Caring for someone with a terminal illness

Victoria & Hugh ' Interview 41

Female
Age at interview: 71

Brief outline: Victoria's husband Hugh has mesothelioma, which is a rare form of cancer normally caused from exposure to asbestos. In Hugh's case a tumour has developed in the space between his lungs and rib cage.

Background: Victoria is a retired teacher. She is married with three grown up children. Ethnic background' White British.

Audio & video

Victoria’s husband Hugh went for a pulmonary function test in September 2010 and they were told that he may be terminally ill with mesothelioma, which is a rare form of cancer normally caused from exposure to asbestos. At the start of October Hugh returned to the hospital for a PET scan which confirmed the diagnosis of mesothelioma. He then had a consultation with a surgeon, but unfortunately Hugh was not suitable for surgery due to previous blood clots. They also decided against chemotherapy as this treatment would put him at risk of stroke and heart attack, while only prolonging his life for a short time.

On this same day Hugh was fitted with a pleural fluid drain. They did not know how to use the drain and so local nurses visited their home twice weekly to use it. By February they were no longer able to drain the fluid as the tumour had grown around the drain. The drain was removed and this caused Hugh to feel sore for most of March.

Victoria discusses how Hugh’s condition is deteriorating; the tumour has stopped him from using his right arm and he becomes quite breathless when moving about. Hugh has asked many doctors how long he can expect to live and how his condition will deteriorate. However, doctors seem reluctant to answer his questions claiming they do not know. This worries Hugh and Victoria because they wonder if doctors are trying to protect them from the knowledge that it is going to be ‘horrendous’. They are keen to know what happens next in terms of Hugh’s condition and Victoria describes how not knowing what to expect is one of the hardest things to deal with.

Victoria has not found it difficult to care for Hugh and explains how she doesn’t really see herself as a ‘carer’, but instead thinks of herself and Hugh as a ‘partnership’. She expects that she will need more help in the future as Hugh’s condition worsens but is unsure what help is available and does not know how to organise this.

They both attend a Breathe Easy support group which they find very useful. She describes how as well as being a social event, it also provides them with a chance to talk to health professionals and get practical information. Friends, family and neighbours have provided Hugh and Victoria with great emotional support. Victoria also discusses how their faith has given them both comfort and support, and wonders if they would have been able to cope without this. Victoria is impressed by Hugh’s attitude as he tries to be as active and positive as he possibly can.
 

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