Paperwork and pain in the bucket

Andrew Enright
CC by nc sa Andrew Enright

Y’know what I am right now besides tired? Angry. Really angry.

At “bucket list” posts, conversations, movies and people who blithely describe what they’d do with their hypothetical last year or so of life.

Because truth is that potentially terminal illnesses for the middle class and lower class seems to be all about paperwork and pain. Any happiness is tinged with sadness. Any semblance of normality achieved through cultivated numbness. Having to see the pain on the faces of people you love as you provide updates. The voices over the phone pausing, hesitating and you know it’s due to pain and awkwardness.

My husband has a tube running up his arm to just above his heart so that it’s easier for the poison to drip in.

We’ve been advised that he needs to use a different toilet than I and that we shouldn’t have sex without condoms at least because he’s full of poison.

And of course there will be his physical discomfort. 48 hours after chemo finishes, the love of my life – my husband, best friend, family – could be puking into baggies. In a few weeks his hair, eyelashes and eyebrows could be raining down. Or as the nurse put it, he could be “moulting quite heavily”.

He’s got to work as much as possible. We’ve got to find out if we can access his superannuation/retirement early without too much tax pain so that we can pay off our debts and live on my income. Which I am struggling to make because I can’t sleep and thus am finding it hard to work without sobbing at my desk.

Radiation treatments are $3500 per week. We’ll get all but $350 (roughly) back, but have to cough it up each time up front. Plus the extra money for transport, medication for side effects ($150 just yesterday), time off for illness, lack of sleep, administration, etc.

I get asked if we have any children involved. My reply is “No, so I will have NOTHING left of him when he eventually succumbs if no cure is found by the time we run out of chemo options. The same chemo options that cause these crappy side effects.”

My husband isn’t going hog wild on some bucket list because he wants to be sure I won’t be bankrupt in addition to being bereaved if a cure doesn’t eventuate by the time all the lines of chemo are circumvented by his all too clever cancer. So, the next time you play “what if you only had a year left” ensure that first you think about the paperwork and pain and people left behind. And have some respect.

One Reply to “Paperwork and pain in the bucket”

  1. I have no words, Kerry. Just leaving this message so that you know I’m here, reading your posts, acknowledging your journey, feeling very sad for you both.

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