Bidii interviews Marlene Ellis, of Black Breast Cancer (BBC) – – who has been fuelled by her own experience of breast cancer to create a much-needed resource to support Black women (and men) around the world!

What made you create the BBC?

The website is what I wanted, when I was first diagnosed. You don’t really have to think about it, until you are suddenly diagnosed with it and join a club you didn’t want to belong to. The first thing, in this day and age, was to go to Google to find out something. I realised as soon as you are diagnosed, you are on this conveyor belt.

You think “hang on a minute. I don’t know!” I thought I knew something, but when you are personally impacted, the first thing I wanted to do was speak to my own people. It was extremely important I speak to other Black women about what they did. What happened to them in these circumstances? What am I supposed to ask? I’ve lived in Brixton twenty odd years, I know lots of Black women, and yet I only knew one person that I could go and speak to. And it shocked me. I could not see anything on Google. I did not have anybody in my immediate life. It’s not like I was living in the Outer Hebrides. I was living in Brixton, but I didn’t know where to turn to. So that was the motivation. The website represents what I wanted to see when I was diagnosed.

As a breast cancer survivor what has that taught you?

You know, I am trying not to call myself a survivor. I can’t think of an alternative. I don’t like it because it suggests you’ve got to have the right frame of mind. But what of those of us that didn’t survive and passed away? We lost them, but they were no less courageous, and somehow it’s like there is something else. But I can’t think of the alternative… yet.

When I was diagnosed there was this little voice that said “but you didn’t do this, you didn’t do this and now your life is finished and you said you were going to do this!” And I got in that second the things I had been putting off in my life, that I thought I would always have time for. I knew that if I was going to survive, I would never waste time again. I will do exactly what I want to do. I will stop procrastinating and trying to get all my ducks in a row before going from A-Z. I am only getting up to do what I want to do, and my life is so much more fulfilled because my mindset changed. That was the biggest thing I got out of it. My mindset changed!

As a black woman with breast cancer what information did you find difficult to access?

It was trust. I was born in this country and grew up appreciating the NHS, the idea and principle of the NHS being better than a private system. But then, as a Black woman when I was diagnosed, you think of the trust between Black and White but never had my levels of suspicion become so high as they did when I was diagnosed. I thought, “do I even trust you to deal with me with this serious disease.” I was so concerned about the trust issue, and I did not know I had so much distrust. I was looking to feel better at subjecting myself to this chemical process and looking for the alternatives. I had been told if I didn’t take the treatment (I resisted for about a month), I would die between 6 to 18 months. I did not know if that was true or not. I love alternative treatments and I am a vegan myself, before I was diagnosed, and basically, I was looking to be reas[1]sured. I was looking for trust, and I’ll be honest with you, it was about being a Black woman. It was about all the stories I had read from family and friends. The relationship between Black and White people and Black patients. And was I safe? It was a big thing, and I think it is a huge thing for many of us. I chose the chemical route blind, because I felt I did not have enough time. I felt that I was diagnosed and I had to make a decision and act. And what I already knew about Western medicine was that when it’s a crisis Western medicine can kick in. But it is the lifestyle and the mindset we have to change, long term, to avoid reaching that crisis. I know it is sort of an odd answer, but the issue I was looking for was to be reassured, to find trust. And what would I base that on? In the end, I just walked in blind, not confident either way.

Why is it important to understand how breast cancer affects the black community?

Not to undermine the importance of other cancers, especially prostate cancer, which is just as serious for men! But in terms of women, this is largely the most important type of cancer since it’s killing us the most – Black women. And that’s people of African heritage, whether you are British born; you’re in Europe; African in America; the Caribbean; or from indigenous populations on the African continent. But here is the thing – this is a global pattern that has Black women dying 40 per cent more than White women, for the same breast cancer diagnosis. Now that is whether we are in the UK, with a public health system, or the US, with a private health system. So there must be other factors going on.

I learnt that when I was diagnosed, my oncologist told me that in South London there was a percentage, 40 per cent, of us dying faster, just in South London. I was shocked when she told me that. She said it’s because we hesitate to get help. So, in a sense, it was our fault and I thought we must spread the word more. I am a researcher anyway and I am a doctor in education, a race-cultural theorist. So, I looked at the pattern nationally and then globally and saw that this is a pattern across the globe for us as an African people. This is really serious, if it is 40 per cent. I kept thinking what was going to happen to the next generation, if it’s 40 per cent now?

We get involved in the pink ribbon charity and collecting sponsors and collecting money to give to the pink ribbon (the main global charity for breast cancer), but nothing is happening for us. There doesn’t seem to be a budget that’s dealing specifically around us. That shocked me too. It was really shocking. So, I genuinely believe we need to take control of this ourselves; it’s not to say turn your back on medicine. But we need to talk to each other, really get to grips and learn how we are reacting to these cancers. I think we are too attached to shame and keeping things private. The burden of racism is hard enough, so we are not sharing. And we do need to share, because as long as we keep things quiet, we’ll bury our heads a little bit, then the next person will delay and so on. We build confidence between us if we talk together. For example, the first generation of our people would go to a doctor with so much respect for the medical profession. So, when they’d say “it’s nothing, go away” we’d practically say “sorry for wasting your time” and go away. We need to reverse that and say, “hang on a minute!”

It’s a matter of fact that we don’t get referred to breast screenings and other tests as fast as White women. It’s a fact that there is a belief that we can sustain more pain than White women, and this is grounded in research. We need to talk to each other and build up each other’s confidence. And that is the reason I made the website. There’s lots of people giving testimony, Black men and women, because we need to have a much stronger conversation with ourselves to avoid disempowering ourselves when we get cancers. Let’s really talk to each other and say “what do we do about this? What’s our part in this?”

What other advice do you have for women?

I would say treat your diagnosis as a reset button on your life! It clears the way, and you start again. Grieve for the old you and celebrate the new you, and really honour who you are. This is your time to regain something of you.  When you are diagnosed, you face death no matter what stage and type of your breast cancer diagnosis. You face your own sense of mortality, but if you have the privilege to carry on living, do it differently.

What are your aims for the site?

There are lots of things on the site! I hope you find them really useful.  But I really would like to invite anybody who has had breast cancer, women and especially men! I am trying to push it out that men also get breast cancer, with a 76 per cent higher mortality rate than White men for the same diagnosis. Think of doing your own videos of your story. Send it in, so I can add it to the body of knowledge and sharing on the website. That’s what I would like to say – really contribute and make it engaging! Make it organic, so we are really giving and exchanging right across the globe.  This is not just a UK thing but for anyone across the world!

Visit the extensive research and resources available on the BBC site – Taking you through the entire journey from breast screening to hormonal therapy and everything in between.