I'm a 52 year old husband and father. Another privileged white bloke, but one who realised just how blessed I am during aggressive cancer treatment in 2009 (that I later learnt nearly killed me). In June 2016 I had a second diagnosis and surgery to remove and replace part of my tongue.
We lost the whole of Tuesday. I woke on Wednesday in Marsden's ICU. Still high on whatever they had pumped into me!
“Nothing to worry about”
April 18, 2017
By the time I heard those words, I hadn’t in fact been worrying for a while! Cyrus left a voicemail message with the histology late on the Thursday night before the Easter break. Having confirmed what he’d suspected (that there’s nothing to worry about) he mentioned keritosis, thickening, and “very mildly abnormal cells”, probably related in some way to last year’s surgery.
I’d stopped being concerned a week or so previously when Cyrus looked in my mouth and clearly wasn’t worried by what he saw. I’d seen some patches that looked like last year’s. He saw something completely different; he talked immediately and expertly about location in relation to last year’s tumour and about how much time had passed since the operation. I was struck by the (obvious) gulf in our understandings of what’s happening in my mouth.
I’ve often commented that it’s a good thing that this is all going on somewhere I can see, but suddenly I’m less sure. I’ve spent a couple of weeks in a strange dislocated state imagining further surgery. The first surgeon I encountered in relation to my cancer happily used the word ‘mutilating’ to describe the surgery he was envisaging. It’s stuck with me! Cyrus (who is a very different type of surgeon and wouldn’t use the M word!) immediately said he didn’t think there was a problem and, if there was, we could “laser it off” with an overnight stay in hospital. After last year that, of course, sounded a bit like a spa treatment – which I suppose tells its own story.
The learning is obvious; I know nothing and should expend no energy whatsoever on anything more than pointing out things I notice to people like Cyrus. Is that realistic? It’s my mouth, my cancer, my family and my career being affected. Except that it isn’t, because there was nothing there. There was “nothing to worry about”. And quite a bit of unnecessary worrying had been done if I’m honest. By quite a few people!
The idea that I might see something on my tongue and think no more than “I’ll let Cyrus know about that” seems somehow more likely now that I’ve had what looked to me like a recurrence and it simply wasn’t. Cyrus has always said (and I’ve always believed him when he said), “we’ll deal with it when it happens”. And that fits in perfectly with my two rules for dealing with my cancer:
#1 ‘Deal only with what is in front of us now’.
#2 ‘Tell Kate* absolutely everything’.
*Kate was in charge of my care at the time that rule was put in place (at her insistence).
Now I know that dealing with a tumour may not involve ICU and invasive surgery or chemo/radio therapy, just a simple ‘lasering bits off’, maybe it will be easier not to let the mind wander. Certainly, it was the scale of the response to last year’s (initially seemingly inconsequential) tumour that bothered me over the last few weeks. Now I’m clear that there’s a gradation of interventions, that every white patch doesn’t mean I’ll lose bits of tongue!
Something else is bothering me. When I first saw the patches, I was on my own, travelling with work. I’m not saying that my reaction was “I’ll let Cyrus know about that” and no more. But it was a bit like that; I certainly wasn’t musing over potential interventions. I was getting on with stuff and (largely) forgetting about it. I came home, I mentioned it to my partner, she (obviously and understandably) had a reaction. I reacted to her reaction. This is not blaming her in the slightest; she’s going to have a reaction, it’s the reality of a relationship. Her job in all of this is harder than mine; all I’ve got to do is deal with the stuff!
However, the obvious product of a second party’s involvement is an escalation in the emotional energy being expended on an issue. Having seen my own reaction change as others were involved, I’m thinking should I have kept it to myself? I’m not that good at keeping anything to myself, but I could try!
There’s a moral implication to not alerting someone who's closely involved. But the recent learning is that there was nothing to worry about. A couple of days before my appointment I could have said (lightly!) “By the way I’ve sent Cyrus a photo of a little thing on my tongue that looked a bit like the sort of thing we’ve biopsied in the past”. And Cyrus probably would have said when he saw it, “I don’t think there’s anything to worry about”.
That feels to me like it’s probably the right way to deal with this stuff going forward – certainly if the objective is to minimise the amount of emotional energy being expended unnecessarily. I haven’t been able to focus properly on stuff. Loads of people; parents, family, friends and work colleagues have all been involved and expending emotional energy unproductively. That’s sort of what love or consideration is all about. But it wasn’t necessary or productive.
I want to work on my equanimity; on showing greater calmness in a potentially difficult situation. It’s not about denial or not respecting the disease. It’s much simpler, it’s about living in the moment and recognising that I know nothing and can predict very little (if anything) in terms of disease. I caught myself yesterday doing the thing that I promised I’d never do: I googled dyskeratosis. I’d basically wanted to know how to spell it but I read a couple of lines before stopping, thinking ‘how is this helping?’ I’d just read the words ‘potentially life threatening conditions.’ That’s what reminded me why I don’t google medical stuff – ever.
We’ve all got a potentially life threatening condition. It’s called life and it’s threatened by the fact that we’re all going to die! Let’s see how I go with showing greater equanimity, living in the moment and making no attempt to cast forward if I see anything that needs reporting.