Gautami Tadimalla

The primary reason that I'm here today and I'm talking about this is that I went looking for my cancer myself. So I was about 32. My daughter was about three years old. And that's when I started checking myself, doing a self-breast exam and doing the annual bloodwork and the check-up and everything. My carefulness came from being a single parent. The awareness suddenly kicked in that I had to take care of myself to be there for her. So it started with that. And then when I was about 34, 35, that's when I found a lump, went to the doctor, did all the tests. Each one came out positive for malignancy. And then I went through the treatment. It was a journey that was all-consuming. It eats you up from the inside out, mentally, emotionally, physically. And it's a journey that perhaps can never really be adequately described in words by anyone who's gone through it, because there's always going to be some part of it that's felt so deep that it's very hard to put words to it. But yes, I would definitely say it is unfortunately the most profound experience that one can have in life. My approach to parenting is that I never babied my daughter. Neither did I ever look for her to grow up faster than her age. But I always wanted her to know, to be aware, because I saw through her eyes the intelligence with which children view the world around them, the awareness with which they engage in the world around them. And I think it's a huge pity that we dismiss that. We don't even recognise that and say "Oh, they're just kids." So I spoke to my daughter. I told her, you know, mama has a has a lump over here in the breast and then I'm going to have some tests. I'm probably going to cut my hair off. And then after that, I'm going to have a surgery and this is what's going to happen. And then I'm going to have these injections and then I'm going to be very tired for a while and then I'm going to be okay. So I just explained that each step of the way. And she was just there with me, I made it as matter of fact as possible. 

I did have an excellent team of doctors. I should also say here that I went looking for answers and I kept asking them questions. I did not Google. I did not look for other people's experiences and opinions, but I went to the doctors that I had chosen to trust with my treatment, and I asked them all the questions that I had. Now, I must say that I know I'm aware that I do have another advantage is that I come from a family of doctors. My father was one of the earliest radiation oncologists in India. So he set up probably one of the earliest cobalt treatment systems in India in the early sixties, if I'm not mistaken. And my mother was a pathologist, and we always had a very practical, common sense approach to health and illness and disease. So when I went looking for my cancer myself, I believe that that's where half of my battle was already won. 

I still remember the first time I was at home and someone came to the house for some work and I went out to meet them. I am a person who has been in the public eye for most of my life, so I've grown up in front of probably three generations of Indians, especially South Indians. And I have been blessed to receive a lot of love from people. But when I went out and I saw these people, they came forward with a smile and their face changed. They went blank. They were looking very disturbed. And then they actually looked angry. So it troubled me for a while and I said "why that anger?" And then I realised seeing me the way that they saw me with no eyebrows and no hair and all of that, I think somebody that they had seen on screen - vivacious and full of life, glamorous and doing all of that, creating so much energy on screen - suddenly they see me as the epitome of cancer, which equals death. I think that shook their sense of their own confidence in life. And then I realised that this is probably at the root of a lot of the stigma that people affected with cancer face. It makes people very uncomfortable because it makes them question their own mortality. 

I do think that was a factor. But for the anger to come in, that is something that would come in only when they were intensely unhappy about something that they were seeing. They could have felt sympathy, they could have felt pity, they could have felt discomfort. But the anger comes when something within you has been jolted. Once my treatment was over, I started talking to journalists and taking opportunities for interviews. And then they would come in and they would ask a very famous question: "you had a problem, so are you out of the problem?" And it took me a while in the beginning to figure out what this "problem" was and you could see the air quotes when they said it. And I said, "no, it's not a problem. It's cancer. Say the word." And I would force them to say the word and they would almost strangle themselves in the early days to try and get the word out because I was forcing them. So starting with that sort of thing, when I started speaking about my experiences and how I found my cancer and everything, I went through it step by step, the emotional impact of it, the treatment, everything. People were primarily flabbergasted. They couldn't understand that I was actually speaking about it. And then I realised there's so much fear, there's so much shame, there's so much confusion, distrust. There's a whole lot of things bundled into this world called cancer. 

It is hugely difficult. I mean, it's almost impossible to put into words the feelings that rushes through you and pervades every cell in your brain. But you have to deal with it a step at a time because life continues and that life is worth fighting for. 

First of all, to understand their cancer. First of all, to know what is happening within their body. Try first. Understand that. Open your mind. And nine times out of ten understand that you probably did nothing to deserve this. There should not be a sense of being a victim. I've encouraged them to go to doctors that they feel comfortable with, people that they can ask questions. I say, "are your doctors telling you all of these things? Are they ready to take a minute extra? Because I know everyone's pressed for time, but are they okay with taking a minute extra to answer a question or to see that you're in pain or you're confused or something and then take that second to ask, Are you okay?" And I know we're probably going to come to this, but I want to jump the gun a little bit. One of the biggest crises that's happening here is lack of support for most women. For a huge number, I won't even say most, but a huge number of women lack support, as in the ability and the freedom to make their own choices, their own decisions about their diagnosis and their care, about interacting with their doctors, their medical caregivers. So that is something that I have been seeing and hearing off that is far more widespread. And, you know, they would go in for, say, a consultation with their doctor, their family hospital or, you know, somebody else is there and the doctor gives them the diagnosis and they just told, "yeah, it's okay, she'll have the surgery. And then after that you can do that and you can do this. And yeah, she's okay with that." And they just make the decisions at walk out. So there are things like this that are very troubling still that need to be spoken about a lot. 

Life Again Foundation was formed because you realise that you get past cancer. To be honest, it took me a very long time before I could trust in tomorrow, where I could make plans for next week where I could anticipate next week and next month. And again, to be honest, it took me at least a few years before I could make plans for the next year. So you tend to very much live in the moment because your sense of that tomorrow and the certainty with which you would look at your future is shaken. But once I did figure that out, then you realise that life goes on. But then the way it goes on has to be reinvented because you cannot be the same person. You must not be the same person. And so that's how Life Again Foundation began. And it started with going around and talking to as many people and as many groups of people that I could find with all kinds of socioeconomic backgrounds, all levels of literacy, all levels of urbanised and rural backgrounds everywhere. I just lived in my car. I've been living in my car for the last five years and just driving through all the states. And it's been really amazing. 

Surprisingly, in terms of awareness and in terms of being open minded enough to accept the reality of cancer and its implications, there's really not that much of a difference between the rural-urban divide. The divide that I have seen and understood comes in terms of facilities available for treatment. So somebody in a village gets diagnosed, they go to a hospital in a town or a city nearby or come all the way to Chennai. And then they have the initial consultation. They have the initial treatment that could probably be first level of intervention is most of the time surgery. And they have that. They go back and they have to come back for consecutive chemotherapy or radiation or whatever the next treatment is, and that's where it starts falling through the gaps. The practical aspects of them being able to travel regularly at that distance because it completely upends their life, their home, their work, a lot of them work on a day to day basis. So if they're away from work or the breadwinner in their family takes off work to bring them to this treatment, then they lose that money and they have other mouths to feed. So that is probably the biggest crisis we have right now in reaching equitable care to every section of society. And that is one of the things that is probably my primary focus now with Life Again going forward. So it's these continuing treatments that have to be made accessible and most importantly, affordable. And that's where our national health insurance scheme comes into play, because for the first time we have a government insurance that does cover all cancer. And yes, definitely there is a good way to go to even take that further. But I also do know that is happening.