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.
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.
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.
@ 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.
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.
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.
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.
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.
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.
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 survivorbut 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
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
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.
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
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.
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
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.