Living in the space between cure and end of life

I have just listened to an episode of BBC Radio 4’s The Life Scientific that left me feeling something I do not always feel when I hear cancer discussed in public: recognised.

Professor Adrian Crellin has spent more than 40 years working in oncology and helping to develop more precise radiotherapy treatments. He also lives with incurable cancer. In 2016, he was diagnosed with metastatic prostate cancer and became a patient at the cancer centre he had helped to establish.

His perspective is shaped by both his professional knowledge and his personal experience. Listening to him speak about life with incurable cancer felt refreshing, because he gave space to a reality that is often missing from the public conversation.

There is a space between being cured and being at the end of life. I have lived in that space since October 2015.

Something else that stayed with me was Professor Crellin’s reflection on what it was like to find himself on the other side of cancer care.

Despite his extensive knowledge and understanding of cancer, receiving his own diagnosis brought a visceral emotional response. He spoke about the rollercoaster of those initial moments and described his reaction as “catastrophising”.

That felt so familiar. When you first hear that you have cancer, your mind can race towards the worst possible outcome. Even when information and treatment options are available, the shock and fear can be overwhelming.

Hearing someone with Professor Crellin’s experience speak honestly about that response was reassuring. His knowledge did not make him immune to the emotions so many patients experience. It reminded me that catastrophising in those circumstances is a very human reaction.

He also reflected on how becoming a patient gave him a different understanding of what many of the people he had cared for experienced when they were diagnosed. Alongside medical knowledge and treatment, there is a person trying to absorb life-changing news.

When people hear the word “cancer”, the stories they often expect to hear seem to follow one of two paths: treatment succeeds, and the person is cured; or treatment stops working, and the person is approaching the end of life. Both are part of the reality of cancer. But they are not the whole story.

For some of us, cancer cannot be cured, yet treatment can help to manage it. We may live for years with the disease, with all the uncertainty, adjustments, treatment decisions, and ordinary moments that come with that.

Our experiences vary enormously. Some people live with significant symptoms or side effects; others have periods when they feel relatively well. Treatment options, responses, and circumstances differ.

There is no single way to live with incurable cancer, and no promise that it will follow a predictable course.

The words “incurable” and “terminal” are sometimes used as though they mean the same thing. For many of us, that does not reflect our situation.

An incurable cancer cannot be eliminated with the treatments currently available. It may still be treatable, sometimes for a considerable time. People’s circumstances can change, and the language used around advanced cancer can vary; what matters is understanding the individual and asking how they describe their own situation.

When those distinctions are lost, so too are the experiences of people living in the space between cure and end of life. We can find ourselves having to explain that we are living with cancer, while others assume we must be dying imminently. Equally, when we look well or continue to work, create, and make plans, the realities we live with can become invisible.

Professor Crellin also spoke about how common cancer is, and what advances in research and treatment could mean for the future. Cancer Research UK estimates that nearly one in two people born in the UK after 1960 will receive a cancer diagnosis during their lifetime. That is a figure that touches almost every family, friendship group, workplace, and community.

Advances in research, diagnostics, and treatment are changing what a cancer diagnosis can mean. For some people with advanced or incurable cancer, treatment can help manage the disease and allow them to live longer. As our understanding and treatments continue to develop, we may see more people living in this space.

Among those living with advanced or incurable cancer are people of working age: employees, freelancers, business owners, artists, carers, and volunteers. Many want or need to continue working, contributing, and making plans, although what is possible will be different for each person and may change over time.

Are our workplaces and communities ready to understand and support that reality? Support might mean recognising that someone can be committed to their work while also managing appointments, fatigue, treatment, or uncertainty. It might mean having an open conversation, making adjustments, or allowing flexibility without assumptions about what a person can or cannot do.

Some people may be unable to work, or may need to stop or change what they do. Their value is not defined by their economic contribution. If more of us are living for longer with cancer, then the way we talk about it, plan for it, and support one another needs to reflect that reality too.

I also want to ask those shaping workplace regulation and legislation, and those planning long-term health and social care: are the needs of people living with incurable cancer reflected in your decisions?

Are you considering what it takes to live with a condition that may require treatment, monitoring, and support over many years? Are people with lived experience being included when policies are designed, and are their different circumstances being heard?

Some people receive an incurable cancer diagnosis during their working lives, sometimes at the peak of their earning and tax-paying potential.

They may want or need to continue working, but face treatment, fluctuating health, or a lack of flexibility and support. Others may need to reduce their hours or leave work altogether.

These choices and circumstances have consequences for income, financial security, and access to care.

How can we, as a society, press for policy that recognises this group and responds to the realities of their lives? We can ask policymakers to involve people with lived experience, listen to their families and carers, and examine whether workplace protections, financial support, and long-term health and social care meet their needs.

I would welcome a conversation with policymakers, employers, health and social care professionals, and people living with incurable cancer about what needs to change. Our worth is not measured by whether we can work or pay tax; our experiences deserve to be included in decisions that shape our lives.

Living with incurable cancer can mean carrying an awareness of uncertainty alongside the business of being alive. There may be appointments and scans, waiting for results, treatment and side effects. There may also be work, friendships, family, love, grief, laughter, creativity, and plans for the future.

Some days the cancer is close to the surface of everything. On other days, life asks for our attention in entirely different ways. For me, acknowledging uncertainty does not mean giving up hope. But hope can change shape.

Hope may be for treatment to continue working, for fewer side effects, or for more time. It may also be for a good conversation, a creative idea, a meaningful experience, or the chance to make plans that matter to us.

This is what I think of as hope beyond cure: a hope that can sit alongside honesty, vulnerability, and the knowledge that we do not have all the answers. It does not demand that we feel positive all the time.

These are some of the ideas at the heart of Not Dead Yet?, the multidisciplinary project I began during my Sanctuary 2026 residency at Lighthouse Poole. The project explores the complex realities of living with incurable cancer, bringing together artists and creatives with lived experience. It offers space for stories that are not always easy to fit into familiar narratives, including those of people who care for, or have cared for, someone with incurable cancer.

During our three-day residency, we began exploring how creativity can help us express experiences that are sometimes difficult to put into words. There was room for honesty, connection, and the many different ways each person understood the subject.

Listening to Professor Crellin reminded me how important it is for those conversations to reach beyond the spaces where people already understand. His honesty about his own response to diagnosis reminds us that fear and uncertainty can be part of the experience, whoever we are and whatever we know. It can make someone else living in that in-between space feel a little less alone.

We need more conversations that make room for the full range of our experiences: the difficult and the joyful, the uncertain and the ordinary, the things we have lost, and the things we continue to hope for.

Because we are here, living our lives, and our stories deserve to be heard.

Do you know someone living with incurable cancer? Or has someone in your life experienced cancer, whatever the stage or status of their disease? Perhaps you have your own experience you would like to share. What do you wish more people understood?

Please feel welcome to leave a comment if you feel comfortable doing so. Every story is different, and listening to one another can help us make space for more honest and compassionate conversations.

We are still recruiting founding Directors to help shape the future of Not Dead Yet? as we work towards establishing a community interest company. If you are interested, or know someone who might be, I would love to hear from you.

Thank you for reading, sharing, and helping us bring greater visibility to the many ways people live with cancer.