For some patients, their side effects mean that a return to work post-transplant isn’t possible. This can be short term, but can also go on for much longer.
Billie in the patient team spoke to transplant recipient Ceinwen (26) about her experiences after she had a stem cell transplant to treat aplastic anaemia.
How long has it been since your transplant?
I had my transplant 6 years ago, at the age of 20, for aplastic anaemia.
I was at uni when I was diagnosed, and I had in my head that after treatment I’d go back full-time.
My consultants advised me to go back part-time, as they thought this would be more manageable, and I was less likely to get sick. I ignored them because I was desperate to finish at the same time is my friends, to catch up on what I’d missed, which I was never going to be able to do!
But I tried anyway and I soon realised that I couldn’t cope. I had to have naps in the day and I was just so exhausted. I kept getting infections, too.
In the end I went part-time and it took me three years to finish my degree. It was really tough but I was determined.
What have your consultants said about your ability to return to work?
I told them that I’d like to work, but they were very apprehensive, as they saw how difficult I found uni.
I volunteer with the charity CLIC Sargent, and an internship came up that I thought would be perfect for me. It was three days a week, and only an hour away in Bristol.
How was the internship?
It was tougher than I thought it would be. Being in a busy, noisy office for five hours was massively draining. It was difficult for me to find a balance of being able to do the work, concentrate and still have the energy to get home. It also made me realise how little work I actually did when I was at uni!
I had to make adjustments to manage. At first I went along, as I do, pretending I was coping, but I eventually had a one-to-one to tell them I was basically working the three days with them and having to spend the next four days in bed as my fatigue was so bad.
Did you complete the internship?
I did, and they were amazing and supportive. They let me take it even more part-time, and extended the length of the contract. It made me realise how much further I’ve got to go before I can do a job like that.
I’ve spoken to my consultant a couple of times about how difficult it is to find some work and continue to be on Employment and Support Allowance (ESA). If you work, you have to be on a certain wage and only do so many hours, and the jobs I can find that fit those criteria are basically shop work.
Which I I am not fit for, as they involve standing, lifting, and lots of noise, all of which have a massive effect on my fatigue.
It sounds like you’d like to return to work, but are restricted by your benefit rules, as the jobs you can get don’t have the adjustability you need for your health conditions.
Exactly that. And because I’ve found that, I choose to volunteer. To engage in something positive that I can do and enjoy doing. It’s on a really part-time, ad hoc basis, which works miles better for me.
Tell me about your volunteer work.
I now volunteer one day a week with CLIC Sargent; not in the office, but for their clothing range called Fix Up Look Sharp, who upcycle clothes. I spend my time sorting through fabrics, cutting patterns, and just helping out. It’s really cool; it’s arty and fun and a good way to get involved.
I also work with them on their patient participation project which actively influences the charities decisions and as well as other charities.
I help at my local church, where I have been doing some production-working with their lights and sound system.
Do you get a lot from it?
I love it, knowing that I am contributing.
It also helps me to plan my week and know when I am going to have to rest. Otherwise I’d be feeling sorry for myself, thinking, ‘Everyone I know is at work right now and I have no life.’
It’s a weird routine, as it’s not regular and you can turn down a shift, but that’s a good thing when you live with fatigue and other complications of transplant. For example, one day I forgot to do my weekly infusions at home and so I had to cancel my volunteering plans. (As I kinda need my infusions or my immune system doesn’t work!)
How do you find being on benefits?
I grew up thinking I would never be on benefits; I didn’t want to be one of those Jeremy Kyle mums. That was my view of people on benefits, that they were just lazy. I didn’t even consider people with health problems, which was naive of me.
I thought I’d be on benefits for a short while after being sick and that was how I was OK with it in my head; ‘This is temporary.’ Never did I think that six years later I’d still be on them.
I find that hard sometimes. I don’t want to be on them but I know I have to be.
Like everyone who is on benefits, I fear that brown envelope landing on the mat one day, saying that the government is going to take them away.
It’s a massive fear. You know that they could go…and then what would I do?
I live in a really cheap rental house in Cardiff, which is lucky, and my dad is really good and checks in regularly to see if I need money.
But I like to stay independent, so when he calls I am like, ‘Dad, I’m fine, don’t worry!’
I’ve got used to living within my means. I’m not particularly materialistic – if I was, I’d really struggle. What I generally spend any spare money on is other people and going for coffee. It must be really hard to adjust if you are working and then suddenly have to live on ESA, as it’s not much, but I’ve only ever known this, really.
I do get frustrated when my friends ask about me coming on holiday, and I have to say, ‘I won’t have the money for that.’
Do you think about the future at all?
I don’t really know where I am heading, which is a bit of a pain in the bum as I’d love to be able to say, ‘I have this dream and this is what I am going to do.’
I don’t have that any more.
Before I was ill I wanted to be a teacher and I had a five-year plan. I knew exactly where I wanted to go for my training, and then I wanted to go and work abroad.
A new plan hasn’t come up yet. I am going to see my consultant in a few weeks which can be scary, mainly because of the progress you are expected to have made. They’ll ask me what I’ve been doing, and where do I want to be…and what’s my goal?
Being ill made me wonder how long my life is going to be. That isn’t something that happens to everyone. They dream their dreams when they are young, not really thinking that something could get in the way of that.
So I tend to live day-to-day now, I am happier that way. My volunteering gives so much and I am helping other people, which feels good.
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.