Pancreatic Cancer

Everyday life and facing the future

A life-threatening illness is a major event. Many factors affect everyday life - symptoms, current treatment, the side effects of treatment, the care and support available, the prognosis and living with uncertainty. People described their everyday lives. Some had finished treatment and were well, others were still having treatment and a few were having only palliative care (to help manage symptoms and make the person comfortable).
 
Peter (Interview 36) said that he lived a normal life in ‘every way’. He'd had a rare type of pancreatic cancer, a neuroendocrine tumour, which had been successfully removed in 2000, over 10 years ago. Peter felt very fortunate to be alive. Although from time to time he remembered vividly what had happened, most of the time he did not think about it much. Just occasionally he wondered if his cancer might return, and he reflected that fear of death is part of being human.
Elaine finished her treatment in 1996, 15 years ago. She explained that although her outlook on life had changed, she wanted to lead as ‘normal’ a life as possible.
Tony had a Whipple’s operation in 2010. In spite of still having chemotherapy he said that his life was ‘back to normal’.
Carol finished her treatment in 2009, about a year ago. Having survived major surgery and finished chemotherapy, she felt elated that she was alive and feeling well. Occasionally she worried about a recurrence, and sometimes she felt sad because life had changed, but most of the time she felt that ‘bad experiences’ were behind her. She described her everyday life, which included cycling, swimming, walking and gardening.
Fred also felt optimistic about the future. He hoped for a long life and said that if his health kept on improving he would soon be back playing golf, swimming and walking as he had done before the Whipple’s operation. Others said they were pursuing hobbies or sports, taking holidays or doing voluntary work.
 
Michael had just finished his treatment. He suspected that his life might be shorter than he had expected, which made him sad. However, he was quite optimistic about his chances of survival. He felt at peace with himself, partly due to his spiritual beliefs, and he still enjoyed life and laughter with friends and family. He regarded his illness as a ‘wake up call’, which led him to decide to spend his future time in supporting others. Other people said the illness had made them reassess their values.
 
Some people knew that their prognosis was poor but were determined to enjoy life for as long as possible. After Dorothy developed jaundice in 2007, three years ago, a stent was inserted to relieve her symptoms. Her consultant said that she almost certainly had pancreatic cancer. He also said that major surgery was impossible. Dorothy felt well, apart from feeling a bit breathless at times. She decided not to have chemotherapy.
Peter (Interview 13) had a list of things he wanted to do before he died. He wanted to become more proficient at playing musical instruments, to read more and to walk the South Downs. Steve felt well. He hoped he would remain well until close to the time of his death.
People had experienced a wide range of emotions during their illness. For example, when Ann was first diagnosed with pancreatic cancer she felt it was very unfair because she'd already had breast cancer. When recovering from surgery she felt so ill that, at times, she 'wanted to die'. However, after she had recovered from the Whipple’s operation she felt quite optimistic about the future and decided to get on with her life. She didn’t feel she was ‘fighting’ cancer but just carrying on with life. When her cancer recurred she felt angry at times because she knew she wouldn't be able to finish her plans to set up an Institute of Health Experiences. She also felt angry that some of her grandchildren may not remember her. Ann also felt very sad that she no longer had the strength to do various things, such as cycling. Sometimes, when she felt unwell, a hot bath would change her mood and make her feel better. At other times a walk up the garden and some fresh air or a chat to friends would lift her mood. Looking at old photographs and making memory boxes for her grandchildren also gave her enormous pleasure (also see ‘Making plans for death’).
Many people said that their mood varied from day to day or that they had conflicting feelings. Bob, for example, felt lucky that he had survived so long and that he still ‘felt good’. On the other hand he had been ‘robbed’ of his retirement. William had been told that he had terminal cancer, which depressed him a bit at times. However, some days he woke up and felt ‘really upbeat’ and that ‘life was great’. He decided to live life from day to day, and not to think about the future. Ben felt he was ‘living on borrowed time’ and at times felt life was ‘horrible’ – he had no idea what was round the corner. However, he hoped that new treatments might be developed. Bob tried to keep positive to avoid depressing the people around him. Peter (Interview 43) found that working on the house and garden helped him to forget his illness.
 
Some people found it hard to forget they had cancer and regretted that they had so little time left to do things they wanted to do. They often wondered whether they would live to see their children grow up. Adrian, who knew he was dying, said that he felt ‘very unhappy’ about the situation and that he thought about it from when he first woke each morning. Steve enjoyed life, but sometimes he felt he was living with a ‘ticking time bomb’. Hamish felt depressed at times but said he had had a good life.
Even though many people had wanted to lead ‘normal’ lives for as long as possible the lives of most had changed. Ann’s life had changed ‘phenomenally’. Some people had symptoms, such as backache. Many felt very tired at times and needed to rest. Some needed help with housework. Adrian said that he spent most of the time in bed, and Ben had become a ‘hermit’. Steve had to retire from work so got up later than usual and watched daytime TV. Ann did her shopping online for the first time and found she missed looking for the things in the supermarket, and forgot several things she needed.
 
Eating was a problem for many people too (see also ‘Long term effects of the cancer and its treatment’). Lilian, who was having chemotherapy, had bouts of sickness. Hamish found eating ‘frustrating’ because he quickly became bloated and couldn’t eat much at a time. He also complained that his taste buds had ‘gone’ and that food tasted like cardboard. Ann described her changing tastes. Sometimes she fancied eating bland dishes, at other times she wanted something spicy. She concluded that ‘getting food right is actually quite difficult’. She no longer enjoyed cooking and sometimes couldn’t decide what she wanted to eat.
A few people talked about the effects of their illness on sexual relationships. William’s painful incision made ‘intimacy’ impossible. Donna also explained that pain and tiredness had ended her sex life. However, she always made an effort to look nice to prevent herself feeling 'undesirable'. Peter’s radiotherapy and chemotherapy (Interview 13) had reduced his ‘sex drive’ to zero. However, one woman said that to her surprise the drugs she was taking had improved her libido.


Last reviewed June 2015.
 

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