My diet wasn’t the worst in the world, but it wasn’t the best either. My parents weren’t much for cooking, and dinner was usually meat and three veg - mashed potatoes and peas and beans with any semblance of nutritional value or flavour boiled away. In addition, I always remember a bottle of coca-cola in the fridge, and ice cream in the freezer.
Growing up, I learned to cook a little, but I was never very good with vegetables, and takeaways was always an easier option. My wife is a vegan, and this opened up the variety of my diet some more, but again, there was always an easier option, and my weight tended to fluctuate.
Early 2015 I noticed pain in my abdomen, and I had regular diarrhoea. After a few visits to my GP, I was eventually referred to a Gastroenterologist. I was booked in for a Gastroscopy and Colonoscopy, and this was when they found I had a cancerous tumour in my stomach.
I was scheduled for 3 lots of 3 week rounds of chemotherapy, and introduced to the nutritionists at Peter MacCallum Cancer Institute. The nutritionists’ biggest concern was that I maintain or even gain weight during the treatment, so they recommended food that was calorie dense. Fatty and sugary meals were the go - there were even people bringing around tim-tams during chemotherapy sessions! Due to the nausea and loss of appetite caused by the chemo they suggested I eat anything that I craved. I craved pizza and burgers. I ate a lot of “bad” food. My weight went from 84kg to 91kg. For some strange reason, it’s easy to let your diet run wild when you have a medical professional telling you it’s OK.
On the 26th of October 2015, I my stomach was removed in a total gastrectomy. Due to the fact that the tumour was close to the top of my stomach, part of my esophagus was also removed, and the esophagus had to be mobilised downwards so it could be attached to my small intestine. For this reason, the surgery could not be done via “keyhole” surgery. This meant a more invasive procedure and longer recovery time. In addition, it was discovered that the tumour was pressed against the front of the diaphragm, so a small piece of my diaphragm was removed. There were other complications as a result of this, but that’s a whole other story!
The first 3 days post surgery were nil by mouth, while the join between my esophagus and small intestine healed. I was watched by a nurse while I had my first sip of water post surgery - they had to be sure that there was no leakage. Water has never tasted so good! For the next couple of days my diet consisted of water, tea, apple juice and broth.
After the surgeons were happy with my progress, I then levelled up to the puree stage. This was the hardest part by far. Pureed lamb casserole is a crime against humanity, even if it is artfully presented on a plate. At this stage a typical breakfast would be a small serving of runny porridge, yoghurt and some juice. Lunch was soup and then some sort of puree for dinner, followed by ice cream for dessert. This was supplemented by high protein (and milk based) products such as Ensure or Sustagen between meals.
At this point it’s probably worth talking about bowel movements. Every day after the operation, the surgeon would ask “Have you made wind?” To which I would reply “No”. After a week or so the surgeon seemed to be a little concerned. Happily, a couple of days later I did produce gas, a fact I was very proud of. The nurse I mentioned it to was not so impressed. This time when the surgeon asked “Have you made wind?”
“Yes!” I happily replied,
“Oh,” he responded, “Have you made a motion yet?”
“No”, I answered, deflated.
All in all it was 11 days until I was able to pass anything solid.
After the puree stage comes “soft foods”. A typical day for me would consist of porridge or soft cereal for breakfast, some sort of smoothie for morning tea, 2 scrambled eggs (no toast) for lunch, smoothie or soft fruit for afternoon tea, and a small serve of mashed vegetables, and possibly some soft meat (or broth) for dinner, followed again by ice cream. If anything, this stage can be a little boring as you soon get tired of eating food of the same texture over and over. I tended to push things a little bit, and experimented with different foods, with varying results.
A couple of weeks later the body has learned how to adapt to food entering the body, and the diet is closer to a normal diet, albeit with smaller meals, and more in between snacks. There are some foods I still struggle with however - raw vegetables are hard to digest (baby spinach seems ok, but raw carrot is definitely out), apples can be too tough, and I don’t think I’ll ever be eating steak again.
There are other things I need to be wary of, such as “dumping syndrome”. Dumping syndrome is when food moves too quickly into your small intestine, and it can be triggered by refined sugars, excessively fatty foods, or even just eating too quickly. The symptoms include nausea, abdominal discomfort, dizziness, and shortness of breath. In short, it’s not too pleasant.
Another problem is overeating. Most people without stomachs don’t feel hunger. I’m the opposite - I will feel hungry even after I’m full, and often tend to eat until I’m quite uncomfortable. This can sometimes lead to vomiting. I often have to remind myself to slow down my eating - especially if the food is delicious.
Some nutrients such as Vitamin B12 are only absorbed through the stomach. For this I take a under the tongue spray once or twice a day. Iron is not so easily absorbed by my system, so for iron I take a daily dose of Floradix. Calcium is another issue, and I’m still working on that one!
I have a good friend who is a naturopath and who gave me lots of good information, especially around supplementation - I take Magnesium, Vitamin C and Vitamin A daily. She also suggested I go gluten free, which I was resistant to at first, but eventually came to realise that bread does not sit well in my system.
I was able to adapt to my new diet quite well, but I still had issues - the diet mandated by the hospital dieticians is calorie dense, with an emphasis on fatty food, and a lot of dairy. Not much emphasis is placed on getting a well balanced diet - I was even told I should consider eating ice cream twice a day! They also recommend supplementing your diet with vitamins as opposed to eating whole foods. It was around this time I attended a Gawler Foundation Cancer Retreat.
The Gawler Foundation (http://gawler.org/) advocate a plant based diet, vegetable juicing and daily meditation, rounded out with coffee enemas for the more adventurous. I found the retreat to be an extremely moving experience, especially after meeting some of the other attendees, many of whom were on their second or third cancer experience, and some who had terminal diagnoses. The diet they advocate at Gawler is low sodium, high potassium, low fat but high in omega 3 and low in omega 6, no caffeine (orally), no sugar, no processed foods and no saturated fats. As you can see this diet isn’t for the faint of heart, and there is probably some debate as to it’s benefits. There do seem to be people that have thrived for years living this way, even after a terminal prognosis.
I deeply enjoyed the experience of the retreat, and it instilled in me a daily meditation practice, but diet wise I don’t think it was quite there for me. In fact I was down about 2kg a week after the retreat. I take weight loss very seriously, as it’s nearly impossible for me to put it back on. In all I have gone from 91kg just before surgery to around 70kg now. Myself and my tastebuds decided that we needed a better solution.
I did change my diet in some ways after the retreat - I reduced my salt intake dramatically, and started eating sauerkraut. I’ve cut out dairy (It doesn’t really agree with me anyway). Instead of butter or margarine I use flaxseed oil. I feel it’s in my best interest to get a decent amount of protein and fat in my diet, but I mainly eat fish for meat, and I try to get protein from vegetable sources as well, such as beans, chickpeas, lentils and quinoa. I also try to get lots of healthy fats from avocado’s, coconut oil and flaxseed oil.
The following is an example of a day of food for me. I’m not suggesting it’s the best diet, or for everyone, but I feel generally well nourished and I don’t tend to overeat or feel unwell after meals. It’s the best I have been able to put together after the often conflicting advice I have received from many well meaning people, and it’s many miles away from what I used to eat.
Porridge - Oats and Quinoa, with honey, grated apple, flax seed oil, and a little soy milk Coffee
Smoothie - Bananas, mango cheeks, berries, kiwifruit, coconut water, spinach leaves, raw cacao powder, probiotic powder, sun warrior protein powder, hemp seeds, and a dash of flax seed oil.
Avocado and cannellini bean salad (with coriander, spring onion, lemon juice and flax seed oil) on gluten free bread with a poached egg, a little (wild caught) tuna, and sauerkraut.
More smoothie, or a couple of bliss ball (nuts, dates, shredded coconut, coconut oil, cacao, chia seeds)
Red lentil dahl with brown rice, a small serving of baked fish, and sauerkraut.
If I’m very lucky I’ll have a chocolate chia seed pudding.