September 2002

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0> <table cellpadding=0 cellspacing=0 border=0><tr> <td valign="top" height=120 BGCOLOR="#CCCC99" TEXT="#080000" bgproperties="fixed" background="03f8dfe1esnpes.jpg"> <div> <B>September 2002</B></div> <bR> <div> <A HREF="id3.htm" TARGET="_top" TITLE="Calendar"><U><B><U>Calendar</U></B></U></A><A HREF="id3.htm" TARGET="_top" TITLE="Calendar"><U><B> </B></U></A><B>  |   </B><A HREF="id60.htm" TARGET="_top" TITLE="Carers Group"><U><B><U>Carers Group</U></B></U></A><B>   |   </B><A HREF="id2.htm" TARGET="_top" TITLE="Group Guidelines"><U><B>Group Guidelines</B></U></A><B>   |  </B><A HREF="id61.htm" TARGET="_top" TITLE="Library"><U><B> </B></U></A><A HREF="id61.htm" TARGET="_top" TITLE="Library"><U><B><U>Library</U></B></U></A><B>   |   </B><A HREF="id4.htm" TARGET="_top" TITLE="Current Newsletters"><U><B><U>Current Newsletters</U></B></U></A><B>   |   </B><A HREF="id16.htm" TARGET="_top" TITLE="Archived Newsletters"><U><B><U>Archived Newsletters</U></B></U></A><B>   |   </B><B><U>Pamphlets</U></B><B>  |  </B><A HREF="index.htm" TARGET="_top" TITLE="Northern Beaches Prostate Cancer Support"><U><B><U>Hom</U></B></U></A><B><U>e</U></B></div> </td> </tr><tr> <td valign="top" height=360 BGCOLOR="#CCCC99" TEXT="#080000" bgproperties="fixed" background="03f8dfc3.jpg"> <div> <B><U>NEWSLETTER</U></B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>No.5. September, 2002</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>1. REPORT OF THE MEETING HELD ON: Tuesday, 6 August</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Eighteen members and their partners/carers were present to hear Professor J. Miles Little and Ms Emma-Jane Sayers, from the Centre for Values, Ethics and the Law in Medicine at Sydney University speak on Surviving Cancer.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Professor Little began by pointing out that they realised that while they were talking to us as a group of cancer survivors, what they both had to say to us extended to those under treatment also. He next gave some background to the work being done at the Centre. This arose from getting people who had had cancer to talk about their story. It soon became very clear that those who had been cured had problems in their lives needing to be dealt with: challenges to their identities, relationships, friendships, values. These people were not only those who had had prostate cancer but all kinds of cancer: breast cancer, bowel cancer, leukemia and so on. Professor Little indicated that the evening's session would be looking at cancer survival in general, perhaps with some examples from bowel cancer, but he hoped that he would get some feedback from the members of our Prostate Cancer Support Group to suggest any possible differences.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Emma-Jane Sayers then gave a brief account of her own experiences. She is a survivor of Hodgkin's Lymphoma, which struck her while she was at university studying law. She has been free of the disease since 1996. Like other cancer survivors, Emma has been through the stages of diagnosis and treatment and is now living in remission; however, there is always the possibility of recurrence.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Ms Sayers then presented aspects of cancer survival under five headings:<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> i). Survival. After diagnosis and treatment, and being apparently cancer free, the survivor can be regarded as 'one of the winners'. He orshe is assumed to be OK but becomes a member of a neglected group.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> ii). Cancer Survival State (CaSS). How do the survivors feel about themselves? They now see themselves as bearing an adhesive cancer label, - a label that sticks. They view their body as a house of suspicion: therelation of trust with their body is breaking down. If there is a new ache or pain, it raises the immediate question: 'Is it coming back?' There is also a communication alienation from others, - a difficulty recreating for others what you have experienced. There is a feeling of being disconnected. So the survivor becomes a kind of philosopher, a role that has been triggered by the cancer. You begin pondering questions like: 'Why am I here?' 'What does life mean?' 'What should I be doing with my life?'<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> iii). Accountability and Debt. This concerns the social context of survival, - the way other people think. Survivors think how lucky they are still to be here, and wonder how to pay back the debt they owe. But what is the debt? To whom should it be paid? Other people see the survivor as fortunate ("You've been lucky; you owe something"), or indebted ("We've looked after you when you were sick; now it's our turn"), or transformed ("You've survived; get yourself a new life"), or a hero ("You've conquered death; what's your secret?" - You're treated rather like Stuart Driver, but all you've done is to cope the best way you can), or as normal ("You're cured; just get on with it" - but it's not that easy.)<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Emma again gave something of her own story, - how she tried to get back to her law studies when she was well again. It was OK for a bit, but then it was not so simple, though others around couldn't see why not. She wasn't the same. Cancer is like being a virgin: once you've lost it there's no going back to where you were before!<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> iv). Miles Little then picked up the thread under the heading of Identity; that is, the sense of being this person in this body with this story. The sense of constancy of our identity experiences change and difference as a result of our cancer experience. There is a loss of continuity of our embodiment, our memory of our past (which we reconstruct so as to give it meaning in the light of the cancer), and of our future memory. This future memory is not the same as anticipation or plans or aspirations, - what we want to do. It is what it will be like to live the life we imagine and how we will look back on that life. It is the meaning we want to assign to the future. The survivor expresses this loss of future memory through thoughts like: "I've got nowhere to look for my future now", or "I have to really think about my future;I can't do what I used to". It is the totality of the cancer challenge, the disruption of past memory. It challenges everything in the continuity of past identity. This loss of identity can be profoundly unsettling, and 25% of cancer survivors suffer severe distress. Recovering or re-creating identity is hard work and fatigue is common. Part of this is due to the mental work involved in identity reconstruction.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> v). Intimacy/dysintimacy. Change in identity can be hard work for others to understand. The Centre for Values, Ethics and the Law in Medicine undertook a detailed study of 10 cancer survivors: five men and five women. Of the men, two subsequently became divorced, one lived in a very strained relationship, one had a serious fight with his partner - though things became better after two years, and one remained in a stable supportive relationship. About 40% of men who are cancer survivors go through a relationship break. Of the women, one was in the position of carrying the rest of the family, one was in a reasonable but imperfect relationship (she claimed that she couldn't get her partner to understand), one became isolated from the family and never once referred to her husband during interviews, one, sadly, was widowed early, and one remained in a stable supportive relationship.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Families, partners, lovers, friends, - but not health-care workers, - share your private space with you to provide support. The things that challenge intimacy in survivorship are the disruption of your sense of identity, and the challenge posed by the experience of the Cancer Survivor State (CaSS) for the persistence of close relationships. The relationship between the survivor and his CaSS is invisible to intimate outsiders. CaSS can be regarded as a prism through which you gain a new vision of close associates. There is a disparity between what you, the survivor, see and what the persons who are intimate with you see, and so dysintimacy results. To understand survival, it has to be recognised that the cancer process, CaSS, expectations, sense of identity, and the fact that intimate relationships are challenged are, all of them, together in post-cancer distress. So, when you are in remission, the news is mixed. There is good news and bad news. It is the beginning of another chapter.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> There was a lot of discussion arising out of the presentation. One member of the group pointed out that one of the difficulties we face as prostate cancer patients is that we are not obviously ill, but there is a great deal happening in our minds. Professor Little agreed that this was common. How can we change it? We can't go round wearing a notice saying "I'm sick", or putting our arms in a sling. It's very frustrating. Another member said that friends don't know what to say if you try talking about it. It's difficult for them to deal with the fact that you are confronting your own mortality. Professor Little said that it was commonly assumed that in a crisis, women talked and blokes coped. The value of Prostate Cancer Support Groups was that they enable men to give expression to their emotions. A third member pointed out that while he was given material to read by his urologist, there was a lack of information available for families. They need to know something about living with someone who has cancer and living with someone after cancer treatment.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Professor Little and Ms Sayers left behind a pamphlet summarising what they had said, and this is available for anyone who would like a copy.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>2. VIDEO: A guide to Radiation Therapy.</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Dr Richard Foster, our speaker at the July meeting, left behind a video on Radiation Therapy. It is produced by the Sydney Radiotherapy and Oncology Centre and the Central Coast Radiation Oncology Centre, and deals with the treatment of a range of cancers , including prostate cancer, by radiation therapy. As well as the overall narrator, several medical professionals (a surgeon, radiation oncologists, radiation therapists and a registered nurse) explain different aspects of the treatment. These fall under the two headings: 1. What Is Radiation Therapy? and 2. Undergoing Radiation Therapy (with sub-headings: a) Treatment planning, b) The treatment itself, and c) Follow-up after treatment). The video runs for 15 minutes and is a useful overview if you are considering this treatment. The video is also available for borrowing, free of charge. Just contact me.(John Conroy.)<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>3. RESEARCH</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Our Group has again been approached to join in an Australia-wide research project. Andrology Australia (Australian Centre of Excellence in Male Reproductive Health) is conducting a national survey of education and information distribution activities in the area of male reproductive health. The aim of Andrology Australia is to improve knowledge and provide education to the Australian public and health professionals on a variety of male reproductive health issues including prostate disease (including prostate cancer), testicular cancer, male infertility, erectile dysfunction, androgen deficiency and steroid use.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> The aim of the survey is to gain a comprehensive understanding of past, current and planned men's health education activities to establish clear future directions for education in male reproductive health We have completed and returned the survey form and sent copies of some of our materials.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>4. MORE USEFUL WEBSITES</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Andrology Australia (see above under Research) has it own website:<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <A HREF="http://www.andrologyaustralia.org" TARGET="_top" TITLE="http://www.andrologyaustralia.org"><U><B><U>www.andrologyaustralia.org</U></B></U></A><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> There are seven links on the home page to aspects of male health, including one for prostate disease. This page is fairly sketchy, but if you use the Search this site button and follow the prompts for prostate disease, you will find quite a bit of information. It is also possible to download their latest Newsletter (the Winter 2002 issue is a Focus on Erectile Dysfunction). I use an iMac computer and I found the download difficult. You may need to download the Adobe Acrobat Reader first. There are another eight links on the Home page giving information about the organisation.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>5. COMMONWEALTH CARELINK CENTRE</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> The Northern Sydney Commonwealth Carelink Centre is 'a part of the Commonwealth Carelink Program' and offers 'all Australians a convenient, central link to information about care and community services for the frail aged and those with a disability'. Our Northern Beaches Prostate Cancer Support Group is now registered with this program, as a result of which we hope that information about our support services will reach an ever wider audience.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>6. REMINDERS: </B>Dates of next meetings (in the Palliative Care Cottage, Mona Vale Hospital)<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> i). September Meeting (6.30pm, Tues., 3 Sept.): Dr Michael Lowy from the Australian Centre for Sexual Health: The Effects of Prostate Cancer on Sexual Function.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> ii). October Meeting (6.30pm, Tues., 1 Oct.): Ms Joanna Harnett from the Northern Beaches Care Centre: Eating Well with Cancer - Diet and Nutrition<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> All friends, partners, carers, family are welcome at all our meetings. (Refreshments served.)<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>YOUR CONTACT NUMBERS</B></div> <bR> <div> <TABLE BORDER="0" CELLPADDING="2" CELLSPACING="1" WIDTH="664" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BOX" RULES="ALL" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 116 WIDTH="357"><div> <U>Program Co-ordinator</U> </div> <bR> <div> Dr Peter Moore </div> <div> Northern Beaches Palliative Care<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> 9997 3555 </div> </tD> <tD VALIGN=TOP WIDTH="296"><div> <U>Group Leader</U></div> <bR> <div> John Conroy<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> 9918 9358<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> <A HREF="mailto:conroyjs@bigpond.com" TARGET="_top" TITLE="mailto:conroyjs@bigpond.com"><U><U>conroyjs@bigpond.com</U></U></A></div> </tD> </tR> <tR> <tD VALIGN=TOP HEIGHT= 89 ><NOBR><div> <U>NSW Cancer Council Cancer Support Helpline</U></div> <bR> <div> 13 11 20<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> </NOBR></tD> <tD VALIGN=TOP><NOBR><div> <U>Prostate Cancer Foundation of Australia</U></div> <bR> <div> 1800 220 099</div> </NOBR></tD> </tR> </TABLE></div> <bR> </td> </tr></table></body>