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Submitted by PatientsEngage on 17 October 2019
Neema in a pink shirt, white pants and a scarf in an open area walking with support of a cane

A diagnosis of Osteosarcoma (Bone Cancer) when she was 26 years old changed Neema's life forever. She talks of her challenging journey including multiple surgeries, amputation and more and the person who motivated her to fight the cancer.

Please tell us a bit about your condition

It was November of 1998 when I was just 26 years old. I was diagnosed with Osteosarcoma (bone cancer) of my knee.

What were the early symptoms? What made you go see a doctor?

I used to work at a Research lab where I had to stand for about 8 hours daily. I started noticing some pain on my knee joint on my right leg. I ignored the pain initially because I thought it was from standing for long periods. My 1 year old son had a cold one day, so I took him to the Polyclinic. I took the opportunity to see a doctor for my knee pain in the same polyclinic. Right away, an X-ray was done while blood and urine were sent for testing. The X-ray came within a few minutes and the doctor informed me that there was a growth on my knee which should be excised. The very next day, he made an incision to open me up and sent the sample for biopsy because he realized it was not a benign growth. The biopsy result came after 4 days and they informed us that the tumor has probably been growing for 5-6 months and that I would need chemotherapy. This had come out of nowhere, we were shocked. We tried to stay calm and do as directed.

हिंदी में पढ़ें:  मुझे अपने बेटे के लिए अपनी हड्डियों के कैंसर से लड़ना था 

What was the treatment prescribed?

We went for an MRI and were referred to an Osteo-oncologist Dr Pankaj. He ordered 7 cycles of Cisplatin + Adriamycin and said I would need an implant to make sure my leg stays straight. The Stanmore implant from abroad after a concession at the Cancer Research unit cost us 1.5 lakh rupees. Once chemotherapy ended, my implant had arrived and was inserted after removing the affected knee. For a whole month and a half, I had to keep my leg straight and undergo physiotherapy regularly.

Then I had to start 4 cycles of Methotrexate. By the time, it all finished it had been a year. Follow-up required X-ray of leg and chest every 3 months for 2 years and then every 6 months after that. I had gotten used to the implant and had gone back to work, thinking the worse was behind us.

Tell us about the decision to amputate your leg and the complications

During one such follow-up, the X-ray showed some suspicious growth on the implant. Biopsy was done immediately and it was clear. Again in 2003, a biopsy was required and samples were sent to Tata Memorial hospital as well for a 2nd opinion. It showed that minute tumor cells were present. My oncologist called me right away and explained to me that an amputation would be necessary now because it was non-resectable. I was not ready to hear this! My husband and I got multiple opinions even from renowned Dr Suresh Advani, who convinced me to get the amputation sooner than later to prevent the cancer from spreading.

The next day, I decided to go meet my Gynecologist because of incessant vaginal itching that had started occurring. When she did an ultrasound, she discovered chocolate cysts in my ovary. Since the itching was unbearable, my Gynae decided to do a surgery right away to remove the cysts. When she opened me up, she found multiple adhesions around the ovary, uterus and intestines and sent for instant biopsy due to my cancer history. Biopsy was clear, so she closed me up after removing one ovary.  I had to recover fast from this surgery because my amputation was coming up in Ahmedabad. I left my 7 year old son with my mother in Mumbai till they could join us after a few days.

In July of 2003, my right leg was amputated. My mother or sister would stay with me in the hospital to look after me because I could not even go the bathroom or get out of bed.  We were cautioned that a daily dressing was essential so that the stump would not bulge but instead maintain a cone-shape ideal for fixing a prosthesis later on. With all the accumulated medical bills, we could only afford the local Jaipur foot. Rehabilitation was extremely tough after I was discharged. I had to learn to walk all over again. I would fall a million times initially because of lack of sensation and imbalance. But I was told to not use crutches for long and instead get accustomed to my Jaipur foot.

Then in 2008, I started seeing heavy uterine bleeding and was found to have multiple uterine fibroids. Medications helped for a short period but the bleeding resumed so heavily that my BP would drop and my Hemoglobin would fall to 7. Six months down the line, fibroids had increased in size and a complete Hysterectomy had to be done. Counting my C-section, this was the 8th surgical procedure I had undergone.

What is your present condition?

I continue to use my Jaipur foot and am very mobile. If there is a lot of walking involved such as at airports, then I opt for a wheel chair. My husband did purchase an imported prosthesis for me but due to the Indian weather it does not suit me; I break out in rash and feel very hot.

I did a flower arrangement course a few years back, so I now get orders to do bouquets and floral decorations for festivities etc. That keeps me busy.

Were there any side-effects of the medicines? If yes, how do you manage them?

During Chemo, I used to get a lot of vomiting, constipation, loss of hair and eyebrows, mouth sores and loss of taste. I remember vomiting and then forcing myself to eat without any taste in my mouth.
Methotrexate also caused severe constipation. I would frequently be admitted for enemas and strong medications.

Hair loss was another traumatizing side-effect because it would fall in clumps. Finally I called my beautician aunt home and got it shaved off and even tried a wig for a few days. However, my son at the time didn’t care for it so threw it away one day. I think he didn’t want to see his mother in fake hair. My son is all grown up but continues to be very protective of me.

Did you have to travel outside your city for your medical treatment or consult?

Due to cheaper treatment options and better family support, we got all my treatment done in Ahmedabad.

Have you tried complementary medicine or therapies, like homeopathy or yoga? 

After my hysterectomy, my weight was on the rise, so I started doing functional exercises while sitting or lying down. Yoga and pranayama was also started around 7 years ago.

How has your family supported you? Who has been your biggest support/companion through it all?

My husband motivated me a lot and encouraged me to be independent and walk again. My doctor was very blunt and told me that I had to be strong. My parents and sisters were my backbone; they would take turns tending to me and my son.

Some people have been God sent such as my son’s 2nd grade teacher, who went out of her way to cover his missed work, send his assignments home and even visit me a few times. Over the years, we have continued to keep in touch and have become friends.

What were some of the challenges you faced?

I knew at the time of my diagnosis, I had to live and fight for my son who was only a year old. But, when I was told I needed an amputation, I was devastated. I realized that I would not be able to work in my current job anymore and would have to start back from zero. I was very worried as to how I would manage physically and financially. Those were real tough times!

 

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