
Symptoms of more advanced disease
- Age at interview:
- 40
- Sex:
- Male
- Age at diagnosis:
- 39
- Background:
- Ben was a Care Worker before he was registered disabled and had to retire due to ill health. He is married and has 4 children. Ethnic background/Nationality: Black British.
- Age at interview:
- 76
- Sex:
- Male
- Age at diagnosis:
- 72
- Background:
- Hamish had a lighting consultancy until he retired. He is married with three children. Ethnic background/Nationality: White British.
- Age at interview:
- 45
- Sex:
- Female
- Age at diagnosis:
- 65
- Background:
- Saba is a designer. She is single and has no children. Ethnic background: Asian.
I think the biggest thing that we noticed was that her feet started to swell quite a lot, huge. My cousin was getting married in the summer, and my mother had been looking forward to my cousin’s wedding. She had, like, you know, it’s going to be a big occasion. She had, like… we’d gone shopping and bought her new saris and new shoes. She was looking forward to sort of like getting dressed up. But her feet were starting to swell. I mean they were huge. It was almost as if she had elephantiasis and that was due to the fact that because her liver was starting to slowly become dysfunctional. Her body couldn’t pump her sort of body water so it would all go to her feet. So she had to lie with her feet up all the time and we’d have to give her these special tablets that would, you know, get rid of the water. But that was, I think that was the most difficult thing for her was that she couldn’t fit into any of her shoes. She couldn’t walk properly because her feet were swelling up. She felt tired a lot of the time. She was prone to picking up colds and flus. I had to … we got a carer that would come in one day a week for about an hour, would come in the morning to, to help my mum get washed, make her breakfast. But because things are much slower with my mum, they would almost have to literally leave after, before the one-hour was up. So afterwards she’d be left sitting at the dining, dining table eating her, halfway in between eating her porridge, you know. And so it didn’t, I didn’t feel that was really of, of a lot of use. So I would say the hardest thing is the palliative care after that.
- Age at interview:
- 69
- Sex:
- Male
- Age at diagnosis:
- 53
- Background:
- John is a retired pensions manager. He is married for the second time and has 2 adult children. Ethnic background: White English.
- Age at interview:
- 39
- Sex:
- Male
- Background:
- Simon is a teacher. He is a widower and has two children. Ethnic background/nationality: White British.
- Age at interview:
- 43
- Sex:
- Male
- Background:
- David is a hydrologist (senior consultant). He is a widower and has two children. Ethnic background/Nationality: White British.

Last reviewed September 2018.