Advanced Breast Cancer Group: A place where death is not a dirty word

A group of women with terminal cancer are helping each other live their best lives.

For some of the women in the Advanced Breast Cancer Group, breast cancer snuck up suddenly, pouncing when it was least expected. For others, it arrived long ago, and remains, omnipresent and ever growing. For others still, it's an almost forgotten foe from the past, remerging with devastating ferocity.

For all of them it's terminal. Their breast cancer has metastasised; spread beyond the breast and lymph nodes to other parts of the body such as the lungs, liver, bones or brain. They have received the worst news imaginable and now face their own mortality.

Head-on, but not alone, thanks to the Advanced Breast Cancer Group, the free support network in Queensland, run by psychotherapists Mary O'Brien and Pia Hirsch.

Central to the variety of support services the group offers - including workshops for women in the group and their families, and documentary resources - is the support group.

Founded in 1999, the group meets weekly, some in person, some via phone or video call (all meetings are via video call currently, due to Covid19). It provides a space of genuine understanding and empathy for women who have one unenviable thing in common: they have all been told they are going to die.

The group gives the women an opportunity to meet others with the same diagnosis. It's an opportunity to learn how others are managing - or not managing, as the case may be - everything that comes with a terminal diagnosis: the cancer itself, the treatment, the decisions, the discussions, the side effects.

There is no set agenda, they are free to talk about anything they like: how they are going, treatment, relationships with family and friends, sex, finances… nothing is off limits, nothing is too much information.

They also talk about death. They really want to talk about it, and for many, the group is one of the few places they feel they can talk about it. They say that the ability to talk about death is vitally important. When they can talk about it openly, death becomes less frightening, a little easier to face.

Sometimes, the "death" is one of their own. This is an incurable illness, so women in the group die. It's a devastating fact of life, but members say that along with sadness, the death of a friend also brings a deeper understanding of mortality, and their own situation. They continue to learn and grow from each other, even in death.

It can be a challenging group to be part of at times. It comes with the territory that it can be confronting and upsetting. No getting around it. However, it can also be fun and funny, silly and irreverent. Most of the members say their terminal diagnosis also comes with a new understanding of how precious life is, and a dedication to making the most of it and enjoying every minute.

So, together, they laugh, they cry, they get angry, they say everything, they say nothing.

More than anything else, they share. Share their time, their stories, their support, their empathy, their knowledge. And through this group, they make strong and deeply meaningful friendships which nourish and sustain in a way no other support can, through what some have described as "the rollercoaster of a terminal diagnosis".

"Being told one has a disease for which there is no cure, only palliative treatment, is a huge emotional challenge," one member said. "It has been of great benefit to me to be able to talk about this and the related emotions with women who are dealing with the same issues.

"With the women in this group, one is able to really be oneself and be truly honest. This is a burden shared and therefore alleviated to a great extent."

Over coming weeks, MyTribute will share the deeply personal stories of some of these women, to shine a spotlight on metastasised breast cancer, and the incredible work of the Advanced Breast Cancer Group, while addressing some of the many issues faced by those with a terminal diagnosis - talking to family members, dealing with the diagnosis, living with a terminal illness, palliative care, saying goodbye, mementos and love notes, planning a funeral.

The stories are sad. Again, it comes with the territory. But they are also inspiring and funny, and it's our honour to tell them.

To learn more, or donate to this invaluable group, go to advancedbreastcancergroup.org.au

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