About the Blues

Thanks to Deepika Padukone, there’ve been some open conversations about mental health and depression in our country. I have felt quite sad and helpless about our collective ignorance on this subject and our unwillingness to open ourselves to understand it. Mental health is dear to me because this is where I found my calling and also because I myself have suffered from depression in the past and had also been on medication for some time. Today, I write about it in a completely different context, but my grievances on the subject’s treatment in our society still remains.

It`s been roughly six months since I’d been diagnosed with cancer and have since been undergoing treatment. I have written extensively about the initial shock, the life changes and the various challenges that it brings. There’s one other thing that cancer brings to your door - its long lasting impact on your feelings and emotions. Depression and anxiety are well known side effects of the treatment. The cause of it can be traced both to the enormity of the disease and also to the side-effects that the medication induces. The medical community in the first world understands this and provides all kinds of support to patients in this area too. There are psychologists and psychiatrists, support groups, non-profits that offer different services to patients to help them deal with these effects. Cancer treatment in India from a medical sense may be comparable to the best quality that we find in the western world but it seems like we are quite clueless about the emotional battles that a patient faces.

Whenever I reflect over these points, I’m acutely aware of the geographical and societal context that I inhabit. We in India are still struggling with what Maslow refers to as survival needs. I acknowledge that we probably have classes of society who live in the first world, the third world and several intermediate worlds.

I would say my treatment started in the ‘first world’. I consulted with and got operated by one of the top surgical oncologists in the country. But even with him I didn't have a discussion about the emotional side effects of cancer. We had multiple conversations on the physiological issues that I would be likely to face. There was also no mention of support groups or about mental health professionals who look into these unique needs of cancer patients. Back then I hadn’t started the chemotherapy, so I hadn’t experienced any such feelings and was also not expecting them.

I have since moved my treatment to what can be called the ‘second world’ (from a service point of view, mind you, the treatment quality is still top notch). I began the chemotherapy sessions here and remember feeling the blues from around the second cycle. I panicked when it happened because I knew this monster will just add to my woes. I then researched a bit and read that this is a common side effect. The website I was referring to was a western one and advised me to speak to my doctor for her opinion. So that’s precisely what I did on my next visit.

The doctor looked at me incredulously when I suggested that it could be due to the medication. She impatiently said that it was also caused by the cancer and scribbled the name of a doctor I should now meet. To be honest, I dreaded the thought of meeting another doctor in the hospital. Everything takes many hours of waiting and my patience was thinning. So in my next visit, I asked for what I thought would be a middle path; a support group that may run in this hospital rather than another doctor. This brought about an even stranger reaction from my doctor. She looked up at me and asked “What for? Why do you need a support group?” Yes, this really happened.

Anyways, I’m doing all I can to deal with these blues. I read, meditate, try and step out, meet people etc. There are still days that overwhelm me. I feel quite hopeless and fail to see the point in all the things I’m doing.

All sorts of thoughts keep running through my head. I think about all the women I regularly meet at the waiting room. How must they cope with all this? I am privileged enough to be aware of all this and also to be in a metropolis where access to so many things is easy. Many of these women travel from long distances to access this treatment. I wonder if they even have the bandwidth to think about these issues. But that doesn’t mean they don’t exist.

I read a rather shocking article the other day about one of the least acknowledged, long term side effect for a cancer survivor: Post Traumatic Stress Disorder (PTSD). This is a condition of persistent mental and emotional stress occurring as a result of injury or severe psychological shock, typically involving disturbance of sleep and constant vivid recall of the experience, with dulled responses to others and to the outside world (Source: Wikepedia). It’s really not hard to imagine why something like this could happen to a cancer patient. The disease never really lets you off the hook. The cells may disappear but the thoughts just stay.

All this has led to the genesis of Maitri, an online community for people dealing with Breast Cancer. It is often said about Cancer that it is not just the person but his/her family and friends that go through it. All of us who are fighting this battle as an individual and family have so much to share which can help someone on a similar journey. Maitri aspires to be that platform where tried and tested tips, snippets and crucial advice that can assist breast cancer patient and their family is shared is shared. I hope over a period of time Oncologists, advocates, patients and their kin join in to make this a truly supportive community. May I request the readers of my blog to spare a minute to like and share this page. I hope that over a period of time, this will reach to people who really would benefit from being a part of this community. . https://www.facebook.com/maitrisupport

The absurdity called life

A couple of weeks back, something terrible happened to a dear friend. He broke his femur bone while out on a run on what looked like a fine Saturday morning. The incident was so bizarre that it left all of us wondering about the uncertainty  of life. The femur (the bone connecting your hip joint to your knee) happens to be the strongest bone in the body. It is very difficult to break it even if you are in a serious road accident.  My friend while jogging spotted a partially open manhole and swerved to try and avoid it. While doing so, he toppled on the sloped road. That’s really all that happened.

Next thing he knew, he is bed ridden with a huge cast, and a metal rod running through his leg in parallel to his femur with a million uncertainties about when he can begin living life as he knew it. He is by far the most social person I know, an active trekker and an extremely outdoorsy sort of guy.

This incident left me disturbed for several reasons, but primarily for the pain that such a dear friend has to go through. It also bothered me because it seems that the life that we so carefully try and put together is nothing but a bundle of absurdities. From childhood we grow up on a diet that life is some sort of a challenge with increasing difficulty levels. If you play your cards right, consistently do the grunt work, that challenge will start shaping up into a beautiful symmetry.

So since childhood this is what I did. I kept at it, telling myself that I will do better tomorrow. I always had a vision for a purposeful life, a life where I do work that I want to, and am in relationships that are meaningful. Obviously, my life was far from perfect but then there was always this lure that it will turn a corner. Brick by brick, I was putting together a life that was promised to me by important adults (successful people, celebrities, etc.), magazines and movies. And then came the news that rendered all of this meaningless. That made no sense and in a way told me loud and clear who’s the boss.

So today here we are, my friend and I and so many like us who have suddenly been thrown off the track wondering what to do next. I am not suggesting this in a sad or depressing way; far from it. If anything I am amused by it. These few months in my life have helped me unlearn many things I’d learnt about life. Today I just felt like putting together some of it.

1. You can only control as much in life: This is especially significant for control freaks like me. We may sit down to plan things to the minutest details but then one has to remember we are not living in isolation. Our lives exist within larger ecosystems and they all have a say in what will happen to us. We are a generation who are fed on a diet of "if you put your mind to it, you can achieve it". This
may be good for world progress and economic development but forgetting human frailties is stupid.

2. Cultivating acceptance will help us in the longer run: this can begin slowly, but acceptance like many other things is a habit that gets better with more practice. Some may feel it is a passive view of life but I truly believe that in the times we live in, change comes quickly. So the longer we take to accept things, the more it would hurt us. A meaningful life is also a life more accepting of sudden disruptions.

3. Find an anchor, and make friends with it. An anchor is what keeps us grounded, and gives us a sense of safety. It can be a relationship or a practice like meditation or running or playing a musical
instrument that you can go back to in troubled times. There should be something that you can turn to
in such times. It helps.

4. Keep ticking items off your life bucket list on a regular basis: Don't put too many things off until you reach a fictional life milestone (like getting a promotion, completing a degree or some such). Keep doing things that you like on a regular basis. Life cannot be lived in capsules of long weekends and mandatory leaves. Every week or so, there has to be something you do that enriches your life.

5. Make life a balance of now and the future: I read about this interesting research study many years back which said that after a devastating event like a terrorist attack or a natural disaster, people's consumption go up. People fear the uncertainty of life and that motivates them to buy that 50 inch TV that they had long been unsure about. There is a certain comfort in planning the future and
let's face it, not all of us are going to die or will have health scares or accidents. Even for such times, the planning that we so meticulously did earlier comes in handy. Having said that, life needs some
today’s and some tomorrow’s. Certain things can't be shelved for too long or they may never happen.

6. Do Good: Such a simple piece of advice but really we all are interdependent on each other more than we would like to be. We are often so immersed in our own drama that we fail to extend our help to a friend, colleague, acquaintance or a total stranger. I guess the good we do to each other is the single factor holding all this together. So do good, even if you are never going to see its returns. It's the rent we are paying for our time on the planet.

That’s all that I can gather right now. If you are reading this, please say a prayer for my friend’s recovery.
A!

An ode to Tata Memorial Hospital.

I am now done with two chemo sessions and for everyone who’s enquiring about it, I have this to say - So far, so good. I will write about my experience in detail probably after 3 to 5 cycles are done. I expect that by then, the side effects would have manifested quite a bit, and I would have a better sense of how I feel.

Today I want to write about something that has touched me in so many ways. It's about the hospital where I’m undergoing my chemotherapy.

Tata Memorial Hospital (or Tata Memorial as it’s popularly called) is a love story cast in stone akin to the Taj Mahal. In 1932, when Lady Meherbhai Tata died of leukemia after treatment abroad, Sir Dorab Tata decided to establish a similar institution in India. However, he too died soon after, but the trustees carried his mission forward and Tata Memorial Hospital, the Taj Mahal of Medical Sciences was born in 1941. You can read more about it here.

It is rare to find someone in India who hasn’t heard of TMH. In fact, the moment you utter the word cancer, TMH will soon find its way into the conversation with anyone you speak with. My first choice of a hospital to get treated (although strongly recommended by many people) was actually not this one. It was the hospital in my vicinity where I had my lumpectomy.That’s where I stumbled upon my surgical oncologist. Incidentally he spent many years working at TMH before moving to this hospital. I had my surgery done by him and then wished to start my adjuvant treatment under his supervision. My surgery went extremely well and my plastic surgeon completed the reconstruction with the finesse of an artist (another doctor I highly recommend not just for his skills as a surgeon but also for his gentle ways).

Life however had different plans. My tumor was HER2 positive. This meant that aside from chemo, I’d have to take an additional drug (called Herceptin) for several months. This drug is bloody expensive, with each dose costing much more than all the other medication that I’d be consuming. So on one of my appointments, I had a tough and painful discussion with my oncologist to get an estimate on my medical expenses. That is the backstory to how my relationship with TMH began.

While I write this post, I realize how hard it is to summarize my impressions in one single post. There’s so much that happens in TMH on so many levels.

TMH is located in central Mumbai spread across a large area. It has two wings, a general and a private. The treatment and medicines there are very subsidized, much more so in the general ward compared to the private.The first thing I’d noticed when I’d been there the first time was how sprawling and well maintained it is. Also, they’ve really tried to streamline things as much as possible. When you register yourself as a patient there, you first need to get a patient card made. This sort of card is probably what the government of India was aiming at when they launched the Aadhar card scheme.

This card that you make is your debit card and repository of all information about you. Payments can only be made through this card and the card is linked with your patient page that has all your details on their portal. My personalized portal doesn’t just display my basic details. It also has all my reports, my treatment plans, my treatment updates, everything.So when I am shuttling from one department to another, all that the personnel needs to do is to key in my ID number or scan the card and she would get all the details on her screen.

There is no way TMH could have survived without such smart use of technology. It is thronged by people from not just all across the country but the rest of the Indian subcontinent too (Bangladesh, Nepal, etc.). It may as well be called a mini Indian subcontinent for the sheer number of people present here at any given time.

One may wonder how a hospital can maintain its quality when dealing with such large numbers. I did have similar questions and that’s probably why this wasn’t my first choice. Would my doctor give me a patient hearing when she/he has so many patients waiting in line? Would it be too overwhelming to be surrounded my so many cancer patients of all ages, etc?

Let me try and deconstruct the doctor-patient part of my experience here. TMH has different sections for different type of cancers that straight away makes both the patient and the doctors’ job easier. It takes hours for you to reach your doctor as is the case for most of the things that happen at TMH. There would be 2 or 3 oncologists of the type that you are seeking and you could be sent to any based on where your file is.

You will first be seen by the residents who will note your history/ progress/ concerns and then be seen by the senior doctor. The residents remind me of one's I see on House M.D. or Grey's Anatomy as they seem to be bright, concerned and forever mumbling some research study or the other under their breath. When you see the senior doctor for the first time, she will spend some time with you in explaining the current status and the approach they would be taking. I have seen 3-4 doctors at TMH and have barely felt rushed. When you are an old patient and the concern that you came for is not so significant, it is possible the doctors’ impression will be conveyed to you through the resident.

TMH is in no ways is an easy experience to have. The fact that it is one of the few affordable cancer specialty centres means the volume of people seeking its services is forever more than any establishment can handle. One has to wait for everything for hours, from billing to meeting doctor to buying medicines or getting tests done. The access to doctors is not easy. Unlike your doctors in other hospitals, you won't have their numbers. It’s futile to call reception in an attempt to connect with them. Still every patient you interact with has so much gratitude and respect for the hospital they are in.

Most medical professionals (doctors, nurses, technicians) in TMH appear competent. They may not be the most pleasant people you interact with, but one will rarely feel shortchanged. I believe when one is at ease with the quality of treatment, the other things start bothering you less. The other thing that helps puts things in perspective for every patient who visits TMH is the awareness that so many of us are going through a similar experience .When I see patients braving the long waits and even sleeping on the footpaths for accessing the general ward, I feel what those of us in the private wards experience are really first world cribs.

Cancer is a seriously expensive disease. TMH makes it possible for so many people to access high quality and reliable treatment at a very reasonable cost. If this is not philanthropy of the noblest kind, I don't know what is. 

The medical team that works there must be constantly overworked because of the kind of numbers they attend to.I will not make tall claims that I have not met staff who didn't yell at me or weren’t impatient. If I was anywhere else, I don't think I would tolerate it. But at TMH, you empathize with not just your fellow patients, but also your doctors and nurses. They are reaching out to so many people in need, we can surely cut them some slack.

I guess TMH is not just a place where I access my treatment, it is also where I learn to look beyond me. It is a place that has already taught me immense patience and to be grateful in the most imperfect location.

I want to wind up this long article with a heartfelt thank you to the group that has not just given us one of the finest medical institution in our country but made it accessible to so many.

And miles to go before I sleep..

Last ten days have been pretty monumental. I again felt a lump in the reconstructed breast. Went to see my plastc surgeon, we decided to do a sonography and then what followed was nothing different from last time. My Cancer is back. It is in the same reconstructed breast but on the other side. The stage, how it feels, how fast its hradening is all similar to what happened three months back. The first time it happened, my doctor decided to do a partial removal of breast (Lumpectomy) and once all the diseased part was removed, they reconstructed it using muscles from my back. Post that I was advised to start Chmeotherapy etc. which I decided to opt out of. I instead was undergoing an Ayurvedic treatment for last two months.

This time things are different. Since the disease has come back so soon, they feel there is no option but to remove the entire breast (Mastectomy). They will do a complete reconstruction at the time of surgery. Before the surgery, I have been advised to start Chemotherapy, to shrink the tumor and ensure that the cells don't spread. I will be starting with Chenotherapy from next week. 

As one can imagine, there are so many feelings, emotions, thoughts that I am going through at this moment and all moments before this. The first and foremost being the nature of the disease and how I may have to embark on a path that I could never own completely. In the past ten days so many people have asked me that obvious question "But why didn't you do Chemotherapy". Some even had the tone tantamounting to " Are you stupid?". I wish I had an easy answer to that, even if I had, it is highly likely that the message will be lost in translation. I know a lot of you may be curious to know If I regret my decision now?. Honsetly not even one bit also this incident has not weakened my faith in the world of healing that is outside of allopathy. The choices that Cancer patients have infront of them are far from perfect. If you don't do anything you may die, Chemotherapy and Radiotherapy come with their bag full of side effects (side effects varies from individual) but are a patients best bet. The world of alternativee therapy is so vast andso fraught with inconistencies that finding a treatment that suits you and one you can trust is a challenge in itself. What makes these choices even more difficult is the uncertainty involved with all this. Cancel literature is full of people who have been miraculously healed and also who succumbed. There is no surity for anything. You can do nothing and survive and you may do everything and still die. 

I believe our decisions speak a lot about who we are as people. Where are we coming from. Having been disease free most off my life and developing a healthy relationship with my body has given me the confidence of its power to heal itself. I also understand that I must embrace my treatment and acceept it completely for it to work. May be it is time for me to loose my judgements about Chmeotherapy. This is what I need right now and I am hopeful this time I would not lie on the right side of statistic. Even if I do, thats allright. I am reminded of something my friend said to me when I asked her if I will succumb to enormity of this. She said " I know it is going to be difficult, but if I know someone who can rise above all this; it's you". 

So for now, I am making friends with Chemotherapy. Everyone's experience of it is unique and hence I am stepping into it with a clean slate. I know so many of you have been constantly praying for me. Let me tell you, even if does not seem so, it's working. I have never felt so grounded and grateful in my life. Like they say " Whatever doesnt kill you,makes you stronger."

Of Long Pending Thank You's

I was feeling terribly low since morning, sulking and snapping at anyone who gathered the courage to reach out to me. Suddenly the bell rang and the courier claus announced I have a delivery. I am one of those people who is forever expecting stuff that I've ordered from all sorts of e-commerce platforms. But today I wasn't expecting anything, no pending deliveries.

I curiously opened the packet and saw a lovely grey throw blanket in it. Suddenly it struck me that my friend had told be about something that she was sending and said "It will hopefully be helpful, and easy to bring on your hospital visits when the air conditioner is harsh". I was so moved seeing this thoughtful gift from a friend who herself is forever between three continents (may be two).

I have been at the receiving end of such generosity from the universe who chose to bestow it on me through many kind people who walk the earth. This post is a compilation of long pending thank you's for people who've helped me and still continue to help me deal with my situation.

• Thank you for being an Oncologist. From day 0 of my encounter with the disease, you've been around to answer all my queries, and oversee my treatments. You were patient enough to hear my  views even when you didn't at all agree with it. I am forever indebted to you and cannot thank you enough for taking out time.

• Thank you for sending me Eckhart Tolle's "Now". The moment it came to me was when I had started questioning the point of all this. I was so overwhelmed by the possibility of a future encounter with the disease that I had stopped appreciating the present. Also thank you for always keeping me in your thoughts.

• Thank you for giving me a virtual tour of Japan. I am so restricted in my movements that a glimpse of a world that I am not inhabiting was mighty refreshing. I think whenever I visit Japan next, it will technically be my second.

• Thank you for parking your car outside my house in case some emergency happens and I need a vehicle. It is quite a big deal, though you may never admit it.

• Thank you for taking me for a haircut. I desperately wanted to do something fun and change my look. You were so enthusiastic about the whole process and didn't cancel even though a friend was around and you were slightly unwell. I love my new look so much!

• Thank you for sending your favourite bag all the way from Canada. I am so surprised you remembered that I loved it and had the heart to part away such a gorgeous bag.

• Thank you for throwing such a lovely birthday party. I don't remember the last time there were balloons and streamers on my birthday. It is definitely one of my favourite birthdays.

• Thank you for the Kindle. On most days when I am about to hit rock bottom, I curl up in my bed and open my Kindle and I float and am slowly back to an okayish space.

• Thank you for the Ipad keyboard. I write most of my posts on it and don't have to carry my bulky laptop everywhere.
• Thank you for sending a pen drive loaded with the latest seasons of all my favourite shows and the bluetooth speaker all the way from Kolkata. I have forever wanted to own a speaker but never bought it.

• Thank you to all those kind people who come to visit me every now and then. The funny bit is most time we don't even discuss the elephant in the room. We talk about random stuff and real life problems and I feel normal all over again.

• Thank you to everyone who keeps checking on me. It's really hard to feel lonely and miserable when so many people keep you in their thoughts.

• And the mother of all thank you's goes to that person who has kept me in her healing space from the moment she knew I was about to start this journey. Every Time I am in distress she knows and I either get a text or call from her. My journey with Cancer would have been so different if she hadn't helped me see the "why" of it from the beginning. Essentially, the learning is this: Your body is communicating with you through disease and discomforts. Medicines of any form are there to cure the disease, which is necessary. But they're also killing the messenger. I am still understanding the message that my disease is trying to convey and hopefully the breakthrough will come soon enough.

I guess this is an ongoing post and I may have to do part 2 or 3 of it. It feels so wonderful to count your blessings. We should all do this exercise at least once a year, in sickness or in health.

Till I write again!

P.S: I don't like mentioning names on my blog but I know when you read it you would know it's you I've thanked.

P.P.S: There is no I way I could not thank my family for what they have done for me. I can see how this has impacted their lives and how it is changing them as people. I wish this didn't have such far reaching effects

Dear Life tread gently!

Many of us have an obsessive need to plan our lives. Brick by brick we put together experiences, qualifications, relationships, work to form a life that suits us. Then one fine day you are given this deadly diagnosis and all those bricks crash right before of your eyes.

Let me try and enumerate the ways Mr. C has changed my world.

1. Its been three months since I last did any work. My work often is the truest expression of myself. I feel extremely fidgety when I do not produce anything worthwhile (or atleast what I consider so). People with Cancer do go back to work while getting treatment. I keep telling myself that it's a matter of a few months and I would be back but still when everything changes, you secretly hope for a few things to remain the same.

2. I am so fiercely protective of my independence but whether I like it or not, this disease has inroduced me to all kinds of dependencies. Someone to take care of me, someone to go to the doctor with me, someone to collect my reports or arrange my transportation. Not even in my dreams, did I ever imagine that I would have to deal with giving away the remote control of my life to other people.

3. My mom would often tell me that I was her most expensive child because I always ended up in situations (school, higher studies, etc.) that cost more money. Little did I know that I would be her most expensive child even in illness. I think it's pretty well known that dealing with Mr. C is an expensive affair. Being the quintessential "jhola chhaap samaajsevak" (Community worker), I'd be budgeting with my income to even deal with a fever. This is way beyond all of that. Hence followed the financial dependencies that again is such a difficult thing for me to accept. I mean I would always lecture other people that one of the hallmarks of being an adult is to be able to afford yourself (needs, wants, etc).

4. Fear is always lurking around the corner. Always. Fear of the Mr. C coming back, fear of not catching it in the initial phases, fear of going through this all over again. There are days I am able to deal with it and then there are days I prepare for myself for the eventuality.

5.  There are so many happy stories of cancer surviors floating in the world but what probably gets buried in these stories are those moments of intense vulnerabilities. We all derive so much comfort out of the predictability of life, from knowing your payday to having a broad sense of how the year looks and how many long holidays one can plan. The blanket of predictablity is often removed from the life of a patient. All I know about is today. Everyday that I wake up feeling okay I say a silent prayer. I am forever prepared for new developments, to change course of action if something changes.

6. Foodie or food connoisseur has to be the most exploited phrase of modern times. So I would stay away from using these two words, but the truth is until my diagnosis happened, food was my longest lasting relationship. I was born into a Kayastha household (a community known for their love for food) in Lucknow ( One cannot talk about food in India and not have Lucknow on their list). I love reading cookbooks, trying out different cuisines and feeding people. Mr. C has changed my equation with food for life. I understand that many food items are crossed off my plate forever. These days when I walk and see people casually eating their food I feel a sense of envy engulfing me. Who are these people who can put anything in their mouth without worrying about consequences?!

May be this is the reason so many cancer survivors write books or blog about their experiences. Whether one likes it or not, it will make you rediscover your life and redefine your priorties. Some are lucky to find support on the way, others just have to traverse this terrain all by themselves. If you are brave enough to survive this, Mr. C will be benevolent enough to put a halo around your head and may be a book deal too.

Till I write again.
A!

The Cancer Etiquette

Since my Cancer diagnosis, I've been looking at the world from the other side of the lens. Before this, I was the friend or family member who was perplexed at how to support my loved ones in times of sickness and grief. We all know and understand what a difficult task it can be.

Should I call or text? Should I address the elephant in the room or circumvent the issue totally so the situation seems lighter? Should I pay a visit at the hospital or wait until the person is back home to meet him or her? Would this be violating someone’s privacy? What are the questions that are okay to ask? So on and so forth.

Now that the shoe is on the other foot, I'm beginning to get glimpses of what might be some of the appropriate things to do.  In the hope that this may help other people in similar situations, I am penning down my thoughts on cancer etiquette.

Before I air my own views on it, I would highly recommend everyone to read this article written by Kate Gross who was diagnosed with Colon Cancer and was told she won’t survive it (sadly she didn’t). Though written by a terminally ill patient and intended for people dealing with such a person, this is a useful primer for anyone who has a friend or family battling with disease. My most useful takeaway was this infographic she used.

_{Kate’s 'spiral’ plate (JOHN LAWRENCE)}

In this spiral, Kate placed different people along different arcs on the curve based on the proximity of the relationship between her and that person. So her partner and children are almost at the centre and farthest away are friends’ friends.

When visiting someone who is battling a disease, one must understand where they lie in the person’s spiral. The thumb rule is you provide support to the people closer than you and seek support from ones that are further away in the spiral. That seems so elegant in its simplicity. This way the patient would never need to console other people in their grief. And each of us can be pillars of support or be comforted depending on who we talk with.

Now for some of my observations on this:

1.   Every disease is different. Some have shorter cycles, others take a long time to be treated. Cancer specially is one of those diseases that can take anywhere between 6 months to many years to be treated (not considering recurrence and any unforeseen complications, etc.) The maximum support and wishes one receives is within the first week of the cancer announcement. With every passing day, less and less people will ask how you are doing. Even lesser would offer help for various tasks. If you really want to support your friend or family member, consistency is the key. How often you want to check on them is your call but writing endearing messages in the first week and disappearing after that just doesn't help or make sense.

2.  Many friends who were silent for many days finally wrote back and told me they didn’t know what to say. I completely understand where they are coming from but saying something is always better than saying nothing. I understand it’s a delicate balance and a daunting task but I guess that is what growing up is all about. You need to figure out a way to reach out. If you can’t think of what to say or write, read about it. And then try reaching out to your friend or family member.

3. Texting/ mailing/ letters are always better than phone calls, especially in the initial few days. Multiple doctor visits, dozens of tests, difficult decisions and above all coming to terms with the judgement itself exhausts the person. Written communication gives more control to in terms of when one is okay to read it and respond.

4. I am often quite divided about how I feel about external support because I want it and still don’t want it to overwhelm me. I am always happy to receive little notes of love and sometimes just a hey! But if and when there is an expectation attached to it, I get overwhelmed. I guess the patient and person have to find a rhythm where both are comfortable, more the former than the latter.

5.   Just because I have cancer doesn't mean I don’t want to hear what is going on in your life. I strive to let as little change in my life as possible. I would love to hear about your recent indulgence or heartbreak or in law trouble or stories of your little one growing up. I would love for you to share everything that we did before all this happened. Like the old times.

6. Lastly, we all are living on planet Google and there is no excuse for you to not read a little bit about the disease. It will give you a sense of what is going on with me and what the next few months look like. It also helps if I can have more specific discussions with you where I will be able to share more about what’s going on. Frankly speaking, it's quite tiresome explaining in minute detail about the nature of the disease in order to discuss, say, options that I'm evaluating at that time.

I have always been socially awkward. I am known to not pick up calls and disappear for months all together. Despite being this way, I would like to believe that I am not a fair weather friend and that when a friend needs support I wouldn't fail them.

If you have a friend or family you care for and she has found herself in a difficult situation, think and reflect what you can do to stand by them. Isn’t this what sharing meaningful relationships is about?

A!

The statistics of Cancer

I picked up Man’s search of meaning again recently. Actually it was gifted to me. In one of the initial chapters Victor Fankl writes about how Jews were reduced to some random numbers in the concentration camps. Who they were before, what were their names didn’t matter anymore. I am beginning to have a similar feeling post my diagnosis.

Doctors, journals, scientific articles are constantly trying to put a number to you. The chances of recurrence if this is positive and that negative, chances of survival under 40, 1 in 400 women aged 30 are likely to get breast cancer etc. etc. The list is endless. Everyone is trying to win the predicting game.

The sane cancer patient in me completely gets the importance of such numbers and how it all has come from researchers tirelessly trying to make sense of this disease all over the world. The not so sane one wants to scream my guts out. It will be two months since this mayhem started and with every passing day the only identity of mine that remains is of a cancer patient.

I am constantly between doctors/hospitals/medical journals which leaves me so exhausted that I have little time to do anything else. I am not permitted to go out alone. At max I can take walks here and there. There is so much paraphernalia attached with Cancer that most of my active time is spent in putting things in place.

I completely understand that it is just a phase, may be just a year. After a year I will be back on my feet like everyone else. Hopefully my life will be back to how it was. There is just one catch to it. Anyone who has read enough on cancer would know that it coming back is a good possibility. My recurrence chances post Chemo+Radiotherapy are 30%.(idiot stats!) There is a chance I will be back doing this dance again. There is also a slight chance that I may not live to do the dance again.

That is the nature of Cancer I guess. I want to coin the term “Family disease” for it. It just doesn't affect the patient but everyone around them. All I want right now is for life to go back to how it was. Where my family can go back to living their life and I have the space to do things that I absolutely love.

I am confident I will make sense of this mayhem and not reduce myself to some silly statistics.

A!

The ever changing tapestry of a Cancer Patient’s life.

So much has happened since I last wrote a post. Cancer makes for an interesting social experiment. Everyone has a story of some miraculous recovery that they have seen and would happily pass on references for the treatment centre or doctor or medicinal plant. The alternative cancer cure evangelism industry is truly alive and kicking.

Naturally, there is no way this wouldn’t have affected me. The biggest culprit in this is my mother. She is now a woman on a mission to cure her only daughter of Cancer. She is constantly reading what can help or talking to people around her if they know of a magical story. Once her arsenal is filled, she is ready to attack me with all kinds of suggestions and daily morning concoctions that look and smell like nothing you can imagine.

I myself am a firm believer in healing oneself naturally and hence am very amenable to such suggestions. I hear them out and have already tried two such things that lead me to a completely different path in my treatment.

The first suggestion that came my way was about a Tibetan medicine practitioner, Dr. Yeshi Dhondhen. He was the Dalai Lama’s physician for 20 years and is 96 years old. He has a clinic in McLeodganj. I would write a detailed post later on how to access him because it is quite tricky. His diagnostic methods are based on analysing pulse and urine.  You can read more about him here (http://yeshidhonden.com/)

The second suggestion was about The Health Awareness Centre (https://www.facebook.com/thacmumbai). It is a group of wellness/nutrition therapists based out of Mumbai. They believe in tackling illness through changes in our diet. I went there to understand how I can eat healthy to counter the effect of chemotherapy and other strong drugs that I was to consume. The nutritionist who met me, in a way, opened the doors for me to understand that there are other options to Cancer treatment. The Centre is a firm believer in reversing cancer through diet and has had many people who had opted for this path and have seen results.

After meeting them, I started reading about the alternatives to chemotherapy, and about studies that compare patients who opted for chemo with those who didn’t. I also read about alternative healing modalities etc.

After much contemplation, I have arrived at the conclusion that I want to trust the natural mechanism of my body to heal. It has to be the toughest choice I’ve ever had to make and it elicited enough hue and cry from all quarters. It just feels right, so I’ve decided to go for it.

I am not however going to be stubborn about it. If I feel it’s not working, I will happily jump the allopathic bandwagon and write odes to modern medicine.

If the readers of my blog know of anyone who has tried the non-chemo way, it would really help me to know about it. There is so much noise on the internet about this. The medical guys calling the alternative therapy guys names and vice versa. There seems to be little documentation that objectively lists down both options with its pros and cons. I’m hoping to do that over the next few months as meticulously as possible.

Till we meet again.

A!

Books that come to you for a purpose

You know there are days when I pause and reflect on the enormity of all that’s happened in a matter of weeks. And especially on those days, I cannot tell you how often I feel thankful for things small and big. People who showed unconditional support, things that fell in place and wisdom that showed up just when I needed it.  Atul Gawande’s “Being Mortal” also is one the books I’m grateful for. It couldn’t have come to me at a better time.

I’d picked this book ten days before the “Final Dance” (which is what I’m calling my cancer). When I look back now, the way it came about seems almost planned. I was travelling back from Bangalore to Mumbai and was already between two books. I went to buy a bottle of water and happened to take a stroll in the nearby book stall. For the last one year, I’d been reading praises about Being Mortal and I always felt I didn’t want to read this book as it would leave me depressed. I decided to pick this book for a friend, who I knew enjoys reading about medical stuff. When I finally sat in the aircraft, I was overcome with this enormous greed to start reading and there was no turning back from there.

Atul Gawande is an American surgeon, writer and public health researcher.  His books beautifully put together his observations on the medical practice and the interface between us and the healthcare system. While I was reading it, I was amazed by the voice that Gawande gave to the often neglected part of the healthcare system, the patient. I started reflecting on my own approach to family and friends who’d been unwell. Little did I realise that the book was actually preparing me for the unwanted intrusion of disease and the paraphernalia that comes with it.

The essence of this book is well described by its tagline “Medicine and what matters in the end”. Gawande discusses several aspects of patient care and his book largely focuses on the care of the elderly and people with terminal illnesses. But the scope of his observations lies far beyond these two groups.

The first thing the book brings about is something we’ve all witnessed or been guilty about: the complete overshadowing of the disease over the person. Once someone falls ill, everyone’s focus shifts to patient care, and what would physically fix the person back to normalcy. This probably works well with diseases that have a short recovery period. Can we apply the same principles of care to the elderly where being sick is a by-product of age or the terminally ill where living without illness is not an option? Do we completely forget the person and her identity with our single-minded objective of treating them?

Since I’ve been diagnosed, I’ve been feeling a number of these things every single day. I don’t remember a single discussion with my oncologist where he asked me about what is important to me, how attached I am to my work and how we can find a way to make all my worlds meet. When I was in the hospital, I was woken up by my nurses at odd hours to change my clothes or the linen.  The loss of control over one’s life makes the whole process wearier than it is. Even from the time, I’ve been back home, I’m constantly negotiating with my family about things I want to do to feel useful and to be active. I understand their concern but it’s a long road and so many things are changing around me that I wish at least some things don’t.

People with serious illnesses can have priorities other than just prolonging their lives. And I think our doctors especially should try to find them out from patients by asking them. We can then make more meaningful medical choices when those factors are also incorporated by our doctors while they talk to us about options of treatment.

The second aspect that resonated very deeply with me is the patient-doctor relationship. Gawande argues that ideally, a doctor must neither be paternalistic (the earlier trend) or just informative (how doctors tend to be now) but somewhere in the middle. They must jointly interpret the patient’s situation with them and arrive at crucial decisions together.

My oncologist, though an excellent doctor, leaves no space for dialogues. He seems to take the approach of giving only relevant information and laying out the options on the table. There is no space for interpretation, no back and forth discussions on what I’d like or what my priorities in life are. These days, I’ve started preparing myself before my appointments with him, otherwise I always feel overwhelmed and unanswered.

Yesterday I had to meet a fertility specialist and discuss my options before chemotherapy begins. I was so put off by her authoritarian approach when we spoke. For her I was just an organism with ovaries, and follicles. I was not a young person battling a difficult disease. Not even someone who’s having to make difficult decisions about weighing risks pertaining to conception in future.

The book poses some very important questions to all stakeholders involved in patient care. I recommend everyone to read it. We all are eventually going to be caregivers to someone significant in our lives. It leaves you with a little more sensitivity and empathy for the person who actually is at the centre of it all. It also has helped me in not loosing sight of the larger picture. However overwhelming and excruciating the process gets, I cannot forget the fact that this illness cannot and does not define me. 

Unknown Unknowns to Known Unknowns

The journey from knowing something’s amiss to finally knowing that it’s cancer is an arduous one. Today I want to take you through this ten day journey that I went through. Those ten days that flew by so quick back then were in hindsight life-altering.

There are several stages to be crossed before you can be sure of the verdict. Mine started with a visit to the gynaecologist. I wanted her to tell me that the lump that I was feeling was nothing; rather she told me to get a sonography and also some routine tests (CBC, Sugar, and Thyroid) done. She also suggested getting a pap smear done to understand the health of my cervix.  In addition to this, she noticed that the outer covering of my nipple was cracked and there was a discharge when you pressed it. Thankfully, she had the good sense to also send this fluid for further analysis.

Thus began the endless rounds of visits to the hospital and diagnostic centre for me. I went for my sonography. My sonographer asked me a number of questions on whether my breast hurts, whether I fell on it, or if anyone had hurt me in that area, or whether I had a family history of breast cancer. My replies to almost all of her questions were in the negative. She wasn’t too happy with this and recommended a biopsy of my left breast. This was the first inkling I got that something was seriously wrong.

Luckily I had an appointment for the pap smear with my gynaecologist right after the sonography. I happened to mention to her that my sonographer didn’t look pleased. It seemed like alarm bells rang in her head then. She asked me to immediately meet the oncologist and personally called him then and there to book an appointment for later that day.  All this was happening too fast for me to process any of it. I still thought (hoped, really) that all this would point to nothing.

Later that day, I met the oncologist who physically examined me and saw my sonography report. He felt the sonography images weren’t sharp enough and wanted better pictures.  It was now his turn to rush me to the next doctor (a radiologist this time) for sono-mammography. For the second time that day, I saw a doctor get in touch with his colleague right in front of me explaining my case. He was told that they were closing for the day. He insisted that they hold on for a while longer so that I could get a consult and tests done that day itself.  By this point, having met two doctors and after two long sonography sessions, I was exhausted. I still didn’t know what to make of the urgency of all of these fine medical professionals. I felt may be I have chanced upon a very efficient lot.

I went to the radiologist’s office, got done with this set of tests and proceeded to have a word with her. She’d just had a phone call with my oncologist and reported her findings to him. I asked her the only question that came to my mind then, “Does it look too bad?” and she said “Yes”. Even now, when I recollect, I feel I saw a hint of tears in her eyes. She bid me goodbye saying “We have seen many survivors in this hospital”. That sent shivers down my spine. It suddenly dawned upon me that this was ‘serious shit’.

As I look back, I feel the diagnosis of cancer is the most layered that I have encountered so far. Even after this episode with the radiologist, I was told by all of the doctors that nothing can be said with certainty until the biopsy. Along with the biopsy, the oncologist now also wanted me to get diagnostic tests done for every possible organ in my body.

Luckily, a week before all this mayhem I had picked up “A Suitable Boy” which happens to be the longest novel ever published in the English Language.  I was spending far more time in the hospital than at home then and Mr. Seth was great company (He still is. I think I’m going to rename this book as Cancer Book 1).

The biopsy reports came in a day later, and confirmed everyone’s fears (everyone here is doctors and two others who knew what I’d been up to for the previous few days).

I then also had to get a PET scan done as the last screening to verify if these unwelcome guests in my body were sitting anywhere else. Fortunately they weren’t.   

Nevertheless these various reports indicated that my cancer was fast growing and my doctor wasn’t comfortable waiting too long to act. So my surgery happened within a week of my last test. I’m still recuperating. The next stage (chemo) won’t begin until I’ve completely recovered from the surgery.

I have an appointment with the Rockstar (this is what everyone now calls my oncologist because of his towering presence and flying visits) in a bit. I received my path report (This report is prepared post-surgery and has essential information on the tumour, nature of cancer cells, and many other details) just last weekend. I would be discussing the report and the further course of action (Fingers crossed) with him.

In my next post, I plan to write in detail about my diagnosis and course of action. Everything about cancer is laden with jargon which I had to painstakingly deconstruct to make better sense of reports and diagnosis. I would be glad to share this with readers of my blog.

Stay happy!

A!