A Last Hurrah? Reflections on a Terminal Diagnosis
by Stephen Bevan
So, my cancer came back.
Almost exactly four years after successful surgery to remove a tumour in my oesophagus I had started to allow myself to feel that I could look ahead with a degree of optimism. That should have been a warning. Cancer, as we know, can be a wily opponent.
Two months after being told that my cancer is not curable and getting used to the idea that my abdominal pain will need to be managed by palliative chemotherapy, I feel a strange sense of relief that the uncertainty of the last few years has at least been diminished. Like many others I’ve had the haunting suspicion that being declared ‘cancer free’ is little more than a temporary reprieve.
Even the most optimistic among us I find it hard to banish the doubt for long, especially if your post cancer existence is punctuated by regular scans or blood tests. So, what happens now? With chemo my oncologist says I might get up to one more year to draw together the loose ends of my life, my job and my relationships. What you very quickly find is that there is no convenient handbook which guides you, step by step, through all of this. And the emotional impact of getting such news on both myself and my family has made sequential thinking and planning doubly difficult. So, what have I learned about navigating my way through this most recent and difficult chapter? I offer three observations.
The list of things I will miss out on by failing to make it to 65 is enormous. A normal retirement, seeing my seven beautiful grandchildren grow and develop, sunny trips away with my brilliant wife Jenny, other precious family times, getting a bus pass and my state pension, running barefoot and intoxicated through the sunlit uplands of Brexit. It’s very easy to feel cheated and betrayed by cancer. It can feel like it is taking a perverse pleasure in rubbing your nose in what remains your ‘bucket list’ – mocking your foolishness as you hope to be allowed a few last indulgences. But I quickly realised that becoming preoccupied by regrets is just a gateway to gloom and negativity. I’m lucky enough to have lived a full and happy life with a great career and few really big things that I’m aching to achieve. Far better, I figure, to devote my remaining energy to drawing my loved ones close and enjoying some cuddles and laughs.
Help others connect
This blog is my first public acknowledgement that I have a terminal diagnosis. But even among family, friends and colleagues it has become clear that many people find it hard to know what, if anything, to say to me. I fully understand why this is the case. Nobody wants to say anything gauche, insensitive or patronising. To be fair, most people avoid these traps and I’ve had many simple, short, kind and authentic messages just expressing regret and wishing me well. Others have picked a particular memory to remind me of good times past. Others have chosen to stay silent, and I’m OK with that too. Many people have bad memories of cancer, and they find the whole subject just too raw. All I would say is that it’s usually better to connect than not. Some of the most touching messages have been from people who say ‘I had no idea what to put in a message, but just wanted to reach out to you’. They have nothing profound, lyrical or consoling to say but they realise the power of a fleeting and kind acknowledgement.
Let go a little
I heard someone recently describe living with terminal diagnosis as being like trying to pilot an old plane through dense fog with no radar and an unknown amount of fuel left in the tank. If you’re used to living life by being in control of your diary, in control of your emotions and having the final say over big decisions which affect you, your career and your finances then a terminal diagnosis will turn everything on its head. Eventually, in my case at least, I’ve found that letting go of things I’d previously thought to be essential to be quite liberating. I’ve had some project deadlines in my job that I’ve had no choice to relinquish and the terrible guilt I’d normally get from doing so lasted just a split second. Letting go of ‘stuff’ that is suddenly unimportant frees up precious emotional bandwidth which I will have no trouble using.
I have a final thought about terminal illness and work. While I’ve been lucky to have been able to take medical retirement, I’m fully aware many others of working age are not so lucky. They and their employers must navigate some choppy waters to make sure that those who want to stay at work for as long as possible can do so with dignity and purpose. The key here is authenticity and dialogue. For some, staying at work represents a way of connecting with what passes for a ‘normal life’ for as long as that lasts. At the same time, the terminally ill don’t want pity or to feel that they are getting a free pass. A mature conversation with employers about how we can help ‘ramp down’ our working lives is all that is needed. Palliative care experts are pretty good at helping us to understand how our physical and mental capacities may decline as treatment progresses and as the final months approach.
I’m not planning on ‘checking out’ just yet, by the way. But if this ends up being my last word on the topic I’d like to register my admiration and thanks to my friends and colleagues at the Institute for Employment Studies (IES) and Working With Cancer who have made my cancer ‘journey’ all the more bearable through their kindness and compassion. In the end, this is all that matters.