In the wake of actress Angelina Jolie’s announcement that she underwent an elective mastectomy, Buddies for Life spoke to Debbie Joseph, the mother of two young children, about the hardest decision she has ever had to take. She shares her journey of courage and hope with us.
The day after Christmas, the year I turned eight, was the first recollection I have of hearing the term breast cancer. My older cousin was breastfeeding her second child and had recently found a lump. At this young age, I didn’t understand the gravity of the situation but the news quickly dampened the festive atmosphere. I remember my mom giving trying to reassure everyone by recounting her experiences of mastitis and it seemed to bring a bit of comfort. Unfortunately, it didn’t last long. My uncle and aunt visited us a week later when they received the news that their 29 year old daughter had terminal breast cancer. This mother of two little boys only had a life expectancy of six months! I still remember my aunt screaming in pure agony about the injustice of her daughter being given such a death sentence. The road ahead was unbearably painful, although my cousin far outlived the six months, passing away 8 years later. But, that was my first introduction to breast cancer…
Fast forward 20 years to an oridnary afternoon, I arrived to visit my Mom and Dad and immediately sensed something was wrong. Eventually, my dad took me aside and told me that Mom had a large lump in her breast and a secondary one under her arm. She didn’t want us to worry but the biopsy had confirmed her fears, she had breast cancer. I remember using the same hollow empty platitudes from 20 years earlier. “Dad I’m sure they’ve caught it early. She is older, that is better than getting it when you are young. She is strong, she’ll be fine.” Except it wasn’t early and she wasn’t fine. Several oncology visits, chemotherapy, radiation, and a mastectomy extended my mom’s life by six years, but it wasn’t enough, I still needed her.
A sad goodbye
The end of her life was terrible. I remember sitting next to her breastfeeding my five month old little girl – the irony poignantly painful. How could a breast be so comforting and nurturing to one generation and a death knell to another? I knew that my mom was leaving me and I wasn’t ready to let her go. The truth is my mom had already disappeared, I couldn’t find her in that misty morphine induced quagmire. She was always so strong for me and I am ashamed to admit that I just couldn’t be strong for her. I was there in body but my spirit was beating its way out to avoid the awful, painful reality and the pungent smell of death. I hated myself for it; I hated myself for not being her pillar, but above all I just hated the disease. I looked away from the smiling faces of the nurses and the pretty pink ribbons around the ward; I hated it all, because my mom’s ‘face of breast cancer’ was squirming in pain, breathless, agitated, wildly confused. I once again felt like that eight year old, first hearing about cancer, bewildered by this awful, scary disease.
A week after burying my mom, we walked into the same oncology practice, this time for my aunt’s next round of chemotherapy. Only four months before her sister’s death she had been diagnosed with stage 4 ovarian cancer. I was resigned to losing my aunt; I knew the drill of stage 4. Of the four female figures older than me (on my maternal side) three out of the four had died, or were dying from breast or ovarian cancer, while one out of the two paternal female cousins had also died from breast cancer. I chatted to my aunt aabout the process of applying for genetic testing, but sadly my aunt died before we had finalised anything. At 37 years old, I was the oldest surviving female on the maternal side. Cancer had robbed us of mothers, daughters and sisters too early.
I looked at my sleeping kids that night and knew I would do everything in my power to prevent them from seeing me with breast cancer. I attended regular check-ups with Dr Carol Benn at Milpark Hospital and during each visit we chatted about the option of a risk reducing surgery. I initially saw each member of the multi-disciplinary team (breast surgeon, plastic surgeon, radiologist and psychologist) with my husband, to decide on the route forward. Originally it appeared that the most logical route was to keep my breasts and go for regular check-ups. That way if anything cropped up, we would catch it early. At each sonar I would see the radiologist mark a spot and measure little innocuous lumps called fibroadenomas, which are lumps composed of fibrous and glandular tissue. And each time my heart skipped a beat… I knew they were benign but it became increasingly stressful, because I seemed to be expecting the worst at each visit. Early this year I had to go for my my bi-annual sonar and I could just not bring myself to do it.
It was at that moment I knew for sure that risk reducing surgery was the right approach for me. It was not a decision that was made lightly or without much deliberation. After all I was opting to lob off parts of my anatomy. I have lost my real breasts to fake ones, I have lost the majority of sensation in my nipples and the procedure was very painful. I have lost the soft natural feel of the givers of life to both of my children. However, it is a small sacrifce to make as I will get to see my son’s next soccer match, my daughter’s first day of school, and their matric dance outfits. I hope that, in a couple of years, I will be at the receiving end of teenage angst and rage, and I will hear my Mom’s quiet chuckle saying “see I told you it is harder being a parent of a teenager, than being a teenager.” I hope to be there for two graduations, many ups and downs, for the times when my kids will love me and detest me. But, I will be there and that is what counts!
Written by Debbie Joseph