Category: General information

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!

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.

 

reflux volcano

Reflux

In search of the Holy Grail of Antacids

I have not found a solution to reflux yet and trying has been a bit of a torturous journey. Heartburn was my presenting problem. I had never suffered before and thought my stomach was the least problematic part of my vintage 1960s anatomy. How wrong I was.

Omeprazole

Despite my hatred of medication, after diagnosis I relented and went on omeprazole, a proton pump inhibitor (PPI). This was 20mg once a day and it worked for a while but the heartburn returned during chemotherapy so I upped the dose to 20mg x two times a day and stayed on this dose all through surgery. I tolerated the drug pretty well except for the fact I still had occasional heartburn.

The vagus nerve is responsible for acid production and as this is cut during surgery, one would hope that acid reflux would be a thing of the past or in my case, the not too distant past. I continued on the omeprazole but was aware of a sensitivity in my oesophagus. In addition, I had the post-oesophagectomy cough which could get quite violent at times.

Lansoprazole

At around 3 months post-op, I mentioned the sensation to my GP who put me on lansoprazole, another PPI.  Again I tolerated the drug very well and the cough pretty much went away. However after about 2 months on lansoprazole, I developed colitis, which was consistent for 3 weeks. I took to the internet to find out the cause and from the medical literature, it was pretty clear that PPIs can induce something known as microscopic colitis in some patients – approx 15%. I needed to test whether it was the medication so it was with much trepidation that I decided to come off the lansoprazole cold turkey and see if it cleared up. It did. I braced myself for the acid rebound but it was not too bad and settled to a lower level within a couple of days. The cough came back a bit but not half as bad as in the post-op weeks.

Ranitidine

My GP then gave me ranitidine (zantac) assuring me that it shouldn’t cause problems. This is where I am up to today. Ranitidine gives me dullish headaches and makes me feel quite sleepy in the afternoon. It also makes me feel a little dizzy and a bit vague so my next change will be either back to omeprazole or esomprazole (Nexium). However there is no guarantee that either of these will induce colitis again.

What really helps reflux
At night

I am lucky in some respect as I do not have any problems at night and sleep relatively upright as I have described in the sleep post. Apart from sleeping upright two things help at night

(i) Gaviscon Advance: Gaviscon Advance LiquidA large slug of this white gelatinous gloop keeps the acid from creeping up during the night.  This comes in peppermint and aniseed flavours. Why oh why they have to flavour it at all is beyond me – I’d take it if it was flavourless and still worked. The secret to Gaviscon Advance is the whacking 1000mg dose of alginate which mixes with acid to form a raft over the stomach contents and protect the oesophagus from rising acid.

(ii) Food:  Yes you heard right – having something in my stomach seems to really help – not just at night but all through the day. Obviously the choice of food matters – so a vindaloo is not ideal – instead a small, lightish carby snack that is easy to digest should be fine.

During the day

As well as having food in the stomach, avoiding bending after eating is obviously a good way of preventing reflux. Sometimes it is necessary to pick something up off the floor, eg what if you dropped your keys. For scenarios such as this I got a helping hand and it is fantastic.  It picks up coins easily as there is a magnet at the end. Very good for picking up random clothing and loading in the washing machine. I can also recommend a long handled hoover like any of the Dyson cordless varieties as they are light and you can stand fairly upright whilst hoovering.

 

In search of the perfect post-oesophagectomy exercise

Prior to being diagnosed I tried really hard to adopt a healthy lifestyle and diet.

For about 3 years, I had been going to yoga once or twice a week and pilates once a week as well as walking several miles a week when the weather was decent. I was pretty fit when I went for the pre-surgery exercise test and kept relatively active during my chemo.

After surgery, I forced myself to walk the corridors of the hospital to build up my strength. It was tough going as the incisions pulled you forward all the time.

It was 18 days post-op when I walked to our nearest post box and back which was about 1/2 mile and maybe another week before I walked a 2 mile local route which I have done many times. I built up my strength over the weeks and was able to get back to pretty much normal activity by 4 months.

At this point I returned to pilates and was able to do most of the exercises but being on my stomach and back did not feel great even though there was no actual acid reflux.

So… apart from walking I am still in search of the perfect exercise. I could try tai chi but it is a bit tiresome to learn all the moves and spin classes could work – running is out as I’ve never been a runner. Weight training is a good idea too as this strengthens the bones but everything in moderation.