Staying the course

Sometimes I feel as if my whole life now is about my condition and everything else is pretend. I’m busy with treatment and seeing specialists and otherwise mitigating the symptoms and trying to get stronger. The rest is filler.

At those times, I feel stuck in a melancholy loop I can’t escape. I realise the true state of my condition and what it means for my life, as it is. There are moments it feels unreasonable and unfair. As in the cliche, I even wonder ‘why me’? It passes very quickly, but I know I’m marked forever now.

I get told quite often how strong and resilient I’ve been. There’s admiration for how I’ve survived and seemingly pushed through the pall of darkness that accompanies a diagnosis of cancer.

I’m genuinely modest when people express their respect. What other option did I have, I wonder. All I’ve managed to do in the end is to survive. Each day, so far, I’ve woken up.

But when I feel the all-consuming nature of my condition, I begin to understand more. It’s like the curtain is thrust aside for a moment, exposing the ugly reality. The trick has been to keep the curtain closed because to reveal what’s behind it does no good. Resilience is needed to stay the course and to keep going when those moments come, and when the hum of what lies behind the curtain cannot be ignored.

My hyperbaric treatment has finished, which means I can resume a more normal routine. As I keep proclaiming, I get stronger and fitter all the time, and am powerfully motivated to continue the trend. I’m often reminded, however, of what I don’t have.

I’m back home after a couple of days in Sydney for a conference. It was a very busy time and I was involved in, or initiated, a number of important discussions with partners and vendors. My mind went a million miles an hour figuring things out and putting them together. Out of that came a lot of questions.

I felt driven and productive, but I was also reminded of my limitations. Speech is more difficult sometimes, especially when I’m tired. I become harder to understand at those times, though I think there’s a minor impediment always. It’s frustrating when you’re trying to articulate complex concept’s intelligently. You become self-conscious, hyper-aware that people are hanging off your every word. In places where there’s a lot of background noise, such as a conference, you feel people straining to understand you, leaning in and occasionally asking for you to repeat yourself. Sometimes you can see in their eyes that it’s gone past them altogether.

I feel like screaming then: this is not me! Often, I’m speaking to people who know nothing of my medical history and I wonder what they make of me. I want to explain to them apologetically that I’ve had cancer and unfortunately one of the side effects is how it’s made speaking more difficult. It will pass, I want to tell them, an aberration – please excuse me.

To be clear, unless I’m tired, I’m easily understood in quieter environments and good with simple language. It’s words with multiple syllables I sometimes struggle with.

The other side of that is my hearing. If I’m hard to understand in noisy environments, then it’s true also that I find others hard to understand. Very often these days I practically give up on hearing all the conversation, relying instead on the bits and pieces that make it through to me, and the visual cues you pick up along the way.

The other thing is my eyesight, which has markedly deteriorated. I can still see fine, it’s just fuzzier than it was. I wonder at the timeline of this as I’ve only recently noticed how much it has declined. It will be because of the radiotherapy. I’m getting my eyes tested today.

Yesterday, I had another appointment with a plastic surgeon. This was a senior guy who had the manner of a senior surgeon – that is, I felt like a case rather than a human being.

He examined me, tut-tutted a little, then said I had not healed up as well as he had hoped. He suggested to me an experimental procedure if I was open to it? Basically, they remove fat from some other part of your body – probably my belly – and apply it to the affected area, inside my mouth. The idea is that it will spur growth and recovery. I agreed to it – what else was I to do? It’s only a day procedure.

He was sceptical about further surgery, which was welcome news, except that it means I’m stuck with the current constraints. There’s a piece of bone jutting into the side of my mouth that effects my speech. There’s another hard piece of bone in my cheek – which has no equivalent in the other cheek – which I think prevents me from opening my mouth wide. Both were placed there by surgeons in the major surgery last year (using bone from my hip), and must serve some purpose. It’s uncomfortable and inconvenient, but clearly they’re staying.

He said my speech may improve and that some of the swelling may diminish. He suggested I consult a speech therapist. It wasn’t completely convincing. Otherwise, he suggested some contraption to help me open my mouth wider.

From what he said, it’s clear that the healing has a fair way to go. They won’t do anything of significance in any case until it’s properly repaired. He explained that the radiotherapy basically zapped the skin and bone to just this side of dead. It was necessary to kill the cancer, but the fallout was everything I’ve been experiencing.

Bottom line is, as I’ve said before, there’s a way to go yet. I just have to be patient and accept it.

PS as I’ve written this I’ve had a call from the optometrist inquiring why I’m booking an eye test so soon after my most recent? I explained that I’ve had cancer since then and my eyesight has deteriorated. There was a pause then, quite familiar to me now, as that was digested and she formulated the appropriate response.

I understand and I’m sympathetic, but I hate this. On the one hand I want people to know to explain my symptoms – to excuse them, as such, and set them aside – but on the other hand I don’t want to be pitied or made to feel different or special. I don’t want this thing to define me, yet the reality is that it is the defining fact of my present existence.

End of the day, this is something my body has suffered, but the man inside that body remains. I’m strong and smart and determined. I’m hard at it, and perhaps there’s even a harder edge to it these days to prove I’m no different, to defy the common narrative.

It’s an interesting journey.

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