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Hear My Voice, Please

*co-written with Susan Rahn.

Advocacy /noun/: The act or process of supporting a cause or proposal.

Who would have thought that a deadly disease would be controversial and have a need for advocates?

Recently, Living Beyond Breast Cancer selected Susan Rahn and April Doyle from the Underbelly team as Hear My Voice advocates. LBBC is a wonderful organization that provides much needed information to those living with breast cancer, past or present.  In order to fully support this endeavor, we attended a training in conjunction with the LBBC conference held in Memphis October 6-8, 2017. LBBC did a fantastic job of integrating all of the selectees for this program, making us feel a part of the organization from the first moment.  The principles and responsibility this organization represent are a much-needed outlet for high quality, accurate, and plainspoken information to help patients enduring the breast cancer process.

What was most surprising were the differing perspectives of the attendees and even some of the Hear My Voice participants. Metastatic breast cancer did not appear to be addressed with the severity the breast cancer community has come to expect.  Whether it be the demographic of the area, the generational gaps (there was a surprising lack of younger patients), or even the delivery of the information, the common feeling of the conference was that of pretty, pink ribbons.  More than once, it was nauseatingly repeated, “Cancer is a gift”.

Come again?!?

If cancer is a gift, where the hell do we return it?

Susan personally felt a complete lack of urgency whenever MBC was part of the conversation. One patient speaker didn’t even refer to herself as Metastatic and instead called herself a 4-time Survivor. Come again?? While we understand anyone’s pause to celebrate their time with being No Evidence of Disease (us included), we think we can all agree that we are fooling ourselves by trying to call ourselves ‘survivors’ each time we reach NED. Aren’t we SURVIVING with every day we get through? And what about those that never reach NED? Are they losers? Hardly.

One speaker declared to the room that “cancer was the best thing to ever happen to her life”. We do not know what kind of life the speaker had been living, but if cancer is the best thing, we need to help that woman immediately.  The disappointing truth was that it was obvious she really believed that statement.  Eyebrows raised ceiling high, the room chanted “amen” and “yes, girl”.  As a 39-year-old woman living with metastatic breast cancer, April almost cried with despair.

“I do believe that having cancer does not automatically mean your life is over and there are no good times to be had,” April states. “I also believe that living with a terminal illness also gives one a unique perspective on the preciousness of life’s gentle moments.”  However, cancer is not a gift.  It is not the best thing to happen to anyone’s life.  It is heartbreaking, awful, painful, deceitful, cruel, and quite probably the worst thing anyone will ever endure.  You know what else?  It is okay to admit that!  No one will take away your pink ribbon trophy or declare you unworthy of the pink ‘survivor’ sash that drapes your body.

Susan had previously attended LBBC’s Metastatic Breast Cancer Conference in Philly, and this conference held in Memphis most definitely had a much different vibe.  The conference was geared to ALL patients and the Hear My Voice training was all Metastatic patients.  In conversation, it was actually shocking at the number of attendees who had never heard of organizations such as Metavivor or even the MBC Project.  And these were stage IV participants.

During the Hear My Voice training, some of the older participants stated that as advocates, we needed to “make metastatic breast cancer as sexy as early stage cancer”. We almost fell from our seats at that statement and the cheering that followed.

What, exactly, is sexy about breast cancer?  Early or late stage?

We are waiting…

Everyone was so consumed with trying to keep up with the positive narrative in their story in order to make everyone else feel good, that the perspective was lost when it came to the harsh reality that we are still dying at the same rate that we were 30 years ago. Why are we in a room filled with people with Breast Cancer and still not talking about how we have to change the conversation? We can do both, we HAVE to do BOTH.

Two awards were given to past participants of the Hear My Voice Training. One of those participants was Beth Caldwell. Beth was unable to be there in person to accept the award because of her rapidly declining health. Those of us that know Beth were painfully aware of that fact. Most of the room was not.

Is it impossible to change the narrative?

Thankfully, that is not the message that Living Beyond Breast Cancer wants to promote. The realities of breast cancer are not to be ignored, nor is the fact that positivity can still abound in this situation.  In fact, the positivity should be emphasized despite the situation.  That is what we take away from this training.   LBBC provided us with the foundation and the tools needed to spread real awareness by using our own truths while providing other patients with a direction to go for more information.  Factual information.

It was obvious from the conference that we still need awareness programs that provide the truth about this disease. Not the sexy gift that has been sold to us for decades.  We need to start with each other and educate our own breast cancer community about the realities of this disease.

We are hopeful that with all the training that LBBC provided, all of us who participated can use our own stories along with the factual information provided by LBBC to help educate those that need to understand and can help make a difference. Our personal stories are the most powerful and most impactful. Anyone can read statistics and percentages but when they are peppered into a personal story of someone living with Metastatic Breast Cancer it can be the most powerful tool we have.

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  • April Doyle is a MBC patient with a big mouth and passion for writing. Originally diagnosed with early stage breast cancer in 2009, she has been living with stage IV metastasis since 2014. A single mom, April continues to work full time when not running after her six year old son. She has a BA in English Literature from CSU Fresno and can generally be found with her nose in a book, listening to the repetitive shouts of mom, mom, mom.

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