I used to think cancer was sickness for the rich—Colorectal cancer survivor, Tobiloba Oluwasina

Tobiloba Elizabeth Oluwasina is a colorectal cancer survivor who recently graduated from the Olabisi Onabanjo University (OOU). In this interview by ADERONKE ADESANYA, she speaks about the difficulties she faced during her undergraduate days with a colostomy bag.

What was the experience like discovering you had colorectal cancer?

At that time when I discovered that I had cancer, it was like my world was coming to an end, because I had never met anybody with that cancer sickness. It’s only on TV and American movies that I hear about cancer. I had never seen or heard of a Nigerian having cancer. This same cancer now happened to me. It was a lot. I used to think cancer was a sickness for the rich, that it’s only the wealthy who can afford its treatment. So, the thought of everything was overwhelming. It really broke me, my family, and everyone close to me. At that time, I did not even know what to think. I was numb. I cried a lot. I cried to the extent I couldn’t feel anything anymore. I would question myself, “Ah, shey, me? Cancer?” I couldn’t just wrap my head around the fact that I was diagnosed with a stage-three cancer. 

How did you feel when you discovered you were going to start using a colostomy bag?

When I was told that I would have colostomy, the doctors didn’t really explain what this colostomy was. They told me that they would do a surgery where I’ll be pooing from my stomach. They didn’t explain it to me that it’s not something so deep, that it’s something you can use. That it’s not something that will end your life. It gave me so much worry. I thought, “Oh, my God, I’ll be pooing from my stomach. How is that even possible?” and other weird thoughts. But along the line, I got used to it. It was not easy at first trying to adjust to something that wasn’t there before. Pooing from the stomach, changing bag from time to time. It wasn’t easy. Sometimes, when my bag will leak, the poo will be all over my body. It was hell. 

How did carrying a colostomy bag affect your daily life in school, and how did you manage to keep up with your studies?

I was not fully in school. I was not in school like my mates, going for lectures every time. It was only when I’m chanced to go to school, maybe when i was not taking chemotherapy or when have appointment with my doctors, that’s when I go to school. And that used to fall to probably when we want to have our exam. Like a week or two weeks to my exam, that’s when I used to go to school. So I would just read what I can read from other students and then do my exams. But, the short period that I was in school, I experienced a difficulties with my colostomy bag. Some of my lecturers knew about my health. Thank God they were good people. They understood, and they helped me. Some class assignments, attendance, and tests I was supposed to do they would tell me not to worry, that I should read what I can and do the exams. But it was not rosy.

Can you share some difficulties you faced in school while carrying a colostomy bag, and how did you overcome them?

I can recall my matriculation day. I was yet to know anybody in my department. So, I went with my mom from Ibadan. I wanted to go to see what’s going on because I didn’t resume with my classmates. They had already started classes. I was in Ibadan receiving treatment. On the matriculation day, I want to go, to see how it’s done, to snap pictures. So, we went even though I wasn’t yet used to the colostomy. I didn’t know that I was supposed to take extra colostomy bag, kit and everything with me. When we got there, I didn’t know anybody. I was just seated like someone who didn’t anything. I then noticed that I needed to flush poo out of my bag. I told my mother that I needed to use the faculty’s restroom.

When I got to the toilet, I opened my trouser, the poo was already on my stomach, on my trouser. Everything was messy. It was smelly. There was no toilet roll inside the toilet.  I just sat down there. I locked myself inside the toilet and started crying. While crying people were like, “Oh, some people want to use the toilet.” Thank God the door was locked. Then I started thinking, “What do I do? How do I come out of this place? My body will be smelling.” If I had perfume with me, I would spray it on myself, everywhere. But there was nothing. Luckily, there was water when i turned the tap, I used my hand to take the poo from my body, put it in the tap, and rinsed it several times. It was very messy but I was able to clean up myself.

When I got back to my mom, she said, “Your face has changed.” I cried, and I said, “Mommy, I just checked. Let’s go. My bag has leaked. My trousers has stained. She was sad too. So, we left. That was a very bad experience for me.

How did your friends and family react to your diagnosis, and did their support make a difference in your journey?

People have been super supportive since I started sharing my experience with colostomy bags. I’ve had people from the UK and US reaching out, offering to send me bags or even buying them for me and shipping them to Nigeria. Some don’t even know what a colostomy bags is, but they want to support me. I’ve never had to buy a colostomy bag with my own money since I started posting about it. I’ve actually got a stash now and I’ve been giving them out to people in need — people in Ife, Ibadan, Lagos, Kwara State Polytechnic… the list goes on.

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It’s not just about the bags, it’s the love and support that comes with it. People put me in their minds and send bags my way every six months or so. Some even check in to see what type of bags I use so that they can send the right ones. I’m blessed to have these people in my life, even if I don’t know them personally. 

Did you face any stigma using a colostomy bag, and what made you decide to speak publicly about your experience?

There was a day I was writing my exam and was seated next a female coursemate. As soon as we started writing, one lecturer, who I didn’t know, and who had probably heard stories about me, told the lady sitting beside me, “You’d better shift from that girl so she won’t inflict you with her disease”. He said it in Yoruba. The whole class shouted, “Ah, ah! Na wa o!”. His words really hurt me and I started crying. 

I decided to speak publicly when we were fundraising for my final treatment at LUTH, and it cost about six million. We had to solicit financial help online. My parents didn’t want us to post about my health. But we did, and it worked.

After that, I felt like my face was already out there, so why not share more? I started posting on TikTok, and the response was overwhelming. People encouraged me, and it gave me the courage to continue. I remember making a video with my colostomy bag on my phone and saving it for a year before posting it. When I did, it went viral, and people started reaching out. They would say, “I’m an ostomate too, but I didn’t know how to talk about it.” That was when I realised there are many Nigerians with colostomy who don’t talk about it. 

What’s your plan for raising awareness about colorectal cancer, especially among young Nigerians?

 A lot of Nigerians have colorectal cancer, and seeing people respond positively to my posts encouraged me to keep sharing. Now, my followers on TikTok, Instagram, and Facebook know what colostomy is, and that’s a big win for me. I’ve educated people, and I’m still doing it, letting them know it’s not the end of the world. You can go to school with the cancer — I’m proof of that. You can get married, have kids, travel, wear what you want, and be comfortable. I’ve got ostomate friends who are married with kids, and they are not even Nigerian. There is an 80-year-old ostomate I know who’s been living with it for 11 years. You can have a long, fulfilling life. That’s what I’m sharing on social media — awareness and hope. I want people to know about colostomy, to understand it, and to see that it’s okay. You can live your best life with a colostomy.

What do you think schools can do to better support students facing similar health challenges?

I believe there should be special privilege for people with health conditions, especially for students. I had a lecturer in 100 level who made me choose between school and health because his course required me to be always present in school and at this time, I was battling chemotherapy treatments and a lot. I feel like the school authorities should make sure there are special privileges for students with severe health conditions like kidney issues and cancer, etc. I had some lecturers that actually liked me and helped to make things easier for me. But it’s not everyone that is that lucky. Some people had to drop out of school because they couldn’t cope with how they were being treated. Of course, the institution will do their findings to ensure students aren’t lying, but these conditions should come with special privileges still.

What’s your message to other young people who might be going through a tough time, like you did?

My message to other young people who might be going through a tough time is to take it one step at a time. Always make yourself happy. It’s a lot to take in and handle — I was only able to do this with the help of God and my nuclear family — but you’ll be fine if you take it one step at a time and take a lot of preventive measures. When I was going through cancer, of course, people were bringing a lot of stuff for me to use, telling me not to depend on doctors, but I ignored it and called on God and also didn’t do anything my doctor didn’t recommend. Make your doctor your best friend. Tell him everything. Be happy, be courageous. Don’t think about death. I’ve a slogan that goes thus: The colostomy is a victory scar. The way soldiers go to war and come back victorious with scars is the way I treat my colostomy. It is my victory scar.

How has your experience with cancer impacted your perspective on life and your future goals?

Life’s a rollercoaster, and cancer’s shown me that nothing’s guaranteed. I’ve seen wealthy people in hospitals — sick and lifeless — with terminal diseases. It hits you. You can fall sick or die anytime. It’s changed my perspective on life, and how I do things.

Before cancer, my goal was to finish school, get a job, and travel. Now, I still want to travel, especially since living with a colostomy in Nigeria is tough. I’ve seen ostomates abroad getting free bags and support. It’s a different world. Here, it’s a struggle, and people aren’t always understanding. I’ve lost relationships because of my condition. Guys I would date would ghost me after learning about my cancer and colostomy. But I’m holding out hope that the right one will come along.

Looking back, what advice would you give to your younger self when you were first diagnosed with colorectal cancer?

The advice I would give my younger self is to have faith. Just have faith. I had this unshakeable belief that this sickness couldn’t kill me, even when things were tough. I don’t know where it came from, but I knew I had gotten through it. It wasn’t easy, though. There was a time I thought the chemotherapy wasn’t working. I was in pain, traumatized, and stuck. But I held onto faith, knowing this thing wouldn’t take me down.

My faith is rooted in God. I put Him first. He said he’ll show mercy and compassion to those He chooses. And He showed that for me. So, I would say just have faith, be close to God, and trust that everything will work out. Have faith.