Lifestyle and Wellbeing
A healthy diet, body and mind go a long way towards a happy life. So of course, adopting a holistic approach is the most crucial recipe of all. It is all about lifestyle.
Combining a healthy diet and a happy home, full of fun and friends, exercise and stress-free living would be perfection, but of course our lives are rarely like that. Cancer affects so many of us these days; it is thought that one in every two people will have cancer at some point in their life. Rates of cancer seem to be on the increase and many believe modern lifestyles have so much to answer for. In the hustle and bustle of busy living, it is so easy to let our habits drift and slide into convenient ruts, when before we know it, a serious health issue is upon us.
Several wellbeing considerations arise throughout the cancer journey from the initial stages through to getting back to normal. In this section we try and provide some guidance on these in terms of:
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Anxieties that can arise at various stages
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General mindfulness tips
Anxieties
Scanxiety
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Since the process of getting the raw data from an individual scan (or other diagnostic procedure) into a useful form takes time and usually goes through a review process involving multi-disciplinary team meetings, there is ordinarily a 2 to 4-week lag from having each individual scan/diagnostic procedure to getting the results from your Consultant in clinic.
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This may lag may however vary, depending on urgencies and the need for various parties to review the scan.
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Because of the uncertainty, feelings of anxiety in this period are very common and often referred to as ‘scanxiety’ :-). Scanxiety is normal and is to be expected, but rest assured that urgent cases will be progressed as quickly as possible.
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Over time, you may find ways of dealing with scanxiety. Sometimes we end up planning our lives around a 3- or 6-month cycle of scans/Consultant appointments and it can be very distracting
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Will the disease return?
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Concerns about the disease returning are natural and it’s something you will want to discuss with your clinicians. In around 3 out of 4 cases the cancer doesn’t return, and this figure is improving as pre and postoperative chemotherapy and other treatments become more sophisticated.
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Also, bear in mind that after your initial treatment, you will be scanned regularly and any new or returning disease is likely to be found early.
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It’s possible that with your re-engineered GI tract you will experience symptoms like those that led to your original diagnosis. You should discuss this with the clinicians, who may recommend stretching the pylorus. Sometimes it is necessary to repeat this from time to time to get a good pathway for food.
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Eating and drinking socially
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As life starts to return to normal you will be in situations where you are eating and drinking with people who don’t necessarily know about your condition. This often causes a lot of anxiety at first, but as you find ways to deal with it becomes much easier. The important thing is to be in control and not feel pressured to eat things you don’t want to.
Many of us have been brought up to feel uncomfortable about leaving food uneaten, but you will encounter situations where you simply have to do this. You may choose to say something very direct such as “I had my stomach removed so I can’t eat a lot at once…” or you might be a bit more indirect about it. We are all different and you will find a formula that works for you.
If you eat with friends, it may be worth arranging to eat at your house at first; although you (or your long-suffering partner) has to do the work you can be completely in control of what you eat or drink.
OOSO has an explanatory card available that you can show to restaurants if you don’t feel comfortable (or are fed up with) explaining yourself.
A few other random tips….
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Look at menus in advance – Google is your friend.
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Call the restaurant in advance.
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Always carry some Imodium and Gaviscon wherever you go. Sometimes you will get it wrong.
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Read all the dietary advice on the OOSO site, all the advice the UGI clinicians give you.
Sometimes the pleasure you will get from social eating and drinking is worth any subsequent discomfort :-)
Dealing with pain
About two-thirds of UGI cancer patients don’t suffer from any long-term pain or discomfort. Post operative pain management is usually very effective, but some of the procedures can cause long term issues. You may have had a couple of ribs cut through, and you will probably have a lot of scar tissue in the muscles on one side, which can lead to back pain. Similarly, sleep postures that reduce the risk of reflux can often lead to back and neck pain.
Often these are just niggles that go away with a dose of paracetamol and don’t come back for a while. If you are at all concerned though you should contact the UGI clinical team.
Some chemotherapy and radiotherapy protocols can result in joint pain, which should stop pretty quickly after the treatment finishes. Peripheral neuropathy is also a side effect of some chemo drugs and can cause a degree of discomfort for some months after treatment, but usually clears up eventually. Again, talk to your Oncologists or the Specialist Chemotherapy Nurses.
Some of us have found that yoga is very helpful; you learn some good stretching and relaxation techniques.
It’s also true that many of us are at a point in our lives when we are starting to experience age-related conditions such as arthritis. Sometimes you find yourself asking the question “is this a result of the cancer treatment or am I just getting old?”
Dealing with side effects
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Some of the post surgery side effects are discussed elsewhere… over time you’ll become more confident about coping with them and indeed avoiding them altogether. You will probably feel some anxiety about dumping but this will decrease as your confidence and experience increase and you learn to recognise the early symptoms and triggers; some of us always keep some dextrose tablets with them (and Imodium Instants do exactly what their name implies).
Side effects of chemotherapy and/or radiotherapy are a bit less predictable. You will see a long list of potential side effects on the patient information leaflet and the consent form, but normally you’ll only be significantly affected by a small number of these: it's not easy to predict which.
Everyone has a different response to hair loss; some of us start from a point where there’s none to lose :-) others don’t care. Some of us will go out and buy a hat or a wig. For some of us its a big deal though and far too easy to trivialise. Talk to your Oncologist; many treatments have options that can reduce hair loss. Hair usually grows back quickly.
Nausea can be difficult to deal with and can be a serious issue if it prevents you from eating properly. The anti-nausea medications you are given are usually pretty effective but if they don’t work well for you or cause other issues then you should discuss this with the staff in the chemo suite. There are plenty of alternative medications. Usually you can expect any nausea to stop within a few days of treatment stopping.
Tiredness and lack of energy can be a big issue and is cumulative, getting progressively worse during treatment. With radiotherapy, fatigue peaks about 6 weeks after the last dose. But it will pass with time. During treatment about the only thing you can really do is “do less”. Afterwards you may have to push yourself a bit, but you will get back to normal.
'Chemo fog' may also be an issue; it’s related to tiredness and lack of energy, but you will find that you lose some attention to detail and maybe become a bit forgetful. This may be a big issue if you are trying to work, and you may have to get a bit more organised – Microsoft and Google provide some useful tools that mean you don’t have to rely on remembering stuff :-)
Returning to Normality
Stopping/changing work
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For several months you will need to plan for not being able to work or being limited in what you can do.
Everyone’s circumstances are different. Employers have a range of statutory obligations and many will go beyond those. It’s obviously important to talk with your employers as early as possible; hopefully they will be sympathetic and helpful. You may be able to make some arrangement to return part-time and/or from home and gradually increase the number of hours worked.
If you are self-employed then you may need to discuss your availability with clients and think a little about what you tell them.
You can get a lot of advice from your clinicians about physical limitations on what you can safely do, but you will get tired very quickly and may not be able to sit in front of a screen for long periods of time. This usually improves quite quickly both after surgery and after chemo.
Diagnosis and treatment for cancer is also a massive psychological shock and you may find it changes your perspectives on life. “Why am I spending my time working for these ….. “ (choose a pejorative). These feelings are normal. Also, many of us, when we are going through this, are at a point in our lives when we might be thinking about retirement; this experience may well be the trigger.
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If I have to give up work, can I seek financial support?
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Yes. The best people to ask locally in Oxford are based at Maggie’s Centre, next to the Churchill Hospital. They have experts who can advise which benefits can be applied for.
Alternatively, contact your local Citizens Advice, and make an appointment.
Driving
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The advice is do not drive for 6 weeks. The first priority is not to be the cause of an accident, potentially hurting other people let alone yourself. Secondly, insurers will not cover a person just out of hospital straight after surgery. This could be extremely costly if there was an accident, irrespective of who is to blame. Obviously, not driving is a great inconvenience to many, but should be taken very seriously. Other arrangements will need to be made. After 6 weeks, call your insurers to tell them you are going to start driving again so that it is put on record.
You may find that damage to muscles after surgery make sitting in a driving position for long periods uncomfortable so plan journeys with breaks to stop and stretch and maybe share driving.
You also need to be aware of dumping and be alert to symptoms and stop if necessary. As you become more confident about your diet you will learn how to avoid this but it will still happen. Keep some dextrose tablets with you.
Eating and drinking in the longer term
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You will get more dietary advice than you can shake a stick at :-)
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Post-op your options are often a bit limited but as things progress you will find out what works for you. We are all different.
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Over maybe the first year or so, you will find out what causes you problems. It’s often when as well as what that may trigger dumping.
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It may be better to experiment with new foods in an environment where you feel in control, at home for example.
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Little and often still applies but as your re-engineered GI tract settles you can often be more flexible. You will almost certainly have a new 'normal' but it may not be too different from the past; just a bit more often :-)
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If you are very active you may find it difficult to eat enough to replace the calories you burn, so keep an eye on your weight and talk to your dietitian if this is a problem.
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Many people who have had oesophagectomies have regular (every 12 weeks) vitamin B12 injections as the repurposed stomach has difficulty absorbing B12.
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You may find that sometimes you are happy to tolerate a little discomfort to eat or drink something that you really enjoy. Hangovers are no different.
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Travelling
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Once you have recovered from any surgery and any chemo, there is no reason why you shouldn’t be able to travel. We are all different though so have a chat with your clinicians and make sure there are no issues.
Travel insurance can get a little more complicated. You may be able to find specialist insurers that will give you full cover but it will be expensive.
BUT… many insurers will sell cover that excludes anything related to the cancer, so you are still covered for breaking your leg tripping over a pavement, or being hit by a crazy Italian on a motorcycle. You just need to be confident that nothing cancer-related is going to happen that can’t be dealt with by getting a plane home the next day. You will need to be prepared to answer a fairly detailed medical questionnaire.
Also, bear in mind that if you are having any treatment that compromises your immune system insurers will cancel your cover, so it may be worth deferring buying annual policies until you are reasonably confident that things are stable. Single trip cover can help with this but may be more expensive.
Maggie's Centre at the Churchill has a list of insurers that will offer cover. Also you can often get single trip cover very cheaply when you book a flight. Usually there is no medical questionnaire just a blanket exclusion for all pre-existing conditions, which you will need to argue about if you ever make a claim.
You may feel nervous about being away from home and the network that you have created. It may help to go somewhere familiar for your first trip.
Make sure you have a good supply of any medications (and enough spare to cope with delays) and keep them in your hand baggage. It may be useful to take a copy of prescriptions. You might need to check the legality of any strong painkillers in your destination country.
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If you have a jejunostomy tube still in place the sutures will trigger airport metal detectors and you may get searched; wear clothing that allows you to easily show the security people the tube.
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If you enjoy travelling, it’s a great way to re-establish a sense of control and normality in your life. You may also have a list of places that you want to visit (or revisit) and a feeling that you should do it while you can.
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Sleep
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Your re-engineered UGI tract leaves you very dependent on gravity; all the muscles and autonomous function that your oesophagus used to provide is no longer there. Many of us find sleeping, lying flat, problematic.
Solutions range from building a big stack of pillows to getting a bed with motorised adjustments - a domestic version of a hospital bed. You can also buy wedge shaped pillows (reflux wedge). If you are travelling, you can also get an inflatable wedge. Everyone finds their own solutions and sometimes you just need to improvise.
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Everyone will tell you to allow several hours between eating and sleeping; a walk or even a few minutes standing helps gravity.
The post-op anatomical geometry makes sleeping on your right side more likely to result in reflux while, if your surgical procedure involved cutting through ribs you might find sleeping on your left side uncomfortable.
You may find that a good sleeping position for your UGI results in contorted back muscles particularly if you sleep on your side.
Talk to other patients; we have all found solutions to these problems.
Challenging yourself and how hard to push
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“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming 'Wow! What a Ride!' Hunter S Thomson
We are all different in the way we address challenges and being treated for a UGI cancer is a big challenge in itself.
Having a feeling of being in control of our life is an important factor in our well-being. Some of us get this feeling of control through challenging ourselves and successfully meeting the challenge –these may be big-deal physical challenges like cycling from Land's End to John O’Groats, running a marathon or mental challenges like learning a new language. Or something else entirely.
If you are going to do something physically challenging then its worth discussing with your clinicians, but otherwise just go for it.
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It’s a bit of a cliche but 'listen to your body'.
Lifestyle and Mindfulness
So, every now and then, it’s useful just to stop and think, and reflect on our lifestyle. A healthy diet won’t be as effective if other aspects of our lives aren’t what they could be. To help seed a few thoughts, here’s one or two mindfulness tips – skip these if you think you’ve got it cracked already:
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Self-awareness - a positive step towards making real change
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Ask yourself, “is my current lifestyle good for my own health and happiness, and others around me? If not why not, and what can I positively do about it, even in the smallest of ways?”. Being aware of one’s own strengths and weaknesses is a first positive step towards doing something to look after yourself and others better.
Little things we can do to make a big difference
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Be kind to yourself. Do more things that make you happy. Spend more time with a partner, family and friends, find a better balance at work, try a new hobby or activity, make new friends or just do something you’ve always wanted to do but never thought you would or could;
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Reduce stress in your life. It’s increasingly accepted that stress is linked with poor physical and mental health. Whilst some stress is good, excessive and prolonged stress is bad. It’s not possible to eliminate stress entirely but there are simple things we can do to help reduce and manage it:
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Aim to do at least one bit of exercise each day, however small it is, even just lifting legs or arms from a sitting position or going for a short walk. The ‘doing’ of exercise is hugely rewarding, both mentally and physically. Set exercise targets for yourself and try to improve on them over time.
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If your job is stressful but you can’t change it, aim to take a proper break each day, do not work when you don’t have to – use that time to relax, do something else.
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Do something that takes your mind off daily life, for example reading a good book, watching a film, making something, cooking healthy meals or gardening.
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Do what you can to smile as often as possible – have a joke and a laugh with someone at every opportunity. Laughing is a tonic for the mind.
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Be kind to others. It’s not hard. Listen, be considerate, have empathy for other people’s views, beliefs and feelings. Small acts of kindness go a very long way. Being kind to others makes us feel better too.
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And finally, think of your diet as part of your lifestyle. A healthy diet undoubtedly improves physical and mental wellbeing and is relatively easy to do. It becomes a natural and rewarding part of a fuller lifestyle. If you are interested in this, please read the section on longer-term diet.
Physical wellbeing - keeping fit and active
Before the operation it helps to be as physically fit as possible. The fitter you are the faster you can recover from the operation. But a positive mental attitude is almost more important. We have seen it so often. Those with the determination to beat the Big C recover quickly and get back to living well at the earliest opportunity.
Life after cancer can become an enriched experience, the knowledge gained by us is potentially transforming. Making changes that suit each of us, based on our own circumstances, can be empowering, so I hope you have gained something positive from reading this, and good luck.