1 in 14 men and 1 in 19 women will be diagnosed with bowel cancer during their lifetime; it is treatable and curable, especially if diagnosed early
Therapist Vic Leeson shares her own experience of caring for a loved one with cancer, and offers tips for families who are affected
If you are struggling to come to terms with a cancer diagnosis, find a therapist here
“Are you scared?”. This was perhaps the only emotive question I asked my lovely Dad after his diagnosis with bowel cancer in the Summer of 2004. His terminal diagnosis was confirmed on 5 August, and he died eleven days later.
None of us really knew how to speak about what was happening. In the twenty-two days prior to his terminal diagnosis, and the eleven days after, we concentrated on the practicalities of treatment and became consumed by a medical world – appointments, treatment options, medicalised language, even the intricacies of the hospital parking system. A world we had not needed to inhabit nor negotiate before. At the same time, we instinctively did whatever we could to meet my Dad’s most basic needs – food, water, toilet visits, along with the provision of items of agricultural-based literature to ease his boredom and provide much-needed distraction. Yes, many tears were shed and everyone’s sense of shock was evident but we didn’t talk about how we felt. So why didn’t we talk more?
My lived cancer experience is that of a carer and loved one of someone with a terminal cancer diagnosis, not as a cancer patient. But through this experience and in my work as a psychotherapist supporting those living with a cancer diagnosis, I offer the following observations and explorations. These are by no means definitive but may go some way to starting a conversation about the possible psychological impact of such a diagnosis.
Cyclical negative thoughts
The overwhelm of being faced with a serious illness, as well as being confronted with the uncertainty that a life may end, activates our survival mechanisms of fight, flight or freeze. The shock, panic, confusion of our emotional self, transitions into the more cognitive led self. A disconnect between what is felt in the body and what is consciously thought in the head enables both patient and loved ones to manage the situation they are thrown into by providing a much-needed defence mechanism.
Whilst this disconnect can provide a useful coping mechanism it can also bring a cognitive concentration so powerful that it feels difficult to move away from numerous negative thoughts. For example, “I know my next results will be negative” or “It will be just my luck that this latest treatment doesn’t work”. When thoughts are then both negative and cyclical these can have a detrimental impact.
It is important to remember that thoughts aren’t the same as facts. Physical activities and breathing exercises are vital to move away from the cognitive led self and connect to the body. Any physical exercise, even the most gentle of movements, will change the body’s physiology prompting a quietening of those cyclical thoughts. Do this exercise in nature and this can further aid a sense of greater wellbeing and connectedness.
Whilst emotional disconnect will offer protection from what may be experienced as an emotional overwhelm, the emotional disconnect cannot be sustained. What am I feeling? Why am I feeling this? Will these feelings go away? What do I do with them? Do others feel this too? Whatever is felt is normal and can change from day to day, hour to hour, minute to minute.
Common feelings post-diagnosis can include denial, anger, fear, worry, sadness and a sense of injustice. The sheer volume of all these feelings may feel overwhelming but taking time to notice and acknowledge emotions can be beneficial. Even if it’s hard to label an emotive feeling, consider what is the physical feeling? What is your body trying to tell you about how you feel?
Not paying attention to feelings can become a problem; suppressed feelings can negatively affect those around us, and can prompt certain behavioural changes as we try to contain all that we feel. Ensure that you have people around you who you experience as empathetic and good listeners. Share your feelings.
Sense of loss
A diagnosis can bring with it multiple losses for all concerned and not all of them are immediately apparent. The loss of an individual’s health and physicality, loss of a previous life, loss of a well-defined role within the family unit – homemaker, peacekeeper – the loss of how we relate to one another. What consequences will these losses have?
The sense of loss will feel very real and can be akin to the grieving process associated with other losses and bereavement. Feelings of denial, anger and sadness are common as these losses are processed. Adjusting to the change in circumstances and an altered reality from the one previously imagined takes time.
Acknowledge and talk through ideas of loss with others. Consider both experienced loss and a sense of anticipatory loss. In this altered reality what have you gained? What is different in a positive way?
Sense of self and identity
Can I remember who I was before diagnosis? Is a patient all that I am? What role do I now have? Am I in control of my body? How am I now seen by others? What sense of identity can I hold onto?
A diagnosis will prompt many of the above questions and it can be hard to know, process and accept the answers. Transitions will be ever changing, fluid and not necessarily linear. Previous relational patterns – how you have related to yourself and others – can impact how you adjust to a different sense of self. An individual who has always been a people-pleaser may find it difficult to accept help from others or not be in a position to accommodate others in the way that they have done previously. A diagnosis can also bring about a renewed sense of living; of wanting to experience all that life has to offer and a desire to push yourself in order to see what you are capable of both psychologically and physically. A move towards finding joy in the most simplest things – sound of rain against a window, birdsong, freshly brewed coffee - an acute appreciation of the world can also be common.
Anxieties can arise at the diagnosis itself and continue throughout treatment and recovery. Anxieties about appointments and tests – known amongst patients as “scanxiety” - can be very real. Sometimes the physical symptoms of anxiety can be mistaken for cancer related symptoms. This can lead to a heightened hypervigilance around physical symptoms – is this related to my cancer? Am I more ill than I thought? Anxiety about what will happen in the future is also common – what does the future hold? How will I manage financially?
Anxiety can be apparent because life feels out of control. Normal routines are disrupted and a sense of helplessness and uncertainty can be ever present. Think about what can you control and find out as much information as you can about next appointments, treatment plans etc. Focus on what you are able to do and what is being achieved.
Many have reported that the psychological impact of a cancer diagnosis continues long after any physical symptoms have been addressed. The sense of loss, transitions and numerous anxieties can be continued and lifelong experiences. Having some way of acknowledging and exploring these at the point of diagnosis can help normalise therefore reducing isolation and raising awareness for those experiencing such a diagnosis. In knowing that others can experience the same and that those around them may understand some of the processes mentioned above that knowledge can prompt connection and sharing. Combine this with activities and exercises that attend to the body as well as eating and sleeping well and a more holistic approach post diagnosis can be embraced.
And my Dad’s answer? He wasn’t scared for himself, he was scared for those of us that he was leaving behind. Let’s dispel our own fears and dilute the power of a cancer diagnosis by talking about it and what it means psychologically for all concerned.
Bowel Cancer UK is holding two patient events with the theme 'living well with bowel cancer' – one in Manchester on Saturday 8 June and another in Edinburgh on Saturday 15 June. These free days are open to anyone affected by bowel cancer, including patients, family and friends. Find out more here.