Focus on... Support Groups
Over the last few years, the number of local support groups has grown considerably with new groups starting all the time as more people find benefit from this method of self-help. Self-help and support groups aim to help people through some of the difficulties that accompany a diagnosis of cancer, giving back a sense of control.
Cancer can be a lonely business and support groups can help reduce the sense of isolation, offering a safe haven where people can talk openly and express feelings and emotions to someone who has had a similar experience.
The relief at finding there are others in the same position was highlighted when OpenDoor talked with Cherry Mackie, the support group co-ordinator at the LJMC.
... cancer can be a lonely business...
Some years ago, Cherry was running a meeting of a local group. About 20 members had arrived and Cherry was busy serving refreshments, preparing for the evening to come amid the hubbub of general chatter.
Out of the corner of her eye, she noticed a lady open the door and start to enter. The lady paused, took in the scene, turned round and left. Cherry slipped out after her and enquired as to whether she could help.
"I'm looking for the support group meeting," said the woman. "You've found it," replied Cherry. Tears welled up in the lady's eyes as she said, "I didn't know there were so many others in the same position as me."
What happens at support groups?
There are two main types of group:
Professionally led groups: This type of group is usually co-ordinated by a professional such as a specialist nurse.
Self-help groups: This type of group is usually run by its members although it may receive regular support and input from health professionals.
Winnie Nugent is the Urology Clinical Nurse Specialist (CNS) at Mount Vernon Cancer Centre (MVCC). One of the support groups she runs at MVCC, together with Cherry, is for men who have experience of prostate cancer.
She explained that it is typical that a group led by a health professional focuses on clinical issues so Winnie and Cherry organise the monthly programme of speakers to include health professionals working in all the different treatment areas.
These include oncologists, radiographers, dieticians and other allied professionals.
... something for everyone...
They balance the programme with some regular subjects as well as new topics so that there is something for everyone, regardless of how long they have been a member.
On talking with members, it was clear that they appreciate this approach. "Even if you've heard a speaker before, there's always something new to be gained from what they say," explained one man who has been coming along for several years.
After the talk and time for questions, tea is served and members can stay and chat. This is when much of the 'support' happens. A conversation about the speaker leads naturally into further discussion and questions. One man who has already had a particular treatment may share his experiences with another about to start the same regime.
... reassurance from speaking with someone who's 'been there'...
Winnie encourages this sharing of knowledge and experience. Indeed, when she sees patients in clinics, she actively encourages them to come along to the group as she knows the best way for them to get answers to their questions is to speak to someone who has had first hand experience. This can be particularly beneficial to patients faced with different treatment options where she needs to remain objective.
The support group also helps Winnie in her role as a CNS as both have the same aims – to support people affected by cancer. For all her years of experience working with cancer patients, there is a different reassurance to be gained from speaking with someone who's 'been there'.
The Trojans Breast Cancer Support Group was started eleven years ago by one of the Breast Care Nurses. Ann Phillpot joined the group and, when changing work patterns necessitated a change of leadership, found herself 'volunteered' as the group's new Chairman.
... new members are welcomed and introduced...
Meetings start with a cup of tea and time for chat. Ann and Trojans Secretary, Wendy, keep an eye on the door for new members who are quickly welcomed and introduced.
Wendy organises the programme of speakers for the group who tend to be from less clinical backgrounds. They've had speakers on fashion and clothing, complementary therapies and even a laughter therapist, as well as from wig manufacturers and specialist lingerie suppliers.
After the speaker has finished, there's further time for an informal chat. Ann laughs when she says she often finds herself having to throw the last people out, rather like pub closing time. Clearly it's a very successful and lively group.
Although the group has occasional input from health professionals, it is run by the members for the members.
...mutual support...
As a former nurse as well as Chairman, Ann often finds people asking her questions about medical matters. "It's a fine line between sharing your own experience and giving advice," she cautions. Another valuable role that support groups play is to signpost people to sources of further information and Ann is quick to highlight the many reliable websites and leaflets available.
Ann finds running the group extremely rewarding personally. "It's good to be able to give," she said. As well as having strong support from her husband, Ann receives support from members of Trojans too. "It's a question of mutual support – it's not a one-way process," she stresses.
When's the best time to join a support group?
One of the many benefits of support groups is that they welcome people at all stages of their cancer journey, from the newly diagnosed to patients who have long since ended treatment.
It is the nature of the 'shared experience' that provides such immense strength to support groups, no matter when that experience was gained.
Many patients find that they can only begin to talk about their cancer after active treatment has finished. However, they may find it difficult to talk to friends and family who may believe that, now they are well, they can put things behind them. To find a safe and confidential place in which to open up and express their feelings can be a huge relief.
What else do support groups offer?
Most support groups offer regular meetings, usually monthly. Outside of these they may also offer other services such as complementary therapies, counselling and bereavement support, a telephone helpline, practical help and home visits.
How much does it cost?
Some support groups charge a modest membership fee and/or an attendance fee. Others may only charge for refreshments. Charges usually depend on whether or not the group has to pay to hire the meeting venue.
What other support is there?
New Perspectives is a self-management course run by Macmillan Cancer Support. Participants meet weekly for six weeks to learn new skills and techniques to help manage their diagnosis.
The course is designed to help people with cancer to regain their confidence and enjoy a better quality of life.
A similar course for patients from the South Asian community is also being run at the LJMC.
Please contact the LJMC Helpline (01923 844014) for further information including details of the next courses that will be run at the LJMC.
Personal reflections
When James* was diagnosed with prostate cancer in 2007, the very word 'cancer' filled him with fear and dread. He was concerned for his family and for what the next few months would hold for them all. He had more questions than answers and anxiety that dominated every waking moment. What would treatment be like? What would the side-effects be?
James had been given a leaflet about the Prostate Cancer Support Group by the nurse at his clinic appointment and, on the basis that a problem shared is a problem halved, decided to go along to the next meeting.
When he met other men who had already trodden the path on which he was about to embark, he was able to share his problems and fears. He found answers to his questions from people who really knew and he started treatment feeling much better prepared for what lay ahead.
He did admit that he felt a bit lost at the first meeting of the group but soon felt comfortable and it wasn't long before he was offering support to new members who were themselves about to start treatment.
Like James, Andrew* was also frightened by his diagnosis. Andrew's wife had picked up a leaflet about the support group and passed it to him. "One of the best things she ever did," he declared.
Andrew particularly appreciated being able to ask questions in a frank and open way without the need for euphemisms. Prostate cancer affects many personal areas of a man's life and it has been really helpful to be able to talk about these issues.
If they could summarise the support group in one word, it would be 'optimism'. David and Andrew describe the group as happy; they have a good laugh – so often the best medicine.
* names have been changed
Last updated: March 22, 2011
> Find out more about Support Groups
This article first appeared in the Spring 2011 issue of the LJMC newsletter, Open Door.