For most people who’ve had a stem cell transplant, returning to work doesn’t occur until at least a year post-transplant. However, some are able to go back sooner – like Mark, who spoke to Billie in the patient team about his experience of returning to work a few months post-transplant.
Can you tell me a bit about your diagnosis and transplant?
I was diagnosed in the summer of 2015, following months of symptoms including light-headedness, muscle pain and various other health problems. I had a blood test that showed it was leukaemia. I had three lots of chemotherapy, but my high risk of relapse meant that a transplant was the best option for me.
I was very hesitant about the idea to begin with. I took a lot of time for reflection and got a second opinion. I’m an engineer, so I needed to look at the figures and statistics; it’s just the way my brain works. I like to see numbers and know potential outcomes.
I eventually decided it was best for me and had my transplant in March 2016.
How are you doing post-transplant?
Wicked; generally really good, apart from this blasted cold! It’s my first cold post-transplant. I’ve been very lucky with my recovery (touchwood); it’s been relatively smooth so far.
Don’t get me wrong – to begin with, when you can’t eat, or do anything and you’re feeling really disconnected, it’s hard. But once I was able to get out of the house and start walking and doing a bit more, things just progressively improved.
When did you decide that you were ready to return to work? And when did you start thinking about it?
Actually. I kinda rushed into things a little bit, which was a good and a bad thing!
At the end of May – so only two months after the transplant – I started to visit some of my clients.
I am a freelance sound engineer, so I just wanted to check in with people, catch up and let them know how I was doing after the transplant. One company asked if I was up for doing some voluntary work, as they were moving warehouses and needed someone to test all the lights and equipment.
I did about three weeks of that, and by the end of the third week I was absolutely floored; I realised that I just wasn’t ready for doing anything near as much I previously would have been used to. The fatigue really hit me, I had kidney pains, and generally felt awful – all self-inflicted.
I do think it was good to try it, though, because it gave me an idea of how much further I had to go to get back into working properly. But yeah, I definitely pushed myself too far too soon!
What adjustments have you made, since your return to work? Have you struck a balance between working and not doing to much?
I’ve been lucky in that all of my clients have been really respectful of what’s gone on and offered me the smaller gigs. And that’s something I’m suggesting to new clients, too; working on smaller gigs and shorter days while I get stronger.
Also dealing with less complicated set-ups, less physically and mentally demanding jobs – that’s been really helpful for me to get back into things. I’m glad to see my brain still works!
It’s also been important to build up some kind of physical stamina. Some working days can be really long so I wanted to see what I am capable of without burning out and letting anyone down. Going to the gym and doing some basic exercise really helped me prepare me for getting back to work.
So after you’ve worked, do you have to have some downtime? How do you manage your energy levels?
It’s great that I can pick and choose when I work. If I can see a week is getting busy, I’ll make sure the next is as empty as possible. As a freelancer, it’s still hard to turn work down! It’s the mentality you have.
But recently I was working seven days straight, and was offered a further four days on top of it. I had to say no. I knew that was too much just now.
It’s about the balance between needing money, wanting to get out of the house, and being respectful of what my body has been through and what it can take.
You’ve talked a bit about the physical aspects and practical aspects of the return to work, but how did you feel emotionally?
I was excited but a little apprehensive. Previously I’d worried that stress in work contributed to me getting ill in the first place. I was also thinking, ‘Is this the right job for me? Do I want to be doing this any more? Maybe I want something different.’
I haven’t come to a resolution as yet. Maybe I do want to try something completely different after being through a transplant; a new challenge.
What do you find stressful about your job, after your return to work?
On most of the jobs, people are great. But there are some jobs, where people can be quite rude and abrasive, and you just have to put up with it as they are the decision makers and bill payers.
After all my treatment and being ill for so long, I just don’t want to be around that. It doesn’t help you maintain a positive mindset.
My parents say, ‘You’ve worked for so long building up this career. Why change it all now?’
I’m not going to change things too quickly, but I am evaluating my options. My perspective and priorities are quite different now.
People get stressed out about the colour of a carpet on a stage, or the layout of some chairs and I just think, ‘Come on, guys; there’s more important things in the world to be worrying about!’
For more information about the return to work, read The Way Back To Work – a report featuring more real-life stories from people who’ve been through a stem cell transplant.