The second chemo

A couple of weeks passed. Things were a mess and we were just about coping. Each day, there were logistics to deal with. Who was visiting Rachel in hospital? Who was looking after the babies? Who was taking the older boys to nursery and picking them up? Friends (mine, Rachel’s and my parents’) had descended, bringing food and offering to hold newborns. Everything felt chaotic and unsustainable. But cancer doesn’t care about any of that, and it was time for my second dose of chemo.

Paul came with me this time. He’d missed the first one because he was up in Sheffield with Elodie. I wasn’t nervous; the side effects I’d been dreading after the first round had never materialised. I’d been tired, but I had a new baby, so that was hardly unexpected. We settled in. I was ready to get another one ticked off. But then one of the nurses accessed my port to take blood, and I started to feel really strange. Dizzy and spaced out. I’d been on medication for high blood pressure since Elodie’s birth, and it seemed it had done its job a little too well. My blood pressure was alarmingly low. A doctor was called in and I was told to drink as much water as I could.

I recovered quickly, and the doctor and my oncologist were happy for the chemo to go ahead, but it was a stark reminder of how easily this whole process could be derailed. I was moved to a room with a bed so I could get more comfortable, and the cold cap was fitted. Things went smoothly from there.

A week later, however, I’d developed a nasty sore throat. I’m supposed to report any illness to my chemo team, so I phoned them and they asked me to come in. I had tonsillitis, and I was sent home with antibiotics. Three days after that, I was suffering with terrible stomach cramps and diarrhoea. It was late on a Friday evening, and I didn’t want to call, because I didn’t want to go to hospital. I stayed in the bathroom, in tears, while Paul called for me. Half an hour later, my parents had arrived to look after Joseph and Elodie, and we were on our way in.

A blood test revealed that I had dangerously low neutrophils (a type of white blood cell), which meant I was very susceptible to infection, so I was kept in. It ended up being a three-night stay. I’d really wanted to avoid being admitted to hospital, because I couldn’t bear the thought of my parents having to visit two daughters in two hospitals at the same time, but there was nothing I could do about it. On the Sunday, I asked Paul to bring the kids in to cheer me up. ‘I’ll bring one of them,’ he said. ‘Which one do you prefer?’

I’d reached out to a charity called Mummy’s Star, which supports women who are diagnosed with cancer during pregnancy or in the first year of their child’s life. Pete, who runs the charity, happened to call me while I was in hospital. He asked me some questions about my situation and, as I tried to fill him in, we were cut off several times. ‘Shall I come to see you at home?’ he asked. I was astonished. I’d reached out to a number of organisations seeking help, from social services to cancer charities, and each one had suggested I contact someone else, and I’d pretty much given up.

A couple of days later, Pete turned up on my doorstep and spent a couple of hours listening to the story of what had happened to my family. I told him about the cancer, about Elodie’s birth and subsequent health problems, about Rachel’s stroke. It was cathartic, telling it all like that. He talked to me about the ways in which his charity might be able to help me; financially, emotionally. But, in truth, he’d helped me enormously already, and I’ll always be grateful for that.

The run of health problems continued in the week that remained before my next dose of chemo. I was back and forth to the hospital with various minor problems. I thought my port was infected. I thought I had cystitis. Both of these turned out to be false alarms, but it was all so tiring, and I believed it was a sign of things to come. I had four more rounds to go, and it was probably going to get worse.


The tragic twist, part two

In my last post, I detailed the day of my sister Rachel’s stroke. What I didn’t explain is that, for many years, my sister has neatly doubled up as my best friend. She’s the older one, so I’ve never lived without her (and I never wish to). But we weren’t always close. As teenagers, we struggled to find common ground. We couldn’t agree on anything. We irritated one another. We walked past each other at school without acknowledging that we were acquainted, let alone related.

I remember one argument very clearly. She was standing on the stairs of our house, looking down, and I was standing in the hallway, shouting up. ‘You got to be clever,’ she shouted. ‘But you got to be pretty,’ I shouted back. Her: ‘You got to be tall.’ Me: ‘You got to be thin.’ I imagine how we’d continue that argument now. Her: ‘But you didn’t have a stroke.’ Me: ‘But you didn’t get cancer.’

And then, when I was sixteen and she was eighteen, our family moved from Cheshire to Worcestershire and we knew no-one but each other, and we spent a long, hot summer lying in the garden, becoming friends. We’re still very different. She is gentler and easier to love than I am. But over the past couple of decades, we’ve discovered what we mean to each other. Me moving to New York for a time helped with that. Both of us becoming mothers did, too.

And so, what happened next was enough to make me want to curl up in bed and not get out for days and days. But I had a baby and a toddler to feed and care for. And I had a battle with cancer to win.

The morning after Elodie’s homecoming and Rachel’s stroke, Mum called and asked whether I could take Louie to nursery. ‘I’m at Rachel and Scott’s with both boys,’ she said. ‘I’ll explain when I see you.’ I was a bit dazed from tiredness after our first night with Elodie, so I just agreed, pulled on some clothes and headed over there in the car. When I got there, Mum tried to fill me in without letting Louie hear. Rachel had deteriorated overnight. She’d been moved to a different hospital in Nottingham. She’d had another bleed. They were going to operate. Scott and Dad were with her.

I dropped Louie at nursery and went home, but Paul said he could look after Elodie and that I should go to be with Mum and Jay. Mum had asked her friend Lyn to come over because she didn’t want to be on her own. Lyn has known Rach and me since we were born, and when she arrived and I answered the door, she gave me a long, comforting hug. Jay slept well that morning, and Mum, Lyn and I waited for news.

Eventually, Dad phoned. They hadn’t cleared all the blood with the first surgery so they were going to have to operate a second time. Dad said that him and Scott were going to come back to pick me and Mum up, if we could leave the babies. ‘Have they said anything about her prognosis?’ I asked. ‘They have,’ Dad told me. ‘It’s very serious. I think you should come.’

Lyn agreed to look after Jay, and we all went to my house, so that Paul and Lyn could look after the two babies together and have some company. When Dad and Scott arrived, Dad told us more about what the surgeon had said. The only part I remember clearly is that they didn’t know whether or not they could save her. A couple of minutes passed with us all there in the lounge, some of us sitting, some standing. We hugged each other. We cried. And then we went to the hospital and waited for strangers to tell us whether they’d managed to save her life.

Time stretched and stalled in that intensive care waiting room. I messaged a group of close friends, told them I didn’t know whether I could bear it. When someone switched on the TV to watch Wimbledon, I wanted to scream. We came and went, going to the toilet, getting hot drinks, pacing.

My parents and I spoke to a nurse called Lauren who had been looking after Rachel. She explained how serious Rachel’s situation was and said that paralysis of the left side was almost certainly the best we could hope for. Mum said ‘She’ll never be our Rach again’. And Dad said ‘She’ll always be our Rach.’ And both were true, somehow.

Eventually, we were told she was out of theatre and we could see her. I stood up and Dad took hold of my arm. ‘She doesn’t look much like herself,’ he told me. ‘Don’t be alarmed.’ It would have taken me a while to recognise her if we hadn’t been led to her bed. Half of her head had been shaved for the surgery, and her breathing tube pushed her mouth wide open and changed the shape of her face. There were tubes and wires everywhere. ‘I was supposed to be the one who lost my hair,’ I said, holding her hand.

Rachel’s nurse, Lauren, gave me a hug as we were leaving. She promised to take care of her. ‘She’s the best one of us,’ I said.

A month earlier, I’d never set foot in an intensive care unit. And now, two of the people I loved most in the world had ended up in one. I started crying and I couldn’t stop.

And I couldn’t see how I would ever stop. Time and again, I’d believed that things couldn’t get any worse, and yet they had. What was next for our family? How would we manage it all, both physically and emotionally? We had two newborn babies to look after, as well as two energetic boys. Chemo. Hospital visits. And alongside all the practical stuff, there was this boundless sorrow to carry. And all the time, it was getting heavier.

The tragic twist, part one

After eleven days in Sheffield, Elodie was transported by ambulance back to a hospital in Leicester. And Paul drove home. It was almost strange to have him there, after what had seemed like such a long absence. Once we’d confirmed that Elodie had arrived, we drove to the hospital to visit her. She was in a huge room with just a few other cots around its edge. She looked settled and happy. The nurse looking after her showed us around. It felt like we were a big step closer to getting her home.

Over the next few days, Paul and I took it in turns to spend the morning with her; the other one coming in for a short visit with Joseph and Paul’s mum in the early afternoon. On his first visit, Joseph looked at her, stroked her and kissed her a few times, then pointed to another cot and said ‘Can we see that baby now?’ I think he thought we could choose which one to take home.

On one of those afternoons, we gave Elodie her first bath. The nurse said she would probably scream when we lowered her into the water, but she didn’t make a sound. And she stretched out her long legs, which had been scrunched up, frog-like, since she was born. I saw how long she was, despite her low weight.

Elodie wasn’t on any medication or monitoring by this point. We would be free to take her home as soon as she put on some weight. So every time we fed her, we tried to get her to take as much milk as possible before she fell asleep with the effort of it all. And every time we left her, we willed her to grow in our absence. We were close now; we could feel it. We believed that things were going to be all right.

One evening, I asked Rachel if she wanted to come in with me to visit. She hadn’t seen Elodie since the day she was born, when she looked – and was – very poorly. I knew my sister was desperate to see her new niece again, but she’d been busy with her own baby and recovering from her C-section. She jumped at the chance to come with me, so I picked her up and we made our way to the hospital.

It felt like ages since we’d had a proper conversation, because things had been so hectic and we were both getting used to being new mums again. We caught up on that journey, talking non-stop. I felt like I’d got back something I hadn’t realised I was missing.

When we arrived at the hospital, Elodie was sleeping. I picked her up and put her in Rachel’s arms and watched the two of them together. I thought about how much Joseph loves my sister, and felt privileged to see the start of this new relationship.

All in all, it was a lovely evening. But on the way home, Rachel told me she had a terrible headache. Neither of us had any painkillers with us, but I had a bottle of water. She sipped from it, clutching her head in her hands. I was worried, but she told me she would be all right, and we finished the journey in silence.

When we were a minute or so from her house, we came across a fire engine in the middle of the road, and one of the firemen signalled for us to turn around and go back. The only other way to get to her house involved going back on the dual carriageway we’d just left. I could see that Rachel was in a lot of pain, and I got her home as quickly as I could. Shortly after, she sent me a text saying she was in bed and had taken painkillers and that she loved me.

Two days later, Paul’s phone rang at 4.30am. I heard him say that we would come straight away, and when he hung up, he told me that it was Scott. He told me that Scott thought Rachel had had a stroke. That he was waiting for an ambulance, and needed us to look after the boys so that he could go with Rachel to the hospital. We got dressed and Paul woke his mum to tell her where we were going and ask her to look after Joseph. We arrived at Rachel’s house five minutes after the call, and the ambulance was there, about to leave. Scott jumped in and we went into the house. I picked up Jay and held him close, because it was as close as I could get to holding my sister.

Something in all the chaos must have disturbed Louie, because we heard him call out a couple of minutes later. Paul went up to him and told him that his mummy was poorly and his daddy had taken her to see a doctor. Louie likes to have his back rubbed to help him go to sleep, so Paul tried that and then came back downstairs. A few minutes later, we heard him call out again. I passed Jay to Paul and went upstairs. ‘Do you want me to rub your back?’ I asked. ‘Paul tried that, and it didn’t work,’ he said. And so I sat on his bed and we read stories and he asked me questions about Star Wars that I couldn’t answer, and we waited for morning to come.

Paul took Louie to nursery when it was time. He’d also phoned my parents, who’d gone back home to Worcestershire about twelve hours previously after staying for the two weeks that had involved the births of their two new grandchildren and my first chemo session. By the time they arrived, Scott had phoned me to confirm that Rachel had had a massive stroke, and I told my parents that while they stood just outside the house, and the three of us held each other in a hug that didn’t quite work. Paul sent us off to the hospital, assuring us he’d be all right with Jay. And we drove there, saying very little. There was very little to say.

We phoned Scott when we got to the right ward, and he came out into the corridor and my mum hugged him and he sobbed. Only two people were allowed to be beside her bed, so we took it in turns. She was asleep, mostly, but now and then she would say a few words. She asked, repeatedly, for a cold compress. She asked Scott to run her a bath. She said that she needed to take her pain medication.

I thought it was going to be all right. She didn’t look like her face had fallen and her voice wasn’t slurred. The medical team didn’t seem to be concerned about her in an urgent way. They told us that we had a long recovery time ahead of us. Probably months rather than weeks. It was terrible, but it wasn’t devastating. Not yet.

Because we couldn’t all be in there at the same time, Mum and I crossed the hospital to see Elodie. The neo-natal nurses said that she could finally go home, and I was given her discharge letter. A doctor talked me through all the things that had been wrong with her, and it was a sharp reminder that we’d been very lucky. I called Paul, and he said he would head in so that we could bring her home. I went back to Rachel, to say goodbye. I held her hand. ‘I have to go,’ I said, ‘because we’re taking Elodie home.’ Immediately, she responded. ‘Good.’ ‘I love you,’ I told her. ‘I love you too,’ she said.

And so, we took our little girl home and photographed her and opened the presents that had been accumulating since her birth, which I’d refused to open until she was home with us. When Joseph came home from nursery, he was delighted. ‘My baby sister isn’t in the hospital any more,’ he said. ‘She’s at home!’ It was bittersweet. It should have been a time of pure happiness, but I couldn’t shake the sorrow I felt about Rachel. The worry and the fear were strong, and they overshadowed everything else.