The first chemo

As Elodie turned one week old and there was no sign of her or Paul returning from Sheffield, my mum stepped in to accompany me to my first chemotherapy session. It was a big day for our family. I had to be at the hospital for 8.30am and could expect to be there for most of the day. Meanwhile, my sister Rachel was at a different Leicester hospital, waiting for her planned (but postponed from the previous Thursday) C-section.

A nurse called Kate showed us to a small, private room with a bed for me and a comfy chair for Mum. She talked us through various things, like side effects and the chemotherapy infusion itself. The first step was to have a port surgically inserted by my collarbone. My oncologist recommended this as the way for the chemo to be administered, because the drugs can be very tough on the veins.

And so, seven weeks after my lumpectomy, I was lying on my back in an operating theatre again. Only this time I wasn’t going to be knocked out. Kate stood next to the bed and held my hand throughout the procedure. The surgeon explained everything he was doing as he did it, and in between, he hummed merrily. I was nervous, but it wasn’t too bad. Everyone in the theatre said I was a model patient. I said I thought all patients should be made to give birth a week before having the procedure to put the pain in perspective.

As Kate and I made our way back along the corridor, I wondered fleetingly whether Rachel might have been in theatre at the same time as me, but when we got back to our room, Mum confirmed that there was no news. I thought about what a tough day it must be for her, with both her daughters in hospital. She didn’t show it.

I’d decided to try wearing a cold cap, which is intended to minimise hair loss, throughout my chemo. There are no guarantees, of course, and I’d heard a lot of people couldn’t tolerate it, so I just planned to give it a try and see what happened. Kate fitted it to my head and turned it on, and I got a headache immediately. I’m stubborn, and I didn’t want to give up too soon, but part of me was thinking about how annoyed I’d be if I put up with this for every long session and lost my hair anyway. But then, after ten minutes or so had passed, I must have gone numb, and the headache disappeared, so I stuck with it.

The infusion was made up of five large syringes of drugs and took about an hour and a half. Mum and I ate huge portions of cottage pie followed by maple syrup pancakes. And afterwards, I felt suddenly exhausted, and I dozed off for a while. I’d taken my book with me, but I couldn’t settle to it. And then it was over (although the cold cap had to stay on for another hour). One down.

Before we left, a pharmacist came in with a huge bag of medication for me to take home. She went through each item patiently, explaining which I should definitely take and which they were just giving me in case I experienced certain side effects. She explained that I would have to inject myself every day to reduce my risk of blood clots, and I ignored the part of me that protested. I’ve always thought that I could never inject myself, but I’m learning that I’m stronger than I thought I was. I did my first injection under Kate’s supervision in that room, and it was fine. Now, a few days later, I can do it in the few seconds that Joseph’s back is turned, so he doesn’t see.

After about seven hours, it was finally time to go home. We still hadn’t heard anything from Rachel. We wondered whether she’d be sent home and asked to come back the next day. It was a shame, really; we could have done with some good news just then. And we did get it, just a little later. I’d put Joseph to bed by the time the message came through that Rachel’s second son, Jay, had been born late that afternoon.

In the days following the chemo, I waited for the side effects to kick in. I expected to be incapacitated. To be vomiting and feverish and too tired to get out of bed, but none of that happened. I took Joseph to playgroup, I visited my perfect new nephew in hospital and back at home, I made two trips up to Sheffield to see Elodie and Paul, and I waited. Four days have gone by and I’m still feeling fine. I’ve been told that the effects are cumulative, so I might just have got off very lightly this time. Or it could still be on its way.

Four nights this week, Joseph has told me at bedtime that ‘someone is poorly, someone is hurt.’ I tell him that everyone is fine and he denies it, shaking his head furiously. ‘It’s Mummy,’ he says. ‘It’s Elodie.’ I reassure him that I’m ok, and then we go through everyone we know and love until he’s sure none of them are hurt. ‘It’s my train,’ he says, then. ‘It’s my teddy.’ I wish I could put his mind at rest, or at least understand how he thinks.

Elodie is getting stronger every day. She’s been moved from intensive care to high dependency to special care. Today, my parents held her for the first time and we were allowed to take her out of the hospital for an hour. The nurses lent us an enormous Silver Cross pram that had been donated to the hospital, and we wheeled her around the park. She didn’t open her eyes once, but if she had, she would have seen sunshine, and ducklings, and two very grateful parents looking in at her.

 

 

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The longest week

Monday

No day should start at 3am with the onset of labour and end twenty-two hours later with you being wheeled down a corridor to say goodbye to your newborn daughter, who is being transferred by ambulance to an intensive care unit at another hospital. But last Monday did, for me. It feels like a decade ago.

After the birth, and the separation, Paul and I waited. Several midwives and doctors came in at various points, expressed surprise that we hadn’t been told to come to special care to see Elodie, disappeared to find out what was going on and never returned. Paul was worried, but he’s always worried. I didn’t suspect that anything was terribly wrong; perhaps I wasn’t quite back to myself after giving birth. I had a long shower and a short nap, and we waited some more.

At some point in the middle of the afternoon, a nurse came to take us to the special care unit. On the way, she explained some of the things that were happening, to prepare us. Elodie was in a ventilator, she told us. There were a lot of tubes. Oh, and she looked like she was shaking, but it was just the type of ventilator they were using. We went in and sat beside her, and a doctor explained that he’d been called over from Leicester’s other, bigger hospital to look after Elodie. He said that she’d been coughing up blood and he didn’t know why. He said that she might have to go on blood pressure medication and explained that that only happens with babies who are ‘very sick’. He said that she couldn’t be given the care she needed at that hospital, and that she would have to be transferred, but they were currently struggling to find an intensive care cot for her.

Paul and I cried and held hands, and then we went back to the room where I’d delivered her. Paul went home to see Joseph and my mum and Rachel and Scott arrived to visit. I was a mess, but I still didn’t quite grasp how serious it all was. If it was really bad, I kept telling myself, they would encourage us to stay with her, to sit beside her cot.

A little later, a midwife discovered that I had high blood pressure. During my first pregnancy, I had high blood pressure before and after delivery, and Joseph and I stayed in hospital for eight days after his birth while the doctors found the right balance of medication to get it under control. This time, things had been fine throughout the pregnancy, so I was a bit surprised by the high reading, but not too concerned. I felt fine. Paul brought his mum and my dad to the hospital to meet Elodie, and I sat on my bed, a blood pressure cuff on my arm that went off automatically every five minutes. We were finally told that a cot had been secured for Elodie in Sheffield, and that she would be transported that night.

Soon after everyone left, I started to feel cold. I turned off the fan the midwife had put on. But within a few minutes, I was shivering uncontrollably, and I had sharp pains just under my ribs. I got into bed, pulled the covers over me. But I couldn’t stop shaking, so I buzzed for a midwife. Kara was looking after me that night. I had a temperature, so she stripped off my blankets, turned the fan on and pointed it at me. She put me on a paracetamol drip. Very quickly, I started to feel a bit more comfortable. A doctor came in to see me and explained that they were worried I might be developing pre-eclampsia, which can happen shortly after the birth as well as before it.

It was past midnight, and I was exhausted. I was just drifting off to sleep when Kara came in and said that Elodie was about to leave. I got in a wheelchair and she pushed me to the special care unit, where I talked to the doctor and nurse who were travelling with her. I looked at her through the glass. In addition to all the tubes and wires, she was wearing a tiny harness for the journey. I said goodbye to her and let Kara push me back to my room, too shattered and sad to speak.

Tuesday

Paul drove up to Sheffield early to be with Elodie. The news from up there was that her blood pressure was still a major concern and they were planning to do scans on her heart, brain and kidneys. I spent the morning in bed. Because of my blood pressure readings the night before, I’d been checked every half an hour through the night, so I was still exhausted.

At one point, the obstetrician who had taken such good care of us throughout my pregnancy came to see me. She told me that she doesn’t normally get so involved with her patients, but that she’d spent the whole previous day feeling sad about our situation. When she got home, she said, she had phoned her family and friends and asked them to pray for Elodie. I was so moved by her sincerity. She asked me to keep her updated and to send photos once we were all back home.

In the afternoon, my mum and Paul’s mum brought Joseph to visit me. I showed him how to move my hospital bed up and down and we walked hand in hand up and down the corridor, and my heart felt a little lighter. When it was time to go, I walked them to the door and said goodbye. ‘Come home,’ Joseph said. ‘You come home.’ And later that evening, I did. Rachel picked me up and I made it home just before Joseph went to bed. Paul’s dad had spent the day in Sheffield and had brought back some printed photos of Elodie, so we gave one to Joseph. ‘Oh,’ he said. ‘That’s the baby sister.’ And he kissed it, and then we put it on top of his wardrobe, so that he could see it from his bed.

Wednesday

Wednesday was a fairly good day for Elodie. Some of her medications were reduced and she responded well. Paul’s parents went up to Sheffield to see her. I’d been advised not to travel up there until my blood pressure was more under control; I was monitoring it at home. Paul was allowed to kiss her and change her nappy. She was finally allowed to start eating, and I was delighted that Sheffield had agreed to her being given donor breast milk.

In the afternoon, Mum drove me to the private hospital where I’m going to have my chemotherapy. I had blood taken and a nurse and my oncologist explained some of the side effects the treatment would likely have. I realised that, although I’d thought about the fact that I’d lose my hair, I hadn’t looked into getting a wig or a headscarf. Suddenly, it all felt very real and imminent. I’d been so caught up with Elodie’s struggles that I’d forgotten about my own. Side by side, they felt like a lot to deal with.

Perhaps unsurprisingly, my blood pressure was very high again that evening. I called the hospital and they asked me to come in and bring an overnight bag. I’d been hoping to go to Sheffield the next day and I was crushed. I hadn’t unpacked my bag since coming home the previous day, so I just went through it and took out all of Elodie’s things, and when I put them in her room, and saw all the clothes and the cot waiting there for her, my heart broke a little. My parents drove me to the hospital and we spent a couple of hours there, until long past midnight, but eventually I was told I could go home. The community midwife would visit me at home the next day.

Thursday

My mum and Paul’s dad went up to Sheffield to see Elodie and Paul. I hadn’t seen either of them since Monday, and I ached for my little girl. It’s common to feel low on the third day after the birth, and I did. I felt like a terrible mum. Because I still wasn’t very well, Paul’s mum was looking after Joseph with very little input from me, and Elodie was miles away, only days old and having a tough time of it. My milk came in, and I didn’t have a baby to feed, and I felt sore and uncomfortable, especially when I cuddled Joseph.

The midwife came round and, in consultation with a midwife at the hospital, doubled my blood pressure medication. I decided that I would go up to Sheffield the following day if it was under control in the morning.

Friday

I took five blood pressure readings, and one of them was under the threshold I’d been given, and so I decided I was finally going to visit my baby girl. If anything was going to calm me down, I thought, that would do it. The journey takes about an hour and a half, and my parents drove me up there. They dropped me by the hospital entrance and went off to find parking, and Paul met me and took me to the intensive care unit. It was just as wonderful to see Elodie again as I’d expected. She looked a little better than she had on Monday, although there were still wires and tubes everywhere.

That day, she was taken off the ventilator and started breathing on her own, which was a big step forward. But it was also the first day that someone explicitly told me that Elodie had been in critical condition on Monday. I think by that point I’d realised that, but it was still a shock to hear a nurse say it out loud.

Saturday

I went up to Sheffield again, this time with Paul’s mum and dad and Joseph. I was worried that Joseph would find the intensive care unit scary and intimidating, but if it bothered him, he didn’t show it. He looked in at Elodie, asked where her eyes and her tummy were. I’d thought a lot about the two of them meeting, and I hadn’t expected it to be like this, through glass. But they’ll have a lifetime to get to know one another, I reminded myself. To bicker and touch and push and love one another. Things won’t always be this way.

Because she was no longer ventilated and she’d been quite settled since that change was made, she was allowed to come out for a cuddle. Before the nurse passed her to me, I asked Paul whether he wanted to hold her first. He’d been there all week, and I felt like I was swooping in and snatching this incredible moment from him. But he said he didn’t mind. And the nurse said that mums always get to have the first cuddles. As she placed Elodie in my arms, she said ‘They say you’re given a daughter because you need a best friend.’ For an hour, I held her while she snuffled and slept, and I thought about how I’d taken all this for granted with Joseph, and how I probably would with Elodie, in time. I hoped that I would get the chance to become complacent about the magic of holding her in my arms.

Sunday

I did another trip up the M1 with my parents. Elodie had had a bit of a setback. She’d stopped tolerating her tube feeds and, as a result, they’d stopped feeding her for a while. She was grumpy and unsettled, but I was allowed to hold her again and she settled down almost immediately in my arms. Late this afternoon, she was taken down the road in an ambulance to the children’s hospital for an x-ray to check her digestive system. Things looked good, so she was taken straight back and will hopefully start feeding again shortly.

I start chemotherapy tomorrow, so I’m not sure when I’ll see her again, but I know that Paul and the medical staff are taking wonderful care of her. The nurses and doctors we’ve met up there have been incredible. Patient, kind, compassionate. It’s possible that she’ll be transferred back to Leicester at some point this week, but it’s all an unknown. And my reaction to the chemo is an unknown too, so I’m trying not to think too much about how the week will go.

As always, Joseph has been keeping my spirits up at the hardest times. Old habits die hard, and he still spends a lot of time with his head up my top, talking to his baby sister. When I tell him she’s not in there any more, he asks where she is. ‘She’s in the hospital,’ I tell him. ‘Daddy’s looking after her until she’s ready to come home.’ He nods. ‘She is,’ he says, seriously. ‘Do you know how much I love you?’ I ask him. ‘More than anything,’ he says. It’s something Paul started. ‘And how much do we love your baby sister?’ I ask. ‘More than anything too.’

And it’s true.

The birth

Last Sunday morning, Paul drove me to the hospital for the induction of my labour. I was 34 and a half weeks pregnant, and everyone was in agreement that my baby girl was big enough to come into the world. My oncologist was hoping to start my chemotherapy treatment a few days after delivery. I was anxious. I was induced when I had Joseph, and I really struggled with the pain. As a result, I had an epidural, and I planned to do so again, but there were still a lot of nerves.

We were assigned our first midwife, Becky, and given a delivery room. The baby was monitored. A couple of hours after we arrived, Becky examined me and inserted a pessary that would hopefully start the labour. She said it could take 24 hours to get working, but that I might start to feel period-like pains in a couple of hours. I had dull pains on and off throughout the afternoon, but nothing really came of them. In the late afternoon, Paul and I talked about whether or not he should go home to see Joseph before he went to bed. We asked Becky what she thought, and she said that Paul could probably go home and just come back the next morning. I was disappointed that she seemed so sure nothing would happen until the following day. Paul left, promising to drive back quickly if I called him.

A midwife called Shauna looked after me through the night. I didn’t get much sleep, and did a lot of pacing up and down the corridor. From about 3am, the pains started to get stronger and more regular. At about 4.30am, I sent Paul a message asking him to come back when he woke up, and he arrived an hour later. We switched midwife again, to Rachel. She told me we shared the same birthday. She examined me and broke my waters at about 6.45am.

Paul’s job was to let everyone know that I wanted an epidural as soon as possible, and he did it very well. However, I’m not sure any of us were prepared for how quickly things were going to happen once they got underway. As soon as my waters were broken, the contractions got a lot stronger and closer together. I started using gas and air, which seemed to help at first. Rachel called for an anaesthetist to administer the epidural, and I tried to stay reasonably calm and remember that there wouldn’t be too many contractions to get through before it was in.

For some reason, it took about forty-five minutes to get the epidural done. Paul told me this afterwards; my guess would have been three centuries. And even when it was done, the pain was inexplicable. I asked Paul why it wasn’t working. I said a hundred times that I couldn’t do it. I cried. I screamed. I felt sure, with every contraction, that I was going to die. And then, a senior midwife came in and helped me to turn on my side and within seconds, the baby was there in the room, and she was screaming. It was 8.06am.

My midwife had changed again, from Rachel to Sally, at some point during that intense final hour, and I hadn’t even noticed. All these midwives had been kind and competent; I was grateful to them all for the role they’d played in getting her here. Sally cleaned her and lay her on my chest and we gazed at her while I delivered the placenta. We named her Elodie Alice. She was beautiful. Small but perfect. There was a crease in her chin that was identical to the one Joseph had at birth, and it struck me that we had two children now, and our family was complete.

Because of her early arrival, we’d been told there would be a paediatrician in the room at the time of birth, but there wasn’t, because of how quickly it happened. A few minutes after she was born, a doctor put her head round the door and said ‘I can tell there’s nothing wrong with that baby.’ She was a good colour and she was crying, and I remember Sally saying that she seemed like a full-term baby. But within an hour of her birth, something changed. She lost her colour and went floppy, and she was taken away from us to be checked by a paediatrician, who decided that she should probably go to the special care unit for a little while.

I wasn’t too concerned. I’d prepared myself for this. Sally gave her back to me and took a photo of Paul and Elodie and me, and then we kissed her and let her go. And we didn’t know that we were standing on the precipice of something awful; that things were going to get worse before they got better. We waited for her to come back to us.

The next bit

After a bit of a break from all the appointments following the surgery, things started to pick up again. We met with an oncologist, a colleague of my surgeon (because she’s now on maternity leave) and the genetics nurse. We were given a lot of information, most of it pretty complicated.

The best news was that the surgeon and the oncologist were very happy with how the surgery had gone, and confident that everything had been removed. The cancer was a fairly aggressive one, and it was heading for the lymph nodes, but the lymph nodes that were removed were clear, so it hadn’t got there yet. The implication was clear; I was lucky to have found the lump when I did.

Because of my BRCA2 diagnosis, the surgeon discussed the possibility of further surgery with me, and talked me through some of my options. This surgery would be preventative rather than reactive, so there’s no huge hurry to make any decisions, but it seems pretty clear-cut to me. I have roughly a 50% chance of developing another breast cancer in my lifetime, and that’s not a risk I want to live with. My family don’t deserve to have that kind of threat lurking, and neither do I.

But it’s not just a case of opting for a double mastectomy. There’s the question of reconstruction; whether or not I want to have it, and, if I do, whether I want to have implants or use tissue from elsewhere on my body. I don’t like the idea of implants. Of having foreign objects in my body that could potentially burst or leak at any time, and which would have to be replaced roughly every ten years.

And although it would mean more scars and a far longer surgery and recovery time, I do like the idea of having fat taken from my tummy for reconstruction. I like to think of it as a tummy tuck that’s thrown in for free. When the surgeon was explaining this possibility, he looked at my swollen belly and said that it’s impossible to tell right now whether I have enough fat for this to work. I assured him that it wouldn’t be a problem. He told me to think through my options, have my baby and the rest of my treatment, and come back to see him when I was ready.

We saw the oncologist privately. Paul and I both have private healthcare through his work, and it seemed sensible to use it for the chemotherapy treatment. He was a softly spoken, calm man who explained everything very clearly and answered all our questions with great patience. It turned out that the need for chemotherapy wasn’t as clear-cut as we’d thought. A test had been carried out. If a patient’s result is 5% or higher, chemo is definitely recommended. 2% or lower, and it’s not recommended. My result was 3%.

He explained that a part of my tumour would be sent to the States, to the one place in the world where another kind of test is undertaken, and the results of this would determine whether or not we went ahead. I was astonished that there was a chance of escaping chemo, but I tried not to think about it too much, because it was still the less likely outcome. There would be a two-week wait for the results.

And when the result came, it was as I expected. I would be having chemo. The blow was softened by the fact that the oncologist called me personally from India, where he’d travelled because of a close family bereavement. I thanked him for taking the time, and he said that it was nothing. He said that he was sorry it wasn’t the result I was hoping for. And I just thanked him again, still shocked by his capacity to care about my situation at such a time.

In the midst of all this, my sister was taken into hospital with agonising back pain. She’s four weeks further into her pregnancy than I am, and at exactly this point in her last pregnancy, she was taken into hospital with the same symptoms. That time, she stayed in for a week and then my nephew, Louie, was delivered.

It was tough to hear that it all seemed to be happening again, and it came on a day when Joseph was being his most difficult two-year-old self. At one point, when I was desperately trying to put him to bed for a nap and he was refusing to cooperate, I burst into tears. He was visibly shocked, and then he started crying too, a horrible, inconsolable wail. After a couple of minutes, he stopped and said ‘Are you a bit sad? I’m sad too but now I’m ok. Do you want this monkey?’

Meanwhile, the days of my pregnancy continued to mount up and, amazingly, my blood pressure remained under control. When Joseph stands right in front of me, his head is level with my bump. ‘That’s the baby sister,’ he always says, pointing. As if I might have forgotten. ‘Yes,’ I say. ‘What’s she doing in there?’ ‘Growing,’ he tells me, seriously. And she is. We’ve been having growth scans every three weeks. In the middle of May, she was an estimated 4lb 1oz. In the first week of June, she’d stepped up to an estimated 5lb 7oz. The obstetrician said that she’d liaise with the oncologist, but that she was happy to induce me to fit with his plans for chemo.

Last weekend, Paul made the nursery furniture with a bit of help from Joseph. I’ve washed all the tiny clothes. We’ve bought a buggy, got the Moses basket out. A few days ago, I was sitting with Joseph on my lap, reading him a story, when the baby gave a strong kick. He turned around and looked at my bump, and then said ‘Baby sister, don’t take my scuttlebug and my cars, ok?’ I think we’re almost ready for her to join us.