Escape from Captivity through Knowledge and Validation

It’s been awhile since I last wrote what was to be the final installment about my experience with breast cancer.

Thinking back, it was with mixed feelings and foreboding, that I wrote those articles. I worried about posting my experience and lost a lot of sleep wondering what would people think. How would my family and friends respond to such personal details? Did I sound like I was whining? Was anyone else struggling with me and feeling they too were trapped in a cancer cocoon?

In the end, the many positive, insightful comments, e-mails and conversations I have had with people I know and with people I don’t know confirmed to me that posting my story was the right decision.

New found knowledge

Those insights have compelled me to share their responses, giving my newly found knowledge and understanding a voice.

Many of the responses were appreciative of the diagnostic and treatment information. As one breast cancer survivor said, “There is no one to hold your hand or walk you through cancer. No one tells you what to expect.”

Of course, my mother felt that because the articles were so good, LOL, so informative that the articles should be printed and made available in doctors’ offices for other breast cancer patients to help them better understand what was ahead.

In spite of all the Relays for Life, public awareness and fund raising campaigns, no respondent, other than other cancer patients, spoke or gave me advice as if they knew all about it.

No one pretended to understand because they really didn’t know much about the emotional and physical aspects of breast cancer. Neither did I.

People were grateful for the small snapshot of information the articles provided.

Never knowing what to say

My husband, Bill thinks that there is an underlying, ingrained belief that there is no cure or good prognosis for cancer. This belief makes it more difficult for people to talk about, never mind ask a cancer patient about cancer.

He said that people are uncomfortable and simply don’t know what to say or ask. They would rather say nothing than to say something potentially insensitive, upsetting or offensive.

In spite of being a nurse, my honesty in the columns truly surprised my mother!  

Back in the 1950s when her brother was dying, a friend visited and subsequently asked, “Is it cancer?” Shocked, my mother, her mother and her sisters simply looked at each other. Back then no one said the “C” word.

Times have changed; treatments are more advanced. Outcomes are more positive. However, in my experience, people are still not talking openly about cancer.  

A former student of mine thanked me for my columns. He told me that his mother died while he was in elementary school in the 1970s. He knew only that she had breast cancer. No one talked about it.

“Your articles helped me feel closer to my mother, knowing now what she must have felt and the difficult treatments she had to go through, I never knew.”

Teaching colleagues, friends and family said over and over that they had no idea what was involved. Neither did I.

They knew the lumpectomy was a fairly minor surgery and radiation was uncomfortable. They had no idea how estrogen inhibitor medications can wreak havoc on your system or how difficult the side effects are to manage.

Take all the time you need

A friend was diagnosed with a different type of cancer at the same time as I was diagnosed with mine. She said that my columns helped her knowing that others have had similar struggles.

She confided that although she has resumed most of her daily routines, a year later, she is yet unable to talk about her experience.

My primary physician told me that I (my friend and many others, too) went through a “life-altering event” and it could take me two to three more years before I felt myself again.

That was shocking, but what he really wanted me to know was I had his permission to allow myself to take whatever time I needed. There can be no set time of recovery. There is no set time to be comfortable enough to talk about your cancer.

People told me how brave I was sharing this personal experience. I’m not sure that is true.

Brave, maybe; Inspired, definitely

I am inspired by a former Attleboro resident who told me that she went through a much more horrific breast cancer than mine, totally alone. Alone she endured a mastectomy, chemotherapy and radiation. She was brave, for sure!

Many breast cancer survivors said that up until reading my columns, no one truly understood their journeys. My diagnostic experiences they said mirrored theirs. They cried, were emotional and couldn’t get a grip on what was happening to them, too.

Even years after their cancers they were appreciative that someone was sharing and supportive of their feelings in a very public way.

There are breast cancer “help” phone lines, but when you don’t know what to ask or what to say, these lines may seem impersonal and although helpful for many, may not be helpful for everyone.

I heard many wrenching breast cancer journeys that were lost, told by grieving sisters corroborating the critical need for more cancer research.

Mothers of daughters, who survive breast cancer and those who unfortunately do not, surely must have responded as my mother did when she read the articles: “I cried. There are no words that were strong enough to express my feelings so I cried. I still cry when I reread them. It should have been me and not you.”

Finally, Dr. Jay Harness, on his website, cites my feelings as supporting his objective in treating breast cancer patients: “Dr. Harness and his team of doctors recognize the need for emotional reconstruction by nearly every breast cancer patient, as important as any surgical, radiation or chemotherapy treatment a woman may receive.”

I told my mother time and time again that I was doing just fine. She kept disagreeing. I guess she was right. I was struggling with emotional reconstruction. Is it over for me? Am I out of the cancer cocoon? No, but with the columns and subsequent Patch respondents’ knowledge and validation, I am stronger.