KarvaChauth, Kusum and I

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Today, India is celebrating a unique, beautiful tradition or say festival called “Karva Chauth”. And I would like to share today about how my love, my life and my wife Kusum aka Vibha aka Pari and I have seen this festival, our relationship with “Karva Chauth”.

For my friends and blog followers abroad, “Karva Chauth” is a festival celebrated especially in Northern India, where married women ‘fast’ (without even drinking water) from sunrise to moonrise for the safety and longevity of their husbands. Today, I am not going into discussion why women, why not men, or scientific logic of this (which seems not though)……but yes, it is about KarvaChauth, Kusum and I.

On Karva Chauth, there was always that amazing feeling of love in air. This actually used to start a day advance of KarvaChauth when Kusum (as per tradition) used to put Mehndi (Heena) on her hands. And then we used to had most beautiful dinner of year…..a candle light dinner at home, romantic music on play….I was the one who feed dinner to Kusum with my hand, as her mehndi on hands were still wet so she cant eat food by herself. Eyes of Kusum speak so much that moment and every word was love, care and this beautiful relationship of husband & wife.

Then in 2012, she was diagnosed with last stage Cancer. That stupid girl still wanted to fast for me but Doctor did not allowed of her health and targeted therapy medication which cannot be given without food. Then I shared with Kusum, if Karwa Chauth has any power to longevity of life then I would like to fast for her. And I started this fast since 2012.

Every year, I used to fast for her long life and our love….Despite her poor health, we celebrated it with all traditions…She used to wear a Sari, mehandi, prayers, then long wait for moon. It never appeared on time HAHAHA. And you know, once children born, in our case Suryansh (our son), they become more exciting than us…Suryansh & all neighboring children keep asking each other “Has Moon rise (chand nikla kya?)?”….and once it came, a big shout everywhere “nikal gya chand (moon rise)”. Then opening of fast after looking at face of your partner and moon, through a mesh in presence of a diya (oil lamp).

But last year (2018), things were different…..Kusum had cough and we came to know that her cancer is progressing and lungs are chocking……..I don’t know why, Kusum became adamant to have fast herself for me…She called our oncologist and begged him for permission……….She has fast with full tradition last year. And I did fast for her….I jokingly challenged her that lets see whose fast has more power  but I forgot that she was such a beautiful soul and it seems God listened to her….I lost, She win…..She left me after few months!!

Today, its KarvaChauth again…….and I am missing you Pari sooooo much…..When I woke up….I was blank, not to understand what to do….I went to breakfast table as I have nothing to fast for now…..but sorry jaan, I was not able to eat…………..

So yes, I am fasting today again on KarwaChauth…..I am fasting for my kusum, my Vibha, my love…..also I am fasting today for all of you lovely couples out there…May God give you all love, long, happily married life and togetherness “Happy Karva Chouth

In love, memory of Kusum

Vivek

Sharing is Caring

I was invited to share #Patients#Caregiver #PatientAdvocate perspective, learnings & expereince and to present & record the same as training modules for Ministry of Human Resource & Development, Governmant of India 🇮🇳 

I did shared, presented and recorded on two very important areas in fight with Cancer:
1) ‘Caregivers in Cancer‘ &
2) ‘Cancer and Clinical Trials

I am honored to become part of this panIndia education drive.

hope that the struggles, expreince and learnings Kusum and I had and what we did differently in our fight with Cacner (I would say incredibly successful fight)…will guide and help millions of new Cancer patients & families in their fight and win against Cancer 🙏

#RiseToSurviveCancer 

#SharingIsCaring

In love and memory of Kusum 💕

Running For Cause

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It is 7 months now when our loving, brave Kusum (aka Vibha) passed away after surviving 7 years at stage 4 Lung Cancer (non-smoker) spreaded to Brain, Bones & so on

In honor & tribute to our fighter girl Kusum and to raise awareness of Cancer Research…..Suryansh & I, father-son duo has started running for this cause.

Sunday 1st September, was our first run for this cause at #DwarkaHalfMarathon. We both has talen pledge to continue to run in these running events to raise awareness for Cancer, Reasearch, Patient’s Voice and motivate other Cancer patients.

Hope these small setps will also help to create awarenss and advocacy.

#RunningForCause
#RunningForCancer
#RunningForKusum 💕

Best wishes,

Vivek and Suryansh

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