It’s the shock of the diagnosis. It’s the unknowns. It’s the instant shift of priorities. It’s the tiny, unavoidable practicalities. It’s the kids. It’s a LOT about the kids! It’s the fear of losing someone who you have wrapped your life around. It’s facing mortality. It’s feeling so out of control.
Last year my best friend and husband was diagnosed with bowel cancer. He was not alone. Over 78000 males and 66 000 females received a diagnosis of cancer in 2019. That’s a lot of people!!! I am very mindful that each of these people have families and friends whose lives are also greatly impacted. The reach is significant.
I’ve received a lot of emails from parents asking how we practically managed as a family. I held off writing this blog in order to allow some measure of hindsight to kick in. However, with yet another email coming in yesterday, I decided to share some of my thoughts in the hope of supporting other’s journeys.
So, how did we manage?
The best way we could, which wasn’t perfectly.
The first thing we had to do was come to terms with was what we couldn’t manage. Cancer has a mind of its own. We couldn’t manage, control or change the illness itself. We couldn’t manage the time it took to get scans and results back from hospitals, or see specialists. The only thing we could manage was our response, and very specifically our intense feelings of anxiety.
During any crisis, we might like to think we are in control, but the truth is that we are no longer in the driver’s seat of our lives. Our brain is overtaken by strong survival instincts. These instincts have been gifted to us as humans and are designed to protect us. They instinctively shut down anything deemed unnecessary and give us laser-focus. Wonderfully, they supercharge us with chemicals to help us get through the challenges before us.
Anxiety is a completely natural and normal response to the news of cancer. We can’t successfully fight it. We can’t avoid it. The only way through a difficult time is to surrender to it. The adrenalin rushes, the sleepless nights, the emotional outbursts, the forward thinking. There are hundreds of expressions of fight and flight, and each one is a sign of our humanity.
But here’s where it gets messy.
Anxiety impacts every person uniquely.
When every family member is supercharged at the same time, you have a lot of intense, competing needs. I noticed that my young adult children wanted (actually needed) more control of their individual choices than they normally did. They didn’t want me or other family members making any decisions for them – not what to say or do or how to feel.
As a parent, the most important thing I could do was respect each of my children’s way of coping, without shaming or demanding they offer more. I had to encourage them to manage themselves in a way that worked for them.
Stress + (Something) = Relief
Each one of us had a default response to stress which brought us a measure of control and calm.
What worked for me? I needed to keep my home in order. As long as the washing was done and the dinner was cooked, I felt like I was doing okay. Work is my safest and most confident place. I also put on a few kilos, so food obviously helped too! (Hahah)
What worked for my youngest son? He spent a lot of time with his friends. He stayed up all night most nights my husband was rushed to hospital or was in surgery. He kept his phone by his side. He’s a feeler and has to be in the moment, wanting to be informed and updated as things progressed.
What worked for my eldest son? He stayed logical and highly practical. He researched the internet for medical insights. He asked questions. He was a great source of practical information. “Tell me what to do and I’ll do it,” is what he said to me.
Stay on Course
One thing my husband and I decided (and kept communicating to my children) was, “You boys have lives which need to go on. Mum and I will look after each other. We need you to look after yourself, your careers and your commitments. Each one of us has to carry our own load, while still working together as a team.”
One particular example of this was with my eldest son who is at university studying engineering. For him, the timing was horrible. He was right in the middle of his end-of -semester exams when my husband had his first operation. He had three assignments due the night my husband was rushed to hospital with post operation complications. He was also preparing for internship interviews while my husband was recovering, and the home-front was anything but stable.
To a certain degree he had to switch off and stay focussed to get through it. He wasn’t detached, just focussed. That meant that I only rang him if things escalated, and he chose when he turned his phone off and how often he visited the hospital. Sometimes I asked him if he wanted updates during the night, to which he responded, “Call me in the morning. I need to sleep.” And then he did (or did the best he could).
Surrender to Discomfort
During my years of teaching I noticed how younger children managed grief. In so many ways, they continued to experience normal life. They still eat, sleep, play, learn and interact with people. They, however, also have intense moments of anger or sadness that can hit at the most unexpected moments, and surface in unexpected ways.
I experienced grief similarly. It wasn’t there all the time, but when it arrived it was overwhelming. I remember having a great day at work, and stopping in at the grocery store. Suddenly (and very unexpectedly) I burst into tears. Not little tears. Big, massive, loud tears. I don’t know what triggered it. Maybe it was because I was alone and it was quiet, and I could hear that my heart was beating faster than it normally did. It came in like a tidal wave, and then left.
Those moments, when anger turned into sadness, were moments of great surrender for me. When I accepted that there are things I can’t change, and that those things can be extremely painful, I usually stopped fighting (and organising and cleaning and cooking) and cried. Those tears encouraged me to trust the big picture, not a specific outcome. Trust, trust, trust regardless of whether I was hearing the news I wanted to hear, or not. Trust that “even if” the absolute worst happened; I would eventually be okay.
The significant loss and grief attached to illness is just so wrong. My sons are young adults, who are fully aware and able to access Google for information. There was nothing we could hide or shelter them from. We talked openly, often. We talked about death quite a bit. We talked about other people’s losses and stories. We talked about our needs and feelings.
We as parents answered all the questions they asked. If we didn’t know the answer, we found out. However, I tried not to offer them more information than they wanted or were able to process. When it comes to younger children, I suggest only talking to them about what they need to know at that time, based on the questions they asked and their engagement with the specifics.
Take Care of Yourself
“Take care of yourself too,” people would often say to me. HAHAHA!!!! To be honest that advice really grated on me. “Like how????!” I would think. But we must try, because our energy and time are limited, and we have to last for the long haul. Self-care is the only way that our prefrontal cortex can continue to solve problems.
When a stressful time lasts for more than a few weeks, it starts to take its toll on your physical strength. You start to need to switch the supercharger off for periods at a time. I’m not sure I did this very well. Yet, I’m not sure I could have done any better. It all sounds a lot better and easier said than done.
There were a few days when we didn’t go to the hospital because I was exhausted. The boys or extended family went instead. Some days (most days) I asked for help from my parents. Most of the time I just got on with what was in front of me. Moment by moment. Day by day. I just did my best. When my body stopped, I had to stop with it. As a family we eventually got into a new rhythm, which included new coping strategies and ways of responding to what was happening.
Hitting Our Capacity
As parents, our children are always on our mind, but especially during challenging times. No matter how old or young they are, they each have limits. Each one of them has a capacity which is unique to them. What do we do if we see signs of them being pushed beyond their capacity?
Our job as the big, safe adult is to firstly NOTICE. Our children rely on us to plug into how they are feeling. They may not have the language to tell us. They may not want to burden us. They may not even really recognise it themselves. We are more likely to see their pain manifest as an outburst of selfishness, or defiance. Out of character, larger than life behaviour is usually a sign that our children aren’t coping well, and need a whole lot of love.
At the time I felt weak, vulnerable and really afraid. But looking back, I can see my strength more clearly. I survived nights of sleeplessness. I survived some pretty scary moments when I wondered if the husband I knew would return. I got through days of work that I wasn’t sure I could handle. I had difficult conversations and faced fears. I even learnt how to do the banking! That’s not easy stuff.
We had a Happy Ending
The cancer was successfully removed in an operation, and besides some post operation complications he is recovering well. We are fortunate to have an amazing medical team whose decisiveness was a life saver. Yesterday he went for some follow up scans to confirm the cancer is fully removed. So far so good!
I am very conscious that there are so many whose story has ended differently to ours. For those many families who are facing illness, or have lost to illness, I pray that superhuman strength surrounds and guides you. Life is fragile. It’s precious. And I wish to wrap every ounce of support around you.
Lastly, to those who live with full strength in your body – enjoy every moment and live to the full.
RECOMMENDED READING: For more, check out Michelle’s book “Everyday Resilience: Helping Kids Handle Friendship Drama, Academic Pressure and the Self-doubt of Growing Up”.