Patches on my tongue; dealing with uncertainty

Two weeks ago, in my hotel room in Singapore I noticed a small patch of whitish gunk on my tongue. Actually two small patches. They looked suspiciously like the patch I noticed last May. This being the digital age, I’ve obviously compared last May’s images to the ones I’ve taken (pretty much daily) of this year’s vintage. To my (of course) untrained eye, they’re pretty similar. The patches have gone through changes, they haven’t grown noticeably, they’ve even looked like they were dissipating, but they haven’t (yet).

I’m seeing Cyrus on Wednesday. His advice is that we have to wait a few weeks before we can do anything. He won’t know what they are until they do a biopsy. Of course, I might wake up tomorrow and they won’t be there. In fact, I’ve not looked to see if they are there this morning. Perhaps they’ve gone already?

My biopsy history on this sort of thing is one and one; the first gunky patch (from memory on the left side) was nothing to worry about. The word used was displaysia which means “cells of an abnormal type which may signify a stage preceding the development of cancer”. That was in high summer, I think of 2015. The second (on the right side) were invasive cancer cells and led to last year’s operation to remove a chunk of the right side of my tongue, replacing it remarkably with a flap from my wrist.

These two are in the middle of my tongue which has led to me musing about whether they will cut a circle in the middle where would they would fill that from? Cyrus’s advice has always been a very reassuring “we’ll deal with it if it comes back”. He knows what he’s doing and I think it’s best to leave it to him to advise on the nature of the intervention. I admit that I have thought a bit about ‘the Sugababes question’ over the last couple of weeks; could they still call themselves the Sugababes even though the original members had all been replaced? When does your tongue stops being your tongue, so much of it having been replaced by (I’m imagining) random parts of your body?

One of the things I was talking to people about in Singapore was ‘Dealing with uncertainty’. My experience with cancer has improved many things about me and I had thought (until now at least) that living with uncertainty was one of them. I accepted back in 2009 that I might die from the treatment, that my future may not involve me. From that start point surely comes an ability to deal with uncertainty? So, I’ve been quite surprised by how much these two blobs have discomfited me. I have been feeling very strange. I think Recurrence was an idea that I saw as part of a medium-term future. Last year’s tumour came seven years after the first one. That was the sort of rhythm my mind had unconsciously adopted. Why is that? Particularly when you think about the seemingly unremarkable and inconsequential nature of these little patches of gunk.

This morning, as an intellectual exercise, but to try and deal with uncertainty I thought I would try and write down the questions I want Cyrus to answer on Wednesday. Despite my overriding feeling that there is probably nothing he can really tell of any importance, that this is all down to me and how I view it.

Question 1. Is a question that I have certainly been thinking about: ‘Could this thing actually kill me?’. A month or so ago, before I saw the patches, I was chatting to one of the hugely supportive people cancer has introduced me to, having the sort of conversation I have never previously had with anyone. She told me that she was clear that she would die of her cancer, she just wasn’t sure when that would be. The way she said it sounded very upbeat and had a real impact on me. I said to her, after some reflection, that I genuinely didn’t think mine would kill me; I thought I would die of something else. I’m not sure that I feel any different now, a month later, even post patches.

Back in 2009 we were told by the first (of many) oncologists we encountered that ‘we don’t actually lose many people to the cancer’, his point was that it’s the treatment that gets most people. I certainly came close while I was immuno-suppressed. Since then, despite the gross pictures you sometimes see on today’s high impact anti-cigarette packets and advertising, I think I have had a strangely benign image in my mind of mouth cancers.

As I say that I think about the deterioration I saw last year when the thing on my tongue went from inoffensive blob (like I’ve got now) to a painful, unpleasant ulcer in three or four weeks. They ended up taking much more of my tongue off because of the rate of growth and they didn’t like the way that it had spread; it didn’t have straight edges. So, the first question I think becomes otiose. I’ve reminded myself of my own simple rule of managing cancer: ‘Deal with the thing in front of you now. That way I can walk around thinking that my mouth cancers aren’t going to kill me.

Question 2 (or actually Question 1 because I won’t be asking Question 1) becomes; ‘How disabling is further surgery likely to be?’ Because that is what I want to know. Will I (as someone who talks out loud for a living) be able to continue making a living? If I am honest, most of the uncertainty and negativity that has been circling my mind in the last few weeks has been more related to our financial security, to providing for my boys, to my career choices. It hasn’t been about repeating the pain and discomfort of last year’s surgery, or about the debilitating effects of the treatment I had in 2009. It’s been about ‘stuff’.

The truth, of course, is that Cyrus isn’t going to know how disabling any surgery is going to be. Although I clearly remember the words of his Speech and Language colleague form last year: “You’re driven right? You’ll be fine!” What he was saying was that they’ll take a bit of your tongue off, but you’re the sort of person (having just met you) who will overcome that and you’ll make yourself understood. I’m suddenly reminded that seven weeks after last year’s surgery I stood up and did a session for 200 people in an auditorium in New York. For the first time ever, as I write this morning, I feel proud of that. I see that as an achievement rather than as the rather selfish, foolhardy escapade that I inflicted on the people I love who were trying to support me at the time. And I remember that Cyrus was the only other person who wanted me to do it.

Because the answer to Question 2 is a resounding: ‘It’s a disabling as you let it be!’

I genuinely don’t want to ask Cyrus any questions. I manage my cancer, and I suppose that we manage uncertainty by focusing on what’s in front of us now. You take the greatest pleasure you can in the moment you’re in, the sunshine in the garden right now, your dog yawning. You focus on two patches on your tongue and not on your career choices.

In the middle of last night I remembered something I had forgotten. The day I was first diagnosed in 2009 I told my brother that I would sleep soundly that night because there was now actually only one thing to worry about and there was no point worrying about that because I had no control over it. I clearly in 2009 that I had spent the last 20 years worrying about, exercised by stuff that simply didn’t matter. And here I am in 2017 doing it again!

What matters is sunshine and love. Possibly Arsenal v Man City this afternoon?

Postscript. I have just made a coffee and while waiting for the kettle to boil I took a quick tongue selfie. I’m getting very good at them! Anyway, I’m not saying that the patches have gone, but they are certainly far less distinct than they have been. Maybe they haven’t properly woken up yet? But anyway, I’m feeling much better about them!

Matt Dean 

We lost the whole of Tuesday. I woke on Wednesday in Marsden's ICU.  Still high on whatever they had pumped into me!

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