Support and companionship are hugely important to those with terminal illness. We heard that family, friends, doctors, nurses, Macmillan nurses, social workers, and others often gave excellent support to those living at home (see 'Care at home'). But sometimes support was lacking. In hospital, doctors and nurses were often too busy to sit and listen (see 'Hospital care'). Though many found support in a hospice or in a day unit attached to a hospice (see 'Hospice day care'), this care was not available to all.
Some people attended weekly or monthly meetings held by various support groups; they valued that they could sometimes give support and advice and sometimes receive help from others. A man who had bowel cancer belonged to a group called Living with Cancer. The group invited a regular speaker, and organised various social events. His wife said that membership of the group gave them a 'massive boost' because they could share their problems with others.
A woman who had breast cancer also enjoyed weekly meetings organised by her support group, ABCD (Advanced Breast Cancer Discussion Group). She recommended weekly rather than monthly meetings. She had also used a telephone support group, but concluded that it was better to see other people's faces when discussing death and other 'scary stuff,' so that you know how to respond to what others say.
A few people imagined that support groups would be very gloomy, and some people said that they didn't want to discuss their illness with others. A man with cancer of the pancreas said that such a cancer support group would not be his 'cup of tea'.
One woman, whose husband had multiple myeloma, attended a support group for people with the condition. She didn't find the experience helpful because all the other people were so unwell, so when she developed the same illness she didn't attend a similar group.
Others wanted to join a support group but couldn't find one for people with their particular illness, or only found out about a group many months later. A young man with a brain tumour was dismayed by the lack of support for people of his age with cancer and he helped to get a support group started. This man also desperately wanted one-to-one counselling. He wanted help so that he could better understand his illness, and where it was taking him, and he wanted someone to help him make his own decisions.
One-to-one counselling is sometimes available, and usually appreciated although one woman described a rather 'silly' conversation in hospital with someone who may have been a counsellor. A man who had testicular cancer and kidney disease said that he had benefited enormously from his regular sessions with a trained counsellor. He appreciated her honest approach, her promise that she would support him until he died, and the way she had helped him overcome his fear of words such as 'death' and 'dying'.
Others also explained how counselling had helped them to face their frightening thoughts about death.
A counsellor had suggested to one woman that she might like to write letters to each of her children to leave with her will or to give to them at an appropriate moment. She found this very helpful. A man with multiple sclerosis had regular meetings with a psychologist, who helped him to enjoy the time he had left with his family.
For information on counselling services see:
Last reviewed March 2012..
Last updated May 2010.
