Deciding to undertake your Masters research with participants who could die, and kids at that, is not exactly lighthearted stuff. The major concern from my professors, when I presented my research proposal, was that I had not sufficiently thought about the ways in which the research on the experience of childhood cancer would affect me.  

Needless to say that by the time my little hatchback groaned up sir Lowry’€™s Peak at the start of my journey to East London in January 2011, I had various checks in place to deal with the possible ‘€˜trauma’€™ I may encounter in the research field.

I expected insight into illness and death, but instead learnt a little bit more about how to live.

I have had a long standing interest in childhood cancer and was interested how children diagnosed with cancer and their families experience cancer in the context where life-saving treatment meant leaving home for months.

I decided to base my research at Frere Hospital in East London which houses the only paediatric oncology ward in the Eastern Cape. The implication of this is that many children need to spend months, and sometimes more than a year in hospital as home is too far away to return to between treatments. Many of the children were unaccompanied by an adult, but some of the younger children did have a parent/grandparent to share the cancer experience with them. For these parents it meant moving into hospital suspending at times studies, work or dreams in order to undertake a cancer journey by-proxy.

The astounding thing about these kids was how ‘€˜not-sick’€™ they appear and behave. One of the mothers quipped: ‘€œIf people saw these kids, they would ask ‘€˜why are they here? They are not sick?’€™’€

The children were only too happy to test the old jungle gym’€™s limits on the rare occasions they got outside. On the days they were locked in the ward they would play games, build puzzles, draw or turn the narrow hospital corridors into a soccer field.   There were times that they were ill and would curl up in their beds, refusing to even look at me. But as soon as they felt better, they got on with life.

One of my most endearing memories is of a little boy who was usually walking around with a smile which could sell toothpaste. One day I went to say Hi while he was receiving chemo, and my smile was met by a glare.. Probably not more than 3 hours later, he was feeling better and the two of proceeded to blow and pop soap bubbles.

As a result the children spent many hours in the hospital trying to occupy themselves. The girls loved school work, but unfortunately the single teacher servicing the hospital ended spending, at most, only an hour a week with them, and the children fell further behind in school work. This however did not stop them from taking there workbooks and trying to figure out what to do themselves.

I spent six weeks in the ward at Frere, just being with the mothers and children in the ward. The first few days sitting around watching TV, staring into nothingess was driving me insane. And then one day it dawned on me- this is what the mothers and children were going through day in and day out for months on end.

 Yet they never appeared bitter. Although they expressed frustration and anger at the deficient health system which was making life so difficult for them, they were not bitter about the decision they made. The prevailing thought was that this was their child and this was what they had to do. Not only that, but they found ways to ‘€˜make-do’€™ within the situation. Some of the mothers got to know the doctors and would demand a certain doctor to treat their child. Some of them knew that organisations like CHOC had resources and would ask them for help, such as organising a birthday party.

What I learnt is that the disjuncture childhood cancer brought about in the daily lives of these famlies was more a system of a crippled public health system and social system than a biological disease. Some of the children who participated in my research were very ill and some passed away, yet I never once felt a morbid aura levetating through the ward. Rather, the challenges were acknowledged and the pain felt, but that did not become the prevailing definition of what childhood cancer means in a resource strapped province.

Children kept on playing and learning and mothers kept on planning and dreaming. It is so easy to get become defined by the hardships in our life, but what my research participants taught me was to feel the sadness you have to feel and then move on get on with living.

Learn more about CHOC and its work here: http://www.choc.org.za/

Support East London’€™s CHOC House by donating here: http://www.choc.org.za/eastern_cape.html