Abigail Simon-Hart, Co-founder of BRICON Foundation, had a double mastectomy in 2014 after she was diagnosed with cancer of the breast. In this interview with Mary Ekah, she talked about the joy of being cancer-free and how she has lived a very fulfilling life despite all the odds
The World Cancer Day is billed for February 4, what plans do you have to further spread the word about prevention of the disease?
BRICON Foundation started out in 2016. It was set up to help people who have already been diagnosed with cancer. We are slightly different from most NGOs in that our focus is not on screening even though we do promote screening for early detection. Our focus is on people who have already been diagnosed with the disease. We support the patients as well as their families.
For World Cancer Day itself, we have decided to focus on our Help for Husbands (H4H) group and how to support the husbands who are taking care of children and to ensure that the children remain in school. So for the World Cancer Day we have launched out our Keeping Kids in School Initiative (KKIS) and that is making sure that the kids of cancer patients remain in school and are not being held back at home just because their parents can’t afford school fees. So as part of the World Cancer Day celebration, we are covering school fees for 14 of our beneficiaries at various stages of their education. We think that is really important so that their second generation does not suffer as a result of a parent having a cancer.
Yes, World Cancer Day is fantastic but people with cancer live with cancer every day, so we can’t just focus on cancer only on World Cancer Day. We have to understand that cancer is every day for someone who has cancer. They live with the cancer every day. When cancer day comes we make a lot of noise but in-between everybody forgets us who have cancer. So it is really important that though World Cancer Day is an amazing opportunity for a global proclamation about the importance of awareness of cancer but we have to remember that outside February 4, there are people who are going to be living with cancers before that date and are still going to be dealing with their cancers after that date.
What in the first place informed your decision to establish BRICON, an organisation that focuses on breast cancer?
My mother died of cancer in 2013 that was after having heart cancer four times previously. She actually lived for 33 years after the last time they told her she was going to die and then she got sick and died so quickly. She was dead within six weeks of the last diagnosis. Six months after she died I was diagnosed with cancer myself. I had barely got over losing my mother when I was diagnosed with cancer (of the breast) myself. And because my mother had cancer, I was very much aware of the disease. I went for regular mammograms and so we caught the cancer very early. Thankfully because we caught the cancer very early, I had options. I didn’t require radiotherapy because we caught the cancer early. I had surgery and was placed on medication and four years after, I am still cancer free. When I got back from treatment abroad, I sat down and thought over it – supposing I didn’t have access to insurance or funds, how would my cancer journey have been in Nigeria. And we now decided to look at the cancer journey. BRICON’s co-founder, Dr. Niyi Adekeye’s father died of prostate cancer. And so between the two of us, we decided to do something different and that there was no point having lost family members and I having conquered cancer, and we do not in some way contribute in making things better for cancer patients. If I cannot use my own suffering or he use his own suffering in helping people who are going through similar things, then it is almost like the experience was wasted. And that is why we decided to be slightly different and focus on those who are already diagnosed with cancer. There are enough NGOs doing screening but after screening what happens. Who covers the cost of treatment? We knew there was a gap and so we decided to fill that gap by establishing BRICON Foundation.
Do you do any other job aside running the foundation?
We actually run a consulting firm called Bricon Global Consult Limited. That is the main business that we do. I am actually the managing partner. We provide Health Care Advisory and support services for companies and individuals. And because we have already been in healthcare s0pace for quite a while, it was a natural kind of transition to set up an NGO as well. And the whole purpose of setting up the NGO was that we would have a non-profit outfit totally separate from the profit making outfit so that we would have a foundation that is 100 per cent charity while we continue with our normal consulting business.
As someone who survived cancer, can you talk about what it is like to go through that phase in life, especially the emotional aspect?
Cancer is devastating in the sense that you suddenly become very aware of your mortality and also aware of the fact that there is the possibility that you are going to die. So a lot of people who suffer cancer live in fear. But the truth is that some people died yesterday who did not have cancer and people will still die tomorrow even though they do not have cancer. So we need to stop focusing on dying and start focusing on living. Live your life the best way you can. As long as you have life, enjoy it because you may be worrying about death and yet live for another 10 years meanwhile you were worrying about death and lived 19 miserable years instead of living 10 happy years.
Another thing with cancer is that it ruins a family financially. It is so expensive to treat. And there are the financial implications of cancer where many people have sold all they had in order to cure cancer. We have seen people whose husbands abandoned them at the hospitals and families turned their back on them as soon as they heard they had cancer. There is a stigma attached to cancer patients. So cancer is such a heavy-duty disease in that apart from the emotional implications, there is the financial implications that are far-reaching. It is so bad that when you mention the word cancer, the first thing that comes to mind is death, misery, suffering and financial ruin. So cancer does not just affect the person who has the disease but affects every member of the family.
But my experience of suffering cancer is a bit strange because my mother had cancer when I was quite young so I had grown hearing about cancer quite a lot – witnessing my mother’s radiotherapy and chemotherapy, so I was already familiar with the whole cancer arrangement. And also because my mother was a survivor and she refused to accept it when she was told she was going to die and she beat cancer for 33 years, it meant my own cancer experience was not necessarily 100 per cent negative. And because my mother also had breast cancer, I was going to regular mammograms with her so it meant I was already fully aware of cancer and I was also very aware of the fact that if the cancer was detected early, I will be able to beat it. Although when I first got diagnosed, I felt bad and I quickly decided that if my breasts were going to kill me, I will quickly take them off and so I did just that. So I had a double mastectomy, started my treatment and got on with it. I didn’t allow it to hold me back. I refused to let people come around me and cry. I needed to be surrounded by positive people, so I didn’t allow negativity around me, so I surrounded myself with positive people and things. And that’s how ultimately I was able to cope. I refused to go down the road of negativity. Though there were days I cried and got upset but I didn’t allow that to get at me because I needed to fight the disease and do everything I can do to live and the rest were in God‘s hands. My faith is key to my being able to cope with having breast cancer. In fact, I know that everything has a purpose. I honestly believe that my life was spared for me to set up this foundation. We are able to touch lives now because I had cancer and also because one of our parents died of cancer. Because we have had that experience it has equipped us to be able to understand the sufferings of the families as well as the cancers patients themselves.
How did your husband take the news that you had cancer of the breasts and that you were actually going to remove your breasts permanently?
My husband and I knew each other from when we were quite young and we both already had awareness about cancer in the family. He knew my mother had cancer and that she also died of cancer, so cancer was what we spoke about freely in the home before it happened to me. My children, I have two amazing sons, were very much aware of cancer and they were fully involved in my recovery. So it was never an issue. Life has always been the most important thing so it has not in any way affected anything.
Cancer comes with trauma, stigma and burdens, especially for women that have to do a double mastectomy like you did. What will be your advice to those suffering in one way or the other as a result of cancer?
First of all, the decision to live or die is yours. That’s what I came to realise. My position has always been, if your breasts are going to kill you, take them off and that was what I did. My position was, anybody that was going to care about me will care about me without my breasts. If removing my breasts increases the chance of my life, for me it is not debatable. And we are in a country where we don’t have support structure for treatment of cancer, so by leaving your breasts, you are making it more difficult to cure the cancer. We have heard people who say, if I remove my breasts my husband will leave me and I always told these women that if you die, your husband is going to move on. And if your breasts are what is holding your marriage together, then your problem is bigger than cancer. So it has to be life first. Having breasts does not define me as a woman. If I don’t tell you that I had a mastectomy, there is no way you would know. Womanhood is so much more than having breasts. Womanhood is internal; it is how you behave to other people.
What are your roles in the society? How are you celebrating life? What kind of example are you setting? And how are you impacting other women? Breasts are peripheral. And what is the point of going to the grave with my breasts intact, when I could have removed my breasts and lived a fulfilled life? So the first issue has to be curing the cancer first. Then you can start worrying about the breasts or no breasts. When you have cured the cancer, you can then talk about other options like artificial breasts or breasts reconstruction.
Cancer is not a death sentence. I honestly think that it is possible to live a long and fulfilling life even if you have a stage 4 cancer. It is all about the quality of life you live and not necessarily the length of life. So my message for those who have cancer is stop focusing on dying and fear of dying and start focusing on living. Live your life the best way you can and then the rest is up to God.
Breast cancer is the highest female cancer in Nigeria. Why has the prevalence continued to go up?
Well, the thing with breast cancer is that we are not so sure whether breast cancer incidence has increased because there is more awareness now, so people are actually going out and getting screened and there is a lot more information or whether it is because we have changed our lifestyle. You know we have become Westernised these days, so we are eating lot of processed food, we are not getting enough exercise, and we are getting too obese. We are not living healthy lives but living under high stress. We are drinking alcohol now and we are smoking more. These are all of the things that actually contribute to people having cancer. So I think that between the change in lifestyle, and the greater awareness of the disease, we are getting higher figures, so we are not sure whether it is I00 per cent really increasing because of the change in lifestyle or whether it is because in addition to lifestyle changes there is also more awareness now that is making us have more statistics.
What is your organisation doing to address breast cancer issues in the country?
We run support group for women who have cancer and another support group for husbands whose wives have cancer. In our women’s group we do a lot of awareness about the disease. We talk about chemotherapy, radiotherapy, surgery, diet, that is the importance of nutrition if you have cancer and even talk about other forms of cancers. For instance, we talked about cervical cancer during a seminar we just held because just because you have breast cancer does not mean that you don’t have a risk of getting cervical cancer, so we try as much as possible to inform. We have also partnered with Macmillan Cancer Support UK which is one of the oldest cancer organisations in the UK. They produce a lot of educational materials, so we are actually in partnership with them to reproduce some of the materials in Nigeria.
What categories of women are more prone to breast cancer?
You would be shocked that cancer is no respecter of any persons – whether you are rich or poor, whether you are young or old, Christian or Muslim, traditionalist or a pagan, it does not discriminate. And you would be shocked that educated people have cancers but out of fear or ignorance will not follow up on it. So cancer is not necessarily dedicated to any particular income group per say , although you find that in the poorer income group, because of lack of funds and education, they tend to come later but we have seen some women who are quite well to do, who are supposedly educated presented with stage 4 cancer. Another challenge we have is faith healers in the sense that a lot of people are diagnosed early but they would have gone to all the prayer houses et al the native doctors for solutions before they eventually come to us for medical help by which time it would have been too late. We are not saying do not go to church but we are saying, complement your medical treatment with prayer and your faith but do not substitute. If you are asking God for help, do not tell Him how to do His job. Let Him chose how He wants to heal you.
What are the unique features of breast cancer? How would one know they are developing a cancerous lump in their breast?
Breast cancer manifests in different ways depending on the kind of cancer but generally speaking, any kind of change you noticed on your breasts, you need to flag it. The most common sign of breast cancer is a breast lump. Others signs are the nipple inverts. The nipples which were normally sticking out would now go in. You may have rashes on your skin or the skin resembles the skin of an orange or you may notice that one breast is bigger than the other but the most common is breast lump. When you touch your breasts and you now notice that there is a lump or a feeling of a mass that was not there before, check it – but not all breast cancers necessarily have lumps even though that is one of the commonest signs of having something wrong with your breast. So it is really important that women, just after each menstrual period should examine their breasts get familiar with your breasts, so that when you notice any changes on your breast whether it is a lump or not, you need to get it checked. It is so important with breast cancer that you get it early. Once you notice it early, it is cheaper and easier to treat.
Nigeria has about two million cancer patients and yet there is huge limitation in terms of availability of facilities and equipment for treatment with only a couple of radiotherapy machines. What is the way forward?
I understand that we have eight radiotherapy machines and at any point in time only two are working. It is understood that in Nigeria we have about two million cancer patients, with approximately 65 per cent of patients needing radiotherapy and yet you only have two machines working, sometimes we are lucky four work, if you do your mathematics very well, it means that really, we don’t have facilities at all to cope with the sheer volume of cancer patients.
Now, tell us the peculiar challenges you face in Nigeria in trying to tackle the issue of breast cancer?
The challenges we are facing is number one, we do not have enough oncologists and qualified personnel. I understand that we have just over 60 oncologists and not enough nurses who are trained in oncology. Then there is the challenge of the availability of medication because it’s not just the mediation is expensive but the availability. For example, sometimes we need medications for our beneficiaries but they are not available. Then the radiotherapy machines are not working because many of them are almost obsolete. We need to do something about it. We have a challenge where we keep on screening and screening in this country but when you finish getting these cancer patients, you don’t have the facility or the professional competence to deal with the cancer. You ought to be able to screen and treat and not just screening and generating more patients that our current infrastructure cannot even cope with and yet every year we keep on doing more screening. Yes, screenings is fantastic and praise the Lord for early detection. What happen to the ones detected earlier? Where do they get treated? These are the challenges. So we really need to work on increasing the amount of facilities and the competencies of the medical personnel to deal with it because if we have a machine and you don’t have a competent medical personnel, it is as good as having nothing. We need people who can interpret results, we need people who have the ability to be able to handle the patients appropriately and provide the supports needed for the families as well.
So what is the way forward?
Investment is the way forward – Investment in training of medical professionals, investment in equipment and facilities; legislation that enables people with cancer to get treated at a subsidized cost because at the moment cancer is a very expensive disease to treat. So if you don’t have some form of insurance or some form of financial assistance for patients, they are as good as dead. And the further advanced the cancer is the more difficult it is to treat.
You did mention that cancer treatment in Nigeria is still not for the poor. How should the poor seek help?
One of the things that our foundation does is to provide support for people who cannot afford treatment but we work with the teaching hospitals. People don’t come to us off the streets and if they do, we refer them back to the teaching hospitals where they would be assessed by a consultant who would write a medical report explaining their case, the stage of cancer and what need to be done and the approximate cost. Once we have that, we now know what we can do to assist. So we do assist financially with patients’ treatments; we also provide Prostheses, that is artificial breasts and bras, thanks to a donor In the UK. We provide emotional support as well because some people can afford the treatment but lack who to talk to. So emotional support is very important not just for the cancer patients but for the care giver and that is why we set up our help for husbands’ project where we support men whose wives either died of cancer or are battling with cancer.
How do you get funds to assist these cancer patients?
All our funds are raised by donations and events. We have been just fortunate that we have quite a few individuals and corporate donors who have kindly donated towards our patients’ treatments and quite recently, one of our donors in the UK provided funds that is enabling us to pay for school fees of children of women who have died of cancer. We find out that husbands had emptied their pockets for payment of cancers treatments while the children stay back from schools due to lack of funds so that the children not only lose their mothers but are also losing their education as well. So we have been able to pay school fees for some of the beneficiaries of our foundation so that the children will remain in school, and can also grow up and not being so affected by the fact that they lost their mothers. Of course we are always looking for more donors to be able to help more patients
What qualifies those who are your beneficiaries?
We have some basic criteria that we look at like your income, the stage of cancer to decide on what we can do because for patients who are already dying of cancer, in most cases it is not chemotherapy that you are paying for but you are actually paying for them to have a comfortable and pain free death. And unfortunately, we have found that a lot of the cases that we have seen are stage 3 and 4. People are not coming early enough that you can do something tangible. The interesting thing about stage 3 and 4 does not mean you are going to die tomorrow, it simply means the cancer cannot be cured but you can live with it. People in Europe are living with stage 4 cancer for 15 to 25 years because they have the facilities. Everything is about having the medical competence and infrastructure to be able to ensure that people who have cancer can live long and quality lives in spite of the fact that the cancer will ultimately take their lives.
What is your advice to people in terms of preventing cancer?
Women need to check their breasts regularly. We are seeing breast cancer in women as young as 25. So it is important as a woman you learn to know your breast and if you notice anything slightly different, go and check it fast because prevention is a lot cheaper than cure. Then we need to start watching our lifestyle. We need to start eating healthy food. Stay away from processed things and stop drinking sugary drinks and eat lots of vegetables. We should also do a lot of exercise. And if you know that you have a family history of cancer that should make you more aware of the need to check yourself. So it is really all about early detection and information.