Why start this blog?

The silly season of Breast Cancer Awareness Month is fast approaching us and it will soon enough be October.  The month of all things pink and fluffy and of survivors.  And of various organisations and corporations cashing in on the need for a ‘cure’.  However there is a large percentage of the breast cancer community (about 30%) who will live with this dis-ease until we die.  We don’t need to be made aware of breast cancer because our cancer has spread to other parts of our bodies (metastasized) and we are now considered to be incurable – we live every day with this knowledge.

What do we get from Breast Cancer Awareness Month, bearing in mind that we are 30% of this community?  ONE day, the 13th of October which has begrudgingly been declared to be Metastatic Breast Cancer Awareness Day.  We make up nearly one third of this community and we get ONE of the THIRTY ONE days in October – shouldn’t it be ten days?  What support do we get? … not a lot from outside our number.

You may well say that we could join a breast cancer support group … hmmm … some friends did that, they tried but they were not accepted by the primary breast cancer ‘survivors’ to whom these groups are aimed.  One friend told the other members that she was Stage IV (metastatic / incurable) and no one would speak to her after that.  Not surprisingly she never went again.  A couple of other folks were told up-front that they must NOT say that they were Stage IV, so ended up having to give support to those with Stage 0 – III when they were the ones who were dying of the dis-ease, and one of them has indeed died since then.

October in the breast cancer calendar is about those who will, or think they will, survive.  It is a month when time and again we have pink ribbons thrust in our faces which must have the fixed ‘survivor’ smile because the rest of them don’t want to acknowledge us … and yet they raise millions to research a ‘cure’, they raise millions by using us by reminding the general public that X number of women die of breast cancer each year.  In the United States of America about 40,000 a year die of the disease, and someone worked out that is one person every 15 minutes.  Here in the United Kingdom, in 2010, 11,633 deaths were caused by breast cancer and about 2800 of those deaths were of people under 60 years of age.  Worldwide in 2008 nearly half a million deaths were caused by breast cancer (http://info.cancerresearchuk.org/cancerstats/types/breast/mortality/uk-breast-cancer-mortality-statistics#world). 

Does this sound like a disease that is curable?  Does this imply that a cure has been found?  But this is the image that the pinkness of October seems to put forward. 

  • Raise money on the basis that people die of this disease (men as well as women)
  • But remind people that those who die are usually ‘old’ people (this makes a difference, how exactly?)
  • Give money towards finding a cure
  • Raise awareness of and educate people to know the risks and symptoms of the disease
  • Promote early diagnosis and conventional treatment – surgery, chemotherapy, radiotherapy and hormone treatment
  • Give the impression that anyone who gets the disease will ‘survive’ and be ‘cured’
  • Make only a passing mention of those whose cancer spreads
  • Smile and show off your pink ribbon/T-shirt/socks/undies/bucket of KFC/carcinogenic perfume which has links to a breast cancer charity/any other product that will ‘raise’ money for breast cancer charities (and the product manufacturer) and smile a bit more

So what is there left for us?  Not a lot.  About 1% of money raised for cancer research goes to research into metastatic cancer of any kind, and considering the high profile of breast cancer quite a lot of that 1% goes to metastatic breast cancer.  So do I feel like joining in with Breast Cancer Awareness Month?  Not really.  Not until we are included and embraced by the survivors, not with pity but as equals.  I have lived with MBC since January 2008.  I have had a hip replaced because cancer had caused a pathological fracture of my right hip.  I have been having hormone treatment and i.v. bone strengthening medications all this time.  I had my left hip replaced partly because of the side effects of the cancer treatment, and believe me I am one of the lucky ones!

I, and my fellow metavivors are the face of breast cancer, not the pink, fluffy ‘survivors’ that you normally see.  We live this every minute of every day, and we want this to be recognised by those who control the charities and the research money.  We may have to leave but until you recognise us you can be sure that there will be plenty of others to follow in our footsteps.

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