NEWSLETTER

No.45 May, 2006

Editor: John Conroy

We Are Four Years Old!

1. COMING EVENTS

(Meetings are normally held (unless otherwise advertised) at 6.30 pm on the first Tuesday of each month in the Palliative Care Cottage, Mona Vale Hospital)

Tuesday, 2 May Maxine Rosenfeld (Counsellor, Northern Beaches): Acknowledging Depression and Taking Action Maxine is based on the Northern Beaches but hails originally from the UK. She is a consultant, trainer, counsellor, supervisor and writer, with wide experience of working with a variety of organisations, both large and small, from volunteer- based agencies to large non-governmental as well as non profit organisations.

Many of her writings have been about aspects of counselling. In the UK she was extensively involved with the Cancerlink Information Service and the establishing of support services for people with cancer, especially for minority groups.

Tuesday, 6 June Visit to the Sydney Adventist Hospital Pathology Laboratories The Pathology of Prostate Cancer. This will take the place of the usual monthly evening meeting. It will be an opportunity to visit the laboratories, speak with pathologists, examine prostate tissue, see the workings of a prostate tissue bank, and learn how the Gleason score is calculated.

Those who have signed up to attend are: David Bennett, John Conroy, Geoff Emanuel, John Kirkland, Michael Kotzen, Rosie Kotzen, Don Roberts, Jo-Ann Steeves, and Andrew Zahura. Please let me know if your name has been omitted or if you would like to attend (9918 9358). Numbers are limited.

At 2.00pm the Group will meet at Jacaranda Lodge at the rear of the Sydney Adventist Hospital, Fox Valley Way, Wahroonga. We will be split into smaller parties to make the tour. I shall contact participants in the week beginning 29 May to check on transport needs.

2. Report of the Meeting held on Tuesday, 4 April

Apologies were received from Una Conroy, Richard Darmopil, Ron and Mary Jones, and John Reid. We welcomed to the Group: Paul Collins, Brennan Donnelly, Phil Howitt, and Glen Keep.

Our speaker for the evening was Ms Kim Pearce, Project Coordinator with the Cancer Information and Support Services Division of the Cancer Council NSW. Kim's presentation covered an overview of the work of the Council, an outline of its Supportive Care Program, and its research into the work of Cancer Support Groups.

The Cancer Council is the largest charity in NSW. It is independent and has both corporate and community membership. Its main areas of activity are: research, patient support, cancer prevention and screening, advocacy, work in the community, and fundraising.

Kim then presented the Ten Ways package; - the ten focus areas in which the Cancer Council offers help to the community:

The Cancer Helpline 13 11 20

The Support and Information Pack

The 'Understanding Cancer' series of booklets

One-to-one support

Cancer Answers on-line at www.cancercouncil.com.au

Telephone group-counselling

Living with Cancer programs

Cancer Information Library

Multicultural Cancer Information Service

Cancer clinical trials.

She then went on to elaborate some of these.

The Cancer Council Helpline is the central point of contact for all services. It is manned by a team of oncology health professionals. and takes around 20 000 calls per year. It provides information, support and literature and has a listing of over 2 500 cancer-related services. The Helpline is available to the general public, people with cancer, carers, and health professionals. On a day in September, 2005 the Helpline ran a Prostate Cancer Call-in. In 12 hours, 865 calls were received, 831 of which were specifically about Prostate Cancer. The majority of callers were men over the age of 50 years. 73% of the calls were about screening, symptoms or prevention. A further breakdown of calls showed 40% were about screening or self examination, 24 % about symptoms, 14 % about treatments, 9% about prevention or risk, 6% about diagnosis, 3% about recurrence, and 4% fell into the 'other' category.

The Cancer Council also makes available a Support and Information Package. which provides support for people with cancer. It goes to patients and carers at diagnosis, and indicates sources of emotional, practical and financial assistance. The Package was developed following research into the unmet needs of patients and carers and was made possible by funds from the Relay for Life project.

The Cancer Council Connect Program provides one-on-one peer support - either by phone or in person, - before, during and after treatment. Volunteers who man this service complete a comprehensive training program. The Cancer Council now has matching volunteers for all cancer sites.

The Telephone Support Groups provide support over the telephone as an alternative to traditional face-to-face support. People may be isolated by cancer, either geographically or due to immobility or disfigurement. The service is assisted by two highly skilled professionals. A new program for younger men with Prostate Cancer is about to get under way.

The Cancer Information Library, located at Wooloomooloo, includes books, journals, videos and audio tapes. It may be accessed for borrowing by phone or by post.

The Understanding Cancer Booklets consist of over 30 books and facts sheets. They are reliable, easy to read - and free!

Kim then turned to the Cancer Council's Research into the Effectiveness of Cancer Support Groups. This project, in conjunction with the Universities of Sydney and Western Sydney and with Westmead Hospital, was begun in 2001 and information about the findings was released in 2004. The key questions addressed were:

What makes an effective Support Group? and Why do Support Groups survive?

A subsidiary question was to find out what people say about Support Groups. Some of the answers included: that they provide a sense of belonging; that belonging is like having a surrogate family; and that they provide an opportunity for information gathering, and communication with health professionals.

Reasons why people attended Support Groups included: it gave them a feeling of not being alone; it gave access to information on current medical research, and on cancer drugs and their side effects; it was a means of learning how other people deal with cancer; and it was an opportunity to relax with others who understand.

Benefits of a Cancer Support Group to participants included: that there were improvements in psychological well-being; that people experienced changes in themselves, such as reduced anxiety; and that they felt they gained control of themselves and their disease and gave them a sense of empowerment.

Support Groups offered a positive experience to participants through opportunities for leadership roles, role modeling, and through information sharing to assist in decision making.

However, Cancer Support Groups are not necessarily for everyone. The top reasons given for not attending a Support Group were:

the person felt it was time to move on

there was enough support already; for example, within the family

there were practical issues, such as the ability to get to the Group

the individual had had previous bad experiences with groups; for example, in their local P&C.

not wanting to find people 'like me'

personality or coping style problems

dissatisfaction with the Group itself.

People who had previously belonged to a Support Group but who no longer attended, gave some of their reasons for giving up as not wanting to revisit their cancer experience; that they had had enough; that they didn't want to meet 'people like me'; or they had personal reasons for not continuing.

Where to from here? Further research is planned by the Cancer Council into the role of Cancer Support Group leaders and into the role of carers. Also, the Cancer Support Group Resource Kit is under review. Other activities include the Cancer Support News and the establishment of the Cancer Support Group Network

3. Research in Progress

The medical Psychology Research Unit at Sydney University is currently undertaking a research project into the Needs, Challenges and Rewards of Cancer Support Group Leaders. 'The purpose of the study is to develop and implement support systems for cancer support group leaders. ' Leaders are being sent a questionnaire and invited to submit comments about their experiences. Our Northern Beaches Group has been invited to participate.

4. PCFA

(a) Minutes of the NSW Support and Advocacy Committee (SAC) Teleconference held on Wednesday, 22/03/06 are available for perusal.

(b) An invitation is extended to Support Group members to attend the official opening of the Brachytherapy Unit at the Mater Hospital by Professor Marie Bashir, Governor of NSW, at 6.30pm on Friday, 2 June. Please advise the PCFA if you wish to attend.

5. INFORMATION UPDATE

Publications Received

(i) Research Bulletin: Support Groups. The Cancer Council, NSW.

(ii) Prostate Cancer: Should I Be Tested? Mr PHIP Series, No. 1. The Cancer Council, S.A.

(iii) Prostate Cancer: Interpreting the PSA Test. Mr PHIP Series, No. 2. The Cancer Council, S.A.

(iv) LifeTimes: news from National Seniors Foundation, Issue 2, 2006. National Seniors Foundation. (This Issue deals with matters relating to Prostate Cancer.)

(v) CANCER AUSTRALIA BILL 2006. Second Reading Speech, 30/03/06. The Honourable Mr Wayne Swan. Hansard Report.

(vi) Margo, Jill. Avoiding the barbs of prostate cancer. Australian Financial Review, Thursday, 30/3/2006.

(vii) Prostate News, Issue 25, March 2006. Prostate Cancer Foundation of Australia.

(viii) The Word Is Out. Vol. 5, Issue 1, Summer 2005-2006. Cancer Support Centre - Jacaranda Lodge Newsletter.

(ix) Overington, Caroline. Carers of cancer victims suffer too. Australian, Wednesday, 11/1/2006.

Copies of all the above are available for borrowing from the Lending Library.

YOUR CONTACT NUMBERS

Program Co-ordinator Dr Peter Moore Northern Beaches Palliative Care 9997 3555	Group Leader John Conroy 9918 9358 conroyjs@bigpond.com
NSW Cancer Council Cancer Support Helpline 13 11 20	Prostate Cancer Foundation of Australia 1800 220 099