Eniola Akintunde : Championing Advocacy against Colorectal Cancer

After she lost her husband to colorectal cancer, Eniola Akintunde has over the years shouldered the advocacy of cancer with Niola Cancer Care Foundation, majorly streamlined for colorectal cancer. In this interview with Ayodeji Ake, she testified of how she overcame a growing lump on her breast, the misconception between religion and health and her ongoing advocacy for Private Public Partnership to reduce the high cost of cancer treatment

How did your brush with a growing lump on your cleavage happen?

Last year, I had a lump. I was checking the lump. I was actually monitoring it but it’s a small lump like pimple size. It was on my cleavage. As a cancer advocate, I wasn’t comfortable so I was monitoring it from time to time. I spoke to two or three doctors and I explained to them. I was asked to report back to the hospital by February. When I went to the hospital I was told to come in March since it wasn’t paining me, it was just pimple size. Then lo and behold, this thing changed form and I was wandering was it. Then March ending, it became swollen and at that point I was afraid and I went to the hospital and they did test. I went to Lagos State University Teaching Hospital (LUTH) for a diagnosis but it kept getting bigger. Then I called some doctors. We were waiting for the Biopsy report and that waiting period was tough. I felt for someone who is cancer advocate and with all what I have seen and losing my husband to cancer, not again.

And then, the result came out after one week and to God be the Glory I was told that it is just a lump that it’s not cancerous. But it was very painful, I couldn’t turn, I couldn’t stand up. I was using pillow to guide myself for about three weeks. For like a month, I couldn’t do a lot of things, I was indoor. Then I had to go to the LUTH, at a point the doctor opened it and surprisingly, this thing that they cut open close up again and the doctor advised we should keep monitoring it. Whatever it is, we will see the end of it and why I needed to share this story is because most Nigerians have found theirselves in the same situation and some of them will not do what they need to do. They won’t reachout, they won’t get it checked out. They will think it’s just a normal thing. Yoruba will say it is ‘ewo’ (boil). You don’t have to take that decision; you need to get it checked out. Let’s be sure what exactly it is that’s why I need to take this out there.

As an advocate, that is what we have been talking about in the advocacy community of Nigeria. The church and other religious centres have a role to play. Yes I saw it, it was fearful, it was scary but this is a lump and what did I do? I went to the hospital to get it checked out and next called my pastors, set up a prayer group for me, log into some online prayer outlets for my healing. I did it, I won’t lie about it. Then people raised prayer points on my behalf but I never neglected my doctor’s advice. And I never missed any of my appointments. I went to all of my appointments till the lump disappeared. It actually disappeared. Though, the doctor advised that the ruminants of the lump need to be removed so I’m going to get it removed since it has shrunk to some extent because it was as big as baseball at the middle of my breast. I got talking to one or two people and they said I need to share this to encourage people out there. You don’t need to hide it or hide yourself. You don’t need to conclude on what it is when you are not sure.

How can the gap between religion and health be bridged?

The simple truth is to take that advocacy message to our religious centres. In all honesty, some of these things are true about some Christian organisations. It is a known fact and a much tabled fact that if you ask some of our doctors in private hospitals in Lagos state will tell you that some church members, even in the cancer advocacy community, we know some of these things are true. The members, they report at the hospital when it is far gone. Some people come to this foundation and we ask them why are you just coming? This thing is already late. Didn’t you notice? At what point did you notice there was a lump in your breast? And some of them tells us that we were in this particular Christian home that they were there using the handkerchief but I never asked them if the Christian organisation asked them not to go to the hospital. I never asked them and they have never said their organisation told them not to go to the hospital.

What we trying to say is that is why we are calling out to religious leaders to please balance it up. The role of the church and prayers when someone is sick is different. Hospital is where treatment is taken and the two must go hand in hand. None must be abandoned. When the churches are praying for the sick, yes prayer is good. When I had the lump, I reached out to my pastors and they set up a prayer group and I never joked with it and I believed in it and at the same time, I never missed my appointment in LUTH, then all the drugs I was given, I used it. So these are the balance we are talking about. So pastors and Imams should please allow and talk to their members, encourage them to take Orthodox seriously and take their medication as at when due and when necessary.

Some do not even have the money to carryout tests so how do we try to address this issue?

First and foremost, late presentation is when they have cancer already. But what we are talking about is prevention which the non-governmental organisations, like ours, are so committed to. Pick it early and get screened before it even gets to the level of talking about late presentations because we all know the challenges of the health care system in Nigeria, we can’t over emphasise on it. It’s what everyone knows that it is in jeopardy. But we are hopeful that things will turn around for good.

What we advise as an NGO is that everyone has the responsibility to start taking care of their selves and be conscious of what you allow into your body. We encourage as an NGO and tell Nigerians to start eating organic foods. Let your food be your medicine. What are you feeding your body with? Nigerians like party, they like to wear good clothes but going for medical screening they don’t do that. We have to start imbibing such culture. We have to start looking after our body and self, that should be your number one priority. When we start doing this, we can curb the incident of cancer because when you get screened, they can pick it early and when they picked early, it’s not as bad as we think of, we should speak out, let’s know where we can help as an organisation. When it is picked early, it doesn’t need us raising millions of naira, it doesn’t cost us emotional, psychological trauma that we have to go through. But unfortunately Nigerians don’t even go for screening.

Tell us about your foundation?

Niola Cancer Care foundation is a Colorectal Cancer (Colon Cancer) NGO. We are the first in West Africa with a lot of work to do. There is still minimal awareness on Colon cancer and we are seeing cancer and Colorectal cancer in younger Nigerians. Infact, it is a global challenge that we are seeing our young adults having Colorectal cancer. Research has been linked to what we are eating. And that is what is happening in the country right now, you see us imbibing the eating culture of the western world.

So what is Colorectal cancer? It is the cancer of the Large intestine. The tumour starts from the large intestine to the rectum. So we have to go back to what we talked about earlier. It’s mainly about food. Unfortunately right now Colorectal cancer is tilting towards the third cancer from fourth killing Nigerians. Breast cancer, cervical, prostrate then Colorectal respectively. Colorectal symptoms mimicks ulcer and pile so sometimes they mix it. The symptoms are simple, weight loss compared to normal symptoms do cancer disease, blood in the stool, diarrhoea, sweating and losing weight.

When with general physician is treating you of ulcer maybe for six months and you are not getting any results, you should be referred to a specialist doctor and ask questions. Another thing is Nigerians don’t ask questions. We don’t ask the right questions and we don’t ask the right people the right questions. Nigerians will leave their doctors and start asking friends and family. These are the things Nigerians should do and know. We should start doing it. So get a specialist doctor and let them check exactly what is happening. Then our diagnosis too, there are lot of problem, the problem with cancer advocacy is high rate of Colorectal cancer is it multi-facilitates. But we are not going to be tired; we will continue talking about it. Then with the pandemic, it hasn’t made things easier.

Globally, attention has been shifted to COVID-19 to the detriment of other diseases. According to global term in 2019, the data for persons that died from cancer global is 10million. Is that not more that COVID-19? So what are we talking about? You can imagine what will happen in 2021 when the focus doesn’t shift back to cancer and everybody is now facing COVID-19. So everyone has to keep the conversation going, we have to keep talking about it, creating the awareness. COVID-19 hasn’t taken more life that cancer. Honestly for me, because of the insecurity in Nigeria, it has affected cancer care. Patients in remote state don’t have access to cancer care. They are afraid of kidnapping, there is no road to go for their treatment. They are in the village, they are afraid, even the doctors too are at risk, and they can be kidnapped too.

True, but how can the PHCs help in cancer interventions instead of traveling far?

True, the machines are quite expensive but are not all the screening that needs machines. Machines are most times for treatment. Like for colon cancer, the machine is quite expensive but in primary health care centre, there are some primary activities for Colorectal cancer test that can be done . These tests can be carried out in our primary healthcare centre.

For breast cancer, the self-examination can be taught in any primary healthcare centre. For cervical screening, right now Lagos state is doing free cervical screening in primary health care centres. So anyone can walk into any PHCs. It is a good one if the government can please continue with this trend because the primary healthcare centre is the first place where someone sick in a community should go to. So it’s the grassroot and it’s the best way to go.

During the onset of q COVID-19, we had support from the private sector, how can we charge the private sector to help cancer patents too?

I have said this repeatedly and I will say it again all over the world globally, no country leaves the healthcare sector in the hands of the government alone. The private sector needs to key into it. Journalists need to come into it too because they are also stakeholders. But we are not having that in Nigeria when it comes to cancer. We will keep talking about it. We expect more from the private sector because they too are also loosing, because in an organisation if two of your staff has cancer and you need to take care of them, its millions. A patient can take 100 million naira. Would you rather spend that 100milliom on one patient or would you rather start thinking of how we can prevent this thing and spend the 100 million on prevention which we as an organisation is committed in doing? The support the private sector gave and the individual donating to support and curb COVID-19 can be replicated to change the cancer story globally in Nigeria especially.

As a cancer advocate, what effort have you made to incorporate NHIS into cancer system?

On that we are still talking with the Nigerian Cancer Society which is a body that we belong to and they are representing us well. Niola Cancer Care Foundation is a body that we belong to. Last two months, there was presentation that the society did at the National Assembly in regards to that and we were told that they are working on it. At that point we got some information that we even have about 10billion naira that has not been spent for cancer control. This information we just heard about the NHIS and we are working but I won’t be able to talk too much on it because it’s a work in progress. Before now, we as an advocate has actually mentioned it several times, it might look like an attack but because we want it done we have to hold them accountable and I think work has started on it now so I won’t want to say too much on that.

How differently do you want to fight stigma if everything has been put in place?

What we can do as regards stigma is that we won’t stop the advocacy by taking that message out there and tell them that they don’t have to stigmatise a cancer patient. I still want to do a write up that I want to publish. If you have cancer, it doesn’t mean that God does not love you and cancer is not contagious. Nobody is immune to cancer so if you stigmatise someone because he or she has cancer it might be your portion too. It might happen to you. Sadly, when you want to talk to Nigerians about cancer, they tell you “no it’s not my portion” and I ask them whose portion is cancer? So the stigmatisation, we keep speaking about it. I use myself as an example when people talk I tell them my late husband had cancer. We had sex till he died, here I am, and I don’t have cancer.

At that point people knew my husband had cancer, people abandoned him, even some of his very close friends, I didn’t see them again. Maybe because of the stigmatisation or maybe because of the cost of treatment. When you mention to someone that a chemo of N360,000 naira is for every ten days, people will run. People ran away. After he passed on, I’m okay and this is me. I don’t have cancer so we just have to be communicating to them out there. You don’t have to stigmatise a cancer patient. It’s not contagious. It’s not your fault that you have cancer.

And you can’t control most of these things that cause it but what you can control is what you eat so that is what you can control. You don’t have to stigmatise anybody, what you need to stigmatize is eating processed food. Stigmatise the intake of what you put into your mouth, control the toxins in your environment. Some people will spray pesticides inside their house and stay inside it, go out when you spray it. These are some of the things that cause cancer, we all know. If you live in a high populated industrial estate, you need to know what to do, either you move out of that area or you know how to control yourself or what you eat. So that is what they should stigmatise not people or family of people that have cancer.

Infact people that are cured of cancer should be celebrated. This month is for cancer survivors so we celebrate them. In a developed country, they don’t joke with cancer survivors, they allow them to share their story and speak and we are also encouraging them to start coming out too. Nigerians should embrace cancer survivors. This is not the time to stigmatise or run away from them. Because if they come out, there is a lot we can learn from them. They will give hope and if you know how they were able to get cured, they can teach us and we can learn from them. Show them love.

Would you mind to share the success stories of Niola Cancer Foundation?

The year 2021 has been so interesting and is still interesting. You know it started from 2019 with the pandemic and I must be truthful, it is not easy. The year is almost gone and we are not giving up as I have said we won’t stop. If not because of the pandemic Niola Cancer Care Foundation is planning its annual event for the year which is Ijoya which will be the fifth one we are having. That is the only program we have, although we have our in house patient that we are supporting in our own little way but because we don’t have enough finances but whatever we can do, we do for our cancer patients in our little way and we have some end of life cases too. I have been advocating and I will still plead that the federal government should please legalise marijuana. Yes because Nigerian has more cases of end life and palliative care and we don’t have enough space. For a country that is over 200 million, hospitals are not enough when we have plenty cases of end of life and we have patients on palliative care. Palliative care has no cure and they will be in terrible pain and we have seen other countries who are using marijuana to manage pain so because marijuana has negative effects, should we now throw it away when it has other benefits for humanity? I completely support the legalisation of marijuana in Nigeria and I’m clamouring for it because of cancer patients. Niola Cancer Care Foundation is appealing to the private sector to please come into cancer care and support organisations, NGOs and partner us. We can’t do it alone. They should partner us so we can change the narrative.