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
Comments
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Totally agree, Amanda - and glad to see that fighting spirit!
Best wishes.... Pam
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Amanda
I'm so very sorry if my post has caused you any pain. That was certainly not my intention. I was very pissed off and offended by the comments of the writer for myself and my pink sisters.
I mentioned to my oncologist today the letter in the paper and she said I can understand why you are offended... There is no good cancer to have
She agreed that more $$ needed to be spent in research of all cancers .
I was diagnosed in October 2011 and I remember walking through the shopping centres, waiting at doctors appointments, reading magazines etc.. I was trying to get my head around the idea I had cancer and everywhere I looked there were bloody pink ribbons and I couldn't escape it.
Only the other day I was discussing with friends my idea for a small tattoo I am planning. They all immediately suggested a pink ribbon. I said I didn't want a pink ribbon to define me for the rest of my life.
I can only imagine how angry you must be feeling as you face the continuing battle that is ABC.
I know how pissed off and angry I was a few weeks ago to find out that I had joined the ABC less than a year after finishing treatment. I felt so ripped off. The anger has diminished a little as I get ready for the treatment and scans that will now be with me for the rest of my life.
My oncologist was not able to give me the black/ white answers I had hoped for today. I will have more tests and add another specialist to my list as I begin the fight for my life once again.
Sorry again if my post has caused you any pain
Mel xxx
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Mel - your post didn't cause me any pain. It's just the cancer world and the rubbish that is in the media full stop. Your post was acatalyst for me to write some of what is inside. I don't often get angry and the fact I have is a good thing - it is at least shows some life. My dear friend once asked me - "where is your anger?" well maybe it's showing it's face now because I am not ready to go.
I guess I totally get where the author is coming from, the anger at the lack of progress the billions raised and spent, the drug companies profiting but such a large number of patients still dying. We are about to hit pink october again soon, my mailbox is already full of requests for me to fundraise, which I have supported wholeheartedly in the past but I feel it is all for nothing. How on earth are there going to be no deaths from BC by 2030 if they haven't managed to reduced the death rate in nearly 100 years! I am angry. I am angry that I am going to die young and my children are going to grow up motherless and fearful of cancer in their life. I am angry that women like you are back on the rollercoaster again after putting yourself through rigorous treatment. I am angry that I have been to too many funerals to count this year.
The pink ribbon doesn't define me. I used to love pink prior to getting BC. Now I hate it with a passion. It is a sign of everything that is awful about life with breast cancer. For me I believe in rainbows - new beginnings after the rain. I wrap my children in a rainbow each night. I tell them they can always send me rainbows, they connect us - anywhere, antime, forever. I will send them rainbows too - after rain, in littel prisms of light - I'll always be there, watching, guiding just not in the way they know now.
So please don't feel your post upset me - it just got me going. I'm sorry but get used to the no black and white answers and prepare yourself for a world full of grey. "we don't know or we don't understand" are the most common phrases that come out of my oncologist's mouth.
I wish you the best in our renewed fight. There is much hope and there are wonderful stories of survival. I still hope to be one of them.
Much love,
Amanda x
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Thank you Melinda and Amanda for sharing your heart felt thoughts and feelings with us as I believe it is very important for us ALL to understand where you are coming from and what you are going through. I am not one to shy away from the truth and I believe it is important for us all to be prepared for the worst and if that worst never happens then the rest is all a bonus.
Luv to you guys, Mich xooxox
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Oh shit - too heavy, too heavy. Then thank God that we can air ourselves this way. I have really been feeling "off" of late and have become very envious of healthy people. Then on the other side at least I know what I am dealing with??? I just try and find and do the things that bring me peace. I avoid anyone or anything that gives me grief - that's how I "survive". I am struggling at the moment. XLeonie
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