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Bernie Nolan diagnosed with secondary cancer

southernlucy
Member

Re: Bernie Nolan diagnosed with secondary cancer

I was writing my last post as keyfeatures posted so it all looks a bit redundant now - sorry. Flori I loved your comment, I can join you in the pessimistic group and it sort of works for me although I don't voice it to friends as it obviously makes them uncomfortable, they prefer cured - so I am colluding in many ways. I think that is the biggest value of these forums that we can talk about how we really feel. Reading the secondary threads in the very beginning were scary, to be honest everything was scary but you wonderful feisty women make me feel if I have to join you at any point you will be there to help and I will cope. xxx

southernlucy
Member

Re: Bernie Nolan diagnosed with secondary cancer

Hope you don't mind me sticking my late oar in - I think as Lemongrove said it is up to all of us as individuals how we present our own future to others. As a primary, but not with a brilliant prognosis, when people ask if it is cured or gone I say "I hope so". BUT the media from the BBC and broadsheets to the Sun and Daily Mail should be responsible enough to get the terminology and information right and that should include celebrities who are interviewed. I think we all play down how awful treatment is, I was in the middle of Tax when Jennifer Saunders was reported as saying that "it was not so bad" (wanted to shout at her) and there is some bravado about "putting it behind us and getting on with life" when I can't imagine ever putting it behind or not worrying.
Not sure about how to get the media to report accurately. Papers like the Daily Mail will use "journalists" who will whip up reaction eg Samantha Brick or the girl who had her life "ruined" by a mastectomy for DCIS (step in our shoes) as they want readership numbers (I have to confess here to being addicted to The Daily Mail online). Perhaps the only way to get it across is to encourage celebrities to go on tv/radio and talk about it as it really is rather that try to live up to the being brave/plucky/fighter label the media has already given them. There are journalists such as Deborah Orr and Christina Patterson who have done some good pieces on their own (OMG I nearly put battle) experiences with treatment for breast cancer. Writing to the Health correspondents at the BBC and newspapers may help.
I know this has got a bit heated so hope I haven't said anything that upsets. Julia x

keyfeatures
Member

Re: Bernie Nolan diagnosed with secondary cancer

I may not agree with the problem but I can offer some advice for a solution. As a media person (TV producer) who has had to respond to complaints and comments about programmes I've been editorially responsible for then I recommend the following;
Don't waste time writing on the comments section of the online papers (e.g. Daily Mail). These don't get the attention of the journalists or get taken seriously. There is no promise of a response to these sections and often your comment will just be lost in the swarm of trolls.
Do write to, or directly email, editors responsible for that section of a paper. Or contact the broadcaster showing the programme - all have departments to respond to complaints. It's quiet easy to find the numbers or addresses with a quick internet search.
Complain about specific articles, not about general portrayal. Do it on a case by case basis. Once a complaint is upheld that editorial judgement will filter through to the rest of the papers' or broadcasters' programming.
Be concise, factual and specific. If possible, cite authoritative sources / organisations. A good thing to question is 'accuracy'. Editors don't like to hear something is factually inaccurate.
If possible have a small group of people all complain about the same article or programme at the same time. Numbers get noticed.
Remember that journalists / programme-makers deal with all sorts of complaints. Some of them, frankly, are rather nutty or trivial. Try not to come across in a way that will allow your complaint to come across as such. We tend to call these the green biro brigade.
Try to avoid referring to 'the media' when complaining. There are many sources, they are not all the same, don't tar with the same brush. For example, the Daily Mail is well known for lack of factual accuracy, bad science and health scaremongering. The BBC is a completely different case - although can still make mistakes.
Make sure you know what you want to achieve before you start, and why.
Remember, a difference of opinion is not a basis for a complaint. You need something concrete / evidence.
mrsblue
Member

Re: Bernie Nolan diagnosed with secondary cancer

How will a balanced awareness be achieved, indeed?! I live in hope that BCC, and - or with - other bc charities, will do all they can to help towards this. Or maybe it will be done through social networking. Or via GPs (though I think this is unlikely).
Let's keep the pressure up, building for October 2013.
Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

Linda, I don't have the answers - but my instinct is that it's a matter of informing the opinion makers. Beyond that I think (as this thread has shown) there is a difficulty of how to present fact, while keeping hope, and optimism alive.
Would be interested to discover how others think this balance could be achieved?

cornishgirl
Member

Re: Bernie Nolan diagnosed with secondary cancer

I agree Lemongrove, the problem is HOW do you change the way the media reports, journalists either want a headline grabbing sensationlist story (like the breast screening over Dx fiasco) or they sqew the facts, the general public (not their fault) are ignorant to the realities of breast cancer and only know what they read in the press, and sadly even some breast cancer patients believe all the hype too.
An example of this today for me was with another lady i met with breast cancer, in the buildng where my mother lives (she is a carer) she was telling me that when she was DX 3 yrs ago she refused point blankly to have chemotherpy or radiotherapy or Tamoxifen, not saying that wasnt her right and choice to do so ,but she said her reason was because she would rather she just had a mastectomy and got rid of the problem, she then said if it comes back in the otherside she will do the same.
I dont know what the answer is to be honest, all any of us can keep doing is shout from the rooftops, pressure cancer charitys to inform the media correctly and keep pushing them for factual reporting , jump up and down and try to make our voices heard ,but while people are apathetic ( and you cant blame them many people think they dont have any clout to make a difference) and dont create any noise i doubt very much if it will change.
People shy away from reality, perhaps they dont want to read the truth, perhaps it doesnt sell papers, they only want to read the good news stories with the happy endings ,maybe its too much for them to handle. All i know is i seem to spend half my time correcting information in comment boxes in the press online these days , and then some idiot usealy pops up telling me i obviously know nothing about cancer, How do you change attitudes?
Linda
peacock
Member

Re: Bernie Nolan diagnosed with secondary cancer

I'm sorry to hear of Bernie's secondary dx and wish her the very best to get through it, as we know that many of our ladies are troupers and manage to fight secondary bc for many years.

It is a scary thought for me, as a primary BC lady times 2 (each breast at different time) so I do my best to push dark thoughts to the back of my mind and hope that I will never have to face a secondary dx.

I never consider myself cured of either primary, just that I am doing ok for now and hope it will remain that way. My Oncologists and surgeon have never told me I am cured.

I do think it is wrong of the press to use the words cured, beaten - and wish they would research their stories before announcing.

applestreet
Member

Re: Bernie Nolan diagnosed with secondary cancer

Well said Flori..

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

I think we are drifting off the point slightly. The point is that while there is nothing wrong with individuals such as Bernie Nolan thinking a cure is possible, or that they have beaten BC or been cured (we all have our own coping strategies), but it is wrong when the media use the same language - because it fosters complacency, and ignorance, when we need more awareness.

dib
Member

Re: Bernie Nolan diagnosed with secondary cancer

I dont understand why everyone is differentiating between secondary and primary posters.We are all fighting bc and should be supportive of each and everyone of us.Newly diagnosed ladies arent stupid,some will be in the same position as me having lost loved ones and will gain comfort from hearing from secondary ladies whp are doing well and those who dont want to read the secondary threads dont have to.I for one am inspired by most of the secondary ladies.Love and best wishes to all,united we stand.xxx
Di.x

keyfeatures
Member

Re: Bernie Nolan diagnosed with secondary cancer

Have to say I don't deliberately seek out the secondaries threads. I find it particularly difficult forum to navigate, and find it tricky to keep track of which posts I've been on once they fall off the latest posts. So if something is in the latest posts, I'm likely to see it. Yes, it may well be better not to look - but then comes the accusation of ignoring people, and precisely the issue that people with secondaries are sidelined because they are the story no one wants to hear about. And that feels horrible. With the forum, I particularly dislike the way the side menu is ordered and the way it seems to tell a 'story' from "worried" through to "in memory" - and even looking at it makes me feel mildly concerned. Hopefully the new forum will be more user friendly, with some sort of "my posts" facility.
cornishgirl
Member

Re: Bernie Nolan diagnosed with secondary cancer

Have only just caught up with this thread today its been a rads day followed by retail thearpy (always works for me when im feeling low lol) ,Lemongrove and the other secendary ladies, i want to thank you all for the honesty in this thread , even on a cancer forum it is rare to be able to realy express your fears and views on the issues that need to be talked about ,something that is understandably more difficult to be able to do on a primary thread , so thank you for letting those of us with primarys butt in when we realy shouldnt ,and for alowing us also to share our own views and thoughts and fears with this awfull vile desease.
Keyfeatures, just wanted to say i apoligise if you thought my post was scaremongering ,it realy wasnt meant to be, i just wanted to share something on this thread that my onc had said to me in a conversation about breast cancer reocurrences. i dont know if his view is right or wrong and i think i said that in my earlier post.
You also asked for scientific evidence , I think it would be very difficult to get any scientific evidence to support his view because many people will outlive their cancer dx and go on to die of something else, but that doesnt nessesasarily mean that at some point in the future their cancer wouldnt have come back eventualy does it? , we already know and it is acknowledged for instance that the same origional tumour can sometimes present itself again even many years later ,sometimes even as long as 20 or more years later , this suggest to me that a cancer that was thought of as cured can infact lie dormant for many years and then for whatever reason become active again, couple this with the fact that we are only able at this present time to treat the "symptoms" of a cancer and not the underlying cause , it doesnt seem too outlandish to me that my oncologists view could be right.
I was wondering after reading all the posts just now whether i am an optimist or a pessimist , i think the honest answer is im neither, i certainly dont let cancer invade my every wakeing though ,i live life like everyone else and enjoy it as much as i possibily can ,and when the what ifs and damn right scarey thoughts get to me i usealy (not always) manage to put back them back in the box till the next time, what i do have i quess is a healthy respect for the thing that has invaded my life , i would be silly not to its an unpredictable desease , i acknowledge that ,but at the same time i also try to carry on sticking 2 fingers up to it ,thats how i deal with it all ,and all the uncertainites that having cancer brings , like most people i was forced to look cancer in the eye ,i didnt like it ,but i have learnt over time to accept it for the beast it is and in being a part of my life .
Linda
foxyferret
Member

Re: Bernie Nolan diagnosed with secondary cancer

Well said.
Kittyqueen
Member

Re: Bernie Nolan diagnosed with secondary cancer

Lovely post Flori xxx

Quail
Member

Re: Bernie Nolan diagnosed with secondary cancer

Flori, please don't have regrets. I agree with so much of what you've said--thank you for putting my thoughts into words. Particularly regarding how I feel about all of you women with secondaries, both the help and the inspiration. And the group hug, for that matter. All of you make my life better! Thank you.

Angelfalls
Member

Re: Bernie Nolan diagnosed with secondary cancer

(((Ali))), you're welcome. I really hope you have better days soon.

BrainyBlonde
Member

Re: Bernie Nolan diagnosed with secondary cancer

Di and Sukiem have expressed my feelings perfectly. Everyone deals with things differently and you have to respect that their way may not be your way. Life is a 'vale of tears' and most get through it by trying to ignore most of the suffering in the world, not because they are denying that it exists, but that by acknowledging it and focusing on it, the pain would be too great and would make day to day life unbearable.
My whole family has been affected by breast cancer and I am currently the only 'survivor'. They and I know, however, that my sister (45 years old when she died) and all the other members of the family who have died from this particular disease were, at some stage, at the point I am now. I do understand their need though to tell themselves and me that I am now fine, cured or whatever. It is their way of coping with the fear. I can't blame them. I do know though that I know and they know that this may not be the case but that we must take each day as it comes and try to make it as good as it can be. No-one knows what awaits them around the corner.
Warm feelings and hugs to everyone on these forums. They have helped me enormously to face up to things that, at first, I didn't think I could cope with.
Jan x

dib
Member

Re: Bernie Nolan diagnosed with secondary cancer

Hi all,Im a primary bc lady but often read the secondaries posts because they give me hope for a future,When I was diagnosed in 2010 the only other 2 people in my life who had been diagnosed with bc,my mum and aunt,had both died from secondaries(albeit quite a few years ago) so when I was diagnosed I immediately thought thats it then,a death sentence.However reading the posts from the secondaries ladies has made me realise that if I am unfortunate enough to join your club at some time in the future,there is a future for me,so I dont consider myself `cured or a survivor`but Im living my life as best I can not knowing if cancer will return,either this year,next or in 10 or 20 yrs.There are times when im positive about it and times when im sure it WILL come back and get me.But whatever happens,you ladies are an inspiration to all of us primaries and I wish you all the best as you continue your lives.
Di.x

suzan
Member

Re: Bernie Nolan diagnosed with secondary cancer

hi mrs blue lost all your details glad you are doing so well can you pm me contact details love suzan x

Ali_H
Member

Re: Bernie Nolan diagnosed with secondary cancer

Angelfalls thank you for your comments re reconciling reality with the portrayal in the press, this has helped me hugely today at a time when I needed it, so thank you.
keyfeatures
Member

Re: Bernie Nolan diagnosed with secondary cancer

That is very true jackster50. There are similar emotions behind the person with a secondary diagnosis seeking inspiration from those who survive 12 years or more with the disease and those of the person with a primary diagnosis finding solace in stories of those who have gone on to live and die without any evidence of the disease coming back. We may know that these more positive stories are not true for everyone, but if it's a help to make the day more enjoyable to focus on them I don't have a problem with that. Psychologists have shown that humans as a whole have optimistic bias, that is they tend to underestimate the risk of bad outcomes for themselves. Some individuals will be an exception of course. I'd say the media simply reflect average human nature.
jackster50
Member

Re: Bernie Nolan diagnosed with secondary cancer

I think the world we live in has ideals and standards which rightly or wrongly we as human beings strive to acheive. Whether it be beauty; the nice picket fence house; the latest car, etc. We spend our lives trying to be what society deems as good, perfect or even normal.
In this world, breast cancer is a disease and its victims are fighters: Mummies, sisters, daughters, all coureagously battling Cancer, while their familes and cancer survivors 'run marathons', 'bake cakes' to fund a cure. This is how our society copes with such a dreadful illness.
When someone first hears that they have breast cancer it soon becomes apparent and envitable due to the reactions and hope of family and friends that they will beat the disease. Chemo, surgery and other treatments bring pain and dissillusionment but these are endured in the hope that one will come out the other side as a survivor (or alive to live a new normality). The mantra - I want to survive cancer! I dont want to die!
The dark reality is for too many women cancer takes hold and becomes advanced and the ultimate goal is taken away. To make matters worse their voices are unheard, their plight minimised because they do not fit into society's view of the breast cancer survivor. This brings added pain and Im sure tremendous anger and feelings of betrayal.
Whatever name or label we give to ourselves - whatever opinion we hold due to what ever stage we are at. The truth is we all share the anger, and the fear caused by cancer.
keyfeatures
Member

Re: Bernie Nolan diagnosed with secondary cancer

Apologies if I uspset anyone. I stand by my views but perhaps could have put them forward in a more kindly way.
Best wishes to everyone
Nicola x
sukiem
Member

Re: Bernie Nolan diagnosed with secondary cancer

Thanks for the link too Mrs Blue-it encouraged me to throw off my duvet after a particularly tough third chemo last week!
Like Revcat I too like to think we are on the same side. I wonder how much it boils down to how we all differ psychologically in how we process and deal with the very difficult hand we've been dealt. I personally have no particular issues with how people choose to process this-some people choosing along their journey to believe that they have 'beaten' BC and others acknowledging that there are no certainties after this diagnosis.
I definitely fall into the latter category as thats how I approach the world and how I was prior to my diagnosis. Some people are different and perhaps Bernie Nolan was such and didn't think that she may have any particular responsibilities to anyone else when expressing this (I'm not saying this is right or wrong).
That said I agree the media doesn't portray the realities-when did it ever? The fact is that BC is complex and much debated even amoung the medics/researchers etc etc.Thats part of why this disease is so hard to deal with.
Angelfalls
Member

Re: Bernie Nolan diagnosed with secondary cancer

Key features, you will also have noted that the terms "curable, survivor and all clear" are in speech marks; these are terms used by others, not by the writer. It's another way of her saying "so-called". In other words, the writer agrees with the majority of posters on this thread. But of course she does; she has secondaries.

Yes, of course people know that cancer kills, but as the blog shows, many people don't understand that metastatic BC kills. Hence the "but you're going to be ok, aren't you?" type comments that we all have to deal with when living with secondaries. And at least part of the reason for this is the pink, fluffy portrayal in the media, which suggests that BC is an "easy" cancer to cure. And the "curable, survivor and all clear" "only a year out of my life" labels only feed into this. Which is also why so many with a primary diagnosis find it difficult to reconcile their own situation (body image issues, depression, fatigue, loss of libido, lymphoedema, vaginal atrophy,... all problems that continue far longer than that magical year in the life), with that portrayed in the press. And why so many women continue to seek support via these forums, for example, when they are many years out from their initial primary diagnosis.

RevCat
Member

Re: Bernie Nolan diagnosed with secondary cancer

@ Mrs Blue, loving your new November avatar pic. And loving the link too (if I am allowed to love it, not sure what's the right word).

I'm really sad that this thread is becoming (imo) so quarrelsome: I know I'm a wuss who dislikes conflict (though enjoys debate). Thank you Stage 4 ladies for your gracious responses and informed input. Of course we are all entitled to our own views but, as others have said better than I can, I also like to think we're all on the same 'side'. Sorry, just my opinion.
Janet_BCC
Member

Re: Bernie Nolan diagnosed with secondary cancer

Dear All,

Please could I remind you all of our Community Guidelines, particularly this section:

Our community guidelines

These guidelines aim to keep the Breast Cancer Care forum a friendly, welcoming, supportive space for people affected by breast cancer.

1) Be kind to each other.

Many people using the forum are going through difficult times. A few words of kindness can go a long way. Be especially nice to new posters – it can be very nerve-wracking to post on the forum for the first time.

Give each other the benefit of the doubt: it can be very easy to misinterpret other people’s comments, especially when read or written in haste. Sarcasm and humour are particularly easy to misunderstand.

Please don’t post comments just to annoy or inflame other users.

2) Celebrate difference and disagree respectfully

A wide range of people with very different experiences use the forum. Differences and debate are very welcome, but this is no place for personal attacks. Please make your points politely and respectfully. Equally, be prepared for people to disagree with you and try not to take it as a personal attack when it is not meant that way.

A couple of tips suggested by forum users:

- “Think before you submit” – if you disagree with a post, think it over before you post your response. Try drafting it first, then read it over to make sure what you’re saying is clear and respectful.

- “Attack the post not the poster” – that is, disagree with the points made, but don’t be rude about the person making the point.

Don't post any content that treats anyone unfairly because of their sex, sexual orientation, race, colour, nationality, ethnic or national origin, religion or philosophical belief, disability, gender identity/reassignment, marital status, family circumstance or age; or anything that is threatening, obscene or in any way offensive. Please do not swear or use terms that people find offensive.

Best wishes

Janet

BCC Moderator

keyfeatures
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.
Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

keyfeatures
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.
Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

Chatty_Katty
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.
mrsblue
Member

Re: Bernie Nolan diagnosed with secondary cancer

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
http://www.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.
lizcat
Member

Re: Bernie Nolan diagnosed with secondary cancer

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

keyfeatures
Member

Re: Bernie Nolan diagnosed with secondary cancer

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?"
lizcat
Member

Re: Bernie Nolan diagnosed with secondary cancer

Juliet66 - thank you so much for being too complimentary! Not to mention how well your post is worded xx

keyfeatures
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.
cornishgirl
Member

Re: Bernie Nolan diagnosed with secondary cancer

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
Angelfalls
Member

Re: Bernie Nolan diagnosed with secondary cancer

This was in today's Independent, written by someone who's living with secondaries:

http://blogs.independent.co.uk/2012/10/31/secondary-breast-cancer-but-youre-going-to-be-okay-arent-you/




juliet66
Member

Re: Bernie Nolan diagnosed with secondary cancer

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

Angelfalls
Member

Re: Bernie Nolan diagnosed with secondary cancer

Carrie, Bernie won't "come through this". She has secondaries. That's the point.

carrie35
Member

Re: Bernie Nolan diagnosed with secondary cancer

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!!

lizcat
Member

Re: Bernie Nolan diagnosed with secondary cancer

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!).

applestreet
Member

Re: Bernie Nolan diagnosed with secondary cancer

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
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

Angelfalls
Member

Re: Bernie Nolan diagnosed with secondary cancer

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*

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

Zeppa
Member

Re: Bernie Nolan diagnosed with secondary cancer

Well, Nicky, I haven't got secondaries either, but I don't want to be lulled into a sense of false security. I don't actually look at which section I'm reading, I tend to go for the latest posts. It worries me too if the papers keep saying people are cured. It not only encourages people i false ideas about breast cancer, it also supports the widely-held view that when OP, chemo and radiotherapy are over, you're back to perfect health.
I wish all ladies with secondaries all the best.

nicky08
Community Champion

Re: Bernie Nolan diagnosed with secondary cancer

I have read this thread for the last couple of days without contributing and it has shown both sides of the BC coin. Those with primaries mainly don't want to know some of the harsh facts that us ladies with secondaries actually have to live with - I know I certainly didn't want to know these things 9 years ago. They would have scared me witless and I understand why some comments have been made. However for us secondary ladies, Bernie Nolan included, we are living with these facts and are of course part of those statistics. Having said that I hope that we can help primary ladies to realise that there is life after that dreadful diagnosis and many of us are living well, pain free and enjoying ourselves despite being secondary ladies. And, Supertrouper, never apologise for reading and posting on a secondary part of the forum - just don't actually join us, none of us want to be here 😉
Back to the main point of the thread though, I hope the treatment Bernie Nolan is now getting work well for her and that all the publicity about her diagnosis does raise awareness of secondary BC.

supertrouper
Member

Re: Bernie Nolan diagnosed with secondary cancer

I said I was going to back away from this thread, but just wanted to say that I am sorry for butting in on a thread that is posted on the living with secondaries area. I really have no reason to be here and hope I never do. But it is a comforting thought that there are some very strong ladies in here if I ever need to join this group.