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Life after surgery.

A presentation by Jo Harvey, Gastroenterology Clinical Nurse Specialist at Sand well General Hospital.

When first diagnosed with Upper Gastrointestinal cancer your life is in turmoil. Things progress so quickly that you hardly have time to think of what is happening to you. You have your endoscopy, primary diagnosis is made, you have a major problem with your gastrointestinal tract and in many cases surgery to remove part of your oesophagus (gullet) or your stomach is the proposed treatment. From this time tests and treatment can happen that quickly that you hardly have time to think of the future consequences. You may have to undergo sessions of chemotherapy to reduce the size of the tumour, and then you face the process of surgery to remove the tumour. You have been told that this is major surgery; even more complicated that heart surgery. All through your treatment from diagnosis to the completion of your surgery you are in the hands of dedicated medical and surgical staff who control your wellbeing.
Once your surgery is over and you go back to your home environment then your worries begin. In the seven years that I have been involved in the pre and post care of upper gastrointestinal cancer patients I have dealt with hundreds of patients who have all had the same concerns, and each one of them has thought that they were the first to display these problems. They have questioned both the physical and physiological issues raised after surgery so let me deal with them now.

PHYSICAL ISSUES

The Operation. Eating Swallowing Appetite.
The first question I am asked is "has my operation been successful". In nearly all cases I am able to reassure patients that the tumour has been removed and that further treatment will help you to regain a normal lifestyle. What I cannot guarantee is that the cancer will not reoccur. I am asked about eating, and patients regularly say that they still have problems with food. I have to tell them that there is no medical reason that they could not eat normally. They sometimes seem shocked when I tell them to eat the problem foods, bread, steaks fish etc. Patients often complain of food and drink having tastes that they find off putting, even a cup of tea does not taste right. I have to tell them to keep trying these items and tastes will return. Very occasionally I have a patient that insists that they can only manage one particular food, or will not follow the advice that I give, but in the years that I have been running this clinic I have only once had to readmit a patient to the wards to get them to eat a reasonable diet.
The patient regularly complains of still not being able to swallow, sometimes this is caused by a stricture where the surgical joint is made and endoscopic dilatation may be necessary but in most cases the problem with swallowing is fear of what will happen. I can only tell you "try it and see" and in most cases this fear is overcome and the patient can manage a normal diet. The other regular problem is appetite, "I don't feel like eating, foods and drink don't taste right and if I do eat I regularly get problems that put me off food". The "I don't feel like eating" possible comes from the "food and drinks don't taste right". Why the tastes are off putting no one knows, but tastes for various foods will return and the flavors of foods not previously tried will become popular. The symptoms of the problems that put patients off foods are most commonly dumping syndrome, gastric retention, acid reflux and diarrhea.
Dumping syndrome is when the intake of food is too great and the patient feels lethargic and begins to sweat and shiver. Even as much as a teaspoon too much food at one time can cause this problem so control of when and how much you eat is important. Gastric retention is when food seems to lie in the gullet and stomach and you have the problem of "my food just sits there and I am bloated all the time". One of the treatments for this is some medication given short term to give the gut a kick start. If you have a problems with food sticking while eating, stand up and walk about for a short while and let gravity do its job. Acid reflux is a major problem with many patients; this is caused by the reciting of the stomach after surgery and bringing gastric acids higher into the chest. Again gravity can help with this problem and pillow supports will help to prevent the problem while sleeping. Diarrhea is another common problem but this is often cured or prevented by getting your own diet right, this is really a matter of trial and error although medication will help in many cases. The next most common question is "when will I gain weight?" The answer is, when you start to consume more calories than you use, but the main thing is that we do not particularly expect you to gain, but to maintain weight. This you do by eating regularly and sensibly.

THE PHYSIOLOGICAL ISSUES Early days home. Meal Times. Healthy Eating. Fitness. Family & Friends. Work. Early days home.

After you have undergone the trauma of diagnosis, treatment and surgery the early days that you have at home are the first that you really have time to come to terms with what has happened to you. You feel alone and you start to worry about the little things that are happening to you, that is why we try to get you into a post op clinic as soon as we can, to calm your nerves of what is happening and to get you to use the services of a support group like Upper G.I. Blues, people who have undergone similar situations to your own. We know that these are traumatic times for yourself and your family and carers, and the times when family arguments begin. He/she (the patient) won't listen to anything you say, He/she snaps and argues all of the time. He/she (the carer) wants to control everything I do; they won't let me do anything for myself. These are common statements made at my post op clinics. We each have to realize that this status is caused by love and affection, not by trying to control or by being awkward.
Meal Times.
Meal times will change for the patient, and the way they control their eating will be different. Three meals a day are no longer an option for Upper G.I. surgical patients, little and often is the rule of the day, with high calorie foods an essential part of the diet. Smaller meals with regular snacks are the best.
Healthy eating.
As with all diets a variety of the food groups is essential for a healthy diet. Eat regular portions of fruit and vegetables, have a good range of starches, potatoes and pasta etc. Make sure that you have a good range of proteins, meat, nuts and fish including oily fish such as mackerel or sardines and such. However ensuring High Calories are the priority.
Fitness.
Fitness will come in time, although you may find that you tire much more quickly than you used to. This is most often linked to your eating program, don't forget that your stomach is the fuel tank for your body and after surgery you fuel tank has been reduced in size and needs filling more often. It may be that you may not be able to regain what you think of as full fitness but I have had football referees back into action and in charge of games within twelve months. The way you regain fitness is different for everyone, but you will get there.
Family & Friends.
From the time of your diagnosis the attitude of your family and friends will sometimes change. Some will become more supportive, sometimes overbearingly so. Others will reject you entirely, not knowing how to speak to you for fear of saying the wrong thing. Just remember that they are tiring their best to help. Work. When will I be able to get back to work is another regular question that is difficult to answer as this relies on your own particular circumstances. If you are involved in an occupation that requires little physical effort you should be able to return after 3 months, if your job requires a lot of physical labour you will probably have to wait at least 6-12 months, but do what you can when you can and don't overdo things.
THE VICIOUS CIRCLE.
The things that cause most of the problems with post op patients are that they get in a vicious circle. You can't sleep right because you have rested for most of the day, because you are tired all of the time because you have not eaten correctly, so you have not had the energy to do any exercise, so you get depressed and the arguments begin and you get more depressed and you start to worry about every little ache and pain and wonder "has the cancer come back" and this prevents you from sleeping. The answer to your problems is to listen to the advice given in clinic and become an active member of your local Upper G.I. Blues support group who will help you along the way.