Ovarian Cancer and Brain Tumour Awareness Month: Cancer, disability and the challenges of returning to work

Written by Clare Hollinshead

March marks both Ovarian cancer and Brain tumour awareness month and unfortunately, I can say that I have experienced both.

Receiving a cancer diagnosis as a younger person in work with small children in my care, shocked my world – in fact it brought it crashing down as I received an incurable diagnosis and found myself at the age of 38 having to wind my life down – death admin was the priority as I planned to retire early and spend what time I had left with my children who were all in primary school. I can say without any hesitation that cancer has impacted hugely on every area of my life and I am forever changed because of it.

After four and a half years of intensive cancer treatment and access to some new medications which are transforming the cancer landscape as we know it, I am now somewhat of a guinea pig in the field I am being treated in. In fact, my death admin was a little premature. I am not cured (yet!), but I am in remission and hopeful for the drugs to continue to keep me cancer free for some time to come. I am also in a new stage, a new season if you like – one of needing to be back in the workplace. I can’t express how much I grieved giving up a job I loved to concentrate on my health – it really stung.
When contemplating returning to work, I sought out a new role having decided the last one would not suit me anymore. I accepted that I have different needs – nothing wrong that but the adjustment has been hard and I wanted to try and explain a little about what returning to work feels like after such a traumatic and life changing event.

In looking for a new job, I was worried I would have been left behind with changes in regulation, technology and culture but actually, I enjoyed the job interviews I did and was reminded that I still have lots to offer; I am still passionate about using my knowledge and experience for good, I can still learn and I can still contribute – in fact, I have a new lived experience to offer which I think can only be an asset in a country where one in two people will be diagnosed with cancer and many of us are living longer with it as a chronic condition rather than the immediate death sentence it once was.

Treatment has left me with side effects and my disability (I’m now covered by legislation) is unseen but it’s very real to me and means I need to make adjustments that are different to my pre-cancer existence. I don’t want to spell them out, but I know the impact they have and the strategies I have in place to address them. I often get confused looks from people when I use disabled bathrooms as there is nothing to mark me out as different, but that’s the point with equality and protected characteristics isn’t it – none of us really know what’s going on for those we meet and we shouldn’t assume we know. We shouldn’t expect full disclosure from anyone to satisfy our need to know the bathrooms (or whatever) are being used in the intended way.

I also struggle with fatigue; it’s real and it’s way more than being tired! I looked for a role where there is some flexibility in the working pattern. I have some autonomy of going into the work-place or working from home and can alter this as needed to meet both the needs of my role and my health. In return, I’m able to arrange my medical appointments and treatment so they don’t impact on my job, and I plan my leave to have regular breaks to ensure that I can cope. Using video conferencing technology makes places more accessible for me and I can invest my energy in my workload rather than on the exertion of travel.

One of the hardest parts of returning has been in knowing what to tell people. Four years is a long time to explain away and there have been lots of awkward questions asked of me when I’ve been completely open and honest but I’ve also felt lots of anxiety that I’ve not been honest enough when I’ve used clever language (never lying) to cover up my gap and situation. I don’t want pity or to be considered less able or reliable and I want to be known for doing a good job rather than carrying around a cancer label but in meeting new people in the course of my new role, I recognise that the innocent question lots of us ask – ‘what did you do before?’ – is tricky for people like me. What is fair to share for us both? What is an invasion of my privacy? Where is the boundary between taking a natural friendly interest and nosiness? Having said that, I do recognise that I need some consideration to be taken of my new needs and I want to show that others like me should be able to return to work too so I do try and embrace the opportunity to appropriately disclose my information. I wonder if change can only be truly effective if we all take the courage to be real with one another…

Equally difficult is the fear I live with of the cancer returning. The distraction of work is welcome and the need not to have to explain my situation all the time is important. I’m much more than a cancer patient as I’m sure you are much more than the label you find yourselves linked to. I’m happy to answer questions, but I’m also happy when they’re left unasked. I know this looks like a lot of contradictions, but we’re not clones of each other and we all have differing perspectives on how we like to share those parts of our lives that are more difficult to discuss.
Perhaps the answer is just always one of dignity; treating each other sensitively and kindly and embracing the presence of diversity and equality in our services, in all its forms.

Cancer has been a traumatic experience for me, and in the same way we approach people we serve in accommodation and support services in a trauma informed way, I’m personally very glad there are laws and expectations that we do similarly in the workplace – difference comes in all shapes and sizes and needs that come with that must be welcomed and embraced; in seeking to employ people with lived experience of health related trauma, I know that the workplace can be a much more vibrant and effective place to exist. I need to work; it gives me so much more than a wage packet and I’m very glad to have found an employer willing to see the skills I have before the medical needs I present with.

Clare Hollinshead
Housing Development Manager

Work and cancer – Macmillan Cancer Support
Work and cancer | Maggie’s (maggies.org)