Thanks for everybody’s feedback so far. We want to reiterate, and sorry if this is not clear from the survey, that by the term ‘body confidence’ and the feedback we have had, we hope to encourage the media to look at this issue in a broader way and also explore areas rarely discussed like the effects of long-term treatment, chronic fatigue, the feeling that your body has ‘let you down. ’
Whilst respecting that these are not areas that everyone living with secondary breast cancer may feel are important to focus on, we want to ensure that any work we do around body confidence as an organisation does not exclude the experience of many living with a secondary diagnosis who have said it is important for them. The media is starting to talk about cancer in a different way and more people recognise that there are many now living with a secondary diagnosis. There is of course still very little understanding of what this may mean and ‘body confidence’ is one route to talk about wider issues.
We have not in any way set out to belittle the experience of anyone living with a secondary diagnosis and we do not want to give the impression that this is the only issue to highlight. We continue to talk to the media about the isolation and lack of support that we know so many people are dealing with on a daily basis.
Best wishes
Sophie
Press and PR Manager
Sophie, thank you for your response, however I still feel that this campaign is widely off the mark. I think we all understand how difficult it is to ‘sell’ our type of stories to the media, but giving an impression of secondary patients bravely soldiering on gives a false impression of what it is like to have metastatic cancer. Most of us are just ordinary people who are trying to live our lives under extraordinarily difficult conditions. I still believe that most people don’t understand what a secondary cancer is, unless it has touched their lives. I bet that if you did a poll outside your offices, many people would not be aware of what secondaries mean. Surely this is one of the issues that still needs addressing as well as the sad fact that around 12,000 people are still dying from breast cancer EVERY year. I know statistics are blurry with regard to how many people are actually living with secondary breast cancer, but I do wonder what percentage of patients do go on to develop secondaries. How does ‘Body Confidence’ represent us to a wider audience, how is that helping us? Really?
I attempted to fill out the survey but was unable to.I have read your explanations re the choice of issue still makes no sence to me.The only ‘body confidence’ that applies to me is if my body is responding to treatment and therefore enabling me to continue living with secondary cancer.
My issues are whether treatment is working,how the side affects of the treatment are intruding on my daily life,the fatigue caused by drugs and treatments,the constant pain I have suffered for 4 years,the shock of being diagnosed with secondary cancer dfrom day one.
If these issues count as body confidence then fine I think it is a good idea.If you can explain these issues to the outside world and make them understand what it is to live with a secondary diagnosis then I agree with what you are doing. I am however not convinced that this is the case unless I have completely misunderstood.
I appreciate all the work BCC do but I do feel that they should also convey how we feel and represent our wishes and feelings.
I agree with the other ladies here. I read the survey and nearly fell off my chair (dangerous for someone with bone mets!). I couldn’t imagine a topic more alien to me with the disease. More confusing for people without. And more trivialising. This morning I am sad. That BCC is so unaware of its community’s priorities. Deeply ironic when we’re discussing an AWARENESS day.
I have to apologise to all who have responded to this thread. I thought you were exaggerating. I have just completed the survey and can’t believe what I have read. BCC please change this campaign.
I agree with all the comments on this thread. I have completed the survey but consider that the topic is totally inappropriate. I regularly go along to the local secondary breast cancer meetings and appreciate all of the work that breast cancer care do for us suffering but PLEASE can you change the topic for the secondary breast cancer awareness day. We need to try and promote the effects that people living with this disease have and their families and friends - especially as more people are likely to be impacted and as the treatments get better are likely to be living with the illness, whereas years ago this was not the case. Until I was diagnosed with primary and secondaries together I had no idea of the impacts of the disease and find that with most people this is still the case.
I totally agree with Angelfalls and all of the above. I personally find the decision to make body image the theme of secondary breast cancer awareness day almost insulting in it’s trivialisation. Listen BCC, I’m dying, so with respect, my main concern is trying to get the treatment I need to stay alive -not how I look. Talk about fiddling while Rome burns - what are BCC playing at ?
(3) I want to know how patients such as myself will access drugs not routinely funded when the Emergency Drugs Fund Ends in March 2014. For more information look at this article telegraph.co.uk/health/healthnews/9811415/Cancer-drugs-access-will-return-to-dark-ages.html
(4) I want to know whether I will be able to access certain drugs now NHS England have reduced the number of cancer drugs that can be funded from 46 to 28. For more info look at this article. telegraph.co.uk/health/healthnews/9972714/Cancer-patients-facing-race-against-clock-for-drugs-in-fund-betrayal.html
(5) I want to know why advanced radiotherapy treatments which are routinely available in other developed countries, are not available in the UK. In particular I want to know why when the UK have had Intesity Modulated RT machines since 2001, this form of RT is seldom offered due to lack of properly trained staff. I also want to know why Cyberknife Stereotacic Machines, are standing idle at the Royal Marsden, Mount Vernon, and Barts because treatment for stereotactic RT is so rarely funded.
(6) I want to know why terminally ill cancer patients who claim DLA under DS1500 rules cannot claim the mobility element of DLA if they can walk more than 100 metres.
(7) I want to know why NICE guidelines prevent doctors performing biopsies on secondary metastases, when research has shown that cancer frequently changes its receptor. Without this knowledge how can patients be assured of receiving appropriate treatment /not receiving inappropriate treatment? As NICE stakeholders, BCC should be pursuing this issue.
Just wonder how BCC will raise all the above issues under the heading of body image?
Well said Lemongrove. I want to add one more:
8) Why is there no data on the number of women living with secondary breast cancer? This should be routinely collected and available to Government, NHS, BCC and us. Without data, there will never be an appropriate prioritisation of issues, resources and funding.
Hi Lemongrove your ability to put the argument into such a concise way is brilliant.
So we’ll said.
I am a fighter but not a writer I m a good verbal communicator but this desease often leaves me lost for words.
I will read all of your leads and keep pushing for others to join in and voice their opinions.
thanks once again
Mara
Lemongrove thank you for expressing this so well as usual. I would also like to know why an oncologist cancelled my planned chemo on Tuesday (after my own oncologist went off sick). I would like people to know that some BC does not show up on scans. The oncologist cancelled my chemo as it showed my lump had shrunk to 26mm . In real life it is at least four times that size. My oncologist measured it before ordering my prescription. It would appear that even oncologist are not aware that scans dont show thw whole picture.
Am I concerned how people view my misshappen breast. Couldnt give two hoots (I am trying to remain polite). The only thing I am concerned about look wise is it is a constant reminder that I am dying.
Thank you again I am going out now and will be reading your links when I come back.
Thanks to you all for getting on board with this. I had started to think that maybe it was just me… Obviously not!
From the responses posted by BCC so far, it seems like they plan to use the term “body confidence” as an acceptable euphemism:
“body confidence” as a euphemism for losing the ability to walk because of bone mets;
“body confidence” as a euphemism for fighting for breath because of lung mets;
“body confidence” as a euphemism for having litres of fluid drained because of ascites (oh! if only they didn’t make us look so fat!);
“body confidence” as a euphemism for dying.
I would be happy to continue collecting scars and putting on weight if I knew it would cure me and allow me to live a normal life at the age of 41, instead of retiring and planning for my death.
I would also add to LG’s excellent list the issue of how many of us face losing DLA when the switch to PIP rolls out and the number of us being denied DLA, only to have it approved on appeal. These are real, political, NEWSWORTHY issues.
How exactly did BCC canvas opinion on this? Where and who did this idea come from?
In all my years on these forums, I’ve rarely if ever seen an opinion-based thread where every single poster was in agreement… Speaks volumes that we all feel the same, but BCC think they know best.
And BCC can’t offer us, who have secondaries, support by email.
I’ve posted about this here breastcancercare.org.uk/community/forums/living-secondary-breast-cancer/bcc-cant-yet-offer-email-support-secondaries
I understand that BreastCancerCare was originally set up (under a different name) to support those with primary bc. This could explain their emphasis. So maybe we need another organization specifically for secondary bc?
If anyone still thinks “body confidence” is important to those of us who are terminally ill, I suggest they read Jennifer Worth’s “In the Midst of Life”, which deals frankly but compassionately with death and dying.
Just to echo and thank Lemongrove for putting all our thoughts/ fears in such an eloquant way.
Just to add into the mix that I am meeting more and more younger women (40 ish) with secondaries. Screening is not offered and wonder if this needs looking into too, it may have prevented some if the secondaries if caught earlier!
Perhaps the campaign should centre around Treatment Confidence. Thats what I have to do, trust in our oncs and hope each treatment is working.
From the strength of feeling on this thread I really do feel a rethink is required.
Mel
Just to add to Buffy’s post, I too was diagnosed in my early 40’s and there does seem to be a growing number of us, I would guess many more of us being diagnosed at both a younger age and we are often stage 4 from the very beginning. As I have not had any surgery because of this I would add the possibility of developing fungating tumours and skin metastases to Angelfall’s list. I now have many informative links and the Jennifer Worth book to read up about, thank you! Thank you Lemongrove for such an eloquent post which speaks for so many of us, all of us. I hope this thread will make BCC rethink this year’s Awareness Day, surely there is still time? I really am trying to look past the obvious body confidence wording but, to me, it still conjures up a list of lack of eyebrows, nails and hair. I hope the strength of feeling shown here will make a lasting impact and challange BCC’s current approach of bringing Secondary Breast Cancer to the fore.
BCC I do not accept that body image is an issue that people with secondary cancer have told you is important. I actually attended one of the sessions you ran to garner information about themes that are important to those of us with secondary BC. At the meeting we were told that BCC were planning on putting together a booklet about body image, and were asked what body image issues we would like to see within the bood - we were not asked if body image was something we wanted BCC to raise . Thus it was a fait accompli, in that BCC had already decided produce a booklet. Admittedly those of us at the meeting should have told BCC that body image was not a major issue, but I dont think any of us, in our wildest dreams anticipated that BCC would ultimately use this as a central theme for the secondary BC awareness day.
BCC you must understand that there are major issues that concern those of us with secodary BC, and you must be prepared to address these issues directly.