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.

The fifth chemo

The night before my fifth chemo, Elodie put in her best night’s sleep in weeks. And of course, Joseph somehow got wind of this and gave us his worst. At 3am, I woke up to find him sitting on the floor at the foot of our bed. ‘What are you doing?’ I asked. ‘I’m just watching you sleep,’ he replied. It would have been terrifying if he wasn’t so cute and cuddly.

So because of that, I started the next day feeling pretty tired, and the session was a bit like the last one. Hard. I came quite close to giving up on the cold cap, but my stubbornness kicked in. I didn’t want the times I’ve worn it to be wasted. So I did my best to distract myself. It’s hard to concentrate on reading when the brainfreeze headache is at its worst, so I put an audiobook on instead. And then I tweeted the author, Caitlin Moran, to thank her for the distraction, and she sent a lovely message back. And so I got through it, one long minute at a time.

The next day, Paul went to Moscow for a week with work. It wasn’t great timing, but my mother-in-law came to stay with us and helped enormously with Joseph and Elodie. Nursery runs, night feeds, the lot. I slept in a couple of times, and it made all the difference. One evening, Joseph wouldn’t stay in bed. And after I’d spent half an hour taking him back to bed calmly, I fell apart and cried. It’s just too hard, sometimes. The smallest thing can break you. But another day, I had a free cancer-friendly massage and facial at Ragdale Hall, and I was restored.

The day Paul returned, it was his birthday. Paul’s mum made cakes and Joseph decorated them when he got back from nursery. Together, they put up bunting and balloons. Joseph practised saying ‘Surprise!’ I asked him a few times whose birthday it was. ‘It is Daddy’s,’ he said, ‘but he will have presents for me.’ He did. Russian dolls, a hat and an aeroplane toy. Chocolate for me. I was over the post-chemo nausea and the tiredness was bearable and we were all back together. ‘I love Elodie more than anything,’ Joseph said, for the hundredth time. ‘More than fire engines?’ I checked. ‘No!’ he shouted, indignant at the very thought.

In the final week of the cycle, I ate a lot of cake for Macmillan. There seemed to be coffee mornings everywhere, and I was more than happy to donate money and eat brownies. Joe was, too. During chemo, I’ve lost and then gained weight. Unlike after my first pregnancy, I was back in my jeans after a few short weeks, but I’ve been eating constantly, which is probably down to the steroids. However, I was told in no uncertain terms not to consider dieting while going through chemo by one of the nurses, and I’ll be having surgery that involves reconstructing my breasts with fat from my tummy in a few months, so it seems pointless to worry about it. For the time being, I’m having my cake and eating it.

Some mornings, Elodie wakes up before Joseph, and we bring her into our bed for sleepy cuddles. When Joseph appears in the doorway and clambers in, we remind him that she’s there and to be careful. If she cries, he strokes her tummy. ‘It’s ok, Elodie,’ he says, ‘we are all here’. I’m not sure whether he’s picked it up from Paul or from me, but I am touched every time he says it. Because it is the most important thing, and he says it to soothe her. We are all here. Together.

Tomorrow, blood results permitting, I’ll be having my final chemo session. I’ve made a chocolate crumb cake for the nurses, who’ve been so wonderful and kind. It feels like a big and important step. For some people, this would be the end, but I have quite a long way to go yet. Still, it’s a milestone, and I’ll be treating it as such. Next step, more surgery. But first, a break. And I’m ready for it.

The letter to my children

To my son and my daughter,

I am going to do everything I can to overcome this cancer and spend the next forty or fifty years with you. To this end, I am having poison pumped into my body that steals my energy and my hair. I am having parts of my body cut off and moved around. I am sending myself into menopause at the age of 36. I am depriving myself of the option to give you more siblings. And I don’t care about any of that. I’d do it as many times as it took.

But there are still no guarantees. I might do all of these things and die anyway. And that’s the part I’m struggling with. Because you are too young to understand any of this, and you don’t deserve it. It isn’t fair that I love you so fiercely every day and yet there’s a chance that you’ll lose me and never remember me at all.

If that happens, there are some things I’d like you to know.

I didn’t always know I wanted you. I thought I did, but I was self-absorbed when I was young, and a part of me wanted to keep my easy, uncomplicated life, in which no-one shouted my name in the darkest parts of the night and no-one screamed into my shoulder in the middle of the afternoon. How foolish I was, to think that there could be anything better than this. I am thankful every day that I chose this life.

I don’t always feel that I’m a natural mother. I try hard to get it right, to balance the love and pride and disappointment I show you. I am trying to steer you without dictating what or who you should be. But sometimes, I’m tired and frustrated and angry, and you bear the brunt of that. I hope it won’t do you harm.

I don’t care who you love. I hope that you will find good, kind people to love and to share your lives with. What they look like or what they believe in or what body they live in is irrelevant to me. You will get hurt along the way. It won’t be as easy to fix as it is now, when a kiss is usually enough to make you feel better. Don’t let it stop you from trying again. Don’t hold back or give less than your whole heart, when you find the person who deserves it.

I hope you will always cherish each other. My sister is the greatest gift I’ve ever had, and I hope you will feel that way about one another. The love between you now is strong and pure, and I know there will be years when you find things to dislike or struggle to get along. But I feel sure that you can get back from there to where you are now, and I hope you’ll care enough to try.

I have given you a wonderful father. He might be sad or angry sometimes. He might shout and do things that you think are unfair. There is so much love behind every decision he makes. And there is fear, too. He wants to keep you close and safe. It might mean you’re not allowed to do something you really want to do. There are worse things than that. Try to understand.

I want you to always act with kindness. I may never know what your strengths and weaknesses are. Whether you’re musical, or athletic, or creative. What I know is that being good and kind are more important than being clever or strong. And you have it in you to be those things. It’s easy. Try to do something every day that makes someone else’s day a little better.

I love you. You will make mistakes, and they might be serious. You will do the wrong thing. Sometimes you’ll do the wrong thing over and over. You’ll say things that are hurtful. You’ll let people down. You’ll take something that rightfully belongs to someone else. I hope you are punished appropriately for these things, by others and by yourselves. I love you anyway. It all comes back to that.

Mum