Satyanarayan Kolan has been twice affected by multiple myeloma, the second most common blood cancer. Learn about the challenges in diagnosis in a small town in Andhra Pradesh and how a support group can provide immense solace.
The year was 2005. I was 28 years old. Before starting my career in law, I had come to my home town in Nalgonda, Andhra Pradesh for a summer vacation. One fine morning when going to the market on my scooter, I had to negotiate a sharp right turn. As I swerved, I felt a shooting pain in my spine. It was so severe that I collapsed on the road. I couldn’t move at all. My family was informed and they carried me home.
I was admitted to a nearby hospital where I was diagnosed with an orthopaedic problem. I was started on pain killer injections and, after a few days, when there was no improvement, a local village Baba was also summoned to bless me. I was forced to be at home for the next two months surviving on injections and occult powers.
Finally, my friend's brother insisted that I move to the nearby larger town, Guntur. There, at first I was detected with tuberculosis, and then I was told I had some kidney problem and it would be best I got treated in Mumbai.
Getting the right diagnosis
Four months after the bike incident, I was shifted to Mumbai on stretcher in a train. As one of my friends was working as a lecturer at KEM Hospital, I was taken there and admitted in orthopaedic department. When the blood test was done, my creatinine level was dangerously high. It was around 11 or 12. Normal levels of creatinine in the blood are approximately 0.6 to 1.2 milligrams (mg) per deciliter (dL) in adult males. My doctor friend and other attending doctors, were shocked to see that I was still conscious and not in coma. When creatinine level goes above 6, they informed, chances of a person going in coma is very high. So, I was immediately shifted to the ICU and put on kidney dialysis.
Doctors in Guntur were told that due to my elevated creatinine levels I might live only for another 20 days. This really frightened my friends. While waiting outside the ICU they even went to the extent of discussing my last rites, funeral and where should it be held – in Bombay or native place?
As I was going to die soon, I became a veritable guinea pig at the hospital. All possible tests were being done to get to unearth my problem. I had to even undergo the HIV test. But they were all negative. A few days later, Dr S Chandrakala, came to ICU and took my bone marrow aspiration. At that time she was the resident doctor, now head of haematology department.
No mention of cancer
The bone marrow tests revealed that that I had Multiple Myeloma. My blood sample was sent to Tata Memorial for confirmation. Once multiple myeloma was established, I was shifted to the haematology department, and my treatment was started. At that time one of the top hematologist Dr. Farah S Jijina was head of department at KEM.
I was started on chemotherapy cycles and later on thalidomide tablets. I was one of the first patients to have been administered the thalidomide tablets which essentially helps the immune system fight the multiple myeloma.
Oddly, through all of this I had no clue I had cancer. Neither the doctor nor my friends told me anything about it. I was under the impression that multiple myeloma was some kind of disease, but never thought it would be cancer. At times, I would be a little suspicious. I used to always ask the doctor, ‘Dr… chemotherapy is given to those who are suffering from cancer. Do I have cancer?’ But the doctors would brush aside my queries. In fact, even my files would not be kept next to me. I think my doctor friend had requested that I should not be told I had cancer.
After my chemo sessions stopped, I was discharged from KEM. In order to get back my strength, I started doing Vipassana Meditation, Yoga, pranayama and light exercises. I also started working. I got married in 2011. The use of internet was still not so popular; hence I was still in the dark about my cancer.
Relapse
In 2016, I had a relapse of multiple myeloma. By then I was already aware of the disease and understood that it was blood cancer. The symptoms had started with severe weakness and fatigue. I went for my MRI and blood tests, which confirmed my cancer. I was given a chemo injection almost every week for the whole year, and then put on tablets.
Myeloma Friends
In February 2017, I met a multiple myeloma support group. The support group is a part of Myeloma Friends Charitable Trust (MFCT) and endeavours to reach out to the Myeloma community – patients, survivors, caregivers, doctors and all those associated. I have great encouragement from them and their vision which is spelt out in the acronym EASE,
E - Education
A - Awareness
S - Support
E - Evaluation
I have benefitted immensely from joining the multiple myeloma support group because we get together and share experiences. When you meet a survivor who has successfully conquered myeloma, you feel inspired that you too can lead a healthy life.
The secret is to keep your mind engaged and positive.
