Bernie Nolan diagnosed with secondary cancer

[Angelfalls]

Lemongrove and Lucinda, your posts say it all.

[broomsticklady]

I'm a secondary lady, who knew from early after my primary diagnosis that I had a poor prognosis - 15/25 nodes even if only stage 2 gave me that, as an uncaring oncology psychologist told me - but enough of her ... All I can say to the primary ladies on this thread is it is a very different world out there when you're secondary. Before this, I thought I had slight hope it wouldn't actually come back. When it did I was devastated. to be told you're treatable - for now - but we can't cure you puts you in a different world. I didn't really realise this til I went to a lunch with 7 others ladies, 6 of whom were primary and in various stages of treatment. Lovely ladies, and I wish them all well, but listening to them talking about treatment and how many days weeks til it was over and they could start living again - I've been there but things are different now - my thoughts and outlook are less rosey now, even tho I do try to enjoy each and every one of my days.
Like Lizcat early in the thread, I selfishly hope Bernie can use her status to publicise more the fact secondary cancner is alive and kicking out there, and get it in the public domain that while treatments have improved and most primary ladies will live long and happy lives, a few of them won't, and will sucumb to secondaries and all that entails.
Nina

[saffronseed]

i agree I am sure no one wants to 'offend' anyone thats not the purpose of these boards - we all have our views and these forums allow us to say what we feel. We should be allowed to agree or disagree with others as long as long as its not personal and disrespectful i see no problem

[cornishgirl]

Carrie everyone is entiltled to their own opinion, and the same applies here if you dont like it or find it offensive then stop reading it and moive on! I think it is extreamly offensive and insensitive what you have just written regarding the feelings of the secondry ladies on this forum , you and i are lucky enough not to be living their life (yet) ,so if you or anyone else on this forum wants inspiration then you need to look no further than them! Sugar coating breast cancer nomatter how unpalatable is wrong ,it makes light of this god damn awfull desease which kills 1 person every 15 mins in the US and 1 person in 30 mins in the UK.
Am appalled at your insensitive comments!

[keyfeatures]

(((((((((())))))))))

[Kittyqueen]

I'm not offended by anything anyone has said on this thread and I totally take responsibility for what I choose to read on these boards. But to be honest it has made me have a very rare weep as I don't like to think we're at odds with each other whether we have a primary or secondary diagnosis. At the end of the day we all have bc and we all need to work together and support each other and lobby for better treatments for all of us. So am joining with Revcat in a lovely virtual group hug xx

[carrie35]

I don't think Bernie every said she was cured, it was the media hype around her. Noone more than her knows the darkest times of BC as two of her sisters have all been and got the t shirt. I can remember seeing her on GMTV looking great and she gave me some inspiration and I wasn't offended by her saying it was just a year in her life, in fact if anything I found it encouraging that she had come through this as I was at the start of my journey. Reading these comment above make me think some of you are way too sensitive, everyone is entitled to their opinion and if you don't like it or find it offensive then stop reading it and move on! Life is for living and for every problem you have you can find someone else in this world who has a bigger one. I suggest you all go and watch Pride of Britain tonight and stop to look at some of these amazing people for inspiration.

[carrie35]

I don't think Bernie every said she was cured, it was the media hype around her. Noone more than her knows the darkest times of BC as two of her sisters have all been and got the t shirt. I can remember seeing her on GMTV looking great and she gave me some inspiration and I wasn't offended by her saying it was just a year in her life, in fact if anything I found it encouraging that she had come through this as I was at the start of my journey. Reading these comment above make me think some of you are way too sensitive, everyone is entitled to their opinion and if you don't like it or find it offensive then stop reading it and move on! Life is for living and for every problem you have you can find someone else in this world who has a bigger one. I suggest you all go and watch Pride of Britain tonight and stop to look at some of these amazing people for inspiration.

[lucinda]

I was dx with secondary cancer from day one (no sign of a primary) so never had the luxury of not wanting to find out facts.I have always been told it is incurable but treatable and my onc team have always said the hope is I will die of something other than bc.I have always been upset by all the press coverage and flippant "it was only a year out of my life" comments.I am sorry if those of you with primaries are upset by the facts of bc but it makes no difference whether we are primary or secondary we all have the same aims,to live every day normally,to enjoy life and to hope nothing progresses any further.
I am sorry to say this,and I am sorry Bernie Nolan has been dx with secondaries and hope her treatment goes well,but my first reaction to the article was welcome to my world.Yes she was brave to come out and tell her story but this is what some of us face every day,have to avoid arckward questiions and decide if we want to share or keep it to ourselves,have to deal with the sympathy look and the fact that after telling someone they avoid us.I am pleased Bernie is getting on with her life,I am pleased her fans have given her support but please remember there are lots of ladies out there just quietly getting on with their lives.We are not brave,we are not fighting bc,we are just getting on with what life has dealt us because we have no choice.We are all hanging in there waiting for someone to tell "there is a cure".I can only hope it happens in my lifetime.
I am sorry if my view upsets anyone.

L xx

[lizcat]

Angelfalls - well written.

I was secondary from the start in July 07 and didn't even visit this site until after chemo. Even then I only looked at primary threads to start with. Think it was probably to do with the fact I was still having treatment and had a load of other things to deal with at the time.

Everyone has their own way of dealing with things and how much they want to know - now I want to know everything and get copies of reports, docs letters etc - but we have to accept when we click to read a thread that we may not like what we read but that doesn't mean we should criticise the writer. This disease is evil by nature and discussions about any aspect of it can turn into an experience where we encounter unpleasant facts. We should all be adult enough to recognise this. Does this make sense????!

Liz

[NannieSpiky]

How I agree with Angelfalls when she states that secondary ladies have little support as it is without feeling as though our secondary post is being hijacked by people not liking certain statistics. Surely,on this forum, we are all singing from the same hymn sheet or else why are we posting here? I AM one of the 40% living with secondaries and doing it as positively as I can and appreciating life so much more because maybe it is going to be shorter than I would want it to be but, hey who knows! What I do know is that without the secondary thread, which I only started reading when diagnosed with secondaries, I would have felt very alone, scared and indeed bitter about my diagnosis. The positivity amongst the secondary ladies here is heartening but maybe our feelings and thoughts can only really be understood by those of us in the same situation.
As Lucinda points out, I too will get on with my fight quietly and with dignity, not because I am brave, but because life is so precious and worth fighting for, just not amongst ourselves.So, yes please Revcat, a cyber group hug would be very much appreciated.

[Lemongrove]

If individuals want to regard themselves as cured, and it helps them to move forward without fear thats fine by me. But when the press and media use words like cured, beaten, overcome, I personally believe it is very damaging because this generates complacency, and reduces the reality of cancer. Yes, we all know that BC is not the only awful thing in this world, but it does kill 13,000 people per year in the UK alone, and cancer in general effects many people, so it should be further up the political agenda.
The reality of cancer is awful, and when I read about another life lost on here (particularly when it involves people I have met in person, or have been in contat with privately), it makes me desperately sad (and if I'm honest it also scares me ). But the horror of BC cannot and should not be airbrushed.
When I was first diagnosed with secondary BC (which I had from the off), the news was not delivered in the most sensitive way. In fact people who have been visiting this forum for a few years (like Dawn, Scottishlass, Belinda, and Mrs Blue), will know my consultation was more a baptism of fire, than diagnosis. But looking back on it now, my then Onc he did me a favour, because I now realise the main challenge of having BC is coming to terms with the facts and learning to live and enjoy a new life - and that is possible. I now meet with a group secondary ladies to have lunch, ad you wouldn't believe how much fun and laughter we have.

[applestreet]

Wise words as ever Revcat...I thought all us ladies on these forums..or is it threads..were all in this together as it were..Lemongrove gives us all good information and it is only realistic that we are all going to have a different point of view..what I can say for me personally..is..knowledge is power..if anyone knows what they are on about..it's ladies who have experience of whatever stage cancer they have..does that make sense..the one thing that my cancer experience has taught me is..life..however long or short it is going to be..is too short for bad feeling..arguing or falling out..we are not children in a playground...we are all grown ladies and are all going to have a different opinion..no one has to withdraw from the forums because of bad feeling..I do not consider myself a survivor..I haven't been to Afghnistan..I have been ill..an illness..that this time I am recovering from..and whilst I am aware it may return..I do not worry everyday..as ST says..and I know some ladies don't agree..I live in the present..tomorrow can..in the words of Bernie Nolan..get stuffed....Revcat..gather everyone together for the group hug..and the same for me as well..apologies in advance if I have offended anyone..

[RevCat]

Thank you Angelfalls, that's a really helpful post! Like Tors I am a little reluctant to join in a debate that seems to have become a little heated. The dangers of the written word!

I am lucky enough to be NED after a Stage 3a primary diagnosis two years ago. My team were honest from day one saying they were "treating with curative intent" but that "there are no guarantees" and I have known 'my' stats from the outset (not brilliant, but so far so good). Like pretty much everyone who has posted on this thread, I have lost friends to secondary breast cancer, AND I have found support and encouragement from those for whom it is daily life. I do feel we have to take responsibility for what we read (I would never have come near these threads in the early days) as well as what we write. Truth is, as I see it, breast cancer messes with our minds and we are all vulnerable. Because we are each unique, our coping methods reflect that, and what works for one won't suit another, and maybe that is why some of the 'heat' gets generated as these outlooks collide?

Perhaps when we browse the Latest Posts we need to do so aware that not everything we find is going to be easy to read.

I don't want to belittle people's views or make light of disagreement and emotions raised by this conversation, but maybe it's a time for a metaphorical group hug and move on? And genuine apologies to anyone that suggestion offends or annoys.

[Historygirl]

I've been trying, unsuccessfully, to compose a post for this thread. Thankfully Angelfalls' post describes exactly the way I feel.

[Angelfalls]

I find it quite difficult to read criticism of posters mentioning stats relating to secondaries when they are doing so on a thread which is clearly marked "secondary cancer", on a board which is clearly marked "secondary breast cancer". It's not as if this information has been posted on the "newly diagnosed" threads!

When I was first diagnosed with primary BC, nearly ten years ago, I stayed away from the secondary threads precisely because I knew I wasn't in a place where I could cope with them. I would certainly never have read those threads, then complained about the posters because I didn't like the facts!!! Those of us with secondaries have precious little support for our situation as it is and we have to be able to use this secondaries space for ourselves and our needs without having to worry about possibly offending those with primary BC who may not like what we have to say about our reality.

[mb333]

Well said Tors.
I do hate the aggression that surfaces here sometimes.
I too have found the strength to read the good and the bad and make my own mind up.

[tillybob]

I totally agree with Tors , her words are pretty much just how I feel, I am 22 months post Dx for stage 4 IBC with lung and bone mets, Treatment has given me an NED status but I know thats as good as it will get, I really hope Bernie nolan gets successful treatment to keep her at least stable and hopefully NED, If nothing else it raises the profile of SBC.

[keyfeatures]

I agree that some information shared here can help. For example, painting dark nail polish to protect nails during chemo, or what to eat when you have oral thrush. However, I fail to see how sharing survival statistics with people who don't necessarily want them, is information that helps. For someone with a recently diagnosed primary, that is akin to tell someone with recently diagnosed secondaries their average remaining life expectancy. For me, it's information that should only be given by a trained medical professional, and at the request of (and with the consent from) the patient.

[mb333]

My daughter told me to look at this site because of all the very useful information when I was diagnosed with secondaries 18 months ago. My initial reaction was to say, ok and the information proved that I was very ignorant about this awful disease but..........
I began to read stories about people in much worse cicumstances than me who were suffering bad side effects from their medication and it made me very worried and sad.
Now, I agree with Lemongrove, I may not like the truth, but it is out there. It is much better for me to be informed than miss a vital piece of information that may help me in my fight against cancer.
My heart goes out to Bernie Nolan, but somehow I hope she manages to raise awareness of this disease for all of us.
Please let all of us who post be kind to each other.
Margaret

[Chatty_Katty]

Hi I am sorry but I am with super trooper on this. I am triple negative and just about to have radiotherapy. After I have finished my treatment that's it for me, no herception etc so my wa of coping with this is to believe myself 'cured' as if I spend that time reading about, listending about secondary bc I am probably going to worry myself to death. I want to live my life to the full believing I've beaten bc. If it ever comes back then I will deal with it then. This does not mean I am ignorant regarding secondary bc, I am fully aware of secondary bc, but rather selfishly (possibly) Ian not going to worry about it unless I find myself in that position. I believe stress can also trigger cancer so I am not going to stress myself out unless totally necessary. Just because this is what I think does to mean I do not have the greatest respect for anyone living with secondary bc.
people deal with this bl**dy awful disease in many different ways, maybe bernie tries to make light of her situation, as its the only way she can cope.

[tors]

Hi everyone, it is with trepidation that I walk into this debate, having been burnt many times on this forum when healthy debates turned into nasty free for alls.......


I read the Sunday mirror article and it infuriated me. It's such a myopic view of primary and secondary cancer, and the way it is worded distorts the information as it comes across to the reader. Articles such as this one certainly formed my pre-diagnosis view of breast cancer. I remember being really knocked back when I realised there wasn't ever going to be an "all clear" for me , because so much from the media had previously seeped in to my subconscious, informing me that cancer was a fight, you could win, you could be told it was cured etc.

Bernie's cancer hasn't 'come back' , unfortunately it never went away. We all have treatment for primary cancer hoping that it will be cured. And primary breast cancer is curable, and many many ladies will be cured and have no recurrence. The problem is that the medical profession cannot, at present, tell which of us IS actually cured. They can tell you how likely you are to have been cured, based on statistics, but there is no individual test/certainty that you specifically are cured.

When I was first diagnosed and realising that this was the situation, the secondaries threads horrified me. I was in a terrible state of anxiety already and they just sent me into a spin. Seemingly 'safe' threads could suddenly morph into threads that made me want to vomit and pumped my anxiety up. I avoided them as much as I could. However, as time has passed and my mind has adjusted to the reality of the situation I found myself in, I have gradually been able to read those threads. The forums are as much of a support for those with mets as for those with a primary diagnosis, and it is a double edged sword to seek solace and support here when you are newly diagnosed as the hard hitting stories you can be exposed to are the payback you need to weigh up against the support of others in the same situation as yourself.

[saffronseed]

I am saddened to hear of Bernie's secondary diagnosis but pleased with her approach to it and she clearly wants to live a 'normal' life that she can which I know is what all of us do either secondary or primary. I do feel to see stark statstics about 40% of those of us who were stage 3 will see a return is not that helpful - It might be statistcally accurate but like another poster I was quite distressed to see it in black and white on a post about Bernie Nolan. Its not about burying my head in the sand or saying I have 'beaten' it - Its about trying to get on with my life the best way I can without constanly worrying about the shadow and once the 40% seed was planted I could not stop thinking about it. I have googled (yes I know I shoudln't) and it has been on my mind constantly - I had managed to put the worry at the back of my mind and think that yes it may come back but then it again it might not. I now have to start again and try and put it back into persepctive with my life. My heart goes out to all you secondary ladies and I am inspired with how you all deal with it and that you live your lives and put up with some horrible treatments and SE in a very positive and matter of fact way - (thats not meant to be patronising) but for us ladies who are 'awaiting' the news that it has spread/recoccurance are vunerable too but in a different way.

[keyfeatures]

Surely the best information comes from our oncologists and treatment team? I'm certainly not getting my information from an article on Kylie or Bernie - and I don't imagine NICE are either. Would people really think there was no risk of recurrence despite have to go for yearly mammograms for five years?! Why on earth would I be having chemo, radiotherapy and herceptin if there was no risk of recurrence? However, after a certain point the chance of getting a new primary / recurrence is the same as anyone else. If you can't use words like 'cured' then, well we might as well say everyone has cancer (because strictly speaking they do).

[gordok1]

Hi ladies,
When I was dx last year, I was told my prognosis was great, no nodes affected, 9mm and grade 2. If it wasn't for this forum and the ladies on it, I could have went away and thought I was cured!! However the real world isnt as clear cut. I know that it could come back, I am also aware that sometimes having no nodes affected goes for nothing. Regardless of what my path report said, I would never say I am cured. I appreciate my life so much more now. It annoys me when celebs come out and say they are cured, or its just a year out their life, I believe it gives out the wrong message. I remember six months ago feeling that I wanted to come off this forum because I was reading things that scared me but I quickly realised that for me knowledge is power, I am not being negative I am being real. I drive everyday and believe there is more risk there. I remember at my radiotherapy the nurse who was checking me gave me my full path report as I had never received it and she said a great prognosis the only thing going against me was my age, I am 41! I enjoy my life and will continue to do so but now I will have a fear that I didn't have before my diagnosis. I hope bernie Nolan and all the other ladies on this forum who have secondaries continue to have many happy years

[supertrouper]

My comments were never meant to be offensive. I too have lost friends to cancer. The last funeral was just last week, so that's four this year. My choice of words on my previous post were not the best and I had meant to say that "many" people with secondaries continue to live long and fulfilled lives. I am not that out of touch with reality to think that everyone will.

I am going to step back from this thread now. I apologize to any that I offended.

[gordok1]

Hi ladies,
When I was dx last year, I was told my prognosis was great, no nodes affected, 9mm and grade 2. If it wasn't for this forum and the ladies on it, I could have went away and thought I was cured!! However the real world isnt as clear cut. I know that it could come back, I am also aware that sometimes having no nodes affected goes for nothing. Regardless of what my path report said, I would never say I am cured. I appreciate my life so much more now. It annoys me when celebs come out and say they are cured, or its just a year out their life, I believe it gives out the wrong message. I remember six months ago feeling that I wanted to come off this forum because I was reading things that scared me but I quickly realised that for me knowledge is power, I am not being negative I am being real. I drive everyday and believe there is more risk there. I remember at my radiotherapy the nurse who was checking me gave me my full path report as I had never received it and she said a great prognosis the only thing going against me was my age, I am 41! I enjoy my life and will continue to do so but now I will have a fear that I didn't have before my diagnosis. I hope bernie Nolan and all the other ladies on this forum who have secondaries continue to have many haraisedraised

[keyfeatures]

I don't think there is complacency in society about cancer, or breast cancer. It's one disease that receives a massive amount of attention and funding - and breast cancer gets way more attention than any other type of cancer as far as I can tell. There are lots of other issues that need attention too.

I realise that breast cancer might feel like the most important thing in the world when we have it, but really it isn't. There are wars, environmental issues, road traffic accidents, viruses such as HIV and hepatitis etc etc etc. Personally, I don't want to think about breast cancer every moment of the day, or have it as the top political issue either. I also don't think it's necessary for everyone to know the ins and outs of the different types of breast cancer, the prognosis for each stage and the like. That's why we have medical specialists. They are also trained in how to give out information (such as survival statistics), and I think they are better placed to carry out this informative role than the media, or indeed, internet forums. It's not a case of ignorance is bliss, it's a case of balance. I have a friend in her 30s just diagnosed with rheumatoid arthritis. My mother also got this disease at 30. Another friend of mine was murdered by her father (who was suffering with mental illness) along with the rest of her family aged 12. Another was killed in the Lockerbie disaster aged 18. Then there is my friend who is debating whether to have gender re-assignment surgery. I also know a couple of people with multiple sclerosis. My husband was an asylum-seeker suffering PTSD, smuggled into the country under a lorry, fleeing a country where personal freedom is highly restricted and dissenters face torture and death. Malaria and starvation are also causing many deaths every day.


So for me breast cancer, including secondary breast cancer, is a horrible disease. But it's certainly not the only disease or issue that needs addressing.

[Tawny]

Soupertrouper, I find your viewpoint on secondaries highly offensive. If we are not allowed to be honest here, then where? Over the last two years I have lost 5 friends to this illness - wonderful, vibrant women who all campaigned vigorously for better treatment and support. We all, after the first period of shock and sorrow, try and find our own niche and live our lives to the best of our abilities. I agree with your sentiments about living in the moment, no one understands that more than a person whose life WILL be cut short by cancer. This notion of 'fighting against it' simply implies that those of us who have a spread, or other bad news, are 'failures'. That we haven't tried hard enough or perhaps we weren't being 'positive'. This is an example of how the language used around cancer can be viewed as offensive. I don't think I will be posting on theses forums anymore if this glib view of what it like to live with secondaries is representative of posters to this site.

[cornishgirl]

Have to say i agree with Lemongrove and the others on this in that nothing pees me off more than constantly reading the words Cured and All Clear banded about in the press, like another poster said above the only time we know for sure if we are cured is when we get to a ripe old age and die of something else.

My onc has never used the word cured ,and has always been honest with me from the start, im glad that he has been ,i would have been more angry when i was dx again if i had been lied too, i dont want false statements, i want to know the realities of this desease , i dont live with a cloud hanging over me , i live life to the full like most people on here with hope that the treatments will keep the bugger away and not come back, but im a realist too and if it does come back i will deal with it again.

Also dont like the word battle, or survivor , as they also imply to loose or win, and am sick to death of people telling me youve beat it once so you can beat it again, or that BC is the best sort of cancer to have because they can just whip off your boobs and your cured!!!! Or the other popular saying " they can cure that" nowadays", NO they cant, and i think it does a huge injustice to those liveing with secondries or reocurrences to make light of this desease as it does cause complacency.

It is a difficult balance on a cancer forum as we all read and see a lot of the realities of this damned desease, it cant be avioded but nor should it be , ignorence is definatly bliss sometimes. but not at the expense of others who know personaly that they wont be cured.

So the bottom line for me is, im living with BC , i may be one of the lucky ones and be cured ,i may not, it may come back to bite me a 3rd time, or i may just get hit by that bus , who knows, but one things for sure, i may have cancer but it certainly doesnt have me, and whatever happens or doesnt happen in the future, i intend to have a blast along the way!!

Linda x

[Lemongrove]

Supertrouper, if regarding your cancer as cured is a comfort to you, and helps you to face the future there is nothing wrong in that ( I sincerely hope your cancer is cured). My concern is with the use of words such as cured and beaten by the press etc, because in my view it encourages complacency when what we require is action.
Sometimes facts are scary, but I don't think ignoring them, less they terrify us or blight our lives is the answer, I have secondary cancer, and understand the facts of that all too well - but I still have sunshine in my life (as do many of the other secondary ladies on this forum). When a secondary diagnosis happens, yes it is terrifying at first, but I think most of the secondary peeps I know manage to accept the reality and still enjoy life. Ignorance is bliss, when tis folly to be wise - but in the case of BC it is not folly to be wise.

[supertrouper]

I am with Keyfeatures with this debate. And I don't think that it is a case of ignorance is bliss (and all that). In my case it is living in the NOW and right NOW I am okay. If cancer comes back, then I will deal with it then. What I don't want to do is live today with the shadow of tomorrow blocking out the sunshine of my life now.
This thread has already scared the bejezzus out of someone just starting out on her treatment after being diagnosed. All she could see was the 40% chance of it coming back.
Bernie Nolan is determined to continue fighting against it. She has said that treatment so far has been sucessful and that there is no longer any sign of the cancer in her brain. Wonderful positive news!!
People with secondary cancer do live long and active lives. It's not a death sentence and I think we should be careful what we say in here. People are starting their journeys dealing with cancer every single day - don't let there first dip into this forum be one that scares them away.
And just for the record...I consider myself to be cured, all clear, better, whatever. Until proved otherwise. And if it comes back, I won't consider myself to be a loser.

[Lemongrove]

Keyfeatures, I respect your point of view (ignorance is bliss and all that), but I personally do have a problem with newspapers and the like using phrases such as all clear and cured, because I fear they foster complacency amongst society at large, when in fact they should be raising awareness. I believe that if we (the human race), are ever we are going to find a cure for cancer, then research funding has to be top of the political agenda.

[laura64]

Well done everyone bernie made light of her cancer she got a boob cos who she is unlike some of us unf not allowed one

[Angelfalls]

My feeling is that you can only really say you're a BC "survivor" or that you're "cured" or that you've "beaten" BC once you've died from something else... And the practicalities of that may be a little bit tricky!

That might sound harsh, but that is the sad reality of BC - it ain't pretty, pink or fluffy. And knowing the reality makes it much easier to face up to a recurrence or secondaries IF it happens; living in denial doesn't do anyone any favours.

[keyfeatures]

I personally don't have a problem with 'all-clear' and 'cured'. If it means living a few more NED years feeling more carefree then whatever it takes. There's no such thing as false hope as far as I'm concerned. Yes, you might get a recurrence further down the line, but the less you can worry about that in the meantime the better. You might also die from something else. If I am unfortunate enough to get secondaries I hope I find the strength to deal with that diagnosis. It's a club no one wants to join. In the meantime, I'll consider myself 'cured'. HOwever, whilst there is no way secondary breast cancer makes me think 'loser', I do feel every life shortened by cancer is a 'loss'. We need to be pushing for everyone to get every possible treatment to extend their life, and quality of life, so they can live longer and better with secondary cancer.

[lollypop59]

hi eveyone,
i totally aggree what hav ebeen said, i was dx with ibc grade three in sept 2010, i had chemo first then mx recon and then rads, and while i was having the treatment i was on this forum and the american forum armed myself with alot of knowledge about what can happen so when i was dx with lung mets i was quite calm about and i intend to fight all the way. my onc do not use the word cure and she is a lovely onc and very positive the way she talks to you and she have gave me alot of hope despite the secodries.

[Tawny]

Leah, I was referring to the actual day, when there was only one post - only two came up on my newsfeed for the whole of October. Also, re. press - it would be great to get a heads up when there is a confirmed interview/mention etc. I know you can't say anything until it has been confirmed, but you could do a "Look out for..." Last year I was interviewed via BCC for Radio 4, it wasn't even mentioned on the Facebook page and only eventually on the BCC site. I know you all work hard and it is a tough topic to 'sell' but I think we could feel more involved. I know I am always interested to read/hear what other people have to say.
I'm afraid I've gone a bit off topic, too.

[dib]

totally agree with applestreet,I remember seeing bernie nolan on this morning making light of having bc,i remember thinking how much easier it would be for the rest of us if we were financially secure and could afford to have help and not worry how we would pay the bills whilst we fight this hideous disease.I do wish her well and hope that people realise it is not so easily overcome as some of the celebrities affected make it out to be.
Di.x

[Leah_BCC]

mrsblue - Just to reassure you, Clare Kemsley is still involved with our secondary work (and posted recently on the forum about it) from her role in the services marketing team. People across the organisation work on secondary breast cancer - we have specialists within the nursing, marketing and policy & campaigning teams, to name just three. It's true there isn't a contact email on the secondary pages (as far as I can see) so thank you for bringing that to our attention.

Also, re Facebook, we posted 13 posts about secondary breast cancer during October (we usually post one or two a day, so that is a significant proportion of posts on our facebook page during October) - and another one today, relating to Bernie Nolan's diagnosis. Those posts were liked over 1100 times, shared by people over 216 times and people left 26 comments. And that isn't including the people who shared information about it via the Thunderclap.

A round-up of the press coverage of secondary breast cancer awareness day is here. Our press team work hard to get coverage, but we would of course like more.

Sorry, I know this has got a bit off-topic, so back to Bernie Nolan...

[NAZ]

Totally agree with you Applestreet!
One year out of my life and loving the new boob? I wish!
More like operation number 9 coming up tomorrow thanks to an incompetent useless 'breast surgeon' , massive scarring, a legal battle against the Hospital where i was treated, short curly hair for ages and the fear of a recurrance..
Saying that. life goes on and i hope this damm nipple is worth it! 🙂

[mrsblue]

Tawny, I'm not a Facebook user so I am shocked that there were only two responses.
I also notice that there is no email address, or indeed any named person, mentioned on BCC's website who could be contacted about secondary bc. (Clare Kemsley was formerly involved with this, maybe she has gone elsewhere?)
Sorry, I know this isn't about Bernie Nolan but it is about secondary breast cancer........ FOR LIFE.

[supertrouper]

Here Here to what Applestreet has just said. I read what some of the secondary ladies post up and it does give me hope and helps me to be less afraid of what the future may bring.
Bernie Nolan has said that there is now no sign of the cancer in her brain. Lets hope that she continues to get good results from here current treatments.

[applestreet]

and ...Lemongrove...you are certainly not a loser..you are one of the most informative ladies on here..and fiesty..long may you get on with what you do!!!...Secondary ladies on here make me less afraid of what one day may be my reality...thank you all..

[applestreet]

Hi
I too prefer to think that..as a stage 3 lady..I have 60% chance of non recurrence but I was watching tv a while ago when Bernie Nolan said"it's just a year out of my life and I love my new boob"..I thought she was treating it v lightly then..it's not "just a year out" of a BC lady's life..it's the rest of your life..we're never free of the threat of reoccurrence or a secondary dx...we never.."beat " BC..we just have to learn to live with the new reality that we've been given to cope with..when Bernie Nolan was dx..my aunt was fighting BC for the 2nd time..and I thought she could've been a bit more serious..it's all v well sitting on breakfast and morning TV with a bald head..it's the rest of the day and all the other days that count as well....I think the words "given the all clear" and "cured" should be banned as well..living with BC is what we all do in one way or another..both primary and especially secondary ladies...Lemongrove is right..the language used by the govt and the press should be examined and a message put across that once you are dx with BC you are only NED from one yearly appt to the next...celebs that go on the TV and talk about their BC should have a serious think about what they are going to say before they open their mouths..some celebs eg Jennifer Saunders didn't make a big public thing about their illness..the likes of Bernie Nolan used it for publicity..don't get me wrong..I have every sympathy for her..I just think she could've been a bit more serious..apologies in advance to anyone who may disagree

[Tawny]

Yes, I read about this yesterday. Although she is absolutely entitled to her privacy, I - perhaps selfishly - hope she uses her 'celebrity' status to raise media awareness with regard to secondary breast cancer.
I'm sure most people would prefer to read positive stories about breast cancer but, as someone with secondaries, I also want to hear real information.
Those of us with secondaries are most definitely marginalised. We are the story that no one wants to read. I feel that we were particularly absent during this Breast Cancer Awareness month. I thought that BCC's input to secondary awareness day was very weak...the past two years we have been to parliament, this year some of us shared our stories and there was a social media campaign but I didn't see any mainstream press and it felt a little like preaching to the converted and even their Facebook page had only two posts. Disappointing.
Wishing all the best to everyone living with secondaries.

[mangochutney]

Really upset to read about Bernie Nolan today. Both her and her sister Linda have been a real inspiration to me since my diagnosis in March 2011. Ive followed them both closely and really admire how both of them have conquered their disease and appeared to have got their lives back.
Im sending Bernie my very best wishes and lots of love.
Mandy x

[Quail]

This "primary" is actively living with those statistics, LizCat, which is why I have joined in the various things BCC are doing to raise awareness of secondary bc--including TRYING to educate our friends and family about the reality. I have finally got my family, at least, to recognise that I'm not cured. And more and more of us are aware that we are, as the BCC lingo has it, in the land of NED rather than "well". A good friend of mine died three years ago of BC mets, after living fifteen years with NED. It's hard to map out a path that refutes the black/white--bc/No bc dichotomy. Certainly living with the disconcerting and continuing SEs of primary bc, including lymphoedema, neuropathy and arthritis, gives me a whole new appreciation of the long arm of bc. I agree, that the best way forward is to show the many different ways that BC continues to change all of us. Lizcat, know that you are one of those here who provide hope and inspiration to me, at least. And all the best to Bernie Nolan, and to all of us here. It is hard to learn to live in the reality of the present, rather than in the fear of the future.

[chrisp1e]

I feel sorry for celebrities in some ways who have bc because they are always in the limelight and don't seem to get the privacy that all of us need while coming to terms with diagnosis, surgery, altered body image, chemo, etc. When I hear that Kylie and Martina Navratilova have beat it, I think to myself - for how long? I don't think there will ever be words which make it easier for us to accept but we do have to be aware of the truth.
I'm sad for Bernie to be diagnosed with such extensive mets but as others have said, it may raise awareness of the disease.

[scottishlass]

I think the words "given the all clear" and "cured" should be banned. It upsets me when I read this about anyone. As a long term survivir myself I theink it gives false hope to people. It must be awful to be given the "all clear" or whatever phrase they use and then to find that this is not the case. I am "living" with Breast Cancer but I am not and never was given the "all clear" BUT more than 12 years on with secondaries and I still have a good quality of life. I hope that this is a help to people who are worried about their future. But please no more "all clear" or "cured".