The double mastectomy

A few days before my surgery, I had to go to the hospital for my pre-op assessment. Paul was doing his final work trip to London for about a month and my parents were looking after Joseph and Elodie, so I went on my own. I didn’t have any qualms about it. But then I saw the breast care nurse who I saw just before my lumpectomy, and she asked me to fill her in on what had happened since. And somewhere in the middle of telling her all of it, about finding out I was BRCA2, about Elodie’s birth and how close we came to losing her, about the chemotherapy, about Rachel’s stroke, I just fell apart. And I sobbed and sobbed and sobbed.

I don’t know how much of it was the recapping of what’s happened, and how much was the dawning realisation of what was about to happen, but I think I needed to break like that, and I’m glad it happened there. The nurse did so many important things for me that afternoon. She listened to it all. She got my surgeon to agree to keep me in hospital for a few days after the operation so I could rest. She phoned my GP and made me an appointment to talk about whether I would be a good candidate for counselling or anti-depressants. And she told the car parking team that they mustn’t give me a ticket, despite me going over my allotted time by three hours.

There followed a rough couple of days, in which we were all ill. Joseph was sent home from nursery; Elodie wasn’t sleeping. I longed for the surgery day to come, because all I wanted to do was lie down. And when it did come, Paul and I got in the car at 6.30am as Joseph and my mum used a torch to investigate all the dark corners in the house and my dad held Elodie in his arms. I was strangely calm.

I was shown to my own room, which I didn’t expect, and we were looked after by a health care assistant. When we were talking about our children, she said ‘My gran used to say, when they’re little, you could eat them, and when they get to eighteen, you wish you had.’ She measured me for surgical stockings, brought me a gown. And then the surgeon came and drew all over my chest with a marker pen. I was first on the list, he told me. I wouldn’t have long to wait.

Despite it being a much bigger operation, I wasn’t as scared as I’d been last May, when I had my lumpectomy. I was getting used to this, to how it worked. I was no longer worried about waking up mid-surgery. I expected to be sick after I came round. The unknowns were fewer. I was wheeled down to the operating theatre on my bed and I had to say goodbye to Paul in the exact same spot at the first time, and I barely cried.

The next thing I remember is being violently sick and unable to move. I think there were a lot of people around me. They wiped my skin and fetched bowls for the vomit. I remember being told I was soaked with sweat, that my skin marked very easily. And then nothing. And when I woke up properly, I carried on vomiting for hours, every time I moved. I felt like there was a very heavy piece of furniture sitting on my chest. It was worse than I’d imagined. Harder. Paul came to see me and the surgeon called by to tell us it had all gone well, and I couldn’t summon the energy to look at him. In the middle of the night, a nurse helped me to clean my teeth. I remember thinking that I couldn’t imagine recovering from this, couldn’t imagine feeling normal again.

My operation was on a Thursday, and I was kept in until the following Monday, but I had to move to a different ward because the breast ward closed at weekends. I spent the weekend on a ward with two other women, and Paul brought Joseph to see me one day and Elodie the next, and I remembered that I had so much to get better for. But I was in a lot of pain, and I couldn’t sleep, and I still felt that I was being slowly crushed and I had four drains to carry around with me and I was on strong painkillers that made it almost impossible for me to read or concentrate on the TV.

And then on the Monday evening, I was sent home. I sat beside Joseph on the sofa while he watched Paw Patrol. We held hands and he told me he’d missed me. ‘I have to be very careful with you,’ he said, his voice serious. ‘But you’re not too poorly, are you?’ I assured him that I wasn’t. ‘Can I see your poorly?’ he asked, and I pulled my top down to show him my dressings, but he’d already forgotten and was looking at something else.

Elodie’s still poorly, still not sleeping. And it’s awful to lie in bed at night hearing her cry, feeling completely helpless while Paul or his mum try to soothe her. This morning, I felt inside her mouth and her first tooth had broken through, so I’m hoping there might be a little more peace now. As I write this, the house is quiet. Paul’s mum has taken Joseph to a farm park; she’s sent us a photo of him holding a guinea pig that he wanted to call Horse. Paul and Elodie are having a nap together upstairs.

And I’m free to read or write, I have the time I’m always desperately wishing for, and I don’t really want it. There’s still some pain, and I still can’t get comfortable to sleep, and I feel pretty miserable about it all. But I shouldn’t, because the post lady keeps bringing thoughtful gifts from kind friends, and Paul’s mum bought me an enormous tub of pick and mix and Paul keeps bringing Elodie to me for cuddles. And because I’ve done it. I’ve taken the final difficult step. And now I just have to get better.

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The mastectomy build-up

I decided a while back that when I had my double mastectomy, I wanted to have reconstruction using tissue from my tummy. It’s a big operation with a long recovery time, but I didn’t like the idea of implants or of having no reconstruction at all, and that’s what I was left with. I had a consultation with a breast surgeon and a plastic surgeon to discuss it, as both teams needed to be involved.

The appointment was odd. I had to strip down to my underwear and the plastic surgeon walked around me and grabbed various parts of my body to see whether I had enough tissue to spare. Tummy, thighs, bum, back. I could see that he was looking at me not as a person, but as a puzzle he was trying to solve. If we just move this bit to here… That kind of thing. He decided that, with my extra baby and chemo weight, I had roughly the right amount of tissue for the reconstruction. He wrote a letter to my oncologist, stating that I had a ‘reasonable abdomen’.

The next time I saw him, I was expecting him to check me over and talk me through the procedure again. I thought I might even get a date for the operation. Instead, he said he’d decided he wasn’t happy to do it while I was less than a year post-partum. I was stunned. I’d given this decision a lot of thought, and I believed that everything was in place. I felt like something had been snatched from me.

I saw another breast surgeon, my fourth. He talked me through the implant options, and we settled on expanders. These are part silicone and part saline. After the initial operation, I will go back to the clinic every week or two and they’ll pump a bit more saline in until I’m happy with the size and shape. Everyone I tell about this thinks it’s hilarious, no doubt imagining me going back again and again until I have comedy inflated breasts. But I’ll be sticking with a fairly modest size. I’ve never wanted big boobs. I guess this opportunity is pretty wasted on me.

So once the decision about reconstruction had been made and remade, I was given a date. It seemed quite a while away at the time, but now, all of a sudden, it’s next Thursday. For reasons that I don’t really know, I’m going to have two breast surgeons working on me, one on each side. This means it’ll all be over quicker, which is good news for Paul and my family, who will be waiting to hear that I’m safely out of theatre. A few people have asked me whether I’m nervous. I’m not, really. I’m sure I will be on the day, but I’m so clear about this being the right thing to do that it just feels like an inevitable hurdle. And hopefully, the final one.

I do wish I could talk it all over with my sister, though. She’s always been my go-to confidante. I know that, if she could, she would be sympathetic, and kind, and do all kinds of practical things to help during my recovery. Cooking us meals, looking after the children. I still have a portion of chilli in my freezer that she made in the run-up to my first breast operation. I wish I didn’t have to do this without having her by my side.

Every few weeks, I dream about Rachel. In these dreams, the stroke has happened but I visit her to find that she’s completely recovered. I used to wake up and realise that they were just dreams, and be devastated anew, but I’ve come to look forward to them. To meeting my sister there inside my mind, away from the horror and sadness that currently cloud our lives.

I remind Joseph all the time that I’m going into hospital and will be away for a few days. ‘Will you be able to run afterwards?’ he asked me, today. ‘Well, I can’t really run now,’ I said. He seemed happy with this. Things are good in his world. He’s moving up to pre-school at nursery, his sister is getting closer and closer to being able to properly play with him and he’s seeing an awful lot of all his beloved grandparents. I’m sure he’ll barely notice that I’m gone. And when I get back, and I’ve recovered, I’m hopeful that we can close the door on cancer for good.