Breast cancer does not just affect a woman, it affects a family. So, managing a cancer journey starts with breaking the news. Prof Carol-Ann Benn explains how to do this.
In my family, we have an honesty rule. I use this same policy when telling women about breast cancer. I always encourage them to tell their children about the diagnosis.
In fact, I usually suggest they bring their children to meet me so I can explain it to them in my simple ‘blonde-speaking-breast-way’. The staff calls this a meet-and-greet session.
I always feel that parenting is such an important yet fragile dynamic. Children gain security from knowing and not guessing, and attempting to understand fears can make fears seem less like a scary movie.
Here are some of the questions I am asked and how I answer them:
1. What is cancer?
My answer is “it is a germ…a cell germ.” We get germs from outside our body that cause snots and colds (usually viruses); tonsillitis or sinusitis – may be caused by bacteria; ring worm, for example, is a fungus; and some illnesses are caused by parasites (yuck) but lots of us have had them.
So, like we get different outside germs, we can get different types of cancers. You can’t put all cancers in a basket together. It is important that kids and people understand this first concept.
Just because granny died, or aunty died of cancer doesn’t mean that the same thing is going to happen to mommy or daddy.
Not only are germs different but so are people; when each child gets a snot, cough or tummy bug – they all are sick differently. Not every ‘sick’ goes to hospital. Even in the same family, family members have different responses to ‘sick’ and to treatment.
In my house, I get yucky vomity when I take antibiotics (my kids call me the vomit comet). Caleb has weird dreams when he has fevers; Tia has allergic reactions to so many things (including her brothers); and Charl just seems to not have side effects to anything. This could be because he is so fit. Being fit helps with managing most ‘sicks’ and cancer treatment.
2. So, why is cancer bad?
Inside our bodies are cells. They are born; live; some divide and have babies; and some die.
Every now and again, a cell – like a naughty delinquent child – decides not to listen. A real rotter! It makes more bad cells, like a gang. They get together and break out of the home (the duct in which they start – in the example of breast cancer). They wander down the driveway and off down the street, where they disperse. A few hang round at the bottom of the driveway and get caught by the security as they are trying to leave (the security glands, or lymph nodes, are the body’s policemen).
The problem is with the ones that run off, down the street (the blood stream). They go and make homes in different towns (like the liver, lung and brain), or hide in the forests (such as the bones). They go to sleep there and try to wake up at some stage, like terrorists. Therefore, it is important to have special security forces that send out SWAT teams (cancer drugs) to stop the baddies.
3. Can we treat cancer?
Absolutely! Once we work out what cell baddie the cancer is, we can treat it. Just like there are different baddies in the movies small and big kids watch, or are supposed to be watching (age restrictions are there for a reason). We can find the right treatment.
Most cancers require some form of medical treatment, which may be in a drip, or a tablet. Sometimes the treatment can make you tired, or vomit, or lose hair (though today sometimes this can be prevented).
It can be weird to think of moms and dads having medicine given to them in long thin pipes. A bit like a comic book scene. But giving medicines from a drip means that the medicine can access all the main highways and byways in the body and reach all the cities, villages and forests where cancer cells may be hiding. So, the medicine in the drip is a bit like secret SWAT teams (Navy SEALs; Avengers; Baby Einsteins; or any superhero from any movie).
Some cancers need to be cut out. This involves a hospital stay; an operation – just like when kids have an appendix or tonsils taken out. And, as with many operations, people can be sore and grumpy afterwards. They also may have drains in.
Hospitals also smelly funny. My daughter, Tia, does not like the smell of hospitals. She often tells me, “You smell funny.” I always hope that this is a different “You smell funny” to the one she comments on her brother’s B.O.
Hospitals are a bit like schools and have rules. So, if a mom or dad is in hospital, there are often times that kids can visit and times they can’t. Just like most moms and dads should not arrive to give a child a kiss halfway through the school day.
I did that once to Caleb before I caught a flight; it was important for me but he was most embarrassed and put out. So, if your mom or dad is in hospital, expect funny smells; funny people; just maybe feeling like you’ve landed in Loompaland.
Is my mommy/daddy going to die?
What a difficult question to answer! The answer is yes at some stage…but most likely not now.
My most stressful conversation with Caleb was about when you die. Who would look after him and who gets the house? The HOUSE??? OMG – is this his only concern? No, it was about his room and his Lego; and the fear he had after seeing children in a ‘Haunt Village’. His mishear of an orphanage.
A cancer diagnosis does not equal death. Everyone is going to die and all we have is every day. I explain that the risk of driving to Durban and having an accident is far more common than dying of cancer; actually, just living in South Africa is more dangerous.
Therefore, if you have small kids – it is important to explain death in terms of having some form of spiritual home or bed, irrespective of what your belief structure is. Think of this in terms of comfort systems: the breast; the dummy; the blanket; or the teddy bear (Tia, at 17, still travels with hers). Give them some form of security blanket; a part that is still there and a concept of a story.
Cancer does not equal immediate death, or death in many circumstances. However, it does mean that the concept of the fragility of life and the concept of death being a part of life is real and scary. For most of us, we go through life blissfully unaware.
So, having a mom and dad who is sick; in hospital; or on chemo is a scary reality of life’s fragility. It is like having a superhero not being able to save the day. Therefore, you need to explain that all superheroes have run ins with baddies. And, most recover with a few scrapes and bruises.
Teenagers and the talk
Explaining that a parent has a cancer – breast or other – is fraught with dealing with all the normal teenage issues. First, you need to deal with teenagers’ ‘know-it-all’. Oh boy, do they know a lot via the internet!
The internet is like a scary movie. A movie without PG.
Looking up cancer on the internet is like entering the scary forest. What is the first direction to run in? Survival. So, you turn down that scary track that may have been written about 15 years ago – based on substandard data. Most of us clinicians that regularly check these ‘facts’ know they are absolute fiction.
But to the layperson; adult or tech-savvy child – they look scarily accurate. The internet has length but no depth for any search around any topic, unless you are trained to interpret information in that field.
Can I get it?
The next is the blame game – “it is your fault!” Many a parent has heard that comment.
Now the concern of having a diagnosis of cancer is that often times the worry about a diagnosis is the fear that the same thing (cancer) could happen to them. Particularly with young girls, the concern of developing breast cancer is real. It is important to explain that most cancers are random genetic events, like reverse lottos. People – who have exercised, eaten properly and had no risk factors – can develop cancers. Therefore, the fact that your mom or dad has developed a cancer, does not mean that the same thing will happen to you.
The bottom line is communication. This involves listening, not just with ears but listening to body language; emotional cues and understanding each child is different. You know your kids better than anyone else.
Make sure structures are in place so that they are heard; ensure that teachers and schools know that there is a medical concern affecting the family. And, if worried about them, please seek help.
For the little ones – how we do it:
I have small toys to help explain about germs inside the body and outside; telling them that they too have had snotty noses from germs. So, we can get germs inside our bodies that need treatment.
I often sit down on the floor with the children making the consult less intimidating.
The use of goodie and baddie examples from kid’s movies is useful. Disney, Barbie and other examples often help ensuring open communication lines and allows for an understanding of what worries small children.
I encourage all little kids to draw me a picture, for my kiddie wall, and another picture later on.
I show them Barbie boobs, and tell them their mom’s boobs may be different. There was one young boy who wanted me to make his mom’s boobs purple and green. Lol!
What parents should do:
- Be encouraged to bring children to meet the doctors, and see the ward.
- You know your child, so be aware of subtle behaviour changes.
- Take note of needs; they too will feel vulnerable with change.
- Make the change in routine something positive not negative. If mom is in hospital, what a wonderful opportunity to have that take-out meal that is not usually allowed, or there can be an exciting sleep-over somewhere else.
- If mom is on chemo; show that dolls can also wear beanies; or look at the doll’s hair and show that it is fake.
- For every chemo; have a goodie bag for mom and child. It is not about expensive toys; a pet rock, a flower, making a card, or a picture to colour in.
- Let playgroups know so they can monitor your child.
- Accept help; don’t try and be supermom (we all are and are not).
- Do not be afraid to ask for counselling if you are worried about behaviour changes, such as new onset bed-wetting; not sleeping; or refusing to go to playgroup.
- All kids are different; you know yours the best; intuitive parenting, with help from your friendly, approachable medical team and support from your family and friends, will ensure that both you and your kids get through this time.
- Remember like you (the female rock) kids are surprisingly resilient.
MEET OUR EXPERT – Prof Carol-Ann Benn
Prof Carol-Ann Benn heads up breast cancer centres at Helen Joseph Hospital and Netcare Milpark Hospital. She lectures at Wits University and, in 2002, established the Breast Health Foundation.