Today, it is 3 months 7 days since Cancer made my love, my life, my wife Kusum to left us. Since then, every minute, every second, I am searching for Kusum, want to touch her again, want to hear her again, want to laugh with her again. Other than grief and missing her, there are lot of regrets. This blog is about one of those regrets, thread of hope and what happened in Kusum’s last 10 hours in this world.

Background:

In 7 yr fight of Kusum with this stage 4 lung cancer when she had almost 30 brain mets (including many big), tumors in both lungs, ovaries, uterus, adnexa, abdomen, spinal cord, leg & other bones….and where no medicine every worked at its best and for long time….Then almost every year there were time, when Doctors used to say ‘ ab kuch nahi ho sakta or time has come’…. It does not mean she never got afraid, she did!! Yes she got afraid and that too many times but every such time, I used to tell her that “Dont worry, I am here na, main kuch nahi hone dunga (I will not let anything happened to you)” and she always smiled and said “yes, I know”. In those 7 years, I have not let any stone unturned day and night, to save her while bringing all those latest medicines in India for her, with each other living life the best despite all struggle, spread so much happiness, hope and love and not only with friends and family but also with society and fellow patients.

Final 10 hours:

In final 10 hours of her life in this world, everyone (including Doctors, family members) lost hope as her condition was really poor, TLC were 67000, Oxygen level were too low, BP was low to a level of around 50-20…but she was keep fighting. When her BP reached further down, Co2 level crossed limits in brain and she was unconscious, then closed family members started to say final bye to her except me, I was not ready.

She was alive and it was big surprise to all Doctors in ICU, how she was alive as nothing left in her body, it was multiple organ failures.

My First and Last Goodbye:

After around two hours, when Kusum’s situation further worsened, then someone from family came to me and suggested that I will not able to say bye ever to Kusum if not now…Then I realized that I would be in regret whole life if I will not say final good bye when I have chance…I went inside ICU to say my first and last good bye to her.  Yes, it was my ‘First’ bye too in 7 years of our fight with Cancer. In those 7 years, I never said ‘bye’ to her….It was always ‘milte h or jake aata hu’ (see you). When I went inside, Suryansh (Kusum and my son) was with me and Kusum was in coma with no movement and closed eyes for hours but I know as she is alive, she will listen to me. She always listened to me. With feeling not to miss the opportunity to say final good bye when she is around, I had my final talk with her while Suryansh and I was holding her hands in our hands. Then I kissed her and said ‘good bye jaan’ and as soon as I said it, her heart suddenly stopped then and there and she passed away while holding our hands………. !!   Then I realized, what ‘Hope’ means, then I realized that not only love, I was holding her ‘Thread of Hope’ too.

The motive to share this story is not to make anyone sad but for a message that “Whether Cancer or not, bad time or not, friends or family, please be someone ‘Thread of Hope’. Hope and Love is most beautiful and most powerful thing.”

Share Love, Share Hope, Losing is Not an Option!!

Vivek

This morning when I woke up and checked my Twitter, I found that in an ongoing conference in Seattle, USA on “US National & Global Cancer Health Disparities”, Kusum Malik Tomar & our story and message for Better & Timely Access to Clinical Research & Latest Treatment for India Cancer patients was presented.

I am overwhelmed & proud to hear about the positive impact it is making at global level and inspiring lead Researchers, Doctors & stakeholders to bring latest cancer treatment to India🤞

I was not aware that my this message was being presented in this conference but glad it was. I have written this message in Feb post Kusum’s demise, to thank those who contributed to research medicines which helped Kusum to survive that long & to request them to continue their efforts. Since then this message is getting viral among different conferences & clinical research sector while gladly making some positive impact.

In loving memory of my love, my life, my wife kusum💕, I dedicate my this attached message to all, who is working & contributing directly & indirectly for Cancer Research & Clinical Trials be it Industry, Researchers, Doctors, Health Authorities, amazing Patient support groups & fellow brave & passionate Patient Advocates🙏…Keep doing your best, to help more & more like Kusum to survive longer quality life even at Stage 4 cancer!!

#SpreadHope 
#LovePower 
#ResearchMatters
#ResearchSavesLife
#RiseToSurviveCancer
#LosingIsNotAnOption

Vivek

This blog was written by Kusum before her death and I found this today in draft section of our blogsite. Kusum missed to publish it, I think because of her deteriorated health condition…..As soon as I found this draft blog, I have to share/ publish it for her, in honor and love.

“This word “Stagnant” is itself a termite of life. Oh GOD !!! My whole family is on toes due to my symptoms of progression in Lungs, Bones and many other parts of body. The symptoms increases as night progress like continuously cough, pain in ribs, back & legs and vomiting, with shuffling time not at same time.

I am that person who constantly wants to challenge herself, evolve and grow. ‘Agitation‘ is opposite of ‘Stagnation‘. The one is ‘Life’, the other is ‘Death‘.

As fighting with my symptoms, sometimes I feel that they become fixed after putting so many efforts, medicines however sometimes no improvement. As my cough persists my all family members wake up almost whole night and bring their best so that I can get some relief…..But I can not see them in that situation, therefore I have started to tell them that now I am better and want to sleep so you all also please go to sleep……It is Vivek who still either not sleep or wake-up on my slight movement.

Hoping to get fully rid out of these and to break the Stagnancy in my life…after that new challenges are waiting for me with new treatment side-effects.

When we are no longer able to change a situation; we are challenged to change ourselves!!

Love and Hope for all,

Kusum”

“Kusum” – In Hindi, it means flowers. A flower is a creature of the universe which has the potential to create a beautiful world, influence people with its presence and even leave people with its sweet memories as it is done with life. That’s exactly how she is “Kusum Vivek Tomar”.

Thanks a million Vivek Kumar and Team of “God is not Fair??” for this beautiful tribute to my love, my wife Kusum Malik Tomar and presenting Kusum and my love story so beautifully in this 11 mins audio 🙏

My close, superstar friend “Linnea” inspire me to analyse this word ‘Progression’ from every aspects of life….YUP !!!! I found so many colors, bright, dull, happyness, sadness with “Progression”…

I amazed how it is so variable…At ones end, it means Satisfaction, Coolness, Achievement & Worth-paying and for another side Shocking, Restless, so many question marks, Dissatisfaction. Yes, same coin with two different side… at one side Progression is for Job, carrier, education, achievements immense pleasure and other side for me and my fellow warriors of cancer, beginning of fight again as reports says “Progression” in Cancer.

Cancer Progression is truth!! By hook or crook we have to accept it. It is on us, how we welcome it.

….I do with with fully open arm and smile that is called our spirit and justice with word “Progression”. NO Bias.. HEY Lets accept it with full fighting spirit and smile my cancer friends… LOSING IS NOT AN OPTION

Yes, Lung Cancer has choose Lung Cancer Awareness Month to got progression, aggressive progression on me!!

Kusum Vs Cancer 🙂

 

Hi everyone, l am here to know whether it’s anything wrong with in me or in receptor eyes. I have to challenge my last stage cancer in so many ways day to day. When I appear publicly l always welcome my cancer with a smile since more than six year. I never allowed cancer to carry on me. The reaction most commonly l have from the people in India is “you are not looks like a cancer patient or to my family members Is it true that she has cancer of last stage” oh gosh!! it reminds me all the bad time l had gone through and my family offcourse. Is there any particular tag or tattoo we can bear always with us to show sympathy with cancer😀

Want reaction of all my cancer fellow or who had successfully defeat this demon.

Kusum

Finally, the most awaited day of year came..our brave girl Kusum Malik Tomar has achieved the milestone of 6th Cancerversary ✌️✌️(6 year of survival since diagnosis at Stage 4 with her rare type of ALK Lung cancer metastatic to Brain ….if I include wrong diagnosis & treatment, it is 7 years).

6 months given to live to achieve 6 year milestone…wow, a journey which we were never thought to achieve this long 

It could not have been possible without soulful wishes of family and friends….our heartfelt thanks to each one of you 🙏

 

Yipeeeee :-),

Vivek

Back in 2015, Kusum and I became a member of a global group of ALK positive Lung Cancer Patients & Caregivers,  that group was first of its kind in world i.e. a mutation level patient support group.  The group uphold these by providing Worldwide Information about ALK lung cancer to each other. The group members (ALK+ve patients and caregivers) support one another around the globe (currently members are from 41 countries). The three tenets group members live by are Information, Support, and Empathy, no matter where one may be.

That global group changed our life. It helped us to became educated, empowered to have right discussion with Doctors, select right treatment and become advocate of ourself and for others. As all are patients & caregiver this type of Lung cancer so all discussions are 100% relevant….. You think if 500 patients are taking a specific medicine and share the experience with a new joiner, if some one is in a clinical trial of a new medicine & share experience or if some one meeting top oncologist/ expert of world & share experience….how much it could help a new patient & family. And then our global started to become Lung Cancer advocate, who are working globally to change future of Lung Cancer. Would you believe collection that our global group has collected $539,000 in a year to sponsor the research projects (being assigned to best researches of world, with support of Lungevity) to improve the quality of life and life expectancy for ALK-positive patients

However, in India, we realize that in addition to above there are some critical local/ country level needs which needs to be addressed locally. For ex.:

1. ‘Timely and Affordable Access to Latest Treatments for ALK+ve NSCLC patients in India” – This is so critical as life are at stake here and without medicine, how we could be able to save Cancer patients in India. As of today, in many countries, for ALK+ve patients, there are so many treatment options (including targeted therapies) are available via approval or clinical trials (approx 24 trials going on) however in India, we are no where (not a single trial ongoing for ALK +ve patients in India);
2. “Better Access to Clinical Research & Research Medicines for Cancer patients including ALK +ve in India’;
3. “Better and affordable mutation/ sub-mutation testing facility”;
4. “Collaboration with Doctors and Hospitals for better support and treatment”,
5. “Raising Awareness about Lung Cancer & ALK +ve”
6. “To identify more patients of this rare type of Cancer in India and connect them to global group”
7. To have a updated, validated list ready for NSCLC ALK +ve patients in India, that would not help to support each other but also help Government and Pharmaceutical companies to understand NSCLC ALK+ve disease burden and need of all those latest treatment available in other countries (as delay only cost someone life here in India).

Therefore, we have actively started to work on these needs in India while meeting with patients, doctors, industry, policy makers, hospitals and media. Today, I am member of global group outreach management team and National Coordinator for India to start ALK Positive India, a first group of its kind to identify, provide support and advocacy for ALK Positive Lung Cancer in India.

This concept (mutation level support group) is not only new to patients but for Doctors, Industry too in India.

However as we are sharing along with hard work of ALK Positive India team (patients & caregivers including Amit Mohile (Lead Western India), Sushila Krishnamoorthy (Lead Southern India), Chacko Varghese, Akash, Susain, Jagat S Arora, Sai Narayana, Santhosh & many others) observing positive change.

It is a long journey and we hope not to only to change future (for better) for ALK Positive Lung Cancer but also Lung Cancer in general and patient support for all type of Cancer.

Today, ALK Positive India is getting trained under NGO excellence program at one of India’s best Business school i.e. SPJIMR, Mumbai.

If you know anyone with ALK+ve NSCLC, please direct them to or Are you a patient or caregiver of someone with ALK+ Lung Cancer?

If Yes – please Join Us!!!

Deilats of ALK Lung Cancer patients and caregiver support group:

– Global group website: https://www.alkpositive.org/

– Global group facebook page for ALK patients and caregivers: https://www.facebook.com/groups/ALKPositive/

– India ALK group email id: Share your whatsapp number along with patinet/caregiver name, city and proof of connection with ALK at email id alk.positive.india@gmail.com. We will add you in the group.

#Hope #RiseToSurviveCancer #LosingIsNotAnOption #ALKPositive #LungCancer #India #PatientSupportGroup #LatestTreatment #ClinicalResearch

 

Thanks,

Vivek Tomar
National Coordinator ALK Positive
Patient Advocate for Lung Cancer, Clinical Research and Timely Access to Latest Treatment