Caring for someone with a terminal illness

Saba - Interview 36

Female
Age at interview: 45

Brief outline: Saba's mother was diagnosed with metastatic pancreatic cancer 4 years ago after having appetite and weight loss. Ten weeks of gemcitabine chemotherapy had no effect on the cancer. She deteriorated gradually and died 11 months after diagnosis.

Background: Saba is a designer. She is single and has no children. Ethnic background' Asian.

Audio & video

Saba’s mother’s symptoms began a year before her diagnosis, and included loss of appetite, rapid weight loss, tiredness and low mood, a metallic taste in her mouth and burning sensation in her eyes. The GP attributed the symptoms to depression and an allergy, but Saba’s mother suspected a liver problem. She asked for blood tests, which came back normal. At a family party a relative suggested that her mother should seek a second opinion privately from a consultant friend of his. The consultant found that her liver was enlarged and recommended a scan. The GP seemed reluctant to arrange this, so it was done privately and showed metastases on the liver. Saba knew nothing about cancer and sought information from the internet. She was shocked to discover that metastasis meant the cancer was already very advanced.

Saba’s mother was referred to hospital for tests and it turned out that a request had been made by the hospital 4 months previously for her to have investigations on her liver which had not happened. The tests confirmed cancer. Up to this point Saba’s mother had not been told that she might have cancer and the doctors seemed reluctant to speak to her directly and implied that they would like Saba to tell her the news. Saba declined and was shocked at the matter-of-fact way in which they broke the diagnosis. Two weeks later they saw an oncologist who told them that the primary tumour was in the pancreas and there was a choice of two types of chemotherapy' either a week’s intensive course as an inpatient, or a weekly outpatient course of gemcitabine, but suggested that Saba’s mother might be too frail to withstand the intensive treatment. Saba asked about life expectancy and was shocked to learn that her mother would live only a few months. They chose the gemcitabine. The first dose caused a fever, so subsequent doses were reduced. After 10 weeks of chemotherapy the tumour had not shrunk at all so all further care would be purely palliative.

Saba’s mother declined gradually over the next few months, developing swollen feet and back pain, and later shingles. On two occasions she stayed in a hospice for a few days where she was well cared for. She became gradually weaker and couldn’t walk and began to spend a lot of time in bed, and developed bed sores. When she developed chest pains and breathing difficulties she was admitted to hospital then transferred to the hospice. The day after entering the hospice she died. Saba had been glad that her mother had died there because the atmosphere was serene and the staff were very caring and respectful of their Muslim traditions.

During her mother’s illness Saba had been working abroad a lot and felt that she and her family had not been given enough support in dealing with the illness on a day-to-day basis. They received some support from the GP, District Nurse, a Macmillan Nurse and Social Services, but Saba was left to do a lot of her mother’s personal care herself, at a time when she would have preferred to spend quality time with her, and felt that she had to fight constantly to try to get the level of professional care that her mother needed.
 

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