Talk Your Heart Out: Care and share are vital tools against cancer

Dealing with cancer, in its many stages, has several challenges. Most of all, it is the state of acceptance that most people struggle with – both patient, their caregivers and families. On Saturday, January 18, as 10 people gathered in Lahe Lahe in Bangalore’s Indiranagar, we heard stories that brought fresh hope, and strength – stories that showed us how to overcome our mental distraught when we are unable to accept a diagnosis.

From nurses dressed up as Santa Claus to strangers who appear as messiahs to lone travellers, the 12th session of Onco’s community support group, Talk Your Heart Out (TYHO), was packed with inspiring narrations of what people went through when they had to face cancer.

Defeating cancer, twice

Jason was 22 when he was first diagnosed. A fresh graduate, four years ago when he was home in Qatar where his parents lived, he was doing what most boys his age would be doing, readying himself for the next phase of his life. He was an active person, who enjoyed swimming very much. One day, his routine took a turn of events. On a visit to the pool, he felt too sick to swim and returned home. Thinking that it could just be a common cold, the family went for a check-up, just in any case, to rule out anything serious. He was asked to do some blood tests, which came back with plenty of abnormal counts. The family quickly made the decision to fly down to Mumbai to seek specialist advice. There they conducted further tests which confirmed that he had acute myeloid leukaemia (AML). The doctor advised him to begin chemotherapy immediately, and four sessions later he was declared to be in remission.

With his cancer under control, he decided to move on in his life and continue to pursue his studies. He moved to the US, where one day during another routine blood test Jason found out that the cancer had relapsed. He once again moved back to India and the doctors here diagnosed a further addition to his initial diagnosis of AML, he also 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. More treatment followed, including radiation and a bone marrow transplant. After painful side effects like a significant loss of hair, ulcers in his food pipe, his skin turning blackish and a virus infection that affected his kidneys, a year later, the doctors once again announced that he was in remission and that he could go back home. 

So much happened to Jason and his family in a matter of two years, yet he believes with a mind open to 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.”

The gift of caregiving

The role of a caregiver plays a big role. Falling in line with Jason’s story about the tremendous support of caregivers, Marleen’s story almost set this fact in stone. Marleen was raised for much of her life by her father, after her mother lost the battle to cancer, when she was still a little girl. Her father was her superhero. She had faint memories of how he cared for her mother during those difficult days, being with her at all times, as a friend, partner, and a caregiver. So inspired was she with her father’s patience and comfort at the time of her mother’s illness, Marleen decided to pursue a career being a caregiver. Today, she has helped many patients receive timely care and has supported them in dealing with physical, emotional, spiritual, and also their medical concerns.

“There is no satisfaction like seeing a patient feel better under your assistance and be able to build a better quality of life,” said Marleen as she tried to recollect one of her experiences on assisting a young man for two months while he was being treated for cancer.

“Since being in this profession, I started to also understand my father’s struggles and predicaments as a caregiver – it made me feel an immense amount of respect and pride towards him.”

When cancer strikes the roots

In some cases, luck may not be as favourable. Ananth was raised by his grandmother, from his father’s side. His parents were absent much of this time making a livelihood for their family, in particular, Ananth and his little sister. While in the day his grandmother would go out for work as a construction worker, she would return home every evening to the children who would be eagerly waiting for her stories. Not once had he seen a lack of energy or heightened spirits in her.

Years later, when Ananth had to pursue his higher studies, he left home with a heavy heart, which was still well-nestled in his grandmother’s warmth. When he returned home one time, during his holidays, he was shocked. His grandmother had changed in her appearance, almost beyond recognition. She was bald, her hair shaven, her voice broken and she looked fragile.

“That makeover shook me real bad. I learned then that she was diagnosed with the last stage of pancreatic cancer. She passed away in a month’s time, since that meeting,” voice laden with sadness, but also very visible determination, he told the group how now wishes to work on creating awareness on cancer, in particular on the benefits of early detection, and excavating the socioeconomic stigma surrounding cancer. 

Love of a lifetime

When it was Steve’s turn to speak, he gripped everyone’s attention with a rather unexpected question – “does anyone here believe in ‘love-at-first-sight’”?

Several years ago, in the UK, he worked at a travel agency. One time, his boss asked him to attend a charity event, which he refused. After some persistence, he finally relented and agreed to go to this event. That persuasion, and the subsequent decision, changed his life. “I saw this lady standing at the end of the room and I fell in love. When I got my chance to speak to her, I remember telling her this, “I get this feeling that I am going to marry you one day.” She laughed at the time, but seven months later we got married.” The couple were married for 30 years and had two children of their own, in addition to one child from his wife’s first marriage. However, there was some trouble in paradise.

When she lost her father, Steve’s wife had an emotional breakdown. This swayed her towards the use of addictive substances and alcohol. A few years later, the impact of this began to show up – she started feeling heavy and getting pains throughout the body.

“I tried consulting various doctors at Manchester and most of them told us we had nothing to worry about and it was just a treatable illness. The symptoms started to worsen and one young doctor diagnosed her with cancer, saying she had only seven months left. My brain couldn’t take that, and I started getting mad at everyone. I even fought with my wife, which I rarely did. This hit was big, bigger than anything I could ever take,” said Steve.

He then spent the next seven months, caregiving her and comforting her with all that he could. His wife’s demise left Steve 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.

“Do you think someone would 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 which is meaningless.”

Her words changed Steve’s life forever, taking 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 eyes were welled up while others were forcing the lump that had risen to their throats to go down. It moved everyone, evidently. Clearing his voice, Steve composed himself, relaxed his braced knees, and flashed a bright smile at everyone. 

Others at the gathering also shared their thoughts, mostly focusing on the importance of speaking up against cancer and how it can help touch another’s life and even perhaps change their course of dealing with cancer for the better. The importance of paying attention to the emotional needs of a caregiver was also highlighted. The same opinion resonated amidst everyone present that as vital it is to assure physical and emotional care for cancer patients, caregivers also require support during and following the treatment duration. 

If you would like to share your story, or would like to listen to others sharing theirs, we welcome you to be a part of our community support group, ‘Talk Your Heart Out’. To learn more about the sessions, you can write to us at community@onco.com.