Guest Post

Today’s guest post is written by Coco. 

A treatise against a mandatory sunny disposition for all breast cancer survivors.

I always knew breast cancer would appear in my life. After nearly 12 years of bi-ennial mammograms, a lesion was detected in 2010. I was not surprised, nor shocked. I had no “why me’s” . No tears then or now. It was  – it’s arrived, as expected, they’ve found it – now, get it out.

My 6mm tumour was invasive. My only “what if” related to why I accepted bi-ennial mammograms as diagnostically reliable, when I now know with my dense breasts, they are less than 60% valid. I should have been having annual digital mammograms and with my dense breasts, a dual coil MRI as well. Many US states now require by law that mammographic operators advise women not only about their breast density score, but also what that means in terms of screening unreliability. In Australia there are no such laws as yet. Something I aim to change.

My post surgery surveillance now includes a dual coil breast MRI once a year, which costs me $690 in Australia. I also have a digital mammogram annually which, despite heavy duty pain medication, leaves me in pain for weeks afterwards, and an appointment with highly experienced breast surgeon specialist for a physical examination as well as to discuss tests results.

I needed to resume my pre-surgery exercise regime. There is plenty of evidence post surgery exercise is important in reducing recurrences and I knew how strong it made me feel. Unfortunately I had three months off while receiving physiotherapy to my arm, back and shoulder damaged during the lymph node extraction. I lost my normal exercise routine.

I saw an advertisement in the local paper for an exercise program designed specially for women after breast cancer. After researching it and finding it had solid credentials, I booked in. The exercise aspect turned out to be very good. This constituted half the program. The other half was a mix of guest speakers and for want of a better descriptor, group sharing. At the first group meeting the two women running the program announced we needed “ground rules” for the sessions. Respecting other’s confidences was relevant. As was who would tidy the room each week. I accepted that.

However when the phrase “positive attitudes only” appeared on the white board as a ground rule,  I baulked.

We were a room of 15 adult women who had already lived full lives. We had been through a lot. Some were more affected than others. All wanted to share our individual truths with each other. Sharing means potentially all aspects – not just the sunny side of breast cancer, but the dark stuff as well. Yet the organisers wanted to ban any content from the grittier side of our emotional ledger. It felt like another bit was being chopped off me. I could not obey this rule, so I opted out of the group support, despite needing it.

How many of us are either being driven away from breast cancer support services by this threshold requirement of enforced positivity? Or sit, unable to share our truths in the one place where we should be able to?

A second incident involved a friend with breast cancer, who was house bound due to severe post surgical fatigue. She joined a national online breast cancer forum for support. After making a number of posts which I found insightful, and stimulating discussion, she received a private email from the site Administrator, admonishing her for being negative in her views, claiming she could be upsetting women with breast cancer who had little children [my friend was one of them by the way - she had a 10 year old] and asking her to only post positive comments.

My friend cut and pasted this email from the forum Administrators on to the public forum site and said she felt she was being emotionally blackmailed. The Administrator then deleted all her messages and blocked her from making further posts. I carefully examined everything my friend had said. There was nothing offensive – it was raw, but patently honest. Since when did being honest about one’s experience with breast cancer morph into being categorised as abuse justifying censorship, I wondered?

When did this sunny, Pollyanna-ish attitude towards our breast cancer become mandatory?

Was it the Oprah effect, where only those who present their hardships in positive terms get the pat on the back and the prize? Was it the Louise Hay new Age type thinking that we get the diseases we deserve or need? Was it the pink fluffy breast cancer campaigns where our disease was being homogenised, and prettified in candy pink, airbrushing away the ugly bits? At what point did this evolve into something sinister, such as if you fail to have a positive attitude, your breast cancer is more likely to return or you must not express dark thoughts lest it result in other survivors relapsing? Do we say this to children with cancer? Men with prostate cancer? Where do these breast cancer Hall Monitors policing how other women describe their experiences come from? Why do they have no commitment to women with breast cancer enjoying free speech and sharing their full range of experiences?

Stories about breast cancer making us a better people are now so ubiquitous that I start to wonder if it’s so great, how come we don’t have volunteers lining up for it? Optimism about a horrible and sometimes deadly disease initially was about empowering us and making us feel more hopeful. I get it.  It has now evolved into an emotional straight jacket. Disease may indeed make some people nobler, but I suggest not all, and certainly not the majority. Disease apartheid for breast cancer survivors needs to stop. Access to support on the proviso you mouth the fashionable platitudes you do not feel is wrong.

Some people can experience breast cancer in a transformative , triumphal or even spiritually uplifting manner but sadly, this has become the socially approved response. Just like the white board rule or my friends banning. I refuse to feel the way you say I should.

Breast cancer has not made me a better person. It has not transformed my life for the better. I have not gotten some insight into a level of spirituality I was hitherto ignorant of. I have not learned to appreciate the little things. I am definitely not grateful for having it. I refuse to love my disease. I value hearing the full spectrum of breast cancer truths.