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.

Advertisements

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.

The not-quite Christmas

I only remember spending one Christmas apart from my sister before this one, and that was when Paul and I lived in New York and spent the day alone. This year, I knew my brother-in-law and my parents would have preferred to give the festivities a miss altogether, but it was understood that we had to do it for the children. Not the babies, who are six months old and don’t have any idea what day it is, but for Joseph and my nephew, Louie. They’ve had quite the year, too, and they deserved a Christmas to remember.

On Christmas Eve, Paul and I took Joseph and Elodie to the hospital to visit Rachel. We don’t stay for long when we have Joseph with us, and on that day, she was asleep for our entire visit. Joseph sang Jingle Bells over and over to try to wake her, but she slept on. So we left her, calling our best wishes behind us, hoping they would mean something.

And that afternoon, we went to Twinlakes, a local theme park. It was freezing, and for the first half an hour or so, Joseph only wanted to play in the sandpit. It seemed like it might have been a wasted trip. But then Paul headed inside to feed Elodie and I persuaded Joseph to go on the rollercoaster with me, and I put my arm around him and listened to his shrieks of delight. When we came to get off, he asked me whether we could go round again, and because there wasn’t much of a queue, the man operating the ride let us sit back down. We stayed on that rollercoaster for five rides in a row, and Joseph’s excitement was infectious. Every time we looped around the track, I felt my gloom lifting a little. By the end of the day, when we were watching Santa set off on his sleigh against a backdrop of fireworks, I felt like Christmas might just be ok after all.

This is the first year that Joseph has really got excited about Santa and presents and the whole thing. So we did the mince pie and carrot for Santa and Rudolph, and the sneaking around with presents after he’d gone to bed. And in the morning, we watched him experience pure joy, sat in the middle of an enormous pile of presents and wrapping paper. And it was wonderful. At one point, he danced with me to Christmas songs in the kitchen, and told me that his favourite present was me.

Later, we were joined by my parents, Paul’s parents, my brother-in-law and my nephews, and things went pretty well. Christmas dinner was on the table late, but it was good. The babies both slept while we ate. It was busy and noisy and fun, but it was far from perfect. Rachel loves Christmas. She gets really excited and she loves watching everyone open presents, and she never gets around to opening her own. We miss her every day, of course, but it’s always harder on special occasions. And it’s so strange, to miss someone who’s still here. We miss her being among us on a daily basis. We miss her being her whole self.

On Boxing Day, I went to see her. Scott and the boys were there, and Louie told me he’d pulled two crackers and given one of the crowns to Mummy. She was wearing it. I held Jay and played with Louie to give Scott a bit of time with her, and when they left, I got my time. I told her that I’d stopped at a supermarket on the way to look at the sale, and that Paul had forbidden me from buying more chocolate, and that I’d bought more chocolate. She said ‘just don’t tell him.’ It was exactly what she always would have said.

Some evenings, Joseph lines up a row of cars next to a soldier on his playmat. He tells me that the soldier is Rachel, and that the people in the cars are visiting her. The first time he did it, it made me a bit sad, but now I look forward to it. It’s a signal that he remembers her, and that he loves her. She’s on his mind, just like she’s on mine.

I can’t say I’m sorry that this year is over. It’s been a tough one, to say the least. In my pessimistic moments, I worry about what 2017 might have in store. But in my more rational ones, I know that it’s unlikely to be anything like as bad. It’s likely to be the year in which Elodie learns to walk and says her first words. The year in which Rachel comes home. The year in which I finish my surgery and start to put this whole cancer experience behind me. I have a lot of hopes for it. And I’m trying to put them ahead of my fears.

The ridiculous writing challenge

A friend asked me a while ago whether I’d heard of NaNoWriMo (National Novel Writing Month). It’s an international event that involves writing a 50,000 word first draft of a novel in the month of November. I’ve thought about doing it many times, and have always concluded that I’m too busy. I told her I was familiar with it, and she said she thought we should do it. My initial reaction was to protest that I had cancer and a newborn, but both of those things were true for her too, so I said I’d think about it.

It was a truly ridiculous idea, given the circumstances. I quite regularly have meltdowns where I cry on Paul’s shoulder about not being able to cope with it all; the cancer, the toddler, the baby, the poorly sister, the much-too-crowded life. I ran the idea past him and I saw the fear in his eyes. More meltdowns. Less sleep. And the constant tap tap tapping of my fingers on the keyboard when he’s trying to relax in the evenings. He told me not to put too much pressure on myself. And I knew it was good advice.

I decided I wouldn’t do it. I could always do it next year, couldn’t I? I’ve written two novels in the past, and each one took me a good eighteen months or so to get down on paper, so I knew what was involved. But then, every now and again, my brain would go back to it, and remind me that it would be a pretty incredible achievement, and a way to make something good out of this dreadful year. To make it the year I had Elodie and wrote a novel in a month, rather than just the year I had cancer and my sister had a stroke.

On Halloween, the final day of deliberation, I decided to give it a try. I don’t like saying I’m going to do something and then not managing to do it (which is why it took me so many years to give up smoking), so I was nervous. And it’s been really tough, so far, but I’m pretty stubborn. Some evenings, I’ve sat down to write my daily words after the kids have gone to bed and we’ve cooked and eaten dinner, and I haven’t been able to keep my eyes open for long enough to get through them. Some days, I’ve glanced over what I wrote the day before and not recognised any of it. Redrafting is going to be interesting (perhaps I’ll do that in January).

My decision to take on the challenge was so last-minute that I didn’t have time to think much about plot. So I decided to take the age-old advice and write about what I know: cancer. My novel is provisionally titled I Wanted You To Know, and it’s told in letters between a mother and daughter who both do battle with breast cancer as young women.

Because this is a huge challenge for me, and because I’ll never run a marathon, I’m taking the opportunity to try to raise some money for Mummy’s Star, a charity which supported me following my diagnosis. If you can spare the cash, I’d be so grateful if you’d sponsor me. I’m in the final few days and I know this will give me the push I need to complete it on time. And please feel free to share this post far and wide, too. Thank you.

The oophorectomy

Because I tested positive for the BRCA2 gene mutation, I decided a while ago that I would have further surgery to remove my breasts and my ovaries after finishing chemo. I have roughly a 50% chance of getting breast cancer again, and up to a 30% chance of developing ovarian cancer, and I don’t much like those odds. So as chemo was coming to an end, I had various conversations with my oncologist and breast surgeons about the plan for my remaining treatment.

My oncologist was in favour of me finishing chemo, having radiotherapy and waiting a year or so before undergoing the preventative surgeries. He felt that having a lumpectomy, giving birth and having chemotherapy were quite enough for one body for one year. And he was right. But I wanted to get on with things, and if I had the surgeries straight away, I could avoid having radiotherapy, so I pushed for that.

Getting a consultation to see the gynaecologists about having my oophorectomy (removal of ovaries) was easier said than done. They hadn’t been involved in my case so far, and despite my oncologist asking them to see me as soon as possible, they kept telling me on the phone that it was being treated as a routine appointment, and they had a backlog, and they’d see me in December. In the end, my oncologist stepped in and they offered me an appointment in two days’ time. And then the operation itself very shortly afterwards.

With less than a week to go until the surgery, I took Joseph to a friend’s third birthday party. It was a small gathering at their house, and Joseph was a bit subdued, which I put down to shyness. After a while, another little boy his age turned up and started to play with a train track, and Joseph went over to join him. And then he vomited, very suddenly, over his clothes and mine, and over every piece of the train track. My friend and her sister kindly sorted us out with spare clothes and we went home.

That evening, my parents came round for dinner and we planned out the next couple of weeks. What with childcare, and visits to Rach, and appointments my parents had back at home, everyone was pretty much accounted for at all times, and we were banking on Joseph being well enough to go to nursery. But the next day, he was sick all over me, and the day after that, all over the sofa. And then he started doing what he likes to call ‘wee wee poos’. It was clear that he wouldn’t be going to nursery for a few days. And then my brother-in-law got ill, and then my dad, and then Paul. We called in reinforcements in the shape of Paul’s mum. She’s the equivalent of three people in terms of helpfulness.

It was a miserable few days. Elodie doesn’t poo very often, and when she does, it usually results in a full outfit change. Every day, there were poo, urine and vomit-stained sheets and clothes to wash. One load after another. But against all the odds, I managed to avoid the bug. When the day of my surgery arrived, a not-very-well Paul drove me to the hospital. I had to be there for 11.30am, but I was told the doctors wouldn’t come round until at least 12.30pm, so I went downstairs to see Rach for a bit. It was the first time we’d both been in the same hospital for treatment. I sent my parents a message to say I was at the hospital and with Rachel, and Dad replied saying it was nice that I had my big sister with me. And it was.

I spent most of the afternoon trying to read in an armchair on a cold ward. There was a problem with the heating, and I was wearing a thin hospital gown and paper underwear. I was fifth on the list. I watched as the women were taken down to theatre, one by one. And then, at 4.30pm, it was my turn. I walked down the corridors with a nurse by my side and my pillow in my arms. I confirmed my name and date of birth for the hundredth time, and then I was led into theatre and I laid down on the bed.

Since some of my lymph nodes were removed, I’m not supposed to have anything done to my right arm. I’d told a nurse this earlier, and she’d drawn an arrow on my left wrist. There was something pleasing about the simplicity of this system, like when I’d had my lumpectomy and they’d drawn a big cross above the right breast to ensure they didn’t cut the wrong one. But in theatre, they couldn’t get a cannula into my left arm after several attempts, so they had to switch to my right. Before I was even knocked out, I felt a bit battered.

I woke up in recovery and was quickly wheeled back to a ward. The day ward I’d come from had closed, so I was taken to a different one, and it was quickly decided that I’d be staying overnight. I felt sick and sore, with terrible pain in my shoulders. I’d been warned about that, and I was glad, since it seems like such an unlikely symptom. It’s something to do with the gas they pump you up with when they do keyhole surgery.

Paul came to visit me that evening, but I was very sleepy. I slept on and off, waking up in pain every few hours. At 1am, I went to the toilet and when I got back to bed, I threw up a couple of times. I remember thinking about how much worse it’s going to be when I have my next operation, which is a much bigger one. But by morning, the nausea had passed, and I managed to eat breakfast. By lunchtime, I was home.

I’m not allowed to lift the children for at least a week, which is difficult. Joseph forgets and asks me to pick him up all the time. And when Paul’s busy doing something else, and Elodie is crying, I feel useless. This morning, Joseph came up to see me in bed and brought his doctor’s kit. He checked my heart with his stethoscope, cut off all my fingers with his scissors and told me I was fine. And despite ongoing pain, it felt really good to be back with my family.

The weekends away

I’ve spent the past two weekends away, courtesy of two great charities. The first one was a spa weekend at Ragdale Hall with Paul, a wonderful gift from the Willow Foundation, who organise special days for seriously ill people under forty. I chose a relaxing couple of days with Paul over a short break with the whole family, and I’m glad I did. Over the past few months, we’ve had almost no time together, what with endless appointments, visits to see Rach, and the chaotic newborn/toddler combination. It felt like a real privilege to be together, with nothing to do. And the kids had a great time with my parents.

The second was a residential Breast Cancer Care event in Bristol. Me and about forty-five other women with breast cancer. It was powerful, emotional and exhausting. On the first day, a small group of us lay on the floor and laughed until we cried in a laughter yoga workshop. And on the second, a different group sat in the same room and cried as we talked about our relationships and our new-found hatred of our bodies.

The women I met there were some of the kindest, strongest and most incredible people I’ve come across, and I’ve got cancer to thank for that, since that was our common denominator. I met a woman who is facing this illness for a second time, one who had a different cancer in her teens and two whose teenage children had really struggled with their diagnoses. Many of them, like me, are raising a young family. Some haven’t had children yet, and don’t know whether they’ll be able to. All of them have been through some combination of surgery, chemotherapy, radiotherapy and hormone treatment, and not one of them was self-pitying. It was truly inspiring.

However, I think it all hit me a little harder than I’d realised. A few days after I got home, my dad came over in the morning to take Joseph to nursery. He often does this so that I don’t have to get myself and both the kids up and dressed by 7.30am. That morning, for the first time, Joseph refused to go with him, and after many minutes of failed persuasion, I left Dad looking after Elodie and took him in myself. On the way, in the car, I told him that I was going to go to hospital soon, and there would be different people taking him to nursery, and that he had to go with them and not make a fuss. ‘I won’t make a fuss,’ he said, in a quiet voice.

When we arrived, he cried and cried, refusing to let go of me. I felt wretched. Driving home, I started crying myself, and I didn’t stop all morning. In the shower, feeding Elodie, answering the door to the postman. It felt like I might never stop. And I realised that, as a result of my sister’s stroke, I’ve spent a lot of time pushing my feelings about my own illness to one side. The weekend had brought them out, and I’m glad it did. When I picked Joseph up that evening, one of the wonderful women who look after him told me that he’d been fine after a short while. ‘He was angry,’ she said. ‘Not upset.’ I’m angry too, sometimes.

The following morning, Joseph was in bed with me. ‘You know that if you’re angry or worried or upset about anything, you can tell me, don’t you?’ I asked. ‘Yes,’ he said. He paused. ‘I’m worried, Mummy.’ I took a deep breath and asked what about. ‘I don’t want Elodie’s chair to be there, I want it to be over here.’ Then last night, he woke up in the early hours and said there were slugs in his bed. I don’t know how much of his behaviour is linked to my cancer, and Rachel’s stroke, and how much is normal for a three-year-old. And I’ll never know. I’m starting to accept that.

The hair loss

I was diagnosed with breast cancer at the start of April, and I’m surprised that it’s taken me until the end of October to write about hair loss. It’s one of the first things you think of when you hear the words cancer and chemotherapy, right? But I didn’t want to write about it until I knew exactly how I was going to be affected. As I’ve mentioned a few times, I chose to use the cold cap to try to minimise hair loss. And although I didn’t like it at all, it certainly made a difference. I was told that, without it, I would definitely lose all of my hair on the type of chemo I was having. And with it? Well, no-one could predict with any certainty what would happen.

After my first chemo session, Mum and I went to a hairdresser that specialises in hair loss and wigs. I tried a couple on. I didn’t like them. But I pored over their brochure and chose three styles to order in and try on. We returned a week later and I chose my wig. It was a lot like my normal hair, but better (because I’m lazy and very rarely do anything with my own hair). We didn’t buy it, because they could get it in within three days, and I wanted to see what happened first. I might not need it.

I had one chemo, two, three, four, and my hair remained. I lost a little more than usual when I washed and brushed it, but nothing major. And then the loss stepped up a bit. I was finding hair on my pillow each morning, and a good handful would come out when I washed it. I started to wash it less frequently. Started wearing hats or scarves most of the time.

One night, lying in bed, I got a bit upset about it. ‘You know it’s not your hair that makes you beautiful, don’t you?’ Paul said. He’s good at saying the right thing, sometimes. I’ve never been beautiful, and the past few months, I’ve never felt further from it. But it’s nice to hold the hand of the man you love and hear that word when you’re feeling low.

At this point, I started feeling frustrated. I was hating the cold cap and my hair was falling out anyway. Not all of it, granted, but enough that it looked dreadful and I wanted to cover it up. I still didn’t order my wig, because I still had a full covering of (very thin) hair and I thought it would probably make me really hot to put a wig on top of it. I’m in an online support group for younger women with breast cancer, and every time someone posted a photo of their shaved head, I wondered whether I should have gone down that path.

I’ve never been very girly. Even before I had children, I rarely bothered to wear a lot of makeup or do much with my hair. Every so often, after a good haircut, I’d vow to make a bit more effort, but it never lasted. So I’ve never had amazing hair that I’m proud of. I’ve never felt emotionally attached. But, despite all that, it’s pretty upsetting to find strands of your hair all over your bed and your carpets and floating in your toilets. It’s upsetting to have a bad hair day every single day.

So last week, I asked my next-door neighbour, who’s a hairdresser, to cut it all off. She checked that I was ready, looked at a photo I’d found to make sure we both meant the same thing by ‘very short’. And then she did it. It didn’t take long, and I didn’t feel any sadness when I saw my hair all around me on the floor. If anything, I felt liberated. It didn’t look great, because it’s still very thin, but it looked good enough for me to go out without a hat for the first time in ages.

When Joseph saw me for the first time after the cut, he tilted his head to one side but didn’t say anything. ‘Do I look different?’ I asked. ‘You do, Mummy. Have you had your hair cut? Did you do it with scissors?’ I asked him whether he liked it, and he said, ‘No, but I do like it a little bit.’ That’s good enough for me.

The bittersweet birthdays

Last week, Joseph turned three. And then three days later, my sister’s son Louie turned five. Consequently, we had three days packed with cake and jelly and boundless excitement. A theme park, a party and a whole lot of presents.

Because Paul was away and it was a nursery day, we celebrated Joseph’s birthday a day late. But to make things simpler, we didn’t tell him. He never has any idea what day it is. When he arrived at nursery on his actual birthday, the women who look after him there burst into song. ‘It’s not today,’ he told them. ‘It’s tomorrow.’

The following morning, he woke up before six and I told him he could come into my bed but he had to try to go back to sleep. So he curled up next to me, asked for a story, asked for a snack, and then finally went quiet for a minute. ‘Mummy,’ he said next, ‘is it my birthday?’ I silently gave up on having any more sleep. ‘It is,’ I said. He grinned an enormous grin.

Rachel is on my mind often, of course, but that afternoon, when we were surrounded by family and I was trying to take photos of Joseph opening his presents, I remembered that at his first two birthdays, Rachel made a note of who each present was from, for thank you card purposes. And I missed her. Not just on a practical level, but on a visceral one. It suddenly seemed impossibly sad that she wasn’t there, celebrating with us.

When I put Joseph to bed that evening, I told him how much I loved him and how proud I was of him. Close to tears, I thanked him for being my little boy. ‘That’s ok, Mummy,’ he said. And then, after a brief pause, ‘can you get off my bed now?’

On Louie’s birthday, Scott and Louie and I went to see Rachel in the morning. Scott handed her Louie’s presents so that she could give them to him. And she wished him happy birthday in the deliberate, emotionless way that she speaks now, and I thought of how excited she has been on his past birthdays.

Five years ago, I spent the night trying to sleep in a cold hospital corridor, waiting to meet this tiny boy. Our family is very small. I don’t have any cousins. Louie was the first baby for many years, and I was so excited about his arrival. When I was finally allowed in, I couldn’t take my eyes off him. He was fragile and perfect, sleepy and still.

It’s sometimes hard to believe he’s grown into the curious, clever boy he is now. I look at him and I can’t really see any trace of the baby I met that day. But I love him just as much as I did then. I love him more.

In the afternoon, he had a party. There were twenty-three children, mostly dressed as superheroes. There was food and games and face painting and running around. So much running around. We’d all been a bit worried about the various elements of it, but it seemed to go well. Friends stepped in at every opportunity to help out, as they have done throughout everything. Rachel’s absence was palpable, though. She would have been everywhere, doing everything, stressed and possibly a little snappy, proud and happy.

It was a tough few days, tiring both physically and mentally. But I think we got away with it, and gave both boys a nice birthday. And that’s the most important thing. A couple of mornings ago, Joseph came into our bed early and we had a kind of conversation while I drifted in and out of sleep. At points, he just rambled away to himself. ‘Rachel had a big poorly,’ I woke up to hear him saying, ‘so she had to go to hospital.’ And then this morning, he pointed to a soldier on his playmat and said ‘that’s Rachel.’ ‘What’s she doing?’ I asked. He looked at me for a moment. ‘She’s getting better,’ he said.

And she is. It’s a long, dark road, and we keep losing our way and doubling back on ourselves. But at the end of it, perhaps there’ll be another party, with no face painting and no running around and plenty of wine. Here’s hoping.

The perception shift

I’ve been feeling quite down about my sister Rachel’s situation lately. We had some amazing, rapid progress a few weeks ago, when she started to speak and to eat. I have a messaging group with her close friends and there was a time when it seemed that every day, someone had witnessed her doing something incredible, and we were all buoyed by that.

And then, it all slowed down. And stopped. And seemed, at times, to be going backwards. She’s started moving her head a lot, in a rhythmic way. She says it itches. It’s disconcerting to see. She’s also started a habit of counting very rapidly and almost under her breath. You can snap her out of it by asking her a question, but again, it’s a worry.

I just finished reading a memoir, The Last Act of Love by Cathy Rentzenbrink. When Cathy was seventeen, her sixteen-year-old brother, Matty, was hit by a car and suffered severe brain damage. I bought the book before Rachel’s stroke, but didn’t get around to reading it until this week. I was taken aback by the similarities in Matty and Rachel’s treatment at the outset, despite the different causes of their brain damage. Reading about Matty’s life-saving brain surgery, and his need for a tracheostomy, and then a shunt to drain the fluid from his brain, was like reliving those horrendous days in July when Rachel was at her worst.

And then, their stories began to head down different paths, and the contrasts were as stark as the similarities had been. Matty did not become aware of his surroundings and able to communicate with blinks and nods. He did not move beyond eating small amounts of pureed food. He did not mouth ‘I love you’ to his family and progress to speaking.

I have to take a step back, when I’m frustrated and sad about how far Rachel has to go, and be thankful for how far she’s come. And I’m grateful to Cathy Rentzenbrink for writing about her family’s tragedy in such an honest and beautiful way. She has allowed me to view my family’s situation in a new, more hopeful, light.

Everyone has told us that this is how it will be. Fits and spurts of progress, followed by lulls and small steps backwards. And my sadness about this current lull is simply a product of my fierce wish for her to keep getting better. Because she has an army of people who miss her and want her back. Nevertheless, I will try to focus on how far she’s progressed, which is further than anyone predicted at the beginning.

Rachel’s oldest son, Louie, has just completed his first half-term at school. He received a gold star from the headmaster recently for good handwriting. He tells me he loves school so much that he wants to sleep under the teacher’s desk. And there are new places and words in his conversations. Last weekend, he told my dad that if you miss the bus to South Africa, you can get on the next bus to Loughborough and catch up with it there. He will turn five this weekend.

It’s almost unbearable that Rachel is missing these things. We tell her, but it’s hard to know what she takes in. She doesn’t smile. Her younger son, Jay, is almost four months old and he’s strong and sweet. He sleeps through the night and he screams louder than any baby I’ve ever met if his milk isn’t exactly the right temperature. It won’t be long until he is rolling over, sitting up, eating solids. I want Rachel to witness all of that, of course, but I’m trying not to be greedy. For now, I’m thankful for the turn her recovery took. For the fact that we can visit her and share our news and, if we’re lucky, get a response.

I was visiting Rachel with my dad the other day. He was talking about his TV and how it kept freezing and… He paused, unable to think of the word. ‘Rebooting,’ Rachel said. It was a tiny moment, but I wouldn’t have believed it was possible three months ago. And I’m looking forward to witnessing things I can’t imagine now in another three months’ time.

The final chemo

I can’t know for sure that my sixth chemo was the last one I’ll ever have. I’ve come across too many women lately who’ve been through this more than once to take anything for granted. But it’s the final one for now; a door gently closed.

Because Elodie had been projectile vomiting on and off for a few days, we decided that Paul should stay at home with her, and I asked Mum to come with me to chemo. There was a nice symmetry to it. Mum had come with me to the first one, and Kate, the nurse who’d looked after me that first time, was with us again. Partway through, Mum had a call to say that her cousin’s daughter had safely delivered her baby. It was a lovely boost, and I was reminded that, during my first chemo, we’d been waiting for news of my nephew’s birth. Thinking about all that had happened since then would have taken a level of bravery I didn’t feel that day, so I just focused on the matter in hand.

I’d been dreading this final confrontation with the cold cap. So much so that it wasn’t as bad as I’d feared. My hair was thin and brittle, but I still had a full covering. Like it had been all along, it was manageable. For the first half an hour or so, I listened to my audiobook with my eyes closed, and then Mum and I went back to chatting, and I knew the worst was over.

I’d taken a chocolate cake in for the nurses, and Mum cut it into big chunks, but it was a hard sell at first. Everyone said they were trying to be good, and I thought I was going to end up taking it all home again. The way my appetite for sweet food has been, I was actually quite looking forward to eating the entire thing myself. But gradually, people started to help themselves. Kate took charge and distributed it between the nurses, the receptionists and the pharmacy staff. Later, one of the other nurses took a piece for my oncologist. There was something comforting about the idea of feeding these people who had been helping to fix me. So as the tray emptied, my heart filled.

When it was over, I wasn’t sure how I felt. I knew it wouldn’t be as simple as elation. Yes, this step was over, but I was exhausted, and I still had the side effects of this round to come. I left quietly, hugging the nurses on the way out. Thanking them for what they’d done, on the edge of tears. I will miss these women. They are skilled and compassionate and good. I hope they know what a difference that makes, in times like these.

A couple of days later, three friends arrived from London and Oxford, complete with ingredients for an enormous breakfast. One to help Paul look after Joseph and Elodie while the other two accompanied me to a local spa for a day of complete relaxation. It was blissful. We lounged around, ate cake and caught up. It was a glimpse into a happier, less frantic future.

I’ve started to try to prepare Joseph for my upcoming surgery. I’ve told him I’ll have to go to hospital, and when I come back, he’ll have to be careful with me. ‘You will be all right,’ he tells me, and I say that I will. But then he has questions. Will I be able to talk? Will I be able to cuddle him? It’s clear that he’s thinking of Rachel, and it’s heartbreaking. I reassure him as best I can. Because I’ve learned this year that we really don’t know anything. But I’ve also learned that we’ll make it work regardless. He’s counting on us, and I don’t intend to let him down.