Pancreatic Cancer

Other sources of support

People we interviewed were well supported by family and friends (see ‘Support from family and friends’). They also admired the consultants responsible for their care and were grateful for the support from their GPs (also see ‘Professional Care’). However, it was rare that consultants or GPs offer them the number of their direct phone line. This contrasted with specialist nurses in the clinic and Macmillan nurses who made a point of giving patients a phone number which allowed direct access to the clinic. Virtually all the people we interviewed mentioned this as an important source of support to them and their family.

Nurses involved in palliative care can have various titles. The charity Macmillan Cancer Support provides funding for many palliative care nurses. These nurses call themselves Macmillan clinical nurse specialists, or ‘Macmillan’, often even after charitable funding ceases. Some specialist palliative care nurses are funded by the local Clinical Commissioning Group or hospital trust and may be known as ‘hospice nurses’. Others are named after local hospice charities, such as Marie Curie, and Rennie Grove Hospice Care or Hospiscare.

These nurses have many roles in addition to traditional nursing. Steve and others told how their Macmillan nurse had guided them through the benefits applications (also see ‘Financial and Other Practical Issues’).

The nurse had helped one man ‘to get to grips with the great change in one’s life’. She also helped him to understand what palliative care means. Other people told how Macmillan nurses had organised support groups (see below), answered questions, helped them to get pain relief and dealt with dressings. The Macmillan nurse helped to mediate when one man’s family members had disagreements. Helen said that she could rely on the Macmillan nurse for help. Several people including Steve and Dorothy said that after the initial contact it was reassuring to know that they could reach the Macmillan nurse if ever things became more difficult: this was someone to whom they could talk about painful topics. However, Saba felt unhappy that when her mother was dying she had not appeared to benefit from seeing a Macmillan nurse because she had found it hard to talk about emotional issues with a stranger in a second language.

Different specialist cancer teams had their own nurses working both in the clinic and at patients’ homes. They too gave out their phone numbers and email addresses and were available to provide support. A specialist nurse sat in on Dorothy’s consultations with the consultant and was then ready to go over anything that worried her afterwards. Adrian’s specialist nurse helped him obtain a Macmillan grant, which was useful because he wasn’t working. A Macmillan grant is a one-off payment for adults, young people or children with cancer, to cover practical needs (see Macmillan Cancer Support). Other nurses specialised in palliative care were based either in the specialist clinic or in a local hospice.

District nurses gave help and support too. After operations the district nurse visited them at home to remove staples or to change a dressing, or if they had a feeding tube, to keep an eye on it. They also gave injections to help with pain (see ‘Professional care’). Davinder’s district nurse had helped her to obtain much-needed equipment for her room so that she could look after herself more easily. Ben’s district nurse called regularly to see how he was getting on.

Some people found that counselling had helped. William, for example, said that he benefited from the counselling offered by a local charity based at the hospital. He had some individual counselling and he also attended a useful stress management course which ran for eight weeks.

When Anthony's wife, Martine, was ill, the hospital provided counselling and therapy. The counselling was generally helpful, but Martine found the cognitive behaviour therapy very superficial and unhelpful.  Not everyone wanted counselling. Ann had enough support from family and friends.  

Anthony’s wife, Martine, looked for a support group for people with pancreatic cancer but couldn’t find one. She realised that the best support she could get was through the staff and the group of people she met while having chemotherapy or radiotherapy. It made a big difference that the receptionist knew everybody’s name. Theadora’s mother joined a cancer support group. The group was for people with various types of cancer, not just pancreatic cancer. John (Interview 40) found a support group at his local Maggie’s Centre. Maggie’s Centres are places for anyone affected by cancer. Maggie's is an independent charity. There are Maggie’s centres in various parts of the UK.

Vicky had contacted someone who ran a support group for people with neuroendocrine tumours, but had not been to a meeting. Vicky’s oncologist had told her about the group, The NET Patient Foundation, a charity in the UK & Ireland that offers information and advice to people with neuroendocrine tumours.

Others didn’t want to join a support group, feeling that they had enough support from family and friends. Carol had been to a local support group to find information, and said she might return so that she could help others and ‘give something back’, but she didn’t need a support group for herself. Simon’s wife did not think of herself as a ‘cancer patient’ and she wanted nothing to do with cancer support groups. Others, having recovered from surgery, wanted to forget about cancer and get on with life.

The internet was another source of support (see ‘Finding information’). Ben used it to communicate with others affected by cancer. He found Facebook useful and said that people could help each other by providing a ‘Cyber shoulder to cry on’. When Anthony’s wife was ill he looked at various websites, such as Pancreatic Cancer UK. People with teenagers and young children also found support for their children through the internet. Lesley’s 11-year-old daughter looked at a website called Riprap, which aims to help young people when a parent has cancer. Others found the website of the charity called Winston’s Wish, useful for children too (also see ‘Telling others about the illness’).

Some people found comfort and support through their religious faith. Audrey, for example, was touched when she got cards from members of her church congregation. She decided to go to church regularly and found great comfort from this. Michael’s local church members were ‘brilliant’ in the support they gave him, through their prayers and visits. Others wanted to ‘put themselves in God’s hands’. Dorothy didn’t fear dying because of her religious faith.

When Saba’s mother was dying she used to sit by her mother’s bed and read the Koran. Saba thought that her mother needed inner peace. Saba also found a friend, an Imam, and asked him to visit her mother. He came almost immediately and read from the Koran. As he was reading her mother died peacefully.  

Religion was not always seen as a source of support and irritated some. Bob, for example, did not like it when the local vicar kept appearing at the door. Bob told him that he would call him when he was needed. The vicar asked Bob if he had thought about his funeral and Bob replied that he was not planning on one.

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Last reviewed September 2018.
Last updated September 2018.


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