Mariacristina was off work on Monday, having traded it for working on Sunday to keep social media updated with the progress of runners in the London Marathon raising money for CAFOD, the charity where she works. They included Tom Jarvis, the youngest participant this year, who turned 18 just two days before the event. I am in awe of his and all the other runners’ determination and stamina; even at the peak of my fitness I struggled to get around the school cross-country course. I like to tell myself I was more of a sprinter.
I also discovered only a few days before the marathon that the official charity this year was none other than Anthony Nolan, which consequently had over 500 runners taking part and happily gained a lot of coverage for its bone marrow registry. I believe they raised over £1 million, which will effectively pay for the recruitment of another 10,000 potential donors – that’s 10,000 more chances for blood cancer patients to find a match if and when they need a bone marrow transplant.
Particularly moving was the story of Jonny and Sean, a stem cell transplant patient and his donor, who ran it together after meeting for the first time two months ago. It was written up beautifully for the Guardian by my fellow transplantee Hannah in an inspiring article published the day before the marathon. Although I wasn’t up early enough to see it (surprise surprise), their story was also shown on television before the marathon; the moving video is now available on the Anthony Nolan site.
I would love to meet my donor one day, although Anthony Nolan has strict rules on avoiding contact for the first two years after transplant. I can, however, assure you that I will never ask him to run a marathon with me, for the simple reason that there’s no chance I would ever be up to running it myself. I’m aware of many people who have sworn they would never do it, only to change their minds after getting through their own particular challenges. I understand they feel they want to give something back while pushing themselves to do something they once thought impossible.
However, I hate running. Perhaps it’s partly because in recent years every time I’ve managed to put on my trainers and head out to a nearby park, or even just set off around the block, I’ve ended up aggravating one of the injuries I’ve developed over the years. Most recently, before my relapse diagnosis, I managed a sedate 20-minute ‘run’ around Streatham Common, during which several mothers with pushchairs overtook me. I’ll admit that I felt pretty good when I got back: I won’t deny the satisfying feeling after any good bout of exercise. Unfortunately, though, the next day I woke up to discover my weak knees were struggling to keep me up. If it’s not my knees, it’s my ankle, which has sadly often curtailed my efforts to get back into playing football.
Without wanting in any way to take away from the incredible achievement of completing a marathon, this part of my treatment is, at least in terms of its length, marathon-esque. I jogged through the first 20-odd days okay, albeit with a few niggles here and there, but I know there’s still a long way to go. Unlike the marathon, though, there’s a decent chance that things will get easier as I progress, although in my case there isn’t a definite finish line.
There are, however, milestones, some of which are provided by the protocol. Day +100 is generally considered to be an important day, and not just because it marks the point at which any incidence of GvHD is considered chronic, rather than acute – although the differences between the two are important. Once through that three-month-ish period, doctors start to consider winding down some of the meds – depending on how things are going, of course. It seems a long way off, though, as to an even greater extent do the six-month and one-year markers.
It’s therefore important for me to have smaller goals, just like marathon runners – which is why I’m currently excited about being just over a week away from Day +30. It’s amazing to think that it’s already been over three weeks since the transplant, and it will be great to reach the ‘month’ milestone. My blood counts are holding up well (neutrophils: 3.6), and my lingering flu has shown some signs of potentially improving today, but my infection markers were up, having previously been at a normal level. There haven’t been any other warning signs of infection yet, but I’ve started some oral antibiotics to try to ward off any developing bugs.
Fred’s now left Streatham for the last time before his return to Vancouver this weekend. It’s been great to have him over – particularly as I’ve been on much better form (he might disagree) than we had been expecting. He’s gone up to Yorkshire to see Tom, Alice, Peter and Benedict; I’m jealous that he’s able to see more of them than I am at the moment despite living abroad! My dad also headed home, having provided wonderful extra support to me and Mariacristina for a few days.
Day +30 gets closer – and right now I’m not looking too much farther ahead than that…