United Against Cancer: Renee Singh and Zainab Shinkafi-Bagudu on Advancing Cancer Advocacy

In this episode of United Against Cancer, Renee Singh, founder and director of Warriors with a Purpose, joins host Zainab Shinkafi-Bagudu, President-elect of UICC, to share her journey as a breast cancer survivor and her impactful work in cancer awareness and advocacy. Renee discusses how her personal experience with cancer led her to establish Warriors with a Purpose, a South African non-profit dedicated to raising cancer awareness and fighting period poverty.

The conversation highlights the organization’s efforts to empower communities, provide resources, and support individuals affected by cancer. Renee also reflects on the challenges and triumphs of her mission, the importance of building strong support networks, and the future of cancer advocacy. Don’t miss this insightful conversation about resilience, purpose, and making a difference in the cancer community.

Renee Singh is the founder and director of “Warriors with a Purpose” Foundation and “the Pink Bra Project”. She is also a member of the Union for International Cancer Control (UICC). As a breast cancer survivor, she focuses on promoting cancer awareness and offering support to individuals undergoing treatment.

Dr. Zainab Shinkafi-Bagudu is a global cancer advocate, a pediatrician, UICC President-Elect of 2024-2026, a UICC Board Member, a Founder of the Medicaid Cancer Foundation, and the Chairperson of First Ladies Against Cancer (FLAC). Dr. Bagudu is working with the state ministries of health, education, and women’s affairs to implement programs to sustainably improve menstrual hygiene, girl-child education, economic empowerment of women, and put an end to gender-based violence. Zainab Shinkafi-Bagudu is a member of the Editorial Board of OncoDaily.

Zainab Shinkafi-Bagudu: Hello everyone, it’s been a while and we’re back with our United Against Cancer interviews, a partnership between Medicaid Cancer Foundation and OncoDaily, where we try to highlight the important work that a lot of people, both male and female, are doing in the cancer space to improve cancer control. Today my guest is somebody that is very special, someone that has been a very active part of the advocacy in Africa, South Africa in particular, and someone who has lived the experience of this disease we’re talking about, which is cancer.

She’s a force to be reckoned with, a ball of energy, and I’ve not seen so much passion in someone for a long time.
I’m talking about the darling me, Renee Singh, who is the founder, director of Warriors with a Purpose, a non-profit organization that was established in 2021 in Johannesburg, South Africa. She’s a breast cancer survivor herself, and her journey with breast cancer inspired her to create a platform that is dedicated to advocating for cancer awareness and ending period poverty. Her mission extends across diverse spaces.

Believe me, she’s multi-talented and she works in schools, hospitals, churches, communities, any gathering she will stand out. Warriors with a Purpose promotes education and empowerment, very key factors that go together. She’s going to tell us about the milestones, so I’m not going to take the wind from her sail.

There are a lot of milestones that the organization has been able to achieve, and she’s going to tell us more about it. So thank you for joining us this morning, Renee. It’s a pleasure to have you on United Against Cancer.

Renee Singh: Good morning, Dr Zainab, and it’s such a great opportunity to be here. It’s an honor. I’m so overwhelmed.
I’m just overexcited and just refueled with energy, you know, to be part of this. So thank you so much for having me here. Thank you.
Thank you, Renee, for joining us.

Zainab Shinkafi-Bagudu: So we’ll start again from the beginning, your personal journey with cancer. This foiled you to really go into the advocacy space and establish the Warriors with a Purpose. We’d like you to share a little bit about your journey and what inspired you to establish this non-governmental organization, as well as the challenges and, should I say, the supports that you have been able to gain.

Renee Singh: I would like to start off, basically, Dr Zainab, by greeting you in six different languages in South Africa. Good morning, kwe mora, dumelang, sabona, tobela, and molo, although South Africa has 11 different languages. So thank you once again for this great opportunity and fueling my passion even further.

I’m eager to share my experiences I faced with being diagnosed with cancer. So in 2017, at the very young age of 37 years old, I was diagnosed with invasive lubular carcinoma, stage two, a type of breast cancer. I had undergone a nipple-sparing mastectomy of my left breast, which was done by a renowned surgeon in South Africa, Professor Carol Ben.

My chemotherapy sessions were from August 2017 to November 2017, and thereafter, in 2018, I had 31 consecutive days of radiation therapy. So personally, my chemotherapy was very, very challenging. I had experienced a breakdown in one of my treatments, basically, and I thought to myself, I can’t do this.

I’m not going to make it. However, I sobbed in my eldest son’s arms, who is going to be actually 27 years old next month. So I’m a mom of three beautiful kids, two boys and one girl, aged 27, 24, and 20 years old.
While under treatment, Dr Z, I had a blackout at home and I had fallen down the stairs. So my body was rather weak during the chemotherapy time. I had woken after a few moments and could not establish what had just happened to me.

My legs and my head were bruised. I felt a lot of pain. I had severe vomiting.
I also had the very strange smell of gases around me. So this was all in chemo time, that that’s what I smelled around me and my personal experience in my chemotherapy time. When I had entered remission near the end of 2018, that’s when I became a volunteer in the public hospital in the radiation department.

I volunteered for about three years in the radiation department. I wanted to reach out to many more people that were fighting the cancer battle. In 2020, I was honored to be part of the breast cancer interviews.
So we have the Ping Day Cricket in South Africa, which is a huge event in support of cancer. And I was one of the breast cancer survivors that we interviewed. So I was interviewed.

I was so overwhelmed and just my voice coming out, you know, and reaching more lives. And this was like my first experience, my first opportunity. And then just thereafter was March when the COVID-19 pandemic had come.
Through the COVID-19, for the rest of 2020, I continued to volunteer and reach out to cancer patients, despite, you know, the world’s pandemic and what we were facing, the challenges at that time there. In May 2021, I hosted my first cancer awareness drive. So despite having a successful event and the first one, I was not satisfied with my work.

I brainstormed further on how I could take the cancer industry to another level in my own very unique way. In 2021, I was given advice from a very close friend, a colleague and a breast cancer survivor to establish my own NPO. Those who know me, I love challenges and I love taking risks.

Although having my own NPO has been a tremendous amount of work, I have not once regretted it up until today, you know, of opening it. It started off great. I had support from various individuals.
I had hosted multiple cancer awareness campaigns. Having my own NPO was not easy at all. I had to put in hours of research in various fields.

I took it upon myself again to gain more knowledge in the industry and that would benefit more people fighting the cancer battle. There was a lot of tears, hard work and frustrations, but my family was there to give me the support I required on my new adventure and they still are there today. I was not going to give up no matter how tough it became and my work, my passion had just continued growing and growing.
It’s a passion that I can’t explain. It’s unexplainable and it’s very, very close to my heart. It’s my happy place.

Today, well, my passion, it felt like it wasn’t enough. It’s still there, but it felt like it wasn’t enough. So, I wanted to do more for the nation and Dr Zainab, until today, I haven’t given up on trying to achieve that goal.

Zainab Shinkafi-Bagudu: That is such an inspiring and awesome recount of your journey and very important, which is why we really emphasise as advocates and even global organisations like WHO emphasise the importance of having patients with lived experience as advocates and you are a simplified example of this. By sharing the journey, a lot of people, especially where we come from in Africa and even beyond, tend to feel that chemotherapy and radiotherapy is a death sentence in itself, but you, I repeat, are a living example. You walked us through a journey where it was gruesome.

Yes, it was gruesome, but you came through it and look at you today. Kudos and well done and we’re so pleased and excited that you’re using your experience and turning it into a positive story to help other people and you’re supporting other people through your non-profits and really creating that necessary drive. So, when we see the bad side or the not so nice side of it, the difficult and the hard side of the treatment, you come out of it looking beautiful, you come out of it able to articulate and to impact upon the lives of others.

So, please keep it up and continue to do what you’re doing. I really salute you. 31 days of radiotherapy is not a small feat and again, I repeat, well done, really well done.

So, we’re going to move a little bit to, should I say, the a bit more technical side of your work and that is, I know you do a lot of awareness programs, you have fitness classes, there’s so many that you do and for anybody that hasn’t followed Renee on the social media platforms, you need to go and follow the handles.

Maybe she will share the actual names with us at the end or we’ll put it at the bottom of the interview and please follow her so that you can really understand the work and the impacts that she’s having. Now, how do you track? For us, data can be a problem and without good sound data, we won’t get the required support for the non-profits, for the nations and the wider control of cancer.
We rely heavily on a lot of data and how do you track the work that you’re doing? What specific metrics are you measuring and does it help you in informing your strategies?

Renee Singh: Thank you, Dr Zainab. So, the primary source of the data that the organisation uses is through connecting with patients through social media platforms such as WhatsApp, which is the main one and the organisation currently has a WhatsApp group that includes many different patients, members. A vast majority of how we measure our impact is through feedback from such individuals.
Such individuals may provide recommendations, say on future programmes or events that the organisation can consider. In terms of physical metrics, the organisation does not currently track in numbers and how much it has impacted on individuals through its drives and initiatives.

However, recommendations and room for improvement is normally given through written communication via email or WhatsApp.
So, that’s great.

Zainab Shinkafi-Bagudu: You’re leveraging on the power of social media and this has often been WhatsApp and other platforms and I know you’ve been in quite a few groups and that helps you to leverage and to push the messages that you need to put across and that’s important as well. So, there I see that there’s room for looking more towards the specific data. I’m not sure how the system in South Africa works but I’m sure that through your hospitals and the ministries that you work closely with, you’ll be able to find out more about how you can input the good work that you’re doing because if you don’t record it, then it doesn’t happen.

Renee Singh: That is true. It’s only like sometimes, Dr Zainab, when it comes to like, say a public hospital and I deal with PRO and oncology, for example, adult oncology, kids oncology, I’m just trying to think it’s chemo brain, sorry, where we declare, yeah, where we declare, you know, like so say I had an event today and I did for let’s say perhaps 500 people, so then I would send an email off just updating them, okay, this is what I did out there, this is how much stuff or how many people and these are the items.

So, that sort of thing I have been doing but you’re not all around like and as you’re saying, so there is room for improvement on that definitely.

Zainab Shinkafi-Bagudu: Excellent, well done. Now, I know you’re a UICC member, the Union for Disease Control, you were at the last World Cancer Congress, you were also at the WHO’s workshop where there was co-creation, patient advocacy on how to influence cancer policies in a way that benefits the advocates and patients in particular. So, how do those warriors with a purpose collaborate with such international organizations?

Right there, I’ve mentioned one to advance cancer control globally and can you tell us about the specific partnerships you have been able to forge, what the challenges are and more importantly, what you would like to see, you know, what do you think we can do better as the world globally, how do we come together, what are your expectations from an organization like the UICC, you have connections with members in Japan, in Europe, yeah, so I think that’s a lot of talk bumped into one but it’s really to talk about partnerships globally.

Renee Singh: Definitely, okay, so warriors for the purpose, currently we haven’t made any partnerships with the international organization as yet but that is what I’m so eager to do moving forward

We’re planning on sending proposals out and approach various international organizations because like I attended, you know, the World Cancer Congress and just mingling with everybody, gaining more knowledge, understanding of different organizations, different individuals and people, there’s so much there, even myself for collaboration in South Africa to other countries but so currently there’s nothing where we have come together but I am now looking at, okay, let me get these proposals for the new year on its way and just see what we can do out there because concerning where it comes to my schools, public hospitals, communities, I actually want to go more out there to reach the communities, rural areas, underprivileged

So I’m looking at that there and I’m very excited, I must say, I am in contact from the Congress, we have a little small group and a UICC so I’m always on the go, you know, so I’m always like, no, we’ve got to keep this contact, guys, we’ve got to keep this contact

So I’m looking forward to it and whatever I can brainstorm on Dr. Zainab, my mind is working like always 200%, like, okay, you’ve got an idea, you have to go with it, you have to go with it, so and it helps me, it helps the next life out there, so it’s so important and I look forward to the partnerships, the collaborations, I am working, I’m going to look at the PGMP group and get Martha involved and Roseanne just to see, okay, who else is out there, although we’ve got individual contact, I think it’s also important just to put it down in email and see what positive feedback we can get.

Zainab Shinkafi-Bagudu: Yeah, that’s great and that’s one of the reasons why we attend these meetings like the Congress, to network and make those connections and I believe, I know you already have partners because I consider myself in Nigeria as your partner and you have already forged these partnerships, the World Health Organization co-creation workshop shows that they, you know, somehow your work and what you stand for has reached the WHO and you are involved as a speaker at these kind of occasions, so it will definitely grow from there and the UICC offers masterclasses that can help you with things like data collection and training you towards how to use all these contacts and improve cancer advocacy.

I believe you attended one of the sessions, you’ve done one of the courses, no?
You were not on that. Yes, which one was it?

Renee Singh: The CPD, that was the last session we did on the 19th where we got the certificates. Yes, yes, the CPD.

You know, from next year I want to go, currently I got like about five certificates, I must say, but it’s not enough, it’s not enough, you know, I want to, I want to grab the education, the certificates, I want to make the best and I’m giving my all next year, you know, so I’m looking forward, yeah, you know, to study and get more into it, so definitely there’ll be more communication right through and, you know, just seeing room for more improvement from individually, myself and the organization.

Zainab Shinkafi-Bagudu: Yeah, well that’s really inspiring, very motivating and I wish you so much, I wish you all the best in your journey, I know that you will do it, like I said she’s a force of nature, she just comes with all that energy and passion and it’s so difficult to keep up with her but it shows that she’s committed to doing the work that she’s doing. Thank you so much Renee, I’m going to ask you if you have any other final parting words before we round up, do you have any?

Renee Singh: We’ve also got, Dr Zainab, for emotional support, I just want to elaborate a bit on that, you know, yeah, with the support group, like our emotional support is extremely important in the cancer journey, right, and feeling like you’re alone and have no one to turn to, that’s very, very challenging, it can be an emotional breakdown, not everybody’s the same, not everybody’s positive at the same time and just being diagnosed with this disease, so we encourage survivors to reach out and talk about their feelings and what they may be going through.

Another one is educational material, so providing them with informative information material-wise as well as when it comes to treatment options, nutrition, side effects, anything that we can feel to make your journey a bit easier, we provide access to learning about it. So we’ve also have, or we currently have qualified personnel in different fields, such as oncologists, radiation therapists, patient navigators, as well as counsellors on the support group.

So this allows the patient to reach out and have access to any question or any, raise their concerns basically, and many patients, you know, in the battle, each one is different from the next, but it’s so important that one-on-one we can give that support as much as they need it individually. Our counsellor reaches out to patients struggling, that’s with mental challenges that come with cancer as well. And then lastly, we also encourage our patients to share their journeys.

So storytelling, sharing their journeys, although no two people’s journeys again are the same, just hearing about the next person or someone else’s journey, it might make you feel like, you know, at ease and that you’re not alone. So that’s one of the things, and we also foster hope and resilience by firstly making the support group a safe place. We want everyone to feel comfortable and to know that cancer is normal and that you don’t have to feel different or out of place being diagnosed with, you know, with this disease.
So we promote a lot of self confidence.

Confidence is very, very important in this journey. So it’s not easy feeling like yourself whilst you’re undergoing, you know, all the treatments and the surgeries as well.

So we do our best in helping patients to go back feeling fabulous and amazing as they are, you know. So we’re checking on them, you know, daily, just sharing hope and support on these groups, different types of cancer, different types of people, cultures, nationalities, as well as just encouraging them with a more positive environment all the time. I must say, Dr. Zainab, I’ve been impressed in the last two weeks.

So I have to tell you about this before we end it. So two weeks now, as much as I’m jumping around Facebook, Instagram, emails, TikTok, support groups, WhatsApp, it’s all, it’s just everywhere. So I feel like seeing motivation to a point that not just here in South Africa, globally.

So when I look at even you guys, Nigeria, I look at anywhere and I come even to South Africa, just all together, from our survivors to our advocates, our navigators, to organizations, to everybody in the industry, caregivers, there’s such a positive turnaround. And this has happened in the last two weeks where it comes with your pictures, your music, your advocacy, your awareness, your education, survivors, and I’ve been seeing this from their posts.

You know, I even put it up on my status and I said, I’m so overwhelmed that, you know, in unity and as we stand united to fight this battle, this challenging disease, it’s so nice to see a turnaround because I always felt there needs to be more support, there needs to be more support.

And in this last two weeks, well, going for three weeks, I feel that it’s gone to another level and that we’re flying the flag really high this time around. So that’s been amazing, you know, for myself, I’ve been overwhelmed and just seeing the positiveness out there.

Zainab Shinkafi-Bagudu: Oh, that’s so beautiful. And thank you for sharing that support, that’s a very, very important part. And that again, that’s the work that you’re doing.

You’re supporting a lot of people directly and indirectly as they go through the difficult journey that cancer can be. And just knowing that you have that group, you had good family support, you had a good health system, you had your doctors and not everyone is that lucky. So to be there for people, especially in our context where diseases like cancer are stigmatized and it’s very difficult for even your close relatives to give you that support.

It’s an unmatched asset, what you’re giving to cancer patients is really amazing. So thank you for sharing that and we pray that the world and the positivity and the light that is shining, that’s shown for the last two weeks, will become an eternal one so that we can really do more good for cancer patients. Thank you so much.

Thank you so much for having me. I’m going to commission a research that’s going to bustle your energy and your self-confidence. I’ll be a billionaire if I can bustle it and sell it out.

Renee Singh: But I can’t wait to actually come to the African countries, to Nigeria itself, because that was my heart about two, three years ago, because I do the pink bra project in support of breast cancer. I wanted to take it there. That’s the first thing I thought about before, you know, UICC, before everything this year, about three years back.
And I just feel the need still there. I’m coming there. I’m coming with the energy there.

Zainab Shinkafi-Bagudu: I don’t, I don’t doubt it. I don’t doubt it at all. I know we’ll be sitting here one day, I will just, the door will bust open and there will be that ray of light.
Before we go, I want you to say one last thing. Look straight at your camera and say United Against Cancer.

Renee Singh: United Against Cancer.