The meaning of Survivorship...

Survivor. The word itself seems almost simple in its form. Three syllables, eight letters. It's a short word that has a million meanings – millions of cancer survivors feel and live their survivorship uniquely. No one direction each of us takes is wrong or right, but we each try to make the next day better than the last. We aim to eek meaning out of this simple word.

To me, being a survivor is not about beating the bastard that cancer is. It's about what I do with my second chance at life, how I pay forward all the good that has befallen me – despite a brief dark period in my life.

I came by need for control naturally. I stem from a long line of strong and independent women, and I was encouraged to emulate them and forge my own path from a young age. Circumstances dictated that I make decisions for myself – sometimes unwillingly – from the time I was 16.  For 25 years my life has been about control.

 Christmas just after my surgery

Christmas just after my surgery

So, five years ago, when I found a small lump in my breast my controlled world came crashing down around me.

I remember it clearly. It was a Wednesday and my birthday, and I had been at the London Breast Center for most of the afternoon getting the lump scanned and biopsied. I was sitting in the waiting room counting the minutes to getting the results.  

I had been self-examining my breasts for years, even had a small scare once.  But even then I hadn’t felt that sense of dread I was feeling sitting there, waiting. The minutes ticked away interminably. I knew, no matter how often the doctors told me it “probably isn’t anything sinister”, I knew that it probably was.

I needed to talk to someone who “got” me – my sister, Guida. She answered the phone with a simple "How are you?" and for the first time I didn't answer with my usual "Fine". My voice caught in my throat and I replied, "I don't know." She said quietly and firmly, "Sit tight. I'm on my way." You see, that’s the thing about people who know you better than you know yourself – you rarely need to explain. They just know what you need.

As I sat in front of my breast surgeon listening to him relay in stoic tones that the small pea-sized lump in my left breast was, in fact, breast cancer, my sister walked into the consultation room, saw my face with tears streaking down it, my hands shaking. She sat down, grabbed my hand as my world began crumbling around me. Ever the pragmatist, she asked all the questions I couldn't, and helped me understand what I was hearing, but not really absorbing.

Then she walked me out of the clinic and steered me to the nearest wine bar. Inside she ordered me a very, very large glass of red wine. Yes, people, sometimes wine does help even for a short time! And then we sat down and worked out how to help me regain control once again.

There I was, on my 35th birthday, with Stage I breast cancer, grade three, and fairly aggressive. Happy fucking birthday to me!

But, I was told, it wasn't the end of the world. It was, in fact, amazing that I had found it. The position and location of the lump was so complex that the surgeon was surprised I found it on my own. Apparently, I saved my own life.

Ten days later I had a lumpectomy and one lymph node removed. The surgeon did a great job. He removed the lump and cleared all margins, meaning the rims of the tissue removed were clear of cancer cells. The lymph node tests came back negative. Technically, my oncologist told me, I was cured. But, hold your horses!  My cancer was ER (estrogen) positive, PR (progesterone) positive and HER2 (Human epidermal growth factor 2) positive (thanks to a friend and colleague who explained it to me - I may do this in a later post).  So, even though I caught it early, got rid of it quickly, the ER/PR/HER2 positive results also meant that I needed preventative treatment. Because the fucker could come back.

My treatment plan was eight cycles of chemotherapy, six weeks of daily radiotherapy, Herceptin infusions for a year, and Tamoxifen (pills) for five years. Five. Years.  Anyone who knows me can understand my reaction to this treatment plan. It was one thing for medical professionals to tell me what the next five years were looking like for me. It was another for me to simply sit back and "take" it. This was not about fighting anymore. It was about influencing the quality of my life for the next fifty years.

I was taking control back. That fucker, cancer, had taken enough already. 

I womanned (if it isn’t a word, it should be) up and decided that even though there would be challenges ahead from the treatment, everything and anything I could do to make my own decisions I would. These are the five things I did to gain control of my future.

Control One: Telling others about the cancer. I decided to be open about my diagnosis. If my ability to beat this was something to shout about then I wasn’t going to hide it. I needed to inspire others who were fighting to be strong.  I didn’t have children of my own to protect, or a husband or life partner that needed to be a part of that decision. So I did it.

I told my mother, a breast cancer fighter, that her baby had the same disease she had. With my sisters and brother-in-law we sat around her and I relayed the news very matter-of-factly. Then we moved on, set the table for lunch, and ate a meal as a family, talking about everything else except cancer.

Control Two: Working after surgery and during chemotherapy. Even though the surgeon wanted me off work for two weeks after the surgery, I went back after one. It was a small thing, maybe not the best health decision I have ever made, but I felt good going back. Work provided normalcy for me, and I needed that. I did the same through chemotherapy. Some days I worked at home, sometimes I went into the office for a few hours. It felt good. It felt normal.

Control Three: My hair was glorious and healthy, a beautiful auburn color. My oncologist had told me that I had a 90% chance of hair loss even if I wore the dreaded ice cap during chemotherapy. I was not going to allow that to happen. The night before my first chemotherapy cycle I met my sisters, mother, and my friend Pav at my hairdresser's salon. We were having a Head Shaving Party! You heard it right!

All nine ponytails of my shaved off hair were neatly placed in a padded envelope and shipped over to The Little Princess Trust, a UK charity that makes real hair wigs from donated hair for children suffering hair loss. A month before the Head Shaving Party I started a donation drive to raise money to send to the charity along with my hair. A healthy $6,200 was raised for the charity.

Control Four: I negotiated my treatment with my oncologist: Four chemotherapy cycles instead of eight. Five weeks of daily radiotherapy instead of six. No go on Herceptin and Tamoxifen, I had to do those. "Oh, and I'm possibly relocating to the US later this year so kindly help me find an oncologist Stateside." And he did, on the condition the relocation happened after radiotherapy was done. 

Control Five: No steroids during chemotherapy. Ok, that was stupid one, but I had to learn the right way first. I found my way back to the light after the second cycle of chemo made me so sick I wanted to go to sleep and never wake again. The steroids helped.

And, there began my path to survivorship.

Four and half years later, I am still taking control. There is no decision I make in my life that I regret. Not one. And while everyone should make their own path and take control in their own way, this was my path.

Creating Butterfly Daughters, a blog about survivorship, is only one section of my life's path. I have more to explore and to do. I have more to give.

Survivor. Three syllables, eight letters. A short word, but meaningful. I am one.