Sail On Silver Girl - Mmathapelo (33) Metastatic Breast Cancer (06/07/2013)

“When you're weary
Feeling small
When tears are in your eyes
I will dry them all…”

Lyrics Bridge Over Troubled Water Simon & Garfunkel

 

How do I suddenly write about my young vivacious and highly smart friend in the past tense?

 

My heart is sore.  My soul is aching.

 

UNREAL.

Breast cancer interrupted my life 7 years ago.  (A month after my 37th birthday).  Breast cancer has again cast its dark shadow on my life. Breast cancer has stolen my  and has AGAIN left me reflecting on how privileged I am to be alive – survived my cancer and heart disease diagnoses when an  increasing number of my fellow Black young women are perishing before their 37th birthdays.

 

Soweto’s Nomsesi was 36. Zimbabwe’ Felistas was 35.Mmathapelo died 3 days ago (Saturday 6/7/2013). She was only 33. As a trained advocate, I knew the prognosis was dire in each case.

 

These young women had highly advanced metastatic breast cancer and were being treated in public healthcare facility with sub-optimal oncology units. The combination of late presentation by the patients and limited cancer services are a lethal mix.

 

This latest loss is particularly painful.  A dynamic would-be breast cancer advocate has died. She was a young Black public healthcare patient who clinically understood her disease and was determined to learn more despite her limited access to the internet and other medical knowledge resources. Never before in my 7 years of cancer advocacy had I met a Black sister so willingness and determined to educate herself, to debate her medical options and to keep investigating what else was there. She cultivated this ferocious appetite for patient empowerment in her mother, and I am told, in her fellow patients as well. She was a rare jewel and I had hoped to actively mentor and recommend her for further training through the National Breast Cancer Coalition’s Project Lead - a basic science training programme for breast cancer advocates. Unlike other young women from the townships and suburbs, Mmathapelo was a self-starter who did not wait on me or any knowledge source to bring her breast cancer knowledge - she sought it out and shared. Always emphasizing clinical understanding.

 

 I vividly recall how her tired eyes sparkled as she lamented the fatalism of some of her fellow breast cancer patients. She was enraged by patients who give up the fight or abdicate their health outcomes to their medical teams.

 

It was perhaps, this unquenchable thirst for medical information that taught her to be cautiously optimistic about her surviva outcomesl.

She understood that the odds were heavily stacked against her. Ever increasing physical limitations were her lot.  She endured aching bones, shortness of breath due to constant water retention in her lungs, fatigue, reduced mobility, forgetfulness and heavy depression because of the lack of proper psychological counselling support, Her biggest challenge was the social isolation she felt about being young, Black, talented and living with metastatic breast cancer and a failing heart. She was living with a non-mainstream version of breast cancer – a swift recurrence (6 months NED), aggressive, late stage disease that had spread  to her bones and lungs.

 

She felt alone despite the warm loving support from her family and friends.  She lamented that they did not fully comprehend the challenges she faced as one so young and so gravely ill; the social isolation, fear of death, grief caused by sudden loss of vitality, etc. She raged in frustration that they did not fully comprehend what it was like to have your life interrupted in your prime.

 

They did not understand, and yet she accepted generously, that they could not understand for they had never walked in her moccasins. And was grateful that I could relate and empathize because I had been in her predicament.  This knowing and understanding of what it is like to live with the prospect of “early death” – bonded us.

 

She was matter of fact in our conversations; she knew she was more likely to die than to survive her metastatic breast cancer. Yet, she was not morose. Mmathapelo still had dreams of contributing to breast cancer control in Black communities, especially among her age mates. She had already started an informal patient support group at Steve Biko Academic Hospital in Pretoria, where she was a patient.

 

I fondly recall how her big eyes sparkled as she spewed clinical terms of her diagnoses and side effects and she took enormous pride in her ability to engage her medical team with her care options and decisions. 

 

She has died and those of us who knew and loved her have been left bereft. Reeling with disbelief at how swiftly it happened.

 

IT IS SO ABSURD, especially since she died a day short of the 3rd month burial anniversary of her maternal grandmother – UnaJiyane (76). Lost to breast cancer too -  buried Sunday 7 April 2013.  We sat at her gran's place on the day of the funeral, in  the township of Emalahleni (formerly Witbank) with tears of grief and defiance clouding our eyes. We promised each other that we would give a voice and face to the scourge of breast cancer assailing us and our Black sisters. We committed to change the status quo by telling and helping other Black women with the disease tell their lived experiences of kasi breast cancer in a dignified manner sans the usual awareness razzmatazz. We yearned for Black voices to be heard (our medical needs, psycho-social and cultural considerations, structural barriers to access – use of language in clinical setting, race, class, gender, poverty, etc.)

 

The challenge of addressing the burden of this disease in Black communities is enourmous.  Her family has seen three generations of breast cancer yet the disease was still a taboo subject. This added to her sense of isolation. No meaningful conversations were being had among her people, other than with her mother, about the clinical disease and its impact on the family. Comfort came largely through material support – and rushed personal interactions. She was a vivacious young woman who liked to talk about everything, including her possible death.

 

I called her 5 weeks ago inviting her to apply for a bursary for the upcoming African Organisation for Research & Training in Cancer (AORTIC) Conference – satellite Advocacy Workshop, scheduled to be held on 20 November 2013, in Durban, South Africa. There was a long silence and she continued in a matter of fact way, “I don’t think I will be able to attend. I might not be around. You know what I mean?” My blind optimist protestations did not sway her. She refused to apply and moved the conversation to a “doable” task.

 

Once again, I have rudely been reminded not to take my mortality or that of my loved ones for granted.

 

 She has died just a month before what was to be her greatest moment of pride. No she was not about to get married or anything mainstream for a young beautiful woman like she was.  Women’s Day 2013 – August 9th, was a day on which she was to be honoured for her achievement as a sports woman – in a code that she was one of the “the First Black Women” to get colours. I can still hear the pride in her increasingly tired voice as she invited me to attend.  This was to be her “Sail on Silver Girl, Your Time Has Come” moment – when people would be reminded of the woman achiever she was.  This would be that rare day when her name would not be “cancer”. This would be a day when her claim to fame would not be her being a medically interesting case of “a young Black metastatic breast cancer patient under 35.”

 

 Alas.

Sail on Silver Girl,
Sail on by
Your time has come to shine
All your dreams are on their way

 

Go well ntwana. I am angry and selfish in my grief. Why now and why so quickly? Yet my selfishness knows bounds. I wouldn’t want you around if we couldn’t scheme, squeal and storm breast cancer barriers together. Sail on Silver Star. May you always be beautiful like a diamond in the sky.


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