{"id":17398,"date":"2021-02-17T11:16:54","date_gmt":"2021-02-17T11:16:54","guid":{"rendered":"http:\/\/opa.org.uk\/sample-page\/opa-notes-for-a-carer-2\/"},"modified":"2021-04-04T14:09:10","modified_gmt":"2021-04-04T13:09:10","slug":"opa-notes-for-a-carer","status":"publish","type":"page","link":"https:\/\/opa-old.voidappsdev.uk\/?page_id=17398","title":{"rendered":"OPA Notes for a Carer \u00a9"},"content":{"rendered":"

Notes for a Carer<\/h2>\n

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Introduction<\/h4>\n

The Oesophageal Patients Association is a charity dedicated to supporting patients, families and their carers – when preparing for, undergoing, and surviving after surgery for oesophageal cancer<\/a>.<\/p>\n

Our meetings and publications (including a bi-yearly newsletter, and downloads from our website) provide a forum and an information site which we hope may help patients, and their carers, live better after receiving treatment to deal with cancer of the oesophagus<\/a>. The Association itself has produced five booklets which can be read and\/or downloaded from our website, or a hard copy can be sent out to you when you place an order from the OPA Shop<\/a>.<\/p>\n

We also operate a Helpline for Patients,Carers & their families on 0121 704 9860 (9 am \u2013 3 pm, Mon – Fri), to help direct you to the most relevant sources of specialist advice.<\/p>\n

Publications<\/h4>\n

1. A Guide to Life After Oesophageal\/Gastric Surgery. <\/span><\/strong><\/p>\n

We hope this bookletmay be helpful for carers as well as for patients who are preparing to undergo, or who have undergone, this major surgical operation. It gives a general overview of the nature of the surgery itself, of post-operative recovery, and then of the possible or likely changes to a patient\u2019s general lifestyle – especially to the inevitable changes to eating and drinking \u2013 and also to some of the associated problems that may arise. To view a PDF version of this booklet, click here<\/a>.<\/p>\n

2. Swallowing & Nutrition<\/a> – when it\u2019s difficult.<\/strong><\/span><\/p>\n

This booklet goes into greater detail concerning some of the complications around eating and general nutrition that may arise after the operation. It covers issues around the effects of having radiation or chemotherapy<\/a>, of possibly later having to have a stent fitted, and the complications that may arise with certain foods in these circumstances. It also gives quite detailed advice about balancing the diet of a post-operative patient in the longer term, paying attention to energy, protein, and vitamin and mineral requirements, with sections on simple foods that are especially nutritious, and on food supplements that can be beneficial. Finally it gives advice on some of the problems that can occasionally arise, such as\u00a0 indigestion, nausea<\/a>, diarrhoea, or loss of appetite. To view a PDF version of this booklet, click\u00a0here<\/a>.<\/p>\n

3. Recipes for When Food is a Problem.<\/strong><\/span><\/p>\n

This is a recipe book with various food ideas for people who need to put on weight, have difficulty in swallowing, or who are living with the after-effects of surgery on the stomach and\/or oesophagus (gullet). To view a PDF version of this booklet, click\u00a0here<\/a>.<\/p>\n

4. Oesophagogastric Cancer – The Patient\u2019s Pathway. <\/span><\/strong><\/p>\n

This booklet is a pathway guide for patients following diagnosis. It is based on the St Thomas\u2019 Hospital (London) pathway but as the treatment is standardised across the UK, it should reflect that in the centre where you are treated. To view a PDF version of this booklet, click\u00a0here<\/a>.<\/p>\n

Being a Carer<\/h4>\n

Being a carer is a commitment, one might also say a job, without a fixed definition \u2013 and often, unfortunately, without extra financial support. Not unlike some aspects of the role of doctor or nurse, here it means focussing on the recovery, survival and well-being of your partner or friend. He or she may need your support and help after such a life event that a diagnosis of serious or life-threatening ill-health has brought about.<\/p>\n

In the role of carer, it is important not to underestimate anxieties or worries which your partner or friend may have on occasions where fresh complications, or a new pain, arises; worries that the cancer could, or has, returned. After treatment for cancer, every such occurrence can trigger these worries, and therefore if such a new pain or complication arises, it is advisable to make an appointment with the doctor or specialist nurse to have it looked into as soon as possible. (Avoid \u2013 as I am sure you will have learnt \u2013 well-meaning reassurances that \u2018don\u2019t worry just now\u2019, or \u2018it will get better soon\u2019, etc.)<\/p>\n

As your partner or friend doubtless, and possibly you yourself, will also have learnt from the doctors and nurses after the operation and treatment, there are many possible side-effects and consequences of treatment for oesophageal cancer, and\u00a0several of these are explained in our booklet described, \u2018A Guide to Life After \u2026\u2019. It is always recommended that you try to be present at any subsequent follow-up consultations of your partner or friend with his or her consultant<\/a> or specialist nurse. You may have helped him or her prepare for the consultation, making notes for\u00a0 what he or she, or you yourself, wish to report or discuss. If he or she is anxious or distressed, you can give extra support, and possibly take notes on the comments and advice that the consultant or specialist nurse gives.<\/p>\n

If the patient needs to see his or her GP in an emergency, please remember that \u2013 with the responsibilities that GPs carry to cover the conditions of every one of their surgery\u2019s patients \u2013 the GP may not be fully familiar with the very particular nature of complications arising from oesophageal cancer. A visit to that GP may therefore be only the initial step for a further referral to the local consultant or specialist nurse.<\/p>\n

After the operation, it is possible that some swallowing difficulties may develop again, and its is important to report these as soon as possible. All that may be needed is a \u2018stretch\u2019 under endoscopy<\/a> (see \u2018Time for a stretch?\u2019 in our January 2014 newsletter, but any such difficulties should be reported and reviewed in all instances. Other more common consequences of the treatment are \u2018Dumping syndrome<\/a>\u2019, \u2018Steatorrhea (malabsorption)\u2019 and \u2018SIBO (small intestinal bacterial overgrowth)\u2019. These are explained in greater detail in our factsheets \u2013 especially in \u2018Nutrition and digestive issues\u2019, and in some of our newsletters.<\/p>\n

Our Association has many OPA-affiliated groups round the country, as well as contacts with other groups set up on independent initiatives. We can provide patients and carers with information on how to contact these, as making and maintaining contact with one in your locality offers a valuable and often much appreciated opportunity to meet, and to exchange information and experiences, with others in similar circumstances.<\/p>\n

Resources<\/h4>\n

The Association\u2019s factsheets and past newsletters, which are available on our website, may contain items of interest, for example:<\/p>\n

Newsletters<\/strong><\/p>\n