Make a real difference – how to support teen cancer survivors and their families

As the 2019 Hollard Daredevil Run approaches, it’s vitally important to point out that testicular cancer is a disease that also affects teenage boys. In fact, one source notes that 15 to 35 year olds are most at risk.

As early detection is always imperative in cancer treatment, teenage boys should self-examine their testes on a regular basis to detect any warning signs – most especially lumps and swelling. More on the symptoms can be found here.

To help raise awareness of teen testicular cancer, boys are invited to join in on the purple Speedo fun at Zoo Lake on the 15th of March 2019.

Transcending gender and race

With that said, it’s equally important to point out that teenage cancer transcends all gender, race and income boundaries, and we should know more about the profound consequences it can have not only on survivors themselves, but on survivor families, too. According to CANSA,

Please also remember that [teenage cancer] is just as hard for the parents and siblings as it is for the patients to be on this journey, and they need your consideration as well.

A lack of understanding

No matter who you are, cancer is an extremely emotive word. But for far too many, it’s very much more than a word – it’s a catastrophic reality.

This catastrophe, medical professionals and social workers point out, is most often something quite incomprehensible to those of us on the outside “looking in”.

Unfortunately, this lack of awareness and understanding may hamper our attempts to offer meaningful assistance.

Isolation

In worst case scenarios, an insufficient appreciation of cancer’s effects may actually drive us away from a family member or friend with cancer. Our children may even distance themselves from a good friend after his/her diagnosis.

Cara Noble, CANSA’s National Relationship Manager for Service Delivery Programmes, points out that an absence of support from friends and family may produce a profound sense of isolation – one of the silent, but most pernicious, effects of cancer.

This isolation can be most destructive to the quality of life of teen survivors undergoing treatment.

This cannot be stressed enough: It is of utmost importance that survivors and their families know that they are not alone.

Knowledge is power

To offer meaningful support – the type of support that a family most needs – we all have to inform ourselves about what survivors and parents actually go through.

Only then can we act with truly significant degrees of compassion, sensitivity and kindness towards those in the grips of a devastating disease.

“Stuck in the middle, alone and isolated” – The difficulty of being a teen cancer patient

Our teen years serve as a time of metamorphosis, during which a dependent child transforms into an increasingly independent young adult. We individuate from parents, but we also become hypersensitive to social relations. We become self-conscious, and body image retains a central place in our concerns. For older teens, long term decisions about education and career paths need to be made.

Teen cancer can disrupt the above processes and exacerbate negative emotions surrounding body image (e.g. loss of hair, weight changes), the sudden loss of numerous friends, and it may evoke feelings of social rejection.

Teens stuck in hospitals for months on end miss the school environment terribly, along with other peer goings-on like sports and cultural activities.

A very common occurrence, sadly, is that friends may, over time, be in short supply. This could be for a variety of reasons, including a superficial understanding of the hardships experienced by the survivor. Parents of friends may also show a stunning insensitivity towards the difficulties of the situation.

Not to be underestimated

The emotional effects of a teen diagnosis and treatment can hardly be overstated. Dr Jennifer Geel, a CANSA funded researcher, says,

…a diagnosis of cancer puts everything on hold. They struggle to manage themselves while their lives are threatened. There are high rates of depression among teen patients, but it’s often undiagnosed.”

Thrust from childhood into an adult world

Another incredibly important aspect surrounding teen cancer is the lack of teen-specific cancer wards. Although individual hospitals have their own guidelines, teens with cancer are typically transferred from paediatric wards to adult wards at 13.

The sudden and dramatic change from an environment that is warm, colourful and safe to one peopled by older men and women (who could be more than five times the age of a young teen) is extremely distressing.

Paediatric wards allow parents 24 hour access, and beds and chairs can be set up so that a parent can sleep while their child sleeps, too. In adult wards, by contrast, parents are often restricted to visiting hours.

Of the resulting and unpleasant confusion, Cara Noble writes:

There is so much confusion on how they should be coping.  Are they allowed to cry with pain as their eight-year old neighbours 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?

Collateral damage – the devastation of teen cancer on the family

The suffering of parents is often overlooked, and it’s certainly one of cancer’s most destructive side-effects. Parents’ entire lives are held hostage by the disease, and their financial, emotional and physical wellbeing are casualties unseen by even those relatively close to them.

Parents are nurturers by nature, and our most fundamental instinct is to protect our children from harm in all its forms.

Little is as disempowering as the diagnosis of a very serious disease – parents are left completely helpless, bewildered and beside themselves with worry.

Parental disempowerment – the pervasive feeling of helplessness

Parents have to look on while their child is in the type of pain most of us will never come close to feeling; they have to look on as their child returns barely conscious from major surgery; they have to look on while their child loses his or her hair; they have to watch while their child suffers extreme bouts of nausea and fits of vomiting; they have to watch while their child (possibly) loses friend after friend.

Sometimes, they have to watch helplessly as their child plunges into the depths of despair.

Primary caregivers – like mothers – often have to leave their employment to take care of their child, resulting in severe financial distress or even in bankruptcy.

Many parents have to travel long distances to hospitals and care facilities in urban areas – the costs in terms of time and money only increase the already too-heavy burden.

Parents’ health receives little attention, and other children in the family may feel neglected. It is common for siblings, just children themselves, to take on increased responsibility around the home.

Don’t let them go it alone

When it comes to teen cancer, numerous factors intertwine to create a unique set of circumstances that presents caregivers and survivors with an abundance of difficulties.

Through the right type of support, compassion, understanding and kindness, however, we can all make a difference to the lives of survivors and their families.

For further information about supporting children, teens and families affected by cancer, please contact CANSA and find out more about their Tough Living with Cancer (TLC) programme.

CANSA notes that:

TLC support services are vital to these children and their families – they need to know that they are not alone.

Help raise awareness about teen testicular cancer by joining (or getting the men in your life to join) the 2019 Hollard Daredevil Run.