“I have come away more inspired, informed and committed to make a more positive change for my patients.”
By Rachael Hayes-Brown.
On February 6 -7 2015, a group of delegates came together for the 2nd Flinders Survivorship Conference in the beautiful city of Adelaide, South Australia. The conference was held over 2 days at the Adelaide Convention Centre, situated along the River Torrens.
The Host organisation Flinders Centre for Innovation in Cancer (FCIC) incorporates Flinders Medical Centre Foundation, Flinders University and Government of South Australia Health. To provide some background information on this host organisation, their main focus is cancer prevention and early intervention through an integrated approach. FCIC is a centre from which ground breaking treatments evolve and are delivered compassionately to help those patients grappling with cancer to be able to beat it before it overcomes them. An example of a program they offer that supports cancer patients is the “Livestrong” Program. A program aimed at “improving survivorship care”.
The theme to this year’s conference was “Life after Cancer – from Recovery to Resilience”. Convention and audience delegates included Clinicians, Researchers and Consumer Advocates from all around Australia whose specialities/roles/interests lay in all areas related to Oncology. Audience delegates were also made up of cancer survivors, their carers or those people who have been affected by cancer in some way. It was a forum to share stories of survivorship, learn of the latest developments in care and research related to cancer survivorship and discuss the basic issues that cancer survivors face today.
There were many invited key speakers including Sally Crossing AM, Dr Daniel Byrne, Dr Haryana Dhillon, Associate Professor Michael Jefford, Ms Gabrielle Kelly, Professor Bogda Koczwara, Ms Julie Marker, Mr Luke Ryan, and Ms Meg Rynderman just to name a few.
I attended the conference as an Oncology nurse with a personal interest and passion for healthy living. I wanted to learn more about the needs of cancer patients beyond their treatment regimens and how to be able to improve the care I give and maybe inspire those living with cancer to be able to improve their own quality of life after treatments have completed.
The most compelling speakers for me, and there were many, over the 2 days were the following,
Sally Crossing AM, Cancer Voices, NSW – who was presented with the Inaugural Ashleigh Moore Oration and spoke personally about her experience of living with cancer and her life now as a consumer advocate working in research and advocacy. Her presentation was one of the first to begin to address some common issues faced by cancer survivors. It was her opinion that we need to be aware of the importance of guidelines and cancer care co-ordination inclusive of good follow up care being another important issue. Then going on to talk about her summary of 8 key areas that could be looked at in the good management of long term cancer patient care – in turn to improve quality of life for cancer survivors. I found Sally’s presentation particularly relevant to me as it gave me insight into the perspective of cancer survivor issues and what they found to be the most important for their own long term ongoing care.
Mrs Meg Rynderman from Peter MacCallum Cancer Centre, Victoria delivered an excellent presentation on “Developing Cancer Survivor Stories” talking about personal narratives told to and written by a cancer consumer. I found her presentation to be particularly relevant to me as I learnt of the importance of cancer patients being able and willing to share their stories, benefits to telling their stories in a variety of formats and the therapeutic affects this can have on these cancer survivors, not only for the cancer survivors themselves but to empower those with cancer reading their stories. I could relate some of the information from her presentation to the patients I care for in the community, that stories are an important resource for survivors.
Ms Danielle Spence from Breast Cancer Network Australia, Victoria spoke about “Addressing the gap – meeting the long term survivorship and rehabilitation needs of women living with secondary breast cancer”. Danielle spoke about the broad range of areas that breast cancer survivors face such as dealing with the long term side-effects of past treatments, relationship, finance and work related issues, fear of recurrence of cancer and looking after one self were a few of the main topics. Once again I found her presentation particularly relevant to me as I now have a better understanding of the ongoing needs/issues of my breast cancer patients face and what needs/issues could be addressed to improve the quality of their the survival.
Other Presentations along the same lines as the above too which I found the most value and could relate to my work was a presentation from Ms Julie Marker from Cancer Voices South Australia talking on “More than just telling my story”- when cancer survivors became teachers. I thought it was a very innovative concept and very engaging presentation.
Another was from Ms Gabrielle Kelly, from Wellbeing and Resilience Centre, SA whose presentation talked about “Building resilience in the state of wellbeing; measurement, interventions, transmission, evidence and community in a life course approach”. Gabrielle discussed the idea of building resilience in people before the diagnosis of cancer as a prevention strategy. Improving our health and wellbeing also, and whether this impacts on our ability to cope more positively through the course of cancer diagnosis and treatment. Many aspects of her presentation were particularly interesting to me as I personally believe a healthy lifestyle and wellbeing does prepare a person better to deal with challenges in life and I do see this in the patients that I care for. The research that she presented in relation to the possibility of measuring resilience was also very interesting.
Generally I found the presentations from those speakers directly involved with working with cancer survivors, or those by cancer survivors themselves to be most interesting and relevant. Listening to and learning about a “Cancer survivors Voice” had most impact – giving me an understanding of what concerns them the most, what are they really going through and how clinicians and practitioners might be able to help them more effectively.
Presentations over the 2 days did include the key points of research that had already been undertaken in the areas relevant to cancer survivorship. Some key issues became apparent over the course of the conference related to there being more data collection, ongoing research projects in some of the areas of main concern to cancer survivors. An example is more information surrounding the very real issue of ‘fear of cancer recurrence – FCR’. FCR had been identified as a key finding already in some data collection to date as a commonly reported concern and unmet need. Associate Professor Michael Jefford from Peter MacCallum Cancer Centre, Victoria spoke about FCR in one of his presentations in greater depth. Research findings on various areas of cancer care (life after cancer) and intervention related to nutrition and bone health were discussed in presentations by the conference convenor Professor Bogda Koczwara. Overall there were many interesting research related presentations in a wide variety of areas related to the “Life after Cancer” theme. Poster presentations and demonstrations of new products outside of the oral presentation area were informative and applicable.
Another highlight was an extremely entertaining Book Reading by Luke Ryan, a Writer, comedian and two-time cancer survivor, from Melbourne. He read excerpts from his book -“A Funny Thing Happened on the Way to Chemo”. It was a wonderful insight into his thoughts, occurrences, reflections and comedic approach to dealing with his two-time cancer diagnosis. I thought his hilarious and engaging presentation was not only inspiring but informative. Luke could articulate very well his reflections to the audience and therefore I was able to quickly get a good grasp of how he saw things during his treatment and now as a cancer survivor, and how humour helped Luke deal with the enormous challenges he faced as a young person. A very real insight into the thought processes of a person using positivity and humour to get through his treatments and life.
I felt that the key themes that came through for me during this conference were:
- That cancer survivors still have issues/concerns post treatments, a common one being ‘Fear of Cancer Recurrence’. Resilience and Advocacy were talked about throughout, the importance of ongoing health and wellbeing and the role of many supportive therapies that can improve quality of life.
- The importance of cancer survivors sharing their cancer experience with others.
- For clinicians to continue to improve, develop and monitor good models of care incorporating and addressing all aspects of patient care i.e. Psychosocial.
In conclusion I felt that this conference was relevant, thought provoking, inspiring and extremely informative. Gaining an insight into the main issues/concerns of a cancer survivor will benefit me greatly in my work. I feel better informed, see the importance of prioritising the supportive care I give to my patients in regards to their long term care and am more aware of their crucial needs. There are many ongoing issues cancer survivors face that still need to be addressed to improve their quality of long term care and ensure better quality of life after their treatment has finished. I have come away more inspired , informed and committed to make a more positive change for my patients.
Rachael Hayes-Brown is Oncology Specialist Nurse (pictured right with a patient.)