The Beacon and Inside Story - putting it out there.
Ok - so I am going to put it out there. A question among those of us with advanced disease.
Why are our stories excluded from the general articles in the Beacon? Why do we receive an insert "the Inside Story" with our Beacon with stories of those with Advanced Disease?
How does this make me feel?
- excluded, a leper within a community of lepers, lonely, forgotten, dismissed.
Why is there such a separation within this community? My experiences mostly, particularly on this network apart from the occasional instance are that woman with and healed from early disease are mostly supportive of those of us with ABC. I can't understand why there has to be a separate issue. Yes we have different needs but perhaps including these within the regular copy of the Beacon will shine a light to those within the BC community of the unique challenges we face. Yes, it may cause some fear - is that so wrong? Why the walking on eggshells? If more people were aware of the issues that people with ABC face then there may be more advocacy support in the BC community for ABC.
I would love to be more of an advocate but to be brutally frank I have to make a choice as to how I best spend my time (which I am regularly informed is limited) - what would you choose, your young children or fighting for the rights of those with ABC? If my children were older I could do more. I do what I can but my job is to be well for my children - number one priority.
So, I am wondering what others think? Do you even realise that you don't see stories about ABC regularly in the Beacon?
I challenged the NBCF on the same issue with their fundraising pages so often focusing on EBC and not ABC which is the killer. A goal of no deaths by 2030 is not going to be achieved without a focus on ABC. This month the fundraising letter came with a story about a woman with ABC - at last! And you know what - she felt guilty that she got ABC, that she had let the supporters and survivors down. Is that the type of atmosphere we create by excluding ABC women and men from the Pink Paraphernalia?
Don't mean to be a cranky pants but I'm over the grey in Melbourne, I'm over having ABC and I'm over feeling isolated among the pink.
Rant over!
Love to all.
Amanda xx
Comments
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Hi Amanda
I have EBC and I am fairly new still to this whole BC journey but I would have no issues of more information being available and out their for ABC. I remember when Cancer was a word that was never "said" but now it is and so many people are more aware both young and old.
I guess for some people ABC in scarey but so is EBC but to no where near the extent ABC is. Personally I don't have a problem with there being more stories in the Beacon and anywhere else for that matter.
It is a terrible shame that poor lady felt "guilty". We should never feel guilty that we are one of the unlucky ones.
You are a wonderful advocate and yes it is a shame you can't spend more time putting the word out there but I wholeheartedly agree your children and your family are the most important in your life and they must always come first.
Well done, take care and rant as much as you like.
Mich xoxo
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Hi Amanda
Rant away. Your message is very important. And I acknowledge that you want to focus your time and energy on your very precious children and family. So more of us should be ranting and questioning on your behalf.
I hope that I am going to be able to express my thoughts without offending anyone.
I have triple negative BC. My diagnosis is that of EBC but I am aware that the prognosis for TNBC is unknown and a challenge . I am optomistic that I will be in remission for a long time. But I am not stupid, thus I am reading and have acknowledged the possiblity of transition to ABC sooner than I would like.
I have experienced the death of three family members in the past five years. I am incredibly aware that death comes to us all. I have come to terms with this. This acceptance has in a strange way liberated me so that I am able to gather all sorts of information good and bad about BC and not feel too overwhelmed. Some of it is frightening but I fell I need to know the good and bad.
Amanda you are right. There is not enough written to assist, enable or prepare women (and men) for the transition to ABC or importantly how to live with it, and dare I say to die with it (hoping that is not too blunt).
I think that it is the possiblity of dying that makes people wary of discussing ABC. I think there are alot of people that find the discussion regarding the possibility of end of life too confronting. Therefore the simpler choice is to focus on EBC.
But I think these people forget that death is a natural phenomena. And in between diagnosis of EBC or ABC and death (whether it is 5 months, 5 years or 50 years) there is A LOT of living to do. An intelligent person wants all the help they can to enable themselves (and their families) to live to the best of their ability. Whether it is physical or mental or emotional.
This information is very important. I am of the belief that the more information that is available the better. You can choose whether or not you are going to take the information on board or ignore it, but it is your choice. Just as an individual you can choose whether or not your are going to share the information or not. But to censor the information, to not acknowledge it and allow people to make the choice, is wrong. And in the case of the individual who need the information, isolating.
To isolate a person, to make them feel that they have failed, to make them feel guilty when they are trying to cope with a disease that has been thrust upon them is wrong. Cancer, in any form, sucks. No one chooses to have it. No one has done anything to deserve it. To not acknowledge it, in all its forms, denies the "battlers" of support and understanding.To me thats very poor behaviour from fellow human beings.
So, I dont know who makes the choices in regard to articles in The Beacon, but I am adding my voice to Amandas. Tell it how it is, not how you want it to be. We are dealing with cancer, the diagnosis was the scary bit, now we just need to understand to enable us to live with it.
My rant complete.
Take care and be gentle on yourselves
Toni
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Hi Amanda
Rant away. Your message is very important. And I acknowledge that you want to focus your time and energy on your very precious children and family. So more of us should be ranting and questioning on your behalf.
I hope that I am going to be able to express my thoughts without offending anyone.
I have triple negative BC. My diagnosis is that of EBC but I am aware that the prognosis for TNBC is unknown and a challenge . I am optomistic that I will be in remission for a long time. But I am not stupid, thus I am reading and have acknowledged the possiblity of transition to ABC sooner than I would like.
I have experienced the death of three family members in the past five years. I am incredibly aware that death comes to us all. I have come to terms with this. This acceptance has in a strange way liberated me so that I am able to gather all sorts of information good and bad about BC and not feel too overwhelmed. Some of it is frightening but I fell I need to know the good and bad.
Amanda you are right. There is not enough written to assist, enable or prepare women (and men) for the transition to ABC or importantly how to live with it, and dare I say to die with it (hoping that is not too blunt).
I think that it is the possiblity of dying that makes people wary of discussing ABC. I think there are alot of people that find the discussion regarding the possibility of end of life too confronting. Therefore the simpler choice is to focus on EBC.
But I think these people forget that death is a natural phenomena. And in between diagnosis of EBC or ABC and death (whether it is 5 months, 5 years or 50 years) there is A LOT of living to do. An intelligent person wants all the help they can to enable themselves (and their families) to live to the best of their ability. Whether it is physical or mental or emotional.
This information is very important. I am of the belief that the more information that is available the better. You can choose whether or not you are going to take the information on board or ignore it, but it is your choice. Just as an individual you can choose whether or not your are going to share the information or not. But to censor the information, to not acknowledge it and allow people to make the choice, is wrong. And in the case of the individual who need the information, isolating.
To isolate a person, to make them feel that they have failed, to make them feel guilty when they are trying to cope with a disease that has been thrust upon them is wrong. Cancer, in any form, sucks. No one chooses to have it. No one has done anything to deserve it. To not acknowledge it, in all its forms, denies the "battlers" of support and understanding.To me thats very poor behaviour from fellow human beings.
So, I dont know who makes the choices in regard to articles in The Beacon, but I am adding my voice to Amandas. Tell it how it is, not how you want it to be. We are dealing with cancer, the diagnosis was the scary bit, now we just need to understand to enable us to live with it.
My rant complete.
Take care and be gentle on yourselves
Toni
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Very well said Toni. I only wish I was able to voice myself like a lot of you lovely pink ladies can. I wasn't offended by your words and I hope other people aren't either.
Information is such a huge weapon to help us deal with this disease and we need to get it out there.
Mich xo
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I would love to read more stories in my edition of the beacon around ABC.
I have EBC and I understand the fear hearing about ABC creates. but it is the reality of our lives i think. we have to deal with our pink sisters getting diagnosed with ABC or hearing stories of ABC. but i find knowing you Amanda and others with ABC very uplifting and I learn so much from you all. your spirit, the way you want to fight is just inspirational. I think they should do a story on you for the Beacon :-)
I'd be very interested to see what BCNA have to say regarding this. I never realised we had different issues.
BCNA is only quiet new and needs opinions like this and those replying to this to know what this community truely needs.
I feel if there was to be a story in the Beacon regarding ABC you could always put a kind of disclaimer on it saying this is a story regarding ABC please read at own risk or something like that. give the reader the choice.
some may benefit, some may not. but i know I would love to read stories no matter the diagnoses. you should not be excluded.
I think the fantastic thing about BCNA is that u learn u are not alone. I am so sad u feel that way right now... huge hugs amanda. keep warm and good on u for speaking up.
Merylee
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I would love to read more stories in my edition of the beacon around ABC.
I have EBC and I understand the fear hearing about ABC creates. but it is the reality of our lives i think. we have to deal with our pink sisters getting diagnosed with ABC or hearing stories of ABC. but i find knowing you Amanda and others with ABC very uplifting and I learn so much from you all. your spirit, the way you want to fight is just inspirational. I think they should do a story on you for the Beacon :-)
I'd be very interested to see what BCNA have to say regarding this. I never realised we had different issues.
BCNA is only quiet new and needs opinions like this and those replying to this to know what this community truely needs.
I feel if there was to be a story in the Beacon regarding ABC you could always put a kind of disclaimer on it saying this is a story regarding ABC please read at own risk or something like that. give the reader the choice.
some may benefit, some may not. but i know I would love to read stories no matter the diagnoses. you should not be excluded.
I think the fantastic thing about BCNA is that u learn u are not alone. I am so sad u feel that way right now... huge hugs amanda. keep warm and good on u for speaking up.
Merylee
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I would love to read more stories in my edition of the beacon around ABC.
I have EBC and I understand the fear hearing about ABC creates. but it is the reality of our lives i think. we have to deal with our pink sisters getting diagnosed with ABC or hearing stories of ABC. but i find knowing you Amanda and others with ABC very uplifting and I learn so much from you all. your spirit, the way you want to fight is just inspirational. I think they should do a story on you for the Beacon :-)
I'd be very interested to see what BCNA have to say regarding this. I never realised we had different issues.
BCNA is only quiet new and needs opinions like this and those replying to this to know what this community truely needs.
I feel if there was to be a story in the Beacon regarding ABC you could always put a kind of disclaimer on it saying this is a story regarding ABC please read at own risk or something like that. give the reader the choice.
some may benefit, some may not. but i know I would love to read stories no matter the diagnoses. you should not be excluded.
I think the fantastic thing about BCNA is that u learn u are not alone. I am so sad u feel that way right now... huge hugs amanda. keep warm and good on u for speaking up.
Merylee
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Perhaps the very name tells all - we are the nasty little secret inside the wave of pink positivism. I have found that many of my former associates, working with women with breast cancer, have been very slow to renew contact. It's just too confronting for them.
We badly need the kind of openness found on some of the US websites; it's a continuum after all and we should all be in it together. Can't sweep ABC under the carpet.
Great to see this discussion..... Pam
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Perhaps the very name tells all - we are the nasty little secret inside the wave of pink positivism. I have found that many of my former associates, working with women with breast cancer, have been very slow to renew contact. It's just too confronting for them.
We badly need the kind of openness found on some of the US websites; it's a continuum after all and we should all be in it together. Can't sweep ABC under the carpet.
Great to see this discussion..... Pam
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I am pleased to see people responding with their opinions. All opinions are valid and it is an interesting discussion.
I'd ike to see more comments as this is something I feel dearly about. I understand the fear and that is valid also but I do wonder at what cost.
Please those of you reading - I'd love to know what you think.
Amanda
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I would like to see them merge the 2. It is true that EBC and ABC are separated and EBC gets more focus. I never see people with ABC invited to speak at talks/forums. When I was 1st diagnosed I wanted so many questions answered that only come from people living with the disease. I searched for support groups but there wasnt any. Now slowly I am getting group of Advanced cancer friends who are focusing on wellness.
What about some focus on the people who are experiencing remission and what are their stories in the magazines?
It would be good to see some of the fear the community feels with Advanced cancers.. addressed. There is so much we can do to help others and ourselves with cancer. Wellness focus needs to increase to encourage people to take steps to do what they can for each other and ourselves. Even if this means experiencing a better quality of life in how they take care of themselves.
I would like to see Pink October to have at least 50 percent of money injected into projects for the local community needs. I want more acknowledgement of alternate treatment and the use of both in tandem for the best outcome.
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I would like to see them merge the 2. It is true that EBC and ABC are separated and EBC gets more focus. I never see people with ABC invited to speak at talks/forums. When I was 1st diagnosed I wanted so many questions answered that only come from people living with the disease. I searched for support groups but there wasnt any. Now slowly I am getting group of Advanced cancer friends who are focusing on wellness.
What about some focus on the people who are experiencing remission and what are their stories in the magazines?
It would be good to see some of the fear the community feels with Advanced cancers.. addressed. There is so much we can do to help others and ourselves with cancer. Wellness focus needs to increase to encourage people to take steps to do what they can for each other and ourselves. Even if this means experiencing a better quality of life in how they take care of themselves.
I would like to see Pink October to have at least 50 percent of money injected into projects for the local community needs. I want more acknowledgement of alternate treatment and the use of both in tandem for the best outcome.
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Hi Amanda,
I totally agree with you, I was diagnosed with ABC in March this year, my first diagnosis. Prior to that all I knew about BC was that it was curable, a girl friend of mine even said to me when I was going through all the tests that if I was to get cancer breast cancer was the one to get as it is cureable........... Now of course we all know different as my friends are all very supportive of me through my journey and they all know it's ABC and that I will most likely never be cured but will hopefully be under control. After 8 cycles of chemo (Abraxaine) and also being on Herceptin my blood test are showing that my tumor markers are low and I can come off the chemo for a while to give my body a break, but I will stay on the Hetceptin for maintenence.
I too find it upsetting that pretty much all of the media focus is on the "good news story" of EBC because everyone wants to hear about cures not about the fact that some of us will not be cured and that this terrible diease will take our lives one day.
I realise it's been a few months since your original post but having just been through my first October and seen all the ads on TV it has made me feel even more isolated with the focus on EBC and early detection and mamograms for the over 50's, I am only 42 and if you were to believe the ads I shouldn't have Advanced Breast Cancer as it's an older womans disease, more focus needs to be on all ages and regular checks and cheaper/free mamograms for women from aged 40, or even 35, more money and focus needs to be on research into ABC and finding ways to get the cancer under control and extend our lives to as long as possible. I too have young children, 16, 14 & 7, and want to see them grow up and achieve what they want to achieve and be there for them on their journeys.
I agree that The Beacon and Inside Story shouldn't be two seperate issues it should be one and give everyone the full story on both types of Breast Cancer, maybe then we wouldn't feel so isolated if those with EBC understood what ABC is and that we fight just as hard if not harder against this disease as they do.
Hope your all doing well and thats my rant for the day
Tracey :-)
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