Being the Child of a Survivor

This article is part of the “Healing in Two Voices” series developed within the e-QuoL project, which brings together survivor voices and professional reflections on life after childhood and adolescent cancer.  In this series, professional contributions do not aim to add explanations or conclusions. They create spaces for reflection — ethical, psychological, and clinical — opened by the testimonies themselves.

1

To those wondering what their children will experience

Over the years of follow-up, I have met many survivors who wonder about the impact their story might have on their loved ones.

Some live with a visible or invisible disability. Others suffer from pain or fatigue, or require regular medical check-ups. Many sometimes wonder whether their difficulties are a burden on those they love.

I am thinking in particular of those who question their ability to become parents, to support their children or to pass on to them anything other than their worries, their scars or the after-effects of their experiences.

To all those who recognise themselves in these questions, I invite you to read Gabriel’s story.

Gabriel is 10 years old.

In his own childlike words, he offers us a simple, sincere and valuable insight into what it means to grow up with a parent who has been through cancer during their childhood or teenage years.

What particularly moved me was that Gabriel does not deny the pain, the medical appointments or the difficulties his mother may face. But that is not what defines his perspective.

Where some survivors sometimes see their limitations, the after-effects or their disability, Gabriel also sees courage, commitment, and the ability to reassure and keep moving forward.

And perhaps the way our loved ones look at us sometimes reminds us that we are so much more than our illness or its consequences.

Dr Charlotte Demoor-Goldschmidt. Survivorship Medical Doctor expert – Radiotherapy oncologist. CHU Angers, CHU Caen, Inserm U 1018, France

2

Hello,

My name is Gabriel, I’m 10 years old.

My mum had cancer when she was 16, and I think she’s coping really well with the pain she’s in. She keeps going even though she’s in pain; she’s very brave.

Sometimes I ask her certain questions, and she answers me clearly.

Sometimes I worry about her and she reassures me; she also explains her appointments with the doctor to me when I ask her.

She attends lots of meetings, particularly with Les Aguerris: an organisation that supports and provides information to former paediatric cancer patients. She’s very involved with this organisation because she understands what former patients go through.

I’m proud of her.

Gabriel

3

Supporting a young adult who has gone through paediatric cancer or cancer at a young age means, as numerous accounts attest, bringing to the fore the child or young person they once were. Rarely does it involve reflecting on the impact of that cancer on their parenthood.

Whilst cancer care has evolved considerably over recent decades, today – beyond innovative therapies, or rather thanks to the progress they enable – our therapeutic focus is on life after cancer. How to grow up with as few long-term effects as possible: that is the challenge.

We are exploring these questions – and even more so now, thanks to the e-QuoL programme and all your feedback and personal accounts – regarding how paediatric cancer fits into a child’s development and its impact on their journey to adulthood.

Yet parenthood is still viewed solely through the prism of gamete preservation. Preserving fertility, certainly, but what about parenthood?

Gabriel confronts us with this question. To what extent does childhood cancer influence parenthood? How can we pass on our values without causing anxiety, whilst clearly explaining the specific needs of a mother whose past has been marked by cancer?

Parenting is a process that begins with the desire for a child, then the plan for it, and finally its realisation. It is woven around the stories of each parent and the convergence of their life journeys.

So when the journey leading up to the arrival of a child involves an event as significant as cancer, the process of parenthood incorporates this fact, processes it and gives it a particular flavour. Like parenthood with a little something extra?

Cancer is part of the parent’s history; it becomes woven into their journey. So this story is passed on – that is the very essence of it.

Gabriel’s mother has embraced—because she has no other choice—her own particular circumstances and the needs that stem from them. She does not come to her child to justify an inability or a shortcoming. She comes to provide her child with the meaning and rationality they need. Every parent ought to be able to explain to their child the reasons behind their parenting style. Whatever traumatic events they may have experienced in the past, their impact – whether conscious or not – shapes their parenting.

For Gabriel, his mum’s vulnerabilities are explained by the cancer she has survived. They are the embodiment of that struggle, and she has emerged victorious.

It is a heroine’s journey, as seen through the eyes of a little boy.

It is a journey that makes sense, and that meaning is passed on to Gabriel, giving him a sense of direction.

‘We shape ourselves through the eyes of others,’ Hegel told us. Just as a child shapes themselves through their parent’s gaze, so too does the parent shape themselves through the gaze their child returns. There is no doubt that for Gabriel and his mum, this reciprocal exchange of gazes is one of kindness and mutual respect.

Sophie Laroche, Senior Paediatric Nurse, Paediatric Oncology, Caen Normandy University Hospital, France

4

What Gabriel is saying, first and foremost, is how important it is for a child to be able to ask questions and receive answers appropriate to their age.

We now know that what is often most difficult for a child is not the reality itself, but the inability to talk about it or to get answers to their questions. Adults sometimes think they are protecting children by keeping certain painful experiences to themselves, but this often has the opposite effect. When a subject becomes taboo, the child senses that there is something worrying going on without being able to understand it or put it into words.

Parenthood is also a unique stage of life. The arrival of a child often leads each parent to revisit their own history, past experiences, vulnerabilities and strengths. This is true for all parents.

For people who have recovered from cancer, certain questions can sometimes strike a particular chord. How should one talk about the illness? What should one tell one’s child? How should one answer their questions? Should one tell them everything? Is it possible to protect them without hiding anything?

These are legitimate questions. They do not indicate any particular vulnerability; on the contrary, they reflect the care you have for your child and the relationship you wish to build with them.

When certain worries become overwhelming, it can be helpful to seek support. Psychological support can be beneficial before planning to have a child, during pregnancy, as part of assisted reproductive technology, adoption or after the birth of a child. Asking for help is not a sign of weakness. It is sometimes a way of looking after yourself, your child and your family.

Gabriel’s story shows us that it is possible to talk about cancer without it becoming a burden for the child.

Thus, it is not the fact of having experienced difficult events that poses a problem for parenting, but rather when these events cannot be spoken about, explained or shared.

For a child, the burden of such experiences stems not so much from the intensity of the events themselves as from the secrecy surrounding them.

And perhaps the most reassuring message Gabriel conveys to us is this: children do not need perfect parents. Above all, they need parents who are present, capable of listening, answering their questions and building a story with them in which everyone finds their place.

Through his words, Gabriel reminds us that someone who has recovered from cancer can also pass on to their child much more than just their medical history: confidence, love, courage, a sense of direction and a remarkable ability to keep moving forward despite the difficulties.

Laure Mendelsohn, Psychologist/Child and Adolescent Psychiatry, Women and Children/Perinatal Care, University of Caen Normandy, France