Keyfeatures and Carrie45, you make two points (1) you think these forums should only contain positive information, less we frighten newcomers who wander into the wrong forum by mistake (2) you believe there is nothing wrong with the media using language such as cured, beaten, won the battle etc in relation to cancer, because it is comforting and gives hope to everyone.
With regard to point 1, the information discussed on these forums is already in the public domain (otherwise none of us would know about it). Also, anyone who is diagnosed with BC (be it primary or secondary), is forced to come to terms with the terrifying fact that they have a potentially fatal and very unpredictable disease, and that they have to live with it - what other choice do they have? I agree these sad facts are not reassuring, but they exist, and people need to be able to talk freely to each other about them. I don’t know how others feel, but for me personally, being able to talk about these things, is a comfort. For me, facing these demons head on makes me feel less fearful of them. In any case, how far would we go to airbrush bad information, less it upsets someone? Should we censor the deaths of people on this forum?
With regard to point 2, I would have thought the example of Bernie Nolan, is evidence in itself of how wrong it is for the media to use words like cured, beaten, won the battle etc. In my view, these terms reduce the seriousness of BC in the public consciousness, and foster complacency, at a time when BC should be pushed up the political agenda. not down. My heart goes out to Berie though, because she not only has this appalling disease to deal with, but because in allowing herself to be portrayed as someone who has won the battle, and made reductionist comments like " it was only a year out of my life", makes her appear as someone who has now lost the battle - a failure who battles on against the odds. This is so wrong, those of us with BC are not winners or losers, we are just humans dealing with the hand that fate has dealt us.
Spot on again, Lemongrove!
I agree with Nicky that those with primaries should feel welcome to contribute to secondary threads, but only if they do so with sensitivity and emotional intelligence, as the majority of those who’ve posted here have done. But I don’t think there is any place on these forums, whether for primary or secondary BC, for the kind of thoughtless comments and criticism which a small number of individuals have posted. Unfortunately, those same people just do not seem to understand what they have done or why their comments may cause offence. *sigh*
Yes Lemongrove let us all remind ourselves that Bernie is a human being with feelings and is probably very scared and even harder for her as she’s in the public eye and probably feels she has to put on a brave or happy face for want of better words. Quite frankly I hope she doesn’t look at this site and see she’s been a focus of a lot of comments (And heated exchanges of opinions) But maybe she does look and under a different name as perhaps she like the rest of us needs a little support at times through this nightmare regardless of primaries or secondaries or reoccurance or whatever it is a nightmare for each and every individual on their own journey. I don’t think any of the comments on here where meant to offend but like texts words written down sometimes get taken in the wrong context unlike a conversation.
Hi all…I am a primary lady but have just read what Lemongrove posted and agree with every word she says…sometimes you have to walk in someone’s shoes to understand their life…their problems and more importantly…see things from their point of view…I have had really bad times in my life…I have looked out of my front room window and seen the world still turning and thought…why me?..how is everyone still going about their business and this is happening to me?..Lemongrove is right…sometimes you just have to deal with whatever hand life throws you…and that’s what BC does to you…when I was first dx I didn’t even know BC could mets itself somewhere else…I had never heard of a lymph gland…I didn’t know what a recurrence was…but I do now and your secondary threads give me knowledge…better to be forewarned…well for me personally anyway…as ever apologies to anyone I may have offended …it’s unintentional…
Carrie35 - I know you’ve said words written down can be taken in the wrong context but I think the part you wrote on your earlier post about some people being way too sensitive and that they should move on from anything they don’t like reading was an insensitive remark to make in itself. Loads of us with secondaries get on with life and marvel at what others from all walks of life have to deal with. We just want to make the public aware that secondary bc is a major incurable illness and there isn’t an end to treatment for us. Often no-one would have any idea we are ill as we look ‘well’ (to coin a phrase!).
Sorry lizcat I thought this thread was all about Bernie not about individuals, my comment regarding people being way to sensitive was because there seemed to be some argument going on. So if you think I was in sensitive" then fair enough but ironically my comment was aimed at supporting what you had written about “sometimes not liking what you see but dealing with it!” Anyway there you go a typical example of how things can get mis construed. Similarly I was taken back by your first comment when you said that “in a selfish way you hoped Bernie diagnosis would help the cause”, I know you didn’t mean it to sound insensitive but on first reading that is how it came over to me. I originally thought we were all going to be routing for Bernie to come though this not get into an argument about primaries versus secondaries I am more about let’s share a virtual hug for all regardless. So if you or anyone else think I was being insensitive then I apologise!!
Carrie, Bernie won’t “come through this”. She has secondaries. That’s the point.
I did not think that this was all about Bernie Nolan, I thought it was all about ‘Living with Secondary Breast cancer’.
Over the years we have frequently mentioned lots of women who have had the misfortune to join this club.
If she wanted to be in la la land regarding her original diagnosis then that was her choice.
However there will have been thousands of ladies ( and men) with a secondary diagnosis, biting their tongues.
As has been stated, the ‘battled with’, or ‘beaten cancer’ metaphors wear a bit thin, in fact they become abhorrent when you are ‘losing the battle’.
I have been using this site almost as long as it has been here. This argument has continued relentlessly. Rather than having completely separate forums, BCC decided to include them together but clearly labelled. If you do not want to explore the reality of secondary breast cancer, just do not read it !!!If you want to stay in your bubble that is fine. Once again this thread is under a secondary section…
I do understand, in the early days I would avoid the secondary section at all costs. It was somewhere I did not want to read about. I did venture in at particularly dark times and it was good to know it was there.
On my secondary diagnosis, the site was ( and is) invaluable. As we are mainly sidelined by the media, Breast Care services and sometimes our Oncologists and Family; we need somewhere where we can find truth, honesty and real life experience.
Lizcat was not being insensitive to Bernie Nolan. Lizcat is one of the most sensitive and caring people I have had the pleasure to meet. She is hoping, as am I that such a well known and popular celebrity having a secondary diagnosis, may actually highlight the forgotten bunch that we are, the dark side of pink and fluffy. Maybe some recognition will be given to our diagnosis.
We all try to lead full lives and we are aware that cancer isnt everything…Just sometimes, when we feel that it is, it is good to be able to go somewhere where people understand.
julie
This was in today’s Independent, written by someone who’s living with secondaries:
Ive already said what i feel about the whole cured /all clear nonsense, and must admit even as a 2 time primary i certainly do not feel i am cured and safe, ive been on these forums long enough to see some primary ladies even those with exelent prognosises get secondrys quite quickly and die and likewise i have seen a few secondry ladies respond well to treatments and outlive their prognosis for many many yrs, Val, Belinda to name a few who give all of us primary ladies the hope and inspiration that if one day we are walking in their shoes that there is a shread of hope that it is not always an immeadiate death sentence. This desease is cruel and unpredictable for everyone, i often wonder if anyone is cured or if its just that the treatments if work well that keep the cancer at bay for a while ,sometimes if we are lucky many many yrs, my oncologist once told me that breast cancer always comes back but it is their job to get me to a ripe old age before it does, i got jumped on the last time i said that on the forum and i realy dont mean to frighten anyone as i dont even know if he is right or wrong but that was his view.
It all boils down to how well each of us responds to reatments in the end i guess, but cured? i dont think i will ever feel cured ,and primary people like me will only know that for sure when i grow old and die of something else.
My heart gos out to everyone.
x
Breast cancer always comes back? Where is the scientific evidence for this? That is the most ridiculous and scaremongering comment I have read on here to date.
Also, Bernie Nolan was not in la la land over her diagnosis. She was trying to keep herself as happy and optimitistic as possible through it. The fact her cancer was not clear and will now never be cleared was just bad luck, or rather due to the inability of her medical team to spot micromets etc at the time. There are many women (the majority) who never get a recurrence or spread and die at a ripe old age.
I am truly sorry that this is not the case for everyone. However, to say that people who do not have a secondaries diagnosis are living in la la land by hoping they will never receive one or considering themselves cured unless told otherwise seems rather harsh.
Juliet66 - thank you so much for being too complimentary! Not to mention how well your post is worded xx
I notice that the blog in The Independent uses the phrase “primary ‘curable, survivor and all clear’”.
Everyone knows that people die from cancer. They also know that some people don’t. In fact, one of the stupid questions (or maybe not so stupid) asked of me soon after diagnosis was by one of my husband’s Iranian friends in his broken English; “In my country we say there are two types of cancer, optimistic and pessimistic. You can be cured with the first but not with the second. Which one have you got?”
My answer would be pessimistic as I was secondary from the start 
. guess that’s not what people would want to hear though… Having said that I am an optimistic person and whilst treatment is always there, I try to make the most of everything and really appreciate life
Good morning all, and welcome to November. Pink October is behind us, Halloween is yesterday, and it’s a day in YOUR life, whether you have primary, secondary or no breast cancer.
If I could have a wish for today, it is that everyone who reads this thread could click on the link below
breastcancercare.org.uk/day-your-life-landing
It could be a day in Bernie Nolan’s life - or in my life - or in the past life of my e-friend V. who died in a hospice this week.
Hi I personally found bernie nolans comments inspiring. Again everyone is entitled to their own opinion. i am triple negative and have found that nearly all media reports on this type of cancer are very negative. Usually always referred to as “very agressive” “often fatal” “deadly” and recently this comment:
Patients do not respond to drugs used to target other types of the disease. As a result of this and triple-negative’s aggressive nature they often die sooner. Some are in their 30s.
So I am we’ll aware of the seriousness of the disease and also the fact that if I every got it back there really is only chemo to keep me stable no herceptin etc for me. So for me hearing someone trying to be positive and upbeat is encouraging, it shows people that yes it is incurable bc but that bernie is trying to make the most of her life and live it to the full itit in no says to me that she is ignoring the facts.
Keyfeatures, I think it is quite rude to refer to Cornishgirls comments as ridiculous, ad unscientific. Everyone is entiltled to their opinion, and Linda was merely positing an idea (she didn’t claim that it was scientific) . I think the point Cornishgirl was making is that whether we have primary or secondary cancer, we are all in the same boat really, because we all have to confront the fact that we have a potentially fatal disease (and have to learn how to live with this knowledge). Of course people survive BC, but none of us know what the future holds, and even those who survive have to live each day with the knowledge that it may return. So please, the discussion so far has been respectful and civil, so lets keep it that way.
With regard to your point that Bernie Nolan was just trying to keep herself happy when she described her primary cancer as cured, beaten, and just a year out of my life. That would be fine if she kept those views to herself, but when she allowed this to be reported in the press/ TV/radio it was very damaging (in my view). Angelfalls posted a link to an excellent blog in the Independent, written by a woman with secondary BC, in which she describes how she constantly has to explain that her disease is not curable. I believe the main reason for this is that the media constantly publish stories about Celebrity survivors (if that’s what they can be called), but seldom mention the facts = because that is what they think the public are interested in.
Finally, I think it is quite offensive of you to divide those suffering with BC into those with optimistic or pessimistic disease. People who are able to confront their demons head on, and overcome their fear to carry on living regardless are the strongest of all, and should not be described as pessimistic.
It’s my opinion that saying all breast cancers come back is ridiculous and unscientific.
If you read my post carefully you will see I did not divide people into those with optimistic and pessimistic cancers.
Keyfeatures, you said the following: " Everyone knows that people die from cancer. They also know that some people don’t. In fact, one of the stupid questions (or maybe not so stupid) asked of me soon after diagnosis was by one of my husband’s Iranian friends in his broken English; “In my country we say there are two types of cancer, optimistic and pessimistic. You can be cured with the first but not with the second. Which one have you got?” Why ask the question if you believe otherwise?
Also, you may hold the opinion that Cornishgirls comments were ridiculous and unscientific, but I think you should just say you disagree. Some may think that many of your ideas are ridiculous and unscientific, but it would be rude to say so.
I didn’t ask the question. I was quoting a question. Which I referred to as stupid.
Words are buckets in which various meanings can be found. Personally, I think despite the report of Bernie having '“won her battle”, I don’t think anyone would now see her as a loser. People use metaphors all the time. Sometimes you have to ignore the literal language and look for the emotional content. The emotional content of the reports into Bernie are all wishing her well and hoping she doesn’t suffer. People want to do the right thing.