The Angry Carer

Scared? In shadow? You bet.

A few months ago, Christine gave me the book Grace and Grit to read. The author, she said, is quite the philosopher. "Good", I thought, this will do me the power of good; a man describing the joint journey of a couple going through cancer. The ups and downs, the coping, the dealing, the however-many-stages-of-grief. This, I thought, will be good.


I read a little; I thought a little. I read a little more; thought a little more. Read more, thought more. Then I read some more, and stopped. It turns out that my journey is very different from his, Christine's from Treya's. It irritated me, he irritated me, and I finally decided that this was a book I would gladly burn pop in the yard sale box.


There is, of course, a reason. I am not Ken Wilber. I'm a little angrier than he; coarser, more...vulgar. I dislike bullshit and I declare that "it's not fair!" because deep down inside I still have the little boy who wants and expects the world to be a just and honest place, where there are no monsters hiding under the bed.

Sometimes it's like housework...

"It's not all beer and skittles", they say, and it's true. Sometimes, life is harder than we'd like it to be, the cards we are dealt are not the cards we'd like. I was talking to a poker-playing friend once, and I wondered aloud how the heck anyone could want to play a game where the odds are apparently stacked against you. His response was fairly simple. He said that in poker you get to fold, take a little loss, and come back in the next hand. That and you can work out the odds, or you can bluff and still win with a poorer hand.

The hand I currently hold doesn't seem to be entirely a strong one. I have an Ace of hearts in Christine, a Queen of hearts in Tess (who is 10½), but for the most part, I feel that I have dross in the rest of my hand. Not that I'm going to fold, not that I'm going to lose entirely, but playing the hand right is important for me and the rest of the family.

Christine is treatment-weary, the chemo is hard on her both physically and mentally. I'm treatment-weary too, just in a different way. One of the things that I am finding as a carer is that I feel I should always be doing stuff. If it's not making drinks, or meals, or juice, it's laundry or housekeeping or shopping. If I'm not doing one of these things, I tend to feel guilty. I fret if I'm sitting and relaxing. I agonise if I sit down to write.

I was talking with my sister-in-law a few days ago, and she came up with an expression that I'm going to share here. To put it into its proper context, we were talking about why some doctors really seem to enjoy their jobs, and some don't. Part of her reply was this - I think lots don't enjoy it because it isn't what they thought. They thought they would make people better. But it turns out to be messy and complex and the person gets sick again, damn it. It's like housework.

Well, what do you know. That's just like looking after someone with cancer. You do a thing, and do it well, only to have to do it all over again soon afterward. Chemo is like dusting. While it's going on, it seems never to end. There's always more tiredness, always more painful and inconvenient symptoms, always the fatigue. What respite there may be after a few days is too short-lived. The dust will be back on the bookcase all too soon, and out comes the feather duster once more.

This is how it is - if Christine stays in, I stay in unless there's an errand to run. Once she goes out, then I feel free to go out myself.

That's the tiring bit, that doing it all over. So why do we do it? I don't know about doctors, but I do know this. Looking after Christine (and Tess too) is a lot more rewarding than you might think. We know right now that Christine has no evidence of disease (NED, nice acronym from her oncologist), and the last round of three sessions is an insurance policy. Whilst it's expensive (in terms of the short-term suffering), it's worthwhile in the long term. Even if all this means just a few years (and we're hoping to beat all the odds), it will be worth it.

I am starting to realise that the way to tackle this is not to try and do it all at once. Vacuum the living room carpet, have a cup of tea. Tidy those books away, sit and read a few chapters. Make the bed with clean sheets, treat yourself to a wee snooze, not forgetting to set an alarm. For the love and the pride and the honour and the joy, I carry on. I just need to remember to take some time to look after me, too.

The last few rounds

So we had some good news recently. In short, Christine's cancer seems to be on the run, at least for the moment. When she was first diagnosed, we were devastated to learn that we the docs weren't looking to cure it, rather to manage it as a "chronic disease". Since then, the various chemo drugs have taken their toll. She's tired, her body aches, she's nauseous and has little appetite.

The change from the original Taxol drug to the newer Paclitaxel NAD has given us a couple of breaks. Firstly, the Paclitxel does seem to produce less neuropathy, so the feeling in her feet and toes is returning. Secondly, it turns out that the new drug gives a better response rate, which is good for the long-term outlook.

All this means that Christine can carry on her ballet lessons. In fact (and I'm proud of her for this!) she recently did some pointe work for the first time. Given that this was a long-term dream for her, see why I'm so proud of the acheivement, not just that she did it, but did it partway through a long and arduous chemotherapy regime. It may not sound like much, but from the look on her face it was worth every moment and every penny, by gum.


After thanking Doctors Dollbaum and Laptalo, I'd like to reserve a moment of silence for the insurance company. Silence, because I lack the words to describe how I feel about you, Anthem Healthcare. Thank you for picking up the Paclitxel, no thanks for declining the anti-nausea drug. Having a wife whose belly is in turmoil is no picnic, and taking a swipe at her quality of life over a few dollars strikes me as pretty bloody poor. They say that the new regime causes less nausea. Well, they are right, but the statistics show that 3% of patients suffer extreme nausea and vomiting. Guess what? Christine is in that 3%, you unspeakable gits.

Speaking of quality of life, I find myself struggling at this point. Goodness knows how Christine is coping, fraught with worries about the future, and with a body poised on the brink of falling apart from the inside. All I have to do is make a few meals, juice her now and again, and try to keep her spirits up. God knows I try, and God knows I fail all too often.

I'm angry. Angry that the damned cancer came back, angry over the health insurance and pharmaceutical companies squeezing every penny for their shareholders. Angry that we have to fight for better treatment, angry that we fail. Angry at myself for failing to cope, angry that I'm probably not looking after myself as I should, which means that ultimately, I'm not best able to look after my family.

I find myself snapping at them, snarling at the world outside, being grouchy and grumpy. And inevitably, we fight. Every weekend, Christine tells me. I have to take her word for this, as I'm not tracking. Only today really exists. Yesterday is a ghost of time, tomorrow is so uncertain.

Finally, I'm sorry. Sorry I rant. Sorry I shout. Sorry I vent and want to throw things. Sorry I'm not caring as I feel I should.