5 pieces of advice on how (not) to talk about cancer

How we talk about illness can profoundly influence our experience of it.

Last week we picked up in a hospital waiting room a pamphlet called “Lost for words.”

It’s a practical and clearly written guide on “how to talk to someone with cancer.”

We wish we’d come across it earlier.

As parents of a child who has cancer, Selam and I often talk for him (Mercifully, Asa doesn’t yet understand his condition) and others talk to us as his supporters and carers.

Some misunderstandings that recur in our conversations are well addressed in the pamphlet.

http://be.macmillan.org.uk/be/p-251-lost-for-words-how-to-talk-to-someone-with-cancer.aspx

In lieu of sending it to everyone we know, we’ve taken from the pamphlet five lessons that seem important -- expressed here in our own words.

(Following the format of the guide, we write about how to talk to “a friend with cancer”; but the advice applies equally for those caring for someone with cancer.)

1. Don’t worry too much about exactly what to say.

When a friend has cancer, trust that voicing your concern / sympathy / desire to help -- and being there for them -- will be appreciated.

Too often, people obsess over getting the message just right.

This can lead to a self-imposed gag, and end up making the cancer patient feel all the more isolated.

There are, however, some things one can do to minimize the risk of clangers:

2. Before you put your own or someone else’s cancer story on the table, reflect on the similarities and differences. 

Some stories can be very valuable -- providing insights into new treatments to pursue, or ways to make sense of experience.

Other stories can raise false hopes, or create unnecessary fears.

3. Avoid over-confident or over-optimistic declarations.

Don’t say, “As long as you stay positive, it will all work out fine”!

Cancer doesn’t work that way.

It’s true that people who survive often attribute their survival to psychological or spiritual fortitude -- In the words of a charming young woman who had retinoblastoma as a child: “With a bit of Aunty Faith and Uncle Percy (perseverance), there’s nothing you can’t do.”  

But if a sufferer adopts this belief and then doesn’t get better, it can feel like a personal failure.

In such cases, the physical illness is compounded by feelings of guilt.

Sympathy and hopes or prayers for the best will almost always be better received than optimistic declarations.

4. When using humour, follow the lead of the person who’s suffering.
   

In the right moment, laughing about one’s predicament (or any facet of it) can be a most uplifting thing.

But don’t reel off your top 10 cancer jokes impromptu!

            Instead, take cues from the person who’s living with the condition.

           

5. Meditate on what it means to live with uncertainty.

In Birmingham last week we met a woman whose son, at nearly 4 years old, was having his 39^th examination under anaesthetic.

In the course of these many exams, they had seen progress and reversals.

“People never understand,” she said, “that if things look good at one exam, it doesn’t mean you’re out of the woods -- that you’re in remission.”

“There’s no telling what you’ll find next time.” 

Good news one day can be undone the next.

What cancer teaches us is how to live with uncertainty.

Every month, every week, every day of life lived free of suffering is something to celebrate.

Update

Asa’s exam last week produced very positive results: For the first time in 18 months, there was no new tumour growth to report.

We are profoundly grateful for this, and remain hopeful that the treatment will continue to produce good results.

We go back to Birmingham for another exam in 3 weeks time.