Continuing to work with side effects

I’m 58 and I currently work as a professor at a university. I’ve had a great, enjoyable career in academia that has been really rewarding. When I got MDS, I was fortunate enough to have measures put in place by my employer that allowed me to continue working, but I think how I talk about and cope with my MDS daily also played a big part in me being able to do the work that I do. It hasn’t come without its challenges, and there are days where my body just says no, but I have found a balance between looking after myself and prioritising my health, whilst also confidently being able to continue my role.

I admitted early on that I was struggling with the diagnosis and what it meant to me and my life, and so I asked what support was available. My university were able to offer me counselling and that set me up with a good foundation to understand my feelings around my diagnosis, and how to create coping methods going forward. And then, importantly, I put what I learnt in counselling into action in my life.

It could be rest breaks, different tasks, different equipment - anything you can think of that would make things easier for you to do your job effectively. Ask yourself, ‘what do I need to do this role?’ It’s so important to be an active employee - someone who recognises what they need and isn’t afraid to ask for it. Sometimes it can be hard to see what’s holding you back and what you’re finding challenging, but figuring this out and adjusting for it can be game-changing.

I know some people are uncomfortable about using and hearing the word ‘cancer’ but the more we say it, the more it’s okay to talk about the realities of living with it. At first, I felt fraudulent about saying I have cancer, because I’m going to be here for years yet. But cancer looks different on everyone, so don’t feel you have to shy away from the realities of your own experience of cancer. I’ve found people react differently, some are open and happy to talk about it with me, whilst others feel awkward. This reflects them and not you, so don’t let it put you off sharing your experiences.

If your employers know what you’re going through, and how it affects your day-to-day ability to work, you may feel more comfortable in telling them when you need a day off, or when you need some time to rest. Having the appropriate adjustments can help you reach your potential at work.

I’ve heard people complain before that their organisation hasn’t been there for them and the first thing I say is ‘have you asked them for help?’. Yes, some organisations won’t be great at this kind of thing, but cancer is classed as a disability and that gives you certain rights at work. Your workplace has a responsibility to make reasonable adjustments to accommodate for your health.

You’re unique and the value you bring to your job is unique. It can be easy to forget that sometimes when you’re struggling with work and health. I felt like I was failing at first when I got MDS and couldn’t do everything I used to. Counselling really helped me to focus instead on all the things I can still do, and to find creative ways around doing some of the more challenging tasks. If you're interested in counselling, ask your hospital team first - they might have access to a counsellor for people with blood cancer.

I remember once saying to one of my sons: “instead of thinking what you’ve not got done today, what did you get done?” And I try to remember that myself when I’m feeling overwhelmed by all the things I need to do. I take the time to recognise my achievements, and it makes me feel more positive about my abilities and the value I add.

I get days of brain fog and times when the fatigue is like wading through treacle. Some days my work flows really well, and on others, I can hardly think coherently. I try to be gentle on myself in these times, and say right, this is a day I just can’t do this task so I’m not going to push it. I’ll try and do other tasks instead that require less brain power. I aim to rest before it gets too bad, and I often find that after a rest, I can complete tasks much more easily than if I had just pushed through.

I’m much kinder to myself now and I’ve learnt to set boundaries with myself and with my colleagues. I used to advise my students to take time out to recharge, but it took me time to put this into practice myself. These boundaries have stopped me from forcing productivity when I’m just simply not well enough, and it allows me to feel ready to work when it’s time. For some people, listening to your body may mean recognising you’re not well enough to work. Admitting this may be hard but the kindest thing you can do for yourself.

I’ve had to put this into practice myself. When I started at my current workplace, I was planning to get back into my teaching and research, having spent several years in senior management. Shortly after moving to another university, I took up the role of Head of School. This is a demanding position which requires a lot of physical and mental energy. Two years later I was diagnosed with MDS and following a spell in hospital I knew I wasn’t going to be able to continue in the role. This was a really hard decision but I had to be honest with myself that because of the MDS, I wouldn’t be able to do all that was required for the Head of School role. I would get exhausted a lot, and I’m on treatment, which can sometimes have side effects, and I’ve had spells in hospital. Because of this, I recognised I needed space to look after my health, including my mental health. I was honest with my colleagues about how I was really feeling and found they were supportive and respected my decision to step down from the Head of School role. The critical thing for me was they allowed me to do this with dignity as I felt I was letting people down having made this decision. I know now it was absolutely the right thing to do, as I have been able to contribute to the school and university in other ways.

If you’re struggling in your current role, and can’t see a way around that, it’s okay to accept that. Your health is too important to sacrifice for a job that isn’t working for you. For those on long-term treatment, it can be particularly important to have a job that works for you and the life you need to live to manage the cancer.