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Insights Living with CML

Throughout October, as part of National Inclusion Week and AtkinsRéalis ’s first-ever global ED&I month, we’re publishing four interviews with colleagues who are living with a hidden condition to help shine a light on their experiences and what we can all do to support them.
image of Claire smiling
This week, we’ve spoken to Claire Ashmore, who is a consultant in our ADS&T business. Claire was diagnosed with Chronic Myeloid Leukaemia (CML), a rare form of blood cancer, in October 2015. In our interview, Claire talks about living with CML and the many side effects of the treatment she receives, as well as the impact her diagnosis has had on her life.

Claire, could you tell how you were you diagnosed with CML?

CML is slow in progressing, which means I’d had leukaemia for about three or four years prior to being diagnosed. My diagnosis was found during an eye check at the eye A&E clinic as I had a black spot in my vision. The consultant couldn’t understand what was wrong apart from my blood pressure being sky high, which had caused my blood vessels to pop behind my eyes, hence the black spot in my vision. After 14 vials of bloods, they discovered I had CML. Having CML 20 years ago was basically a death sentence unless you found a bone marrow donor and had a transplant. Luckily, nowadays there is treatment to supress the cancer, but there is no cure.
image of pills
I take two chemotherapy tablets every 12 hours, and I need to take these for the rest of my life. Although these chemo tablets are a marvel and keep me alive, they also bring many side effects that I have to live with day in and day out. These include chemo brain (thinking and memory problems that can occur during and after cancer treatment), chronic fatigue, diarrhoea, joint pain, cramps and nausea, just to name a few.

How is your personal and professional life affected by this?

From a professional standpoint, my working life is mainly affected by my chemo brain and chronic fatigue. People expect you to be on the ball from 9am to 5pm and that’s sometimes difficult, as at times my fatigue and chemo brain make it almost impossible for me to function.

From a personal perspective, it’s difficult to make commitments to do things, whether that’s going away for a weekend with the girls or a night out in the local pub, as I never know how I’m going to be feeling on that day.

Are there challenges you’ve noticed in the workplace which you’ve had to adjust to as a result of your condition?

Yes, definitely – working with chemo brain, mainly! I’ve had to adjust by accepting that I can’t always be on the ball, which is a really hard thing to admit to yourself. It’s hard to accept that your brain just won’t work how it used to. There are times when you just can’t recall what you were going to say or something that’s happened. Hence, I write everything down so I don’t forget! And it’s not the same as just forgetting and then remembering later, as the remembering later never comes; your brain just becomes a black hole! I find most people understand, but deep down I do worry that they don’t, and that it’s going to be held against me, and I'll be judged for it.

My chemo brain is worst in the mornings. My head feels foggy and full of cotton wool until about 11am. So, if possible, I avoid meetings before that time, as I know that I can’t think that straight. I mentioned at the start that another side effect is diarrhoea, not a subject people like to talk about, I know (lol). Again, for me, this happens in the mornings. This means that when I’m working from the office, I’m often not able to get in until about 9.30am. I’m thankful that I work in a place where it’s accepted and not deemed as being late!

Has the COVID-19 pandemic has any particular impact on you as a result of your condition?

COVID-19 has its pros and cons in terms of working from home. The pros are that I don’t have my old commute, and I can be at my desk at 7am and not worry about having diarrhoea at work. This has enabled me to compress my hours and do five days in four, which has helped with my fatigue.

The cons to COVID-19 are not having the usual social interaction in the office, and it’s presented its own challenges in terms of my mental health. Being a single parent, whose son has now left for university, means I’m spending more time on my own. But I try to get around this by having virtual non-work coffee catch ups with colleagues every now and then.

How do you like to spend your time outside of work, and does your condition affect how you approach or experience these things?

I do quite a lot outside of work. I’m the event director for the Tewkesbury parkrun and one of the Gloucestershire parkrun ambassadors covering Cheltenham, Gloucester North and Gloucester City parkruns, all of which keep me busy. Even though there is no parkrun at the moment, there’s still lots going on behind the scenes.
image of Claire volunteering at Parkrun
As an event director, I don’t have to be at parkrun every Saturday morning. But as we’re all close friends within the team, we generally turn up every Saturday anyway. If I’m not on the rota, I’ll join the team for breakfast after parkrun while we do the results. That way, I still get my Saturday morning lie-in to help with my fatigue. I love being part of a local community, but it does take its toll on you; my Saturday afternoons are normally spent snoozing on the sofa to recover.

I’m also part of a triathlon club, so I’m out swimming, running and cycling. Exercising while you’re taking daily chemo is hard, believe me! I’m now a lot slower than I used to be, and I’m always at the back of the pack. But I don’t care as I love it and how it makes me feel, so I won’t be giving it up anytime soon!
image of Claire with her friends
I also manage and organise the Tewkesbury Wine Run where we get up to 200 runners all in fancy dress. Participants can run, walk or stagger (lol) a 1k lap up to five laps around the scenic lake of Croft Farm. After each lap they have the option of a large shot of wine or water. I put on a disco afterwards and food is served for the runners and any guests they bring. It’s a great Saturday evening that myself and my team put on every October and all the profits raised are donated to The Leukaemia & Intensive Chemotherapy Fund - they are the clinic that manage my leukaemia. We normally raise about £2,000 each year from this event, apart from this year due to COVID-19!   

How can colleagues and the business support those who live with similar conditions?

Based on my experience, I’d say there is room for improvement in terms of how the business responds to a diagnosis like mine and a lot of that centres around educating and equipping line managers. A more personable process which focuses on developing empathy, rather than just expressing sympathy, is really important when supporting employees to manage their condition at work.

I’ve been an integral part of a team on my client account where we’ve worked with HR, the disability network, welfare and line managers to improve the process for when employees are diagnosed with a chronic illness, and we have made some great steps. This is something I’m passionate about, and I’d like to look at implementing something similar within our business.