What Can I Say

At the end of 2019, at the Advanced Breast Cancer Group workshop, women from the group as well as group therapists Mary O’Brien and Pia Hirsch participated in an activity – ‘what can I say’ – designed to break down barriers to talking about metastatic cancer. They answered questions and responded to comments about living with metastatic breast cancer.

Their responses were recorded and are available to view below. We are grateful to the women for their honesty and openness. Their overwhelming message was – ‘don’t avoid the elephant in the room’ – it’s okay to talk about it

1 - Effective Communication

Cancer brings with it a myriad of complex problems, not least of all experiences the person living with cancer has with others in their lives. In this 1st of 4 videos Tom talks about people living with cancer having control over how they share their experience with other people in their lives.

2 - Reading Between the Lines

In any social conversation, it is often a matter of reading between the lines to truly understand what the other person might be asking – what do they really want to know. This is particularly true when it comes to conversations about cancer. In this video, Tom aims to take the pressure off what might be a confronting or difficult conversation about cancer. He suggests ways to hear beyond the actual words to understand the meaning behind them. Do they really want to know about your cancer treatment, or do they simply want to know that you are alright? It is about understanding the questioners’ needs whilst protecting and standing up for your own. This is the 2nd in a series of 4 videos sharing insights and guidance about how to talk about cancer on your own terms.

3 - What does the questioner really want to know

Extending on from the previous video ‘Reading between the lines’ Tom further explores the concept of hearing the meaning that sits behind the words used in a question. Understanding your audience and changing tack depending on who you are talking to is a big part of this. Tom also touches on the intimacy of conversations with tears and talks about the value of those connections. This is the 3rd in a series of 4 videos sharing insights and guidance about how to talk about cancer on your own terms.

4 - The benefit of sharing experiences and asking for help

So far in this series, we have talked about talking with people living outside the direct experience of living with a metastatic diagnosis. In this video, Tom discusses the benefit of talking to others living a similar experience. This is true of our understanding over the past 21 years of the Advanced Breast Cancer Group – that with familiarity comes safety and a level of solidarity and hope. The important take away message from this final video is to know there is always help if you need it – be open to ask for and receive help – it can come from a range of places and can be a powerful source of emotional support. This is the 4th in a series of 4 videos sharing insights and guidance about how to talk about cancer on your own terms. The series can be watched by visiting https://www.advancedbreastcancergroup.org.au/

What Can I Say? LEONIE

The purpose of 'what can I say' is not to put barriers up on questions or comments, but to break them down. The caution surrounding discussions about terminal disease generally leads to a total avoidance of it. Which, as Leonie points out in this video is the worst thing someone could do. Leonie shares not only her experience talking about her diagnosis, but also the very real and personal reaction she had when she found out about it, and the strength and solidarity she feels in being part of the ABCG.

What Can I Say? ALISON

Alison is a close friend of one of our members, Gerry, and here she shares how she answers questions about Gerry whilst still respecting the privacy of her friend. And how much they love coffee!

What Can I Say? GERRY

In this video, Gerry answers a question about whether she has feelings of guilt when talking to loved ones about how she might be feeling. She also talks about how to respond to friends who have difficulty knowing what to say.

What Can I Say? LYNETTE

We have heard so many times how much the women in the group support each other in learning to live with a metastatic disease. Changing that mindset of living with rather than dying from, is something Lynette expresses in answering a question about planning for the future. Lynette also responds to a rather blunt comment based on her own personal experience.

What Can I Say? DI

In this video, Di shares how open she is to talk about her diagnosis and what she is going through, when someone asks. Di also tackles one of the more difficult questions asked; "what are your thoughts about death".

What Can I say? Importance of talking

Comment: "oh well, it could be worse" Lynette expands on this comment by looking at the intent behind it (and any other question or comment), sharing her thoughts on responding to what could be considered insensitive.

What Can I Say? Living with MBC

Question: "You’re so brave, how do you keep going?" For Leanne, it’s not a question of bravery, but rather one of choice and purpose, to really live with metastatic breast cancer, not to die from it.

What Can I Say? Impact of research

Comment: "But they are spending so much money on research" Lorraine says 'so they should. Continued research is so important as it may not yet cure metastatic breast cancer, but it enables women to live longer and with better quality of life.

What can I say? Starting a conversation

Question: "If someone didn't know what to say, how would they start a conversation with you about cancer?" The best thing someone can say - is just to say something … don't worry so much that you avoid the cancer elephant in the room altogether.

What Can I Say? Affecting and inspiring

Question: "Isn't it depressing running a group like this?" For Mary and Pia, depressing is not a word they would use to describe being a part of the ABCG.

What Can I Say? Describing ABCG

Question: "Isn't a group like this depressing?" Mary takes a slightly different approach to the question of what is considered 'depressing' … referencing the data and results from their research which shows that emotional wellbeing of women in the ABCG generally improves over time.

What Can I Say? Lorraine

Lorraine reinforces the importance of continued research into breast cancer and the benefits she has received from the extra knowledge gained through ongoing research. Lorraine also responds to a question about living with pain, sharing her experience of putting up with pain when she shouldn't.

What Can I Say? Emotional outcomes

From Mary and Pia’s perspective, 'depressing' is not a word that describes either being a therapist or a member of this group. It is challenging, confronting, inspiring and many other things, including fun at times, but it is not depressing.

What Can I Say? When a woman dies

Question: "what is it like in the group when a woman dies?" In this video Mary and Pia talk about the experience of losing a member of the group.

1 - The Statement of Choices

Q&A discussion with: Dr. Darshit Thaker - Oncologist and Palliative Care Specialist Dr. Arron Veltre - Palliative Care Consultant ABC Group Workshop, March 2019

2 - Oncology and Palliative Care

Q&A discussion with: Dr. Darshit Thaker - Oncologist and Palliative Care Specialist Dr. Arron Veltre - Palliative Care Consultant ABC Group Workshop, March 2019

3 - The Groundswell Project

Q&A discussion with: Dr. Darshit Thaker - Oncologist and Palliative Care Specialist Dr. Arron Veltre - Palliative Care Consultant ABC Group Workshop, March 2019

4 - Dealing with the side effects of chemo

Q&A discussion with: Dr. Darshit Thaker - Oncologist and Palliative Care Specialist Dr. Arron Veltre - Palliative Care Consultant ABC Group Workshop, March 2019

5 - Explaining Palliative Care

Q&A discussion with: Dr. Darshit Thaker - Oncologist and Palliative Care Specialist Dr. Arron Veltre - Palliative Care Consultant ABC Group Workshop, March 2019

6 - Demystifying Palliative Care

Q&A discussion with: Dr. Darshit Thaker - Oncologist and Palliative Care Specialist Dr. Arron Veltre - Palliative Care Consultant ABC Group Workshop, March 2019

7 - Bringing a friend Helps

Q&A discussion with: Dr. Darshit Thaker - Oncologist and Palliative Care Specialist Dr. Arron Veltre - Palliative Care Consultant ABC Group Workshop, March 2019

8 - Pain Management

Q&A discussion with: Dr. Darshit Thaker - Oncologist and Palliative Care Specialist Dr. Arron Veltre - Palliative Care Consultant ABC Group Workshop, March 2019

Q1 - Understanding Advanced Breast Cancer

Understanding advanced breast cancer is not simply about the disease itself, but the journey (or detour) from diagnosis for the patient, their families and their medical team. In this video Dr Jain reflects on the difficulty associated with advanced breast cancer particularly in accepting that it is a disease that cannot be beaten.

Q2 - Why can't Advanced Breast Cancer be cured?

QUESTION TWO: In this video Dr Jain’s uses an analogy of trying to get rid of weeds in a garden, as a way of explaining the difficultly of eradicating metastatic cancer cells in the body.

Q3 - Different Cancer Types and Treatment

QUESTION THREE: Dr Jain talks about the different types of breast cancer and their sensitivity to treatment, and why response to treatment in patients with advanced breast cancer decreases over time. He also emphasises that the relationship between quantity and quality of life is a personal decision which needs to be respected.

Q4 - Immunotherapy

In this video, Dr Jain is responding to a question from the group about immunotherapy and its relationship to breast cancer treatment.

Q5 - Alternative Therapies

QUESTION FIVE: In this 5th video, Dr Jain presents his thoughts about alternative therapies and particularly the importance to share any plans about using alternative therapies with your oncologist.

Q6 - Aspirin

The many roles of Aspirin are discussed by Dr Jain in this video, where he gives a general guide with respect to research into its effectiveness in breast cancer, particularly in early breast in managing the development of metastasis.

Q7 - Turmeric

QUESTION SEVEN: A question came from the audience about the increased conversation about health, cancer and the effects of turmeric. Dr Jain’s response centred around the need for clinical evidence, particularly in recommending turmeric as a having a viable health benefit for patients.

Q8 - Palliative Care

QUESTION EIGHT: In discussing Palliative Care, Dr Jain recommends an earlier relationship with it by including it as part of a patients integrated cancer care programme. He stresses that it is no longer associated with end of life but rather as supportive care soon after diagnosis and throughout treatment. Overall though, he emphasises the very personal decision about engaging with Palliative Care for patients.

Q9 - Bones Metastasis

QUESTION NINE: In this video, Dr Jain responds to a question about bone metastasis and treatment, including bone strengthening drugs. He also discusses the benefit of prophylactic intramedullary nails in weight bearing bones.

Q10 - Flare Response

QUESTION TEN: Expanding on the response in the previous video about bone metastasis, Dr Jain explains flare responses or healing response in bones.

Q11 - Exercise and Diet

QUESTION ELEVEN: In this final video in the series with Dr Jain he gives his thoughts on diet and exercise and their role as part of treatment or simply good health and improved quality of life.

Dr. Robyn Cheuk - Radiation Therapy Explained

Dr Robyn Cheuk is a Radiation Oncologist at the Royal Brisbane and Women’s Hospital, Queensland. In these video clips she addresses questions raised at the workshop held by the Advanced Breast Cancer Group in October 2018.

Dr. Robyn Cheuk - Planning for Radiation

Dr Robyn Cheuk is a Radiation Oncologist at the Royal Brisbane and Women’s Hospital, Queensland. In these video clips she addresses questions raised at the workshop held by the Advanced Breast Cancer Group in October 2018.

Dr. Robyn Cheuk - Proton Therapy

Dr Robyn Cheuk is a Radiation Oncologist at the Royal Brisbane and Women’s Hospital, Queensland. In these video clips she addresses questions raised at the workshop held by the Advanced Breast Cancer Group in October 2018.

Dr. Robyn Cheuk - The Gamma Knife

Dr Robyn Cheuk is a Radiation Oncologist at the Royal Brisbane and Women’s Hospital, Queensland. In these video clips she addresses questions raised at the workshop held by the Advanced Breast Cancer Group in October 2018.

Dr. Robyn Cheuk - Public and Private Treatment

Dr Robyn Cheuk is a Radiation Oncologist at the Royal Brisbane and Women’s Hospital, Queensland. In these video clips she addresses questions raised at the workshop held by the Advanced Breast Cancer Group in October 2018.

Dr. Marina Reeves - Food and QOL

Assoc. Professor Marina Reeves from the Cancer Prevention Research Centre, School of Public Health, addresses questions on the benefits of diet and exercise amongst women with metastatic breast cancer at Advanced Breast Cancer Group's workshop, October 2018.

Dr. Marina Reeves - Do No Harm

Assoc. Professor Marina Reeves from the Cancer Prevention Research Centre, School of Public Health, addresses questions on the benefits of diet and exercise amongst women with metastatic breast cancer at Advanced Breast Cancer Group's workshop, October 2018.

Dr Marina Reeves - Sugar and Cancer

Assoc. Professor Marina Reeves from the Cancer Prevention Research Centre, School of Public Health, addresses questions on the benefits of diet and exercise amongst women with metastatic breast cancer at Advanced Breast Cancer Group's workshop, October 2018.

Dr. Marina Reeves - What do we know about the benefits of diet and exercise?

Assoc. Professor Marina Reeves from the Cancer Prevention Research Centre, School of Public Health, addresses questions on the benefits of diet and exercise amongst women with metastatic breast cancer at Advanced Breast Cancer Group's workshop, October 2018.

ABCG Leisa 1

Metastatic breast cancer is a disease that impacts on the whole family, not only on the woman or man who has the disease. October the 13th is a day to remember them all. Throughout the month of October, we would like to increase awareness and understanding of their unique challenges by sharing a series of short clips, extracts from our film, 'Post Pink - Living with Advanced Breast Cancer'. To find out more about the benefits of a support group, click here: https://www.advancedbreastcancergroup.org.au/breast-cancer-…/ Watch the full movie here: https://www.advancedbreastcancergroup.org.au/postpinkmovie/

ABCG Graham

Metastatic breast cancer is a disease that impacts on the whole family, not only on the woman or man who has the disease. October the 13th is a day to remember them all. Throughout the month of October, we would like to increase awareness and understanding of their unique challenges by sharing a series of short clips, extracts from our film, 'Post Pink - Living with Advanced Breast Cancer'. To find out more about the benefits of a support group, click here: https://www.advancedbreastcancergroup.org.au/breast-cancer-…/ Watch the full movie here: https://www.advancedbreastcancergroup.org.au/postpinkmovie/

ABCG John 1

Metastatic breast cancer is a disease that impacts on the whole family, not only on the woman or man who has the disease. October the 13th is a day to remember them all. Throughout the month of October, we would like to increase awareness and understanding of their unique challenges by sharing a series of short clips, extracts from our film, 'Post Pink - Living with Advanced Breast Cancer'. To find out more about the benefits of a support group, click here: https://www.advancedbreastcancergroup.org.au/breast-cancer-…/ Watch the full movie here: https://www.advancedbreastcancergroup.org.au/postpinkmovie/

ABCG Pia & Mary

Metastatic breast cancer is a disease that impacts on the whole family, not only on the woman or man who has the disease. October the 13th is a day to remember them all. Throughout the month of October, we would like to increase awareness and understanding of their unique challenges by sharing a series of short clips, extracts from our film, 'Post Pink - Living with Advanced Breast Cancer'. To find out more about the benefits of a support group, click here: https://www.advancedbreastcancergroup.org.au/breast-cancer-…/ Watch the full movie here: https://www.advancedbreastcancergroup.org.au/postpinkmovie/

What Can I Say? When a woman dies

Question: "what is it like in the group when a woman dies?" In this video Mary and Pia talk about the experience of losing a member of the group.

What Can I Say? Emotional outcomes

From Mary and Pia’s perspective, 'depressing' is not a word that describes either being a therapist or a member of this group. It is challenging, confronting, inspiring and many other things, including fun at times, but it is not depressing.

What Can I Say? Lorraine

Lorraine reinforces the importance of continued research into breast cancer and the benefits she has received from the extra knowledge gained through ongoing research. Lorraine also responds to a question about living with pain, sharing her experience of putting up with pain when she shouldn't.

What Can I Say? The ABCG compilation

At the end of 2019, at the Advanced Breast Cancer Group workshop, women from the group as well as group therapists Mary O'Brien and Pia Hirsch participated in an activity – ‘what can I say’ - designed to break down barriers to talking about metastatic cancer. They answered questions and responded to comments about living with metastatic breast cancer. Their responses were recorded and over the next few weeks we will be sharing them with you. We are grateful to the women for their honesty and openness. Their overwhelming message was – ‘don’t avoid the elephant in the room’ – it’s okay to talk about it.

What Can I Say? Describing ABCG

Question: "Isn't a group like this depressing?" Mary takes a slightly different approach to the question of what is considered 'depressing' … referencing the data and results from their research which shows that emotional wellbeing of women in the ABCG generally improves over time.

What Can I Say? Affecting and inspiring

Question: "Isn't it depressing running a group like this?" For Mary and Pia, depressing is not a word they would use to describe being a part of the ABCG.

What can I say? Starting a conversation

Question: "If someone didn't know what to say, how would they start a conversation with you about cancer?" The best thing someone can say - is just to say something … don't worry so much that you avoid the cancer elephant in the room altogether.

What Can I Say? Impact of research

Comment: "But they are spending so much money on research" Lorraine says 'so they should. Continued research is so important as it may not yet cure metastatic breast cancer, but it enables women to live longer and with better quality of life.

What Can I Say? Living with MBC

Question: "You’re so brave, how do you keep going?" For Leanne, it’s not a question of bravery, but rather one of choice and purpose, to really live with metastatic breast cancer, not to die from it.

What Can I say? Importance of talking

Comment: "oh well, it could be worse" Lynette expands on this comment by looking at the intent behind it (and any other question or comment), sharing her thoughts on responding to what could be considered insensitive.

What Can I Say? DI

In this video, Di shares how open she is to talk about her diagnosis and what she is going through, when someone asks. Di also tackles one of the more difficult questions asked; "what are your thoughts about death".

What Can I Say? LYNETTE

We have heard so many times how much the women in the group support each other in learning to live with a metastatic disease. Changing that mindset of living with rather than dying from, is something Lynette expresses in answering a question about planning for the future. Lynette also responds to a rather blunt comment based on her own personal experience.

What Can I Say? GERRY

In this video, Gerry answers a question about whether she has feelings of guilt when talking to loved ones about how she might be feeling. She also talks about how to respond to friends who have difficulty knowing what to say.

What Can I Say? ALISON

Alison is a close friend of one of our members, Gerry, and here she shares how she answers questions about Gerry whilst still respecting the privacy of her friend. And how much they love coffee!

What Can I Say? LEONIE

The purpose of 'what can I say' is not to put barriers up on questions or comments, but to break them down. The caution surrounding discussions about terminal disease generally leads to a total avoidance of it. Which, as Leonie points out in this video is the worst thing someone could do. Leonie shares not only her experience talking about her diagnosis, but also the very real and personal reaction she had when she found out about it, and the strength and solidarity she feels in being part of the ABCG.