Most women we spoke to said they had received excellent support from family and friends in coping with their illness, and some found comfort in their spiritual beliefs (see ‘Support from family and friends and spirituality’). Here we describe the support women gained from professionals, support organisations, self-help groups and other people living with cancer.
Several women praised their doctors, especially their GPs, for their support and encouragement. Hospital-based nurses were also sometimes praised for talking with women and explaining things to them, sorting out problems and being always accessible on the phone (see ‘Communication with health professionals’). Macmillan nurses were another source of support (their role is described in the ‘Resources’ section). Many women said that Macmillan nurses had talked with them about their illness, sorted out problems and helped them to claim state benefits (see ‘Financial implications’). One woman’s Macmillan nurse had helped her and her mother to talk together about the illness. Another would have liked more help from her Macmillan nurse, who only visited her once.
Social workers also supported some women by talking and helping with benefits. A few had appreciated visits from clergy. Another said her acupuncturist was good at keeping her spirits up.
Describes the range of support services offered at her local cancer support centre and the…
Some women had had one or more counselling sessions, which helped them to deal with their feelings and those of other people about the illness. Some women found it easier to talk with a professional about their fears rather than distressing family or friends. One woman didn’t accept an offer of counselling because she wanted to try to cope alone, whereas another said that she had counselling because she couldn’t cope alone and didn’t want to overburden her family.
Describes how counselling helped her.
Although help from professionals was much appreciated, one woman thought that professionals care because it’s part of their job, unlike the loving care provided by family and friends (see ‘Support from family and friends and spirituality’).
Some women gained support from local or national cancer support charities such as Macmillan Cancer Support and Ovacome (see ‘Resources’ section). Several had subscribed to Ovacome’s regular newsletter, and some had been put in touch with another woman with ovarian cancer. One said she did not want to use Ovacome’s ‘Fone Friends’ facility because she didn’t believe there would be anyone available to speak to her who had as poor a prognosis as she had. Two others had volunteered to become a ‘Fone Friend’ to help other women.
Benefited from the experiences of other ovarian cancer survivors by subscribing to Ovacomes…
Women often said it was encouraging to talk to friends who had cancer or to hear stories of other ovarian cancer survivors, and some had struck up friendships with other women they had met when having their treatment. Another way of meeting people who may be in a similar situation and facing the same challenges is to join an online community. Joining a group can particularly help people who live alone or who cannot talk about their feelings with those around them. Other women said that attending a group enabled them to exchange information, to meet other cancer survivors, to share experiences with others who could best understand them, to talk openly and say the word ‘cancer’ without causing distress or embarrassment, or to be among people who you could talk to about cancer if you wanted to.
Gained support from hearing about, and making friends with, other ovarian cancer survivors.
Benefited from keeping in touch with other survivors through going to a local self-help group.
Local support groups often include people with many different cancers, whereas some women want to meet others with ovarian cancer. Some women had set up self-help groups themselves either because they felt isolated and there wasn’t an appropriate group already in their area or because they wanted to support other women with ovarian cancer. Some people benefit from attending a self-help group in the early stages of their illness but later feel they no longer gain anything personally but can continue to help others. One woman kept going for this reason and because she had learnt about research showing that people with cancer who belonged to support groups found it improved their mood, helped them to cope better with day-to-day challenges, and reduced their pain.
Started a local self-help group because she felt isolated and wanted to give something in return…
She no longer gains from attending her self-help group but continues for the sake of others.
Although a self-help group can provide many benefits, several women we talked to had not enjoyed their experience of them or did not want to join. Some said that they wanted to live their lives as normally as possible, do normal things and surround themselves with healthy people rather than others with cancer. Some felt they would become depressed by listening to other people’s stories or being among people whose situation was worse than theirs, or felt they had little in common with the relatives of people with cancer. Some women said that they wanted to handle their illness on their own, or that they already had enough people they could talk to and didn’t feel the need for extra support.