Barbara Demorest is an American who participated in the Ulinzi Walk; a breast cancer awareness walk that took place on October 22 in Kigali.
As a breast cancer survivor, Demorest knows all too well the trauma and pain patients go through when dealing with the cancer, including a drop in low self esteem stemming from the deformation of a mastectomy.
This is why she started making Knitted Knockers; artificial breasts that can be worn after surgery. Demorest is also currently training random women, most of them from Musanze and Kigali, on how to make artificial breasts. She had a chat with Donah Mbabazi.
Being told that one has breast cancer is hard. How did you handle it?
It was five years ago when I heard the words no woman wants to hear, “you have breast cancer”. It was hard and I worried a lot. I worried about losing my hair because of chemotherapy and also my breasts. I had to go through a very hard time.
How did you come up with the idea of Knitted Knockers?
When I had breast cancer, I had a mastectomy. I was embarrassed about it and did not want anyone to know. Unfortunately, I was unable to have reconstruction and wondered what I could wear to appear normal, the available traditional breast forms to be worn were hot, heavy and required special bras, plus they were very expensive. They also could not be worn for at least six weeks after surgery. The doctor shared with me an idea he had heard of called a knitted knocker. (Knocker is a slang term for breast in the US). A friend of mine from church, Phyllis, offered to knit me one and gave it to me; it was light, soft, beautiful and huggable. It could even be worn in my regular bra. It changed my life as I could go out confidently and, looking normal. I knew then that we should make these knitted knockers available to women everywhere.
Breast cancer patients are faced with lots of challenges. Why did you think of helping in this particular way?
For me and many women like me, the lowest point of my journey of dealing with breast cancer was being deformed by the mastectomy. When I was unable to be reconstructed I was devastated. It was the first time I cried through the whole process. I just wanted to look “normal”, it was devastating and I knew I had to do something.
And are the knockers helping these women?
In the last five years Knitted Knockers have grown to the point where we provide up to 1,000 knockers per month all over the US and the world. They are received with great joy by the women who have suffered with the hot, and heavy traditional prosthetics. Many women have re-engaged with life as they were staying home rather than going out in public.
Bringing the idea to Rwanda, how did that come about?
Phillipa Kibugu, the founder of the Breast Cancer Initiative East Africa, contacted me about providing Knitted Knockers for the women in Africa because the traditional breast prosthetics that were donated by the US were not practical for the women here. They were hot and heavy and insects and rats would eat the silicone if they were left out. I knew immediately that this is something that we should help with. We proceeded to send some Knitted Knockers over to Rwanda and they were received with enthusiasm by the ladies.
Any plans of making this a sustainable initiative for Rwandan women?
We are practicing the principle, ‘give a man a fish and you feed him for a day; teach a man to fish and you feed him for a lifetime’. In order to be sustainable we are equipping women with the skills to make them for themselves, they will then go out into their villages and train others. Our plan is to inspire and equip these women and in doing so, they will help bring some comfort and dignity to their fellow women who have had a mastectomy.
Is enough effort being put in the physical healing of cancer patients?
I was talking with a doctor at the Ulinzi Walk the other day and he said that doctors have been trained to deal with the physical pain. He said that the disfigurement of a mastectomy can be devastating to a woman’s self esteem and was excited at the prospect of this as a solution. We have found that in the US, the doctors love them too. We partner with over 130 clinics around the US to provide them to their patients.
How does it feel to be able to reach out and lend a hand?
It’s fulfilling. We believe that by sharing the Knitted Knocker story and the impact they have on women’s lives, we can inspire these women to also make a change in their communities.
Any other plans you hold for the Knitted Knockers initiative?
Making Knitted Knockers could become a small income-generating activity that could enable women to escape poverty and take charge of their lives and their families’ while making a difference for other cancer patients. The vision is for hospitals and organisations to buy the knockers from the women at a reasonable price and then donate them to the women that can use them.