The road back

It’s been a while since I wrote, mostly because I’ve felt too crook or haven’t had the energy or a combination of both. It’s no different today – I feel awful – but feel it’s time that I added to the story.

The story should be a good one and soon enough should start to feel well again, but, as they repeatedly told me in hospital, it will get worse before it gets better. It’s definitely got worse.

I finished my treatment on Friday. On Wednesday, I had my last chemo session, which was modified from the previous two because of the potential damage to my hearing. I was put on a lower dose of a different formula and the side-effects were much less.

On Friday, I had my final radiotherapy session and took home with me the mask I’d been wearing for the last six weeks, just in time for Halloween. It might make a handy scarecrow, also.

The creature from the black lagoon

I posted something to Facebook at the time, which I’ll share here as a summation of the situation and my feelings at the time:

You’ll see a lot less of me on Facebook unless I have something to report. I’m sure that’ll be a relief to everyone. Otherwise, the state of play is this:

As reported, I’m likely to feel worse before I feel better, but I’m ready for that. I’m on a sorts of painkillers now, including morphine and mouth cocaine.

I get told different things, but the most optimistic is that I should start feeling some improvement in about ten days – that’s Monday week. More generally, I’m told it will take about four weeks to get over the radiotherapy and another five weeks to recover from the chemo. That takes me up to about Christmas.

By then, the swelling should have receded, my hair should be growing again, and the other treatment symptoms gone. The return of my taste buds is an individual thing – anywhere between 2 weeks and three months. I’m praying for two weeks.

I’ve lost about 12 kilos and have little energy and no stamina. Most of my muscle has gone. It’ll take a while before I can restore my body to a healthy state, but a good diet will speed up healing.

I’ll still need some dental reconstruction – probably Jan/Feb. And I won’t have a test for three months. Until then, I’ve officially got cancer still, and the parties are off until I get the all-clear. That’s no certainty, but I’m very positive, as I think you must be.

Despite everything I’ve written here, I feel very strong, almost invigorated, and ready to take on the world.

Over the weekend I’ve felt progressively worse. To start with, it feels as if the swelling has become worst since finishing treatment. My eye is almost closed and I wake each morning with it sealed by sleep. It feels also as if some feeling is returning to my cheek, which is good news in the long term, but perhaps bad timing.

It means I’m feeling pain through my cheek and jaw. If I stroke my upper cheek, I can feel what seem like tendrils of sensation extending into the muscle.

My jaw and mouth feel closed up, almost blocked, on the right side of my face. On top of that, the mouth ulcers on my tongue and roof of my mouth have got worse. I’ve got an assortment of treatments and medications for this, but I’m wary of taking too much.

My nose is constantly blocked and often bleeding. I’m awash with the run-off from the cells destroyed through the treatment process. They clog my nasal passages and nostrils, they run into my mouth in a nasty, viscous liquid, and they make their way to my stomach.

My stomach is churning and nauseous, thanks to this toxic run-off. I feel sick from it constantly.

Perhaps the most disturbing is the feeling of weakness. I spent most of yesterday in bed, much of it just lying there like an invalid. I can’t get enough sleep. It worries me, though perhaps it’s normal. I fear it’s related to the lack of nutrition I’m taking in. My legs are very thin now; my torso much reduced.

The problem is that I’m too sick to eat and too busy being sick to get around to it. I have to force-feed myself in the moments available to me, though it’s a horrible experience. I’m doing fuck-all, but I wouldn’t be taking in more than 1600 calories most days.

I’m slightly better today. I’m out of bed and sitting on the couch after sitting outside earlier – it’s a lovely day. I hope to stay up most of the afternoon and can only hope for the time that it begins to turn, as it must – when the cells begin to regenerate rather than destroy when the mucus membrane begins to repair myself when the swelling begins to go down, and the ulcers start to heal.

Until then, I have to hang in there and eat. In retrospect, I may come to realise the most challenging thing about all this has been doing it solo – but I’ll expand on that another time.

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