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.
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.
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.
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.
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.
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.