The question of breastfeeding

I don’t have a straightforward relationship with breastfeeding. Does anyone? Back in 2013, when I was pregnant for the first time, I knew I wanted to give it a go. And then Joseph was born, three weeks early, and we had to stay in hospital for eight days because my blood pressure was high. The midwives told me to feed him every three hours, but my boy was jaundiced and tiny and all he wanted to do was sleep. Sometimes, it took an hour of dripping water onto his face and tickling his feet for him to wake up.

When he was two days old, a midwife told me he’d lost too much weight and insisted we give him some formula. From a cup rather than a bottle, to avoid ‘nipple confusion’. Paul held him and tried to get him to take some drops of milk, and he looked so small and frail, and I felt like a failure.

Over the next few days, a variety of healthcare assistants spent an incredible amount of time helping me to get it right. One day, a woman spent five hours with me, helping me to hand express and sort out Joseph’s latch. I remember being given a syringe that held one millilitre of fluid; after an hour of hand expressing, it was about half full. The whole process was frustrating, painful and difficult.

By the time we went home, I thought we’d got the hang of it. But the next few weeks held cracked, bleeding and blistered nipples and two bouts of mastitis, during which I felt too ill and shivery at times to get out of bed. But I had to, because I was breastfeeding, so I was the only one who could feed my son.

We got through it, and I ended up breastfeeding for almost eight months. Joseph put weight on steadily, going from the 9th percentile to the 75th sustained only by the milk my body made for him. That felt pretty amazing. It’s probably the thing I’m most proud of in my life, because it was certainly the hardest. So when I found out that I was pregnant this time, I was more worried about the early days and weeks of breastfeeding than I was about the labour. But there was no question in my mind that I’d do it all again.

And then I was diagnosed with breast cancer, and my surgeon asked whether I had any questions. And before I knew I was going to, I asked whether I’d be able to breastfeed, and she said it was unlikely. I felt crushed. I worried that my baby girl and I wouldn’t bond in the same way that Joseph and I had, and I felt like, before she was even here, I’d let her down.

I’ve asked the breastfeeding question of a number of healthcare professionals in the hope of getting a different answer, but it’s looking like it’s not meant to be. One obvious problem is that I’ve lost my right nipple, and the other is that I’ll almost definitely be having chemotherapy shortly after the birth, and the drugs will be present in my milk.

A few weeks ago, I mentioned this disappointment to a friend. She’s currently breastfeeding her daughter, and she immediately offered to pump and freeze some milk for mine. It was completely unexpected, and probably the kindest thing anyone’s ever offered me.

For the first couple of years that I knew this woman, she was growing her hair so that she could donate it to a charity that makes wigs for little girls with cancer. I said that we might have a problem getting the milk from her to me, since we live quite far apart, and she said ‘If I can send human hair for the children, I can send frozen breastmilk for the babies.’

Since, other friends have offered to do the same. It’s hugely overwhelming. I’m looking into the logistics of transportation. I’m also looking into milk banks, which typically provide breastmilk for premature babies.

So, it’s not yet clear how my daughter will be fed. The only thing that seems pretty certain is that she won’t feed from me. It’s still one of the hardest things about this whole situation for me, but I’m coming to terms with it. I know I have to forgive myself for this thing that isn’t my fault. And it’s given me the opportunity to learn just how kind and amazing my friends are, which is no bad thing.

The genetics

Let me preface this post with an apology to anyone with the slightest grasp of biology. For all the mistakes I’m about to make, I’m sorry.

So, because thirty-five is quite young to develop breast cancer and because my mum has also had breast cancer, my surgeon referred me to a genetics team. A few weeks ago, Rachel and I went to see a genetics nurse. She told us that the average woman has roughly a 12% chance of developing breast cancer in her lifetime (I was surprised by how high this figure was). She asked whether we knew anything about BRCA1 and BRCA2 – two genes everyone has which can mutate, pushing the (female) carrier into a much higher-risk category for breast cancer of 80% to 85%. There’s also a higher risk of ovarian cancer and, for male bearers, a higher than average risk of breast cancer and prostate cancer. Did we know anything about that? We said ‘Angelina Jolie?’

We spent an hour or so with this nurse, who was friendly and knowledgeable and kind. She drew us pictures to explain how genes are passed down from parent to child and we talked about Rachel’s and my coinciding pregnancies. It felt a bit like a GCSE science lesson, and a bit like having a chat with a couple of friends.

The upshot was that I was free to have a blood test to determine whether I had either of these gene mutations. If I tested positive, Rachel would have one too, if she chose to. The nurse thought that despite my age and family history, there was probably only a one in ten chance that I would test positive. If I did, I would have to decide whether to have further, preventative surgery; this could involve a double mastectomy and, if I wanted to cover all my bases, the removal of my ovaries, too. She assured me that this could wait until I was sure I’d finished having children. Rachel and I took one look at each other and said ‘We’re done.’

I had the blood test there and then. I’m not someone who would rather not know, particularly when I’m currently carrying a female baby who could also be at risk. The nurse who took my blood asked me to confirm my date of birth and then wished me happy birthday for the following day, and it was a reminder, once again, of how incredible all the medical staff who’d guided me through this process had been.

And then Rachel and I went for lunch, and I put it out of my mind, because the results wouldn’t be back for about five weeks.

This week, we went away for a few days to Center Parcs – Paul, Joseph and me, Rachel, her husband Scott, and their son Louie. Rachel has four weeks to go until her planned C-section; I have nine weeks left until the due date I’m very unlikely to reach. We’re both feeling huge and uncomfortable, having trouble sleeping and suffering various aches and pains. We were ready for a break.

On the morning of our first day, Rachel and I were in a playground with the boys when my phone rang. It was a colleague of the genetics nurse we’d seen. She had the results; did I want to hear them? I did. My mind went back to that appointment, probably the most relaxed and enjoyable one of this whole process. One in ten chance. And then I heard the woman on the end of the phone saying I’d tested positive for BRCA2.

It was a blow. I’d felt like I was making progress, with surgery out of the way and chemo on the horizon. This was a setback. It felt cruel. Over the next couple of days, I caught a bad cold and Paul and Joseph went down with a stomach bug. The heartburn I’ve been suffering for a few weeks got worse and worse. And so, although it was good to get away and we had some really fun moments, it also felt a bit like a disaster.

There will be other holidays, I keep reminding myself. There will be better times. There will be trips that don’t involve phone calls that pull hard at the fabric of my world.

Today, I slept for the whole journey home and still felt consumed with exhaustion for the rest of the day. For a short time this afternoon, I lay on my bed while Joseph drove a fire engine over my body. ‘Is it time to call Fireman Sam?’ he asked. He pulled my dress up, put his head underneath. ‘Can I eat the baby sister?’ he asked. And I laughed, and he laughed, and things felt a little closer to being all right.

The recovery

I had a pretty easy time of it after the surgery. Joseph was at nursery for three days, and my parents were staying with us, and Paul and Rachel were around too. Because I had more help than I needed, Mum and Dad painted our nursery. The next day, they went to Rachel’s house and painted hers.

I didn’t really have any pain. I’d been sent home from hospital armed with painkillers but I only took paracetamol for a day. I did my exercises three times a day. I had naps. I read one of my favourite books, Extremely Loud and Incredibly Close, for the fourth time. I had some annoying symptoms, but it was impossible to know whether they were related to the pregnancy or the surgery. For two days, I felt like everything I ate was stuck in my throat. I had heartburn, constipation, tiredness.

My community midwife visited me at home the day after the surgery to check on the baby. Another midwife had visited me the day before, in the hospital. But I was happy that everything was all right. I’d been told the anaesthetic might make the baby lethargic, but she was barely ever still.

Two days after the surgery, I was ready for a walk. Dad and I collected Joseph from nursery and walked him home. It felt like summer. Joseph stopped to blow every dandelion clock and talk to every dog.

By the weekend, I felt pretty normal. We went to storytime at the library, had a rainy barbecue at Rachel’s and visited our local country park for an emergency services day. Joseph and Rachel’s son, Louie, were happy all weekend. Which meant that we were, too.

And then two difficult things happened. Firstly, a week after the surgery, I removed my dressing. It was hard to look at myself in the mirror. I had one scar under my arm and another right across my breast. They were ugly. I felt less feminine, less attractive, less me. I cried. And then I tried to remember that there are worse things than this. That not removing the cancer would, ultimately, have been much worse.

The second thing happened the next day, when I picked Joseph up from nursery. In his room, there were two groups of children playing. One group was running in and out of a homemade den, and the other was just charging around, shrieking and laughing. Joseph was sitting in a corner on his own, doing a jigsaw. One of the women who looks after him sat down with me and told me he’d been very emotional all day.

When we got home, I asked him whether he’d been sad that day. He said he had. I asked him why. He said ‘Because some of the puzzle pieces were missing.’ Later, in the bath, he said ‘Mummy’s sad’ over and over again. I felt awful. I’d been as careful as I could be about not letting him see me upset, but it obviously hadn’t been enough. And then he got out of the bath and jumped onto his bed, naked and wet, and started laughing, and I remembered that he’s two, and he rarely remembers anything for more than five minutes, and he’s the happiest person I know.

It’s like this, I’m finding. Highs and lows. Guilt and gratitude, sadness and joy. In one melodramatic moment a few weeks ago, I thought, out of nowhere, what if I die without meeting my daughter? It felt unbearable. But I don’t think that’s how this is going to go. And I’m hoping a baby sister will take Joseph’s mind off those missing puzzle pieces.

The surgery

We had to be at the hospital for 7am, which meant leaving the house before Joseph woke up. My parents were staying with us to look after him, and they got up to say goodbye. I was feeling a bit shaky, and Mum and I both started crying when we hugged, so I stepped out of the door and walked to the car with tears streaming down my face. It was a beautiful, sunny morning.

I was nervous. I’d never had a general anaesthetic before, and although I knew how unlikely it was, I was terrified of being awake but unable to alert anyone. Especially because I’d been told they would give me a smaller dose of anaesthetic than usual, because of the pregnancy.

I was allocated a bed and Paul put away some of my things. I was hoping to be back home the same day, but there was no guarantee. A nurse came to ask me some questions, gave me a gown. Paul tried to think of ways to pass the time. ‘Do you want to guess your NHS number?’ he asked. ‘No,’ I told him. ‘Come on, you can do it one digit at a time. The first one’s an even number.’ ‘No,’ I said again, laughing. ‘Did you say two? I’m afraid that’s not right.’

My doctor came round and asked if I had any questions. I hadn’t seen her in scrubs before. She looked very pregnant, all of a sudden. I thought that it must be getting hard for her to do operations. She asked me how I was feeling and I said that I was hungry. I’m pretty sure she bumped me up from second on the list to first, after that, because I was told to change into my gown much sooner than I expected. It was about 9am.

Being wheeled down a corridor in a hospital bed when you’re perfectly capable of walking is a really strange experience. When I was about thirty-five weeks pregnant with Joseph, I was being monitored and the midwives lost track of his heartbeat for a minute or so, and they ran down the corridor with me to get me into theatre (where they found the heartbeat again, and an emergency C-section was called off). This was much more leisurely. The healthcare assistants joked about the bad steering; we talked about supermarket trolleys.

Then it was time to say goodbye to Paul, and I cried again. He told me later that he did too, but I didn’t notice at the time. I couldn’t really hold it together after that, but I remember being pushed into a little room where someone put a cannula in my hand and a man with heavily tattooed arms squeezed my other hand and said ‘we’re going to take good care of you.’

The next thing I knew, I was waking up and two nurses were talking to me, and I was absolutely furious because all I wanted was to be asleep. They asked me whether I was having a boy or a girl and whether I had any other children, and I could barely summon the answers. Still, I must have seemed like I was doing all right, because they wheeled me back to the ward, where I said about two words to Paul before falling asleep again.

As soon as I was awake and a nurse asked whether I felt ready to eat something, I said yes to everything she offered me. It was probably about lunchtime. I took one bite of chicken sandwich and knew I was going to be sick, so I got out of bed and walked towards the toilet, but then inexplicably stopped in the middle of the ward until a nurse came along and guided me back to bed. She brought me a cardboard sick bowl and drew the curtains around my bed, and I vomited several times, but it was all water.

I was hungry enough that I carried on eating anyway, even though it seemed to take about ten minutes to swallow each bite. My throat was dry and sore, but I didn’t have any other pain. When I got up to go to the toilet, I pulled my gown down from the neck and looked in the mirror. My right breast was significantly smaller than my left, but it was covered with a dressing, so that was about all I could see. My doctor had told me she would have to take the nipple off, and I couldn’t imagine how I’d look without it.

I thought I might be able to go home by mid-afternoon, but my pulse was a bit high, so they kept me until about 6pm. I was still feeling quite queasy, so a nurse gave me a cardboard sick bowl to take in the car with me. I remember thinking that if I didn’t need to use it, Joseph would almost certainly decide it was a good hat. I didn’t, and he did.

We made it home ten minutes before bedtime. I heard Joseph shout ‘that’s my daddy!’ from the top of the stairs, and my mum said ‘and look who’s with him’. I peered up at him and he stuck his tongue out at me, and then we went upstairs and read him a couple of stories. He inspected the dressing from where the cannula had been and asked me if I was poorly. ‘A bit poorly,’ I said. ‘But getting better.’

The pre-surgery week

The week before my surgery, the appointments really went into overdrive.

Monday

We saw our obstetrician. This appointment pre-dated the cancer. My pregnancy was being monitored quite closely because I had high blood pressure and eventually developed pre-eclampsia while I was pregnant with Joseph. But so far, my blood pressure had been fine, and things had changed, so we spent a good hour with her talking about the cancer treatment.

It was the first time we’d met this doctor, and I didn’t warm to her straight away. But it didn’t take long. She called me ‘dear’ and had a motherly air, but she got things done, too. At one point, she left the room to see if she could get me an appointment for a growth scan, and five minutes later, I was lying on my back with the ultrasound gel being spread over my belly.

Although surgery under general anaesthetic and chemotherapy are both possible during pregnancy, the timing of the birth was going to be quite critical, because it had to be between chemo treatments. I’d be induced. If the baby was breech or there were any problems with the induction, I’d have a C-section. Nearer the time of delivery, I’d have two steroid injections to boost the baby’s lungs. The growth scan put the baby at an estimated 2lb 12oz, which was about right for the stage of the pregnancy. It also showed that she was breech, but she had a good few weeks to turn.

Wednesday

We were back with the breast surgeon to get the results of the fine needle aspiration. No mischief. She thought the swelling detected on the MRI was probably a result of the biopsy. We followed this appointment up with my pre-surgery assessment. A nurse took us through what to expect on the day of the surgery: what time to arrive, what to do and not do beforehand, what to bring.

She told me I couldn’t eat anything from midnight the previous day until after the surgery. Several times, she said ‘I’m sure they’ll put you first because you’re pregnant. Has nobody told you you’ll be first?’ Nobody had. But I hoped she was right. Every morning, I woke up starving.

We also saw a breast care nurse, who took me through the exercises I needed to do after the surgery and explained a bit more about the procedure. She gave me that look that everyone gives me, now. A bit incredulous, and sorry.

Thursday

The obstetrician had phoned me and said that, because there was a small risk of the surgery kick-starting labour, she thought we should do the steroid injections that week. I had the first one on Thursday afternoon. When I told the midwife that I was due to have my anti-D injection (given at 28 weeks of pregnancy, depending on the mother’s blood type) the following day, she offered to do that too, so it was ‘one more thing out of the way’.

Friday

On Friday morning, I was supposed to have my whooping cough injection, but I ended up having to cancel it. I just couldn’t fit everything in. Instead, I had the second steroid injection, and then we waited around for a while because our obstetrician wanted us to talk to a paediatrician while we were there. My bum was numb from the injection, so I paced up and down the room a bit. I had my book but I couldn’t settle down to reading.

When the paediatrician arrived, he talked us through what would happen if my surgery did send me into labour. The hospital where I was going for the surgery doesn’t have a baby unit, so he said I’d be taken by ambulance to the right hospital. Unless it all happened really quickly. He told us that she would need to go on a ventilator, that she’d be fed by tube for several weeks.

As we talked it all through, it started to seem like something that was really going to happen. I had to keep reminding myself that the chance of it was small. I asked what the survival rate was for babies born at 28 weeks, and Paul told me later that he hadn’t wanted to hear the answer. But we were told it was about 95%, which was higher than either of us expected.

During the conversation, our obstetrician arrived. Like magic, she produced a midwife and an anaesthetist to talk to us. She gave us her mobile number, asked Paul to call her when I went in for the surgery, so that she could arrange for a midwife to come to that hospital to check the baby afterwards.

The things we were talking about were terrifying, but I felt so lucky to be being looked after this well. I couldn’t believe how various teams and individuals were communicating and coordinating my care so seamlessly. It was the week of the junior doctors’ strike, and I genuinely don’t think I could have been better taken care of.

Everyone wished us luck, shook our hands. I had an appointment to see the obstetrician again in a couple of weeks. I told her I hoped to make it and to still be pregnant, and she smiled kindly. It felt momentous, somehow. None of us knew how the next few days were going to go. But next time we saw each other, things would have shifted.

The telling

One of the first things I thought after getting my diagnosis was, I have to tell my family about this. My parents and my sister, Rachel, knew I was going in that morning to get the biopsy results, so I knew they’d be waiting for a message to say that everything was ok. We decided to call at Rachel’s house on the way back from the hospital, and all the way there, I tried to come up with the right words to tell her. And I couldn’t. But when we got there, she opened the door and I didn’t have to tell her anything. She just knew.

I phoned my parents’ house once we got home. Dad picked up. I said ‘I’ve got cancer.’ I don’t remember the rest of the conversation. I was thinking about how I’d feel if it was Joseph. There are things that are harder than being the one who’s ill.

Once my family knew, I wanted to tell everyone. I sent messages to a few friends, then more. I couldn’t stop. I just wanted everyone to know, so the telling part could be over. But it’s never over. Since then, I’ve told people every day. The women who work at Joseph’s nursery, someone who was giving me a massage, the people I’m doing freelance writing work for. Nurses, midwives, receptionists.

The good thing about the telling is the incredible support it’s led to. I’ve had cards, flowers, endless thoughtful messages. A mindfulness book, a Wonder Woman biscuit. Friends with young children of their own and no free time have offered to come, to help. Rachel, who’s also pregnant, brought her maternity leave forward to spend time with me. I’ve been touched by the kindness of the people I love every day.

Now that the surgery is imminent, I’ve been trying to tell Joseph. I want him to understand that I won’t be able to pick him up for a while, but we’ll still be able to cuddle. He seems to grasp it when we have the conversation, but when I bring it up again, it’s gone. He’s just learned The Very Hungry Caterpillar by heart, and it’s taking up a lot of space in his little head.

He reaches his hands up above his head, puts them on my bump. ‘Carry carry,’ he says. And even though he’s heavy and it’s getting hard to carry him anyway, I do it. ‘Remember I can’t carry you next week,’ I say. He tilts his head to one side, looks serious. ‘No,’ he says. And then he asks for a snack or a story, and forgets again.