Here is my latest British Medical Journal blog on fear of cancer recurrence.

Out now, detailed article on my research on cancer recurrence and progression. This article was first published in Private Practice, March 2023 issue, published by BACP. ©

"The fear never goes away- you just have to adapt and learn to deal with it. Life is no longer the same. No one really helps you voice and come to terms with these enormous feelings."- Anon, FOCRAP Survey, Galgut 2022

“Professionals work on statistics. Someone has to be that statistic however low and I feel they don’t understand what they see as an illogical fear that I will be that statistic."- Anon, FOCRAP Survey, Galgut 2022

In this video, I talk from my dual perspective as a counselling psychologist and as a person who suffers cancer’s long term effects, about why I set up this website.

"Our culture has a narrative about cancer that emphasises triumphant return to normal. I think that makes patients feel like they need to speak about their experiences as if they are stories with a definitive ending, even though cancer is mentally, and very often physically, something that never fully goes away.

This leads to medical professionals not understanding what we really go through, flawed research models with skewed results, and intense feelings of isolation for us patients who don’t know we are not alone in our fears.

Cancer never stops, even when you don’t know if it is still there. It’s a ghost that is always in the room with you. Sometimes you feel its presence and sometimes you can forget about it for a bit. But- even for those of us who are early stage - cancer is a permanently altered state of being into which we have been unwillingly thrust, not a story with a clean and definitive end point." - Anon, FOCRAP Survey, Galgut 2022

Throwing a truthful light on life longer term, living either with a still present cancer or beyond it.

Why this website?

I am setting up this website because people have asked for a resource that acknowledges, unequivocally, that life living with or beyond cancer is no bed of roses for many more people than is often recognised. I also hope that people working in the cancer field will find this website of use, to help them offer realistic, helpful support.

People get so fed up of being told to move on and having their feelings dismissed

People get really fed up of being told to stop complaining, move on, get over cancer, in ways they find impossible. Indeed it IS impossible to get over and move on, if you suffer longer term, after the initial treatments end. And many do. Amazingly, even people who are living with a still present cancer are expected to do this, even though most in this situation have to have invasive and unpleasant treatments to keep them alive.

Even those who are fortunately free of cancer after the initial treatments, almost always have to endure further treatments to try to keep the cancer at bay, eg. hormone treatments. These often have nasty side effects that affect quality of life.

Cancer treatments save lives but often cause nasty, long term effects

Additionally, treatments themselves can often cause nasty long term, physical effects. These are thankfully becoming a little more accepted, rather than swept under the carpet, but the extent of their prevalence is often underestimated and effects on people's quality of life are often much more extreme than is generally accepted.

Fear of cancer recurrence and progression is very common but often doubted

One major long term effect, that is pretty universal, is the focus of this website, fear or often enough, extreme fear of recurrence or progression. It often amazes me that people doubt the prevalence of this. However, the validity of these feelings is often brought into question in ways that beggar belief, but have become dominant beliefs over time; conventional wisdom, in fact.

Please explore the information available elsewhere on this website

Please see the results of my recent survey on peoples’ thoughts about fear of cancer recurrence and progression, and my book on Living with the Long Term Effects of Cancer, by pressing the relevant buttons on this website.

My heartfelt thanks to Sue Medley, Louise Bourgeois and my focus group for their help and support with developing this website.