Niyati Tamaskar's Blog, page 3

What will People Say?

We have this famous phrase in Hindi log kya kahenge? Which translates to ‘what will people say’, it implies that one must care about what people think and say about them. Ramayana, to me, is the epitome of log kya kahenge. Remember the Trial by Fire story about how Sita needed to prove her purity by walking through fire just because public opinion? To my dismay, the Ramayana continues this theme.

Post agni pariksha (fire test), Ram and Sita rule over a prosperous Kosala Kingdom. We are then told wonderful news that Sita is with child! One day when Ram was on his rounds, he overheard a washerman aka dhobi throw his wife out of the house saying, “I’m no Lord Ram, who will allow an adulterous wife to stay on.”* Ram is troubled by this passing comment and decides the best way to quell this kind of talk is to banish the pregnant Sita into the forest. He wants people to know he would never stay with an unfaithful wife. If Lord Ram is so susceptible to ‘what will people think’ what chance do us mere mortals have not caring about public opinion but instead doing what is right for us?

*(Digress: Ramayana tells it’s readers that the dhobi’s wife was out when inclement weather restricted her path back home. She finds shelter in another man’s home and when conditions are better returns home. Main-man-dhobi assumes she has been unfaithful and kicks her out. Once again in the Ramayana we see that women can’t be trusted, wives need to prove their chastity while the husbands can do no wrong. No one questions what the dhobi was up to when his wife was away.)

Back to Ram, he decides the best way to tame wagging tongues is to banish Sita into the forest. The readers at this point in the Ramayana are expected to have a memory loss of the agni pariksha event and that Sita had already proven her purity. Ram is more worried about what people will say than doing his duty of an ideal husband and defending his wife given that she passed the chastity-test.

It gets worse, Ram doesn’t have the courage to tell his pregnant wife about this decision. He has brother Lakshman take her away and when they are deep in the forest, it is Lakshman who delivers the news with a heavy heart. Left in the forest, Sita needs to fend for herself and the unborn child. A sage named Valmiki opens his home to Sita, which is where Sita gives birth to twin boys. Was the devoted loving husband there to care for Sita during the pregnancy months and was he there for the delivery? Upon news of the twins does Ram drop the banishment nonsense and come to her to provide postpartum support? Rhetorical questions. The boys only meet their father when they are 13. Sita single parented twin boys from pregnancy to teenager years. 

When the twins finally meet their father, Ram asks Sita to go through agni pariksha once again to prove her celibacy. Sita has had enough, she hands over the twins to Ram and decides to end her life.

How do I make sense of Sita’s life? I have heard lofty explanations of curses, and karma but when Ramyana is played out either on a television series or the stage, the reenactments don’t include these multilayer multigenerational explanations. On the surface, women are assumed adulterers, the onus of chastity is on the wife alone, the female protagonist lives a life of suffering, the male hero is more concerned about ‘what will people say’ than defending his wife.

Simply put – Ramayana’s moral code, when it comes to the treatment of women, is not something I can come to terms with. Does anyone else share my anguish?

Trial by Fire: The Ramayana

Recently Hindus all over the world celebrated Ram Navami, the birth of Lord Ram. In recognition of the festival a group of us had an insightful discussion on the Ramayana. This revered epic in Hinduism is, what most say, the moral compass of Hindu society. It also serves as a guidebook for relationships as it exemplifies the reverence children should show their parents and the sanctity of the bond between a husband and wife.

There are aspects of the Ramayana that are beyond my understanding. In this post I would like to open a dialogue on the ‘Agni Pariksha’ (Trial by Fire) chapter and welcome your take on it.

Background: Sita was abducted by demon king Ravana, taken to Lanka, where she spent a year before being rescued by her betrothed Ram, his valiant brother Lakshman and the ardent devotee Hanuman. When Ram and Sita were reunited, it was a joyous occasion for the entire kingdom. However, the celebrations were marred with mistrust. The subjects of Ram’s kingdom, Kosala, questioned Sita’s purity. Was Sita still a chaste woman, worthy of becoming Queen? Afterall, she had been with another man, one who is not her husband. Kosala’s citizens demanded that Sita walk through a burning pyre to prove she is unblemished. Ram obliges and Sita is set to do the Agni Pariksha. She passes the test; the fire doesn’t harm her. Everyone is pleased, Ram and Sita are reunited.

Agni Pariksha image from NewsGram

I have two profound issues with this chapter.

Problem #1: When these demands were made of Sita, why didn’t Ram step up for his wife’s dignity? Ram could’ve told his subjects that he trusts his wife and will not have her walk through a pyre just to tame wagging tongues. But tame those tongues he does.

The counterargument I’ve heard here is that Ram wanted to set an example for his kingdom by doing the right thing and hence asked Sita to walk through fire. I stand down. But this brings me to my next point – Just as Ram let his wife walk through fire for the sake of moral values, he too could have shown his subjects that he will prove the same. The chastity pact is a two-way street… in today’s terms equal pay for equal work, similar punishment for similar crime.

If we are to assume Sita digressed, why then are we also to assume Ram did not? A simple Agni Pariksha could uphold Ram’s character. But Ram doesn’t put himself through the ringer, a test we know he would’ve passed. I can’t come to terms with a devoted husband who fails to defend his soulmate, one who succumbs to the rumor mill, and as King doesn’t advocate for equality between a husband and wife.

Problem #2 is the definition of purity, chastity and virtue in this story. It is undisputed that Sita was abducted by Ravana. Abducted i.e. taken away by force or deception, both true in this case, Ravana deceived and used force to kidnap Sita. While in captivity, if Ravana had been physical with Sita, it would have been against her wishes*. Sita was wholly committed, in mind body and soul, to Rama. Whether or not Ravana touched her is secondary. She did not harbor feelings for Ravana, or any other man for that matter. Sita had no control over the physical turn of events that lead to her abduction, which even the mighty Ram and his army couldn’t avert. Why then does the abduction taint Sita’s honor? She was preyed upon by Ravana. In today’s context this is victim blaming, regardless of consent we are saying the woman is at fault/ is dishonorable. I have a hard time reconciling this.

Human visits Sita in Lanka image from NewsGram

I leave you with this, the beauty of Hinduism is that I can read a text and question it. I can have rich dialogue, garner popular support or disagree in minority and still be a practicing Hindu. My faith is not a proponent of blind following. I come to the table with an open mind, be certain I will challenge and question but with a shared goal of learning. Looking forward to comments, both in agreement of my moral dilemma and in opposition of my understanding of Agni Pariksha. Please be kind in your communications.

* It so happens that Ravana didn’t violate Sita even though he had access and opportunity. What does that tell us about the bad guy in this story?

Who is My Chief Engineer?

SIO2022 Conference posts continue, I won’t blame you if you’ve tuned me out at this point. I think this is my last one. If I do any more, I’ll need to give SIO a category of it’s own in my blog. And if you’ve noticed only things close to my heart, get a label – motherhood, travelogue, Hindu festivals…

In my post on Human Connection I mentioned the conversation I had with John Cho about survivorship. Before we got to survivorship, I wanted to talk about treatment. I told John it took less than forty-eight hours after the diagnosis for my husband Nuwan and me to realize that we were well in over our heads. I called my neighbor, dear friend, and OB who delivered both my children, Degaulle in (yet another) moment of desperation and asked, “Who is in charge?” He told me I was. How was that possible? How was I supposed to navigate the complex world of oncology? Nuwan and I knew nothing about cancer, and yet we were supposed to pick doctors from the list of providers near us. The analogy I used was that of a chief engineer. I told John, “At work when a new engine program is launched, the technical team is divided into subsystems such as controls and calibration, air handling, performance et al. Every swim lane reports to the chief engineer who is the technical lead and decision maker. The performance team can suggest their plan, but it might push air handling to it’s limit. The chief engineer keeps an eye on subsystem interactions, dependencies and optimization before making the call. All that for an engine! But for something as complex as cancer treatment I didn’t know who my chief engineer was!”

Degaulle had my back, he understood how overwhelmed we were. I didn’t know which set of doctors to entrust my life with. I didn’t know if I needed to go MD Anderson, some university hospital or would the local cancer center suffice. (At this point I had no idea of standard of care and why should I? I was 34) Degaulle reassured me, “Niyati, I will take care of everything. I will get your appointments sorted and the physicians aligned.” He got me an appointment with Dr. Zusan for breast surgery, Dr. Wagner for medical oncology, and Dr. McMullen for radiation. He was spot on with each recommendation, as evident in the photograph below. If you are wondering about my hunchback and moon face, this was the waxing phase, I was much worse.

Radonc McMullen with his favorite brown sister he never had

Dr. Zusan’s was the first appointment we had post diagnosis. She wrote out the tentative treatment plan – neoadjuvant chemotherapy, followed by surgery and radiation. At this point I assumed she is the chief physician who will line up the treatment. 10 days later we saw her again for my port. But that was it, we didn’t see Dr. Zusan for another 2 and ½ months, at the half way point of chemo because I was under my medonc’s care. Zusan wasn’t my chief engineer.

It bothered me that during treatment it wasn’t visible to me that my doctors were speaking to each other. I understand cases are discussed in tumor board (note: the polar opposite of the joy brought by a cheese board, and way more complex than a chess board; the only two boards I knew before cancer). But how does it work when you’re using two different hospital systems, 35 miles apart? I was bringing work life into real life and looking for the chief physician as the coordinator between medonc, radonc, surgery and physical therapy.

John told me, the way he treats his patients, is that he is the quarterback, and his patient is the ball that will get passed from one specialist to another. To me that implied John is the coordinator/ leader of the team. I wasn’t sure who was making my overall treatment plan. Maybe this is where integrative oncology comes in, a one stop shop for comprehensive care. In other conversations people told me it is the job of the nurse navigator. It became apparent that this depends on how the hospital defines nurse navigators and the resources they’ve put in training the nursing staff.  I felt like I was my own navigator.

I’ve wondered how do patients who don’t have a Degaulle in their corner sort things out? Nuwan and I are a solid team, how do unmarried/ single people do it? And if this was so hard for two professional engineers, how do non-STEM patients navigate? What about countries where standard of care isn’t strictly implemented? So many questions… sigh.

There you have it my friends; information overload, knowledge transferred, experience shared from SIO2022. I promise to be quiet *cough cough* for a minute *cough*.

The Pandemic Burnout

Dr. Edward Creagan was one of the keynote speakers at SIO2022. He is an professor of oncology, best-selling author, pianist, marathoner… to name a few. His talk was about physician burnout, stating some of the reasons for it and providing coping mechanisms. He started with an attrition event in 1996 where Mayo lost 40% of the Cancer Providers within a year that took a 100 years of experience out the door with them. Dr. Ed went on to research and studies that were conducted after and shared some of that information.

He cautioned SIO attendees about the perils of working on lack of sleep, while giving tips on how to be well rested – routine bedtime, disengage from blue light an hour prior to bed and use eye masks to block out all light. I was reminded of a book I read a few years ago called Why We Sleep by Matthew Walker. Backed by science, this book was for lack of a better phrase, eye-opening. There was a time where people proudly shared that they needed only 4-5 hours of sleep and utilizing a good 20 hours of their waking day to overachieve. I am glad books like Walker’s and talks like this are debunking this nonsense.

Dr. Ed also talked about the misnomer of multitasking. When we digress under the guise of multitasking it takes us 25 minutes to get back to the task on hand. He then gave a true-life example of the devastating result when a surgeon removed the good kidney and left the bad one behind. The reason this happened – the surgeon was distracted by a page. During this lecture on the myth of multitasking, I was, drum roll please, multitasking! I wanted to see who had the highest burnout rate within the different medical specialties. I assumed ER and OB but needed data to back me. I was also constructing a question in my head on what I wanted to ask. One might wonder what parts of the talk did I miss when I was doing that, thinking we will never know. Sadly since SIO shared all the video recordings, I know exactly where I tuned out.

One of greatest things I learned from Dr. Ed wasn’t oncology, burnout or medicine related at all. It was his crowd control. When his jokes didn’t garner a hearty laugh, he would say things like, this joke works well in Vegas, this is my money slide, get my limo ready (was he serious there?). Alternatively, when he got a big laugh, he would generously praise the audience saying how smart we were and how the joke didn’t land at Mayo. Humans can be so easily manipulated, I felt good about myself and the collective – we were smart, we got his jokes. I suspect this isn’t his first rodeo.

He showed us a couple pictures of his dogs through the story telling which always garnered an aww. Those pet pictures were tied to some advice, ask your patient about their pet and out come the pictures and glorious feedback surveys. I could relate because that’s me when my care team asks about the kids. If you’ve watched the Croods (an intellectual film, documentary even, about the evolving human) there is a scene where a lesser human asks the homo sapien, “Whats a pet?” the response is, “It’s an animal you don’t eat.” To which the lesser human says, “That’s what we call children.” The cancer care team sees pictures of my two, unprovoked. It’s no different than the pet response.

Dr. Ed ended with the three keys to the kingdom: Honor thy priorities, do tasks in blocks of time, get a good night’s rest, every night.

I had a question ready to ask him. I just needed to gather a bit of courage, for the people that went before me were neuroscientists, rocket scientists, and presidents. I started my question by introducing myself. Unbeknownst to me, the imposter syndrome had me saying “unlike most others at the conference I am not in the medical field.” I followed that with my question about tools to reduce burnout rate based on medical specialty. After answering my question, Dr. Ed asked me what SIO could learn from me, picking up on the not-in-oncology comment I made. The imposter was well squashed at this point, I told him and the attendees that I was an AYA breast cancer survivor, that I had done a TEDx Talk on the cultural bias and stigma associated with cancer. And that I had self-published two books. And even though I didn’t have a backing of a publishing house and their marketing team my first book was recognized by the Forbes magazine as a must-read. Dr. Ed was well impressed and audience applauded. I won’t lie, it felt real good. Maybe I really did belong here?

Human Connection at SIO Part 2

My not-knowing-anyone status changed on day 2. As I made my way towards the stage, 10 minutes to panel discussion, I was approached by an SIO member. He said, “You must be Niyati” as he gave me the warmest hug,“I’m Santosh”. Santosh thanked me for sharing my story, and being here at the conference. I asked him if he had seen my TEDx Talk? To which the response was, “I’m the one that approved all the content for SIO.” I looked at his name tag and it finally rung a bell. Dr. Santosh Rao, oncologist, professor and president elect of SIO. He could’ve said I’m president elect… umm ok people don’t do that. He could’ve introduced simply himself as Dr. Rao. How do we teach humility like that? We were already on a first name basis. He did see my TEDx talk and it resonated, I felt ready for the panel discussion.

Post- talk, a fair number of people came up to me, I know I’m going to miss a few as I the encounters.

John Cho came up to talk to me about survivorship. He introduced himself as an oncologist. It’s only when I looked him up did I read that he co-founded the CCHC New Bern Cancer Center. Again, a lesson in humility. John thought, as did a few others, that being an author and speaker is my day job. I told him I’m an engineer, to which he said he was too! Who goes from a bachelors and masters in engineering to pursuing medicine and becoming an oncologist? I know of only one other such person with a bonkers path to medicine, our friend Nathan George from Peoria IL – Caterpillar engineer turned ER doctor. John and I spoke about life, family, and the work we are doing in field of cancer, mine of course is in no official capacity. We are now in touch.

Another unique connection I made was with Synphen Wu. I noticed her during the conference, she often came up to the microphone to ask questions. If you know me at all, you will know that’s my thing, asking questions. Synphen is a neuro-oncologist at Kettering Sloan. She was fascinated by the cultural bias associated with cancer and we chatted for a while. She shared a bit about her personal journey. Synphen gave me her email address (personal not work) and asked me to stay in touch. Even added that if I’m ever in NYC to visit her, which was really generous of her.

The only person I met from the homeland, was in fact from Mumbai! Ritu Lapsiwala and I spoke about knowing this stigma associated with cancer all too well. And while I was in conversation with Synphen, Ritu found me and got my cell phone number after which she promptly messaged me. We are now in touch and Ritu is graciously offering a second opinion to a friend (young mother) who was recently diagnosed with breast cancer.

I met a Pakistani couple and man from Afghanistan, both men named Mohammed. We had brief but wonderful conversations.

Lastly, during a social event that evening at Taliesin West while I was in the food line, a fellow homie jumped the queue to come talk to me. Or he used me as an excuse to get to the food faster, we shall never know. He thanked me for sharing my story and echoed that even as a second generation American he sees other Indians doing the same, hiding their disease and it baffles him. Viraj also dished some advice on staying physically strong i.e. strength training for better health long term. Considering I had just given unsolicited advice to a group of professionals in a field where I carry no authority… this was well deserved.

Frank Lloyd Wright Foundation: An evening at Taliesin West

In those two days at SIO2022 my network grew exponentially. I was granted access to a subset of people that I would otherwise never have an occasion to interact with. I am thankful for the opportunity and humbled by the kindness I experienced.

Human Connection at SIO Part 1

I wanted to conclude my SIO2022 Oncology Conference series with this post but ehh… there might be a post or two left in me. Thank you for indulging.

On Day 1, I got there around 6 pm which meant I missed most events of that day. My travel was brief, mainly because I don’t like being away from the children. The plan was to get room service and call it night. As I was making my way past the lobby I noticed that the SIO group socializing at the poster session. I was tired from a long day, long flight, many hours at the airport pre-flight because of logistics (husband needed to be back for children’s pickup) and the 3 hour time difference, my body was running at the energy levels of an exhausted, working mother at the end of the day. But I didn’t want to miss this opportunity to introduce myself and get to know some of the attendees / organizers. I swiftly checked in, changed into a dress, put on some heels and made it to the poster session. Thank you adrenaline.

I knew exactly whom to seek out at the poster session. A week or so prior to the conference, an oncologist named Rushil Patel contacted me via LinkedIn saying he was intrigued by my work and urged me to stop by his poster. He had done a project on South Asian women with newly diagnosed breast cancer and their use of integrative medicine. He is a second generation American, and a practicing Hindu. Recently he received a ‘’ grant to carry on his work in understanding palliative care in the Hindu community that live in the Charlotte area. We had a meaningful conversation about my journey, and how aspects of it intersect his research. I curious to know what made Rushil contact me? He said when he looked at the list of speakers, my name was the only one that didn’t follow MD, PhD et. al. titles. Ha, so apt considering I was feeling like an imposter.

After connecting with him I looked at a few more posters, introduced myself to some members of the planning committee. It was apparent to me that most people that evening knew each other, possibly from previous conferences or because they are active with SIO. I felt a bit odd to break into any group mid-conversation, so I engaged with poster presenters or service providers that evening. Note to self: Next time I’m at a conference, keep an eye out for an attendee that doesn’t have an entourage and make an effort to connect.

The next morning, our day started at 7 am, which might be an early start for some, but I had been up since 3:30 am (blasted jetlag) so if anything, I was starving. Breakfast was laid out in the gardens, with a beautiful display of fruits, oatmeal, a fresh toasty bagel station, tea, coffee and juices. That morning I planted myself at the patient advocate table since that made most sense. I met some wonderful women and handed out my newly minted business cards to them. That’s the day I met Jodi, a patient advocate and part of the planning committee. She was the one that had reached out to me. Not only had she seen my TEDx talk, she had even read both my books. I felt like we had known each other forever.

I then introduced myself to a woman who told me she was visiting from Nigeria and this was her first time in the US. She talked about her work in Integrative Oncology, she was studying the benefits of traditional African medicinal herbs in cancer care. There were parallels between her work and Rushil’s, I made sure to talk to Rushil about her that afternoon.

The few hours of interacting with this group was enough for me to realize that at the heart of it all, degrees and research papers aside, we thrived on human connection. Interacting with similar minded people, exchanging information, learning and listening, in my case- mostly doing the talking, energized me and left me filled with a renewed purpose.

The Pesky Imposter Syndrome

AnaMaria Lopez was the host of the Mind- Body Medicine panel discussion at SIO2022. The Society for Integrative Oncology decided I would go first. AnaMaria introduced me by sharing a quote from my TEDx talk and first book. Context… I was a mother to an infant baby girl and 3 year old toddler boy. We heard this phrase thrown about a lot, ‘it takes a village…’ when referring to raising a child. I couldn’t agree more. From well-baby checks, colds and fevers, teething, sleepless nights I depended a lot on my village. But that phrase took new meaning for me on 2 March 2018 when I heard the words that forever changed my life, “All 3 sites tested positive for cancer”. My first thought was, how can this be happening? I’m a mother. My second thought, how are we going to endure treatment with two kids under the age of 4? Within minutes, the shock of the diagnosis turned into an action plan. I knew right away that I’m going to need all the help I can get. And that’s when I muttered to myself, “If it takes a village to raise a baby, it’s going to take a bloody army to fight cancer.” It was apt that AnaMaria chose that quote as she introduced me.

My other panelists were a radiation oncologist and professor Kavita Mishra and Linda Larkey a PhD and a professor. Before I go on, can we please marvel at the number of degrees and other qualifications the SIO International Conference attendees held? There wasn’t a name I saw that didn’t follow an alphabet soup of acronyms. I might have been the only attendee with a lone bachelor’s degree. I was bumming hard on the imposter syndrome. It doesn’t help that I’m Indian and we as a people are in a business of collecting degrees. Adding to it, these medoncs, radoncs, surgeons, professors, service providers, NYT best-selling authors, all work in the field of cancer. Whereas I am an engineer who works on… wait for it… engines! Regardless I was here and I was determined to seize this opportunity to deliver my message. Time to squash that imposter syndrome.

L to R: Dr. Rao, Dr. Lopez, Yours Truly, Dr. Mishra, Prof Linda Larkey

Step 1- Establish yourself a credible speaker. I started with telling the group that I grew up in India where there is a belief, superstition of sorts that if you say something ominous out loud, it’ll come true. I saw this play out, but it really hit home when I heard an oncologist say, “CA-breast” to confirm a breast cancer diagnosis. When a medical professional sidesteps the word cancer they reaffirm this superstition. So, it came as no surprise that when I was diagnosed the advice given to me was to be quiet about my disease. I let the audience into my personality a bit when I stated the problem with that – when I’ve been asked to not talk about something because it is a taboo what do I do? I talk about it! I told my friends and family, colleagues and neighbors. I even walked at the Relay for Life Event, while going through chemotherapy. So much for hiding the diagnosis.

I then showed a picture of my husband and I at the Relay event, I was bald, pale, bloated, moon-faced and hunchbacked. I had my one-year-old daughter on my hip. And my husband was holding our son. It is a visceral image.

Photo Credit: Dr. Linda Carlston

I let the world see me at my most vulnerable as I endured 7 cycles of AC-T dose dense chemo, a double mastectomy and removal of 7 lymph nodes from my left side, topped with, 28 sessions of radiation using the easy to master breath-hold technique (dripping in sarcasm). This was my chance to take a dig at the radoncs, and I dig I did, as I said, “Radoncs in the this room, I need to have a word with you.” There was a chuckle from the audience. Humor can be an effective relief valve. And dark humor particularly is my coping mechanism.

I then went on to enumerate the other things I’ve done. A year following the end of my treatment, I was the speaker at the local Relay event. But talking wasn’t enough, so I wrote a memoir about my breast cancer experience. I showed a picture of the book cover and informed them that Unafraid: A Survivor’s Quest for Human Connection was recognized by Forbes Magazine a must-read in 2020. But writing wasn’t enough so I did a TEDx talk on the cultural bias and stigma associated with cancer. That still wasn’t enough, so I went on to publish a second book on survivorship titled, Unabashed: Self-Advocacy and the Quest to Foster Empathy. Keeping momentum going I listed in one breath – I’ve done fireside chats, been a panelist, keynote speaker, been on the front cover of a magazine and in the local newspaper twice, to name a few and I’m not done yet. I paused for the drama and said, “I bet they regret telling me to be quiet.” That statement got me a hearty applause.

I felt I did enough to establish myself as someone with no degreed qualification for an oncology talk, but a lived experience worthy of learning from. My goal was clear, I wanted to help this group provide a culturally cognizant and more holistic approach to cancer care.

Having captured their attention I went on present my three asks: Tune into cultural sensitivity, create a safe space free of toxic positivity, give their patient a heads up that survivorship is a struggle in its own right.

I want to verbose post with complimenting Kavita and Linda for doing a bang up job of bringing elements of my talk into their work in the field. It would’ve been hard for me to follow them, they were really good at improv.

I gave you the middle, you now have you the start, I’ll follow it with the end.

Panelist at SIO2022

Last week (21 Oct ’22) I traveled to Phoenix AZ to speak at the 19th International Conference held by the Society for Integrative Oncology.  I was a panelist, along with two accomplished women – Kavita Mishra, a radonc and professor at UCSF and Linda Larkey a PhD and also a professor at ASU. The host for our session was AnaMaria Lopez MPH, MD, an oncologist at Jefferson Health. The topic was Mind-Body Medicine.

I titled my talk ‘The C-Word’ and I had a three asks from the cancer care providers in the audience and online.

My first ask: Tune into Cultural Sensitivity

Depending on where the patient is from; their ethnicity and familial background can make it difficult or downright shameful to talk about the disease. I shared some examples of this stigma – Survey showed that 53% of Indians are likely to agree that people with cancer brought it on themselves. In Mexico, cancer may be seen as a punish­ment. In parts of South Africa cervical cancer is highly stigmatized because the cervix is “part of the body you don’t speak about.” The more knowledgeable cancer caregivers are about cultural biases the better they will be at understanding the patient. This can shed light on whether the patient is being well supported by the community or if they are suffering in silence. The care team can use this information to tailor support and channel resources accordingly.

My next ask from the caregivers was to create a safe space free of toxic positivity. I sighed over the numerous times people reminded to “stay positive” during treatment. If positive thinking could wish away my chemo I would be OD-ing on optimism. I told SIO attendees how validated I felt when my oncologist let me lament over my hair loss unlike others around me who found it imperative to remind me that “it’ll grow back”.

The other example of toxic positivity I shared was a story about my friend in Peoria IL. This mother to 6 yo twin boys was recently diagnosed. She had a list of questions for her oncologist, rightfully so. Not even half way through her questions the oncologist told her to “not worry so much”. There was an audible gasp from the audience. I went on to say that fear, anger, anxiety, hope, relief, sorrow, hopeless, joy and everything in between; are the gamut of emotions us survivors are allowed to have. And it is no one’s place to placate our journey. The audience applauded.

I then went from past tense to present as I told the SIO attendees that the chase for the silver lining doesn’t with treatment. I talked about getting approached by people who want to hear about the lessons cancer has taught me and how beautiful my life is now that I’m on the other side. The problem is my life was rainbows, before cancer. I lived a life untainted, felt unbridled joy, danced unapologetically. Cancer broke a part of me… mid-sentence I choked up. I was not anticipating this wave of emotion. What is this lump in my throat? I’m on stage! Keep it together! In a quivering voice I stated that I will never be thankful for cancer. I shared what I was grateful for; the poisonous chemo and the gentle healing beam of radiation that has rendered me disease-free. And I was grateful for the glue that held it all together, an oncology team that did not mandate toxic positivity.

There was applause again, I think? It’s a blur because I was still recovering from the loss of control.

Not all was lost though, I managed to end strong with my last ask. I suggested that as caregivers, this group should give their patient a heads up that survivorship is a struggle in it’s own right. After months of grueling treatment when I was on my last day of radiation it hit me; I wasn’t ready to be cut off from the Cancer Center. How do I go from fighting for my life to sitting in a conference room discussing engine controls? You see for months a group of highly specialized medical professionals watched me like a hawk, and now what? I’m free to fly? I wish I had known the complex and contradictory emotions a patient can have at the end of treatment.

I concluded with a few lighthearted words admitting that I’m proficient at dishing out unsolicited yet deeply personal advice. I ended with a “you’ve been a great audience” as I joined my hands in prayer as a non-verbal but genuine thank you. I am certain I made an impact however small it may be. I reached people, opened their eyes to cultural bias associated with cancer or echoed their sentiments on toxic positivity. I am so humbled I got this opportunity.

This series of posts are like Star Wars Episodes, we won’t be following linear logic. I will next write about how I was introduced, what I shared about my journey and the expert panelists. And follow that up with the overall conference experience. Stay tuned!

London Town

Royal Opera House

London is one of my favorite cities to visit, I never tire off it. It is easy to fall in love as a tourist and fall in love I did, all over again. With London the agenda was simple, experience the pulse of the city given we had limited time. Museums were not on the list, as we were going to be graced with beautiful weather.

We rented a modest Airbnb in West Kensington. Not to be mistaken for the more posh South Kensington where my husband was born. Hindsight, I would stay in Notting Hill or Knightsbridge right in zone 1 of the city. We took the tube from Kensington station to Westminster, of course the kids loved the tube experience. I infused them with a bit of history – the London tube is the oldest train system in the world dating back to 1863. It is a marvel that the transportation department has been able to maintain, update, upgrade, bring-to-code an underground system that is 150 some years old.

Westminster Abbey

As we peeled out of Westminster station and came upon Big Ben, Vihaan’s eyes got so big! Squealing he said, “Big Ben is HUGE!” It surpassed his expectation. It really is quite magnificent. Aarini reveled in brother’s excitement. We walked around the houses of parliament, as it would be, saw some peaceful protestors opposing the Tory Government. We then made our way to Westminster Abbey. The line to get in was fairly long and we had tickets for the London Eye. So did an about turn to head towards the London Eye; not before telling the children that the oldest part of the abbey is over a 1,000 years old and snapping some photos.

The Palace of Westminster and Big Ben

Ok if Big Ben was mesmerizing, the London eye had Vihaan gob smacked. “Amma that’s the biggest Ferris wheel I’ve ever seen.” Why yes Vihaan, did you know this is the tallest *cough cantilevered cough* Ferris Wheel in Europe? I didn’t have the energy to explain what cantilevered meant. We crossed the Thames on the oldest road bridge in town, the Westminster Bridge. Looking back to take in the beautiful views of the houses of parliament and Big Ben.

London Skyline from the London Eye

The London Eye experience was pretty spectacular as the skies cleared and we had great visibility of the city’s skyline. I had forgotten how many people they can get into those pods.

Jubilee Decorations as the Union Jack bunting is seen everywhere

After the Ferris Wheel we made our way to Covent Garden to shop, eat ice cream, watch a street performance, listen to a opera singer on a street corner, see a magician and more. While there are many things we could be actively doing, I liked that we could spend chunks of the day just soaking in the sights and sounds of the city.

The iconic red phone booths, decorated for Pride Month

Next up we took the kids to the world’s biggest toy store, Hamleys! Established in 1760 this is also the world’s oldest toy store. Getting there was fun, as the streets around there were decorated both for Pride Month and the Queen’s Jubilee. The kids went crazy with the seven floors of exploring toys at Hamleys. We allowed them a toy each.

Gates of Buckingham Palace were open for Vihaan and Aarini

Our second day was spent getting to Buckingham Palace. Watching the palace guards was funny for the kids.  Vihaan got the palace guard march down to the tee, Aarini followed suite. We even caught a royal mail van making it’s way out of the palace, now that truly is Royal mail.

Nothing says royal mail more than a Royal Mail van leaving Buckingham Palace

We then walked towards the Victoria Memorial to hang out by the steps and get a better view of the Queen’s home. The flag was flying high, which meant the Queen was in the building! A fun fact we got to explain to the children.

This is not my first time seeing Buckingham or hanging out at the steps of the Victoria Memorial but it sure was the first time I noticed one of the marble figurine’s is a breastfeeding mother. I went around and studied all four sides. The one on the opposite side facing the Mall is Queen Victory, on either side are these winged creatures (read about this later- one represents Justice and the other Truth) and the sculpture on the backside facing Buckingham Palace directly is a breastfeeding mother! That is SO cool given the shame around breastfeeding in some parts of the world including the United States. Here is a 100+ year marble sculpture with no nursing cover saying “accept this”. (Purely my interpretation.)

Breastfeeding mother sculpture at Victoria Memorial facing Buckingham Palace

The kids wanted to do ride a double decker bus, on the top in front row. So we took the bus to Trafalgar Square. It seems Trafalgar Square was getting ready for some concert, there was a stage being constructed. It was about that time in the evening where the traffic got pretty crazy, busses were crammed, sidewalks got super busy. We walked around some and made our way back to our Airbnb for the last night.

Double Decker Bus

Our last supper in London was a simple take out. We had packing and sorting to do. Our flights were delayed for the next morning leaving me stuff to organize an alternate plan for our return. We were going to miss our connection, so needed to reroute and get a one way car rental. The following morning was a long day of uncertainty and Heathrow was chaotic mess. That night we finally walked through the front door at 11 pm, home sweet home. Jetlagged but so relieved to be home.

Would I do this all over again, with two kids in tow? You bet I would, in a heartbeat.

View of the Thames from the London Eye

The Cotswolds

Idyllic is the only way to describe the picture-perfect Cotswolds region of England. The rolling hills, stone fences, undulated landscape and winding roads makes this area a photographer’s paradise; yet photos seldom do justice. Nonetheless I will share a few, to influence you (Hey! That rhymed).

Technically the Cotswolds spans across a few shires: Gloucestershire, Warwickshire, Worcestershire, Oxfordshire, Somerset – sadly not a shire, and Wiltshire.  Before I go on, can we do pronunciations of these counties please? Gloss-ta-sha, War-rick-sha, Wuss-ta-sha you get the jist. The unofficial capital of the Cotswolds is Cirencester, ironically pronounced literally as it is spelled. English is one of the least phonetic languages I speak. How did this empire colonize half the world and get us to adopt their tongue?

We were in Cirencester for a very special occasion, one of Nuwan’s first cousins was getting married. The wedding was at a barn, in the middle of nowhere England, which is still fairly populous when compared to the United States. Since I’m a numbers gal, I looked it up. The population density of the UK is 727 people per square mile vs the US sitting at a spacious 94 per square mile. Let’s just say we know how to do remote this side of the pond.

My husband has 52 first cousin. 52. First. So, while we may not be able to attend all first cousins’ wedding, and logistically some first cousins’ children are now marriage age, I was very pleased with myself that we could make it to this special occasion. This family of three sisters is very dear to my husband. While Nuwan was doing his undergrad at the University of Surrey he spent many a weekends and special occasions with this uncle and aunt, and their three girls. The bond was organic and effortless. More importantly I’ve had the pleasure of indulging in the aunt’s culinary feats. Umm they would be my closest aunty and uncle as well.

The wedding was beautiful and intimate. Everything was tastefully done and well thought out. I am grateful it was in Cirencester as opposed to London where the bride is from, because it gave us a chance to show the kids English village life. We stayed in the area for 4 days to explore the place.

Cirencester, UK

Built in the 12th century the Church of St. John Baptist graces town center and is a magnificent structure. The kids had their first fish and chips at the Malt and Anchor. This chip-shop, as they call it, has been voted the best fish and chips in England. Now Cirencester is no metropolis, we stuck out a bit in the predominantly white population. But the odds of seeing Sri Lankan Fish Curry on the menu at Malt & Anchor, and then randomly running into another brown person who is Nuwan’s first cousin – because we are all related? – was stupefying.

An understated store front for a famous chip shop: Malt & Anchor

About a 15-minute drive from Cirencester is the village of Bibury, the most photographed village in England. Of course, I wanted to check it out, so we spent an afternoon in Bibury. The golden limestone walls of the houses, thatched roofs, cobbled stone streets, river through town, pedestrian bridges… should be the site of the next rom-com. Bibury was a dream.

After showing the kids Leamington Spa, a bustling town in the West Midlands and this taste of the quiet village life, the kids told me their biggest highlights. The gaggle of geese at the Jephson Gardens in Leamington and momma duck with her 12 ducklings in Bibury. Go figure! They did pick up some England English, like saying cheers when I gave them cookies, knowing cheers can be used as a thank you. But what had me in splits was when Vihaan said this in a delibrate English accent, “Amma, Can I have a bag of crisps please?” This trip across the Atlantic was made worthy right there.

Next stop, London baby! But only after tea and biscuits from this food truck.

Tea and Biscuits Anyone?