Working with cancer: ‘having a manager that I can speak to and is not afraid to have those bigger conversations is really helpful’

Louise Boston, Strategic Health & Wellbeing manager at E.ON is in a unique position because she’s living and working with cancer, and is working in a Wellbeing role. This gives her a valuable insight for other Wellbeing leads about how best to support those employees working with cancer or another chronic condition.

Given the number of employees working with chronic conditions is due to increase significantly, due to improvements in treatment as well as an ageing workforce, this is an issue employers must find ways to address. We caught up with Louise to ask her for her recommendations based on her lived experience, as well as experience in the industry.

What do you think is your biggest learning about relating to employees working with cancer?

Being able to speak openly in the workplace is really important, as is realising that everyone is an individual; what might support me is going to be very different to what might support somebody else. 

We require different adjustments to support us. Some of us will find being in work really helpful, as I do, because it almost becomes a distraction from the treatment, whereas others will need time away from work to deal with it.

How do you feel about doing a Wellbeing role and having a chronic disease?

Sometimes I think it helps, on the basis I can relate to other people, and others can relate to me because I don’t hide anything.

When I send out emails to my Wellbeing Warriors I’ll tell them how I’m doing and I’m honest about saying ‘look, you’re here to support me, I can’t do this all myself, I’m not in the same position I was five years ago, so you support me, and I’ll support you’.

I’ve definitely had to change my role and recognise I can’t do everything that I once perhaps wanted to do.

How important has your line manager been?

Really important. I’ve found having a manager that I can speak to and is not afraid to have those bigger conversations is really helpful.

Whenever I have an  appointment with my oncologist, I notify my line manager of exactly what’s been said, so nothing is hidden. I’m not afraid of talking about it and I find that’s important because it means line managers can be honest back.

We speak honestly all the time about how they can help me, what adjustments I need to allow me to work from home due to treatment side effects, etc. 

When I got my last oncologist update, we were talking about end of life and palliative care and the fact that I don’t have much longer and it could be months rather than years. To have the company support me was huge.

Do you want colleagues generally to talk to you about it, or do you just want to get on with it?

I’d much rather they talk to me than didn’t. If they don’t talk to me, I know they’re thinking about it and would like to.

I find the more relaxed I can be having this conversation with colleagues, the more they will ask questions. I think I’ve probably got that from my background in Occupational Health.

Do you think employers should treat those employees with Primary and Secondary Cancer differently?

There’s a very big difference between Primary diagnosis and Secondary. Trying to deal with a Primary diagnosis is hard enough, but with Secondary there’s a recognition that there is limited light at the end of the tunnel… so you’re going to go through all that treatment and the likelihood is that you’re not going to recover and treatment will last a lifetime. And that’s something that, emotionally, is tough and has to be dealt with in a different way.

So for me, I have chemotherapy every three weeks. I have scans every 12 weeks. I have blood tests every three weeks. And that’s for life. That’s not going to get better. And when the treatments stop working, I’ll have to get my head around a new or different line of treatment. So yes, I think there needs to be a different approach but not sure what.

What has helped you most dealing with the tough emotional aspect of a Secondary diagnosis?

Having a manager that said to me that they were going to support me. That was a huge positive because, obviously, the first thing that you start thinking about is the financial aspect of it – or at least, that was the case with me. ‘If I’m not at work, then what happens to my life insurance, which I get through work?’ was one of my first thoughts.

Work has also been really supportive of my family as well, which has become really important. They know my husband’s name, they know where he works, they ask how he is feeling. That makes all the difference.

How important are employer support services, like EAPs?

They can be key because not everyone wants to access things like MacMillan, or some of the specialist cancer services, and some hospitals provide better services than others. My husband can also access the EAP, which is helpful.

I’ve never found the need to access any of their services around emotional health.

Why do you think that is, that you didn’t require the mental health support around your diagnosis or experience? Did you not feel the need for this even when talking about end of life care?

No, I guess because of my background. I worked in Occupational Health for 30 years and spent a long time supporting other people through similar situations . That’s not to say I haven’t been through some of those difficult emotions – because I absolutely have – but I think because I’ve supported other people through it I can probably guide myself through those emotions in a different way.

That’s also not to say I won’t need support in future and if I do, then I’ll access it.

Probably the biggest shock was when the doctor asked me a couple of weeks ago where I wanted to die. That probably struck me harder than anything else has, but once I got my head around it I started thinking practically. Asking – what do I want? What does my husband want? What do my family want?

What do you think of the language around cancer – like we’ve just had Cancer Survivor Day, for example?

I don’t like words like ‘fighter’ because I’m not fighting anything. I have no choice.

‘Survivor’ is interesting because I’m also not a survivor; I’m going to die, probably not too far in the future, as I have now reached the palliative stage of my treatment. Language is important and the words I’d choose would probably not be the same as somebody else.

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