Ten outcomes at one-year post-oesophagectomy

I haven’t posted anything for a while as I have been getting on with life.
I recently passed a year post-oesophagectomy so wanted to mark it with an update of where I was health-wise. I am still working through a few things but overall life is good.  Below are 10 outcomes/issues starting with the ones causing the most trouble and what I am doing about them.

1. Staying hydrated

Staying hydrated is my greatest challenge to date. I can drink a pint of water in the morning before food and then a cup of tea or coffee mid-morning but then I tend not to drink much until evening. Problems encountered through lack of fluids include mega migraine headaches and dry eyes.

I have found that drinking water is a matter of physics really. If you have a large meal then drink, the fluid can sit on top and gently seep through. Problems occur when the new stomach has only a bit of food in and the addition of fluids can wash things through somewhat quicker, fast flowing into the area downstream, if you get my drift. It is not an exact science and I am still working on trying to get more fluids in, in the afternoon and evening. I drink some water towards bed-time but it is not the best time as it can cause night-time reflux.

I am finding however I can drink more with meals now as long as it is before I eat. This is one of the biggest things I miss being able to do.

Goal: Try to drink more in the afternoon, albeit in small quantities.

2. Reflux

I had two fab months where I was off all antacids except Gaviscon but it got out of control, so I am back on PPIs and life is better. I only take 20mg of omeprazole a day and the occasional esomeprazole if it kicks off again. I have a fairly regular Gaviscon Advance habit and can often take two at night and munch a couple during the day. Reflux still tends occur when my stomach is empty and oddly drinking water at this point seems to add fire to the flames. I do wonder whether the physical presence of water in my empty stomach is causing the issue as the nerves in the oesophagus area are more sensitive. It may not be acid per se as surely the water would dilute any acid present. If this is the case it means I can stop worrying about it.

A change of routine or eating times due to being away from home can also cause me problems so for these times better preparation is required in terms of taking an extra dose of PPI. In addition, stress seems to cause acid even though medical evidence says otherwise. On the whole though, it is a lot better than it was and I hardly cough now.

Some foods do cause noticeable problems and these mainly occur when eating out – the best foods are freshly cooked and plain and simple, like a small piece of good quality meat or fish with some vegetables – these cause the least problems and are in fact my favourite foods.

Goal: Try to keep on top of reflux symptoms and take extra meds around holidays and days out and generally avoid letting the stomach get too empty. I still need to identify which foods cause problems.

3. Fitness

Before diagnosis, I was probably the fittest I had been since my teens when I could cycle 15 miles a day. Yoga and pilates twice a week and climbing Scafell Pike in the summer before diagnosis. Pre-op and post-op distances on the flat are similar but require more food breaks. After tackling a few inclines recently, I realised how unfit I was cardio-vascular-wise. I am no further on from my post about finding the perfect post-oesophagectomy exercise and although I rarely sit down during the day, I am still relatively sedentary. I think it is something I will have to work out myself as there are no exercise programmes for oesophagectomees. I still really miss going to yoga and can still do the upright poses but one to one classes are too expensive.

Goal: Do more hill walking to improve cardio-vascular fitness and work out food requirements. Also improve arm and shoulder fitness as above. Still consider tai chi.

4. Dumping syndrome

This is something that is viewed as a major issue for us folk in the oesophagectomy community. It is a spectrum of symptoms and I only experienced the extreme form of DS during the first few weeks post-op and even then, infrequently. Now I get problems if I eat very sweet things eg chocolate but this is improving. Sometimes a quickly imbibed cup of tea or coffee can cause issues as described under Staying Hydrated so better to leave some than rush it. My main issue has always been the reactive hypoglycaemia side of things. It used to happen most mornings but only occurs if I have a late breakfast, or have gone longer than 3-4 hours between meals or eat a highish carb meal too quickly. The food hitting my digestive system after having nothing for a prolonged period seems to be the cause. Symptoms include palpitations, hot flushes and a general jittery, out-of-body vagueness. It usually passes after 30 minutes, with sitting quietly or better still sleeping, as the best remedies.

Goal: The best days are when I can take my time eating and can eat on time and drink slowly and carefully. I also now weigh up the risks of eating chocolate or something sweet according the situation ie not before a long car journey or important meeting.

5. Eating and weight

Although never a big eater, quantity-wise I now manage a good half to three quarters of the portions I used to eat. As a result, my weight is steady and hovers about a pound or two under my normal weight. I have always been a size 12 but I can now get in some size 10 clothing, which is good. Over 6 months ago, I was at my lightest, ie half a stone lighter than normal and edging closely to being underweight. This was mainly caused by lansoprazole-induced colitis.

Goal: To be able to eat and exercise more and maintain weight.

6. Food types

The food I eat now is starting to resemble the food I used to eat more and more. I have moved away from cottage pies and softer foods, although I still enjoy these occasionally. I eat small pieces of good quality meat and fish now and I think that is healthier all round. I still have smoothies with spinach, avocados and strawberries.  I love fresh strawberries but sometimes have problems eating them, possibly due to the scratchy seeds on the outside. Blending them is a great alternative. I still avoid anything spicy or highly peppered as it stings the oesophagus, even foods containing ginger do this. I also steer clear of shellfish just in case of infection and citrus fruits. I have recently tried nectarines and peaches with no issues although apples can cause trouble. I still avoid anything that is obviously very sweet, eg cakes with lots of icing, buttercream and/or jam along with sweet sauces. I do like the odd scone or chocolate eclair.

Goal: To continue to move towards healthier food as the mix is still not quite right.

7. Mental health

I would say my mental health was pretty positive. Having had cancer and gone through the horror of treatment and surgery, I admit I am still tethered to the whole cancer circus and my mortality crosses my mind more frequently than it probably should. However I can usually shake off the morbid feelings by keeping busy or thinking about and living in the present. Going online on the health boards eg Macmillan or OPA often makes my mood tank. However I do like to see how people are doing and take comfort in seeing the same names cropping up in the threads and reading they are OK. I still follow new research into oesophageal cancer but it is clear, there are no major miracles around the corner. We are still a long way off identifying those who will succumb to oesophageal cancer. I still think there is work to be done around genetics and identifying first degree relatives of those with oesophageal cancer or Barretts has some merit. Better detection of ‘at risk patients’ is the only real weapon there is in the armoury.

Goal: Continue to stay positive and enjoy life to the full. Book the odd pampering session.

8. Bloods

As a post-oesophagectomy patient, I am proactive about monitoring my bloods. Another set was done recently and everything is optimal. I am absolutely delighted as I do not take any supplements in tablet form. The only supplement I have is Ready Brek, which is fortified with iron, B vitamins, vitamin D and calcium. My LDL cholesterol is slightly out of range but it has been for years and this has not changed even after being on full fat milk and Greek yoghurt for a year. The overall ratio of HDL/LDL is well within range. To see which bloods I had done and ranges, click here.

Goal: Have bloods done every 12 months or more frequently, if there is a problem.

9. Sleep

Even though I have to sleep upright now, sleep is good on the whole. My bed was inclined on blocks of wood but since being away a few times the blocks have been removed. I still have a large number of strategically-placed pillows and a memory foam-pillow chock under my rear-end to stop me slipping down. I still eat before retiring as going to bed on an empty stomach causes nocturnal reflux. My supper is usually something bland and easy to digest like a bowl of cornflakes or Oatibix. Sleeping on the right angled slightly backwards suits me best as this prevents the “squeezy feeling”. Left side sleeping guarantees reflux and the aforementioned unpleasant pressure. I do wake up but rarely due to coughing now.

I still miss being able to sleep flat and I get super thirsty at night. Addressing the latter is work in progress as mentioned above. The other important thing to note is sleeping upright can play hell with your neck and back so both these need extra padding to keep them from adopting an unhealthy position overnight.

Goal: Trying to stay better hydrated and keeping adapting the pillow position so I do not move and aim for a zero-gravity situation. Keep trying to sleep more on the side again – I can but try as my insides are ever changing.

10. Pain

I had bad intercostal neuralgia after surgery caused by the thoracotomy and broken rib – it took 3 months to calm down and occasionally when I have tight clothing on, the close contact can cause some discomfort in the area under the ribs on the right side. My main issue is pain in the right shoulder – near the drain site. It smarts from time to time and can be quite distracting. Stress seems to be a factor too. I also find that in damp, cold weather, all my incisions complain a bit – quite bizarre.

Goal: Book regular shoulder massages to see if this helps and start to improve arm and shoulder strength using exercises. Book a holiday in some sun-kissed destination.

Reflux revisited. A month off all prescription antacids……

A month has gone by since I wrote the first reflux post. I have not taken PPIs or ranitidine during this time but have used Gaviscon.

Result: my acid is no worse than it was when on PPIs and I would even go as far as to say it is bothering me less. I still get the occasional burning sensation when I have eaten too much and this tends to occur later in the day. Bending forward after eating or drinking is still a no no.

Getting to this point has been a bit bumpy but not too bad – once off the PPIs, my cough came back with a vengeance, however even this is now improving. I had some discomfort in my oesophagus but too is calming down somewhat. Chewing gum has helped alot and sticking to easy to digest foods but I still eat quite a few high fat foods.

I will continue to monitor for another couple of weeks but being off all meds rocks!

Pancreatic insufficiency

I confess I do not know much about pancreatic insufficiency or to give it its full title exocrine pancreatic insufficiency (EPI).  However, according to this article I, like other oesophagectomy patients, could already have an element of this as soon as 3 months after surgery or could be at risk in the future. It is not confined to oesophagectomy patients, anyone who undergoes any surgery or disruption to the GI tract is potentially at risk.

The reason it occurs is because the lovely balance of the GI tract, as described at the beginning of the previous post on nutrition, is mightily disrupted by surgery. It causes a reduction in the levels of enzymes produced by the pancreas. This results in food not being broken down properly and the full dose of nutrients does not get absorbed by the small intestine. In particular the absorption of fat and fat soluable vitamins suffer and results in a charming thing called steatorrhea – fatty stools. 

It does not take a genius to work out that if you do not absorb fat you will lose weight and loss of vitamins like A, D, E and K is not an insignificant knock to an already compromised physiology.

Testing for EPI from what I gather is in the form of stool and blood samples. 

If your levels are found wanting, you can be offered pancreatic enzyme replacement therapy (PERT). Sounds amazing but it is simply taking additional enzymes with meals to support your pancreatic function. CREON seems to be the drug of choice in the UK and this is only available on prescription. The Creon website describes in delightful detail the other symptoms of EPI so enjoy.

Over the counter digestive enzymes

What I do not know is whether over the counter digestive enzymes do the same thing as Creon. They will almost certainly need to be enteric coated. I will do some digging online.

 

 

 

Post-surgical nutritional deficiencies and testing

This is such a massive topic I am going to try to keep it brief.

Despite the modern pressure to go vegetarian or vegan, the brains of our ancesters would not have increased to the size and complexity that they are if we continued on the same diet as gorillas. We have evolved to be omnivores and there is evidence to suggest fat extracted from brains and marrow contributed to a nutrient rich diet. We are unlikely to get the digestive system of ruminants in the not too distant future. Even Tibetan monks in the Himalayans eat the occasional yak.

We have the acid containing stomach like carnivores to break down meat and protein; a pancreas and liver to break down carbs and fats, a long small bowel to absorb nutrients and a large bowel to absorb water and process fibre. If it all works, it is a finely tuned engine.  Clearly oesophageal cancer patients have this lovely dream-like scenario blown clean out of the water when they get diagnosed, leaving them with a whole host of new stuff to deal with. As we eat smaller meals, everything we eat has to count in terms of calories and nutrition. Unless you know what you are doing, this is not the time to stop eating meat. 

The evidence

It is not surprising that after oesophagectomy (partial gastrectomy), nutritional status can go into decline due to stomach reduction or removal altogether. A number of patients are not warned about deficiencies. Is this because some dieticians are in denial that deficiencies occur or are they only involved for such a short period of time, they never get chance to see the scale of the problem? Whatever the reason, some forward thinking dieticians in London have done two pieces of work and admit that they still do not know how best to address longer-term deficiencies in post-oesophagectomy patients.

This enlightening audit by Alice Kidd in 2014 is well worth a read. In addition in 2017, a team at Imperial College London published this paper on the same subject. They report that two thirds of oesophagectomy patients get deficiencies in ferritin, B12, vitamin D and zinc and recommend regular screening but they do not specify a frequency.

I feel very strongly about the empowerment of patients over their nutrition, so much so that I am going to stick my neck out here and say three things:-

(i) be proactive and get to know your blood results and what is normal for you, preferably before any treatment starts

(ii) do not rely on dieticians or specialist nurses to remember to test you or even think it is important – take it from me – it is important. They will only do it when clinical symptoms arise and by then you will be feeling unwell.

(iii) ask for tests regularly or get them done privately.

OK – let’s break this down.

Baseline blood tests

I have already recommended getting a baseline blood test in an earlier post on preparing for surgery.  Ideally get one done before chemotherapy starts. The key values as shown in the papers above are iron, ferritin, calcium, magnesium, vitamin D and vitamin B12. You could throw in a fasted cholesterol and also a HbA1c plus liver and kidney function and bone profile for good measure. 

Bloods are done prior to each chemo appointment so ask for the results, ask questions and keep an eye on any changes.  Any doctor or health professional who can look you in the eye and tell you, you might die from sepsis or on the operating table, should not have any problem sharing your blood results with you or what they mean. Most of the time, the lab will flag up any values that fall outside the ranges, whether it be low, high or just on the cusp. It is also worth noting that trends or obvious declines or increases are what to watch not the odd fluctuation. This is why a baseline is good as it shows what is normal for you to start with. The caveat for this is if the illness is already causing problems with swallowing and eating in general and levels of certain vitamins and minerals like iron have dropped.

What do the numbers look like?

Below is a table showing each parameter, units and range to give an overall feel for what you are looking at. It is worth noting that different hospital and indeed GP labs have slightly different ranges but we are only talking very small amounts. It is the lower and upper end of the scales you need to keep an eye on. I will provide links to valuable sources of information but there is so much pseudoscience on the internet – suffice it to say that if these are all in range – you can say that you are biochemically sound even if you feel a bit off kilter.

Parameter Value Range  Meaning Source
Vitamin D 64 nmol/L (50-200) Adequate NHS Labs
Vitamin B12 612 ng/L (180-910) Normal NHS Labs
Folate 8 ng/mL (>5.4) Normal NHS Labs
Iron 17 umol/L (5-33) Normal NHS Labs
Ferritin 189 ug/L (10*-291) Normal NHS Labs
Calcium 2.4 mmol/L (2.2-2.6) Normal NHS Labs
HbA1c 37 mmol/mol (<42) Normal NHS Labs

Going forward

I will endeavour to get my bloods done every 6-12 months. If you are in decent shape before surgery and can eat relatively well after or have a jej feeding tube, your nutritional status should be OK for the first few months. It may go into slight decline when you start on real food. This can be due to the reduced volume of food, insuffient enzymes to break macronutrients down or reduced acid due to reduced stomach capacity or acid reducing medication like omeprazole.

B12 needs something called intrinsic factor in the stomach to be absorbed from food – so without exception, all gastrectomy patients will need lifelong B12 injections and probably iron supplementation. Iron is problematic as the body does not absorb it too well anyway. Try to eat iron rich foods where possible alongside something with vitamin C to help absorption. Ferritin levels represent stored iron and if these remain optimal you should be OK. In the table above it says that over 10 is OK for ferritin but there is some anectdotal evidence to suggest that below 20 and your hair may start to suffer. It is also worth noting that one in 200 people have a gene for haemochromatosis which is the over storage of iron in the blood so it is a good idea to have iron levels checked as unnecessary oversupplementation can also be extremely harmful.

Partial gastrectomy patients as stated above have been shown to need regular B12 and iron. You could try eating a bowl of Ready Brek each day which is fortified with B12, iron and folate. I do not know if this is enough to keep deficiencies at bay but do not wait for their values to bottom out, as by then you will feel unwell and you already have enough to deal with.

Vitamin D is important for the uptake of calcium into the bones. Being in full sunshine for 20 minutes a day helps to make vitamin D in the skin or you can absorb it from food.

Private testing

If your health team or GP are not forthcoming on the testing, exercise your consumer rights and buy your own. Vitamin D testing can be done cheaply and simply via a prick test.

For general health tests, Micki Rose has a great service and is very knowledgable over a whole wealth of tests. I have used Micki’s site a few times to order tests.

There is a new service on the market called Thriva.co – I have tried using them but the amount of blood required is impossible for me to extract via a simple prick test. You may have better luck.

These are just ideas – the best people to do your tests are your GP or at the hospital at the time of a follow up.

Advice for those who are not natural positive thinkers

Serial optimists need not bother reading this post as they are naturally wired to think positively. Some of us however, fall into the realist or pessimist/half empty category.

If I had a fiver for everytime I was told to think positively this year (post-Brexit permitting), I could afford to go on a decent European city break. It is an easy comment to make, often by former cancer patients, as it worked for them. However it paints a false picture of real life and is clearly impossible to achieve every day.

You rarely, if at all, get told to think positively by a health professional, particularly a medic. These people have seen and know too much to even dare. If you could read the mind of the doctor in front of you, what they would secretly be thinking is “Look I’ll do my best, the odds seem good but who the hell really knows, medicine is not an exact science”.

What’s it all about?

In my opinion, saying ‘think positive’ to a newly diagnosed cancer patient is the equivalent of saying ‘Cheer up’ to a person with depression. Easy to say when you are in the light but is meaningless when you are in a very dark place and lack the resources and ability to find the lightswitch.

Yes, I understand the thinking behind cognitive behavioural therapy (CBT) but when I hear ‘think positive’ it makes what is left of my stomach turn over. It can send my brain into a crisis situation where it was constantly thinking WTF!

Dealing with cancer is hard enough but to know how to even approach putting a positive spin on the volume of thoughts, you’ve got me there, I give in. Often with CBT I end up trying to hoodwink myself and that in itself is ridiculous – the thought has to make sense and needs the evidence to back it up. In the end, enough time goes by after the ‘think positive’ comment is made for me to forget about it and be distracted by something else and that is my point. Distraction can and does work as the brain can only really deal with one thing at a time.

Do not Feel Under pressure to see the glass half full

If you think you can think positively and want to, then go for it, that is not what I am saying. I would turn on that switch if I could. My mind likes to do things differently.

What is the alternative?

There is clearly no benefit in catastrophising minute after minute, hour after hour about what might happen or indeed what is going to happen. This leaves you with no power at all and is horrible and extremely draining.  Is it better to be in blissful optimistic ignorance though?  There is a balance.

If you must worry – then put aside a set period of time (30 minutes) to let your thoughts run wild but then you must stop and start doing something else – anything to keep that busy mind occupied. Worries do come and go as you move through treatment so the initial ones should go completely or change into something else. Thankfully worries are not set in stone.

Mind managing strategies

Here are a few helpful things, in no particular order, to help manage those ‘what if’ convos in your head.

1. Get and stay informed: If you are someone who likes to know beforehand – finding out what you are dealing with is by far the best thing you can do to rein in your worries. Write down your questions and ask your health professionals for the answers. Get in touch with other patients and ask them about their experiences. However do the latter with caution – some people have had a rougher time than others and this could have the opposite effect.

2. Learn something new: This is a pure, hard core distraction technique. You will probably end up being well versed with your cancer but learning something new (not connected with health) keeps the brain stimulated even though it may be a struggle to get started. Avoid the big or unachievable like an academic course – daily use of Apps like duolingo for languages are fab. I learned to draw this year and it really helped me visualise my thoughts. I can not recommend this enough. If you don’t fancy drawing, journaling is shown to be good and scoring yourself out of 10 everyday is also helpful. Practicing mindfulness is also a good way to try to settle down your mind. The Headspace app is good as you can build up your time starting with only a few minutes.

3. Family and friends: Again support from real humans is an incredibly important part of getting through difficult times. Hearing about what a fab time others are having and their exotic holidays can be hard but interaction with others can also take your mind off your own situation.

4. Video games: My saving grace this year has been a video game called Criminal Case. Research studies have shown that playing video games can relieve chronic pain (google video games and chronic pain if you don’t believe me). This worked for me when my nerve pain was at its worse. Other games I played were Luminosity brain training and Spider Solitaire.

5. Read the books you have always wanted to read and binge watch those TV box sets: I struggled with the attention to read at times but it is something I love and getting lost in a book is magical. I have managed to read quite a few books this year. Binge watching a number of series is something we rarely do but have done so this year.  Notable ones that kept us busy were Lewis, Bosch and Rev.

6. Get out in the open for a stroll: Moving about post-op is difficult as the energy may not be there, you maybe in pain and it can be a real effort generally, however getting out even for a short constitutional can make all the difference. Besides it is hard to really worry and walk at the same time. A walk clears your head and makes you feel you have achieved something. You can reward yourself with an afternoon nap when you are done.

7. Get out and see something new: Also not rocket science but if you want to see a show or visit somewhere and you have the energy and the cash – get on and do it. Anything to get yourself out of the house. Maggies centres or centres like Beechwood do extremely valuable work. Having a couple of treatments or counselling sessions booked in gives you a valuable anchor to your week and something to look forward to. Therapists at the above places have met numerous cancer patients and have more creative and sensitive ways of expressing themselves.

In conclusion then, the basis of the above is essentially filling your time with more productive stuff than thinking about death and disaster. Mark Twain summed it up by saying “I’ve had a lot of worries in my life, most of which never happened.” Give that man a coconut.