Rajat Subhra Biswas, 56 years old from Kolkata has lived with multiple myeloma and has even gone through a BMT surgery. He talks about his journey.
I was diagnosed with multiple myeloma in September 2018. I am currently in remission.
What were the early symptoms?
I was experiencing gradual loss of renal function, my creatinine level was steadily increasing alongwith increased leakage of protein in urine. Further, I was experiencing extreme fatigue and regular pigmentation on the skin especially on the forehead and in the legs.
Is there any history of any blood disorder in your family?
No.
What is your present condition?
I am presently undergoing maintenance therapy where I get a monthly dose of 2mg of Bortezomib which is administered sub-cutaneously and I am under stringent complete remission.
Please describe your experience of managing myeloma?
My experience of managing myeloma has been quite simple. I have religiously followed the advice of my doctors and have taken all the medications as and when they were prescribed. Managing myeloma for me was fortunately not very difficult due to the constant support of my close friends and my family.
Since I have to take regular Bortezomib injections, it sometimes leads to peripheral neuropathy wherein you sometimes feel numbness in your fingers and toes. As a result, my handwriting and my signatures vary at times. I have fortunately not faced any other complication.
Did you go for a BMT? Please tell us about it?
Yes, I did go for an autologous BMT in July 2019. From January 2019, I had undergone six cycles of chemotherapy during which every week I had to take Bortezomib injections along with other steroids. After six months, i.e., end of June 2019 when I was under complete remission, I was advised BMT. I stayed in the hospital for 15 days in complete isolation and because of the high dose of Melphanal that was administered, the first 5-6 days where extremely difficult. For around 8 days I was on a liquid diet as I could not eat any solid food. Along with that I had high fever and dysentery and at one point of time, I had this feeling that I may not survive. But my doctors were very positive. I started gradually improving from the 9th day and by the 16th day, the doctors had discharged me from the hospital. I came back home and for the next one and half months I was living in complete isolation in an aseptic environment without any outside contact, which was tough.
Now when I look back on the BMT surgery, it does not seem so bad except for the first few days, as I have mentioned earlier in this paragraph. The later recovery was definitely smoother. This I would like to tell people who might think of going for a BMT.
What medications are you on?
Currently, I take 2mg Bortezomib injections monthly. Since I have mild hypertension and borderline diabetes, I daily take medicines like Concor AM 5mg, alongwith 50mg of Januvia, 10mg Atorvastatin and 200mg of Aciclovir as a protection against viral infections since patient with myeloma are quite susceptible to the same.
Were there any side-effects of the medicines?
As of date, I do not have any major side effect except for temporary peripheral neuropathy.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
The challenges I faced were mostly psychological. I first started wondering as to how could I develop such a disease. I was in denial mode as if nothing had happened to me. In the second phase, when it started sinking in my mind that indeed I had this problem, then I started blaming God for my fate. I had become emotionally unstable and my behaviour became quite erratic. In the third phase when I decided to fight I thought of going about it all alone. I was going to the hospital alone early morning, paying for my bed and the related doctor fees and then finally, receiving the medicines and the injections and coming back home after taking the discharge certificate. By doing this, I gradually became confident and I decided to fight it the same way throughout the next 6 months. My advice to fellow patients would be that they should not feel helpless, they should strictly follow the advice of the doctors and always have a positive feeling about the final outcome.
Have you learnt anything in managing your condition that you wish you knew before?
I wish I had started my treatment much earlier. In the initial period when I was in the denial mode, I was actually doing doctor-shopping. I was running from one specialist to another with my reports. I went to 6 different hospitals in Chennai, Delhi and Kolkata. In the process, I had wasted valuable months during which my condition further deteriorated. Then finally one day I was bluntly told by one doctor that I should spend no further time consulting doctors and instead I should immediately start my treatment. It was only after this that I immediately started the aggressive chemotherapy for myeloma.
What kind of specialists do you consult and how often?
I consult my onco-hematologist once every 3 months and a nephrologist once every 6 months, who monitor my parameters.
What resources are available to you in your city to help you manage the condition?
The treatment for multiple myeloma has become standardized all over the world and it would be same for the patient everywhere. Currently there are enough resources in Kolkata which help a myeloma patient to manage the conditions. The medicines are easily available and so is the availability of excellent specialists in the city.
Have you had to make some changes to your lifestyle because of your condition?
Because of my impaired kidney functions, I strictly avoid red-meat and other high protein diets. The doctors had further advised me to quit smoking and drinking which though I have not been able to completely quit, I consume in moderation and also very seldom.
My only form of exercise is plain walking.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
No, I have never tried any complimentary medicine or therapy and have strictly followed the advice of my allopathic doctors.
Has it been difficult emotionally to cope with your condition?
Initially it had been quite difficult emotionally as I was constantly cursing my fate for my conditions. I was constantly asking God why he had subjected me to such a situation. I was jealous of everyone around me. Then came a phase in my life when I started to coach myself psychologically. To remain constantly positive, I started reading extensively and I even started to cook and experiment with food. I gradually coached myself to fight it back alone and I am happy today that I have been successful in completely reorienting myself.
How has your family supported you?
My family has always supported me very strongly. I had also the support of my very close friends and last but not the least, I received very robust support from my office and my immediate colleagues who always stood beside me and constantly encouraged me.
Did you see a counselor for support? Were you offered counselling by doctor?
No I did not see a counselor for support. As I have already mentioned earlier that I coached myself extensively when I decided to do it all alone and sometimes even going to the extent of denying help from my friends and relatives. I wanted that nobody should accompany me to the hospital when I was undergoing treatment. This forced lonely journey gave me a tremendous sense of confidence and positiveness in me. My philosophy towards life completely changed in this process.
How did your friends treat you ? Were you isolated?
My very close friends had always lent their support to me but curiously, some of my not so close friends started avoiding me for reasons best known to them. May be they were very uncomfortable to meet me or maybe they had other concerns like, I might seek some monetary help or otherwise from them. I really do not know why they behaved in this manner at that point of time. But as I have already mentioned that I decided to fight it all alone, I never felt any sense of isolation.
What was the hardest part of the treatment? What kept you going? How has this changed your life perspectives and ambitions?
The hardest part of my treatment was the phase where I had to come out of the initial denial mode to the final acceptance mode. It is basically a tremendous psychological transformation that one has to go through during this phase. It is during this phase that my perspective towards life and all the worldly matters started changing. My craving for all things good gradually diminished and I realized that most of the things around us are especially, the things we usually crave for, are quite superficial and meaningless. Once I realized this, I became much more happy and at peace with all the things I already possessed. I also became much less ambitious and I started looking inwards for inner peace and tranquility.
Any anecdote that you would like to share?
My only piece of advice to my fellow patient would be they should remain always positive because we do not know what really lies in store for us in life. In the initial days when I was diagnosed with myeloma many friends, colleagues, relatives and acquaintances had met me to express their support and console me. All of them were perfectly normal people with a healthy life while I was fighting this apparently unequal battle with my disease and was counting my days. Now, when I stand in March 2023 and I look back these 5 long years at least 4 to 5 of those perfectly healthy friends/ colleagues of September, 2018 are no more today for various reasons. Life is, therefore, very uncertain and fragile. One cannot really predict what lies in store. One has to cherish every moment and be positive which I always try to do.
Interviewed by Moyna Sen
