The aim of this blog

I started this blog with the hope that it would do ‘what it says on the tin’, as the advert goes.  It is to inspire metastatic breast cancer advocacy.  The intent is not to cause divisions or offend anyone, and if you are offended I can only think that it would be because you cannot empathise with those of us with mets.

Personally I am offended and hurt by the concept that there is nothing between being a ‘survivor’ and ‘s/he lost her/his battle with breast cancer’.  Go on just say it – s/he died because there is no cure for breast cancer, because no one wants to include us in the overall picture of what having breast cancer is actually like.

Let me make this clear

  • I am not invisible (at this size, are you kidding?)
  • I have a life that is still worth living
  • I want to be included in a celebration of life with breast cancer
  • I want to feel as though others will not turn their back on me when they know I am Stage IV

Almost exactly 8 years ago one of my best friends died of stomach cancer (liver mets) and I stayed with her until the end.  While she was in the hospice in a coma I played her favourite music to her, and read her stories I knew she would like.  She died only when her heart stopped and her brain ceased to function and yet so many friends and family had already abandoned her and made her feel alone and forgotten.  Why are we so scared of embracing that part of a life which is drawing to a close?  We ain’t dead yet, and hopefully we will have years ahead of us; so why treat us as though we have crossed a line into oblivion?

While we may have crossed a line into another part of our lives it is still about life.  Although we may not be able to turn back you too can cross the line with us, and return to your own life.  We will not pull you under, and infact you might find that we will enrich your life beyond words.  Personally I have come to embrace my diagnosis and reluctantly accept that cancer will always be my companion.  However by embracing it I also take power away from it by relegating it from the First Division of the most important things in my life.

The aim of Inspiring Metastatic Breast Cancer Advocacy is to be given equality within the breast cancer community, that is all.  I am not asking for any more than that.  If 30% of those who have been diagnosed with BC become, or are diagnosed at, Stage IV (Metastatic) why are we not getting 30% of Pink October?  Why are we only allowed 1 of the 31 days of October to be recognised?  Why are we not getting 30% of the research money?  Why are we constantly edited out of the picture.  We don’t need breast cancer awareness, we have it.  We don’t need to be told the symptoms, too late.  We don’t need to be told to get a mammogram, because we have other scans that can tell us much more.

In the UK breast cancer screening starts when you are 50, though you may not be called for a mammogram until you are 53, depending on the screening process which rotates every three years.  I had a letter when I was 50 asking me to go for a mammogram and I had to phone up the NHS and say it was a bit late as I was diagnosed with metastatic breast cancer when I was 47.  The woman sounded flustered and apologised that the letter had gone out.  Whilst statistically most people who are diagnosed with breast cancer are over 60 the disease itself doesn’t know this and does not apply such age discrimination.  Sadly the number of cases of breast cancer in younger people are increasing.  No one would listen when I said that when I had a hysterectomy when I was 42, tests showed that I might have cancer (the marker is also a marker for breast cancer), and also that my mother had breast cancer when she was about 53.  The impression that I got was that I was overweight, had depression and I was too young for them to bother to do any investigations.  Although I was initially told I was Stage II I knew that they were wrong.  Again if they had listened they would have discovered at the time that I was walking around on a pathological fracture of my right hip caused by a 4″ x 2″ metastatic tumour.  Cancer does not discriminate on the grounds of age, gender, race, religion, sexuality or wealth (or lack thereof), or any of the other categories that society wants to push us in to.  At first I was part of the ‘survivors’, but then I crossed that line.

We want to be included … is that really too much to ask?  We are LIVING with breast cancer, rather than dying of it, so embrace our life as happily as you embrace the ‘survivors’.


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