Good to see activity on this thread, the more noise we make the more lokely we are (I hope!) to be noticed.
Mrs Blue good to see you posting not heard from you in a while , though I do only check a couple of threads now so might have missed your posts, hope you are doing ok.
Pam, just to put your mind at rest, Lemongrove is ok, she has been through a really rough time but does now seem to be getting stronger, she has had several set backs but her last op seems to have helped, will let her know she is missed.
Flo and Helen that was awful, I hope you are getting over the hurt, it's so sad when people just cannot recognize how their own behaviour reflects the very attitude they complain about.
I followed JaneRAs posts following my primary diagnosis....and followed her local progression etc....and was very sorry to hear of her death.....at the moment wheni click on bone mets thread it opens at page 200 and something....lots of names of ladies who are either not with us or not posting any more.
I particularly miss the informative posts of Lemongrove...anyone any updates on how she is doing?
I sent off the Cancer Research email to invite my MP to their stand at the Conservative Party Conference. He hasn't replied yet to say he'll go. I edited the email to reflect my situation - as one of his constituents - and to ask him to support more research.
I'm afraid I didn't know her as I was diagnosed in September 2011 but I've read her web pages with admiration, and have since looked at her Forum posts. I liked her straight talking attitude.
I do, however, remember Gingerbud from her posts at the time and it still makes me sad to think of someone so young losing her life to this awful disease and her husband having to raise their little boy without her. I feel bad enough about my own diagnosis but my heart really breaks for those people much younger than me and those with children to worry about.
This may sound a bit silly, and I know it's irrational, but with this latest Forum format I never wanted to click on the "I have secondary breast cancer" box because it felt like I'd be tempting fate, because I didn't have it. Of course, fate has caught up with me - albeit local-regional recurrence but still now incurable (I now understand how JaneRA felt). On the old Forum set-up I would see all new posts, including from secondary ladies, and I'd sometimes dip into them if I felt I could learn something or had a contribution to make, or to offer a bit of support. This set-up segregates everyone.
From my previous life as a primary - and again (I'm begining to realise I have some irrational thoughts!) I kind of felt like I was intruding, or prying, if I looked at, or contributed to, secondary posts.
I recently stopped posting on the Forum after being skirted past by some primaries after I'd been asked how I was doing and had mentioned I'd had a recurrence. I felt hurt when they were so gushing with their support for each other, specifically mentioning each other by name but just ignoring me - even though the thread was about how hurtful it is when non-cancer people avoid those of us who have had a cancer diagnosis. I found it strange how they couldn't see the comparison in what they did with me, even despite me mentioning it. I decided to duck out for a while as I was feeling too fragile to cope with the hurt and rejection from a place which I'd previously felt was a great help. I just did some private messaging for a while but I've been drawn back in now.
I certainly feel that money is an issue with some people. My, now former, oncologist asked me what he would tell the auditors if he gave me treatment to control my tumours. That was after him asking me, "What's your problem, is it stress?" to which I replied, "Yes it is quite stressful when you're not offering me any treatment to control the skin mets or subpectoral tumour!" He then kindly told me that "It's probably already spread everywhere anyway." But never mind, he also told me that I wasn't likely to die next month, or probably even next year......well that'll be alright then! Looks like I should make my 50s.
Luckily at my local independant BCSG - we now meet at the Breast Care Centre which is part of our hospital but in a separate building a couple of miles away. Some year's ago our co-ordinator asked those with Mets if they wished to meet separately, no they wished to stay with their friends but with added support from the attending BCN. Those ladies are no longer alive but I cherish the memories.
I never thought at that time that I would 'get it again' as they none of them had been triple neg. I have some good friends there who contact me after I've had an Onc appt. We meet monthly & sometimes we do a 'round robin' of our cancer journey so newer ladies are aware of those who are struggling on. The BCN is there as a friend & not in uniform, she doesn't lead the meeting, but interacts as neccessary re:treatments etc
When we do our 'Pink Tombola' twice a year at events in the community, or manage to get a supermarket collection we display our banner - we are your local BCSG - and are willing to talk about our status.
If people ask about the ladies they have seen before we do not hide the fact that they are no longer alive or too ill to be there.
I agree with the other posts on here we should not be 'shoved into the background'. We are an important group, primary ladies need to know that mets can happen to anyone and that support is not only here but with the Charities as well.
Hope that makes sense,
Excellent points Pam,
I don't think I've ever read anything about the issues for Welsh members. How can we help to support the Welsh ladies?
I must say though, that I don't think it is the mbc community that is making this a 'them' and 'us' issue with the primary ladies. I feel it is the reaction of the primary ladies and the bc charities to mbc members that have brought this about.
We would love to be included with the primary ladies - they would rather we didn't exist (apart from one or two very supportive ladies from the primary forum).
This is such a difficult issue and we must be very sure that we dont make it "them"(the primary ladies ) and " us". Because they are us less far down the road........But it is clear they are an easier group to deal with...larger numbers, healthier, longer surviving ...and thus a greater source of fund raising....also the group for which a "cure" is likely to be found first...(excluding prevention all together!).......Im not sure of the way around this .....but I equate it very strongly to the issue of Welsh ladies and their lack of access to many of the drugs widely available in England....ie many of the drugs not approved by NICE are essentially freely available in England via the drugs fund but not available in Wales.......we have to be clear that we dont oppose the extention of the Drugs fund in England but fight for greater equaty in Wales...something Ive never seen BCC post about.........the parallel being not to deny the primary campaign but to shout about the poor equality in publicity and funding...as many of the posts are doing.
the same issue is raised on the secondary forums year after year....BCC really need to take on board these feelings....post early and fully on their use of seconday BC day ....and gain our support for these far in advance rather than rushing to keep up with the postings a day or two before the day is on us. ....
Having thought more about the subject, I think that a lot of the difficulty I have with the pink fluffiness (apart from, I feel, trivialising the whole issue) is the whole celebrating 'survivorship' that seems inextricably linked to all the events.
To have survived something, that 'thing' must be over and the implication is that having survived it will not happen again. It is this, I feel, that automatically separates/ostrasizes those with mbc as they cannot say this (and with total certainty neither can the primary ladies).
Without the survivorship mantra we are all in this together with some further on than others.
As far as I am aware, there is not yet a cure for breast cancer, so how do all of these women know they have survived anything other than their treatments and why don't they know?
The misinformation that abounds about 'cure' and lack of information about how many people who have 'survived' bc will be throwing those t-shirts away in the future only perpetuates the myths and alienates those with mbc even more.
Trying to only present the 'positive' view of bc and outcomes, seems to have resulted in a delusional construct that bc can be cured and doesn't kill many people. For all the 'raising awareness' that is banged on about what have bc charities actually done other than hide the reality of the disease in case their funds drop - a concern, I agree.
So, in order for charities to maintain their funds, we hide in the shadows and keep quiet so as not to upset others and for what; a paltry few % of the funding? What charity devotes most of its time, funds and resources to those whose lives are not immediately threatened and more or less ignores those who are dying of the disease they claim to care so much about?
As Julie says, it is the mets that kill people so why isn't this focussed on?
I am aware that when bcc tried to present a more balanced view it was not well received by many ladies with primary bc as they felt it was negative and frightened them, but if there was more of a push on awareness of and treating mbc there might possibly be less to be frightened of.
I agree that sometimes posting stark mortality rates is probably not the best way to go, but there must be a 'gentler' way of getting the information through and maybe the 'survivor' mantra will be a little quieter.
Want to do a longer reply but am about to be served up dinner!
Thanks for ressurrecting this thread Tinks, Vikki would be proud of you girls for the fire in your bellies. I think that now we realise there are more of us we are feeling more able to speak out.
I'm pleased to see BCC are doing something more relevant this year, pain is an issue for many of us, last years 'looks/fashion' theme was so off the mark. So yes I think BCC are listening and trying to move things on but they are still wanting to raise money and pink and fluffy has been successful, they don't want to frighten the pants off primary women so our existence is tricky..... in other words BCC and other charities are on a learning curve and are going to have to approach things differently if they are truly to represent and help us.
We have to stop being the elephant in the room. As uncomfortable as it is, the fact is that we exist,we need to be acknowledged, more funds need spending on research for MBC/SBC...... BBC (Breakthrough Breast Cancer) has this year commited to do more about SBC, so that's a move in the right direction too.
However, whilst publicity claims bc is curable, that most women now live after dx (omitting that this based on 5 year survival), that early detection is the be all..whilst the facts that bc does mestastisize and does kill is ignored or hidden we will not beat cancer - to beat cancer we need to deal with mets!
In the US they can buy MBC ribbons/pins, here in the Uk there is nothing like that as far as I know or can find. We have the BC ribbon, we have the young bc lavender ribbon... but surprize surprize NO secondary bc ribbon, invisible again!!
Oops, think I better go and eat my dinner! xx
Belinda - missed your post as I was writing mine.
I really think you hit the nail on the head (pardon the pun) about how a secondary diagnosis messes with your head.
We all hope to live for a long time, but the reality of living 'with' mbc is living every second of every day with the knowledge that you are dying from breast cancer and that's bl@@dy hard at the best of times.
The fact that nobody seems to want to acknowledge that just makes it all the harder - perhaps I should have put that on my t-shirt.
I have been taking a bit of a forum break as the FEC made me a bit woolly brained and was quite ill with the last one, but yesterday was my 6th and last FEC - Yay, so I am relying on steroid induced hyperactivity at the moment (can get a little feisty on them too ).
I too was a little underwhelmed and agree that possibly happy people give more money but in that case, I don't think the pancreatic cancer campaign painted anything other than the reality of what an appalling and frightening disease it is and how dismal the outcome. I believe that their donations have increased (possibly at breast cancer's expense) and they used the pink and fluffy and misinformation about the realities of bc against bc charities and the funding they receive and I feel that is mostly down to bc charities refusing to tell it like it really is.
There are so many pink activities going on and I might have done Race for Life but would have wanted to turn up in a pink t-shirt saying 'I (and many others) will never survive' but I think I might have been knobbled half way round by the other participants so felt it best not to participate.
Where can we go and publicly show the reality of our disease - it would seem nowhere.
Was this posted in the Secondary section? How come we ALL missed it??
I did the 'Secondary Survey' luckily my pain is more of a continuous ache & responds to paracetamol. If it increases I use co-dyramol as instructed by my GP. as I have used it for non-cancer reasons. I received a follow up email request to do some 'media' interview about how I cope & control pain from the cancer. Not done anything about it as I don't suffer with pain thankfully.
Hello folks, and thankyou for reviving this thread. Come on BCC, I'm still alive and so are many of us, some doing well on treatment thankfully - others have had not such a good year - and yes, sadly there are those who have died from metastatic breast cancer. BCC "Secondary" person or people, PLEASE have the decency to make some response ASAP - definitely before the end of September plese - even if it's just to say
"we (BCC) don't care about you (us), just go on and die and don't rock the pink fluffy boat".
Rant over, now I will get on with my life...
Bumping up for Vicki and all the other ladies who are no longer here (alive) to fight for those of us with metastatic breast cancer and for ladies like Belinda who are happily still with us and have campaigned so hard on our behalf.
So BCC; what are you doing to promote awareness of mbc and to bump up funds for research into this area this year?
You promote awarness but nobody I've ever met even knows what mbc is or the chances of developing it?
Have sent an Email to register for this forum. I would appreciate it if BCC would confirm that this forum will not be limited to a question and answer session. When I have attended your forums before, we were asked to comment on what BCC had already decided were the issues they wanted to address. This time it should be about what those of us with secondary BC want.
Having managed various projects for the Red Cross in the past, I disagree. The Red Cross ran numerous projects, which were mostly funded by Government agencies, but all charities juggle income so it was always very difficult to ascertain what was going where. Also, in the late 1990's the Red Cross were singled out by the media as a Charity that spent a large portion of their income on management and running costs.
Personally I think transparency is a problem with many Charities. That's why I think we need to know precisely were the money goes.
By the way as far as BCC is concerned. The 12 million income I referred to earlier before was from donations. They also have a large property and investment portfolio, but of course the income they derive from this is subject to market conditions.
I sent an email yesterday about interest in this 'meeting' to put our views forward. Not sure it got there because my computer decided to go into Maintenance mode. I am glad that you do seem to be listening, but you should be taking on board that there are some of us who would like to be able to take part in something. After all BCC has been advertising its fundraising Pink Fridays for long enough.
The people you really should be educating the most are the Early Stage BCers and the BCNurses etc who just make us feel unwanted and unsupported because we are not fluffy Pink Survivors. I have not stopped being a human being just because I have incurable cancer but the whole process it a bit like being put on the Liverpool Pathway when you still have plenty of life left to live. Even if we are ignored we don't go away.
Ummm...why won't we know until Friday 11th? It seems utter madness to me. Honestly, if you read these forums thoroughly, you would understand our concerns without the need for a specialised closed forum.
I am very disappointed and quite angry, actually, at the woeful misinterpretation of what it means to have metastatic breast cancer. I understand the limited resources, but this year there will barely be a whimper...and on a Sunday, too.
As I have stated before, I was one of the original participants at the launch of Secondary Breast Cancer Awareness Day. Of the five women with whom I remained in contact, I am the only one still alive. These are the realities - along with anxiety over drug funding and the feeling of being 'secondary' in every sense. We are not the most reliable of groups - we are ill, we are having constant treatment, we die; however all of us here are passionate about enabling a better future for patients in the future.
I feel very let down.
Have sent an email to register interest, it tok ages to go through so hope you got it!
Thanks for continuing to raise your concerns about Secondary Breast Cancer Awareness Day activities with us here – I can assure you that we read all of your posts and are listening closely. I apologise that we’ve not been able to confirm plans for the day on the website sooner. Further information will be available on our site: www.breastcancercare.org.uk/secondary on Friday 11 October.
Breast Cancer Care is committed to marking Secondary Breast Cancer Awareness Day and continuing to raise awareness of metastatic breast cancer amongst the public. And, throughout the year, we’re committed to supporting people with secondary cancer in a number of vital ways – from this forum and our weekly Live Chat session with our clinical nurse specialists, to the expert patient information, campaigns, videos, publications and courses (including our Living with Secondary Breast Cancer sessions that take place regularly across the country) we provide. Our Helpline and ‘Ask the nurse’ services are also available to those with a secondary breast cancer diagnosis.
We’re a charity with finite resources, so we focus our efforts on our core purpose of support. However, we also undertake campaigning work and see events such as Secondary Breast Cancer Awareness Dayas an important opportunity to raise awareness.
We’re keen to take your feedback on board for next year’s activity and, with that in mind, we’re planning to host a closed
So, if you would like us to do more, change the date, change the name or improve the call to action for our next campaign, please email us on: email@example.com to register your interest.
I’ll be sure to update you as soon as plans for the 13 October are up on our website. Thank you.
I think we may have strayed from the original topic, but the recent posts highlight an important issue!
On http://www.charitycommission.gov.uk/find-charities/ , type Breast Cancer Care (or the name of any UK charity - not sure about Scotland, sorry) and you should see some relevant info.
The big charities like Save The Children, Oxfam and the Red Cross are all very up front about the way their money is used.
I just saw this on another charity site, so yes, it is possible to let people know how money is being used in a simple easy to understand way
Where your money goes
From every £1 you give us we spend 88p to benefit children – 11p to raise the next £1, and the other 1p goes on governance and other costs. Find out more about our finances.
I have been to the London HQ and whilst it is a big building I don't think it is solely used by BCC so it may not be as expensive as we think to rent, it is also used for courses, meetings etc so is well used in addition to office space. Doesn't alter the funding issues and accountability though.
I don't think it's being cynical Vicki. I would be interested to know how big the IT bill is in total for both this and last year. I have lost count of how many changes have been made to the website and this newest version came after the previous 'new' version was written off as not fit for purpose within a couple of months of launching.
Maybe one problem is that if you are told that say 20% of your donation goes to salaries and marketing who wants to think that it is the hard earned money that they have donated that is going to pay for that, because these would be the first things that get paid each year.
BCC's address is 5 - 13 Great Suffolk Street which is near Waterloo station. Do they really need 5 buildings, and in London which is expensive? I guess they would say that it is close to Westminster and they seem to have a close relationship with the Government, but these days with skype and conference calls do you really need to be in London.
I know that the old thing about having to pay over £100k salaries is to make sure they get the right quality of person will be quoted, but it seems to me that management as a whole use this to justify their inflated pay. This is a charity and they are expecting volunteers to do a lot of the fundraising for nothing, or a subsistence allowance.
Why do they need a Portfolio of £12m? People have donated that money to have something done with it, or is the £12m there to make sure the staff and the rents on their properties gets paid from the dividends?
Maybe I'm just too cynical
Sticky Vicky I think you make a good point about what donations are used for, and whether people actually know what they're raising funds for.
Personally, I think that when Charities make appeals for donations in the media, it should be mandatory for them to declare just how much of their total income is spent on the cause/causes they are raising money for, and how much is spent on the Charities running costs. When I donate to a charity I don't just want to be told my money will be spent on general aims (for exampe, increasing support, information, raising standards etc), I want to know exactly what projects are being run to achieve these ends, and how much is spent on each of them.
I know it's possible to obtain information about income and costs from the Charity Commission and the BCC site, but this info doesn't give enough specific detail.
But still, BCC accounts make quite interesting reading.
BCC's objectives are described in quite a general way ( to raise awareness of cancer, support and provide information to cancer patients, and campaign for better standards of service), but it is difficult to ascertain in detail exactly how they are doing to achieve these ends. For example they may be raise funds to improve support, but how is that being spent?. Are the donations going to provide more nurses on the helpline? Answer _ don't know. They also offer opinion to Government departments, and carry out some research. But as far as I'm aware, this is not clinical research to find a cure, but about looking at standards of care etc. This could be quite confusing for someone who want their money to help find a cure.
BCC do own have quite a large property and investment portfolio, and donations for the most recent year declared, showed donations amounting to approximately £12 million. However, they spend quite a bit of this on staff (one senior member earns over £100,000), and millions are spent on organising fund raising.
I don't think BCC are alone in providing inadequate details of it's activities, but that doesn't mean it's OK. There is such a thing as taking lead.
By the way Sticky I'm always happy to share a soap box, but personally prefer action rather than words
One problem with breast cancer is that people with other forms of cancer see all the money that is raised, and all the research that is done, the amount of attention that Breast Cancer gets and they assume that all of this support and funding is equally spread out in the breast cancer community.
Breast Cancer is really the only form of cancer that has this Berlin Wall between Early Stage and Metastatic because the breast cancer message is all about survivorship and barely acknowledges Metastatic. I tried to find out what BCC are doing about Metastatic Breast Cancer Awareness Day and from the outside there is no indication that they are really doing anything, except this Body Awareness campaign.
After all if you are not aware of Metastatic Breast Cancer, then you're not really aware of breast cancer at all.
Hi Vicki, thanks for the link, that was an interesting read. (P.S. shame about the churlish comment under your's I've noticed it happen more often. )
Another blog from Judith Potts in the Telegraph. Which starts
Leading up to 13 October – Breast Cancer Care’s Secondary Breast Cancer Awareness Day – comes the publication of Breast Cancer Campaign’s “Gap Analysis 2013”, which has identified the ten “critical” gaps that exist in current breast cancer research. http://blogs.telegraph.co.uk/news/judithpotts/100239073/breast-cancer-campaigns-gap-analysis-2013-id...
Hummmmmmm. Is that the 'Secondary' Breast Cancer Awareness Day they would only give us the details of on 30 September 2013?
Report Card = F could do MUCH better.
I thought the same as Lemongrove - protest wise - but, it's a Sunday and I realise I will be on holiday and no one will be in the office! I know - 'cancer victim has holiday outrage'! I tweeted the journalist about the Jennifer Saunders' article because there has, allegedly, been some sort of update and it is 'all about the context'. I asked to see the article, as it was in yesterday's paper, and she called me 'rude' (the journo, not JS). I am literally fuming now...revenge will be served chilly.
I also tweeted BCC about their plans for the 13th - they said they would update soon - crikey it's 4th Oct today - what a wash out. It would be nice if someone from BCC came onto this post and truthfully explained the situation. Oh well, ladies our skins - I'm sure - are already pretty thick, we'll just grow an extra layer and keep on keeping on.
You go Girl! Lemongrove on the soap box. I want it back though!!!