Day +129: Taking control

On Tuesday I had the enormous joy of spending the afternoon with my super-sweet twin nephew and niece, Innes and Matilda, having previously only met them briefly in Oxford the other weekend at their joint christening (at which gorgeous UK-based nephew Benedict was also splashed and blessed). Between accidentally putting squished fruit up Innes’s nose, returning Matilda to a sitting pose on a mat in the garden every time she lost her balance and gently serenading them both to sleep with soft-strum versions of otherwise unsuitable songs, I had a fabulous time – and I like to think they enjoyed it, too. They’ve not complained about the possibility of meeting up again tomorrow, which must be a good sign, although their passive consent may have something to do with being just eight months old.

The first couple of months for them were challenging, though – they weren’t expected to leave the comfortable, protected womb of my sister Harriet so soon, and consequently had to be carefully looked after in the Kuala Lumpur hospital in which they were born. Innes, in fact, has George as one of his middle names, chosen by Harriet and Duncan because he and I were facing medical battles at the same time, on different sides of the world. I was extremely touched.

Now the twins are doing great, and I seem to be heading in the right direction, too. They were born at the end of November; I was diagnosed (with my relapse) in October, and had a new birthday through my stem cell transplant in March – our difficulties may have been very different, but I do feel a medical kinship that goes beyond our blood relationship. I do feel a bit guilty for giving Harriet more to worry about when she was already expecting twins, though; my timing could probably have been better…

Matilda and Innes went from the incredible protection of their mother’s womb to a bright, noisy and no doubt scary world, where they were monitored 24/7 before Harriet and Duncan could take them to the relative freedom of home. Under their parents’ watchful eyes, they have gradually been allowed to confront more and more as they grow stronger and learn how to interact with everything around them. Innes was even tuning my guitar on Tuesday. One day they’ll be big enough and strong enough to go out on their own; later, as the pedagogical protection of school and university falls away and they no longer rely on family support to guide their decisions, they’ll be out there on their own terms.

I feel a bit like that, now. In the run-up to my transplant and in the few days afterwards, before the new stem cells engrafted and my immune system was ‘born’, I was protected, monitored and restricted. As my neutrophil count climbed, I started to get out of my room and around the hospital, before being allowed out to the relative freedom of home. Restrictions and regular check-ups meant that my independence was severely limited for the first few months, but as I’ve grown in strength and learnt the rules for my new interactions with the world, I’ve been able to get out more and take more control of my own life. As Mariacristina is painfully aware, I do get upset and grumpy if I don’t get regular food and/or sleep, though – so perhaps I am still in the baby stage…

Positive results from the second bone marrow biopsy cleared up the uncertainties from the first, but what they also meant to me was that the Day +100 target on which we had been focusing had finally been properly cleared away. It had been like getting exam results, only to hear that the examiners weren’t totally sure you had done enough to pass one of the tests and wanted you to retake it just to be sure. You want to celebrate, but have to wait. Then, as you breathe a sigh of relief on getting the thumbs-up, you suddenly realise you have to start making your own decisions, to set your own goals and to find your place in the world. Just as your structured life provides clear checkpoints (GCSEs, 18th birthday, finishing university, etc), a treatment plan gives you clear milestones to aim for (remission, transplant, Day +100, etc) – but when you move on, you’re on your own.

The twins will still be able to turn to family and friends when they leave university and home and build their own lives, and as my recovery continues I will of course still rely on my wife, family, friends and medical staff to keep me on track and help resolve any difficult moments. The canvas starts to look a lot more blank, though, as you start to take control of your own life.