The Beacon and Inside Story - putting it out there.

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

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

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