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Showing posts from October, 2013

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.

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

Another lesson

Since the last blog post, I've been to Ethiopia, we walked across London to raise awareness of eye cancer, and we moved house.
Things have been kind of busy.
But really the biggest news is that the treatment Asa's been receiving -- a combination of chemotherapy (using a single drug, Carboplatin) and aggressive cryotherapy -- seems to be working.
He has had two exams under anaesthetic in Birmingham since the treatment began, and the results have been more positive than we felt beforehand we could hope for.

The tumour load in the right eye has decreased to less than 10% of what it was before the start of this treatment.
In the doctor's words: “We're not there yet, but we're definitely headed in the right direction.”
In addition, Asa had a cataract operation at the end of September.
That went smoothly, and with the cataract out of the way it’s possible to show that there was very little new growth of the tumours in his left eye during the time that they’d been hidden from …