Caring for someone with a terminal illness

Simon & Karen ' Interview 37

Age at interview: 39

Brief outline: In 2007 Simon's wife was diagnosed with pancreatic cancer. She was aged 39. She started the TeloVac trial. The chemotherapy was effective but the vaccine was not. She had more chemotherapy and also complementary therapies. She died peacefully in 2009.

Background: Simon is a teacher. He is a widower and has two children. Ethnic background/nationality' White British.

Audio & video

In April 2007, Simon’s wife, Karen, experienced severe pain in her abdomen. This happened after the birth of their son. The pain was around her middle and going into her back. The doctor suspected an infection, so prescribed antibiotics. A nagging pain continued and the GP thought it might be irritable bowel syndrome.

In July 2007 Karen decided that she wanted to see a consultant, so the GP referred her to a consultant who saw private patients. Karen had an ultrasound scan, which showed that there was something wrong with her pancreas. The consultant referred Karen to another consultant, who did an endoscopy and took a biopsy of Karen’s pancreas. This consultant told Simon that Karen had an enormous cancerous growth. This was a huge shock to Simon. He did not tell Karen immediately because she was recovering from the anaesthetic. A few days later Simon and Karen returned to see a consultant oncologist (again privately), who told them both the devastating news that Karen had terminal cancer and that an operation was impossible and that she probably only had two years to live.

Simon and Karen dreaded having to tell other people about this terrible news. Neither of them really believed that death was a possibility and Karen said that she was convinced that she would recover. Both Simon and Karen slightly resented the pessimistic attitude of the oncologist, but looking back Simon realised that the doctor had no choice. Simon spent a great deal of time on the internet looking for possible treatments.

Within a few days Karen started chemotherapy as part of the TeloVac trial. The chemotherapy was very effective and from the scan it was evident that the treatment had shrunk the tumour. The chemotherapy, as part of the trial was given to Karen in an NHS hospital. The treatment made her feel very sick for a few hours afterwards. However, she did not lose her hair.

After about 12 weeks of chemotherapy (one day a week in 4 week cycles- three weeks on and one week off) Karen stopped the chemotherapy and was given vaccine treatment, but the vaccine was not effective (her tumour markers went up) so she soon stopped the vaccine. Looking back Simon had mixed feeling about Karen being on the trial. He said that he felt that Karen was being treated as ‘data’ rather than as a ‘human being’ (because looking back he realised that the doctors knew that Karen was going to die anyway).

Karen went back to regular chemotherapy, this time given to her in a private hospital. She liked the environment at the private hospital. During this time Karen was still convinced that she would beat the cancer and recover. She went to London to see another consultant. This was partly for a second opinion and partly to ask him about the possibility of CyberKnife treatment. CyberKnife uses pencil beams of radiation which can be directed at any part of the body from any direction via a robotic arm. This consultant did not offer them any hope of recovery and his attitude and manner was upsetting.

Karen was determined to survive. She consulted a doctor (an ex-GP) who sold products such as Carctol, an Indian plant extract, and also vitamins and minerals, which she said might be beneficial. This doctor gave Karen and Simon enthusiasm and optimism. Karen spent a great deal of money on these products, and Simon is convinced that the doctor’s attitude and the products that she sold helped to prolong Karen’s life. However, he feels suspicious about people who make a living by selling to people with a terminal diagnosis.

Karen also consulted a therapist who practiced the Bowen technique, and she saw a spiritualist healer at regular intervals. Karen did not want to be seen as a ‘cancer patient’. She did not join a support group and she did not seek any counselling. Simon, on the other hand, did have some counselling to help him cope with the traumatic situation. He felt that he needed to talk to someone. He found this counselling invaluable.

Karen went on with the chemotherapy until about November 2008. She stopped the chemotherapy because of the side effects and because it was affecting her blood count.

Karen was in pain all the time, but at first she did not have any other symptoms of pancreatic cancer. After about six months she started to have chronic diarrhoea, which was very distressing. She took Creon, but this did not really help. By the end of 2008 she also retained fluid, which made her stomach distended. Sometimes she had to have this fluid drained off her abdomen.

By this time Simon had stopped working because he wanted to have time to be with Karen. They went on a skiing holiday, which was spoilt because Karen was vomiting. Looking back Simon wishes that they had consulted their GP and the local palliative care team for advice. Eventually they found that there was an injection which helped to cure the vomiting.

Karen gradually got weaker, and then the GP and the community nurse team got involved and they were wonderful. By mid January Karen was housebound and needed more care. Karen needed more pain relief, including morphine. The nurses cared for Karen and they also provided support for Simon. They were a ‘life-line’. Karen got thinner and thinner and needed more drugs for the pain. At times she became confused and was hallucinating. Eventually she drifted in and out of consciousness. Karen died peacefully at home on 6th February 2009. Simon arranged the funeral, which was exactly as Karen would have wanted. It was well organised and very moving and inspiring. During all this time Simon had huge support from his parents and his sister.


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