Our Children

 

“Some of us thought our children appeared to be coping well on the surface, perhaps keeping their feelings hidden, others might express their feelings through challenging behaviour”

 

    Whether our child is a toddler, young, in their teens or grown-up, we reflected that telling our child or children we had breast cancer was perhaps the hardest thing we have ever had to do.  There is guidance a-plenty, both scientific and anecdotal, but at the end of the day each of us makes our own agonising choices about how much, or little, to tell our children, and how much, or little, to involve them in our treatment.

 

    It was clear that deciding what, when and how to talk to our children about breast cancer felt like an enormous task. Whatever our diagnosis, we had in common our desire to try to do the best for our children. Above all, we want to protect them from the fear and uncertainty that cancer has ushered into their lives. If we can, we want to retain as much normality as possible within family life.

 

    Mothers with secondary breast cancer face the added challenge of how much to share about the nature of secondary breast cancer, which can be treated and managed, sometimes for many years, but can’t be cured and generally involves ongoing treatment throughout their lifetime. All while dealing with their own shock, fear and, in many instances, anticipatory loss. Making memories and sharing as much joyful time as possible becomes of paramount importance.

 

    What we decide to tell our children depends on their age, personality as well as our own values, beliefs and family dynamics. Many women choose to tell their children as much as possible, believing that complete openness and honesty is the healthiest way to help them cope. Some had actively involved their children in their treatment, taking them to appointments to talk to the oncologist and to be a part of treatment.

 

    We learned that we can over or underestimate our children and we may be surprised at how they react. Some of us shared that our children had dealt with our diagnosis well, becoming involved in treatment. Others shared alarm and distress at witnessing their children's reactions - including distress, withdrawal or angry outbursts - as they try to grapple with their feelings and cope with the reality of a mother who has cancer.

 

    Some of us talked about the devastating impact of our own experiences as children, when illness and death was less talked about, and how we had lost our parents without any adults explaining what was happening. These early experiences shaped the way we approached telling our own children, bringing back painful memories as well as the chance to correct the past.

 

    Some of us decided that a young child doesn’t need to know, or, we offer a simple explanation which we can come back to as our child grows and develops. Older children can choose to do their own research which poses the dilemma of how much to tell them.

 

    Younger children can be remarkably resilient, but many may find themselves bewildered and unable to articulate their feelings when mummy is poorly and can’t do all the things she used to do. For some, a mum who loses her hair may be frightening; others appear to take it in their stride.

 

    Older children may be better at hiding their fears and this can be worrying for us, particularly if a child refuses to talk about it once they’ve learned about their mother’s diagnosis. They may also feel embarrassed by our hair loss and the reactions of peers can be an added pressure. 

 

    Naz told us that research shows that teenagers whose mothers are diagnosed with breast cancer often react with confusion and mixed feelings. They often feel torn between wanting to help and wanting their own lives. They may worry that they are more likely to get cancer now, or be afraid that they will lose their mother and wonder what will happen. A main finding, Naz shared, was a tendency to internalise feelings which can mean higher rates of depression and anxiety in teens with parents who have cancer compared to those with parents with ‘no cancer.’

 

    Feelings of helplessness can lead to avoidance in our teens, both of us and of the feelings. This was something that many of us could relate to, with teens (and younger adult children) showing little outward reaction. A teenager is old enough to understand on some level but may not be confident enough to ask questions and articulate their fears.

    Our discussion, which included women with primary and secondary breast cancer diagnoses, highlighted our huge worry and guilt about the impact of on our teenage children. It’s easy to blame ourselves and our illness for wayward teenage behaviour, and many of us felt we had let our children down.

 

    If we can, crying together can be a release, with many sharing that this had helped their children to dust themselves down and carry on. Many children do cope well and adult children can become a rock of support, but others pull away and withdraw. Many mothers reported trying to keep the worst of their pain away from their children once they’ve told them for fear of upsetting them or making them anxious.

 

    Some of us thought our children appeared to be coping well on the surface, perhaps keeping their feelings hidden. Others might express their feelings through challenging behaviour - either at home, or perhaps at school. Effects can be long-lasting, or ebb and flow, triggered by transitions, news items or bereavement. Many schools, we heard, offer support, some in the form of counselling, and some women found it helpful to let teachers know of their diagnosis.

 

    There is a selection of age-appropriate literature available to help us and many women used these materials to supplement their conversations. These publications also help us to communicate that we are not alone, that breast cancer is happening to lots of women and their families. Humour can be helpful at times too as can joining in fundraising. Asking close family friends, aunts and uncles to keep a special eye out for children and to be confidantes if they needed a shoulder or a listening ear can also be supportive.

 

    Guilt and depression are common emotions. We want to be careful not to pass this on to our children. We can feel it is somehow our fault that we got cancer and we are to blame for causing anxiety in our children and potentially leaving them too soon.

 

    It can also feel unbearable to contemplate our child's future without our presence and care. Some had wondered whether it would be better if cancer took us quickly, while our children are too young for it to register and without a long, drawn-out period of illness. But this, we realised, was the voice of our depression and overwhelm. We all want to see our children grow up, to guide, support and love them. We all want to see our children achieve major milestones.

 

    “They find it difficult to express their emotions, and the lack of professional support is unbelievable”

  

    If we feel that our children are really not coping, who can we turn to?  This is where things start to fall apart and extra support is patchy at best. We heard that some schools offer great emotional support for their students. Many do not and sadly, we heard, some make the situation worse. There are very few charities that offer extended support to families after a cancer diagnosis, but even if you are lucky enough to know of one, there will probably be a waiting list. Unfortunately, that’s not how mental health works. The need for support is often immediate and distressing for all involved and should be treated with the same urgency as, say, a broken leg.  But with mental health resources so thinly spread, what chance do we have of getting ourselves and our kids through the cancer journey relatively unscathed? If we have trouble adapting and grieve for our old lives, then how are our children supposed to navigate the same emotions on their own? While going through our own trauma we can only help them so much.  We all agreed that support for them should be proactive and automatically offered on a set pathway as part of our treatment plan. Even a moving-on group aimed at families would be a start. Cancer has a ripple effect on everyone in our lives and we need to strive for better support for all who need it. As adults, we know that many of our mental health struggles started in childhood, so how do we break that pattern for our next generation?