A guide for
those who
give so much

The work of a caregiver may or may not be paid, but it requires caregivers to sacrifice some part of their lives selflessly to the needs of another, whether family member, relative, or a complete stranger. However, there is also another important aspect to caring and that is for caregivers themselves to be healthy and to feel supported in the work they do too. It is important to know that you, the caregiver, are not alone. Some professional help may be available, and this booklet aims to help in identifying what is out there. There will also be others who share or have shared your situation, who can be contacted through cancer charities’ websites or publications, helplines or forums, local caregiver groups or charities such as our own.

The needs of those who are being cared for may be anything between slight or occasional to constant and exhausting. Their need for care may be merely temporary or last the lifetime that is left to them. The scope of caring that may be called for can be as varied as all the illnesses found in a medical dictionary. However, the OPA Caregivers booklet is addressed principally to those caring for people who have problems arising from pre–cancerous conditions or diagnosed cancers of the oesophagus or stomach, and from the treatments that are needed or have been given. Oesophageal/gastric cancers are some of the most difficult cancers to treat, not only because a lengthy and complicated surgical operation is often the only remedy, but also because the cancer compromises the body’s access to nutrition and hence its long–term health and survival. This guide offers caregivers information on what a cancer patient with this condition will be going through, advice on how you can prepare to care for them and what will be involved.

The first inkling that something may be wrong could have been one or more new, unexplained or worrying sensations or symptoms, such as more frequent indigestion, pain and discomfort in the chest and/or stomach area, increasing difficulty in swallowing, frequent hiccups or choking, episodes of vomiting, loss of appetite and consequent weight loss. A visit to the GP should ideally result in an urgent hospital referral to see a consultant and an investigation via endoscopy.

If the tests confirm the possibility of oesophageal/gastric cancer and the patient whom you are caring for is a partner or a friend, you might expect their (and your) reaction to be one of shock. They might have questions about the cause, fear of the risk of cancer spreading, and anxiety over any delays in getting diagnosis and treatment. Inevitably, there will be worries about the future and about the effect on their family and their ability to continue working and, perhaps, on the financial consequences of a prolonged illness.

This is the time for you, as partner and/or caregiver, to take the initiative in preparing questions for meetings with doctors and consultants, taking note of their answers and pursuing appointments and procedures. It is good practice to accompany the patient to these whenever possible, especially where courses of radiation and/or chemotherapy are prescribed before and possibly also after the surgery. It is also advisable to keep records of explanations given (in layman’s terms wherever possible), of tests taken and undertakings given, and follow up those results and actions. Furthermore, it would be a help at this early stage to try to gather information on resources available (advice, specialist help, financial support) from the GP and the hospital, as well as our own website and its booklets, especially ‘Guide to Life after Oesophageal/Gastric Surgery’, as this also explains what preparations may be undertaken prior to the operation. More recently, consultants have been stressing the important contribution that optimal physical and nutritional status prior to surgery can make to post–operative recovery. You can do your part to help with this.

Undergoing tests, or even a preparatory course of chemotherapy before the operation, may be a cause of anxiety, distress or discomfort such that you, as a prospective caregiver, might take up a more assertive role in family affairs and inform friends and relatives (or not), according to the patient’s wishes. It would be advisable at this early stage to plan what arrangements or adjustments will be needed for their and your own work commitments (job, family, finance) and for other dependents: children, elderly relatives, pets, etc. They may like to delegate or share some personal matters which they normally look after themselves and/or consider assigning one or more forms of Power of Attorney to you.

To prepare for the discharge from the hospital after the operation, you should be given a discharge assessment. This should involve a review of facilities in the home by the hospital and/or the local authority’s social services to ensure that there is the necessary equipment and space for the patient’s safe return as they may well be in severe pain, be weak, nauseated, depressed and dependent, requiring help in moving around, eating, washing and toileting, and sleeping. You will want to see that any extra seating, mobilising, bathing, toileting or sleeping aids needed are in place before they return. By then, you may have been able to gather information from the consultant, the Upper GI [gastro–intestinal] specialist nurse, the dietician, and the physiotherapist in the hospital, on likely recovery patterns, possible complications and dangers, who to contact in emergencies or when concerned, and how. Their discharge assessment should set out the dates for in–hospital follow–up appointments with all of the above specialists and advice on whether or when GP or District Nurse visits may take place. Their GP will have been informed of their discharge date. You are also entitled to a Carer’s Assessment from your local authority’s social services department, access to contacts, extra equipment you may need to deliver the care safely, financial assistance if you qualify, and eventually, possibly some respite care.

It would probably be helpful to introduce a gradual recovery regime for basic daily living activities, step by step according to their abilities and motivation. The principal effects of the operation for oesophageal or gastric cancer are likely to be changes in taste and smell sensations, loss of appetite and consequent weight loss (which are common reactions after any chemotherapy they may have had and which can also cause skin sensitivity). In any case, their fluids and food intake may be restricted, as the effects of the surgery may take weeks or even months to heal. Initially, the hospital will advise you about this. Naso–gastric tube feeding may be needed for some weeks and after that, very gradually, small amounts of solid food may be reintroduced. In view of the effect of surgery on the size of the remaining stomach area and the removal of an effective upper sphincter in the oesophagus, developing a habit of ‘grazing’ is usually recommended. This may mean anything up to six or seven small portions of food a day, as tolerated, rather than the customary three sit–down meals a day.

The OPA’s booklet ‘Swallowing – Nutrition when it’s Difficult’ gives advice on foods and some recipes for a variety of suitable dishes that may help with building up strength after the weight loss that usually occurs after this surgery. Because of the changes in diet, it is important to ensure that the patient continues to have regular blood tests after discharge, initially 1–2 months after surgery and later approximately every 6–12 months; as a general rule, dieticians have recommend FBC; Vitamin B12; Iron (Iron and iron bindings); Folate; Vitamin D; Zinc; and PEI (Pancreatic enzyme insufficiency) but as everyone’s outcome and progress will be different, it will be up to the doctors to decide eventually which blood tests are needed. These tests should then be reviewed by a dietician, Upper GI nurse or consultant.

Longer lasting effects of an oesophagectomy may include occasional or persistent ‘Dumping syndrome’ (see our leaflet ‘Dumping Syndrome and common problems after surgery‘). Symptoms occur after eating – a feeling of sweating, dizziness or nausea due to temporary insulin overproduction – vomiting, when too much food has been taken at once, malabsorption and diarrhoea (especially if the Vagus Nerve has been damaged during surgery), and general fatigue and depression. Sleeping patterns may be disturbed, especially as the patient will be adapted to sleep at a higher angle, with extra pillows and/or a wedge, in order to minimise acid or bile reflux. Regaining strength and returning to life as it was before the operation may take 12 to 18 months, and it will also be influenced by the ability to manage their pain and improve their mobility.