Those who have been diagnosed with oesophageal cancer have a number of common problems, some of which are relevant to other illnesses. 

·        Adapting to your diagnosis – sometimes the whole process of becoming used to the idea of having cancer can take people more than a couple of years before they really come to terms with, and become used to, the new situation.

·        Coping with uncertainty and the future

·        Living with symptoms such as unreliable digestion

·        Improving quality of life is a worthwhile thing to do, and can help your prognosis.

 Getting together with other patients can help those who have had serious operations such as oesophagectomy or gastrectomy.   It can help to talk to others who have had an unusual operation as they can immediately relate to common experiences.  Family members and friends can be a great support, but patient support groups can be the source of advice and information, and a forum for exchanging information about medical conditions.   But many patients will have been to different hospitals and had varying treatments from different surgeons and other doctors for perfectly logical reasons.    

We are all different.   We react to things in an individual way, and in some respects we ourselves are the best expert about our own bodies.

There can be positive feelings arising after a diagnosis of cancer, such as:

·        Rediscovering love for family & friends

·        A chance to review your life and putting things into perspective

·        A’new start’

·        Motivation to change old lifestyle/ habits 

But inevitably there are also negative feelings which may affect us all, such as: 

·        Fear (eg of pain, embarrassment, lack of dignity, recurrence)

·        anger - ‘why me?’

·        worries/anxiety (what will we do about money, jobs?)

·        low mood/depression

·        frustrations

·        loss of confidence

Common feelings experienced by patients are: 

·        Having both ‘good’ & ‘bad’ days/ weeks at a time

·        Worrying about symptoms & the future

·        Not wanting to be ‘sick’, or letting the diagnosis define you as a person  – ‘Who am I now?. Where am I going?’

·        Worrying about your family & others (eg patients feeling the need to support those you care about, and how they will cope.)   Patients and carers can both tend to ‘shield’ each other from their worries – but in the end it is usually best to deal with things asa team and give each other mutual strength.

Coping with everyday life and symptoms can involve:

Range of symptoms and side-effects of surgery that can persist:

·        Fatigue

·        Pain

·        Dysphagia (swallowing problems)

·        Regurgitation/reflux

·        Weight loss

 How our thoughts affect us, and how we cope with worries and symptoms can be improved with self-help strategies:

 ·        Look at your weekly activities: develop a structure or routine that is realistic - planning reduces worries

·        If we take two steps forward and one backwards, we are still further forward overall!

·        Change the focus of your thoughts – and increase self-control: eg ‘what I can do’

·        Talk with supportive friends and family about any worries, and ask for support, especially if we feel at times that we ‘can’t see the wood for the trees’.

 Common traps we can fall into: 

·        Comparing ourselves to others

·        Setting up very high expectations of ourselves – can be led by perfectionism.   Do not ever think of the word ‘should’ – as in ‘I should be able to do this by now’.

·        Not being kind to ourselves or compassionate during difficulties

·        What would you say to a friend/family member? – heed this advice!

What can help? 

Ask for professional help

·        Via medical team @ your hospital – gain more information

·        Via Health Psychology @ local hospital

·        Via GP: request psychology referral

There are also counsellors who can be seen, usually privately,

Final thoughts…

 ·        Try not to pressure yourself to cope with everything – eg I “should be”!

·        Try not to generalise yourself with the experience of others

·        Take control with positive, pro-active and planned coping strategies

 Some useful contacts: 

• The Oxford Cognitive Therapy Centre, Warneford Hospital,Oxford, England
  OX3 7JX  Telephone 01865 223986  www.octc.co.uk   for self-help books and relaxation CDs   
• The British Association for Behavioural and Cognitive Psychotherapies have a website to help people gain access to private registered therapists.   www.babcp.co.uk

The Belfast Study

Questionnaires were sent to OPA members.  594 former patients and 439 carers responded by returning them, on average 4 years after surgery.   35% of former patients and 49% of their carers were experiencing high levels of anxiety. notwithstanding that it is normal for those affected by chronic illness to suffer in this way.   People's anxiety tended to be raised when they had recently experienced symptoms associated with oesophageal cancer, and if they had other medical conditions.   Younger people and those without a carer tended to be more anxious.   The way people regarded their condition was important.   Sometimes those who believed their illness to be caused by factors such as stress and overwork  were more likely to report a higher level of anxiety than those who were looking to a more positive future.   Encouraging some people to look at their situation differently, and helping them to find different ways of coping, could improve their mental health, especially if they could find ways of feeling more in control of their situation.   Maintaining a positive focus tended to be better than either spending undue time reflecting about the effects of oesophageal cancer, or trying not to think about the disease at all, both of which tended to be associated with higher anxiety levels.   There will probably be a further follow-up study.