THE PAIN OF PARENTING WHEN IT COMES TO CANCER

October is recognized all world over as the Cancer Awareness Month. Dozens of organizations are in overdrive, hosting various activities geared towards cancer awareness, free screening and patient support. The buzz is high and the corporates are very generous.
 

In one way or the other, we are all affected by cancer. There are those who have survived it; those who have lost loved ones; those who, in various capacities, have been caregivers of patients with cancer; and ultimately those who have supported a cancer patient from a distance.
 

My experience has been a mix of some of the above. I have been a caregiver at professional level and at a personal level, I have lost loved ones and I have supported some from a distance. Where I am coming from, I will always have a soft spot for two sets of people: the survivors, who have been to hell and back, and despite their harrowing experience, they bravely soldier on; and, the caregivers, the often unappreciated group who are promptly forgotten soon after the patient passes on or is declared cancer-free!
 

My special caregiver moments are plenty but today I focus on the underprivileged children and their caregivers. During my internship year, I spent three months in a children's ward. A section of it was set aside for the children with cancer. My first day there left me depressed. Here were little ones of all ages from as young as a year old to the pre-teens, all ailing from different types of cancer. Some cancer masses had distorted the physique of these beautiful little angels, some had colostomy bags where colon surgery was unavoidable to alleviate their morbidity, yet others were lying listlessly in bed, having a really bad day.
 

I only needed one day to feel low. The next day, I opened my eyes to the wonder in this room. The children took my breath away. They were wise beyond their years and extremely smart! They taught me love and kindness like no one ever could. They already knew my name, they would steal my spectacles and take turns wearing them, they pushed my trolley whenever I was going around doing procedures and by evening, they had become a part of me. I kept snacks and sweets in the car for them so I could always take them a treat every morning. They knew when I came in and waited for me at the entrance. They carried my bag and asked about my night or my weekend if I had been off duty. They noticed when I changed hair styles and would approve or loudly disapprove.
 

By the end of the first week, I had singled out three, whom I had noticed were never visited by family and their treatment plan never indicated discharge home after a round of chemotherapy. I learnt from the ward nurses that they had been in hospital for about three years and that they could never leave until their treatment was complete. You see, these children came from terribly poor backgrounds and their families could not even afford bus fare to the hospital to see them. If they ever went home, they may never be able to come back in time for their next round of chemotherapy. They had accumulated hospital bills to the tune of millions and their families could never even afford to pay these amounts.
 

Never in my life had I met children with such tenacious spirit. They discussed the coming Christmas in the hospital like it was normal. Some had siblings they had never seen. Others could not recall when they had last seen their family. I wondered how they managed to wake up in the morning with such cheer. I began to look forward to seeing them every morning like they were my own. They would regularly talk to their parents on my phone and even without knowing these tough men and women on the other side of the country, I slowly began to walk in their shoes.
 

I cannot tell when I crossed the line to being more than just a clinical caregiver, but I became the default parent. I made sure they always had all their toiletries, slippers and warm sweaters for the cold season. I brought them toys and story books and a home-made dinner whenever I worked night duties. I learnt all about their homes, backgrounds and even their hopes and dreams.
 

They all longed for one thing in common, to get back to school. These children who had met under such difficult circumstances become each other's keeper. They kept bedside vigil for those who were deathly sick. They mourned each other when one of them left permanently to meet his maker. They celebrated those who were done with treatment. They encouraged those going through the dark days of chemotherapy with nausea and vomiting.
 

They created a whole new family in this little space. I was privileged to be part of this little family. These children were amazingly smart. At such a tender age, they knew their chemotherapy regimens and the individual drugs by name, they knew the schedules and when they were due for the dreaded bone marrow biopsies. They understood death better than any adult I knew and would console the parents in the ward better than the trained professionals. They never thought of dying themselves. It was not an option for them.
 

All too soon, I had to move on to my next rotation. I had nothing to worry about. They always found out which ward I had gone to and would call me on the in-house hospital telephone to wish me a good day and ask for whatever provisions they needed. I kept my end of the deal and visited them as often as I could. My time in the hospital came to an end and I had to leave. I kept tabs, and never stopped supporting them.
 

It was therefore very difficult for me when the nurses would call and ask me to get to the ward urgently. It meant that they feared we were going to lose one of them. I was not the parent, but had to hold fort until the parents got there. Sometimes we would have to send them their fare to make it to the hospital. It was heart-wrenching to see a parent only come to the hospital to bid their child farewell.
 

The sad news is that I lost all my three ‘adopted' children over a period of a year. It broke my heart and though I have moved on, I still remember them very fondly. Through them, I walked the shoes of a caregiver. And I can categorically say that these shoes hurt. I have a healthy respect for anyone who has walked down this road, and more so if a child was involved. I celebrate all nurses who take care of children in the oncology units. They are the epitome of humanity.
 

I wish to challenge all of us in our little space, to spare a thought in this month, and do something small to improve the life of a cancer patient, a cancer hero/heroine who has managed to tame this beast and to the caregivers who stand with them in their darkest moment. For those of us in a position to influence policy, do not tire in the quest to have favorable health care policies that support screening, diagnosis, treatment and rehabilitation of cancer patients.
 

Get your screening tests done today!