I am a survivor and I will inspire and educate others about cancer…
As we celebrate 2019 World Cancer Day, I cannot help but reflect on how I got involved in the Fight against Cancer with the hope that may be, my story will touch someone out there and make them rethink on how she/he views cancer?
My sister Mabel died in 1986, of metastatic breast cancer after being airlifted to a London Hospital for an expensive emergency surgery that could not save her life.
Like many African women, my sister knew nothing about breast cancer and where she lived in Lubumbashi, there was no single oncologist or cancer services or care.
My sister’s death changed me in a way that is impossible to comprehend– as I sat on that British Airways plane in passenger cabin with my sister’s body in the luggage, for almost 20 hours, I knew my life would never be the same again.
When in 1994 I received my own diagnosis, unlike my sister, I was an empowered and informed patient who without any doubt was shaken to the core, by this news that no one ever want to hear.
Yet again unlike my sister, the world renown MD Anderson Cancer Center was in my back yard – the state-of-the-art cancer treatment, care and support for me were a given.
On top of that, my cancer was detected at an early treatable stage because I knew the importance of Early Detection Practices: I did my monthly Breast Self-Exam, my wellness woman included Clinical Breast Exam and I had my annual mammogram, besides, my life style included regular exercise and a healthy nutritious diet.
Ironically, I came to find out later that you can do all this good stuff, and yet get breast cancer anyway. Breast cancer is unpredictable, does not discriminate and knows no boundaries. I remembered an African saying: “The enemy you know cannot kill you.”
This wisdom would buttress my determination to become the passionate advocate I am today.
Unlike my sister I survived and although relieved and immensely thankful to be alive, with a new lease to my life, I was perturbed by 2 gnawing questions that wouldn’t go away:
Would my sister be alive if she lived in USA? Should where you live determine if you live or die? I owed it to my beloved sister to find the answer; this lit a fire in me.
My sister represents so many women in Africa and I had to do something about it.
I see Health as a human right and if that is true, every breast cancer patient deserves the same chance to survive as I had. The struggle to answer the two questions fanned the fire and compelled me to start Breast Cancer Initiative East Africa (BCIEA) Inc. a 501 c,3, Nonprofit in 2008 in Houston, Texas and the same was registered in Kigali, Rwanda in 2009.
I had much going for me as an Educator with breast cancer life-experience anchored in the belief that Knowledge is Power – all my pain and trauma became my purpose. My mission became to reach out, teach, touch, change and save life from the devastating impact of breast cancer.
My tools are my experience, lessons learned, awareness/education, empowerment, support and research surely, I could do something with them even without money and make a difference.
BCIEA was established in the memory of my sister who represents so many Rwandan/African women who deserve the same chance I had. I had 28 years of enjoyable classroom experience teaching children that I had to be grudgingly exchange with early retirement and dedicate the rest of my life to teaching breast health to adults.
Our story is a powerful illustration of the divide that exists between high and low-income countries as far as breast cancer is concerned; it is like day and night. Something must be done to change it; it behooves each one of us to make individual commitment and act.
In gratitude and unstoppable desire to make a difference (benefits of being survivor) I was compelled to embark on a new journey with passion and strength, I didn’t know I had, and I have never looked back.
I AM A SURVIVOR/ADVOCATE AND I WILL INSPIRE/EDUCATE OTHERS
I am optimistic and fully embrace WCD 2919 theme that emphasizes individual commitment: I Am And I Will, the call to action and the power of each one of us as individuals to reduce the impact of cancer for yourself, for people you love and for the world – this gives us ownership and accountability and consequently working Together we are a stronger force against cancer.
I viewed this as excellent endorsement from UICC, the biggest cancer organization in the world of something I have promoted in my simple small way. The barriers and challenges don’t make it easy, but when I look at the status of breast cancer in Rwanda between 2009 and 2019, I amazed by the major strides we have made.
It is hard to find anybody who has not heard of breast cancer; most of us have been touched by this disease directly or indirectly. BCIEA’s call to arms: Ikunde, Imenye, Isuzumishe continue to spread across the country.
We have raised significant awareness, understanding and breast cancer is a topic in conversations at home, places of work, churches and among the youth—we are breaking the silence.
In 2008, mastectomy was the only treatment option in the country, when I met 27 depressed, lonely, helpless and hopeless breast cancer survivors; today our survivors can choose to belong to our Breast Cancer Survivors Support Group and thrive.
We have made-in-Rwanda Knitted breast prostheses for anybody who needs them, and women can regain, hope, confidence and improved self-image usually damaged by loss of body organs.
What is most exciting is that whereas in 2008 Rwanda did not have a single oncologist; today we have 9 Oncologists, 12 Pathologists and Rwanda plans to spend $3.4 million on training cancer specialists comprising of Radiologists, medical physicists, Radiotherapy Technicians and Oncology Nurses.
The establishment of the Oncology Center at Rwanda Military Hospital, with two Linear Accelerators plus other imaging equipment means Rwandan cancer patients now have more affordable treatment options. They no longer have to worry about expenses of traveling abroad for treatment.
The future looks great.
Through Knitted Breast Prostheses project, (thanks to BCIEA partnership with Knitted Knockers Foundation USA) our beneficiaries have gained income generating skills and financial literacy. However, we have not been able project how many prostheses to produce to meet the need because we have not been able to get data on numbers of mastectomies performed in hospitals, but we learned that Cancer Registries are being established to be ready soon.
Through BCIEA’s One Smartphone per Village project, our trained Village Ambassadors have become loved and trusted sources of life-saving information at their village Umuganda meetings and Umugoroba wababyeyi.
They are quick to seek help if they have tough questions, they are unable to answer and/or are able to make clinic referrals for people who need help. We started with 15 Ambassadors now we have 23 and plan to train more soon when funding becomes available, Rwanda has 14,847 villages and our goal is to have one trained Ambassador in each village.
We need support to reach this goal.
By 2018 through our community education outreaches that include clinical breast exam by trained nurses, we had educated over 10,000 women, men and youth about the basics of breast cancer and we are pressing on despite funding challenges and lack of skilled manpower.
We believe in using what we have to get to where we want to be.
At BCIEA, Breast Cancer is Everybody’s Business worth investing in to save life. Although we are making progress much remains to be done, late stage breast cancer presentations associated with lack of awareness remain prevalent.
Feelings of fear, shame, guilt and stigma and poverty prevent patients from accessing available medical services. Breast cancer remains the most commonly diagnosed and the leading cause of cancer death in Rwanda. Patients have unmet management, supportive care needs before, during and after treatment (RBC).
BCIEA’s Wellness House offers overnight transitional safe space for our patients to and from treatment is also a haven for our beneficiaries for information, meeting and training.
The Prevention model Wellness Garden is everybody’s favorite as an example of maximizing space to meet basic health needs. We grow our vegetables, fruit and herbs some of which we sell, eat and use to teach healthy food preparation.
“Catch them young” is our favorite phrase in reference to our promising Creatively Pink Youth Club in partnership with Medical Students Association of Rwanda that is aimed at educating Secondary and College Students about cancer and issues related to it.
This group become powerful ambassadors and volunteers at home and throughout the community. Some of our beneficiaries have confessed that they alive because of their children: “My son insisted that I go to the doctor to be checked, I wouldn’t be here, but for him”
The major challenge is for the people to understand that breast cancer is physical disease not spiritual and to embrace evidence-based strategies for preventing it, reducing its risk and controlling it. Students are powerful change agents, our future.
As informed adults they will make informed healthy decisions. BCIEA Annual Ulinzi Breast Cancer Awareness Walk is another popular platform of solidarity where people gather to support the cause, celebrate life lost, survivors and those living with the disease.
It is time for fellowship, networking, sharing learning from Open Community Forum conducted by a panel of advocates, survivors, physicians, community leaders, policy makers and youth representatives.
This event includes public free Clinical Breast Exam and general basic health screening. For the past three years, BCIEA in partnership with 2 medical professionals at University of Rwanda has been collecting data on the scope of awareness at this walk and in 2018 Breast Cancer Awareness Survey of Participants at Annual Walk in Kigali.
(Ruth Sego and Pamela Meharry and others) was published in Rwanda Journal of Medicine and Health Sciences Vol 1 No 1, 2018. Based on their study findings participants who attended 2016 Ulinzi Walk correctly identified “breast lump” as a warning sign of breast cancer, though the majority was unaware of other breast cancer signs.
It is therefore important to increase awareness and education as women and men aware of breast cancer symptoms would seek health care sooner and reduce late-stage breast cancer presentations.
Study called upon policy makers to increase public awareness of the importance of early detection to improve breast cancer outcome and survival rates in Rwanda. 2019 is BCIEA’s milestone as we celebrate our 10th years of service and bringing Hope to breast cancer patients in Rwanda and my statement on WCD Theme is:
I AM A SURVIVOR/ADVOCATE AND I WILL INSPIRE AND EDUCATE
My pitch is: #breastcanceriseverybodysbusiness, worth investing in to save life.
The writer is the Founder and CEO, Breast Cancer Initiative East Africa (BCIEA) Inc.