“Tenacity is one of the prime characteristics of our human race … push us down, lock us up, but we shall find a way … always!”
Just as cancer affects your physical health, it can bring up a wide range of feelings you’re not used to dealing with. This is true whether you’re a cancer patient or a caregiver.
Often the values you grew up with affect how you think about, and cope with cancer. While in our society it is often considered taboo to talk about cancer, there are still many who:
- Feel they have to be strong and protect their loved ones
- Seek support from family members, friends or other cancer survivors
- Ask for help from counselors or other professionals
And this is how Talk Your Heart Out, or as we lovingly call it TYHO, took shape, one year ago. Our intention has been to provide a safe space for those seeking help in coping with cancer, by including them in our community.
Over this past year, we had several gatherings where we exchanged stories and experiences from different cancer journeys, honoured brave warriors, helped inspire courage in caregivers, and widened our circle of support, touching over 300 lives so far. Our sole aim from day one of TYHO remains intact: to make sure nobody battles cancer alone.
Recently we reached a milestone when on the occasion of World Cancer Day, in February, we conducted a marathon of Talk Your Heart Out sessions in six different cities of India – chalking out a community circle on the map of India by covering the east, west, north, and south.
Another milestone for TYHO was marked in April, when we conducted our first online event, attended by 40 participants from across the world.
Here we take a walk down memory lane to reflect on some key moments from across the 20 sessions of TYHO we have conducted this past year. Together, this bouquet of moments is an honest representation of one year of TYHO.
She believes that her son was very much like Gautam Buddha. Although a young boy and suffering from cancer, the boy had the wisdom to ask his parents to not be angry with the hospital staff as they were trying their best to treat him. He requested them to do something for them in appreciation of all their hard work. Supriya has obliged, and every year since she has been visiting the hospital regularly and hosting small parties in remembrance of her little boy.
“This incident taught me that resilience and acceptance with gratitude are the core values with which we can go forward with this condition.”
During a summer break when she was 10, Arshia remembers sitting with her otherwise cheerful grandmother, waiting for her to complete the story she was narrating. However, she had abruptly stopped the story and was staring into mid-air. That had confused Arshia very much. Shortly afterward, her grandmother passed. Arshia cannot remember the day or year, just that one day she was gone. “Nobody told us kids what was going on. The word cancer was still not a child-friendly word,” she said, her eyes moist.
“I never felt I could talk about this, but this support group felt like a safe-space where I could share memories of my beloved grandmother.”
After he lost his mother to stage 4 mouth cancer, Radhika’s boyfriend drifted apart from her. Not only for the fact that they lived in two different cities, in two different countries, but the distance grew larger as both Radhika and her boyfriend tried to cope with grief in their own ways. As a therapist, today she understands the different coping mechanisms people use to cope with grief. Something that she failed to do 10 years ago when her boyfriend’s grief was all too alien to her, making them part ways eventually – breaking a promise she had given his mother.
“I still carry the guilt from ten years ago. For not knowing what to say, or how to handle the situation, or how just to simply be there for him.”
Cancer came in threes for Bejoy. With a history of cancer in his maternal side, there was constant anxiety looming in his life. It struck first when his grandmother was diagnosed, he was still too young to understand the impact of cancer. Later on as an adolescent, the same word and the same weight of emotions struck him when a friend of the family announced his diagnosis. Lastly, cancer took away his favourite aunt.
Reflecting at it all, he was very aware of the worry hanging over the family. Not just for the older folks, but the younger cousins as well.
“You are proactive, you make sure you get your yearly check-ups done. The key is to not think too much about it. But to get you and your family protected. That’s how I’ve learnt to cope.”
It was clear when she spoke at one TYHO session, that Matilda was opening up for the first time, to sharing her story with others. Her mother was diagnosed with 4th stage metastatic lung cancer, at the time and was refusing to cooperate in getting herself treated.
Desperate for a solution and support, Matilda broke down about her helplessness and fears with the group. People advised her, supported her and reassured that everything was going to be fine.
Following the session, we connected Matilda with our care managers who guided her through this difficult phase and supported her through the necessary treatment advice for her mother. On her part, Matilda was pleased that she was able to open up and speak about it. It lifted some of the fears and sadness from her shoulders. She expressed how happy she was that there was a community of people around her and that she was not all alone in this fight against cancer.
“I never knew what cancer meant. I mean, I knew it was a disease that was associated with painful things. But I never thought that I would experience the pain first-hand.”
After attending the first TYHO session, one felt that the group might not be able to help Krishna Palapetty with anything. But, since then, he has attended every single TYHO event we have conducted and has evolved from being angry, bitter and stricken to a positive, friendly and cheerful person.
Krishna’s father had suffered from lung cancer and lost his life four months after he was first diagnosed.
“We met a general surgeon, a cardiologist, a neurosurgeon, a pulmonologist, a radiologist, and many oncologists. I became very familiar with the hospital routine, I learned to speak medical jargon fluently. But dad grew weaker by the day.”
While wading through the myriad of emotions, fears, and hospital appointments, Krishna had found solace in a friend. But tragedy came two-fold. Two weeks before his father passed away, he lost his friend to heart failure. His only pillar of strength was gone.
This would explain his state of mind at the first TYHO session he attended. However, over time, through conversations, through exchanges, he had begun to come to terms with his grief and emotions.
Krishna is a true inspiration in how he looks at life and how he has managed to turn over a new leaf.
You can read more of his story here.
Dr. Arjun was commissioned in a remote village in Kodagu near Kutta and he used to cater to nearly 3000 patients on an average in a month.
He shared the story of one particular lady who was under his care for cancer treatment. She was the sole breadwinner, and given the geographical location and limited availability of resources, her family couldn’t afford the treatment. As a doctor, he knew that the woman was going to pass away, nonetheless he still continued providing care and medical support.
At the session, he shared this plight of doctors where they have to remain hopeful and strong even in situations where their medical tests show no signs of hope.
This experience put a perspective into understanding the psyche and temperament of doctors who put their best efforts into saving a patient’s life, and in particular of those doctors who have chosen oncology as their specialty.
“The doctors said nine months. It’s been three years since, and by the grace of God, my mother is still with us today.”
Munmun’s mother was diagnosed with stage four breast cancer three years ago. She went through 12 cycles of chemo over a span of four months.
The diagnosis shook the family, and they took some time coming to terms with it but eventually they did. What the doctors deemed nine months, has extended to more than three years now. The reason for this, Munmun believes, is hope.
“All I ask of every caregiver is to radiate hope. Because hope is contagious and it is powerful. It is also perhaps why we are happy and why my mother is doing well.”
Oupagya gave us a peek into a traditional household. While Rajput men have been known to show exemplary acts of bravery in history, Oupagya’s aunt showed us how it is done when cancer tries to ruffle your feathers. She weathered not only stage 4 breast cancer, but also the implications of patriarchal beliefs and the limitations that women face within such a household where women rarely speak openly.
“Bua encouraged all of us to get screened regularly. She was probably the most empowering woman in the family. Despite battling a life-threatening disease, she was beautifully informed. She made it a point to read to us about precautions that we must take to keep cancer at bay.”
Her insistence that women need to get screened after the age of 40 saved Oupagya’s family from a looming danger, when her mother was diagnosed with cancer as well. Timely screening and intervention helped her mother battle cancer in a more fruitful manner than her aunt.
Early detection of cancer can greatly improve its prognosis.
He gripped everyone’s attention with a rather unexpected question, “Does anyone here believe in ‘love-at-first-sight’”?
Steve spoke passionately about his wife of 30 years whom he had lost to cancer. Her death left him devastated.
He had a hard time coming to terms with the fact, and started indulging in addictive habits. After some persuasion from his family, he finally decided to give these habits up and travel the world. On a trip to Bangkok, he met someone who changed his thinking, and his life, completely around. “How many people do you know who have spent 30 continuous years with their loved one, being there for each other at each moment? Go ask anyone you know. You should rather cherish the beautiful memories and be proud of your loved one rather than mourning for her.” Her words changed Steve’s life forever. He decided to take life one day at a time, in a positive and more confident manner.
As his last words trailed off, shaking slightly, remembering the journey, there was a heavy silence. Some participants’ eyes welled up while others were forcing down the lump that had risen in their throats. It moved everyone, and more so to see that Steve had sprung back to life with his wife’s memories preserved deeply in the heart.
Jason was first diagnosed at the age of 22. An aspiring student living in Qatar and ready for university, cancer altered all his plans. He first beat acute myeloid leukemia (AML), but soon after, he got diagnosed with Hodgkin’s Lymphoma. This was a difficult situation, as it is very rare for both the cancer types to occur at the same time.
So much happened to Jason and his family in a matter of two years, yet he believes that with positivity anything can be achieved. He fondly remembers the support, care, and love he received from not just his parents, but also the nursing staff and co-patients at the hospital where he underwent his treatment. “This once, it was Christmas eve, and the nurses came dressed in Santa Claus outfits. That was really sweet.”
In Jason’s words,
“Tenacity is one of the prime characteristics of our human race…push us down, lock us up, but we shall find a way…always!”
You can read more of his story here.
Just The Beginning
The stories I shared were each different to the other, but there was a common emotion that connected them all. Caring for someone with cancer teaches us about life, in a very harrowing way. It shows us what is important, and what is temporary.
Talking and sharing helps us learn and teach. Talking is also relieving, it helps us get rid of the painful emotions that we have been carrying around inside us. Speaking about an incident, an experience, or a feeling, helps us come to terms with it. Talking to a group of people who have also gone through a similar experience, who can understand what it feels like, and who empathises with you, is an effective way of releasing pent up sadness. This is why gatherings like ‘Talk Your Heart Out’ are important, essential even, as they help us deal with an aspect of cancer that is not addressed inside the four walls of a hospital.
I invite you to read more of our stories, the experiences we have had, and the exchanges we have shared here.