The first Zometa

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.


The recuperation

I came home from hospital with four drains, and after a week two were removed. I expected to be more comfortable but I wasn’t, really. Every movement felt like trapped skin being tugged. Each morning, I measured the fluid that had been drained and called the hospital, hoping they’d ask me to come in to have the final two drains removed. Finally, after two weeks, they did. And as soon as the drains were gone, I felt like a different person. I’d walked into the hospital hunched over and wincing and I walked out like myself.

In those first two weeks of recovery, Paul and his mum and my parents had handled the childcare and looked after me. From then on, I was able to help a bit. Making dinner, feeding Elodie, that sort of thing. I still spent quite a bit of time resting, but frustratingly didn’t get through as many books as I’d imagined. Gradually, I got better.

Elodie didn’t, though. She’d been coughing and sleeping terribly for weeks on end. The night before my appointment for the first injection of saline to inflate my new breasts, Paul ended up taking her into hospital in the early hours, and was told she had bronchiolitis. She was still being monitored when it was time to leave for my appointment, so Mum drove me. I hadn’t given this process much thought. As the surgeon approached me with the needle, I asked whether it would hurt. He assured me that it wouldn’t. But it did. He couldn’t find the port which sits beneath my skin, so he ended up digging around a lot with the needle, and it was horrible.

After a few tries, he arranged for me to have an ultrasound and asked the sonographer to mark an ‘x’ on my skin to show him where the port was situated. For some reason, the sonographer marked a circle instead, which didn’t give a precise location. There were a few more painful jabs, and, seeing that I was crying with pain, the surgeon gave up. He said I should come back in three weeks and he’d try again. And he left the room.

A couple of breast care nurses stayed with me while I got dressed. I couldn’t stop crying, and one of them put her arm around me. She said she understood that I’d wanted to get the inflation process underway so that I could start feeling normal again. But it wasn’t about that. I’m really not too concerned about the size of my breasts. I was just in pain and feeling sorry for myself, and worried about my daughter, and so, so tired. The nurse said that if they couldn’t find the port next time, they’d offer to replace the implants. I thought, but didn’t say, that I wouldn’t go through another surgery. That, if it came to it, I’d stick with what I’ve got.

As always, friends and family rallied round during this time of recovery. Some distant friends visited and local friends brought brownies and flowers and cards and took Joseph for playdates. Every day, parcels arrived in the post. Chocolate, tea, biscuits, books. I felt spoiled, and lucky.

Throughout this entire period, we’ve all been taking it in turns to be ill (other than Joseph, who probably brought all the bugs home from nursery). Even now, six weeks after the operation, Paul, Elodie, both my parents and I have coughs and colds. I’m hoping for more sunshine, now it’s March, so that we can get outside more and breathe some clean air and finally ditch these persistent germs. I’m looking forward to park trips without hats and gloves, to walks in the woods, to playing in the garden. I’m looking forward.