Beating the odds - returning to work after a brain tumour diagnosis

Fewer than 12% of those who are diagnosed with a brain tumour will survive beyond five years. The odds are 12-88 against, if you're a betting person. So simply being here to write about what it's like to return to work following a brain tumour diagnosis puts me in the minority.

November is a significant month for me. This month marks 3 years since I was told I have a brain tumour and 2 years since the 16 hour brain surgery to try and remove it. It's definitely the month I think about it the most, although now without the gut-wrenching dread of previous years. It's not quite the 5 years of the statistic quoted, but I'm feeling optimistic. Although I always feel the need to add 'touch wood', when I say something like this, for fear of jinxing things in the most deadly game of roulette I have ever played.

I was diagnosed with a type of tumour called a Meningioma, which is usually benign and offers a much better prognosis than other types of tumour. But of course I didn't influence that - it was simply one of the first few spins of the wheel that I played. My Spheno-Orbital Meningioma is in a tricky location, with a tendency to invade nearby structures, which means that I have already had part of my skull reconstructed during the eviction of the invader and the main concern is for my vision. It also means that I can't completely get rid of him, so there will never be an 'I'm cured' moment.

I went back to work about 10 weeks after my surgery. It was paradoxically, easy and hard. Easy, because it wasn't as physically challenging as I expected it to be - the world deciding to embrace hybrid working helped here, so it turns out that I can thank covid for something after all! Hard, because I struggled to settle back into work. My team had barely noticed my absence under the (brilliant) temporary stewardship of Andy Eastham and we all struggled to adapt as I tried to find my place in the team again. The success of building an incredibly strong team didn't feel as sweet as I expected it to and I actually felt like a spare part. Whilst I loved my role leading Testing and Commissioning on TfL's Four Line Modernisation Programme, it didn't take me long to decide that it was time to move on.

There are sadly a good number of people trying to navigate their was through a life changing diagnosis, whilst holding down a job. For many, the financial reality of the situation demands paid employment, whilst for others the distraction of work is necessary to manage mental health. Both were true for me, but the whole emotional experience of the previous 12 months meant that a very different person was emerging.

I've always been a pretty confident person, but this reached a new level, as the reality of beating brain tumour surgery left me unafraid. With a fire in my belly, I started looking a for a new job which had to do one of two things (and ideally both) - I wanted to learn new things and I wanted a bigger leadership role. I had a few false starts. Finding myself in an interview only 4 months after huge brain surgery led to what I can only describe as an emotionally charged caricature of me, sitting in the hot seat! A wonderful opportunity to work overseas was tearfully abandoned when I realised that I had to remain in the UK for the short/medium term for my follow up care. I had a huge setback when one of my colleagues was preferred over me in a big leadership role on my own programme. The rational part of me totally understood that she was a fabulous fit for the role and undeniably talented, but the emotional part of me was hurt and humiliated. It took all my strength to bounce back from that, even stronger and show everyone that despite everything, I was destined to do more in my career.

I have now been the Head of Business Programme for a large corporate change programme for 5 months. I'm doing something completely different to before, learning new things every day and it's a much bigger leadership role, so I got what I wanted. Finding the right balance between raising awareness of people living and working with brain tumours; and being that woman who always bangs on about brain tumours, is hard. I'm a natural over-sharer, so I suspect I've not got it quite right. But my intentions are good. I have a high profile role in a big company and I'm in a position where I can use my experience to do good things and people will hear me.

So the whole point of this wasn't actually about me, but to tell you the next chapter of my story, to try and help others. I'm in an incredibly privileged position - I have a wonderful husband who loves me no matter what; I have a secure job and an understanding boss who gets me. I can speak out and not fear the consequences of my words at home or at work. Not everyone has this luxury. In fact many people feel they have to hide the impact of their condition for fear of losing their job or their partner. But the truth is, unless you've been incredibly lucky, there is an impact if you are living with a brain tumour or have had brain surgery.

Unless you scrutinise me very closely, you won't realise that I have any struggles in my day to day work. The professional side of me does my best to suppress these and hope no one notices, because my desire to progress my career is stronger than my need for sympathy. By a country mile. Very occasionally, when I feel safe, with people that I trust, I will have a good old cathartic moan up about the things that frustrate me.

The physical impact is the hardest to hide and the most embarrassing. I am frequently assured that no one notices that my hair no longer parts neatly and that one side of my head is completely misshapen, yet it's the first thing I examine on any photograph of me. Nerve damage means that I can only type with one finger on my left hand, which I have learnt to compensate for, by typing more quickly with all my fingers on my right hand. My surgeons say that my vision is surprisingly good and is currently beating their expectations. I now have my driving licence back, which is an unachievable goal for many and I could write a whole article about my experience with the DVLA! But make no mistake - if you're walking past me and I don't have any glasses on, I have no idea who I just waved at!

My memory's not quite the same, but it's really hard to explain how it's different. Everything is in there, all of my memories, but I can't always reach what I'm looking for. I often lose patience trying to remember something and just give up. It really helps when the person I'm speaking to is actively listening and can offer a prompt. Complicated questions are unhelpful too - it's much easier if you just ask one at a time. This can make interviews particularly challenging - ask me a complex, multi-faceted, vague, competence based question and I will likely meet you with a blank stare! And whilst we're on the subject of interviews, let's talk about reasonable adjustments. A standard reasonable adjustment for anyone brave enough to declare a disability is likely to be an offer of additional time. How's that going to help me? More time for me to painfully ask for the question to be repeated (again)? I'd far rather you asked simple questions, one at a time. Or write them down so I can refer back to them when I forget.

I clearly remember being at University 25 years ago and my Professor saying that an interview was one of the worst possible predictors of future success in a role, but we do it because it's practical and fair. The last 25 years have seen a much more sophisticated understanding of inclusivity and fairness develop and I am genuinely surprised that we aren't questioning the fairness of interviews and the lazy reasonable adjustments offered to mitigate this.

I have a strong desire to give something back to the community of people living and working with brain tumours; and the most obvious way I can think of doing that is by raising awareness and by fundraising. This article attempts to do the former and I have been working with Brain Tumour Research on the latter. The low survival rate for brain tumour sufferers is largely attributable to inequalities in research funding and Brain Tumour Research works hard to address this.

I don't know why I have a brain tumour, or whether I could have done anything differently to improve my outcome. My Neurosurgeon can't even tell me whether hormone based contraception is a good idea when living with a tumour that occurs mostly in women and with a strong suspicion that hormones are somehow involved; telling me simply that more research is needed.

All brain tumour facts and statistics quoted should be attributed to Brain Tumour Research