Editorial written for Medical Journal Onco’zine – The International Oncology Network: Naturally, the focus in a cancer story is the person with the cancer, because we need the patient to fight, get better, and live. It is the patient we all worry about, but what about their families? Standing helpless at the sideline?
“Life without a mother – how would that be? A year in which we would all define what love really meant, how tight our family really was, and soon after… how easily everything could fall apart. It was going to be the year I had to start taking care of myself, and grow into maturity – even though I may not have had reached the appropriate age yet. I would never really be a child again. I could not be a child anymore; those days were over. I’d have toys to play with, but my mind was obsessed with learning about cancer and observing my family. They may not have known it at the time, but I listened to all their conversations that were within reach. I tried to understand everything, even though it was not discussed with me at all. It was my research preparing me for the most emotional and heartbreaking day of my life. After this year – everything was going to be different. I could not lose her, but our darkest days were coming. All I could do was be strong – and love every moment I had with her (13 Diamonds, 2018).”
When it comes to cancer people often discuss the predicaments of the patient, while family members fall back into the background as their loved-one is the center of attention. Naturally, the focus in a cancer story is the person with the cancer, because we need the patient to fight, get better, and live. It is the patient we all worry about, but what about their families? Standing helpless at the sideline? Watching this disease taking over the life of someone they deeply care about? Or a child that knows this horrific illness will take away his or her parent eventually? From my own experience I can elaborate that children with a parent who has or had cancer are pitied, but what do we really do to help them understand? What do we do to support them?
In a study about “prevalence and predictors of emotional and behavioral functioning of children where a parent has cancer,” American Cancer Society concluded that “The results indicate the need for a family-oriented approach to psycho-social support of cancer patients (Cancer, 2009). When cancer strikes, it does not only attack the patient, it often effects an entire family. How incredible would it be if we can start a global conversation about the importance of family when they have a cancer patient in their midst? Nobody should have to go through a cancer roller coaster on their own, let us find hope in honesty, sharing stories and strength.
Three pillars of psycho-social support were conducted that I believe can make a difference in a family when a child’s parent has cancer, but it does not stop there. The family, and in this specific case the children, are the ones that are left behind when cancer takes a life. Long after the patient’s story ends, their children’s will continue, and it is to hope that they have found strength or will find strength in the following three guidelines.
…I will never remember the last words my mother spoke to me before she passed away after she was diagnosed with brain cancer…. but for someone else it might not be too late…
It might not be too late for honesty
I will never remember the last words my mother spoke to me before she passed away after brain cancer was diagnosed, but for someone else it might not be too late. Speaking from a twelve-year-old’s perspective of losing a parent to cancer I wished my family would have been more honest at the time. Not sure if this is fair, because I understand lots of people would want to protect a child from the pain of realizing what is really going on.
This may be understandable; in my opinion I would prefer an open line of communication. Initiating honesty could be very difficult, but over time, would you not prefer to have known what was going on? Honesty creates more time to say the unsaid. If you were the child, would you not like the chance of saying “I love you” once more and hear those words in return?
According to a study about how children cope when one of their parent’s has been diagnosed with cancer, results show that “open communication within the family may lead to more effective coping and a positive experience for children whose parents have been diagnosed with advanced cancer (Psycho-Oncology, 2009).” Is it not crucial to try to create an effective way of coping and a lasting positive experience even if it is regarding illness and possibly death? By talking with family members the burden is shared and the love is spread. If we can take away a child’s confusion and be honest, however hard that may be, could we create time for lasting memories? Memories a child that is in the dark might never get the chance to create, because one day – it could be too late?
Let us be alone – together
Recently, I started the initiative “Start sharing your story” to help people find courage to say the words – that are so hard to say – out loud. Under the slogan “If you do feel lonely – let us be alone together” I believe it is important to help others understand and listen what we can learn from others. We do not have to carry the weight of the world on our one, even though it might feel that way sometimes.
By sharing stories people can share their burden and hopefully find strength. Where the previous pillar was focused on honest conversation within a family this topic does not have to be. Reaching out to strangers who go through or have been through something similar could possibly relieve us from feeling lonely as well.
Sharing stories is nothing new, but it has been proven to have effective potential. Scandinavian scholars, for example, wrote a paper on how effects of storytelling online in a breast cancer support groups could counteract social isolation (Psycho-Oncology, 2005). They suggest that “internet support groups have important potential for the rehabilitation of cancer patients.” This paper mainly focuses on support for the patient, but the women in the support group felt empowered by sharing stories. Could this also be the case for families? Families that are facing the threats of cancer together or perhaps a child that has lost a parent to cancer? Or other children with a similar story?
There are more children out there who lost a parent as well. Whether it was to cancer or not, when my paths cross with one of them there is an immediate connection. The moment you are facing someone who has been through something similar and your eyes lock, you can feel it and I think they can feel it too. You are in this together.
Do not be a victim of your circumstances
It is very easy to blame everything on the world, on others, on yourself even, but will it lead to the best quality of life? When we go through a trauma, like losing a parent as a child, there are a few things we can do: a) feel sorry for ourselves, b) blame everything that goes wrong on that one life event or c) move on and try to live the best life possible.
When I say move on, I do not mean ‘forget,’ but think about it, do we want to be the person that forever regrets how something bad has happened? The person who cannot seem to turn life around out of sadness? Or do we want to make the person we lost – the person we loved – proud by living up to our dreams and living up to the dreams they had for us? While honoring their memories? Feeling like you are a victim of your circumstances can lead to a negative spiral of life events, while who knows all the good that can appear on your path when you try to be the best version of yourself.
Tough questions have been asked and it is up to anyone in a similar predicament to decide how to execute guidelines. Something that works for one, may not be be for another, but if we have the strength to share our stories we can learn from each other without feeling like we are on our own, and we can be strong.
This article was written for The International Oncology Network – Published by Onco’Zine