When I reviewed the book ‘When Thoughts Invade the Cancer Conqueror’ my belief in ‘DO NOT EVER SMOKE!’ just became stronger. With ‘No Tobacco Day’ coming up tomorrow, on 31st May, this was a great time to do an interview with the authors.
Three months before the appearance of the first symptom
Aditi: Tell me something about yourselves
Poorna: Both of us are the eldest children of our parents. Our nicknames Sivaram and Poorna. We are lovers of Carnatic music. Three of Sivaram’s cousins are professional Carnatic musicians. Value education more than all else as an enduring asset. Not only Sivaram but also his brother and both our children are IIT alumni.
Sivaram: So also is our younger daughter-in-law. Like most septuagenarian parents homes, at this point in time, all of them with the four grandchildren reside 15,000 km away. Thanks to Skype for small mercies. The eldest will be entering University in the US come September. We’ve been there four times for a cumulative period of two years. So seen it all.
Poorna: His father was an Additional Secretary to the Government of India; mine was a Sales Officer with India Cements.
The book that they wrote
Aditi: What made you write this book?
Sivaram: The genesis of the book is the understanding we had, bearing in mind our communication skills, with our surgeon that we would be open to counselling any future bladder cancer patients he would refer to us. In this sensitive area, we understood that anonymity with contacts restricted to just telephonic conversations would help the patient, caregiver, and counsellor to open up. Surprisingly it did. So we thought we would pen our experiences. We had this habit of status updates on Facebook, so we created a group with over a hundred active doctors and medical students (though the actual membership threatened to touch 400) and about 50 cancer survivors and caregivers with several questions and answer sessions to firm up the draft of the book and finalize it with minimal of medical blunders and including all that a bladder cancer family might be interested in.
Poorna: Our firm conviction that smoking was the sole cause of his affliction, and that some more concrete awareness building on what actually one of the consequences is was deemed essential. Too much of superficial blah-blah, and skirting the issue with pointless statutory warnings, was getting the country’s youth nowhere. So we decided to write a no-holds-barred book and distribute it free to all those who ask for it. Our first target was a 32-page monolog.
Aditi: Why didn’t you approach any traditional publisher to publish the book?
Sivaram: We did. But it was taking too long for them to respond; and multiple calls from Indiana, USA and by the time Partridge said yes we’ll do it, it was all over bar the launch ceremony. Our local Cancer Centre and Research Institute sponsored and hosted the launch.
Poorna: And our goals had progressed from a purely public awareness booklet to a 100-page novella. And you will find two streams, one repeatedly saying do not smoke. A parallel stream screams, a diagnosis of cancer is not the end of the world. If diagnosed early, it can be cured. So the target audience is not only smokers, and potential smokers, but also the entire cancer community of patients, survivors, and their caregivers. There is enough of surgical details for the medico to update his notes too.
Aditi: Why did you write this as a ‘fiction’ with a ‘fictional character’ in it rather than the autobiography which it really is?
Poorna: We started writing in the first person but found the emotional barriers creating more than just a strong writers’ block. We ended up mostly in tears, very often with a prayer of thanks to God. Also while finding fault with the doctor, the nurse, or the hospital or the landlord, the auto drivers or the domestic help, we were not happy with naming them and dragging them in. We are not politicians (literal or metaphorical). So we started the camouflaging of places. Malgudi of RK Narayan fame first came to mind. (Someone even mentioned it might be a breach of copyright to use that town name!)Then we changed the names of the characters too. And so it became a “fiction based on real life experience of the authors”. Another reason was that so many people helped us during the darkest months that if it were a biography and some names got unintentionally left out, the book would cause more issues than it sought to resolve!
Aditi: Was it difficult to revisit the memories and write about it?
Sivaram: It was really tough, especially when we first ventured to write it in the first person, we couldn’t go more than a few sentences a day, at times. I guess this is more than just writer’s block. It is an emotional bar. But then we put in all on Facebook, for starters, day on day, and formed a book “copy” at the end of the week. It was a year and a half in the making.
Poorna: It ran concurrently with each surgery and discharge to home. We wanted to put in all the detail while the doctors’ briefings were still fresh in our minds; for it is necessary to know all the suffering one goes through. Statutory warnings are just that and to no avail.
Aditi: How fearful is the fear of death?
Poorna: When you are expected to come out of surgery in four or five hours and there is no feedback even in the seventh hour all hell breaks loose. It is frightening, seems like you are at the deep end of a tunnel. All sounds echo from far away. Wonder why they delay announcing the “inevitable”.
Sivaram: At the same time occasionally we do wonder about the raison d’être of our continued existence. And the next Skype call and the associated images of the grandchildren answer your question.
Aditi: How important is family support when a battle for life is on?
Sivaram: Loneliness can drive you really mad. You need some people who just listen to you, and a case like this you need empathy, not sympathy, pity nor a ”you so what you reap” attitude. You won’t believe it; we go to the ATM and just keep staring as the PIN number just refuses to come to your memory. You get into a cab and just forget where you wanted to go.
Poorna: I had to get to a new town and set up home for six months for the duration of the major surgery, recovery, and rehab and you need every bit of family support to get started and keep it on an even keel even while spending twenty hours a day at the hospital. You need the family to take turns at the hospital at least to relieve you every day for a bath and breakfast.
Sivaram: Most others may need folks to contribute to the kitty substantially, that was, fortunately, not an issue for us so far, Touch wood.
Aditi: Was there ever a moment when you felt like giving up?
Sivaram: You put it mildly, yes, suicidal ideations, yes. Fortunately, no further action on that front. Sheer helplessness literally gets on your nerves.
Poorna: Two weddings in the family, we just couldn’t think of going and we are the eldest couple. The need to get back home in three hours whenever we go out is still very frustrating.
Just after the first surgery
Aditi: What kept you going in the darkest months?
Poorna: We got out of the doldrums by venturing into running a boutique for women’s apparel and imitation jewellery as soon as he was fit to move out of the house. If it wasn’t for this we would have gone mad. This keeps both of us engaged and not brooding too much over what we have been through.
Sivaram: My generation, those born in the 1940s, I believe it was peer pressure. Everyone around you was doing it. You didn’t want to be the odd man out. It was a fad, the in thing!! And once the addiction got into you, you were truly trapped. The same goes for alcohol or drugs.
Aditi: When people know the adverse effects of smoking, why do they continue?
Sivaram: The first reaction is it cannot happen to me. Cancer can come from so many other risk factors. Mine is a tightly packed cigarette brand. Mine is filtered. Mine is Kingsize. Ad infinitum. One always tries to justify it. I guess that is why it is called habit. If you say there is a 55% chance you will get cancer, the smoker always believes he is among the 45 who scrape unharmed. Half full vs half empty syndrome.
Aditi: How difficult is it to give it up?
Sivaram: I did it, so it is not impossible. Did it too late, so still had to pay for it. Your fingers itch to be holding something, to doing something all the while. The biological withdrawal symptoms are terrible but surely less than all the trauma of going through cancer. We thought we had ditched it but came back three times. The fourth occasion we were successful.
Aditi: What are some of the best ways to quit?
Sivaram: I’ll stop bit by it and taper off is the biggest hoax. This never works. I shan’t buy it wholesale, but one at a time is another ruse that doesn’t work. No smoking at home again fails for then you go out more often. So what worked for me, is to cut myself off of other smokers. Of course, explained to them this is why I am cutting them off for a while. Stayed confined to home for a fortnight on leave; then thought of the children and wife who would suffer from passive smoking if I lit one. And it worked.
Aditi: This year’s central theme for the ‘No Tobacco Day’ is passive smoking. What, do you think, are the adverse effects of passive smoking?
Sivaram: The smoke that emanates from the burning end of a cigarette has higher concentrations of cancer-causing devils and, therefore, is more toxic than mainstream smoke. The particulates it carries are much smaller. So they make their way into the lungs and the body’s cells with far greater ease. So all those people sitting around the smoke inevitably breathe in such smoke and accumulate nicotine and several toxic chemicals the same way smokers do.
Poorna: The more time you spend in such an environment, the more smoke you breathe, the higher the levels of these hazardous chemicals in your body: the same devil that smokers inhale. Significantly, there’s no such point as a safe level of exposure to secondhand smoke
Sivaram: Secondhand smoke has more than 7,000 chemicals, of which at least 70, tar being the most well-known, can cause cancer with a high degree of probability. More importantly, some of these can be harmful in ways other than cancer.
Poorna: It affects the heart and blood vessels, increasing the risk of heart attack and stroke in non-smokers. Some studies have linked passive smoke to mental and emotional changes that manifest as symptoms of depression.
Sivaram: Since the non-smoker’s body system is not acclimatised to the ‘smoking environment’ it reacts in a more detrimental manner to the smoke than on the smoker who is already familiar with the smoke-filled atmosphere since some adjustments in his body system have already occurred.
Poorna: There is another devil to the passive smoking effect. The non-smoker gets passively hooked to this type of environment , feels suffocated in an air-conditioned area, so revisits the smokers’ den often to repeatedly smoke passively. In the long run, he converts himself from an addict of passive smoking to one of active smoking!
Aditi: If this is what happens in cases of passive smoking, I shudder to think what happens to those who smoke!
Sivaram: Don’t even ask! By the way, smoking can also cause erectile disorders in young males leading to marital discord. It also is the leading cause of limb gangrene leading to amputation. (Thrombosis Angiitis Obliterans)
Aditi: And breast cancer? Can smoking lead to that as well?
Poorna: It is known that tobacco smoke is carcinogenic to the human breast because some of the carcinogens, such as benzopyrene, that are present in tobacco smoke, induced tumor formation in breast epithelial cells.
Sivaram: What is less clear is when and how this exposure causes cancer in women.
Poorna: If passive smoking was a major cause of breast cancer, the epidemiologists would have found it by now, and shouted from all the rooftops.
Sivaram: It’s been proved to be causative. However, the risk of cancer of the breast is not as strong an association as with lung, larynx, or the bladder. Nevertheless, the researchers who are convinced that the data support a link between second-hand smoke and breast cancer counter that they do not claim that such exposure is the major cause of breast cancer, but simply one cause that many women can easily avoid.
Poorna: And therein lies the need to take cognizance of this real possibility.
Aditi: Do you think that media campaigns and graphic warning on cigarette packets really curb smoking?
Sivaram: I wish it did. For one, I do not think anyone ponders over the images on any product packages, more so of brands that you have always been using. This is true for all products. With penal taxes imposed on tobacco products year on year, prices have been soaring and my belief is that minors buy cigarettes one or two at a time and not a whole packet.
Poorna: For now we need to step up imagery in our statutory warnings even in the movies and TV serials where there is more scope for it to be noticed. Font sizes also need to be specified
.Aditi: What new ways would you like to spread the message that smoking should stop?
Poorna: One needs to include a chapter on cancer and its genesis and cure in the school curricula. Get into some of the gory details. I don’t see any of these runs for cancer awareness doing any good other than publicity for the sponsors and a few VIPs who grace the occasion. Do doctors have the time to spend with the public? They say they don’t; we believe they should find.
Aditi: Why do you think cigarette manufacturers don’t stop making cigarettes?
Sivaram: Unemployment – what will all the plantation workers and the kids rolling the ‘beedies’ do? It is a big industry that no one has as yet found the courage to dislodge.
Aditi: Do you think the government should give more incentives to farmers to stop growing tobacco and grow other crops? Why isn’t this happening?
Sivaram: This is on many people’s wish list, but the lobbyists are too strong. The amount of pressure to prevent the amendment on the sale of cigarettes to minors declared a crime was simply incomprehensible.
The flyer that was used in the run up to the launch
Aditi: Is there any message that you would want to give to your readers?
Poorna: Don’t smoke, ever.
Sivaram: And if you are already into it, stop immediately, go cold turkey. Watch out for that red spot in your urine.Take an abdomen scan and see a urologist ASAP on sighting blood in the urine. Bladder cancer can be cured of diagnosed early enough. We believe we have got that message across in our book.
Poorna: And oh, yes. The book we are talking about is entitled ‘When Thoughts Invade the Cancer Conqueror’ and is available on Flipkart and on Amazon too. We are the authors – Nilakanta Siva and Rajalakshmi Siva. Here are the links
Aditi: Thank you so much for spending this time with us and sharing your knowledge with us. I really hope that more people buy your book and at least one person quits the cigarette after reading this interview.
Poorna: We hope so too. Blessings to you!
Aditi (smiling): Thank you Ma’am.