Virtual art exhibition on twitter February 2020

February is oesophageal cancer (OC) awareness month. Throughout the month in 2020, I am tweeting an image a day (twitter name is @annorthernlass) #ocvirtualart.

I am rubbish at fundraising so this is my way of getting the message out and showcasing the amazing treatment our NHS has to offer to tackle this cancer.

There is currently no easily identifiable cause of OC – so essentially my message to you is as follows:-

  • be vigilant about heartburn and if you have it regularly, always get it checked out by your GP
  • do not rely on antacids and omeprazole without having regular checkups
  • if you have Barrett’s oesophagus or a hiatus hernia, ensure you are under the radar of a UGI specialist and are having regular endoscopies (have a camera down your throat).
  • Anyone with OC or Barrett’s in the family should also be vigilant especially if there are stomach related symptoms such as regular nausea, heartburn, reflux, a persistent cough especially when eating, hiccups or difficulty swallowing.

For more information – visit the links page.

New publication – The Art of Oesophageal Cancer

Art of Oesophageal Cancer book coverThe Art of Oesophageal Cancer is a visual diary of the ups and downs of treatment and recovery. It is an A4 booklet containing over 20 drawings, 14 of these are part of an art exhibition of the same name.

The book may be of interest to oesophago-gastric cancer specialists and their patients. Books will be available free to delegates attending the conference for Association of Upper Gastrointestinal Surgeons (AUGIS) @augishealthon Thursday 26 September 2019.

Further copies are now available by contacting carotidbodypublishing@gmail.com or by using the contact form.

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.

The Chemo Legacy – lingering effects after 3 years

While rehashing my FLOT leaflet in an earlier post, it got me thinking about medium to long-term side effects so here are a few reflective points at three years post-chemo.

Nervous system

The nerve agents have definitely affected my hands and feet. I can only handle or carry very cold items for a few minutes before my fingertips start to feel uncomfortable. The same happens if my hands get cold so I usually carry a pair of gloves and need two pairs in the depths of winter.  Walking barefoot on very cold floors is uncomfortable and I often wear socks or sandals around the house.

Migraine

I do not know whether it was the chemo or the cocktail of drugs I had during and after surgery but I no longer get migraines. The only time I get headaches now, is if I do not drink enough water and I usually wake up with one.

Hair

I noticed my hair starting to grow back 12 weeks after the last cycle. It grew back thicker, curly, course and grey. My husband said I resembled a fox terrier. I’ve lost count of the number of haircuts I had once it got more established and my hair is as long now as it was when I was diagnosed. My hair is also in pretty good condition and has gone back to its original texture ie no longer curly. I waited 12 months since the last cycle before I started to colour it again. Hair grew back elsewhere too. I noticed my nose ran for months after chemo probably due to hair loss in the nasal cavity. Although a kind of rhinitis persisted for months, I can not remember when this stopped being a problem.

Hormones

My ovaries put up a fight at the time but chemotherapy definitely signalled the start of menopause for me. Whether it would have happened anyway, who knows?

Hygiene behaviour

I was careful about touching surfaces when out and kept my nose and mouth covered with a scarf all through treatment. This has been great training for dealing with the coronavirus pandemic as I easily slipped back into these prelearned behaviours. The sterile gloves I bought at the time have also come in very useful.

Top tips prior to starting FLOT or other types of chemotherapy

Here are a number of tips to consider if you are about to start chemotherapy.

  1. Buy a digital thermometer as you will need this to monitor your temperature twice a day.
  2. Ask your GP for a full blood count, liver and kidney function and nutritional status re B12, iron, magnesium before starting treatment. Ask for a print out so you can use this to monitor any changes or deterioration. Request another set, once treatment is complete so you can address any deficiencies.
  3. Get as fit as you can prior to starting treatment. Staying active definitely helps to counteract side effects. If you have lost weight prior to diagnosis – try to gain a few pounds. This is incredibly hard but will help if you have a few days when you don’t fancy eating much. Complan or Meritene shakes (available online or from Boots) are good supplies to have in to boost your calories, vitamins and minerals.
  4. If you have any issues with constipation, ensure you get your bowels moving prior to treatment and drink plenty of water. OTC laxatives, prune or beetroot juice, dried mango, Vaseline and Anusol suppositories and Imodium in case of diarrhoea are all useful purchases.
  5. Hair is likely to fall out or thin so it is a good idea to acquire either a few chemo hats or a wig. You can get a free wig if you speak to Macmillan at your cancer centre.
  6. Buy either some latex free or sterile gloves – you will never know when these might come in.
  7. Warm gloves – you will need these to protect your hands.
  8. Google fasting and chemo in relation to reducing side effects. I tried fasting on cycle 1 and 2 but by cycle 3 I couldn’t be faffed and just ate what I felt like. I personally did not notice a massive difference but other people have reported benefits.
  9. Make sure you take 1-2 litres of water to the hospital and drink most of it. Apart from keeping your kidneys active to flush out the meds, it can be really hot on the chemo-suites and it is important to stay hydrated.
  10. Always have a bag packed with essential items, eg nightwear, underwear, towel and toiletries when undergoing treatment as you never know when you may need to be admitted for a raised temperature and it saves your loved ones the aggravation of packing for you.
  11. FLOT takes a minimum of 4 hours to infuse and with blood tests on top, you could be in the hospital 6 hours or more (my record was 9 hours). Make sure you have something to eat or something to do to pass the time. I took a book, an art pad, my journal and my phone with plenty of music and programmes downloaded. There was Wi-Fi in the chemo suite so remember to ask for the code as it probably changes each visit.
  12. I was told to live as much of a normal life as possible while receiving treatment. I did try to do this and went to all but two live concerts booked prior to diagnosis. When out in busy places I tended to cover my mouth with a scarf and put Vaseline on my nose and mouth in an attempt to trap any bugs. I don’t know if this works but anything is worth a try.

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.