Living with and beyond cancer

Raising awareness and supporting others

After having cancer some people feel they want to support other people with the same type of cancer or campaign to raise awareness of the condition or improve cancer services.
 
It is common for people who have been through cancer to say that they would have liked an opportunity to speak to someone early in their journey who had been through the same thing, but that this had not been available. Although cancer is still considered a taboo subject by some members of the public, people who are living beyond it often feel comfortable talking openly about their experience to strangers as well as friends and family. Many we spoke to had therefore made it known that they would be willing to speak to other patients who would welcome the reassurance of meeting people who had recovered from cancer and could address some of their concerns.
Some people had provided this kind of support informally to friends or colleagues with cancer or to friends of friends. Others provided support to strangers through their hospital or by joining a charitable organisation, many of whom run telephone helplines or befriending schemes. Some hospitals and charities only allow people to support others once they have recovered from treatment. Not everyone who wanted to support new patients had been able to yet, often because their type of cancer was rare. One man said that the wife of a friend had phoned him about his testicular cancer diagnosis but that the man himself hadn’t wanted to talk about it.
Joining a local cancer support group was another way in which people could support others. Some joined during their illness, others waited until they had recovered. Local groups are not always available, particularly for rare types of cancer, so some people started their own, often with help from professionals. Some groups did fundraising or awareness raising activities as well as peer support. One woman started a local group for women who had cervical cancer but the demand was so great that it soon began providing telephone support to women in other parts of the country. A man started a local leukaemia support group but it folded after 3 years due to poor attendance and the death of some participants, but in that time they published a booklet about their experiences for other people.
Another woman with cervical cancer, who had found no one locally to share her experience with, advertised in a national cancer charity’s newsletter and ended up compiling a book of several women’s experiences from across the country; the contributors formed a mutual support network and some of them met up once. A few people started a website to provide information and support to others. A woman who was one of the first people to take Glivec for chronic myeloid leukaemia started a website to share her story and inform other patients about this new treatment opportunity.
 
Some people said they had talked about their cancer experience to health professionals at conferences or training days to improve their understanding of the patient’s perspective. A few had acted as a ‘guinea pig’ for medical students, and one had been a clinical psychology ‘case study’. Derek had taken part in a film about breast cancer surgery. Others joined committees to influence health services delivery, increase patient participation in research, or raise the profile of their cancer type.
Although discussion about cancer is more open nowadays, a few people felt angry about the way cancer is sometimes portrayed in the media. Some who had survived lung cancer said that showing poor survival rates for lung cancer in the media could encourage people to quit smoking before it made them ill but these portrayals were depressing for newly diagnosed patients. One said she would like to see depressing stories or advertisements about cancer replaced with positive stories about survivors. A woman with ovarian cancer was upset that the word ‘cancer’ was often used to describe something horrible.
 
It was widely recognised that the amount of information available to the public about cancer had increased over time, but some people felt that there was still not enough public awareness of their cancer type and its symptom recognition. This drove many to campaign for greater awareness or improved treatment. A woman with ovarian cancer had mounted exhibitions, given talks and written newspaper articles for a national charity; she encourages women to pass on information about symptoms to other women. Several men were trying to raise awareness of testicular cancer symptoms and encouraged men to examine themselves. Another was campaigning for better information provision in hospitals for cancer patients.
Whilst there is a lot in the media about breast cancer in women, there is very little about breast cancer in men, which it does in small numbers. Some men were angry that most of the publicity about breast cancer only mentioned the disease in women and that information leaflets were often inappropriately worded for men. They wanted to be regarded the same as women with breast cancer and have equal access to treatment and support services. As a result they were campaigning to raise awareness of breast cancer in men and for improved information and services, but were frustrated at the slow rate of change. However, some progress had been made: Bill and David W had helped a breast cancer charity to produce a new information booklet for men and had taken part in the charity’s fashion shows alongside women with breast cancer. Bill said that in his area men with breast problems were now referred to the same one-stop breast clinic as women.
Some people’s involvement in voluntary work included fundraising for charities or for improved hospital facilities, because they wanted to repay the help they had received. Several had organised or taken part in sponsored events. Tim had sold his paintings in aid of charity. Others donated regularly to charity.

Last reviewed August 2015.

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