I am Rashi Kapoor, 38 years old , a synovial sarcoma survivor.Sarcoma is a very rare type of cancer.As per. Survey , it happens to one in a million.Life has not been perfect for me as cancer has jolted me physically, emotionally, mentally twice.It has hit me 5 years back with molar pregnancy which is a type of cancer.I underwent chemotherapy in AIIMS and my case was handled well by the doctors in AIIMS. But last year in June 2016, I was diagnosed with another cancer called as synovial sarcoma.I had pain in my knee from last 6 years but I kept ignoring as I was working as a mathematics teacher and my priority was my family.A stage came when I was unable to bend my knee .I consulted various orthopaedic doctors who advised me to go for x-ray and MRI of right knee.All the doctors gave their own diagnosis.I kept eating all the pain killers, did hot water fermentation, went for physiotherapy for almost 6 months.When I did not get any relief in terms of pain, swelling and bending of knee was becoming difficult day by day, my gait pattern that is way of walking also got affected.i started limping.i kept visiting orthopaedic doctors in NCR .They suggested me to go for arthroscopy which is a surgery and performed biopsy on me .My blocks were collected and sent to pathology lab for testing.They diagnosed that it is spindle cell proliferation. My blocks were also submitted in AIIMS. The histopathology report declared that I had synovial sarcoma.i had never heard of sarcoma earlier.i happened to meet sarcoma specialist , Dr Sameer Rastogi, associate professor in AIIMS , IRCH
He explained to me that I was suffering from cancer. I was shattered completely as all negative thoughts were coming to my mind.Lot of questions were coming to my mind like what will happen to my family especially my two lovely kids Aarit and Rhea who were just 9 years and 1 year at that time .I was advised by Dr Sameer Rastogi to go for X-ray, MRI, 2 d echocardiography and X-18 test .X-18 test is a test which confirms that a person has sarcoma.In my case, that test was positive .Since sarcoma is a very rare type of cancer, there are few doctors all over India who treat it.i was advised to go for surgery, chemotherapy and radiation.Facing this treatment was the toughest part of my life.My case was extremely complicated and various doctors suggested me amputation.I was completely shattered with a thought of amputation at that age of 38.i did not want to be dependent on anyone.I went to Mumbai to meet Dr Ashish Gulia in TATA memorial hospital.Looking at all my reports and scans he performed a surgery on me .He did arthrodesis…it is a surgery done in a way where a complete rod from hip to ankle has been inserted.The result is that I am unable to bend my knee .It is completely straight now.It was very difficult for me to imagine a life where one leg is completely straight.So many questions came to my mind like how will I walk? How will I lead my rest of the life? Will I have to depend on someone to go to bathroom? But it is rightly said that when going get tough, the tough get going.i started valuing my life more.i have emerged out as a stronger person now.Earlier I used to crib over small things in life but now I am grateful about the fact that I am alive.
My mindset has changed completely .i count my blessings and have developed an attitude of gratitude.The toxic treatment of cancer not only jolts the patient but it it also jolts the family members who are care givers to a patient.So the role of care givers is equally important.During my illness , my family that is my husband, Mr adhir Kapoor, my father in law, Mr Azad Kapoor and my two lovely kids Aarit and Rhea were my pillar of strength.I am greatful to God for blessing me with a family who did all possible efforts to make me survive.It was very difficult for us to get the surgery done from Mumbai as we had no support system, kids were very young and had no idea about where to stay as we did not have any relatives in Mumbai .So my husband and father in law , aunt took me to Mumbai and kids were managed by my mother and other family members.i will remain greatful to all of them for supporting me at that time. People get scared when they are diagnosed with cancer but I want to tell everyone that cancer is not the end of life.If you keep your will power strong , train your mind to see the good in every situation and have an optimistic approach in life, you can live your life to the fullest.When my treatment was going on , I used to do yoga as yoga gave me lot of mental strength to remain calm and cultivated the habit of gardening and reading positive thinking books.Taking care of plants, watering them, nurturing them helped me to control negative thoughts coming to my mind.After my surgery was done, I started walking with the help of Walker.Slowly and slowly I started walking with the help of stick.After some more practice I started to walk without any stick or Walker.I have become independent now.I do cooking in the kitchen, prepare meals for my family, go and attend my son’s PTM in school , take my daughter to park.
After my surgery , I was advised to go for chemotherapy and radiation.My radiation was done from Fortis hospital Noida.i had to go and take radiation sittings for 30 working days.After radiation, I was advised to go for chemotherapy.Chemotherapy is the toughest part of a cancer Treatment as it is only the patient who has to go through the toxic treatment of chemotherapy.It is very difficult as lot of side effects happen during chemotherapy sessions.Although it depends from person to person about side effects faced by a patient.The worst part of chemotherapy treatment is having a hair fall.I had long, beautiful and silky hair but I turned bald due to toxic nature of chemotherapy drugs.i was given ifosomide drug and had to go through five cycles of chemotherapy. During my chemotherapy cycles I faced many side effects like constipation, mouth ulcer, fever because of low immunity and vomiting . I also purchased a wig of artificial hair from sheen wigs, Karol Bagh and wear it whenever I used to go out.
The drugs given during chemotherapy makes you mentally , emotionally and physically weak. It affected my taste buds too.I used to have sweet tooth as only sweet things like halwa, porridge were eaten by me.But now after facing the entire toxic treatment I have emerged out as a stronger person. My hair have also come after the treatment got over. i have started believing the fact that nothing is permanent in this world not even our troubles.I have started celebrating each day.i am happy and thankful about that fact that I am alive.During my treatment was going on , I promised myself and my God that if I survive ,I will help other people, other cancer patients specially those affected by sarcoma as it is a very rare type of cancer.I promised myself that since I am alive and able to walk as Dr Ashish Gulia has saved my limb, I will walk for the welfare of others. I will make difference to someone’s life.I met several other like minded people in a seminar on sarcoma organised by Dr Sameer Rastogi on 5 March 2017. The chief guest of that seminar was Dr Rath. It was a very interactive meeting where all doctors, sarcoma specialists, medical oncologists , dieticians , radiation oncologist and surgeons were there along with patients undergoing treatment, survivors and caregivers.We formed a group of 8 enthusiastic people who wanted to make difference in sarcoma care in India.We mutually decided to name our society as Sachin sarcoma society. It is a registered society whose mission is to spread awareness of sarcoma , build companionship with sarcoma affected families. All the members of this society are affected by sarcoma in some or the other way. Our vision is to remove the fear of sarcoma .The aim is to instil hope , faith in every sarcoma patients life to survive by love , care and empathy and our good deeds. I would like to express my sincere gratitude to Dr Ashish Gulia for performing limb salvage surgery on me.i am able to walk because of him.i am grateful to Dr Sameer Rastogi for being our mentor, guide and helping us in every possible way to form this society.i am grateful to my husband Adhir for always being there with me, helping me to come out of it, supporting me in every possible way. Lastly , I would like to say that very little is needed to make a happy life, it is all within each one of us , in the way we think.
God bless!
