GCCA in Southern Africa
Tumi Ramasodi, Regional Director for Southern Africa, shares her experience with colorectal cancer and her dedicated patient advocacy work.
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My name is Tumi Ramasodi and I was 45 years old when I was diagnosed with colon cancer in 2020.
Tumi Ramasodi
Regional Director for
Southern Africa
Southern Africa
My Symptoms
So initially, I suffered from constipation and diarrhea, but also ulcers. My doctor diagnosed me as having ulcers and IBS (irritable bowel syndrome). But as time went on, I started having abdominal pains that never went away. And I just got uncomfortable and I pushed for a second opinion. That is when I went to see a specialist.
I gave him all my symptoms and then he said, “Are you losing weight?” And at that moment I realized that I was losing weight, but I did not attribute that to anything serious. I didn’t think it was a symptom. In fact, I was excited to just see myself shedding weight without trying. I didn't realize that that was something that I should have been aware of and taken seriously. That's when the doctor suggested we do a colonoscopy.
I gave him all my symptoms and then he said, “Are you losing weight?” And at that moment I realized that I was losing weight, but I did not attribute that to anything serious. I didn’t think it was a symptom. In fact, I was excited to just see myself shedding weight without trying. I didn't realize that that was something that I should have been aware of and taken seriously. That's when the doctor suggested we do a colonoscopy.
My Diagnosis
The diagnosis process took about three months. I saw the specialist in June, and the colonoscopy was done in August. And the reason was financial. When the specialist requested funding from my medical insurance to do the colonoscopy, he said that I needed to pay in an amount of money that was a lot for me. I couldn't afford that because I was already paying medical insurance monthly. My plan was to do the colonoscopy in December of that year because I was hoping to get bonuses from work, and that's when I could afford it. But as God would have it, a friend of mine offered to pay that medical aid gap for me to be able to do the colonoscopy earlier, and that's when I was diagnosed.
At first, I was in shock. I thought, “Me? Cancer?” It was never a thought, even when I was battling with abdominal problems, ulcers, IBS, and all of that. Cancer was not a thought. And it was not a thought because we don't speak much about colon cancer in our communities. I didn’t know much about colon cancer. I just knew it had something to do with the stomach. That's all I knew.
I was in disbelief. What I know now is different, but I had always thought colon cancer only affected the white community and people of a certain age. I thought, “I'm young and I'm Black, why would I have colon cancer?” To be honest, I thought I was dying. I thought that was my end. I didn't know that there’s treatment and treatment works.
I was in disbelief. What I know now is different, but I had always thought colon cancer only affected the white community and people of a certain age. I thought, “I'm young and I'm Black, why would I have colon cancer?” To be honest, I thought I was dying. I thought that was my end. I didn't know that there’s treatment and treatment works.
I was diagnosed
on the 5th of September.
I was told I had colon cancer.
From 1990 to 2019, global colorectal cancer cases in people under age 50 more than doubled from around 95,000 to more than 225,000.
Learn more about early-onset colorectal cancer
My Treatment
I was diagnosed on the 5th of September and the next week, on the 12th of September, I had surgery to remove the tumor. I started chemo on the 5th of October had 12 rounds of chemotherapy with FOLFOX. I didn't do radiation. Since treatment ended, I do blood tests every three months, CT scans every six months, and colonoscopy every year to monitor for cancer recurrence.
I remember before I started chemo, I was in fear. The oncologist mentioned, just when I was recovering from surgery, that I would go through chemo. Until then, I believed that they would just remove the tumor and I'd be fine, because for me, chemotherapy was a big word.
I had seen pictures on TV and in the media of people having chemotherapy, and I couldn't imagine myself going through that. And while waiting for chemo, I remember just 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 kind of 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? What is this?” And he was taken aback. He seemed to interpret my fear as anger.
But I was scared. I needed someone to prepare me because, whether I liked it or not, I had to go through this process. And that is when he gave me information about the chemo that I would be doing, FOLFOX, and all the changes that my body would go through.
I remember before I started chemo, I was in fear. The oncologist mentioned, just when I was recovering from surgery, that I would go through chemo. Until then, I believed that they would just remove the tumor and I'd be fine, because for me, chemotherapy was a big word.
I had seen pictures on TV and in the media of people having chemotherapy, and I couldn't imagine myself going through that. And while waiting for chemo, I remember just 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 kind of 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? What is this?” And he was taken aback. He seemed to interpret my fear as anger.
But I was scared. I needed someone to prepare me because, whether I liked it or not, I had to go through this process. And that is when he gave me information about the chemo that I would be doing, FOLFOX, and all the changes that my body would go through.
Colonoscopy
A diagnostic and screening procedure.
A diagnostic and screening procedure.
Learn more about cancer screening
Surgery
How is colorectal cancer surgery performed?
How is colorectal cancer surgery performed?
Learn more about surgery
Chemotherapy
How is chemo used for colorectal cancer?
How is chemo used for colorectal cancer?
Learn more about chemotherapy
I remember just how I felt after every chemo session. It took a toll on me. I was tired, extremely tired. I was nauseous a lot. I lost a lot of weight and I refused 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 chemo 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 the hope, I would have lost hope too.
That was my journey, I just had to go through it with a smile. And I think the one thing that really propelled me and that 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.”
The thing that hurt me most during my chemo 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 the hope, I would have lost hope too.
That was my journey, I just had to go through it with a smile. And I think the one thing that really propelled me and that 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.”
And I did just that. I can say that my son and my family and I survived this. We are all survivors.
My Inspiration
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 that journey with me, and reassure me, “You will survive this.” And I remember bargaining with God at the time, saying, “If you save me, this is what I would do for colon cancer patients.”
My Work
Through my curiosity and trying to search for survivors, my search landed me on the Global Colon Cancer Association page. I connected with a lot of survivors internationally and found lots of information on the Global Colon Cancer Association website. One day they had a post about the impact that they make in different parts of the world. I responded by saying.
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 for me to speak to them. I realized then that I was doing exactly what I needed back then when I was first diagnosed. I gave these patients the one thing that I found was lacking in the medical space for cancer patients, which is 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 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 for me to speak to them. I realized then that I was doing exactly what I needed back then when I was first diagnosed. I gave these patients the one thing that I found was lacking in the medical space for cancer patients, which is 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.
Listen to Tumi on the Radio
Hear Tumi Ramasodi discuss her journey with colorectal cancer, from symptoms and diagnosis to treatment and advocacy work, in this insightful radio show interview.
Tumi's Journey with COLORECTAL CANCER
#UnlockedChats
https://globalcoloncancerassociation.sharepoint.com/:u:/s/DesignAssets/EZOMuQGUZDVNpklOY9OW3v8B5VMvMh1NpBm1UPo8-eBNYg?download=1
Survivorship
Survival is not “cute”, 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.