Category: General information

Another lockdown update

It has been nearly 6 months since the start of lockdown. I thought I would update again as there are a few things that have changed or are going to and reflux has raised its ugly head again.

Exercise

I am trying to get fitter. Grabbing a week in the Lakes in July made a huge difference mentally and physically as we had a change of scene and managed lots of hillwalking so my fitness is not too bad.

I am considering doing sprint interval training (SIT) equating to 7 minutes a day. My rationale being the shorter the time need to bounce my remaining stomach around and still gain benefits from cardio etc, can only be a good thing.

Eating

I am pretty much down to 3 meals a day with a couple of smaller snacks and have halved the portion of Ready Brek for breakfast. My lowest weight post-op was 2 kg below my normal weight and this was OK so I’m happy for my weight to stay 1kg below. I can gain weight now so everything is cool.

Breakfast is 15g of Ready Brek, mainly for the additional vitamins and minerals it offers along with a good handful of berries and a good sprinkle of flaked almonds, pumpkin and sunflower seeds and the off spoonful of yoghurt or kefir.

My supper portion is being reduced with a view to ditching it altogether. Going to bed with an empty stomach did not work well at first but I feel I can do without the extra calories now and maybe my stomach has stretched so it sits lower even when empty.

Sleeping

Since lockdown, my sleep has been really good – napping is rare and the fact there is no urgency to be anywhere in the morning and no commute, means I can sleep in til 8. In fact I have returned to my younger, night owl rhythm of going to bed late and waking around 8 or 8.30. I wonder if anyone is doing any research on circadian rhythms during lockdown…..

Reflux and oesophageal sensitivity

The burning sensation of reflux has increased recently – it does from time to time and I am eating Gavsicon advance like sweets. Since my op, my oesophagus has felt sensitive but given the omeprazole I take, this may be an element of nerve damage/sensitivity triggered by secretions or food rather than it being actual acid.

Troublesome foods

Certain foods and textures definitely cause me problems, ie I can feel them or they make me cough so I try to avoid as much as possible. I loved the story of the Princess and the Pea when I was young and now feel like the oesophageal equivalent as I can detect the smallest amount of chilli, ginger, pepper or similar ‘hot’ spice in any food.

Things like breaded, crunchy and lumpy food can also cause me to cough. Very tough, well done meat or dry meat never held no pleasure in the culinary stakes but now they are impossible to get down. Stringy, tough and very sinewy meat is also one to avoid.

Things that my stomach does not like

Below is a list of things that cause problems due to displaced gastric contents, whether this is in fact acid per se, who knows but it feels unpleasant:-

  • Lying flat – prone or supine either stationary or during exercise
  • Lying on the left side even propped up, although can get away with it if sitting up and leaning on a cushion/pillow
  • Lying on the right side with knees drawn up
  • Sitting with legs drawn up
  • Going out for long walks can sometimes cause problems so I try to remember to take food or gaviscon with me
  • Bending over or squatting down even when I have not recently eaten
  • Types of food listed above
  • Tight clothing around the middle and although I have not succumbed to elasticated waist trousers, I only wear a belt if I really have to.

finishing on the positives

Here is a list of things I can do but couldn’t a few months ago

  • Eat less frequently but with larger portions – NB these are still very much reduced
  • Sleep more on my right side than I could but with a decent sized, solid pillow for support
  • Walk further, BP and resting heart rate are nice and low
  • SIT maybe the best exercise for oesophagectomy patients
  • Dumping syndrome is relatively rare now – maybe once a month or less.

I am planning to get some more bloods done soon to see if everything is tickety-boo and will use thriva.co for this as mithering my GP is also something I want to avoid at the moment.

Two years post op and now in lockdown

Two years have now passed since I had my oesophagectomy.  I’ve been back at work for nearly 18 months and life was settling down to the point that in 2020, I planned to travel alot more. However, the corona virus pandemic has since put an end to that idea.

My drawing of a Coronavirus
Coronavirus

The UK has been in lockdown since mid-March and we are still not out of the woods. Although a remarkable time, it is not without stress or worry and not a time to be confident about health in any shape or form. However it has provided me with the opportunity to switch my attention from cancer-related art to drawings about my experience in lockdown. I have been posting my drawings on twitter and instagram and still have lots of ideas.

In terms of health, I can now eat larger portions and my weight has started to rise ever so slightly. I am in a bizarre situation where I need to rein in food portions. Regular meals are still needed as I still get reflux on an empty stomach but eating is no longer causing me any major issues. In fact I can now eat salads again, albeit small ones and still feel I am not losing out on calories.

My meals are more vegetarian and pescatarian now with meat once every couple of weeks or so. Since coffee outlets are closed, I kicked my daily take-out coffee habit and eating out has stopped for the time being. We now have a vegan in the house so we all drink oat milk instead of cow’s milk, which is actually very tasty and surprisingly versatile.

Exercise is also work in progress. I started to do yoga again and lockdown has provided an opportunity to walk most days. Walks are around 1-3 hours duration (3-8 miles) and I also do some High Intensity Interval Training. My pre-op fitness is returning albeit my upper body strength needs improvement.

I am still keeping an eye on my bloods but lockdown has prevented me from requesting these from the doctors. I have therefore used an online lab to do baseline bloods and this has worked well; so well that I will continue to use them to take a bit of pressure off the NHS. I used Thriva.co to test vitamin B12, D, iron, folate, cholesterol and HbA1c. Most values seem to be optimal but D has definitely dropped. Even before my operation, I did not absorb vitamin D well from food and had to rely on supplements and sunshine. This year I started supplementing vitamin D3 but the weather has been so good, I am hoping that 20 minutes a day has restored my levels to those of summer 2018.

Long term use of PPIs is well known for causing issues with bone density. I wondered if it interferes with vitamin D absorption which in term affects bone or acts directly on calcium absorption. Who knows but optimal vitamin D levels are definitely a good idea especially when supporting a healthy immune system for fighting covid-19. In fact there are one or two articles in the literature that hint that supplementing might be a good idea.

As for susceptibility to covid-19, I am not sure how I stand against the virus. As I have a permanent cough that kicks off with reflux and certain foods as well as previous chest surgery, I am concerned about my risk. I am also not sure how my immune system is after chemo. So I try really hard to look after myself and my family and have been extra careful when out, especially in the supermarket. I have also been working from home since before the whole country locked down and will remain doing so in the medium term.

I still get pain in my right shoulder but it hasn’t bothered me as much recently. Maybe because I am not sat at my desk for 7.5 hours a day. I find I move around more when working from home.

Dumping is very infrequent now and tends to occur after drinking something too fast, acting like Dyno-Rod on my system. Nice. Chocolate consumption did increase this year to the point that I was eating more than I should. The increased sugar intake not only created cravings, it also created bad shakes. Something I rarely suffered with. So I have reined in the sugar again and gone cold turkey with chocolate and I have not had a problem with dumping since.

In conclusion, I am doing well. The world in which we live is not quite the same as it was so I remain extremely cautious when it comes to monitoring my health but will continue to eat well and increase my range of exercise as and when I can.

 

 

Hats off to Ivor Lewis, born 27 October 1895

Ivor Lewis was an imminent surgeon who pioneered the right sided thoracic and abdominal approach to excision of carcinoma of the oesophagus. He presented this technique on 10 January 1946 as part of the Hunterian Lecture at the Royal College of Surgeons of England. Patients like me are thankful that Ivor Lewis had the foresight to develop this technique as all modern oesophagectomies have evolved from his original work.

Here is a very detailed account of his working and personal life from the Dictionary of Welsh Biography, an online listing of individuals who have made a significant contribution in Wales and beyond.

 

Confessions of a FLOT patient

FLOT stands for fluorouracil, leucovorin, oxaliplatin and taxotere (docetaxil) and is the standard neoadjuvant chemotherapy for oesophageal cancer.

After my FLOT treatment, I wrote a little booklet called Confessions of a FLOT patient to describe the experience. It is pretty much a ‘warts and all’ description of side effects and recovery. It also contains some tips on what to do before treatment starts. I hope it will help people to be aware of the type of symptoms to expect.

 

Oesophagectomy in the media

In May 2019, there were two oesophagectomies reported by the BBC. The first was on Surgeons on the Edge of Life. This featured an oesophagectomy done at Queen Elizabeth Hospital Birmingham by surgeon, Ewen Griffiths on a patient with a damaged – non-cancerous oesophagus.

The second was supported by Cancer Research UK and was performed on a cancer patient by Professor Tim Underwood at University Hospital Southampton and was filmed in 360 degree footage.