The coincidental diagnosis:
My husband was serving in the Army and was posted in a place called Binnaguri, which is towards the northeast.
We were in an Army cantonment, and I was putting moisturizer on my neck when I felt a huge lump there. We were in a very remote area, and there were no big hospitals, so we went to Army hospital there, and doctors said it’s nothing. We consulted many other doctors, and all told, don’t worry, it’s nothing and don’t pay too much heed on it.
At this point, my daughter and I traveled to Delhi, and my friend, who is an anesthesiologist, said, do not take this lightly.
We continued consulting many doctors, and when one of the doctors asked for an FNAC to be done. The FNAC report asked for an excision biopsy! The mere mention of a biopsy id very scary, and it gave me goosebumps.
On hearing this we went to the R&R hospital in Delhi, a hospital for defence personnel.. The moment we went in, the onco surgeon said that the lump had to be removed immediately. I wasn’t even prepared for this. The surgery was scheduled for 2 days later. I was given the assurance that it will be a benign lump because this lump was in my thyroid gland, and most of the thyroid lumps are benign.
I was told that not to worry, after the surgery, I will be just fine. The surgery was planned to remove my left thyroid gland.
When my surgery was done, it was found that the size of the lump was 3.2cm; it had actually sat like a tiny little ball on my neck.
During my first surgery, the vocal cords were accidentally touched. Post the surgery when I regain consciousness, I couldn’t speak, instead I croaked. The onco surgeon told my husband that I don’t think your wife is may never talk again. Before the thyroid surgery, a patient is generally prepared that there may be a risk of damage to whole vocal cords, but it’s very rare, and this time I was that rare one. So when I regained consciousness, I got to know that I have suffered damage to my vocal cords. I croaked for over a year. A year later I could speak well but with damaged vocal cords. So today though I talk but after some time of talking my voice gets tired. Just like excess exercise tires a human body, talking for long tires my voice. But I have adapted now.
After the surgery, the thyroid nodule was sent for a biopsy, and it was found to be malignant. I was diagnosed with follicular carcinoma with Hurthle cell changes, and hurthle cell is a very rare kind of malignancy.
Within five days of my first surgery, I was scheduled for my 2nd surgery because the tumor in my thyroid gland had broken the wall of the thyroid gland, so the doctors were fearing that cancer may have spread to other parts of the body.
I was taken for the surgery to remove the remaining left thyroid gland. I underwent a complete Thyroidectomy. And while my thyroid glands were removed, accidentally, my parathyroid was also taken out, and again I came into the list of those rare 1% known cases in the world who live without parathyroid, which means that my body doesn’t produce any calcium. Post-surgery I had no thyroids and no parathyroids.
God wanted me to live:
Four days into my 2nd surgery, I again developed something very rare. I was in the washroom, and my body started stiffening the just like a dead log. I got up, and I told my husband that there is something wrong, and he called up the onco surgeon. The onco surgeon was terribly scared; he told my husband to get me immediately back to the hospital.
We got into in the car, I remember so vividly that my mom handed me a carton of juice, and I couldn’t close my fingers over it. My body gradually started slipping into rigor mortis while my senses were alive. I was gawking, I couldn’t shut my mouth, my tongue stiffened, my eyes wide open, but I think God wanted me to live. Basically, my body was slipping into rigor mortis (what happens to a human body after death). We reached to a traffic signal, and my husband said he didn’t know what to do, though being physically compromised my senses were alert. I indicated that on to the left of the traffic signal, there is a hospital. We went to the hospital, and I was immediately put on IVs, my heart has just stopped, but I was brought back. I was told that a fraction of a second later I could have died. I suffered from calcium shock/ tetany. I was back into the hospital where I was Operated. That’s when we got to know that my body no longer produces calcium and the heart being is a muscle had stopped. All muscles need calcium to function.
Torture to the body:
After the surgery, my doctor started my cancer treatment. Thyroid cancer is treated in a very different way.
For thyroid cancer treatment the preparation involves actually torturing your body. Starving the body of salt and no thyroid supplements for a month is a pre-requisite for the same.
Thyroid cancer scan is known as an I-131 scan, and for that, I had to be prepared up. The first step was that I need to be totally off thyroid supplements, so post my surgery, no thyroid supplements were given to me, so my TSH gradually shot up. I was told to be totally off the salt, I couldn’t eat white salt at all for a month, I couldn’t eat any outside food, I couldn’t eat biscuits, bread, and everything had to be homemade and without salt. With TSH so high, my body would become very sluggish. I couldn’t even eat half a chapati. This is how preparation for the I-131 scan was done, and now it was the time for my scan.
I was taken into a room, a stone container was there which was open, and from that, a tiny little bottle was taken out, inside was a capsule that was picked up with a forceps, and it was dropped into my mouth and the person who gave me the bottle ran away from the room and said to wash it down with a glass of water. He ran away because the capsule was a radioactive marker capsule. It is a marker dose to mark any remaining or growing thyroid cancer cells in my body. I was radioactive, so that meant I was hazardous to everyone, and I was told to stay away from anything that moves.
After two days, the I-131 scan was done, and it was found that some thyroid cancer cells were remaining in my body, and I had to undergo Radio ablation.
In radio ablation, I was asked to drink a huge dose of radioactive iodine. So I went into a room and there was a liquid-filled bottle, the doctor was sitting there, and a pipe was attached to the bottle. The doctor gave me instructions to drink every drop of that liquid, ensuring not a single drop should spilt out.bI was told to not let the tube touch anything, not even the slab where the bottle was kept. The liquid was highly radioactive, but that’s the only way to kill thyroid cancer cells. I drank that liquid, and I was so unsettled that by mistake, I put the tube on the slab there. The doctor got so angry at me and scolded me saying I had contaminated the entire area. That was the only time when I cried because I never expected that the treatment would be like this.
Post this I was taken to a room because patients like me have to be isolated from anything that is alive. My body was highly radioactive and I was like the leak at the Chernobyl radioactive plant. I was put in isolation. I was shut in a room; the door was locked from outside. I could not meet anyone; I had to use the separate loo; my clothes had to be washed separately. I was admitted in a hospital, and I did not have any caregiver around me, and my food would be brought through the door, there would be a knock on the door, and the food would be kept outside, and people would leave. The only contact to the outside world was via phone.
I was admitted to the hospital for three days, and on the 4th, they sent me back home, and I never knew what radioactivity would feel like till I experienced it. The radioactive emission in my body was measured with a meter like it is done in nuclear plants. I was sent back with instructions that for the next three days, I have to stay away from everyone, and that’s how I was radio ablated.
And post that for the next six years, the scans continued. The cycle was each time repeated, first for two years it was six-monthly check-ups then it became yearly as thyroid cancer patients have to compulsory go for the I-131 scan. So every time a month before the scan I had to stop thyroid supplements, stop eating salt, so my TSH should each time shoot up to 150 and each time I would go in the hospital the radioactive capsule was put in my mouth, I would be isolated, and two days later the scan would be done. So before my body could recover, I was ready for the next scan.
I remember when I went to my endocrinologist, he saw my reports, he started rubbing his hands with glee and said TSH of 150 is so toxic for your body that you can go into a shock, but it’s so good for your scan.
Finally in Remission:
This continued for six years, and in between the six years, it was twice suspected that the cancer has metastasised and has gone into the bone, so I underwent a bone scan, but fortunately, it was negative. Five years later, I was declared in remission, and today I’m a lower risk cancer patient.
But I don’t complain:
The package deal that came with cancer is that my bone condition is very poor, so I have suffered two fractures. My doctor says that I can’t afford to take a fall. I developed arrhythmia, I’m not overweight, but still, I am being diagnosed with varicose, I suffer from uncontrolled asthma. It took me one year to find my voice back, and now I have permanent residual voice damage; I can’t raise the pitch of my voice, and if I talk for too long, my voice gets tired just like your body gets tired.
As my body doesn’t produce calcium, I’m on a heavy dose of calcium tablets, and If I don’t eat my calcium tablets today, I’ll die tomorrow. I take about 15 pills in a day, and it’s been there for the last 11 years now, and as luck would have it, for me, the most important thing in my life is those pills. People are actually surprised when I say if I don’t take my pills today, I’ll die tomorrow, but that’s my reality.
But I don’t complain too much about it; I say God has given me the power to control my life, and very few people have this power.
I have to undergo blood tests every 2-3 months, so there are so many pricks that are happening that I have forgotten the count of it. Last year I was suspected of having blood cancer because once you been through cancer, it can recur in any form any time. I underwent a lot of tests, but they were negative. This January, again, I developed some complications, and the doctor suspected that cancer is back, so I went another PET scan. And when I had to go for my PET scan, that morning, I went out with my Pinkathon buddies, and though my leg was in a brace because I twisted my ankle, I still danced, and I had a lot of fun. I came back home and went for a scan. I have undergone nearly about 8-10 scans, and each time, my attitude is the same. My approach is very simple; I take as it comes, and since I know that cancer has a nature of coming back, it may or may not come back, but the probability that it may come back is always there. So I have always gone with a mindset that if it comes back, I will fight with it again.
I have never questioned why me. And it’s not just cancer but many other issues, but I never said why me because I feel it’s a waste of time because as am not going to get any answers, there are no answers for it and that is why I never dwell in past that why it happened, why did God choose me. I honestly believe it happened to me because it was destined to happen. There are things that you can’t change but when you encounter them how you manage with those issues is what matters, and that is what my attitude towards life has been, and that’s how I move forward.
My inner calling:
I feel my cancer has put me on my path to my inner calling. I’m working with cancer patients at Tata Memorial Cancer Hospital. I’m associated with an NGO called Cope with Cancer. I am working as a palliative care counselor. All this is volunteer work on pro bono basis. I also do an interactive session with breast cancer patients; I talk to them about cancer and their upkeep post-surgery.
At TMH I bust the myths associated with cancer and handhold the patients giving them hope because I believe until it’s not your time to go, nobody can take you away.
I provide emotional support to the patients because the treatment is very painful, and at that moment, the patient needs the assurance that things will be fine.
I have been counseling a 22-year-old girl for the last one year. She came to me very reluctantly because, generally, what happens when at the age of 22, you are diagnosed with such advanced lung cancer, at first you are in denial, you don’t want to believe it. So at Tata Memorial Hospital, when the doctor told her to meet me, she refused. But finally, she came to me, and we started talking, and today after a year, she says I’m just like her mother. She is now declared cancer-free, and I’m very happy for her.
Source of motivation:
My daughter was 12 years old at that time, and she has always been a great motivation for me to carry on in life. I firmly believe that family is a huge support and you can’t do without them, but I also believe that until and unless you choose to help yourself, the family also can’t do much.
There is a saying in English that “Only the wearer knows where the shoe pinches.” So what my body goes through only I can feel not my husband, not my daughter, not my well-wishers, so I have to make the choice that I won’t give up. Every time a complication comes up, I take it in my stride, but I’m very aware of my body because I never want to reach a stage when I become dependent on others!
You have you love yourself first; when you love yourself, the love of people around you automatically happens. My husband, daughter, mom, brother, sister, dad, and even my dog were a huge support for me, but I would say it was 50% their support and 50% my own will. Doctors also believe that if you are positive, your body has positive vibes, it helps in controlling the disease, and that’s how I have dealt with it.
I have always been physically active. I believe, irrespective of any disease you get, we should take care of our bodies. I have always been very particular about the food I eat. It has helped me a lot in dealing with the complications that have come my way. Even now, I’m very careful about my diet; I eat everything but everything in moderation. I exercise, walk every day and practice Yoga too. I try to remain mentally happy because I feel if you are happy, then you can control so many things.
Acceptance is the key:
After going through this rigrous treatment, there are permanent side effects hence I know what I was before treatment, I’ll never be that again. And as the body ages, the ageing process is going to cause the normal wear and tear. The damages that have already happened are irreversible, so I have learnt to deal with them. And it’s okay if you can’t do what others can do, but there is a lot that you can do, and others can’t. Our body talks to us, so listen to the body and adapt what it says.
Caregivers need counseling:
I feel when cancer is diagnosed; it’s not the diagnosis for just patients; it is a diagnosis for the entire family. Patients suffer physically and mentally, whereas a caregiver suffers mentally immensely, in addition to the fear that what’s going to happen to their loved ones, there are issues with finances to be dealt with because the treatment is so costly. So caregivers must be given a lot of counseling. I do that in my sessions in Tata Memorial Hospital; I spend a lot of time with the caregiver because they silently face the mental trauma and they can’t express it because they are supposed to stay strong in front of their patients, and it takes a big toll on their mental health.
I feel that by supporting the caregivers, I’m indirectly supporting the patients because a positive caregiver will give a positive vibe to a patient.
My 3 Life lessons:
I have picked up three lessons in my life.
- 1- First is my motto, which is “Impossible is for those who don’t believe in themselves.” I have been told not to do anything strenuous, but in December, I ran 5km with Pinkathon, and I feel it’s a lot to do with your mental state.
- 2- Don’t let your thoughts control you, you control your thoughts because that plays a huge role in your life journey.
- 3- In a book The last lecture, the author writes, “You can’t change the cards you are dealt with, only the hand that you play.” And this resonates with me a lot. There are just like a deck of cards, and when somebody is distributing the cards, you don’t know what cards are going to come your way, the only thing that’s in your control is how well you play those cards. This is what I have learned in my struggles with my disease and the complications that came in.
For newly diagnosed patients, I want to say that please remember cancer is curable even in advanced stages, so please don’t give up hope. There are so many kinds of treatments that are available, so do not be scared of cancer.
Do not associate with the stigma of cancer in your life. Cancer is not the stigma; it is a disease that can happen to anyone. Most of us refuse to believe that it can happen to us, and that is why the detection is so late. So it’s important to believe that it can happen to me too and I will be aware of it.
Never give up; there is always hope. Till your time is up no one can take you away. So cancer doesn’t mean it’s a death sentence.
And for the ones who are in the final stages of their life I want to say that our life journey is all fixed, some have longer life journeys while some have a smaller life journey and we can’t control it. Each one of us has to die someday, some die early while some die late, but the moments that are still with you do not let them go by indulging in self-pity or feeling sorry for yourself, you only get one chance to live, make the most of it.