We just found out about cancer – now to tell others.
When my 42-year-old husband, Marty, was diagnosed with stage 4 bowel cancer in December 2019, sharing the news was incredibly difficult.
Surprisingly, it was the reactions to our terrible news that was far more painful than I had anticipated.
The numb and raw pain of finding out you or your loved one has cancer is met with well-meaning words, that don’t quite land right, in fact, you feel worse.
Why? I began to categorise responses into three groups - hijacking, blame and misplaced positivity.
In those early weeks and months after Marty was diagnosed, I was told sad stories of loss and lots of gruesome cancer stories by others wishing to connect and show empathy.
I heard about an 81-year-old mother who had breast cancer and died a slow, horrible, painful death.
How another was heartbroken after recently breaking up with her boyfriend of three months.
Another had chronic kidney disease and knew 'exactly' what I was going through.
They were terrible, painful life stories of which I had deep empathy and sadness.
It was as though my tragic news was a magnet for others to open and share their painful stories in this newly allocated safe sad space. However, in my acute pain I wasn’t ready to support another, hear scary cancer stories and what they were describing was not the same as what I was going through.
Also, we were not talking about my pain at all, my story had been derailed, talking at length about the other person’s pain.
My pain had been hijacked.
Marty’s story was tragic.
A healthy, fit, young father, husband and police officer, diagnosed with advanced cancer.
Upon hearing our terrible news, others naturally wanted to identify how this occurred to ensure the same fate didn’t befall them or their loved ones.
As a result, I was asked relentless questions about the cause. For example, Were there early symptoms he missed? Did he ever eat processed foods? Milk causes cancer – did he drink milk? You’re a health professional, how did you miss this in your own family?
Everyone intended to understand how to prevent this tragedy for themselves and others.
However, all I heard was blame. Everyone blaming me for causing this cancer on the person I loved most. I felt I was being held personally responsible for this devastation and it was relentless.
Did you all eat red meat?
Red meat causes bowel cancer. I thought you, of all people, would have known that?
It feels like blame.
Marty’s prognosis was always palliative.
We hoped to gain an extra two years together with chemotherapy, but it was a fight we would never win.
Megan Devine* explains that we live in a world where we feel a responsibility to solve other people’s pain, but some pain cannot be fixed.
The usual platitudes, unsolicited advice and Hollywood one-liners are misplaced with cancer.
The ones I heard the most were 'make the most of it', 'stay positive', 'everything happens for a reason', 'there is a great life lesson in here for you'.
Once someone I didn’t know overheard my confidential conversation with a pharmacist and followed me out of the building to tell me that her husband had cancer years ago and he beat it. That I had to just stay positive, by being positive I can beat it. I told her he was palliative. She corrected me, reminded me to stay positive to beat cancer.
Although I recognise these statements are intended to give me hope and encouragement, it didn’t land well with me.
I felt like any progression in his cancer had a direct correlation with my positivity and I was not being positive enough. I wasn’t feeling very positive about cancer and what it was doing to my life. I felt guilty each time I told someone about his actual prognosis and did not often feel welcome to share the truth of those tough days.
Now of course I know all these efforts were made with the intent to help, connect and comfort me. Nothing nefarious. It’s how we’ve seen support offered in the movies. However, as someone in the depths of a new cancer diagnosis, these were the three most challenging and repetitive comments that made me feel worse, pressured or at fault.
If you are in the early stages of a cancer diagnosis yourself or someone you love is, if any of this rings true to you, I want you to know this: yes, it’s terrible and you are doing your very best. No one feels like 'making the most of it' when they are having chemo and feel terrible.
It’s perfectly normal to be sad and angry.
It’s completely fine to say no…. all the time if you want.
You’re not letting anyone down and none of this is your fault. You’re fighting for your life, your family, and that is epic.
A friend suggested I use the phrase 'that’s not helpful right now' for all the above categories as a polite but firm stop to a conversation.
I used it often, as a kindness to myself to prevent further unintended pain.
Its okay if you don’t want to hear it either.
*Devine M. It's ok that you're not ok: meeting grief and loss in a culture that doesn't understand. Boulder, CO: Sounds True; 2017.