Page 13 of A Mother’s Last Wish

13

LOUISA

Tom has broken the knuckles on his right hand. He came back from getting the coffee at my first chemo session and I could see how swollen his hand was straight away, coupled with the way he was wincing, but he tried to pass it off as nothing. It was only when one of the medical staff spotted it and insisted he get it checked out that he admitted he’d knocked it against something. I wish I could believe that was true, but I know it isn’t. He’s punched something. Not a person, but a wall or a door maybe. He has such an ingrained sense of justice, it’s what driven him to do what he does and to expose the things he feels are unfair, even when it’s put his own life at risk, and he just can’t accept the injustice of my cancer diagnosis. I’m with him on that, but I haven’t got time to be angry any more, there’s too much that needs to be done, and sadness has been my overriding emotion ever since this started.

Tears come so easily now. Just brushing Flo’s hair this morning made me cry, realising how long it has grown since the photograph taken at Christmas that faces me on the dresser. I couldn’t help wondering, as I began to plait her hair ready for school, whether I’ll be around by this December. Christmas always feels like a whirlwind of activity, where I barely have time to take it in. My phone has over thirty-five thousand photographs on it, because I snap every moment, and looking back at the Christmas photographs is my favourite part of January. It’s what gets me through the grey days, and I can almost take in the joy of the celebration more after it’s over and everything’s gone quiet, than I can at the time. I’ve never minded the frenetic pace of December, because it’s about fitting in everything that the kids love, but as I looked at that photograph this morning, I know things are going to be different this year, even if I do make it. The chances of me being able to keep up my usual pace are non-existent and, even if I could, I’ve realised I don’t want to. I want to slow down time and take in every moment, because even if the chemo works, there’s a very good chance this could be my last Christmas. When the thought struck me this morning, I couldn’t blink back the tears and to my horror Flo noticed, as she turned to look at me when I’d fastened the bottom of her plait.

‘Why are you crying, Mummy?’ The straightforwardness of my daughter’s question was such a contrast to the way adults talk to me now, skirting round the edge of what they want to ask. I’ve begun to drop my guard a bit about what’s happening since I started the treatment last month, telling a few of my closest friends but only on the proviso that they kept it to themselves. I don’t want people who have no usual investment in how my life is going, to suddenly feel the need to get involved, and the prospect of it somehow getting back to the children, or my parents, before I can talk to them myself is horrifying. I thought it might help to tell other people, so I could talk to my friends about my greatest fears, but it’s like they’ve all been coached by Tom.

They’re all focusing on ‘the battle’, telling me that I’m brave and strong and that if anyone can fight this thing and keep it at bay it’s me. I want to tell them they’re wrong on every single count and the idea of this being a fight is stupid. No one just allows cancer to take them, but it’s not a fair fight and sometimes the victor is pre-determined before the start. So all their pep talks do is make me feel like a failure, because I haven’t got what it takes to fight this thing and win. None of them will allow me to be honest about the fact that there’ll only be one outcome to this, so when my daughter asked such a straightforward question, I very nearly blurted out the truth to her. Instead, I took a breath and shook my head.

‘My eyes are just a bit sore, darling; I’m not really crying.’ Flo pursed her lips and gave me an appraising look, clearly trying to decide whether to believe me, before hitting me with another killer question.

‘Can I plait your hair?’ That one was like a punch to the gut and my hand instinctively went to my head, touching the satin turban-style hat I was wearing to hide the already obvious hair loss from the first round of chemo. The turban is turquoise blue and covered with daisies, a cheerful pattern for a miserable purpose.

‘Not today, darling, we’ve got to get going for school, but maybe we can do it at the weekend when we’ve got more time.’ I managed a small smile, so tight it made my cheeks hurt. I’ve got my wig fitting appointment soon, and I’ve got no idea how secure those wigs are, but maybe there’ll be a way to allow Flo to try and plait my hair without the risk of her pulling the wig off and discovering the truth in the most traumatic way possible. I know I can’t delay telling my children for much longer, but I’ve still got no idea how to do it.

The Grapevine cancer forum is more or less my only reading source now. I’ve always loved losing myself in novels, or escaping into a world of celebrity gossip to de-stress, but I can’t focus on even the most inane of articles these days. Instead I spend all my time on there, reading about other people’s journeys and talking about mine. It’s the only place where I’m able to be completely honest, and I’ve found lots of support there. I also seem to have got myself an enemy in @booblesswonder777 who has made sniping at me a hobby, ever since my post about wanting to influence Tom’s choice of future partner. Her responses to me usually disappear quite quickly, apparently reported to the site administrators by other users. I wouldn’t have believed it was possible for words from a stranger on the internet to hurt me, when I’m already facing a terminal diagnosis, but it turns out they can. Her response to my question about how to break the news to the children was particularly awful.

Just tell them. It doesn’t matter how you dress this up, losing their mother is going to hurt them and only an idiot would think there’s some kind of magical way around that.

The viciousness of her response literally took my breath away, and I could feel the beginnings of another panic attack starting as the words on the screen swam in front of my eyes. I had to get away, to try and stop it escalating, but once it began to subside, anger took over and, for the first time, I decided I was going to report @booblesswonder777 myself. Except by the time I got back online, her barbed words had been replaced by something else.

This user’s comment has been removed for breaching the forum’s rules.

And there were lots of comments from other users underneath, criticising what @booblesswonder777 had said, and accusing her of being a troll. There were also loads of other messages with far kinder suggestions, including this one from @itsnotalloveryet2.

I’m so sorry you’re going through this @worriedmum1982. There’s no easy way to have this kind of conversation, but I think the best advice is to keep it simple. Tell them where the cancer is, what your treatment will be like and any side effects there might be, so those things don’t scare them when they start to happen. Be as honest as you can and perhaps tell them that the doctors can’t make you better, but the medicine will help to stop things getting any worse. I truly hope it will. That will leave you in a good position for if and when they need to know more, depending on their age. If they ask if you’re going to die, only you can decide how to answer that, but whatever you say you’ll need to reassure them that other people who love them will always be there to care for them, no matter what happens. Sending you strength and love xx

I cried again then, but for completely different reasons. The kindness of strangers can be every bit as a breathtaking as their cruelty, but it is @itsnotalloveryet2’s advice that I’m determined to draw upon when I speak to my precious children, and I know I can’t put it off for much longer.

St Martin’s has increasingly become my sanctuary. It’s the quiet of the place that I love the most. Like many village churches, it’s more often empty than not and I know there’s little risk of me bumping into someone I don’t want to see. Right now, I need somewhere to sit and think after my latest chemo session. When Mr Whitelaw told me my treatment was called GemCap, it didn’t sound too bad. After all, nothing with the word gem in it couldn’t be too awful, could it? The treatment itself is bearable, and it comes in four-weekly cycles, with a combination of medications called gemcitabine and capecitabine. I go in once a week for the first three weeks so that they can administer a drip of gemcitabine, as well as taking tablets. Then I get the fourth week off treatment, but it’s nowhere near as much of a holiday as it sounds because the side effects don’t seem to realise they’re supposed to be on a break. I won’t make it to menopause, but I’m getting all the symptoms; hot flushes, skin rashes, headaches, and a pain in my bones that I can only describe as feeling like toothache.

Sometimes I can’t face the thought of having anyone come with me to chemo and I know I’ll be in trouble later, because I told Tom that Holly was coming with me today, but I told Holly that Tom was. They’ve always been quite close, but these days they’re talking far more often, and I know my lie will be found out when one of them is the first to text the other to ask how it went. But I needed to go alone. It’s bad enough that I have to go through the hell of treatment, without having to drag either of them through it every time too. They’re not even allowed to sit with me to keep me company, while the ‘good’ poison is dripped into my veins, in an attempt to hold back the bad poison of the metastatic tumours. That means all they can do to while away the time is to sit in the waiting room and think or doom scroll on their phones. I’d much rather they were out there doing stuff to try and take their minds off things, even for a bit of the time.

Tom has been keeping up the pretence that he’s in the research phase of his next big project, something that happens from time to time, but I’ve never known him to work from home as solidly as this. And Holly seems to have sidelined work too, claiming it’s a quiet time of year and she’s just taking some well overdue leave. But I know the truth, they don’t want to leave me alone, and they don’t want to miss time that we might not get the chance to make up. I love them both for it, I really do, but it’s suffocating and I have to paint on a smile far too often when I’m at home, so that I can reassure the people who mean the most to me. All of which make my now regular visits to St Martin’s essential to my ability to continue with a gruelling regime of treatment. It gives me time to process everything, and the space to actually feel the things I’m feeling, without having to put on an act for anyone else’s benefit.

I don’t know how long I’ve been here, with my eyes closed, but the cool of St Martin’s is even more appealing today in the midst of a heatwave. I haven’t heard a sound in what feels like hours, so when I open my eyes I’m stunned to realise that Kate is standing up by the altar, silently adjusting the position of a floral display. I noticed the flowers when I arrived, smelling their sweet aroma before I even saw them. There’s a wedding tomorrow, I know that from the noticeboard in the church porch, where a message reminds the bell ringers to arrive promptly at 10.45a.m. It’s almost impossible to believe that other people are celebrating new beginnings like that, and I wish I could go back to my own wedding day and relive it, and the years that followed, over and over on a never-ending loop. Except I can’t, and I pinch the fleshy part of my hand, between the index finger and the thumb, to stop myself from thinking about the next ‘celebration’ I’ll be a part of in this church. I don’t want my life to be celebrated after just four decades, it’s far too short a time as far as I’m concerned.

‘I didn’t hear you.’ I call out to Kate to let her know she doesn’t have to try and move silently any more, and she smiles as she turns towards me.

‘I didn’t want to disturb you.’

‘Thank you.’ I nod to emphasise my gratitude. I desperately needed the quiet time today, and I really am thankful for the effort Kate went to in order to give it to me.

‘How are you?’ Kate is closing the distance between us and I’m grateful again for how normal her question sounds. There’s no saccharine sweetness in her voice, and no tell-tale tilt to her head to indicate just how hopeless she thinks my situation is.

‘Sad, scared, scarred, sick. There’s another S word I could give you, but I’m trying to respect where we are.’

‘I’m praying for you.’ Kate’s words could easily annoy me, but I know the intention comes from a good place and so I nod again. ‘I know that’s not a lot of practical use to you, but if there’s ever anything I can do. Drive you to appointments, help out with Stan and Flo, school pickups. Anything, just name it.’

‘That’s really kind of you.’ I smile again, knowing Kate’s offer is genuine. It’s funny the people who have stepped up to offer help and support since I’ve been more honest about my diagnosis, because they haven’t always been the ones I’d have expected. It’s only been three weeks since I’ve let anyone other than Tom, Holly and Kate know, but some of the people who promised to be there for anything I needed have already stopped even checking in on me. Giving them the benefit of the doubt, I might put that down to them not wanting to overwhelm me with ‘how are you?’ texts, but the reality is that their own lives are taking priority and I understand that too. It’s just a bit humbling to realise how little you matter to almost everyone when it comes down to it. My cancer is not at the forefront of their minds, I get that. I just wish to God that it wasn’t at the forefront of mine.

‘I was hoping I might see you, because I’ve got something for you.’ Kate heads to the back of the church and pulls something out of her bag, before coming back and handing me a book. Turning it over, I read the title: The Cancer That Wouldn’t Go Away.

‘I couldn’t stop thinking about what you said that first day about breaking the news to the children.’ Kate shook her head. ‘I can’t even imagine what that feels like, but I did a bit of research and I found this book. A lot of people said it helped their children understand and find a way to make the most of every day, without having to avoid the truth about what was going to happen.’

I reach out and squeeze Kate’s hands, touched that someone I barely know has gone to this much trouble for me. ‘Thank you.’ I breathe the words out and she nods, but doesn’t respond, instead giving me the space to talk about how I’m feeling and it’s something else I’m incredibly grateful for.

‘I just wish that Stan and Flo could take having me around for granted, but they’ll never be able to do that again once I’ve told them.’ I run a hand over the cover of the book, shutting my eyes for a moment, before opening them again. ‘But I’m going to read this to them tonight. I can’t keep pretending everything’s okay, especially when Flo is starting to pick up on the fact that something is wrong. Telling them is going to be so hard.’

‘You can do it.’ Kate fixes me with a look of such certainty that I find myself nodding. I’ve still got no idea where I’ll find the strength, but the only thing that’s certain is that I don’t have a choice.