While I a think BCC are a wonderful charity, and am very grateful for everything they do, I think the new “moving forward gallery” is a real mistake, because it lacks balance. By having a gallery that only presents people who have been successful in their treatment, they present a distorted view that really doesn’t help anyone, and has the potential to be quite damaging.
I am actually all in favour of having positive messages of hope to comfort those who are newly diagnosed and frightened. I also take a fairly pragmatic view to things like the pink campaign because I appreciate that it’s important not to alienate people. However, I don’t think it helps anyone to have only stories about those who have been successful and have supposedly moved-on, because the reality is that sometimes people are cured and sometimes they are not. By presenting only those who have come out the other side, the gallery distorts the truth, and could potentially raise false expectations (as well as undermine the campaign to have BC taken more seriously).
A couple of people on the moving forward thread have commented that we all know that bc can kill, so there is no need to mention it. They also say that there is no need to look at the gallery, but one of the fundamental aims of this forum is to provide information - and that information has to be correct, and balanced. In this case the information is distorted and unbalanced.
*WE* know that BC can kill, but do the general public? From my experience, no.
“It’s curable these days”.
Yeah, right. Whatever.
Lemongrove, perhaps to balance what you see as an overly positive view of BC survival, you could suggest an “In Memoriam” gallery, for people to post the RIP messages and tributes to those who haven’t survived. I know you mentioned having RIPs in the gallery.
I have also been asked if I’ve got the “all clear”, I just reply that there’s no such thing with BC, I just have to hope that it doesn’t come back as secondaries and that I’m at much higher risk of getting it again than the general population.
I like the gallery as I think it gives people hope and strength to get through treatment, but we have to be realistic too, so good idea to have both galleries CM. As someone on a thread said “we all know we could get run over by a bus one day, but once you have BC, you can see the bus coming”
I spent 11 days in hospital on an oncology ward over Christmas and new year. I was quite well really and just on intravenous antibiotics, before resuming chemo. It was very salutary. Most of the people there were quite poorly with secondaries.
Choccie, I don’t think an additional gallery is the answer, because those who go to the moving forward gallery won’t see it, and so will still be mislead by the distorted information they are receiving. I would prefer to see an additional category within the moving forward gallery, so that in addition to the 2 year - 5 year categories, there is a a category for stage 4 peeps (after all we have to get on with life as well).
The other thing is I’m not comfortable with the title moving on. I know of people who were diagnosed 20 years ago who still live with the fear of a recurrence. Think I would prefer something like living with Breast Cancer (I’m sure somebody cleverer than me can come up with something suitable).
Once I heard the words that I had cancer, I don’t feel that I will ever “move on”. It will always be the monkey on my shoulder.
I have to agree that ‘moving on’ may perpetuate the sterotype that after treatment for bc, women get the ‘all clear’ + are ‘cured/ over it’ etc. In reality I think only a tiny minority are ever able to move on (and that’s probably due to them being ignorant to the awful truth about bc),whilst the vast majority are changed forever + live in fear of recurrence/ spread. Sadly we all know that we can never be sure we are over it + Thus cant move on, since bc can rear it’s ugly head again after many many years.
However I believe it’s also important to offer hope for newbies- it’s just about getting the balance right I guess.
I think the big issue lies much deeper in society’s views about bc. I almost feel like some sort of freak because I was dx so young (it’s an old womans disease according to the media)- especially given that mine came back + I never got the all clear (bc is curable after all isn’t it??). I could go on for ages about my annoyance at bc being trivialised in the media but won’t…!
I haven’t looked at the gallery + don’t hold very strong views either way, but the notion of ‘moving on’ doesn’t sit right with me. I do however think that including secondary ladies is a good idea + may actually be reassuring (rather than scary) to newbies too, by showing that life goes on + some live many years + have an active + full life despite a stage 4 diagnosis.
Just a few of my thoughts…
I guess BCC createrd this for a purpose and a target audience, probably to show newly dx people that people do come through bc and go on to leed their lives. I know that not everyone is that fortunate and I know the outcome is not always so favourable, my mother died of bc, I have seen the reality of bc secondaries.
But I certainly wouldn’t want, whilst waiting for results or dx or even when waiting to see if I had mets (as I was last week) to look at grim statistics or pictures of people looking like my mother did. I appreciate that it is the reality of bc but we are all different and that wouldn’t work for me.
I guess there are different galleries of publications for different purposes. A campaign trying to make people aware how serious the illness is would be different to one showing that people do survive and live with bc.
Before criticising the gallery, I would prefer to understand what its purpose is and not assume that it will meet everyone’s needs or expectations.
And sorry to be contrary but I am fully intending to move on with my life and that is certainly not because I am ignorant, just that I can only see benefit in living my life a day at a time and not wasting whatever time I have left being miserable because of what MIGHT happen.
Oh dear…
Really sorry Mary grace I didn’t mean it like that at all- so I’m sorry if that’s how it’s read. What I meant was that people can only really fully move on if they are ignorant (unaware) of the risks of recurrence etc. I know many ladies do strive to move on + quite rightly so, what I meant was that sadly, most ladies can’t switch off + always live in fear rather than mving on in the true sense of the word. I know if my bc hadn’t recurred I would have done my best to move on but would have always gone into panic over every ache a pain…
I hope that’s clarified my point- I really don’t want to cause upset I’ve had my fair share of controversy on here. My point has just been misinterpreted, sorry.
Apologies again x
As may have been said elsewhere, what is the point of a ‘gallery’ of pictures of the faces of people who have ‘survived’ BC on a site such as this?
To me, pictures on a BC site are pointless unless they show the nitty-gritty eg. reconstructions, scars, etc. The faces are irrelevant as BC is no respecter of persons.
Nor do I think a morbid gallery of people who have died would be a useful addition either.
And to Gingerbud - I am one of the people who do want to move on even though I am not at all ‘ignorant’ of the risks of recurence - I just want to live my life as if I will be OK - what’s wrong with that?
I agree with CM about having 2 galleries and also with Mary Grace. No one chose to have this disease and yes it’s S** t, and my prognoses ain’t the best, but I would rather read how people are inspiring one another, rather than fear of not surviving. We all know that not all with bc survive, but I for one will not waste my time keep looking at the negatives cos that just makes me sad and bad tempered being angry with the world. I want to enjoy all the time I can, and for me that means bring positive as much as possible.
This is my second reassurance on the bc roundabout in the last 3 years so I do understand that we are never clear of it.
Hi All I think thats a good idea CM & if they put in down the left hand side
<<<here by=“” each=“” other=“” whoever=“” wants=“” to=“” see=“” can=“” which=“” ever=“” one=“” they=“” like=“” both=“” if=“” wish=“” too=“” p=“”>
</here>
I also agree with Mary I too could get mine back IM TN say no more we know the score when it comes to the 1st 3 years, but I can’t I won’t waste my energy on threating over it coming back, Ive got too much to do with my life I was born a worrier & im sure Ill be a bit worried over aches pains & bumps as much as anyone else who been diagnosed but I promised myself that I need to live my life not looking over my shoulder & worrying over something that may or maynot happen.
If BC has tought me one thing its this Ive not really been one to grab the bull by the horns & do in life what I always wanted … I sure as hell am going to now I will take everyday as it comes & enjoy each day as if its the last. What else are we meant to do sit about worrying are selves stupid, that in itself can cause problems. Yes I might die & sooner than I want to, I just dont want that black cloud hanging over me invaising my every waking moment NO WAY thats not living, thats just excisting & Ive done enough of that these past few years
Mekala x
LemonGrove ? Gingerbud I really do feel for you & understand you feeling this way I truly do, but is it fair to class those that do want to move on as ignorant of BC ? Ive met several women/ men over the years who have said once their treatment (not jusy BC) is finish the words they say when asked … what next is *Im moving on* doesn’t mean they dont have the same thoughts & worries, just means they are getting on with their lives & only worry IF & when there is something to worry about. The women that have put their pictures in the gallery are mainly the one who have finished treatments & now want to get back to some sort of normality THEY have chose to put themselves in there because they feel its for them. I cant see that it is going to delude any newbie to the true facts of what has/ will happen through treatments & beyond/ reccurances secondaries meds there is enough of that on the site I & will use the appropriate threads when & if I need them I hope to God I don’t it doesn’t make me ignorant I know full well I might be one that does.
I think calling those who want to move on as *ignorant* a bit of an insult to how they want to deal with their journey
I said I wouldnt rejoin this discussion but I think it matters so here goes.First of all I do not want to upset anyone especially anyone who is gravely ill.
Re ignorance:
8 years ago my cousin was dx with tnbc
7 years ago my lovely aunty died 2 yrs after dx with bc
6 years ago my 55 year old cousin died of bc
4 and a half years ago I was dx with tnbc
1 year ago my best friend died of bc
Anyone who believes that people dont die of bc must be blind and deaf.
BUT we dont all die of bc.Some of us will live out our ‘normal’ lifespan.
When I was dx I found endless statistics about early death,recurrence,metastases-the aggression of tnbc.
I found nothing about those who lived and were ‘moving forward’ and it would have helped me so much.That is why I put my photo in the gallery.
As for In Memoriam-we have a whole section of the forums devoted to our grief for those who have gone,we have an End of Life section for those approaching death.Anyone who needs to read those stories can do so.To be honest,on a forum like this,I feel it is much more important for new members to see that there is hope of a future.Why do some of you want to deny them hope?Acknowledging that many survive isnt diminishing the suffering of those who dont.Surely the last message we want to send out is that its all hopeless?Every member here will surf the forums,read about those with secondaries-the treatments denied,the chemos suffered,the memory boxes and memorials-it is all here already.Why not a gallery of hope as well?Please why not?
Valx
Hi
What I really wanted when I was first dx was to see some real people who had come out the other side of treatment and were getting on with their lives.
That doesn’t mean they are not fully aware of the reality of bc, but that is was possible to find a place for those anxieties and they were able to be happy. I know many women now who have been dx in their thirties who would be incredibly demoralised to think they had to live in fear for the rest of their potentially long lives. BC has a huge mental impact and we have to treat the mind as well as the body. Hope plays a huge part.
Newly dx people will very quickly get an umderstanding of this cruel unpredictable disease. They have a sharpe learning curve. But with some added information I don’t see the harm in seeing the faces of some people who have found enough peace of mind to face the future.
I think it is Belinda who has regularly posted on the sec forum a link tothe inspirational tales of women in Australia who have lived positively with secondaries for many years. This thread has always been greeted with a warm welcome by many. We do not know the details of those women, but the fact that they exist lifts spirits.
There is a difference perhaps between how we need to educate the public on the reality of our world and what we may need to keep us fighting mentally.
I do agree that there is a difference between a primary and secondary dx and I only speak from my own point of view.
I have sat looking at this post for a while wondering whether to submit this. But meh! It’s my opinion.
Debx
Hi val
I did try to explain my comment about ignorance which seems to have been msinterpreted. What I meant is noone who knows the true potential of bc (as u and all of us forum membErs do) is fully able to move on from bc. Yes everyone will do their best to move forward- that goes without saying. The people I was refering to are those who choose not to ask the doctors any q’s, or look on the Internet etc. I myself have met several people who prefer not to know (ignorance is bliss + all that hence my comment). These people who don’t read the horror stories are more able to move forward + they are unaware of the full facts+risks. for the rest of us, bc will always be with us…
As I said in my post, newbies need reassurance + I haven’t even looked + tge gallery + so can’t comment. My point was about the notion of moving on. We all try to get on with LCD (even with secondary bc) but do we every really move on?
Hope that clarifies my position- really the people on here are the last people I want to offend 
tina x
Hello
I have also hummed and haa-ed about taking part in this, but decided to put in my two pennorth. I was first dx’d with bc 14 years ago, and this forum didn’t exist, nor did any local support group. I spent a couple of hard, lonely years before I set up a local group myself and joined BCC as a volunteer. things got better for me, and I did move forward, in a way, there is no choice, if you want to be part of the rest of the world.Work and children and family and friends, if you want all that life, you move forward.
I had 12 good years before I was dx the second time. I knew what bc was, what a threat it was to me and what I needed to be mindful of, and I lost a lot of friends, but I did move forward. Loads of us do that, and if it helps people to see us doing that, I’m all for putting my pic up.
We all have to be careful when there are strong feelings involved, but surely the purpose of the forums is support as well as discussion, we need to be respectful of other points of view, as well as our own. Sound like I’m preaching - don’t mean to, Sorry!
mon
I thing the gallery is a WONDERFUL idea!
I am so, so sorry for the woman who have to live with secondaries, it must be truly awful, HOWEVER, 75% of women who get bc don’t die of it - a vast majority. It is very important that we hear stories of hope, for without hope we have nothing.
If some women do not want to delve into the what-ifs and maybes of a bc dx then good on them. I am surprised with how much I think about a reoccurance, but then I am not taking my tamoxifen and I probably should stop coming in this site, but I am moving on. I want my life back, albeit slightly different one than before dx, but change and suffering is just a part of life. My life is on ehte whole back to normal, I feel great, it does get better. That is something to shout about
BTW, who cares that the general public think bc is ‘curable’ or not. I am quite pleased they do because now everyone treats me entirely normally, my bc is not part of my persona, not part of ‘who I am’
rant over