It’s been a while since I felt compelled to write, but 6 months in to a 2 year maintenance programme designed to keep me in remission from leukaemia I feel the urge.
Maintenance means I am still at the hospital most weeks for blood tests where I share a waiting room with so many people with head scarves, wheelchairs, pale skin etc, a reminder of what I’ve been through. I’m still taking chemo tablets at home every day. Every quarter I’m still having chemo injections in to my spine, a high dose of vincristine chemo by IV, and a course of steroids that mean I don’t sleep for a week.
Outside of that I’m pleased to say that life is starting to become a bit more ‘normal’. I’m back running the household, doing the school run, looking after our gorgeous girls and my wonderful hubby. There’s glimmers of a social life emerging, dates in diaries that we’ve actually managed to keep, a summer holiday booked and even travel insurance acquired that didn’t break the bank!
I have to prioritise my energy, my family always comes first. The school run is, mainly, quality time with my younger child. Watching the school show and sports day is a pleasure, even in the rain. As a family we’re enjoying trips out, games in the garden, a cheeky midweek tea at the local burger bar. It’s all about being present in the moment, not thinking too far ahead, not taking on too much. Putting in the extra effort to make happy memories.
I am determined to take the opportunity to spend time nurturing our children, to give them the skills to live a full and happy life regardless of what ultimately happens to me. And there’s the rub. What will happen to me?
Having faced my mortality it is often hard to forget it. The recent half term is the first time I’ve truly relaxed since diagnosis. The voice on my shoulder that for months has been nagging me “This could be it, this could be the last time you do this” was, for once, silent. It was a ‘normal’ week of family fun.
But it seems there is no escape. On Saturday morning I was doing my hair ready for a day out and a clump of it came out in my hand. It’s two weeks since my last high dose treatment, it’s never made my hair fall out before, so why this time? I’ve only just grown back hair long enough to need it cutting, choosing a choppy short style that needs waxing now seems not such a good decision, the more I touch it the more it falls out.
It’s almost as if the cancer won’t let me enjoy life for too long, it has to bite me, remind me it’s still here, threatening me, reminding me, proving it’s relentlessly powerful cruelty.
I know I’ve been here before. I hope it won’t come to it but I know my head shape suits baldness (hooray for silver linings). I know my hair will grow back, darker, thicker and curlier than before. As our younger daughter said ‘You’re still the same wonderful Mummy’. But watching it go down the plug hole brings a sinking feeling, no pun intended! Do I have to go through that again? Really?!
So this is the new challenge, how to manage my expectations, how to pick myself up after each dip of the rollercoaster, how to learn to live life with cancer’s physical and mental impact. There’s also the question of what to do with my time, how ever long that is, long or short. What do I want life to look like? There is a mental bucket list of exotic places to visit but then there’s reality! I love being there for my children and my husband but I do also need something for me. I’m in a powerful position to campaign and fundraise for all things Royal Marsden, blood cancer, and stem cell donation, I’ve already done some, I think it’s important for society, and it helps me process my experiences. But should I continue to do that, or should I walk away to find something else that isn’t related to my condition, to try to escape it?
What ever decisions I take on how to cope and what to do takes my family’s needs in to account. I won’t take on any more campaigning without their agreement, I will try to fit planned treatment around their activities, after all, this is a disease that continues to affect their lives too. Ultimately it’s about making life as fun as possible, putting in the effort to ensure our children have a positive role model, who takes a moment to acknowledge the sadness, but doesn’t let it take over. I never want to be described as someone who ‘lost her battle’. Regardless of the outcome I want to succeed, I’d like my family to take away a positive from it all. It’s not always going to be easy, but then I guess life isn’t easy for any of us sometimes.
Ultimately, what ever I decide, leukaemia will always be part of my life, thankfully mainly in a positive way. It has shaped the person I am, I think it will shape the people our children grow in to. It has made me kinder to others and myself. I ‘dont’ sweat the small stuff’ as much as I used to. I live in the moment. So yes there will be times when I feel rubbish, and yes I might be about to go bald for the second time, but in the end life is a privilege and not something to take for granted, so it has to be lived.
