Itโs been six years today since cancer took you away from me. I wrote this blog, “Hope and Regret โ The Final 10 Hours of Kusum in This World,” just three months after you left. And now, six years later, nothing has changed what has written in this blog. I still feel you around me just as much as I did then, yet I still yearn to hear your voice, to hug you, to laugh with you.
And those regrets… they havenโt faded. They still weigh on me, torment me. I keep thinkingโI should have done more, I should have said something different, I shouldn’t have let you go. Though, deep down, I donโt even know what else I could have done.
But one thing I have ensuredโyour legacy lives on. Your love, your hope, your courage, and your unwavering positivity continue to touch lives. For our families, for millions of cancer patients and their loved ones, I have tried to be a thread of hopeand keep it strong.
And you, my loveโyou are still making a difference. Through your work in transforming healthcare and cancer research in India, through the lives you touched, the patients you helped, the courage you showedโyou continue to inspire, not just in India but across the world.
I miss you with every breath I take… until we meet againโฃ๏ธ.
I had the opportunity of being a speaker at the Lung Health & Oncology National Conference and joining an esteemed panel to discuss improving lung cancer care in India. The session was both powerful and insightful, focusing on the growing burden of lung cancer in the country.
We delved into pressing challenges such as air pollution & lung cancer, stigma associated with lung cancer, lack of awareness, early diagnosis, to make cancer a notifiable disease, holistic approach to tackle lung cancer (including mental health, palliative care).
We also explored solutions to improve access and affordability to the latest treatments for Indian cancer patients.
I am deeply humbled to be recognized as the โ๐๐๐ญ๐ข๐๐ง๐ญ-๐๐๐ง๐ญ๐ซ๐ข๐ ๐๐ฎ๐๐ฅ๐ข๐ ๐๐๐๐ฅ๐ญ๐ก ๐๐๐ฏ๐จ๐๐๐ญ๐ ๐จ๐ ๐ญ๐ก๐ ๐๐๐๐ซโ for year 2024 at the ๐๐๐ก๐๐๐๐ก ๐น๐๐๐ ๐ก ๐๐ข๐๐๐๐ก ๐๐๐ ๐ด๐ค๐๐๐๐ ๐๐๐๐๐๐๐๐ฆ in Mumbai, in the presence of hundreds of leading policymakers, industry leaders, patient advocates, clinicians, scientists, and society dignitaries.
While the true reward lies in seeing the positive impact on patientsโ lives, this honor is especially meaningful as it spans all disease areasโnot just cancerโreflecting the importance of championing public health and placing patients at the heart of care.
This award is not just mine; itโs a testament to the collective efforts of countless #PatientAdvocates who work tirelessly and selflessly for this noble causeโฆand indeed this award is for and in memory of my wife Kusum Malik Tomar โฅ๏ธ
At the core of public health is the belief that โ๐๐ฏ๐๐ซ๐ฒ ๐ฏ๐จ๐ข๐๐ ๐ฆ๐๐ญ๐ญ๐๐ซ๐ฌ.โ Personally, I believe that โ๐๐ฏ๐๐ซ๐ฒ ๐ฅ๐ข๐๐ ๐ฆ๐๐ญ๐ญ๐๐ซ๐ฌ.โ These beliefs inspires me to continue advocating for solutions that truly prioritize the needs of patients.
Together, letโs strive to build a healthier, more equitable future.
Late post…..I got the incredibly opportunity to have represented the voice of patients at the National Cancer Grid annual meeting in partnership with the Government of India, WHO, ASCO, and other global organizations. I had the privilege of sitting on a panel with some truly remarkable leaders, including: – Prof. K VijayRaghavan โ Principal Scientific Advisor to PM of India – Dr. Ravi Kannan โ Padma Shri and Ramon Magsaysay Awardee – Mrs Usha Thorat โ Dy Governor RBI and Hon. Secretary ICS – Prof. Om Narasimhan โ London School of Economics – Dr. Anant Bhan โ Ethics Mentor and Mental Health Researcher – Prof. Nachiket Mor โ Scientist, Economist, ISB, Lancet Commission – Dr. Yogesh Kalkonde โ Public Health Practitioner With invaluable inputs and support from Dr. CS Pramesh, Director, Tata Memorial Hospital and Dr Soumya Swaminathan, WHO chief Scientist.
What makes this moment even more special is that Iโm now part of the founding team of the National Cancer Grid for Mental Health in Cancer. Our mission is to integrate mental health care within comprehensive cancer treatment programs and make this a national standard across India.
The event brought together over 300 esteemed leaders in oncology, public health, and research from 14 countries and national & global organizations including National Health Authority, eminent professors from IIT, WHO, ASCO, focused on strengthening cancer control across India and ASEAN.
This powerful collaboration reaffirmed a vital message: when science, ethics, economics, and patient values unite, we can build a healthcare system can truly be proud of. Hereโs to making a difference, step by step.
And indeed, it was lovely to meet with so many friends of patient care as well as medical community
Recently, I had the honor of representing the voice of lung cancer patients as the first Indian Patient Advocate to lead a workshop on Patient Advocacy for oncologists, researchers, and emerging patient advocates from across Asia at the Asia Lung Cancer Conference (ACLC) in Hong Kong.
The 2024 Asia Conference on Lung Cancer (ACLC 2024) took place from October 17 to 19, 2024, organized by the International Association for the Study of Lung Cancer (IASLC). This gathering spotlighted the latest advancements in lung cancer research, treatment methodologies, and clinical practices, serving as a beacon of hope for progress in the field.
This platform provided an invaluable opportunity to become a changemaker to foster a transformative shift in patient advocacy for lung cancer across the Asia-Pacific region. It allowed me to bring together patient advocates from various countries, guiding and empowering them with the knowledge, experience, and tools they need to become more effective voices for change.
It was truly inspiring to connect and collaborate with such an incredible group of fellow patient advocacy leaders and dear friends in this groundbreaking initiative, all united by the goal of improving healthcare for cancer patients in Asia.
Special thanks to IASLC team, Janet Freeman (ROS1Ders), Lillian Leigh (Chair of the workshop), and the remarkable Dr. Upal Basu Roy (LUNGevity) for their unwavering support and for making this opportunity possible.
Legends never truly leave usโthey continue to inspire and uplift us every day. On Sunday, September 15, 2024, the ALK Positive India community, a support and advocacy group for ALK+ lung cancer patients in India, paid tribute to their co-founder, Kusum Malik Tomar, on her #Cancerversary. This special day marked the anniversary of her diagnosis, a celebration of life that she observed each year with deep gratitude and resilience.
Kusum’s unwavering strength and spirit taught us how to live fully, cherishing every moment. She was not only stronger than cancer, but she also showed us how to embrace life with grace and courage. โค๏ธ
I was honored to be invited as a guest speaker by one of the worldโs leading pharmaceutical companies, โBoehringer Ingelheimโ, at their India head office in Mumbai for their esteemed annual event, “Value Through Innovation.”
I was thrilled to see such an outstanding response and engagement from the audience with my talk. The positive feedback confirmed that Kusum and my message, emphasizing that “Research Matters” and “Research Saves Lives,” resonated deeply. And that we (industry, patient advocates, clinicians, policy makers) together must ensure the availability and access to research, innovative products, and clinical trials for everyone in need including to every patients living in LMICs like India.
The warm welcome, attentive listening, and genuine care I received touched me profoundly. It was also heartwarming to reconnect with my dear friend and a change agent of patient advocacy in India, Prabhat Kumar Sinha ji.
While I have received many awards and recognitions in my patient advocacy role, the recognition from Boehringer Ingelheim was especially meaningful. They honored me with ‘Garden of 100 trees‘ being planted at ‘Simplipal National Park‘ in Odisha, which can be tracked throughout their lifecycle. This gesture is truly beautiful for life long and helped me to contribute better to the environment.
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 incredibleโstrong, 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!
As some of you may know that in my volunteer work, after ๐๐จ๐ฏ๐๐ซ๐ง๐ฆ๐๐ง๐ญ ๐จ๐ ๐๐ง๐๐ข๐, I was also appointed as advisor to ๐๐จ๐ฏ๐๐ซ๐ง๐ฆ๐๐ง๐ญ ๐จ๐ ๐๐ฎ๐ง๐ฃ๐๐ 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 nationโs top oncologists, policy makers, economists and senior officials of the Punjab government, to collaborate on developing and formulating a ๐๐จ๐ฅ๐ข๐๐ฒ for establishing Standard Treatment Protocols for common ๐๐๐ง๐๐๐ซ๐ฌ in Punjab.
I was part of ๐ฅ๐ฎ๐ง๐ ๐๐๐ง๐๐๐ซ panel. We had very engaging discussions and I have advocated & secure principal consent that lung cancer (including ๐๐๐ & ๐๐๐ ๐ lung cancer which constitutes approx 40% of lung cancer in India) be part of Punjab government schemes including affordable quality ๐๐ข๐จ๐ฆ๐๐ซ๐ค๐๐ซ ๐ญ๐๐ฌ๐ญ๐ข๐ง๐ and treatment plan, ๐๐๐๐๐ฌ๐ฌ & ๐๐จ๐ฌ๐ญ, 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.
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 ๐
Dear Readers: Wishing you and your loved ones a very ‘Happy Diwali’…Do love, spread hope, and live life in every moment of it ๐
Rise To Survive Cancer 