A Mother, A Wish and A Miscommunication with the God!

Today, on Mother’s Day, I find myself reflecting on the remarkable strength embodied by the mothers in my life: be it my mother who is in her old age still helping my home to run and a great support for me as single parent in parenting Suryansh aka Avi (Kusum and my son), or Kusum’s mother who was such a strong support for Kusum in her fight with Cancer, and Kusum herself who despite her fight and struggle with cancer, disease and treatment side effects, even at the time she got partial paralysis, she always did everything for the great upbringing of her son. Their strength inspires me daily, reminding me of the boundless love and sacrifice inherent in motherhood.

When Kusum aka Vibha, found out she had stage 4 lung cancer that had spread to her brain, bones, ovaries, and adnexa, one of the first things we talked about with our doctor was how much time she might have left to live. Throughout her incredible seven-year battle with cancer, facing multiple setbacks, we always understood that stage 4 cancer couldn’t be cured, and that death can come anytime. So, Kusum and I would often talk about it, sometimes in a light-hearted way, and other times more seriously.

Kusum used to say she wanted to live at least until our Suryansh finished his class 10 board exams. For those reading who aren’t in India, in our country, class 10 exams are the first big national tests students take, along with millions of others. Class 10 is like the starting point for academic success and sets the foundation for the rest of the journey.

It seems there was a mis-communication and mix-up with God, in terms of figure 10. Instead of waiting until Suryansh finished his class 10 exams, which Kusum wanted, God misunderstood and took her away when Suryansh turns 10 years old.

That left me with another wish from Kusum still waiting to be fulfilled. Over the last five years or more, being a single father has been quite a challenge. Mothers are incredibleโ€”strong, skilled, and seem to have a natural knack for parenting. But we father, how much we try, we can never become as good as a mother. And when I sought help, it felt like all the support material found on internet was for single mothers only. They forget that single dads like me are out here too!
But, I’ve been fortunate to have amazing support from my family, friends and a son who’s just as amazing as his mother, which has made a huge difference.

After five years of when God took away Kusum, this month, Suryansh passed his 10th class exams with flying colors. He scored exceptionally well, way beyond what I could have ever imagined. But you know what? I’m not just happy because of his high marks. Grades have never been the most important thing to me. What matters most is his learning, his hard work ethic, his honesty, and the development of his skills. What really makes me happy is knowing that I was able to fulfill one more wish of Kusum’s.

Now, the question arises: “Should I let you go, Kusum, now that Suryansh has completed his 10th class?” And the answer is a resounding “No, I’m sorry, I can’t!” Because, truth be told, I can’t do this alone. I believe your blessings, as our guardian angel, have been guiding both Suryansh and me to this point. And as we continue on this journey, we need you even more, our angel by our side.

And hey, Happy Mother’s Day to you, my love, and to all the incredible mothers out there. And you know what? I think Happy Mother’s Day to me too!

Vivek

Advocating for inclusive Policies to benefit Patients

As some of you may know that in my volunteer work, after ๐†๐จ๐ฏ๐ž๐ซ๐ง๐ฆ๐ž๐ง๐ญ ๐จ๐Ÿ ๐ˆ๐ง๐๐ข๐š, I was also appointed as advisor to ๐†๐จ๐ฏ๐ž๐ซ๐ง๐ฆ๐ž๐ง๐ญ ๐จ๐Ÿ ๐๐ฎ๐ง๐ฃ๐š๐› via member of esteemed State Expert Oncology Committee.

This week the project has started as we met in Chandigarh (India). It is a privilege to work along with nationโ€™s top oncologists, policy makers, economists and senior officials of the Punjab government, to collaborate on developing and formulating a ๐๐จ๐ฅ๐ข๐œ๐ฒ for establishing Standard Treatment Protocols for common ๐œ๐š๐ง๐œ๐ž๐ซ๐ฌ in Punjab.

I was part of ๐ฅ๐ฎ๐ง๐  ๐œ๐š๐ง๐œ๐ž๐ซ panel. We had very engaging discussions and I have advocated & secure principal consent that lung cancer (including ๐€๐‹๐Š & ๐„๐†๐…๐‘ lung cancer which constitutes approx 40% of lung cancer in India) be part of Punjab government schemes including affordable quality ๐›๐ข๐จ๐ฆ๐š๐ซ๐ค๐ž๐ซ ๐ญ๐ž๐ฌ๐ญ๐ข๐ง๐  and treatment plan, ๐š๐œ๐œ๐ž๐ฌ๐ฌ & ๐œ๐จ๐ฌ๐ญ, and to create government awareness program on lung cancer & stigma associated with it.

The work will continue to get this implemented on the ground. I’m hopeful that these efforts will yield significant benefits for cancer patients in Punjab and India.

#PatientAdvocacy #PublicHealth #CancerCare

The Diwali, The Balloon, and The Lesson…

It was Diwali morning in 2018. Ideally, by that time, I should have completed the typical Diwali festive decorations of our house, which included flowers and lighting of the house, but I did not…

It was due to the fact that Kusum’s health was deteriorating quickly due to her cancer’s aggressive progression. And when she was not well, then what was the meaning of any decoration? I was really sad, in fear of what was coming…..I was sinking..

But then Kusum aka Vibha came to me and requested that I decorate the house as we do every year. As shared, I was not mentally ready, and I opposed her with the logic and her health and told her I just wanted to be with her; I would not go to the market; we would talk; we would watch movies; and I tried to convenience her with my logic for decoration and stuff….Though it was of no use. ย She literally forced me. I wanted to put all my efforts and time into her care, but she had her own thought process, which I was not able to understand at the time.

Anyway, I went out to shop for decoration items with a half heart, and in the next few hours, for my Kusum, I made decorations with Rangoli, electric Lights, Candles, Flowers, and Diyas and put a heart-shaped balloon (which was not a typical balloon but made of plastic or polyethylene-type material) in front of the main gate of our house. It was written ‘Subh Deepawali’ in Hindi on that balloon, which means in English ‘Happy Diwali’….Our house was sparkling like an Indian bride!ย 

In the evening, we sat together for hours. She was still in pain, but she was absorbing the positive vibes from the festive environment. She kept looking at our beautiful house, and our 9-year-old son was not feeling left out of festive events. My parents came to ensure we were not alone, and we were surrounded by love. The house was at that time the perfect ‘home’, irrespective of unfortunate cancer pushing hard against it.

That day I learned that to change the bad circumstances may not be in our hands,  but it is important to celebrate life, celebrate what we have, and that too together, for us and for our loved ones……… I understood what Kusum was trying to convey while pushing me for decoration and celebration. It was a really beautiful Diwali.

That was Kusum’s last Diwali with us….It has been 5 years since, but that balloon is still there. Today, I was standing and looking at that balloon, and it felt for a moment that balloon and I were both smiling together, thinking about that fine Diwali ๐Ÿ™‚

Dear Readers: Wishing you and your loved ones a very ‘Happy Diwali’…Do love, spread hope, and live life in every moment of it ๐Ÿ™‚

One more done from her bucket list…

Background:
In 2018, Kusum aka Vibha got partial paralysis due to a significant increase in the number and size of brain cancer tumours, also called mets being metastasized from the lungs. In Jan 2017, she got enrolled in a research medicine / clinical trial after a long fight for access to that research medicine in Indiaโ€ฆ.And then wonders happened, in September 2017, she was running the Delhi Pinkathon Marathon (a run only for females) to raise awareness about cancer, hope, cancer research, and clinical trials.

The wonder girl Kusum’s efforts did make an impact in raising awareness at the event as well as later being covered by the media.

Incomplete wish item:
One fine evening later that week, she suggested that we let her and me together run to continue to raise awareness and for our love :-). We chose the Delhi half marathon, a globally recognised choice of running events for every runner in Indiaโ€ฆBut by that time, enrollment for the 2017 Delhi run was over.
By 2018, Kusum’s health had deteriorated, and she was not in a position to run. And in Feb 2019, cancer took her awayโ€ฆ.so this item for the run remained in her incomplete wish list bucket.

Finally done:
Since then, I have been trying to complete her incomplete wish list items one by one while managing the life after her. And this month, on October 15th, I am finally able to run and complete the Delhi half marathon with my personal best time while raising awareness about cancer, as Kusum wished for ๐Ÿ™‚

This is for you Kusum aka Vibha…This is only for you….
Love forever
Vivek

A busy, but productive weekend

Last weekend was very busy for me in my volunteer work capacity, but was indeed productive…I was in back-to-back some amazing events, including:

– Speaker and Panelist at the โ€œ๐ˆ๐ง๐ญ๐ž๐ซ๐ง๐š๐ญ๐ข๐จ๐ง๐š๐ฅ ๐‹๐ฎ๐ง๐  ๐‚๐š๐ง๐œ๐ž๐ซ ๐’๐ฎ๐ซ๐ฏ๐ข๐ฏ๐จ๐ซ๐ฌ๐ก๐ข๐ฉ ๐‚๐จ๐ง๐Ÿ๐ž๐ซ๐ž๐ง๐œ๐žโ€ by the LUNGevity Foundation, US

– Speaker and Panelist at the โ€œ๐ˆ๐ง๐๐ข๐š๐ง ๐‚๐š๐ง๐œ๐ž๐ซ ๐’๐จ๐œ๐ข๐ž๐ญ๐ฒ ๐€๐ง๐ง๐ฎ๐š๐ฅ ๐’๐ž๐ฆ๐ข๐ง๐š๐ซโ€ in Delhi

– Speaker and Chief Guest at โ€œ๐€๐ฆ๐ข๐ญ๐ฒ ๐”๐ง๐ข๐ฏ๐ž๐ซ๐ฌ๐ข๐ญ๐ฒ, ๐ˆ๐ง๐ฌ๐ญ๐ข๐ญ๐ฎ๐ญ๐ž ๐จ๐Ÿ ๐๐ก๐š๐ซ๐ฆ๐š๐œ๐ฒโ€ on โ€œWorld Pharmacist Day 2023โ€

At the International Lung Cancer Survivorship Conference, it was great to be on the panel with esteemed oncologists from the ๐”๐’, ๐Š๐จ๐ซ๐ž๐š, ๐€๐ฎ๐ฌ๐ญ๐ซ๐š๐ฅ๐ข๐š. Kudos to the moderator Dr Amy Moore for such an engaging session, and Thanks a million to LUNGevity and its team especially my dearest Dr Upal Basu Roy bhai for the support and great work for lung cancer community. I raised and discussed the issue of equity, access and affordability in Lung Cancer care in India๐Ÿ‡ฎ๐Ÿ‡ณ and Asia.
Healthcare is a basic right for everyone and not a privilege for the few. Until we ensure equal access & affordability in Lung Cancer globally, as my Kusum used to say, “Losing is Not an Option“! The event was joined by hundreds of participants from more than ๐Ÿ“๐ŸŽ ๐œ๐จ๐ฎ๐ง๐ญ๐ซ๐ข๐ž๐ฌ to learn how to live well with lung cancer.

At the Indian Cancer Society Annual Seminar, I was a panelist and speaker along with Indiaโ€™s leading oncologists (Padam Shri awardee, the fourth-highest civilian award of the Republic of India), bureaucrats and NGO leaders. I spoke on the unfortunate situation of a lack of Clinical Trials in Cancer care in India. And from Cancer patients and caregivers’ perspective on why clinical trials are critical for access to the latest treatment, a better outcome, and long-term survival in cancer care.

At Amity Institute of Pharmacy on World Pharmacist Day, I was invited as to address a large gathering of pharmaceutical sciences students on โ€œ๐–๐จ๐ซ๐ฅ๐ ๐๐ก๐š๐ซ๐ฆ๐š๐œ๐ข๐ฌ๐ญ ๐ƒ๐š๐ฒโ€ to encourage and guide a new generation of talent for Pharma industry, Regulatory Affairs and Medical Writing.

For Kusum Malik Tomar, For Humanity
Vivek

Those few seconds last night!!

It has been more than 4 years since Kusum aka Vibha passed away. However, I have kept her mobile number active; all her WhatsApp chats, emails, mobile gamesโ€”everything is still here as it was with her.

Last night, I picked up Kusum’s mobile and was reading those old golden chats between me and her in her WhatsApp itself. When I was done, I kept her mobile aside and picked up my mobile…….And then I saw Kusum appearing as ‘online’ at my WhatsApp ….For next few seconds, I forgot everything; I forgot that she is no longer between us; I forgot that I was the one who was using her WhatsApp a second before….I felt like she went somewhere without contact and came back….And surely for a second, it felt like she was alive again…….My eyes started to search…….I was totally confused…..It felt like that my heart skipped a few beats and then started pumping like anything……That feeling I realized in those few seconds is impossible to describe and categorized,       but those few seconds…uffffffffff!!

And this is it, this is today’s blog….nothing much, but……

PS: Attention to all who have Kusum aka Vibha’s cell number: I would like to share that Suryansh (Kusum and my son), this amazing boy, has decided that he is taking Kusum’s mobile number and would use it as his permanent personal number. I know a few of you continued to send your personal messages to Kusum on her mobile number. I have never read them, as I know how personal, emotional, and important those messages are for you. However, in the future, you will not be able to send such messages…I am sorry for that! But at the same time, I am sure you would be happy seeing that Kusum’s number will remain active and will be used by none other than her son, and that you can dial that number again.

In memory and in love,
Vivek

#SpreadLoveSpreadHope #RiseToSurviveCancer #KusumVsCancer #Grief

State Oncology Expert Committee, Punjab, India

I am pleased to share that I have recently been appointed to the Punjab State Oncology Expert Committee by the Government of State of Punjab, India๐Ÿฅ.

What makes this journey unique is that all committee members are esteemed clinicians or bureaucrats, and I am the sole patient advocate, representative for patients’ voices and experiences. It’s a testament to the importance of including the human aspect in healthcare decisions. ๐Ÿ—ฃ๏ธ๐Ÿ’ช

Our goal is clear: to establish, review, and adopt policies that will shape Standard Treatment Guidelines for common cancers, including Breast, Lung, Cervical, Oral & Lip, and Hepato-cellular Carcinoma. The aim is to create policies and treatment protocols towards comprehensive, high-quality oncology services and to expand access to quality Cancer care in the state of Punjab with more than 110 million population, and with the ultimate goal of improving the outcomes and quality of life of cancer patients.๐Ÿ’š

I’m deeply honored to be the bridge between patients and policy, and I look forward to contributing to better healthcare for all. ๐Ÿ™

#PatientAdvocate #Healthcare #CancerCare #PunjabHealth #AdvisoryBoard #RiseToSurviveCancer

Fulfilling her wishes – PhD and…

Kusum as student: As I heard from the friends, classmates, and parents of my wife, my love “Kusum aka Vibha,”ย  she was a bright student. Not a high scorer or topper, but a hardworking, studious, concept-based learning type student. Her parents were from a lower middle-class family from Rohtak, Haryana, where no one in her extended family was well qualified. A state where the girl-boy ratio was very poor and girl education was not encouraged. But Kusum’s amazing parents supported her education. But it was Kusum’s passion and dream to study more and more and make a successful career that led the way.

Kusum, education & cost: She was doing BSc (bachelor’s degree in Science) and then left it to pursue B.Pharm. (bachelor’s degree in Pharmacy), thinking that it may be a way to fulfil her dream. After B.Pharm., there was no money with family to support her higher studies, but she did again and qualified GATE, a tough competitive exam that gave her admission in one of India’s top institutes to get a postgraduate degree in Medical Chemistry (M.Pharm in Medical Chemistry), and that too with a 100% scholarship, covering every cost of her studies.

Kusum and me: Being lucky, I met her at Zydus Cadila, a leading pharma company in India, where she was doing her M.Pharm. dissertation project in Analytical R&D and I had joined the Drug Regulatory Affairs department as a regulatory scientist. I fell in love with her even before meeting her (that’s another story for another day to tell), and here we were getting married after a few months.

After completion of her M.Pharm. and post-marriage, her first job was as a clinical research scientistโ€ฆ..It is interesting that after her diagnosis with cancer, she had to participate in 7 clinical trials/ research medicine because all the approved standard treatments in India failed her. So, see how the table turns from being a clinical research scientist to becoming a patient searching for and participating in clinical trials.

She, Cancer, PhD & MBA:
Her passion for learning and study continued after our marriage, and she was committed to studying further. She secured admission to a PhD programme in pharmaceutical sciences for analytical research and development. But here comes the diagnosis for her stage 4 lung cancer (never smoker) metastatic to the brain, bones, ovaries, adnexa, et al. She was never able to be in a position to give the required energy and time for research, โ€ฆ..and her dream of a PhD remains a dreamโ€ฆ

As she was not able to travel, work in labs, do research, etc., hence leaving her PhD, she took admission for a distance MBA. Despite her fight with Cancer, she passed three semesters of MBA, too, with distinctionโ€ฆโ€ฆ.But God did not give her the required time to appear in her final semester examโ€ฆโ€ฆ

Me & her wishes: On the other hand, I neither had interest in studying further nor had time with a full-time professional job that helped to earn bread for my family, where I never compromise in time and commitment, my volunteer work of cancer patient advocacy, and indeed a single dad jobโ€ฆโ€ฆ..But I don’t know why I was feeling uneasy with the thought that all those academic wishes of Kusum remain unfulfilled. Though they were such wishes that ideally became null and void with her leaving this world,ย  ย  but I was not getting peace. Hence, one day I decided that in memory and for my love, my Vibha, I would fulfil all those wishes. I have decided to give my nights and any possible available time to itโ€ฆโ€ฆโ€ฆSo, I got enrolled in PhD,โ€ฆ.and here I am after a few years, Vivek has become Dr. Vivekโ€ฆ.

If she is there, anywhere, I hope she is getting some peace like me to see those of her wishes fulfilled through me.

Knowing Kusum, you would assume that in the list that she had planned before and during Cancer, it could not only be PhD :-). You already know about MBA, and there are many othersโ€ฆ..So watch this space for updates on my journey living and fulfilling my Kusum wish list ๐Ÿ™‚

For love, for hope, for humanity,
Vivek

Study which throws light on Caregiversโ€™ issues in India

๐ŸŒŸ Thrilled to share this important update from my volunteer work! ๐ŸŒŸ

I am delighted to announce that as a patient advocate, I had the privilege of co-leading an extraordinary study alongside passionate oncologists from India and the US. Our research focuses on shedding light on the critical issues faced by caregivers and families of cancer patients in India, taking a closer look at the pervasive challenge of Financial Toxicity.

I am immensely proud to share that our study has not only been published in a prestigious Springer Nature 2023 journal but has also garnered tremendous visibility. “The Times of India“, the largest selling English-language daily in the world, recently covered our research, further amplifying its impact and reach.

This study has expanded the conversation on Financial Toxicity beyond the borders of the United States. In examining the burdens faced by families and caregivers in India, we have delved into the intricate psychosocial dynamics that surround these challenges. Our findings underscore the urgent need to address these issues and offer actionable steps forward.

Our research dives deep into the evidence, potential interventions, and future directions to tackle the far-reaching consequences of financial toxicity in the context of cancer diagnoses. By illuminating the ways in which it affects access to care, the mental and emotional well-being of caregivers, and the overall family dynamics, we aim to inspire change and improve the lives of cancer patients and their support systems.

I am humbled by the significance of this work and its potential to bring attention to the unmet needs and challenges faced by cancer caregivers and families in India. Together, we are paving the way for transformative solutions. ๐Ÿคž

If you’re interested in learning more about our study and recommendations, which encapsulate global perspectives and experiences of families and caregivers, I encourage you to read the published article in the esteemed Springer journal.

I would like to express my heartfelt gratitude to everyone who has supported and contributed to this endeavor. Let’s continue our mission to make a positive impact in the lives of those affected by cancer and work towards a brighter future.

#CancerResearch #Caregivers #FamilySupport #PatientAdvocacy #TransformativeResearch #India #FinacialToxicity

For love, hope and humanity,

Vivek

World Environment Day 2023

I am back on the road with myย ‘Run for Cause‘ย initiativeโ€ฆ.Today 5th June is “World Environment Day 2023“, and I ran a half-marathon to raise awareness about environmental and health Impacts of air pollution (air pollution is now one of the leading causes of lung cancer globally (a significant number of new lung cancer cases are non-smokers and due to air pollution).

Today, on World Environment Day, I urge you:
– to help in creating awareness that air pollution is causing a flood of lung cancer, especially in young and women,
– to ensure that you and I do not become a cause of air pollution where it can be avoided,
– to plant at least one tree this year to ensure that it gives shade and oxygen to us and our generations to come.

#WorldEnvironmentDay2023
#PlantTheTrees
#SaveTheEnvironment
#LungCancerAwareness
#TheWhiteRibbonProjectย 
#RiseToSurviveCancerย 
#KusumVsCancer