During a recent hospital appointment, my oncologist mentioned that he wanted me to have six-monthly infusions of a drug called Zometa, to strengthen my bones, for the next three years. It was primarily to protect my bones from the cancer spreading there, he said, but a useful side effect was that it would help to reduce my risk of osteoporosis. Almost as an aside, he mentioned that it isn’t available on the NHS yet, and that my health insurance company are unlikely to cover it, since it’s preventative (this was also true for my oophorectomy and my double mastectomy).
He was right about the health insurance, so I arranged to have it at my local NHS hospital as a ‘top-up’ patient. I didn’t give it much thought. It was one more hospital appointment on the calendar. A couple of days before, Paul asked me whether I knew what the side effects were. I didn’t. He looked them up and read them out to me. It took a long time. I still wasn’t really fazed. I know from having chemo that not everyone experiences every side effect, and that all you can do is wait and see.
The infusion takes about twenty minutes, but for various reasons (filling in paperwork, making the payment over the phone, seeing the oncologist about my blood test results, and plenty of waiting around), we were at the hospital for close to five hours. I was wincing my way through Stephen King’s misery, and didn’t really mind too much. The infusion itself, when I finally had it, was fine. We went home and put the kids to bed.
At some point in the early hours of the next morning, I started having feverish half-dreams. The kind where I hit upon ‘amazing’ ideas for stories and novels that I planned to start the second I awoke (and had no recollection of ten minutes later, which was probably for the best). When I woke up properly, and Paul brought Elodie into bed with us, and Joseph clambered in of his own accord, I realised that I wasn’t well. I was sweating and shivering, aching all over. I was supposed to be looking after both of the children that day (with some help from Paul’s mum) and I just knew that I couldn’t do it.
Luckily, once again, friends and family stepped in. My mum and Paul’s mum juggled childcare for the next couple of days, while I lay in bed with the door propped open so I could feel like I was involved. They kept bringing Elodie up to see me, and Joseph visited often to tell me what he was doing, and apart from feeling hideous, it was quite lovely. A local friend offered to take Joseph out for a couple of hours, and they went to the park and for a drink and a flapjack in a café, and he came back full of smiles and stories.
As all mums know, a couple of days in bed is the stuff that dreams are made of. Unfortunately, whenever you get that time, the circumstances are usually such that you can’t enjoy it. I couldn’t read, couldn’t sleep, couldn’t concentrate on anything for more than a minute or two. I just lay there, useless, often unable to reach out from under the duvet to take paracetamol, because I felt so cold.
And then it was over, as quickly as it had begun, and I felt normal again. Not normal as in how I felt before cancer, but my new normal, which involves aching joints and a lot of tiredness. I’m glad I only have to face this ordeal twice a year, and I’ve read that the first time is often the worst, in terms of side effects. Here’s hoping. If it’s like that every time, I’ll feel a bit put out about having to pay £400 a go to feel like death.
As I came out of the fog, Elodie finally took a turn for the better, too. After weeks and weeks of coughing and wheezing, she’s managed four nights in a row of uninterrupted sleep (ending at 5.30am, which isn’t ideal, but I’ll definitely take it).
When people ask me how I am now, I say I’m fine. That’s it’s all finished. But it’s not, quite. I’ve read in various blogs and articles that it’s never really over, and that’s true. I still have frequent appointments, and I’ll never be able to forget all this or stop being scared that it will come back. When I asked a breast care nurse a while ago whether I can colour my hair now, she said ‘yes, just be normal now’. And it’s easier said than done, but I’m giving it a try.