I used rollercoaster as a title, and then I thought “Strange kind of rollercoaster – it only seems to be going down”.
It’s been a tough few months. I started capecitapine in March, and then had a massive, overwhelming life-threatening response to it (please please please note – I was very very unlucky, and it can be a really good medication) – my body doesn’t process capecitapine, so I was massively overdosed. And yes, they did blood tests beforehand, and I have the enzyme – but I’m one of the 3% who still don’t process it properly.
Stopped that. Well, I don’t think anybody – including my oncologist – was wild about going through that again. It is still an option, though, at a much lower dose. One to have in the back pocket. Stopping that meant going on IV medication, so I had a Hickmann line inserted so that I could have a 3 week cycle of docetaxel. Round 1 and 2 went OK – some taste distortion, lots of fatigue, but things like nausea were really well controlled. I was happy with it. Then, the week before Round 3 I developed an infection in the Hickmann. It tracked in from the skin, so I don’t think it was anybody’s fault – more bad luck – but it was a Big Deal – admission, 2 weeks of IV antibiotics, then 2 weeks of of oral antibiotics. Luckily, after the first week I could have ambulatory antibiotics at home, through a mid-line. I then had a portacath inserted. Two weeks after that, I was back in hospital with a pulmonary embolus. Home again with blood-thinning injections.
All of that delayed my chemo – which had already been delayed by the capecitapine disaster – so I’ve had 3 rounds of docetaxel over a time period when I should have had 6 or 7. However, the last CT scan showed that things are holding (and the megadose of capecitapine I had on board when my body couldn’t process it had worked really well).
I have missed out on visits from friends, the family holiday to Ireland, and a weekend in France (we decided not to fly against medical advice…).
My daughter’s gone to uni at the other end of the country, so although she zooms us and facetimes us and sends me pictures of cocktails and Bridgerton and snippets of news, she’s kind of protected from all of this. My son, however, is in his last year of 6th Form, and he’s right here and very aware. A few days ago had a muscle spasm in my back as I went into his room to see if he wanted a cup of tea. He looked up to me wincing, and asked if I was OK. He said his first thought had been that I’d be telling him I needed to go to hospital. He has taken to giving me a peck goodbye in the mornings when he heads off to school. He stopped doing that years ago, when he got too cool for kissing. He pops in and sits on my bed for a chat most evenings (I go to bed early. I get tired, and I don’t like to end the evening by watching the news. I’d rather read). He swabs himself for covid conscientiously. He is so aware.
My son was four when I was first diagnosed. I can remember him thinking my bald head was funny. The story we told him then was very different from the story we’re telling him now. My instinct, still, is to protect him from distress and from anxiety. We know his school performance dipped when I was hospitalised in April. Not a huge amount, but enough that his teachers noticed.
Not being able to protect my children is one of the worst things. The only thing that makes it OK is that I know they have a lot of love around them. Maybe I have instinctively sought out friends who will love them, shared them with family. And, of course, my husband, their father, is a good man, a caring man, a man who loves them so much.
How do I make this OK? I don’t think I can. I think we’re stuck with it.