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.
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.)
- 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:
- 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.
- 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.
- 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.
- 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 39th
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.
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.
