the pandemic made his journey so much harder than it should have been.