Who we are I’m Emma and I founded and now run The Osborne Trust, the only national charity that focuses all of our support on the children of a parent with cancer. The Trust was launched in 2014 after my own cancer diagnosis aged 36 years with …
As a Breast CNS Team in a large NHS Trust, we see breast cancer patients who we support from screening, diagnosis, treatment and beyond. Our role has changed over the years and non-more so than in the last twelve months since the coronavirus pandemic hit …
This guest blog is from Mary Huckle, in which she talks about how she told her 10-year-old twin girls and 14-year-old son she’s been diagnosed with cancer. She shares her tips for dealing with children of this age group.
7 Things to Consider When Telling Your Child You Have Breast Cancer
No one can dispute that parenting is the toughest job ever. As mums and dads, we do our utmost best to grow our offspring. Like tending a fragile plant, we nurture and protect. We want nothing more but for our children to be happy, healthy, and safe. So what kind of a mother would want to intentionally hurt her child?
Immediately after being diagnosed with breast cancer, I had visions of my children and thoughts of dying. Then, it hit me again; the prospect of actually telling them my awful news. Why would I even contemplate breaking it to them? How could I tell my then impressionable 14-year-old son and my innocent 10-year-old daughters that I might soon be leaving them forever or that their mum was going to be very unwell at the least? Every time I thought about it, the lump in my throat would swell. The feelings and emotions overwhelmed me and to be honest, I felt confused. What would be the best thing to do? What would someone in my position do? There was so much to consider.
1. The Feelings of Guilt and Betrayal
Telling them would be like an act of betrayal. I was supposed to be the one they could trust, the person they could always rely on and the one to make them feel loved and looked after, yet here I was, feeling guilt ridden because telling them would surely crush them. My maternal instincts were saying I’d deny them their childhood happiness. I was convinced it would mess with their minds and cause them anxiety.
2. Your Fears Become Their Fears
I was challenged by my own fears and concerns so how could I possibly allay my children’s fears if they were to see how scared and vulnerable I was? Surely, if they saw me upset and worried, they would feel the same way. The thought of dying and leaving them was too painful to bear but I couldn’t let them see that by getting emotional in front of them. How could I remain composed relaying this message? At the end of the day, I just wasn’t brave enough; my tears would certainly betray me.
3. The Deception Can Be Exhausting
If you choose to hide your cancer diagnosis from your children, are you lying to them? Yes, I believe I did lie, by attempting to hide all the tell-tale signs and goings on. In the weeks ensuing a cancer diagnosis, there are lots of hospital appointments to attend, probable surgery to undergo and various treatments to be had and believe me, it’s tiring ‘not telling the truth’. The game will inevitably start to wear thin and it will get harder still as the plot thickens and the process unravels. Imagine, losing your hair through chemotherapy and your child catches sight of you bald, not wearing your wig? How would you explain that one? By the time I had my chemo, all the children knew but in the very early days, I would keep disappearing into my bedroom and cry privately so they didn’t see or hear me. I think I might have cried less had the children known the real situation.
4. Your Child’s Age Will Determine What, How and When You Tell Them
When I was diagnosed in August 2007, Robert, our eldest had just turned 14 and our twin daughters were 10. After much deliberation, myself and my husband decided we should at least tell Robert. We deemed him old enough to understand, and I know this might sound silly, but because he was a boy, we thought he’d be less affected than his younger sisters. Weirdly enough, we felt stronger and more composed in our approach when breaking the news to him. However, that didn’t stop us having a cry. We talked, we held each other and then we gave him reassurance. Afterwards, as expected, he didn’t really talk about it very much or ask too many questions but he would give me lots of hugs and I knew that was his way of awkwardly caring. I was happy with that, but I still made sure that going forward I kept him informed and he seemed OK with that too.
When, on the other hand, we considered telling the girls, it was an entirely different matter. The twins have always been extremely attached to me and their protective ways were too strong to ignore. I would go into complete meltdown just at the thought because I knew it would really affect them and that we’d probably all end up in a slobbering, tearful mess before I’d even got the word ‘cancer’ out. I kept thinking about their inquisitive nature and how they’d probably have endless probing questions. I just knew in my heart that this news would play on their minds, so I went with my gut instinct and resolved not to tell them straight away.
5. Is Honesty the Best Policy?
When I ask the twins now how they felt then, they tell me that one of the worst things was the missing me, the wondering why I was away from home so much and not understanding why I had so many random hospital appointments. They were worried but obviously incredibly determined to find out what was going on. It would be 10 years later, that they would confess to looking at my emails and discovering my secret. I blame their mischievous twin nature! Joking aside, knowing what I know now, I wish I’d been honest with them. I realise that in trying to protect them and myself, I did them an injustice because I still caused them anxiety. If I’d been completely upfront right from the beginning, all the unanswered questions my children had would have been easier to answer. When they eventually confronted me, above all, I was sorry for causing them worry and I felt compelled to apologise.
6. It’s Not a Cop Out if You’d Rather Have Someone Else Tell Your Child
It may seem like you’re shirking your responsibility but an alternative to not telling your children would be to ask someone else to break the news instead. At the time, it didn’t really occur to me that I could have asked someone to break the news on my behalf but I wish that I had considered that as an option.
7. Telling Your Child About a Recurrence
I had no family history of breast cancer and there were certainly no risk factors where my health was concerned. In fact, being a personal trainer made me particularly healthy so I could never understand the reason for my diagnosis. The only consolation might be that my fitness did keep me in good stead and I passed the 5-year mark unscathed. Seven years passed and I was living my life with gratitude. I was convinced that my breast cancer diagnosis was just a glitch.
My optimism was abruptly interrupted, however, when in July 2014, I was once more confronted with the dreaded words. A PET scan had revealed that the lump behind my collarbone was in fact cancerous and that there was another infected lymph node in my chest wall. The notion of going through more surgeries and treatments filled me with blinding panic and then the familiar morbid thoughts began taunting me. Worse still was the thought of having to tell my children that the cancer had come back.
It certainly wasn’t any easier this time. A secondary diagnosis is incurable, and trying to explain that to anyone can be tricky, let alone your own children. The rollercoaster of ups and downs was set in motion and the feelings of hurting my son and daughters were just as strong, even though they were older and more mature in their thinking. There was something quite different though. This time, I would tell them straight away. Once I’d got all the facts straight in my mind, I felt confident that I could talk to them without breaking down. Yes, the cancer had spread and sharing the news would be upsetting but the previous 7 years of having lived with breast cancer had obviously taught me more than I realised. It had taught me and still teaches me to be stronger and resolute. The more you’re forced to think about your mortality, the less traumatic and upsetting the scenario becomes.
At the end of the day, whether you tell your children or not, is a personal choice and there is no wrong or right answer but whatever you decide to do, here’s a quick check list:
- Make sure you tell your breast care nurse or consultant that you have children so they can give you lots of information and guidance from the outset.
- Children are naturally very curious as well as perceptive. Even at a very young age they can sense that something serious is happening and can pick up vibes of a life changing event affecting the entire family.
- Remember that a partner, a family member, or a friend could support you with breaking the news of your cancer diagnosis. Have a discussion beforehand to ensure you are clear about the facts and that you agree on the details to be passed on to your children.
- Keep lines of communication open and give your children age appropriate information. They will react and act differently depending on their age. The word ‘cancer’ can be terrifying for young imaginative minds but it’s always better to be honest and factual.
- Expect lots of questions; give them the opportunity to ask them and your time to answer them. Some of these questions may be upsetting or uncomfortable, so be prepared.
- It’s important to tell your children that they are loved and that the cancer has nothing to do with them; they might think it’s their fault or they’ve upset you and in some way caused it. The reassurance that you care deeply for them and that they will always be looked after will help to allay their fears.
- Inform your child’s teachers so they are aware of the circumstances and will ensure that there’s support at school, should your child need it. If you feel, however, that your child needs specialist support, you can explore the counselling route. The effects of a parent’s cancer diagnosis can be traumatic and far reaching for a child, especially if they are susceptible to already feeling anxious.
Motherhood is hard enough without a cancer diagnosis! In a time of pandemic, being confined to our homes, home schooling and wearing countless hats of not only parent, but teacher, entertainer, friend, sibling, chef and cleaner, having a ten-year-old pre tween daughter and going through …
This is a guest blog from the Fruitfly Collective about how to talk to and support your children throughout your cancer diagnosis.
One of the reasons why it so hard to tell your child that you have cancer is the primal feeling of wanting to protect them from any harm, worry or concern.
The trouble is that children easily pick up on things, and have amazing imaginations. Even if you think you’re hiding your grief, pain, and emotions supremely well – they know something is up. Not telling them, or giving them partial or incorrect information can be more worrying than the truth.
So how to start?
Here are some tips to help start talking:
- Rehearse what you will say out loud in front of a mirror. It can be frightening to say ‘I have cancer’ for the first time.
- Choose a calm space and a quiet time of day – not before your child’s bedtime if possible.
- Don’t use misleading ideas like ‘I have a bug’ or confusing terms like ‘I have the big C’.
- Use the jigsaw approach if you’re not ready to tell them everything. One small piece at a time.
- If you cry, it shows them that it’s OK to show emotions.
- Give your children time to take the information in – silences can show they are processing what you have said.
- Ask if they have any particular worries. It’s perfectly fine to say you don’t know some of the answers.
- It can be helpful to have some resources to hand. Having something to look at and fiddle with can make you feel more in control (recommend the free app ‘Kids Guide To Cancer’)
It doesn’t matter how old your child is, the key aims are to reassure them, show them love and security, and to open a safe space for them to ask questions.
What to tell them?
Well, this will depend on the child’s age and development.
Most young children need to simply hear that cancer is a sickness, that you are trying to get better with the help of the doctors. Don’t be surprised if they want to go and play and react like nothing has happened.
For older children you could say something simple like:
“I have an illness called cancer. It means some lumps are growing inside my body that shouldn’t be there. I have many doctors and nurses who are helping me”. They are likely to ask lots of questions, so perhaps prepare yourself with some answers.
A few things to note.
Children can often believe they have caused the cancer by behaving badly or thinking bad thoughts, and they might think cancer is contagious. So tell them, you can’t catch cancer, and nothing they did, thought or said caused the cancer.
Also, keep in mind that nearly every child will either ask or think the question ‘Are you going to die?’. This is the worst question ever but it needs to be addressed. Try not to brush it off, but instead say something like ‘Nothing is for certain yet’. It shows you are not shutting them down and makes them feel more secure.
Teenagers like the truth delivered in a non-patronising way. Often sitting next to them to talk rather than opposite them works better. It’s all about giving them space, and not being too confrontational and staring into their eyes.
Look for any changes in your child’s behaviour as this might be a clue to how they are feeling.
For example, they may return to younger behaviours such as thumb sucking or wetting the bed, or suddenly become afraid of something they were not previously before. Some children display more anger, some complain of headaches/stomach aches and some children will have no reaction which can be hurtful but it’s their way of processing it. All these responses are normal.
How to support them?
What can you do to make this easier, especially when your life is upside down too? Basically all the support revolves around giving them security with boundaries, facilitating good communication, and showing them love. Ask for help from family, friends, and your child’s school.
- Tell them of any changes in their routine. Use calendars and daily time tables so they are not surprised by sudden changes, and feel in control of their lives.
- Help them identify their feelings, e.g. by reading stories or drawing them out.
- Include them in the family decisions, and give them small appropriate tasks, e.g. make them chief toilet roll changer.
- Create a worry box. Take any box and tell your child they can either draw or write their worries on paper and park them in the box. You can come to an agreement where you both look at the worries at the end of the day or week, or get their consent to simply have a look from time to time.
- Encourage them to fun & organise special time together – e.g. picnic on the bedroom floor or a film – small things not Chessington World of Adventures.
- Keep communicating – try different methods to see what works for your family, e.g. Post it notes around the house; Weekly family discussions around the table; Going to favourite café to talk once a week; Whatsapp messaging; Talking in the car.
Final four lessons…
Finally, it often helps parents with their fears when I share these four lessons I learnt from my experience of teaching over 1000 primary school children about cancer.
1) Children are genuinely curious about cancer – even those who are recently affected. They have the capacity to understand if explanations are age appropriate.
2) Children have an amazing ability to deal with the truth that adults often underestimate, and this is largely because they don’t have the same fears as adults.
3) Children enjoy the opportunity to speak about cancer – especially those affected.
4) Every child has some degree of awareness of cancer whether it is news from the media, public health or charity campaigns, or shops on the high street. Most of what they believe is incorrect.
For resources to help with these difficult conversations, go to www.fruitflycollective.com
Caroline Leek is the founder and director of Fruit Fly Collective, a multi award winning not for profit organisation that focuses on improving the public’s understanding of cancer as well as supporting individuals and their families affected by cancer.
Please note that I, as Ticking Off Breast Cancer, do not accept responsibility for the content of the guest blogs. The information and content provided in all guest blogs is intended for information and educational purposes only and is not intended to substitute for professional medical advice. Please seek professional advice or speak to your medical team if you have any questions about the issues raised in this guest blog.
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