Willow: info

'Living' Newsletter - Issue 14, Summer 2005

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The 4th World Conference on Breast Cancer, Halifax — June 8 -12, 2005
by Bonnie Bassett-Spiers

WOW! What a gathering! About 650 strong gathered in Halifax for the 4th World Conference on Breast Cancer from June 8th to 12th to celebrate life and to support one another. There were women-and men from all over the world, along with a very strong Native Peoples contingent from Canada and the U.S.

The central themes of the conference were Community, Culture and Connection. The diversity of each culture and community certainly were reflected in the various plenary sessions, workshops, poster presentations and open space meetings. All delegates connected through sharing of information on all aspects of breast cancer as well as sharing of ideas and knowledge. In some ways, it felt like one gigantic support group, with the spirit of camaraderie being very potent.

I had the great honour of presenting The Forgotten Community: Engaging the Metastatic Breast Cancer Community — Issues & Perspectives. With this presentation/workshop my objective was to call attention to the metastatic community largely being forgotten due to much fear . However, a new perspective needs to emerge due to an improvement in survival rates over the past three decades, largely attributed to better treatments.

To my delight the presentation/workshop was well attended and the audience participation was fantastic.

I began the session by asking the audience what feelings or thoughts first come to mind when they think of metastatic breast cancer. They quickly started throwing out words and phrases faster than I could record them and here is what they were: Helpless, Unbalanced Attention, Time Left, Pain, Hurry Up!, Fear, How Much Help to Accept?, Feeling Betrayed, Waiting, Alone, One Day at a Time, Uncertainty, Unwelcome, Abandoned and Angry. However, the very first word that was uttered was the word, Death. So, not surprisingly, this still is what is conjured up when we think of metastatic breast cancer. The workshop's aim again, was to draw attention to the myth of the automatic death sentence and to challenge this myth with a new perspective. As a result, this forgotten community could be hopefully engaged and brought into the fold of the entire breast cancer community.

Once awareness of this new perspective of people living with mets was reviewed, I was then onto raising the question of how do we then engage the metastatic breast cancer community since, according to the improved survival trend, we are not going to go away anytime soon. I shared my thoughts regarding what needs to happen and then I turned the question over to the floor. I really wanted their ideas because they were coming from a variety of backgrounds: early breast cancer survivors, people living with mets, health care providers and people from other cancer organizations. The following are their ideas on how to engage the metastatic breast cancer community:

Community Consultations
Media Attention
Push people living with metastatic disease into the forefront
Celebrate Us!
Home Visitation-to newly diagnosed people with mets by those who are stable
General breast cancer service agencies and organizations clearly advertise that they provide services to those with mets
Provide a metastatic breast cancer kit to those who are newly diagnosed with mets
Those of 'us' who are stable take on some responsibility for the entire community
Provide special training to oncologists and other cancer specialists re: communicating with their patients about metastatic disease.
Also, provide support to health care providers who are having difficultly coping when their patients relapse.

These were just some of the incredible ideas that the audience came up with. Perhaps enough here for a follow-up session to try to put some of these ideas into action. I will do my part to keep the fires burning on this issue and see where it leads us.

Another incredible happening was the ability to finally meet several women whom I've had the privilege of speaking to over the phone from Willow. Some of these women have been receiving "Living" for years and it was icing on the cake to be able to put a face to a name and a voice and to connect in a very special way.

All in all, it was a very successful conference. And I came away with a sense that finally there really is more happening out there for people living with metastatic disease. I could leave Halifax feeling satisfied that we may not be the forgotten community much longer. Yet, this is only the beginning and we need to continue raising awareness, until the word, 'death', no longer automatically comes to mind when people think of metastatic breast cancer.

*This article may not be reproduced in any way except by written permission by the author.

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Man to Man
by Carl Morgan

Early in December 2001, Gloria Morgan of Windsor was diagnosed with breast cancer-and her husband, Carl, suddenly found himself cast in the confusing, unfamiliar and often daunting role of being a male caregiver.

There were two immediate problems: Morgan knew absolutely nothing about breast cancer, and not much more about being a caregiver. Being an avid reader he immediately picked up all the material he could find in text and on the Internet in an effort to understand the mysteries of breast cancer and soon realized that everything he found was written for and about women.

"I had absolutely no concern with that, that's the way it should be", Morgan says-"but what did trouble me was there was nothing that spoke to male caregivers particularly about such issues as the psychological, physical and emotional impact this disease has on women. I was so naïve that it took me a while to realize that breast cancer could actually kill my wife. It was a real shock to me-and I assume to many other husbands as well…"
Morgan first checked with others involved with cancer care and research and confirmed that there was absolutely nothing on the Canadian market that was of specific interest and value to men.

"I felt this was a serious void and since I was a journalist (retired) by profession, I decided that I could help change that, and began writing a guide book titled: MAN TO MAN...A Practical Guide for Male Caregivers When Breast Cancer Strikes Their Loved Ones. Not only did I draw on my own experiences, but I spoke to three other husbands who had gone through the same horrific dilemma and began putting the guidebook together."
MAN to MAN is NOT a medical advice book; it is a 60-page collection of useful anecdotal information that talks about a multitude of basic issues involving breast cancer and the challenges that face the husbands.

No fewer than 16 people read the manuscripts and offered suggestions. These included lay people, family physicians, surgeons and oncologists. It received two thumbs up from every quarter.

Part way through the writing, it occurred to Morgan that he didn't have enough money to publish the guidebook, nor did he know anyone with deep enough pockets to underwrite the cost. That led to the idea of launching a letter-writing campaign to friends, relatives, foundations and service clubs.

"I had no idea whether I would come up with enough to publish even 500 copies especially since I didn't have anything to actually show anyone. I could only try to sell the concept."
The cheques started coming in, slowly at first and then picked up momentum. By the time the last cheque was in, Morgan had received more than $25,000...enough to print 11,000 copies. Carey Wheeler of Wheeler Printing in Windsor, whose wife was also a breast cancer survivor, added another 1,000 free of charge.

Much earlier, Morgan had decided that the book would NOT be for sale. It would be given away free to whoever requested copies. He rationalized that if it was for sale, most men would no hear about it and of those who did, most would not bother buying it. To be successful, Morgan wanted it to find its way into the hands of as many people as possible.

The first copies off the press were received in January, 2004 and by year's end, he had distributed (free of charge) roughly 8,000 copies-most of them in Ontario. The requests ranged from as few as one copy to 400 (Princess Margaret Hospital). Since Morgan doesn't have enough money to pay mailing costs, he invoices the recipients for postage with a small fee for handling.

There are just about 3,000 copies left, but anyone who wants/needs one or more can simply contact Morgan by phone: (519) 735-6188 or email cmorgan155@cogeco.ca.

On Dec. 17th last year, the Morgan's celebrated the third anniversary of Gloria's surgery and as of this date, there are no negative signs of the cancer returning.

*This article may not be reproduced in any way except by written permission by the author.

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Exercise Safe and Effective for Women with MBC
This may not be news for many who continue to be able to integrate exercise into their lives, but, "exercise has been shown to be safe and effective for decreasing physical and psychological symptoms and improving quality of life in cancer patients."

Dr. Susan Harris and M.Sc. Student, Kim Keays, School of Rehabilitation Sciences, UBC, reported on an exercise-based rehab program at the Ottawa Regional Cancer Centre, which includes patients with metastatic disease:

"Women with metastatic breast cancer are at risk for anxiety and depression which, if not addressed, can lead to decreased QOL (quality of life). Emotional well-being (or mood), physical rehabilitation status and QOL are interrelated. Exercise may be an effective means of managing both the emotional and physical rehabilitation aspects of QOL for women with late stage disease."
Harris and Keays report that as long as precautions for exercise during and after treatment are taken, those with mets, should be able to exercise at low to medium intensity."
From: "Exercise for Women with Metastatic Breast Cancer", Keays, K. & Harris, S., Abreast in the West., Fall 2004.

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New Resources
The Navigational Guide For Persons with Advanced Breast Cancer was launched on the final evening of the 4th World Conference on Breast Cancer. It is a guide for those receiving a diagnosis of advanced breast cancer find the resources and the support that, as we know, they desperately need. This new resource was funded by the CURE Foundation and was developed by the Community Capacity Building Committee and Public Health Agency's National Working Group on Recurrent/Metastatic Breast Cancer. It will be distributed nation-wide to the offices of cancer specialists, cancer centres and cancer organizations, including Willow, over the summer months.
For a copy, please contact Willow, 416-778-5000 or 1-888-778-3100.

Also, look for AdvancedBC.org-a new resource for people living with advanced breast cancer. This new website is still under construction. Look for more on the website www.advancedbc.org this Summer 2005.