I’m pretty certain that before my leukaemia relapse, if Mariacristina had used a paint sampler – intended to check colour suitability – to vandalise the walls of our downstairs loo, albeit with friendly graffiti, I’d have shaken my head, sighed and looked reprovingly at her while saying ‘Cuoooore…”. After all, the chances were that the graffiti would be there for at least some time before we got the loo properly painted, and having a darker colour splashed all over the walls may well have added to the work, if we chose a lighter colour in the end.
It’s difficult to get even slightly upset about such things these days, though; the sheer fun, humour and love that Mariacristina’s graffiti showed was definitely something to be celebrated – and so what if it meant we’d have a crazy-looking loo for a bit (surely that’s a good thing?), and might have to put in a bit more work later? Looking back, I can remember so many times when my automatic reaction to any of Mariacristina’s slightly more off-the-wall suggestions or actions would be to set myself in opposition, perhaps because I thought her silliness needed a counterbalance of common sense.
What a load of rubbish! We make hundreds, or thousands, of decisions every day, the vast majority of which simply need a resolution one way or the other, without agonising over the consequences of a ‘wrong’ choice that would probably be just as ‘right’ as its alternative. I’m naturally cautious, probably because I never want to embarrass myself or anybody else, but being seriously ill (again) has taught me that unless something is likely to damage someone or make life significantly more damage, it’s unlikely to be worth worrying about.
I’ve been thrilled that the video of my Donor Song has been shared and viewed by lots of people – hopefully it’s encouraged at least a few to sign up to a bone marrow register such as Anthony Nolan or Delete Blood Cancer. Had it been up to me, however, I’d probably still be re-recording it, adding other bits to the video and tweaking it within an inch of its life. Mariacristina, though, told me not to bother – it didn’t matter that I tripped over the chords and the lyrics a few times, as the heart and intention of the song was by far the most important thing. I’m pretty certain she was right – I doubt many people were particularly interested in my struggles with getting my fingers around the Fm chord, or were cursing at the lack of something to look at beyond my bald head and overactive eyebrows.
When it comes to things that do matter, I was very sad to hear of 19-year-old mega-fundraiser and bowel cancer patient Stephen Sutton’s death last week. Through his ‘Stephen’s Story‘ blog, he managed to raise awareness, as well as more than £3 million for the Teenage Cancer Trust. He knew for a while his cancer was terminal, but that doesn’t make his passing any less sad. I’ve always loved John Donne’s words:
Any man’s death diminishes me,
Because I am involved in mankind,
And therefore never send to know for whom the bell tolls;
It tolls for thee.
Stephen famously had a bucket list of things he wanted to do before he died, and I believe it was this that initially caught the attention of the public. How could you not be moved and inspired by a teenager’s efforts to pack as many experiences as possible into a hugely shortened life? The very fact a time-critical bucket list was a consideration at his age was heartbreaking.
Interestingly, however, as support for his fundraising and awareness-raising efforts grew, the bucket list faded into the background. I’m sure the bucket list had been an important focus to avoid living out his last months faced just with treatment and the bleak prospect of dying, but later that focus shifted to the incredible charity efforts he was inspiring. When people got in touch with him in his final months with offers to help him tick off experiences on his list, he explained that that was no longer a priority.
It seems he’d decided that what was really important to him was the benefit he could bring to other teenagers facing cancer, as well as, naturally, spending precious time with friends and family. Perhaps it was this utter selfnessness in abandoning some of his own personal dreams to focus on his ambition to help others that rightly made him a hero in so many eyes. He managed to squeeze as much good for as many people as possible out of a terrible situation, always with a positive attitude and a smile, and for that he deserves all the praise he has been given, and more.
My efforts are on a far smaller scale, but I hope I get my priorities right. My energy levels are still up and down, but every time I have to react, make a decision or choose a path, I try to think about what really matters. As far as I’m concerned, Mariacristina could graffiti her love on all our walls, and I’d be delighted.
In other news, it’s very nearly Day +60, which would normally call for another chimerism test. It will also be the two-month milestone – hurrah! – and takes me closer to the magical figure of Day +100 and out of the most vulnerable post-transplant period. My ciclosporin levels keep showing up as high, so my dose keeps reducing, but we’ve now reached the point where the doctors are keen to start weaning me off it completely, which would give my immune system a proper chance to develop to the full. It’s exciting, and amazing to think we’re at that point already. Otherwise, bloods are okay, though the flu symptoms are still lingering – probably because I’ve still not got anywhere near a full complement of lymphocytes.
Things are still looking positive, though, and that’s what matters most right now.