How Colon Cancer Changed My Life
My name is Tumi Ramasodi, I was 45 years old when I was diagnosed with Stage 3B colon cancer in 2020.
I initially suffered from constipation, diarrhea, and ulcers and was finally diagnosed by my doctor with irritable bowel syndrome (IBS) and ulcers. As time went on, I started having abdominal pain, that never went away. I started becoming uncomfortable and pushed for a second opinion, which is when I went to see a specialist.
I gave him all my symptoms and then he asked, “are you losing weight?” At that moment I realised that I was losing weight, but I did not attribute it to anything serious. I didn’t think it was a symptom, in fact, I was excited to see myself shedding weight without trying. I didn’t realise that it was something that I should have been aware of and taken seriously. That’s when the doctor suggested we do a colonoscopy.
I saw the specialist in June, and, due to financial reasons, the colonoscopy was done in August. My medical aid required me to pay extra for the scope, but I could not afford it. As God would have it, a friend of mine offered to pay the extra amount for me so that I could have the colonoscopy earlier, and that’s when I was diagnosed.
I was diagnosed on the 5th of September and the next week, on the 12th of September, I had surgery to remove the tumour. I started chemotherapy on the 5th of October and had 12 rounds of FOLFOX. I didn’t go for radiation.
At first, I was in shock. I thought, “Me? Cancer?” It was never a thought. And it was not a thought because we don’t speak much about colon cancer in our communities. I actually didn’t know much about colon cancer.
To be honest, I thought I was dying. I thought that was my end and I didn’t know that there was treatment available, and that treatment can work. I remember, before I started chemotherapy, I was scared. The Oncologist mentioned, just when I was recovering from surgery, that I would undergo chemotherapy. Until then, I believed that they would just remove the tumour and I’d be fine, because for me, chemotherapy was a big word.
While waiting for chemotherapy, I remember how uncertain I was. I felt like I needed somebody to sit down with me and explain this process to me. I remember, personally, approaching my Oncologist and asking for an appointment and he was surprised. He said, “You’re only starting chemo on the 5th” and I said, “That’s exactly the point. I’m starting chemo, but what is chemo? What does chemo mean to me? What’s going to happen to my body during chemo? Will I survive chemo?” And he was taken aback. He seemed to interpret my fear as anger. But I was scared, and I needed someone to prepare me because, whether I liked it or not, I had to go through it. It was then that he gave me information about the chemotherapy – that I would be getting FOLFOX, and all the changes that my body would go through.
I remember how I felt after every session. It took a toll on me – I was tired, extremely tired. I was nauseous, a lot. I lost weight which made me refuse to look at myself in the mirror because I looked so thin and I wondered what people were thinking when they saw me because I looked so different.
The thing that hurt me most during my chemotherapy process was seeing my loved ones and seeing the fear in their eyes. I felt like my family was more scared than I was and, at the time, I adopted an attitude of strength. I felt I needed to give them a face of strength. I needed to show them that I’m carrying this and I’m doing this well. I knew that my body was tired, but I couldn’t tell them because I knew just how scared they were. I could see it in their faces. I didn’t want them to lose hope because I didn’t want to lose hope. If they had lost hope, I would have lost hope too.
That was my journey, I just had to go through it with a smile. I think the one thing that propelled me and kept me grounded was my faith in God. It was as if God gave me confirmation that, “I’m here and you’re going to go through this.”
I did just that and I can say that my son, my family and I survived this. We are all survivors.
In a state of anxiety and confusion about diagnosis and treatment, I started doing a lot of research about colon cancer, and I wanted to find survivors. I wanted to see someone that had survived. I needed somebody to walk this journey with me, and reassure me, “You will survive this.” I remember bargaining with God at the time, saying, “If you save me, this is what I would do for colon cancer patients.”
Through my curiosity and trying to search for survivors, my search landed me on the Global Colon Cancer Association GCCA) page. I connected with a lot of survivors internationally, because locally people don’t share their stories, and I found lots of information on the GCCA website. One day they had a post about the impact that they make in different parts of the world, and I commented on it.
They followed through with me directly and I shared my story with them. They became such a strong support structure for me. My work with GCCA is to ensure that we reach colorectal cancer patients in the grassroots of African communities because where you live should not determine whether you can prevent or survive colorectal cancer.
I spoke openly about my cancer journey, and I found people connecting me with colon cancer patients, especially newly diagnosed patients. My oncology clinic also referred newly diagnosed young patients to me so that I speak to them. I realised then that I was doing exactly what I needed back when I was first diagnosed. I gave these patients the one thing that I found was lacking in the medical space for cancer patients, care.
I simply walked the journey with these patients and their families, talking to them, answering their questions, and giving them that soft understanding of where they are simply because I had been there myself. I believe patients need to speak to someone who has been there, someone who has survived this journey, to give them hope.
I reached out to the National Cancer Registry after telling my story at an NHLS Wellness Day. The support I get from Dr Mazvita, the head of the unit is immense. She linked me up with CANSA. I connected to the head of advocacy, Zodwa Sithole. She embraced me and helped me navigate this new journey to fulfilling my mission. She made patient advocacy make sense to me. A new phase that seemed scary and uncertain, but her warm embrace made it easy.
Survival is not “cute” and cancer has completely changed my life. People look at me and think I carry everything so well, but they don’t understand how cancer will always be a part of me, even though I am cancer-free. My body will never be the same again. Daily, I go through physical challenges caused by cancer. My lifestyle has changed. Emotionally, I only survive through prayer and my faith in God. I am grateful for my second chance in life and the fact that I can positively impact people’s lives.
