A few days after my twentieth birthday, I was diagnosed with cancer of the bone, which is known as osteosarcoma. The disease was tough on me, but what came after recovery was not easier. It all began when I was in the final year of high school. I had high fever, felt dizzy and fatigued and was diagnosed with mild anaemia. The medication worked and soon I finished school. I wanted to study law, so in 2008, I applied and was accepted at the University of Curtin in Australia.
I was in the process of getting my travel documents when I started having trouble with my left arm. I didn’t think much of it. When the pain persisted, I saw two doctors; the first said I had a sprain and the second said I had mild arthritis. Again, I didn’t think much of it. I was 19. I was getting ready to go abroad and my visa was ready.
My elder sister suggested I see an orthopaedic surgeon before I left. When I got there, the first thing he asked, even before examining me, was, “How are you still walking?” Apparently, I looked so pale. He ordered some urgent tests and asked me to return the following morning with my mother. I still wasn’t worried but during the tests, I realised I couldn’t raise my arm because of the pain. I could also see the doctor whispering questions to my mother. I think that’s the first time it occurred to me that something was wrong. For some reason, the thought of cancer crossed my mind. I started thinking people who have cancer don’t survive and felt like I was in a movie.
After the tests, my father and sister were called to the hospital and with my mother they met the doctor for hours. No one was telling me anything. I am still so young, there is so much I haven’t done and now I am going to die, I thought. When they called me in, I could see from the look on their faces that things were bad. I could also tell that they were trying to protect me because I was a ‘child’. The doctor revealed that they suspected I had cancer, but to be sure they had to perform a biopsy.
I was to be admitted the following day but when we got home, I was in so much pain. I collapsed and was rushed back to hospital. It was the first time I saw my father cry. Eventually, they told me I had advanced stage osteosarcoma in my proximal humerus (by the shoulder blade and upper arm). They also said they might have to amputate it.
Meanwhile, my visa to Australia was cancelled. My family shifted their focus to finding a hospital in India. I had two chemotherapy sessions in Kenya. Chemo felt like I was in hell for a few hours. The next few days saw me in and out of hospital. In fact my visa to India was processed from a hospital bed. The doctors in India confirmed the diagnosis. They put me on a treatment known as high dose methotrexate. This particular drug was extremely strong. One dose takes seven days and I was on it for 24 hours. Normally people finish that dose and are taken to the ICU. But I took to it well that even the doctors were amazed.
Soon I started walking around the cancer ward and meeting other patients. I also started watching some die. I wondered if I would be next. I was scared that if I closed my eyes, I would not wake up. So I stayed awake. I went through chemo for three months after which the cancer cells had lodged in such a way that they could operate. They removed the bone, muscle and tissue around the proximal humerus. The bone was replaced with titanium. I was eventually declared 99 per cent clear of cancer. The doctors wanted me to stay there for post-cancer care but we wanted to come back home.
But the Kenyan doctor I was referred to didn’t follow the Indian doctors’ course of treatment. By the third round I was so sick that I had wounds in my stomach. I couldn’t eat. I dropped to 24 kilos (I had left India at 60kg). My eyes and ribs were sunken. I was in so much pain that this time I was sure I was going to die. I even asked my mom to call the priest to give me the anointing of the sick. But the cancer hadn’t come back. I was just being given the wrong treatment.
My family decided to take me back to India. This is when guilt kicked in. My parents had already spent so much money on me yet they had my younger siblings to take care. I was also wondering why God was keeping me alive when some of the friends I had met in my recovery journey had died.
When we got back to India, the doctors stabilised me in a week, I gained weight and my hair grew.
I was put on remission and we came back home in November of 2009. Since then, I have to go for a check-up once every year. By the time this whole ordeal was done, I was 22 years old. I felt like that was too old to pursue a course like law, so I applied for shorter course in International Business and Marketing at USIU.
I am grateful I survived. But at the same time, I had a lot of stuff going on the inside. First, when people found out I was a cancer survivor, they asked me to talk to their sick relatives. But when the relatives succumbed, I would get the feeling that they were asking; why did you survive and my loved one didn’t? I was also losing a lot of the people I had met who had cancer and would wonder what it is that I had done that they hadn’t. Second, I lost my friends. One thing you realise when you have a long illness is that people get tired and they stop being there and you are left with your family only. Third, I would go to the paediatric cancer ward in Kenyatta National Hospital and just look at those children. I felt like because I had survived, I was responsible for doing something for them.
The other thing is that people don’t know what’s going on inside you. They say, “It’s a miracle!” but they don’t stop to think about how the person who survived is coping with the trauma of a long illness. I struggled (and I still do) with insomnia. Soon, I started drinking to cope with these things.
I graduated in 2013. In 2014, my drinking was getting out of hand. I needed to be numb. I didn’t want to deal with the emotions of what had happened. You would think it is self-pity, but it is actually post-traumatic stress. But I got to a point where I saw that if I continued with self-destruction, alcohol was actually going to kill me. I didn’t want to die. Maybe I wanted to feel pain. I was punishing myself because I had been lucky enough to survive cancer and others hadn’t, because my family had done so much for me. In 2016, I checked into rehab. I have been sober for a little over one year now.
I still worry about whether the cancer will come back. I don’t think it ever goes away, but every day that attitude is changing and I am grateful for surviving.
Although I have done a lot of physiotherapy, I am limited as to what I can do. I can’t lift it or exercise because I don’t have muscle tissue but I am glad that I have an arm. I was resentful at life and God because I felt I had lost two years of my life.
Now, I feel like I have lived so much for a 29-year-old. I feel like a responsible person who people can count on. After I got sober, I secured a job at a bank where I work in the marketing department, and I really enjoy it. In the long run, I would want to open a rehab and a cancer foundation. I am a cancer survivor, still living nine years later, and now I am a recovering alcoholic.
Facebook: Gillian Mutinda