No Cancer is Sexy.

So I turned 41 last week.  I vowed I would celebrate every birthday I am fortunate enough to have so I did - with family and friends.  It is hard to believe that a year ago we went and spent the most amazing month in Italy to celebrate my 40th.  

I felt prompted to write today after reading Melg's post about "sexy" cancer.  Totally infuriated at the use of the term to describe cancer but I understand the frustration of the writer of that letter to the editor.  I get frustrated as a ABC girl at how BC is portrayed in the community.  I get angry at the focus on surviorship, survival rates, reconstructions, coping with low libido, cosmetic issues etc... when I am dying.  I would love to be worried about having my magled body reconstructed, I have a low libido anyway, I'm in and out of menopause, my relationship and family struggles each day but I am statistically unlikely to be alive in 12 months. Before any posts about positivity and the tyranny of the median - give me some credit for my own intelligence.  I fully plan to live another 13 years and see my son finish school.  I still haven't finished the photobooks...

I digress, It is not sexy to have any cancer.  I am going to make some assumptions about the writer of the said letter to the editor.  I am going to assume that they have or a loved one has one of the rarer cancers, fighting for funds among the see of pink ribbons, white ribbons, green ribbons...  I feel some affinity with the writer from within that sea of pink - I feel like the focus is on the wrong end of the disease but that is selfish - let's find a cause so we can prevent the disease upfront.  Maybe if we find a cause we can find a cure?  

I am sick of the positive spin on survival rates - Here is a graph from the Australian Institute of Health and Welfare looking at Cancer deaths per 100 000since 1922 - do you see an improvement?  I see a worsening - whether this increase is statistically significant or not I don't know - but there is not a reduction the rate in 80 years of how many people/100 000 of population die from this diease.  So, please stop saying that survival rates are improving.  They are not.  Please stop saying this is a chronic disease.  It is not.  It is a disease that yes, you can live with for some time - Most women (and men) do not.  

I had to search for this information - it is hard to find among the positive spin and pictures of pretty women in pink scarves with glamour makeup - survival rates are better (those living 5 years after diagnosis).  that is great - but we don't know what proportion of those still alive are living with secondary disease because the data isn't collected.  It is all spin to say, yes, the money we raise is working - it quite clearly is not - why play with the statistics to make it seem like it is.  Why mislead those of us with secondary disease that there is some hope?  

I am not denying the advances that have been made but they have had minimal impact on overall mortality rates.  So why, the discrepancy - more diagnoses (maybe a lot of slow growing, never to metastasise cancers being picked up, treated and included in statistics skew the results), maybe there is a real increase in disease and therefore the rates of survival among those diagnoses have improved but overall survival has not changed.  What is happening environmentally to lead to the increase in diagnosis and death?

I had planned a post about surviving another year, how I tried to document with a self portrait - how I couldn't find life in my eyes anymore.  Now, I am angry (guess there is life in me yet) - just like the writer of the letter to that editor.  Look at the Millions that have been raised and still we are dying.  

No cancer is sexy.

A xx