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Why I Have a Mixed Relationship With Cancer Awareness Campaigns

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You don’t need to have cancer to sense that cancer awareness days, weeks or months can be complex, helpful, annoying, divisive and frightening for some people. I believe they can throw us off balance.

Having been diagnosed and treated for breast cancer twice, I have a mixed relationship with cancer and especially breast cancer awareness campaigns. Apart from my personal experiences, I have chosen to work in the field therapeutically and I write a lot about coping with the emotional impact of a life-changing illness. For some years now I have also been a media volunteer for a major U.K.-based cancer charity. While I am actively engaged in the field, I also have to monitor what effect the exposure to cancer stories and messages can have on my own emotional and physical well-being. You may also be aware of raised emotions like anxiety, grief, anger, low mood and feeling depressed. Public cancer awareness events can also be a difficult time. Memories, current health realities, campaign misrepresentations, commercialization of the cause and disagreements among people affected by cancer are also things I feel can be difficult to follow. I know I am not the only one for whom cancer has become a daily reality. I continue to work hard at accepting this fact as rationally as I can. That does not mean I am a victim or have given in. To what? Cancer is a fact. You may have other health issues, which are also a fact. I think we need to learn to live with it in a way that we can make the most of the lives we have.

Cancer has become part of who I am. It has shaped me, but it does not define me.

Regards my specific cancer, for me breast cancer is not just about breasts. On balance, I have always tended to think that I have been treated for cancer… first. Especially since breast cancer is not just limited to that part of our anatomy. I am highly attuned to symptoms of recurrence elsewhere like bones, brain and liver.

For me, breast cancer is also not about pink. I appreciate that upbeat, motivating and cheerful messaging will get a better response to awareness and fundraising events. But it just does not sit comfortably with me. The reality of breast cancer and any cancer for that matter is stark and brutal.

Breast cancer like any other type of cancer is complex. The incidence among women is high. And men get breast cancer, too. Depending on where you live in the world, survival rates up to and beyond five years are comparatively high. But as we know, this is not to say the cancer will not return and become terminal.

Cancer is a waiting game. The word “never” does not exist.

I once spoke to someone high up in U.K. bowel cancer campaigning and was told that at least with breast cancer the survival rates are high and no need for me to be worried. I knew they meant well. And I know statistically speaking, they have a point. But I also know too many who have died of breast cancer. And I also know what it’s like when it comes back.

There are social media groups and campaigns which challenge what is described as sugar-coating the truth of breast cancer by sharing less known or talked about realities of being treated for, living with and dying from the illness.

Questions are asked, like:

  • What kind of research is the fundraising used for (prevention, primary, secondary, metastatic or stage 4 treatment or cure)?
  • What are the health ethics of campaigning companies and organization during the rest of the year?
  • Is the language and imagery a reflection of the cancer reality or at best an innocent glossing over of difficult facts or at worst an irresponsible headline-grabbing attempt in the name of corporate social responsibility?

Cancer impacts our bodies, minds, hearts, souls as well as our pockets. While every aspect of our life is thrown into crisis, treatment and care rarely integrate our mental health needs.

Anxiety, depression, loneliness, relationships problems, anger, guilt, loss, bereavement, religious and spiritual void are just some of the issues we will be dealing with if we are affected by cancer (including relatives and friends).

And let’s not forget that charities for other and rarer types of cancers, or those with lower survival rates may not achieve the same levels of awareness, fundraising and participation levels as Breast Cancer Awareness does, a lot of the worries, questions and concerns apply across the board.

While “my” cancer may not be “your” cancer, ultimately we all are in the same boat of uncertainty where death from cancer is real. Neither does cancer end after treatment. I do not want to compete for attention, concern, investment in treatment or cure.

In the world of cancer, language matters. And words may not have universal but personal meanings. I do not see myself as fighting or bravely battling. My body developed an illness called cancer. For me, battling that would mean fighting my body, which I cannot and will not.

Neither will I demonize the disease, which would make me feel even more helpless and lacking control.

Hearing others’ stories, I constantly wonder whether I have and continue to make the best choices for my treatment and life with cancer.

Ultimately, we need to find the right measure of engagement with our own reality, our story, our wound, whatever that may be.

For my cancer reality, this means taking special care at a time when the messages can be overwhelming in volume and tone and lead to even more fear and other difficult feelings.

 

This story originally appeared on karinsieger.com.

Image courtesy of Bru-nO

Originally published: October 26, 2018
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