The missing middle : Being a teen with cancer in South Africa – a blog by Cara Noble

Being a teenager is a challenging phase of anyone’s young life, especially if you think of the physical and hormonal changes that their bodies go through, and for some of us watching this metamorphosis, the mood swings and sometimes difficult behaviour. It’s also when these emerging adults begin to figure out who they are, to create their own identity and unique view of the world. It’s the leap from Senior Primary to High School and the challenge of trying to ‘fit in’ among their peers. Added to this is the increased demands of parents who expect a teenager to be more helpful around the house and have more responsibilities.

When you add a life-threatening illness like cancer to this already complicated phase of life, it’s disheartening to know that there is little available to support teenagers dealing with cancer in South Africa. To make matters worse, the confusion within the national health system of where to put these young people is becoming problematic. Most hospitals have their own protocol’s and directives and some paediatric oncology wards are keeping teenagers in their care up until the age of 14 years old while others are shipping them out at 12 years old to go and get their treatment in the adult oncology ward. This decision is dependent on the discretion of the hospital’s Paediatric Oncologist. This sudden change from paediatric oncology to adult oncology is an enormous leap. Attention paid to the patient often changes from ‘intensive’ to substantially less so as they are expected to ‘get on with it’ as most adults do.

Behavioural expectations
Our behavioural expectations of a teenager in paediatric oncology and of one in adult oncology differs dramatically. We usually advise the teenager in the adult oncology setting to ‘be strong,’ because they are a young adult now and to ‘behave yourself’ and ‘don’t make too much noise as you could upset the man next to you’.  Compare this to the more child friendly, exuberant and friendly environment offered to the children in the paediatric oncology ward. This can be a very difficult adjustment for many teenagers. Despite their teenage status, they’re sick and unwell with the side effects of treatment, pain and exhaustion. They’re looking for love, patience and compassion from their caregivers and to be allowed to process this journey on their own terms. The adult environment does not always allow for this.

The missing middle
In South Africa, teenagers with cancer, despite being lower in numbers compared to childhood cancers affecting children under 12 years old, have become the ‘missing middle’. The middle that the health system does not cater for specifically as they are too old for paediatric oncology and technically too young to be in adult oncology, often surrounded by adults triple their age. We need to look clearly into how are we handling these teenagers with cancer. Are we doing enough to support them through their treatment process? There is so much confusion on how they should be coping.  Are they allowed to cry with pain as their eight-year old neighbour’s do? Or does being 14 years old mean that this child’s transition into adulthood has come at the cost of feeling pain and expressing how they feel so as to not ‘be a nuisance’ to those adults around them?

We have to think of the psychological effects of putting teenagers into adult oncology wards and if we can do better and create a wing within the adult oncology wards to cater for those who are on the verge of adulthood but still have childhood needs. The current influx of support for children and adults with cancer has made a dramatic difference in their coping and in more positive outcomes for cancer patients, yet the lack of teenage focused support programmes, funding and specialised care is letting these young people down.

Catalyst
They’re the missing middle that need to be a catalyst for non-profit organisations and service providers to see how we can accommodate them better, advocate for their needs and take into consideration their psychological state.  We should fill that gap and allow them to feel that they’re a priority and not a nuisance or inconvenience.

There needs to be a place for teenagers where they can be surrounded by other teens and understood and allowed to be who they are. Until we get there, hospital wards, non-profit organisations and service providers need to include a teenage focus into their childhood cancer support programmes, so that we have more teenagers being supported and cared for while on treatment instead of being stuck in the middle, alone and isolated.

About the author

Cara is the National Relationship Manager for Service Delivery Programmes at the Cancer Association of South Africa (CANSA). She is happily married and has a baby on the way. She is based in Durban, KZN where she completed her Bachelor of Social Science Social work Honours in 2007 and her Masters in HIV and Aids Stigma at the University of KwaZulu-Natal in 2011. Cara has worked for CANSA since 2011 and has worked as a Social worker with children and families affected by cancer and is passionate about helping families cope, adapt and heal through their journey of cancer. Cara manages CANSA’s Children’s Service – Tough Living with Cancer (TLC) and is proud of the services that are offered to children with cancer and their families from CANSA’s offices, around the country.

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