5 work-life lessons my son’s cancer taught me
The diagnosis comes as a powerful shock, like a brutal blow to your head or what feels like a bus running you over. We learned this the hard way when doctors found a cancerous tumour in our son’s brain just days before he turned two.
This was the beginning of a whole new way of life, of functioning, and of working.
My husband expressed it well by using the metaphor of an earthquake: disaster has struck, swept you off your feet. But you need to rebuild, and quickly, despite circumstances and the risk of subsequent aftershocks.
Except in our case, it was primarily a battle of the mind and the heart, one where you need to get back in the ring, as lucid and pragmatic as possible.
Your new life goal: Successful treatment and remission, obviously. Now what?
Facing your worst nightmare, discovering a new world.
Paediatric oncology is at best an uncomfortable idea, and for most of us, an unfathomable nightmare. Little bald children are asked to become poster children for fundraising campaigns and pop up on our social media feeds, filling us with gratitude and humility for the life we have.
We were suddenly the people in these videos but it felt like a scary, unknown and traumatizing place to be in. You need to know what his and your new life will look like, and take whatever comes your way the best way you can.
In reality, cancer is an umbrella term for so many different types of affliction, with very different odds. Once you’re on the other side of the mirror, you come to realize how mundane this disease has become.
Cancer is no longer a systematic death sentence. Don’t get me wrong, it’s still a cruel, scary lottery. But progress in medical research and care has opened new perspectives for some patients.
On your way to work, on any given day, chances are you will have brushed shoulders with over a dozen people either fighting cancer as a caregiver or directly as a patient.
If they’re lucky, they might also be on their way to work, despite having spent their night on a hospital stretcher or sitting through a chemo session.
Here, in France, organizations like Cancer@Work (in French) are helping cancer patients to be recognized as valuable, competent assets to any company.
This is needed more than ever, since more and more people are at risk for cancer, and treatments are improving day to day lives and potential outcomes.
In response to the “Fighting Cancer as a Linked Skill” campaign, I felt compelled to explain how my son’s oncology journey has helped me work better, smarter and (hopefully) helped me become a more accomplished human being.
1. Your universe just shrank, stick to useful and meaningful interaction.
Initial diagnosis can be a truly brutal experience, which can have a tremendous isolating effect. Forget growth percentiles — my son suddenly fell into the 0.001%, who can connect with that?
You will lose friends, some colleagues will avoid you, out of the sheer fear such terrible news can inspire, simply the embarrassment of not finding the right words. But others, sometimes unexpected, will come out with words and actions that will keep you up and running on the toughest days.
For chemo or radiation to take place, you need the best possible vitals and blood work. That means a common cold can throw everything off, and dangerously.
No more playdates, birthday parties, grocery shopping, Ikea trips, using public transit… You need to inform your friends, acquaintances, colleagues.
No more handshaking or kissing at work, there isn’t much time for lunch either — you end up eating in front of your computer, because you need to run over to the hospital, in this crazy sprint relay where you and your partner juggle hospital stays and office work.
Your priority becomes staying onboard with critical projects at work, focusing on who’s the most relevant person for that project, and what’s the most important thing she or he needs to know to make progress.
2. Cancer is the new normal. Work compromise into your life.
We had to take our son out of daycare and find a babysitter was comfortable taking care of a 2-year-old with a central venous line in his chest and a catheter in his head.
The agency we hired found us just one candidate. The child you’ve been showering with attention and love to compensate for chemo and operations will have to be left with an 18-year-old stranger while you rush to work.
Work wise, you have to prioritize. “A” type personalities? Any career goals? Annual performance interview ? Salary negotiations in progress ? 5-year life plan?
All out the window.
Your life gravitates around a treatment calendar, which, at any time can change if there’s a problem with the latest blood test, or if he catches a cold.
My husband and I have juggled meetings and deadlines, setting up a makeshift desk in our son’s hospital bathroom, occasionally working overnight if needed.
In between treatments, you can get a call from the hospital asking you to rush your child in for an emergency blood transfusion. Watching for fever or signs of flu becomes a constant obsession. You can be writing an e-mail, leading a meeting yet you need to leave his latest T-cell count or temperature in the back of your mind and focus on what’s happening right now.
3. Welcome to the jungle — learn fast and facilitate
You are your child’s first advocate or line of defence. Hospital systems are complex, staff are short of time and resources. You need to observe and understand this new environment.
The unit that cared for our son was fantastic, he actually has fond memories of staying there, and we ourselves bonded with a lot of the nurses. But you also need to know how the hospital unit works, along with its limitations, for you might have to be the one to call out a situation if your child is at risk.
Equally important, you need to establish good working relations with nurses and doctors, show them you’re trustworthy, and in turn, learn to trust. Trust is fundamental.
You might have to jump in and assist with care, advise them which needle size is best, inform a nurse on how his night was, ask the right questions when the doctors walk in, with little time available. These interactions have to be productive and as objective as possible.
4. Learn patience, optimism and persistence.
Sometimes you’ll be the priority, other days you’ll be the last one to be seen. You’ll have to manage your impatience or your child’s anxiety, wait hours, days or weeks for critical lab results.
For instance, impatience is probably my worst enemy, as it feeds my frustration and can easily snowball into anger. We will have to sit tight and wait 5 years before our son can be considered completely free of cancer, and no longer simply in remission.
Progress can be microscopic or come in violent waves. Your child might be bouncing off the walls, spiked on steroids one day, and then the next he won’t eat a single bite and just watch TV all day.
None of this is the result of a parenting choice, nor is it your fault, but it can make you feel helpless. Yet you need to be able to take a step back from the situation, and assess what you can really do to improve his day or mood.
5. Sensible leadership: learn when to let go, and when to call out a situation
Early in the process, as we were in the middle of our son’s brain surgeries, I made a conscious decision to shift all this negative, depressed thinking towards determination and feistiness.
I remember one night, sitting at my hotel room desk, and sitting down to write some sort of personal manifesto. Looking back, that was a turning point where I decided that my son’s brain cancer was no longer a fatality, but a family fight. That night, his cancer went from earth-shattering news to a manageable project.
Chemo treatments taught me to take a step back from my motherly instinct that would take the blame for a runny nose or a bad day. Our son was infused with powerful medication, occasionally rendering the situation out of my control. So you must learn to relinquish whatever control or power you think you might have and look for where or how you can actually be useful.
As I mentioned earlier, hospitals can be a messy place — after all, it’s where miracles and devastation meet, and where budgets and people get cut (pun intended).
Hospital staff do a terrific, sometimes grueling job, which can make them prone to mistakes. As a parent, you know your child best, and staff will seek your input, so you need to step up and take action within your own scope of power.
By the end of his treatment, I could see if a nurse had trouble with his central line, and when to ask for help from senior staff. You should also learn to take initiatives, whenever you know you can lessen their load while helping your child.
These kinds of win-wins cannot happen unless you’ve built trust with staff and learned to communicate to get people to collaborate, not just for the sake of being heard.
And now what?
A year later, our son is now in remission, blowing birthday candles with family and friends. We are learning to adjust “back” into normal life, but always vigilant, with regular checkups to remind us how life can collapse again.
But how are we different from anybody else? Disaster can strike tomorrow for any of us, and if there’s one consolation I get from this past year, it is that I feel that my son’s cancer has taught me skills I can call upon if needed.
Now I feel compelled to share my story, with hopes it will help other cancer fighters to recognize and bring forward their own newly acquired skills.
