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!
Update for Doug - from the airport
August 10, 2016
I’m writing sitting in the BA lounge at Heathrow. On a whistle stop trip to New York to do a work thing. Everyone (apart from my surgeon Cyrus) thinks I'm mad. To me it's daunting, but it was a goal I set myself with Cyrus' backing the first time we met post surgery. So it has sort of defined my recovering. I'm obviously worried about talking for more than a couple of sentences (and about not being understood - but if you check out the videos on the site you'll be able to see the progress I've been making there).
Boo has (rightly) taken me to task for downplaying how difficult things have been/continue to be in those videos. The main thing I'm still suffering (physically) is basically tiredness or frailty. I spend quite a bit of time sitting down and yes there has been some cricket watched, both on the TV and down the road. We spent last week in a lovely house by a lake in deep rural Sweden. Did very little.
My throat feels 'better' now. Different to how it was because they have fiddled about with it (which is a soft way of saying removed stuff like neck nodes). When I mentioned to Cyrus after three weeks that I was surprised it still hurt as much as it did he famously said 'you wouldn't be surprised if you had seen what we were doing to it three weeks ago!' Reassuring.
Where they went in through my neck the scar is settling down very nicely. But there has been nerve damage inevitably. My right ear and a four inch circle of my skull around it feel strangely numb yet sensitive. That feeling was intense but has reduced. The right shoulder is all out of whack; it's fallen into a very asymmetric shape and it hurts particularly in the morning. But l've started seeing a reassuringly confident, sport mad physio called Dawn who has taped it up and is clear we'll sort it.
The jaw feels tender to the touch and the soft bit under the jaw is unpleasantly hard. But it doesn't hurt at all. The donor site on my wrist is progressing at a remarkable pace. Three weeks ago I couldn't even look at it, now it's dry and very quickly trying to blend in to its surroundings. It's an oval shape and about the same size as an After Eight (which I realise isn't oval!) It's a redder hue than the rest of my arm but I think it's becoming less red as quickly as the raised lip around the shape seems to be receding. I get some strange sensations there. Not really pain. More tightness. There is also a Frankenstein type railway track scar running from the graft site to my inner elbow. It's where they harvested the blood supply that went with the flap. The second donor site (from where they filled the hole in my arm) is in the crease at the front where my left leg joins my abdomen. About six inches long. It's basically a scab and it’s healing nicely. I have largely ignored it and it has given me no pain/discomfort at all.
The tongue itself is difficult to describe. It improves daily; after all it's a muscle and I'm working on it. The left hand side and the tip are untouched. The 'flap' they stitched on is quite sizeable, extending basically to the mid line and back (my wrist would suggest) about five cm. It's thicker than the original tongue although from what I understand from Cyrus, flaps tend to reduce in size (?) Of course, it doesn't flatten like a tongue does, which is a bit strange and is unlikely to change. It has limited feeling. If I get it between my teeth and press down, I can feel what I'm doing, but it's not painful. Taste doesn't seem to have been badly affected, which is nice! Eating itself though remains something of a challenge. I have to chew things very well but struggle to position things with my tongue. I'm also struggling with some stuff getting stuck to the roof of my mouth. It's amazing how much your tongue does. Imagine that you had a tongue that you couldn't reach the roof of your mouth or extend in front of the teeth. As I say, I'm working hard at all the various movements and that will strengthen it. The speech will progress with that to.
Quite rightly you've suggested that the psychological side of things is perhaps a bit more complex. I think that the fact that I have lost a good part of my tongue is possibly, of itself, quite difficult, quite .... traumatic. Your tongue is not like your hip or your lung or liver. It's part of your identity or personality. I foresaw that I might struggle and, whether for that reason or not, so it is proving. This isn't just about being frustrated by how I sound. It's more a feeling of emasculation. Possibly I'll relearn to do some of the things? For example I tried to kiss someone on the cheek recently and realised that all I could do was put my lips against their cheek. I couldn't make a kissing noise or in fact purse my lips properly. More learning!
Then there is the realisation that there is no reason for an HPV related mouth cancer not to return. You could equally say that there is no reason for one to return either. But that feels rather naive to me. I had one when I was 44, then 51. How odd would it look statistically if I didn't then get one whilst living to a ripe old age? This takes a bit of adjusting to. I want to treat it as an unignorable catalyst. I want to remould my life to incorporate more of the stuff that I enjoy and that is important to me (as we all should). I think I'm just struggling at the moment with the shape of the mould.
I've also made things far harder for those around me than I did last time. By focusing inwardly to get through things. Last time felt like a genuine team effort. We created time to talk and I listened as I had never before. This time it did not feel like there was time to set up those structures; of course there actually was time, we (I) just didn't do what we knew was important from experience. Possibly because of the speed at which it happened and the intensity of the trauma, I have been far more introspective and less thoughtful about the impact of things on those around me?