World Lung Cancer Day

On ‘World Lung Cancer Day’ today remembering & honoring my love, my wife “Kusum Malik Tomar” who was diagnosed with Stage 4 ALK Lung Cancer at young age of 29, despite a *non-smoker* .

She survived for 7 yrs with Clinical Trials & Research medicines.

Till she lived, she continued to spread Hope & Advocacy for Research
& to End Smoking Stigma on Lung Cancer in India.

Please remember:

– Anyone with Lungs can get Lung Cancer

– Maximum new Lung Cancer cases in India & globally are non-smokers & female

– Air pollution can also cause Lung Cancer

– Research saves lives.

Best wishes,
Vivek

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Appointed in Advisory Board for Cancer Research by Government of India

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I am so pleased to share that I have been appointed in Advisory Board by Government of India for an ambitious joint Cancer Research project between India and UK

It is an honor as well as huge responsibility to join advisory board and to represent millions of Indian Cancer patients for 10 million pounds (86 crore INR) Cancer Research project between Cancer Research UK (which is the largest cancer research funder in the UK) and Department of Biotechnology, Ministry of Science and Technology, Government of India 🙏.

I am proud to be part of such exceptional advisory panel who have senior leadership of Tata Memorial Hospital, National Cancer Insitiute, AIIMS, King’s college London, University of Cambridge, and University of Oxford.

We the advisory panel met in London to agree the final research challenges for this initiatives. After lots of brainstorming, our bilateral Advisory Panel has set seven research challenges under the theme of affordable approaches to cancer. We are calling on researchers in India and the UK to join forces to tackle these challenges.

Please visit our webpage (link below) which has further information on the initiative, including the scientific remit and eligibility guidelines, our Advisory Panel and our research challenges

https://www.cancerresearchuk.org/funding-for-researchers/our-funding-schemes/affordable-approaches-to-cancer

In honor and love for my wife, my life Kusum Malik Tomar 💕, I hope to continue to make positive impact for our cancer patients and generations to come,
Vivek

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

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Wheelchair to Treadmill – a 193 km journey of Kusum, Exercise and Cancer

In September 2018, my life, my wife Kusum had severe cancer progression when her medicine got resistance on her cancer. It took me around two months to arrange next research medicine for her in India from US on compassionate grounds (as it was neither approved in India and nor commercially available). Meanwhile cancer has spread so much into her lungs and reached first time into bones, abdomen, in addition to already many tumors in brain, adnexa, ovaries etc. She was having constant cough, day and night.

On 2nd December 2018, Kusum took first dose of this research medicine (which is her 5th research medicine in her 7 year long fight with stage 4 lung cancer) and luckily she got surprising almost complete relief within a week. It was Hope, It was Life, It was Happiness all over with us and our wonderful family.

However, things turned down again only in next 10 days when her hands and legs were started to chock. Her veins of hands and legs got blue, rock solid hard, even no one was able to take sample for blood tests. There were severe thrombophlebitis. Even if she was trying to move, the pain was unbearable. Treatment started and one suggestion also came from our Doctor that things might improve quickly if she can walk little bit but also recognized that with this pain walking seems not possible until situation improved.  She became wheelchair-bound.

Within couple of days, this brave girl told me that she wants to fight and support treatment and she wants to try to walk. To help her efforts, Dr has put her on morphine to help to bear the pain while she will take this challenge. Still the pain was horrible and hard to see Kusum struggling.

But this girl did it…. she started with efforts to try to stand up and then walk with help of walking sticks….short walk multiple times a day…Kusum’s lovely father-in-law became fully dedicated partner to support Kusum in this mission while I was away managing medical support and bread earning. I also gifted her a activity tracker watch to help her to remain motivate in this challenging situation……By mid January (only in around 3 weeks time), kusum was not only walking but was running on treadmill. (The collage pic  as below in this blog,  in anticlock wise, is actual presentation of that journey of Kusum)

It was unbelievable to all of us including Doctors. She continued with her walk and exercise until she got admitted to hospital on 23rd Jan 2019 because of other newly arisen life threating complications of cancer and then she passed away on 5th Feb 2019 while still spreading smile and hope.

Post her demise, one day, when it was so hard to breath without her, I looked at her items to feel her.  One item was her activity tracker watch and when I look at it, I was shocked and surprised to read that in this only one month duration from wheelchair to treadmill before getting admitted in hospital on 23rd Jan, Kusum had walked 193 Km. How many healthy persons among us walk this much, what she did from this one month journey of wheelchair to treadmill.

fitbit (2)Yes, it was great example of Kusum’ s extraordinary courage but it is also an example of how exercise helped to fight, even with dreadful disease like Cancer. If it was not this efforts , walk and exercise she would have succumbed to situation month back and may not have survived that last month / those weeks when she was walking running like normal and enjoying with family so beautifully.

And this was not the first time, when Kusum fight with her Cancer and poor situation with help of exercise:

Daily Vomiting and Diarrhea   Vs     The famous pink cycle   – You may remember The Pink cycle, who got famous in Kusum’s interview with Zee news in 2015, when she was having 4-5 daily vomiting, Diarrhea & bleeding due to Cancer treatment side effects and became very week with hard to walk. She asked my father Mr. Satya Prakash Arya who was her amazing friend in addition to her father-in-law to purchase a bicycle for her. And that bicycle helped her to build required stamina to live quality life and fight back strongly with Cancer during that time.

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Semi paralysis     Vs   Aerobics at ISTA and The inspirational run in Pinkathon – By the end of 2016 Kusum had progression in brain with multiple tumors on that time medicine which leads to many seizures and even horrifying semi paralysis. By Jan 2017, she got her 3rd research medicine which controlled her cancer progression remarkably however her physical health and stamina was still very poor. To fight with this situation and disease, she joined an aerobic fitness center ‘Ista by Rashmi’. After 9 months of efforts and excercise, in September 2017, Kusum was running In Pinkathan Delhi, India’s biggest women’s run. That run has inspired thousands globally and her run was covered by leading national news agency ‘The Hindu’.

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Message to all Cancer patients out there (and I think to everyone not only Cancer patients) –

Exercise do help in so many ways in your fight both physically and mentally. It helped significantly to fight with disease including Cancer. It helped with mental health including depression by secreting hormones which makes you positive. I know personally that especially in Cancer it is so hard and many times not feasible and possible to do exercise but dear cancer fighters then please WALK…..walk which could be few meters and minutes to one day, kilometers and hours…..It can help you in a way, you can’t imagine.

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In love, memory and honor of Kusum,

Vivek

#Cancer   #Walk   #Excercise  # Losing is not an option

Happy Birthday Kusum!!

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You would have been 36 year old today my love my life my wife, if Lung Cancer and not having timely access to latest treatment in India would not have stolen you from all of us!!

You know this 15th June has become the most important day of year for me, even much important than the day you came in my life, our marriage anniversary….Because it was this day that made every day of year relevant…Because It was this day which make us realize that look this brave girl have beaten cruel cancer & death for one more year….Because it was this day which ensured all the happiness of Suryansh, our family, friends, everyone who loved you, admired you and for me…you can’t imagine.

But this year, everyone in family are afraid of this day. As this day is approaching, there is more and more uneasiness and uncomforting. I was wishing that this day shall not come this year, when you are not between us. I am so afraid jaan, how this day will go….how our parents would able manage this day, it is impossible to imagine this pain of them….and Suryansh, he is not saying anything but clearly got irritated and frustrated internally.

It is only 10 mins left to 12 am, remember every year how Suryansh and I bring rose and cake for you for midnight surprise birthday wish. He just got slept while asking ‘Papa can we have a magic to make anyone alive again, even for once?’ and these uncontrolled silly tears of mine are expressing how helpless I am on this innocent question of Suryansh………..

Uffff….anyway….Birthday girl  – here is the plan for your birthday celebration today: As you like to celebrate every year it would be same this year too….I am going to ‘under privileged Blind School’  and ‘Deepashram for special needs kids’ for your bday celebration. I am sure you will meet me there with those most innocent and beautiful creature of God…just like you, our angel.

As they say legend never dies, you the inspiration of not me but family, friends and millions of people in India & globally, you a true legend, cancer fighter and one of the most beautiful, kind, caring person, would always remain alive with us….Happy Birthday Kusum, Happy Birthday!!

Hope, Health and Love for all,

Vivek

Deadly Air Pollution

Suryansh and I are proud to continue our love, our inspiration Kusum’s work of advocacy for betterment of our country and mankind. In continuation to same, we have supported very important short film by globally renowned news agency ‘Al Jazeera’ on ‘Deadly Air Pollution’.

Please must watch this complete film as available at below link to understand on how this invisible killer ‘Air pollution’ killing us, over loved ones, kids and generations to come through lung cancer, respiratory diseases.

Let’s work together to tackle this invisible killer……as we can avoid anything but NOT ‘Air’, NOT ‘Breathing’.

PS: You can also see a passionate, caring oncologist-in-making as Suryansh at 23:37 min in video.

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Link to Aljazeera’s short film on air pollution:

#MyRightToBreathe       

#AirPollution

#LungCancer     #LCSM    

#Love      #Hope

#RiseToSurviveCancer

Best wishes,

Vivek

Hope and Regret – final 10 hours of Kusum in this world!!

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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

Research Matters

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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!!

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

Vivek