At Anthony Nolan, we recently moved away from using the ‘100-day milestone’ that’s often talked about in relation to a stem cell transplant, in part because patients told us they don’t want a timeline attached to their recovery.
Patients like George Norton, who received a transplant and went on to be a patient representative on our Expert Steering Group, and shares here how he feels about facing milestones.
By the time I had my stem cell transplant in 2014, I’d got into the habit of living day to day, cheerfully trusting that tomorrow would never come. And even if it did, I’d deal with it when that happened and not before.
But 10 days after my transplant, after my brand-new, anonymous-donor stem cells had started to do their job, I couldn’t help cautiously glimpsing beyond the subsequent 24 hours. What about the day-after-tomorrow? Next week? Perhaps there was something greater, later and more substantial to aim for.
The 100-day milestone
For the doctors, the 100-day milestone was key. For me, it took a while for it to take any clearer shape than a vague, possibly impossible dream. But, as it started to loom into focus, we understood I might be on the right track. This was the crucial period, we were told. Get through this, we thought, and… well… we can say I’ve made a good start.
I threw a party to celebrate and recorded a slightly surreal video counting up to 100 with friends in fancy dress. ONE HUNDRED DAYS was a wonderful, satisfyingly round number: a great target and an excellent date to celebrate. But though people started asking: “so you’re better now?”, this was just one milestone on a road I’m still marching down, five years on.
Working out how to live
The first 100 days were about surviving. Only then could I start even thinking about recovering: my health was still shattered, my life had been turned upside down and it was clear many of the challenges were only just starting. I was alive, but now I had to start working out how to live again.
Last year, I was appointed to Anthony Nolan’s Expert Steering Group on the post-transplant care pathway and knew I had to represent a broad range of patients.
Talking to others who have had a transplant, it soon became clear that as important as the 100-day milestone seems at the time, it invariably marks just one tiny part of a far larger, broader process of recovery that can last for years, decades, a lifetime. This became a key theme for the Steering Group.
Beyond 100 days
It’s hard enough to face all these challenges, but as friends start to assume you’re better and official sources of support become a bit more hazy, you can start to question whether you’re not just being a little ungrateful, given the transplant has given you this bonus chance of life. You’re not.
The first 100 days ARE crucial. But so are the first six months. And the first year. And the second year (there are reasons donors and recipients stay anonymous to each other for two years). And every year beyond.
We patients know it, because we live it. It’s an amazing milestone. But there’s still so much more to come.
If you or someone you know is going through a stem cell transplant and would like more support, the Anthony Nolan Patient Services team are here to help. Find our recovery information and resources, now organised by ‘Mind’, ‘Body’, and ‘Life’, at anthonynolan.org/patients