Ashling was diagnosed with late-stage acute myeloid leukaemia when she was just 25 years old. After undergoing treatment, including chemotherapy, she went on to have a stem cell transplant in 2012. In this blog she talks to the Patient Services team about her recovery and how she was able to self-manage her situation.
When you leave hospital after your transplant, there’s lots to remember. Was it difficult to keep track of the various hospital visits, doctor’s appointments and medications etc? What did you do to try and help keep track of everything?
I didn’t find it hard because when I was first discharged, I had to go back in once a week for blood tests, because I’d been so ill. As time went on, the visits became slightly less frequent, and I kept a record of when I was going in, as it gave me a sort of control.
Medication wise, I did struggle a bit. I was on quite a lot of meds initially, so I’d occasionally forget to take them or accidentally take too much – I once took double the dose of one of my meds for a whole week (luckily there were no negative implications from that error!). I’m now in the swing of what I need to take and when, it just took time to get used to it. When I’m on antibiotics for infections, I use the alarm in my phone to remind me of when to take doses.
Why was it important for to you to feel like you had some control over your recovery? And what benefits did you gain from it?
Keeping track of my appointments gave me a level of control which I needed back, after having very little control for so long. But also, being an active participant in my check-ups with the doctors gave me that control too. I read up on what they were telling me medically, so I could understand what we were treating and what the plans were for me. Having this level of understanding helped me hugely. I think the main benefit was a reduction in stress for me.
Did you set yourself any goals while you were recovering?
Running is just something I have never been any good at. I get so out of breath when running, and look and feel like I’m dying! It took me about eight months to get to 5k, which is loads longer than most people would do it in, but I did it, and there were times where I honestly didn’t think I’d get there.
It might not sound like a lot, but it really was a huge milestone for me. I was so proud of myself. I know there are people out there who run 28 miles and are absolutely fine – and I run 5k and it’s hard. It’s still hard but the next milestone I hope to achieve is running 10k.
I have achieved things I never thought I could, from very humble beginnings to milestones I am proud of. It’s important to not be too hard on yourself, but reach for the stars – I feel a bit cringey saying that, but really, it’s true!
You have recently had a look at Anthony Nolan’s new phone app that’s designed to help patients track aspects of their recovery and set themselves goals. What were your first impressions of My Transplant Tracker?
I bloody (do you like my pun?) LOVE it! I think this is a wonderful app and I wish it had been around back in 2012 when I had my transplant. I am certain that this will be received very well. Thank you so much to those who developed it.
Why do you think the app will be beneficial to patients?
The ability to track clinical data. When I was recovering, it was really important to me to be aware of my bloods, chimerism (the proportion of immune cells that come from your donor’s stem cells) etc. I also love that you can add medical appointments in.
Do you have any final advice that you would like to pass on to people who are beginning their own recovery after their stem cell transplant?
Do whatever works for you. We all beat ourselves up at times, for perhaps not doing enough, but even something like going for a walk can make all the difference – and it could be the start of bigger things.
My Transplant Tracker is available to download for free from Apple’s App Store and Google Play Store – search for ‘Anthony Nolan My Transplant Tracker’.