Caring for someone with a terminal illness

Theadora - Interview 38

Age at interview: 45

Brief outline: Theadora's mother developed jaundice in 2004. After doctors diagnosed pancreatic cancer she had chemotherapy, which continued intermittently almost until she died in 2007. She found complementary therapies, such as reiki, helpful and changed her diet.

Background: Theadora is a senior civil servant. She has a partner and is co-habiting. Nationality/Ethnic background' White Jewish.

Audio & video

In 2004, Theadora’s mother looked jaundiced. She was 64 years old and had previously had trouble with her gall bladder, which had been removed. Theadora’s mother went to see her GP, who immediately referred her to see a consultant at the hospital. She was seen within two weeks and was told that she had a problem with her pancreas, probably pancreatic cancer. After numerous tests the doctors decided that the tumour was contained within the pancreas, that there were no secondary tumours, and that she would be able to have a Whipple’s operation. The family was glad to hear this and hoped for a cure.

Theadora’s mother went into hospital to have surgery, but the consultant told her in the hospital the night before the operation that he had looked at the scans and that unfortunately he could see some secondary tumours in the lungs, so the Whipple’s operation could not be done after all. Theadora’s mother felt that the surgeon had made the wrong decision and was very upset. Theadora and the rest of her family felt devastated by the news of the cancelled operation, and were very angry. Theadora insisted that the consultant should see her mother the next day to decide on future treatment. She told him that the family might consider making an official complaint about her mother’s treatment.

The doctors inserted a stent into Theadora’s mother’s bile duct, to relieve the jaundice. As months went by the stent sometimes slipped out of place so it had to be replaced. Over the two and a half years of treatment Theadora’s mother had five or six stents inserted, sometimes during an endoscopy but sometimes through the abdominal wall. The procedure became more complicated as time went on and as yet another stent had to be replaced.

Theadora’s mother was given gemcitabine and other forms of chemotherapy. She liked to feel in control and did a great deal of research on the internet and made sure that she was included in clinical trials when appropriate. She often felt sick, tired and unwell during the chemotherapy, but she had weeks when she was not having chemotherapy so was able to lead a reasonable life and even go away on holiday to France. Some of her treatment was within the NHS, some was private and some was funded by research grants.

Another side effect of chemotherapy was hair loss, but Theadora’s mother had some excellent wigs made. She was determined to continue treatment for as long as possible because she had a strong desire to carry on living. She did not have chemotherapy for the last few months of her life, but apart from that she had treatment most of the time.

Theadora’s mother attended a support group for people with cancer and while she was there she tried various forms of complementary therapy, such as reiki and massage, which she liked. She tried aromatherapy but did not like that treatment. She also read a great deal about diet and changed her diet and virtually became a vegan. She aimed to make her body alkaline rather than acid. Theadora knows that there is no evidence that this diet helped her mother, but she points out that her mother had been given a prognosis of just six months, but she lived for two and a half years after the diagnosis.

In 2007 Theadora’s mother became more unwell. She had oedema and looked very frail. She walked into hospital to have yet another stent inserted into her bile duct, but the doctors did not manage the procedure, which by then was experimental surgery. She stayed in hospital for the last three weeks of her life. Theadora and her sister had to feed her mother and help her with other things, but her mother was always mentally aware of what was going on and able to communicate and give consent to procedures. She was in discomfort and pain at times so was given strong painkillers, including morphine, which she could self-administer via a pump. She only had morphine during the last three days of her life. The morphine made her sleepy but she was always compos mentis and coherent except on the night before she died, when she became distressed and confused. Theadora’s mother was very distressed for about an hour and a half, but then went to sleep and died peacefully at 11.00 a.m. the next day, with members of the family with her. Theadora stayed with her mother for about two hours after she died, which she felt was very important.

Theadora’s mother was in a private room in hospital when she died. She had hoped to die in a hospice but the family and the hospital staff decided that it would be too distressing and that she was too ill for her to spend almost two hours in an ambulance and they felt that the nursing care in the hospital was good, so a transfer did not take place.

Theadora’s mother was Jewish and she had a Jewish funeral with many people from different faiths in attendance. She died on a Saturday and was buried the following Tuesday. About 300 people came to the funeral. There were prayers in the family home for two nights after the funeral and lots of people came to demonstrate the deep affection they had for her. A year later the family had a ceremony and erected a memorial stone at the site of her grave.



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