From Outrage To Action: Dian (CJ) Corneliussen-James and METAvivor

Leave a comment »

Komen campaign for MBC: Commitment?

Komen campaign for MBC: Commitment?.  They care 1.7%!  Great, they contribute $35 million to Metastatic Breast Cancer research, but their budget is $2 BILLION.  They are at last acknowledging the existence of MBC but for me it is more PR than commitment.

Leave a comment »

Are we not entitled to be happy?

Leave a comment »

Give Peace a Chance

Apologies to Lennon & McCartney, because for us this is Give Us a Piece Of a Chance.

Breast cancer dominates disease awareness and fundraising.  From the shock of Betty Ford telling the world that she had breast cancer in the 1970’s, when it was rarely spoken about, it has developed into probably the most public of all cancers.  It gets more publicity and more money than any other cancer. 

Breast cancer is one of the biggest killers of women, certainly in the western world so it is only right that it gets a lot of attention.  I have just been looking at a list of well known breast cancer patients which is bizarrely done by occupation, not sure what that has to do with things, but …

Two things strike me about this list, one is prominence of the diagnosis date, and the age at which they were diagnosed as so many are in their 30’s or 40’s.

This includes a long list of those who are known to have died of metastatic breast cancer, but these are just the well known people that we know of.  Before you start, yes I appreciate that we don’t have a right to know a cause of death, but isn’t this symptomatic of the way that we feel as though we need to hide our diagnosis?

We need a piece of the action, so to speak, so that we don’t have to remain silent.  Betty Ford may have made breast cancer acceptable, but when will MBC become just as acceptable and talked about?  Give Us a Piece Of a Chance is not just about research funding, it is also about being accepted as people LIVING with breast cancer.  I wonder how many on the Alive list have mets?  If there are some it would be great if they would speak up about their experience.  We need to be seen as well as heard.  We need to be accepted just as we are because, for instance, some of us still work for a living and do normal things and this needs to be acknowledged so some of the fear can be taken away.  Without the fear I hope that the ‘survivors’ will feel better able to include us in their celebrations.  Then we can all give peace a chance.


Leave a comment »

So where do we go from here?

Breast cancer is sexy cancer; that is why it is the most high-profile form of cancer.  It is all about the breast and all the cultural connotations that are involved with that – from nurture to porn.  The image is of voluptuous breasts even after treatment but I don’t think that many of us who have had surgery and other treatments would actually recognise this image.  Recent attempts to raise the profile of women with metastatic cancer were actually blocked by facebook because they were considered to be pornographic! Or is it just the thought of a breast mutilated by cancer that is considered to be unacceptable so they decide to call it pornographic because breast cancer is sexy cancer?

As this disease has so much attention it is particularly sad that so many still get the disease, despite the millions spent on educating people about the symptoms and how to avoid it, but for me it is even more disappointing that so little has been done to help those with metastatic breast cancer.  We are the ones who will die from it, yet so little seems to have been achieved when it comes to treatment options in ratio to the sums raised.

I can only imagine the frustration of those with low-profile cancers and the way they must feel at the coverage and interest, to say nothing of the funds, available to breast cancer charities and research.  But at the cutting edge (in more ways than one) I for one don’t feel as though there is really much action being taken by those who have the knowledge and power to help us.  In many ways I have begun to feel that charities are more about image and job creation within the charity sector than they are about the reason for the charity existing in the first place.  Why does a charity have to spend, say, 22% on admin?  Especially when a lot of those doing this work are volunteers.  When did charity stop being about vocation and start to be about exploitation of a vulnerable group?  When did it all become about branding, and re-branding, image and style.  Cancer is not a brand; it is not an image; and personally I fail to find anything stylish about having it.

It is the same with research.  It now seems to be about advancing careers, patents and profits.  Medicine now seems to be about advancing careers, profits and narrow mindedly sticking to the conventional treatments sponsored by those making a profit from other people’s ill health.  Where is the compassion?  Where is the open mindedness and independence of thought than were behind so many of the great scientific advancements?  While research seems to be suggesting that cancer, and breast cancer in particular, is a very multi-faceted disease which does not have just one cause or trigger, but needs several causes to come together in a ‘perfect storm’ to allow the bad cells to start to form tumours.  Research seems to accept that diet and lifestyle and the lack of certain nutrients and minerals are a part of the storm and yet this seems to be ignored as a way of treating it because there are no patents on fruits and vegetables, nutrients and minerals unless they can be synthesised and patented to create a profit.

It all gives new meaning to Your Money Or Your Life…

Leave a comment »

Hello world!

Welcome to! This is your very first post. Click the Edit link to modify or delete it, or start a new post. If you like, use this post to tell readers why you started this blog and what you plan to do with it.

Happy blogging!

Comments (1) »