“There were plenty of support groups and services for children and older people with cancer, but nothing much for people aged 25 to 44,” she said.
“I remember going along to one group where there were lots of older people and being offered a cup of tea, a biscuit and a nanna rug.
“When you are in your 20s you don’t want this. You want to relate to people the same age, people going through the same thing as you.”
Seven years after Nikki’s battle with cancer and now 26 weeks pregnant with her first child, Nikki, from Byron Bay, has been instrumental in getting the New South Wales Cancer Council to fund a Young Adult Advocacy Training program to help set up support services for young adults who have cancer.
Nikki, who is a volunteer young adult development officer for the council, undertook the advocacy training two years ago.
The training spurred her on to complete her Honours in Health Promotion (she has a degree in health promotion/health education) and to complete a study that was specific to the young adult age group.
The study ‘The Lived Experience of Cancer in Young Adults aged 25-44 in Australia’ showed Nikki that there were many gaps in the health care system.
“This age group affected by cancer currently shows that their survival rates over the past 30 years has only improved by four per cent, while young children and older adults have had their survival rate increases in the vicinity of 20 to 30 per cent,” Nikki said.
“Therefore this age group faces a myriad of issues including higher death rates, isolation and being misunderstood.
“Many young adults that I speak to want to do something to help others, and advocacy is an empowering way to do this.”
Nikki said that past advocates had gone on to lobby health services to provide outreach chemotherapy services in rural NSW; lobbied the Government for more financial assistance to patients needing to travel long distances for treatment; and worked with local councils to make playgrounds smoke-free.
“If there had been more support for me while I was going through the cancer, the chemotherapy and everything else you are dealing with it, it would have made a big difference. I would not have felt so isolated,” she said.
While the two-day advocacy training is in Sydney, The Cancer Council pays for flights, accommodation, meals etc.
Nikki is also planning to start a face-to-face cancer support group for young adults on the North Coast, but not until she has had her baby, which is due in August.
“I am so excited about the impending birth,” she said.
“I was told that after 33 weeks of chemotherapy and then a rare fungal infection of the blood which kept me in hospital for a further six months, that I would not be able to have children.
“I guess I proved them wrong.
“It just goes to show what the love and support of family and friends, Chinese medicine, yoga, meditation and eating organic food can do.”
The advocacy training will be held in Sydney on June 19 and 20 and applications close on May 22.
For more information, phone Rory Alcock on 93341859 or Nikki Shipard on 0421191914.
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