Why are they so scared?

I have been called a Troll for some of the opinions I have expressed.  I am not invading other sites, and basically if you choose to read this then you should accept that this is my opinion.  Apologies if others don’t like what they see as my attacks on the Pinkness of the breast cancer community but if the Pink Fluffy Breast Cancer Survivors Community did more to accept those of us with metastatic disease there would be no need for such ‘attacks’.  The real question is why are they so scared of us?  I believe that it is fear that makes the Pink Ones shun us because, yes, I do feel shunned by them.  If they embraced us as a part of the whole, and we do make up 30% + of that whole, then I would not feel as though I should not mention that I am Stage IV, people I know would not be told that they can’t mention they have mets when they go to a breast cancer ‘support’ group; someone would not experience others in a ‘support’ group not talking to them once they said that they were Stage IV.  Don’t shun us, we are LIVING people.

There seems to be a denial that we all will die, one day.  Someone once said that life is the world’s worst sexually transmitted disease, because it is 100% fatal.  So why not accept it?  Why be so obsessed with ‘eternal youth’?  Why not admit that nearly half a million people die each year, worldwide, of breast cancer?  Why not accept that metastatic breast cancer exists and that maybe something could actually be learned from us?  It is like having a contageous disease which can be caught just by looking at us, let alone touching us and so the Pink Ones seem to feel that if they ignore us they can’t become one of us.  I suppose even the reference to Pink Ones can be seen as detrimental in some way but I do not feel like a survivor in their eyes … and yet I live with this pink disease, and I will until the day I die.  Only then could they say I was cured because I believe the actually definition of being cured of cancer is that you die of something else.

So why are they so scared?  After all most people live for some time after a metastatic diagnosis.  It is NOT an instant death sentence but I suppose if I look at my own experience immediately after being diagnosed I did think that it meant pain and inevitable decline because there was no indication that I could have any regression, as well as progression.  It was only through my own experience and determination that I began to feel that I did have a life ahead of me and that it could be a life with meaning, peace, contentment and purpose.  Sadly none of this was given to me by the medical profession or the BC charities which inevitably have metastatic breast cancer just before their piece about end of life and palliative care.  For this life with meaning, peace, contentment and purpose I had to find my own way and that this can be the case is not what is shown to the Pink Ones, and this is a big part of the reason that they fear us so.

In truth that life has had a great deal to do with bloody-minded stubborness.  The oncologist gave me no sense of HOPE, which I think is the cruelest part of getting the diagnosis.  There was no indication that there were measures I could take to help myself, to boost my body’s ability to deal with the cancer it will probably always contain; there was no sense that I had some power over the cancer, or that I could at the very least put it in its place as just being a part of my life rather, than being the whole of my life and inevitable death.  It was not even recommended that I had chemotherapy, which at the time I thought was a sign that they thought I wasn’t worth the ‘investment’ of resources, because he didn’t explain the reason I was not put straight on chemo.

This actually just made me more determined that I was not going to give up and die.  It actually made me delve into all the resources that a friend had been sent five years before when she had terminal cancer.  It was possibly also then that I realised that she had relied on science and conventional medicine totally, to the point where I don’t believe she could even have consider anything ‘alternative’.  After all we became friends to do a course to get to university as mature students (I was the oldest student in my cohort) and she went on to study pharmacy, her world was scientific medicine.  However it was that very scientific medicine that I have come to believe actually shortened her life.  The excessive use of pain killers and opioids, and the palliative chemotherapy that should have prolonged her life but instead nearly killed her as her body started to shut down in response to it.  I was there when that happened and called the doctor who eventually agreed that she was having problems and told me to take her straight to A&E (Accident and Emergency department) and during her time on an assessment ward she nearly stopped breathing all together.  I still wonder if I really did the right thing by getting intervention because maybe it would have been better if she had slipped away then.

My chosen path is more integrated.  I have even turned down the opportunity to go on to chemo with Herceptin which was offered after getting a second opinion at the Royal Marsden Hospital in London.  The reason for this was that after changing my diet and starting to take supplements my health improved, and by then I just didn’t want to upset the applecart with something as drastic as Taxol and Herceptin.  I will keep them in my arsenal to use another day, but four years later that day has not yet arrived.

When the Pink Ones accept us I can then feel as though I too am a part of their Pink World.  I survive too, though I cannot expect to be a ‘survivor’ like them.  I celebrate that with them; after all my own mother had breast cancer which was treated early and she died 15 years later of something completely unrelated.  If doctors had taken notice of test results 5 years before my diagnosis I might have been able to be the same.  I do not deny them one second of the joy of being disease free and I earnestly hope they remain so; but maybe if they accepted and acknowledged that 30% or more of them will become us, if they weren’t diagnosed as Stage IV in the first place, maybe they would seen that we have a life worth living and that would take away some of the fear, stress and worry, and that by knowing that we are here they will feel more able to fully embrace their own survivorship and include us in their celebration of life.  After all it is only by fully embracing this moment that we can truly experience the wonder and contentment of being alive.


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