After the treatment finishes then what? (Dr Peter Harvey)
07 Getting back to normal
It is important at this early stage to address the common hope on the part of patients and those close to them to ‘Get back to normal’.
If taken too literally, this can be more of a hindrance than a help and may become a burden which gets in the way of progress.
The reason for suggesting this is based on the observation that once heard, the diagnosis of cancer is unlikely to be forgotten. Whatever the prognosis, whatever your hopes, whatever your personality, the moment that you hear that you have cancer your life changes.
For many people their hope for the future is compromised, their trust in their world denied. Alan Bennett calls it ‘...the collapse of any imaginable future...’ (Bennett, A. (2005). Untold Stories - Ups and Downs p 599).
For many people the diagnosis produces a seismic shift in their feeling of stability - of faith in a stable and just world. We all make assumptions about our future and about our place in the world.
Whilst we all know at some level that our time is limited, the stark realisation of the possibility of our life’s foreshortened span in the form of a diagnosis of cancer brings us up short with a terrible and awesome shock.
To imagine that we can somehow forget the impact of that news or return to a state when that realisation did not have a tangible form is beyond most of us. We cannot return to that state of safety and stability - going back is not an option.
Dealing with the threat of the sense of a future denied is covered elsewhere on this site ( see Living with uncertainty ), but for now it may be important to acknowledge that to 'get back to normal' with the implication that nothing has really changed may be an unlikely hope.
Apart from the sense of vulnerability noted above, the whole process from diagnosis, through treatment to completion is entirely and utterly abnormal. For months your life is taken over by what must seem like an endless stream of clinic visits, of being prodded and poked, scanned and punctured, of waiting and watching, of hopes realised and hopes dashed.
Your life has been taken over by others, run to someone else's timetable. There is every reason for wanting to get back to something that is yours to control, yours to manage, back to something familiar. However, to try to do that when so much has changed is a difficult, if not impossible task. The trick is how to regain control and stability in a changed world. And the world has changed not just for you but for those around you.
There is another phrase that is sometimes bandied about in a way that is not always helpful along the lines of ‘You need to put this all behind you and move on.’
The suggestion here is that you can somehow pack all your fears and experiences neatly away in a little box, never to visit them again and to act as if nothing has happened. If only life were that simple!
No-one can simply forget things that have happened to them, particularly not the shock of diagnosis and the demands of treatment. Furthermore there are often very powerful reminders of what you have experienced in the form of changes to your body or clinic visits for check-ups or anniversaries of significant events such as the date you were diagnosed, had your surgery or finisshed chemo.
Forgetting about such a powerful set of experiences is not an option.
Time and effort will help the memories change - some of the worst experiences may fade and lose some of their intensity, some of the best may become embedded in your personal history, some will simply become so distant that they become unclear and inaccessible. They become incorporated into your life story, changed perhaps, but not forgotten.
'Moving on’, a fashionable phrase applied to all sorts and manner of troublesome experiences, is often used to shut down and to close off thinking (and feeling) about painful events prematurely.
It more like saying ’Let’s move away from this painful topic because I don’t want to talk about it’. Of course it is possible to move on from painful memories, but only after they have been dealt with and confronted in a meaningful way. Leaving them behind untouched is often not the best way of dealing with them.
When people around you use this phrase it’s often to save their pain rather than an attempt to help you - they can’t bear to listen to your hurt because it causes them pain in response, so they react by attempting to shut off conversation completely.
This is a difficult issue to deal with sensitively and calmly. One way is to be absolutely frank and open about it and deal with it directly: one phrase that might be useful goes along something like....’I know this is painful for you to hear but I need to let you know how I feel. I am not expecting you to make things better and I am not telling you this to gain sympathy or to hurt you but I really need to say how I feel and let go of some of my distress.’
Yet another phrase of dubious help is ‘Coming to terms with cancer’. It’s worth spending a little time on this because the phrase is used in all settings when people are having to deal with the most appalling and overwhelming trauma. In the section on coping ( see What do we mean by coping? ) it is suggested that you ask yourself ‘How would I be if I was coping?’.
In a similar fashion, if you feel that you are not coming to terms with cancer, ask yourself the question ‘ How would I be if I had come to terms with cancer?’.
Most people find his an impossible question to answer and it often leads into quite unrealistic expectations - almost acting as if cancer had never happened and that it was just another of life’s little problems.
Time and effort can alter how you feel about cancer, can allow you to put it in its place in your own life history as we have noted when talking about ‘Putting it behind you’. Coming to terms with anything is not about forgetting, it’s more about incorporating the experience, smoothing off the rough emotional edges and trying to incorporate it in your own life experience.
A similar phrase is the you must ‘..learn to accept the cancer..’ This often comes with the implicit suggestion that you should also feel OK about the cancer.
This is another example of asking or expecting too much. It is one thing to acknowledge the fact of the cancer, quite another to expect to welcome it which is what is often associated with the idea of acceptance.
Yet another word used in this context (often by health-care professionals) is adjustment and some psychiatrists may use the phrase adjustment disorder (sometimes this is used as a psychiatric diagnosis) to describe serious emotional distress.
The problem with this terminology is that it implies that there is a ‘correct’ adjustment - a sort of standard against which you can be judged. James Brennan (a clinical psychologist who has worked extensively with people with cancer) discusses the whole of the issue of what we might mean by the term adjustment (see Brennan, J. (2004). Cancer in context. Oxford: Oxford University Press). and, drawing on both his clinical experience and psychological theory, describes a model of what he calls a Social-Cognitive Transition model of adjustment which he notes ‘...is a model of normal adaptation in which the individual and their social world struggle to make sense of changes imposed by the disease and its treatment...’. [Brennan, J. (2001). Psycho-Oncology, 10, 1-18.]
Of all the words that won’t do, is there one that will? Perhaps the word ordinary fits the bill. After all, your life from diagnosis to now has been quite extraordinary. You have been catapulted into a strange and overwhelming world of hospitals and clinics; of new, unfamiliar and frightening words; met hundreds of new people; had to confront issues that you have not faced quite so starkly and brutally before - and if that’s not extraordinary, then it’s difficult to imagine what is.
So rather than trying to ‘get back to normal’ your aim might be to ‘regain a sense of the ordinary’.
The Cancer Counselling Trust has now closed.
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