Thanks for all your feedback on this thread. I have spoken to the Clare Kemsley from the BCC Moving Forward team and delivered all your comments. She has read through the thread and wanted me to pass on her message below:
“Thanks for all your comments and suggestions. We really appreciate your feedback - we’re looking at the site now to make sure the gallery is as useful as possible. As time goes on and more people add their photos, we hope the gallery will represent the full range of experiences - good or bad - of moving forward after treatment. Thank you again for your input.”
Perhaps those who have secondries could put their pictures there too with 'their words of how they are at this point that way it gets the whole scale across ? that was a good sergestion about changing the title ‘moving forward’ I also agree with those that have said having stage grade & type a good idea. Then those who are in the same group can relate more to those ladies & to where they are now
Hi Val I just read yours im TN & that is so well put and yes its very encouraging for me as im sure it will be for those also TN I too felt the same when I read about TNBC when I was diagnosed it just made me stop looking it up as it was just too dark & hearing your story put a smile on my face as I only seem to see/ hear the bad where TN is concerned. So even if I see one positive post now & then it helps me at the stage I am at right now. Thank you
Mekala
A number of very useful suggestions have been made:
a) changing the name to something like, ‘Living with breast cancer’ (this encompasses everyone - those with primary or secondary breast cancer and those who have had breast cancer);
b) having a format where contributors are able to provide detail on the year of diagnosis, type of breast cancer, stage at diagnosis, lymph node involvement, hormone status, type of treatment(s), primary or secondary, BRCA status, their gender, age and ethnicity, etc;
c) having a format that gives sufficient space for contributors to provide far greater detail about their experience and where they are at now;
d) having a searchable database;
e) having a format that allows contributors to include photographs of what they look like post-surgery (I too would recommend breastfree.org);
e) and being clear about who the intended audience is and what the purpose of the Gallery is, and stating this.
Importantly, the message from Clare Kemsley misses the point: ‘will represent the full range of experiences - good or bad - of moving forward after treatment’. Unfortunately, some people never reach the ‘after treatment’ stage.
I think the opinions above show how difficult it is to get the balance right. Of course it’s a good idea to provide comforting stories of hope to newly diagnosed people, but if that involves glossing over the realities of cancer it doesn’t really help anyone -because it lets policy makers off the hook, allows the media to present breast cancer as almost a fun disease , and worst of all denies the relevance of all those who are dancing with death, or lose their lives to BC every year (currently aroud 12,500 in the UK).
It’s not just stage 4 who are devastated by this disease. I know of women who were diagnosed with stage 1 BC 15 years ago, and they tell me there has not been a single day when they have not had the worry of it returning (and I also know of women who have had it return after 20 years).
By all means have a gallery, but a gallery that shows the variations of this disease. Have pictures of stage 1 peeps, but also of headstones (grim I know - but it’s the way it is).
I think a gallery to remind people that they may die of bc is oxymoronic-we all know that.What many newbies,especially older women, need is a gallery of people who are surviving.They need to know that there can be a sort of normality-they can live to nurse their grandchildren etc.I am desperately sorry and so very aware of those who wont have that[my own best friend died of bc mets last year aged 48]but thay doesnt mean it is wrong to show the other side of the coin and that is all that this gallery is trying to do.Nobody has to a]contribute to it or b]look at it and being relentlessly negative helps nobody I’m afraid.
Valx
Val’s comments sum up exactly why I took part in the gallery. When I first came to BCC scared because I’d found a lump and then had a long drawn out series of tests before diagnosis, what I wanted were the following things:
Information
Support
Advice
and Hope!
The BCC forum gave me all four and for that I will be forever grateful. I understand completely why those living with secondaries/aggressive cancers feel very uncomfortable/upset at the idea that the gallery shows positive outcomes but for some people there are. I also think that perhaps a bit more information about each person regarding dx/treatment would be a good idea too. I would certainly have liked to add a bit more detail so that I can show that things are definitely no bed of roses.
Honesty and realism are extremely important but we also need to hold out a glimmer of hope too.
All I wanted to do is give some hope and Horace sums it up well on the older womens side .
I’m going to speak about my mum and my gran now. My mum had bc 19 yrs ago and it came back in her other breast after 17 yrs - she’s now in remission again; my grans came back after 10 yrs but it had already spread and she died within the year, so I am only too aware that yes it can come back and yes it can kill you.
I’m certainly not trying to gloss things over or play down the severity of it but there are some people out there that need to know you can get through it, that’s all.
People like my mum who when she got a mastectomy wear brochure she was amazed that the models had all had bc - then when I was dx she got the brochure out again to show me - “Look at these women they’ve all had bc and look at them now” and when I saw the gallery it reminded me of the hope in her eyes when she showed that brochure to me last year; I saw the hope that her daughter wasn’t going to die. We don’t know that, nobody does, but it gave my mum hope,… and that’s where I came in…
… and everybody is entitled to their opinion, the world would be a very boring place if we all agreed wouldn’t it.
Horace, personally speaking I don’t have a problem with showing positive outcomes, so long as it is balanced with other outcomes.
Many people do come out the other side, but many don’t, and if we only show those who have positive outcomes it presents a false image, and perpetuates the problems we have at the moment.
Just had a look at the gallery. I immediately felt pleased as i read about a lady dx age 36 in 1996 and no return of bc to date. I was dx at 36 and it has given me hope that ordinary women get bc and that there are ladies in my position who have re-engaged with life after their dx and are doing well. There aren’t many 36 yo ladies in my area with bc, it is isolating, so photos of normal women do help me. And when i have a (not infrequent) wobble, i may now click and read these stories to balance the negative scary thoughts in my head, and it might save me a fortune at my local greengrocers if i stop going there on bad days to feel reassured by the owner, who had bc herself at age 35 nearly 16 years ago.
I have just read through the stories in the gallery and I do feel that it will prove to be a useful addition to the site and one to which newbies can be directed when they join.I am coming uo to 5 years post dx so still get a few wobbles-the more stories I read of those still here after 10,15,20+ years the better I feel.
Val
So what about the thousands of people who have lost their lives, or are going through hell dealing with it? Are we to ignore them, just so that we can present a positive spin for those who require comfort?.
Apparently the answer to this lack of balance (according to a couple of peeps here), is that as it’s common knowledge that people die of breast cancer, we don’t need to know about it. Alternatively, if people don’t want to read the happy clappy stuff, they don’t have to look at the gallery. How selfish, dissmissive and disrespectful.
The simple truth is that sometimes there is a good outcome, and sometimes the outcome is bad. If BC Care do not present both sides, they are undermining all those who have been campaigning for policy makers to take the disease more seriously, and devote more resources. Worst of all they are making all those who have lost their lives invisible and irrelevant.
I hold a copy of the Moving Forward campaign pack of which the online photo gallery seems to be a ‘spin off’. The pack is practical and thorough and aims to help you cope post treatment and moving on from bc. This is very useful as in my experience finishing your initial round of treatment is scary business. The pack recognises this and tells you that you’re not alone with your fears, lack of confidence etc. And it is good for bc patients pick up their lives, family, relationships, work, socialising.
One thing that the pack does not and cannot address was my need to talk to ladies with a similar diagnosis. I am not in the ‘Has anyone been given a 93% chance of no recurrence’- group and I view my post primary bc treatment time very much as tightrope walking. I may be fine, I may not be fine. The future will tell.
Therefore, for me a gallery of people moving forward without the vital stats of type of bc, staging, node involvement etc is of limited value. The discussion here has focused on the value the gallery may offer newbees. Well, when you’re first diagnosed the tea & sympathy team (my name for the BCN’s) will tell you that a majority of patients survive bc these days. So I think that all newbees hear this. And when a newbee starts a thread about their wait for results, fear at dx etc, without fail, they receive an enormous amount of support from members.
For me, my mum was dx with bc 30 years ago, and she is still around. She had a mx plus ANC, no node involvement. It’s so long ago we could not even trace her bc type. So far great. BUT my dx is very different to hers and I get sick and tired of people saying:’ Oh, look at your mum, she is still around. I am sure you’ll be fine’. There is no point me even trying to explain.
To cut a long story short, I think that BCC has a role to play in communicating that:
Every bc is different
After primary treatment you don’t get the ‘all clear’ (if I got £10 pounds for every time I have been asked this, I would be retiring on a Tuscan hillside)
Around 25% of ladies who are dx, die of this rotten disease
When primary becomes secondary, there is treatment, but no cure
So many people do not get these simple facts, so BCC, whilst you do a fab job in supporting us, there is a lot more balanced comms to be done about the more serious sides of BC to us and the outside world.
I will not put my photo up. I am 4 months post primary treatment and putting myself in the first two years category might be tempting fate.
I can see that the gallery might be a comfort when you’re first diagnosed. It’s always good to read of positive stories as so many people say unhelpful things like ‘Oh my aunt had breast cancer but she died. Lucky you caught yours early’.
I’m not sure how I feel about it now except it does make me feel a bit inadequate. There’s not much on lymphodema, there’s a lot of women who’ve had reconstructions and not many women who talk about the terrible fatigue you can face post treatment or headaches etc from tamoxifen or menopause or who’ve had to give up their jobs. But then that wouldn’t be very inspiring when you’re first diagnosed.
I do also understand why women diagnosed with secondaries may not be happy about it. It would be nice to see a section on that too.
I do agree with everything that NIM41 has so eloquently said. That lack of connection with other women who’d had a similar diagnosis or who faced similar problems with treatment felt so acute.
I’m sorry that does sound quite negative! I think it’s something we can opt to look at or not. So if it’s helpful for some people then it’s a good thing. Elinda x
selfish
dismissive
disrespectful
How could you say that?
Selfish-to offer to share the worst times of our lives hoping to give others some hope.
Dismissive- when we have all lost friends and faced our darkest nightmares,wept over every pain and pimple and cared deeply about every death and new mets dx.
Disrespectful- to acknowledge the bleak realities and laud the strength of those facing the very worst.To offer all that a cyber relationship can in terms of support and compassion…
I’ll add another-disgusted-that anyone could take a simple benign addition to a website and make it into something bad.
I am not ashamed of what I have said but I find myself feeling a little discomfited by some comments.
Val
I really hope that that BCC post wasn’t directed at my last post as the last thing I would want to be is lacking in respect for others here or in real life.I do wish it was possible to share differing points of view without rancour.
That was my last post on this topic.
Val
I think what is being forgotten is we do have a choice to look at the gallery or not to look at it, same as all the links in pink down the left hand side of the site, If its something I dont want to read I wont I think BCC has got a good balance with relevant links to the information each individual needs regarding stage, grades, primary, secondary, etc etc & I personally have had no trouble connecting with others at the same stage & having same treatments at same time which has been great help.
I am finding it very sad that we can’t celebrate another members joy at moving forward, and I find the " happy clappy" label disrespectful. In tn with not a good prognosis, but I still smile at a good news/ hope story. While I’m not working I help out at a day centre in my village. An elderly lady there got the all clear for bowel cancer a few weeks ago, she was sad as she put it cos she’s old and fine and I’m not. But I was so pleaded with her news, I wasn’t angry, and that’s what I get from others being positive, So to all you ladies and gents who have shared your thoughts and stories, Thank You, cos your story stopped me thinking " This is it" to actually looking forward to my birthday this September , last Xmas didn’t expect I would have been here.
i agree blue dragonfly , because we have tn doesnt mean we cant be happy for others and the gallery is there if you want it and to be perfectly honest if i got the chance to move forward i would be on there in a jiffy but at the moment am moving backwards lol love to all x