中By the third and fourth weeks, I was really in the deep end of radiotherapy. Fortunately, the worsening of side effects slowed after I had begun traditional Chinese medicine (TCM) treatment in parallel. The most noticeable improvement was how the natural pink colour was restored in my abnormally pale gum. The radiographer that conducted my weekly reviews was a bit surprised how the trajectory of my side effects suddenly deviated from the expected, but I didn’t disclose the possible reasons. Having said that, radiation was still rampant across all tissues below my nose and above the Adam’s apple, obliterating everything in its path and causing huge disruption to my physiology. It was still a rather uncomfortable existence overall.
While at this deep end, all the way through the few weeks post-radiotherapy when the side effects would deteriorate and persist, my main daily mission was to survive. I mentioned previously how I had to constantly weigh the pros and cons of various strategies to manage the interconnected side effects. The tighter the grip from the side effects, the tougher the deliberations.
What did “survival mode” entail?
First and foremost was to ensure I took in enough calories and nutrients everyday. Even kids know that one needs a “balanced diet”. Isn’t feeding a human instinct? Well, yes, until one day you suddenly realised you just couldn’t eat. Why? Was it the pain that got in the way?
Pain was of course the persistent and prominent issue. Yet, concurrent to that were problems with my sense of taste, saliva secretion and the swallowing reflex.
For many weeks, everything that passed through my mouth tasted salty: honey, sugar, ice-cream, vegetables, plain water, green tea, the energy drinks on prescription...... they were all salty in exactly the same way.
Fortunately my sense of smell was preserved, otherwise I probably would have had trouble telling honey water from plain water.
In addition to losing the sense of taste, I also found many kinds of food super irritating. It’s not a surprise that spices, peppers, chillies and vinegar weren’t welcome, but also taken off my menu were many mildly acidic/sour foods, such as yoghurt, tomato, orange, apple, grape, and pear. The most intriguing of all were banana and aubergine —— somehow they were burning my mouth and I had absolutely no idea why. It would be some three months post-radiotherapy when I could tolerate them again.
Changes in saliva secretion was another annoying side effect. The patients’ booklets often refer to it as “dry mouth” —— if it’s that simple, as if one’s thirsty on a hot summer day! I wouldn’t describe my mouth as “dry”, because it wasn’t —— it was just full of the “wrong” kind of saliva. For the first time in my life, my saliva wasn’t watery at all but a thick, salty-tasting mucus, like glue or snot. Nothing I tried —— rinsing with solutions (some on prescription) and drinking water —— thinned or significantly reduced the secretions. Compounded by the loss of taste, pretty much all thick or pureed foods with high calories, such as soups, mashed potatoes, soft cheese, and even the supposedly life-saving ice-cream became really unappetising for their resemblance to the weird saliva. Chewing was also a struggle. Without watery saliva as a natural lubricant, I could chew all I liked, but the food just wouldn’t tumble in my mouth like clothes in a washing machine; instead, it would be piled up and stuck at one corner of my mouth, very often right on an open wound. How could one sum up all these with just “dry mouth”?
I sought some comfort in foods which tasted less weird, often very silky, moist and savoury per se. Examples of those include various flavourful broths tenderly prepared by my mother, steamed egg custard, soya milk, tofu and thin congee. To avoid surviving only on the few flavours of milkshake-like energy drinks from the hospital three times a day, I supplemented my diet with some “normal” solids —— vegetables, meat, fish, soup noodles, pasta, pastries, custard tarts, and so on. It was no easy feat, but I persevered.
How about swallowing? The pain from the inflamed throat was of course relentless, but even with that aside, I was battling with radiation damage to the muscles which control the swallowing reflex. I did try to keep up with some physiotherapy exercises to train those muscles at the beginning, but as the weeks went by the pain became overpowering and I had to stop. There were a few episodes where my muscles seemed “hesitant” on whether they should contract and which way the bolus should go —— the oesophagus or the trachea. I choked so badly and coughed like mad, which then caused further damage to my throat and made feeding even more miserable. It’s just a vicious cycle......
With my very restricted diet and patchy “meals”, I had to jot down everything I had eaten and their calorific values, then tot up the numbers at the end of the day: steamed egg custard —— 80 kcal; a 200ml glass of full-fat milk —— 170 kcal. For most days, I managed roughly 700 kcal, and would consider that a “job well done”. Thanks to this meticulous diary-keeping, to this day I still have a pretty good idea about the calorific values of various foods.
Why am I on and on about my radiotherapy diet? That’s because I love cooking and food, and radiotherapy robbed them from me, just like how it stole my absolute pitch.
The second focus for survival was to conserve whatever little physical energy I had for the recovery of my healthy cells battered on the “frontline”. Those days, my activities were all essential and minimal, such as getting out of the house into my father’s car, walking to and from between the car drop-off point and the radiotherapy department, getting dressed, and shifting between different rooms in the house. The rest of the time I was just sitting or lying down somewhere. My crawling walking speed and posture resembled an elderly person’s; fortunately no walking aid was needed. Blood circulation wasn’t great either with hardly any physical activities, so my extremities were often cold, no matter how many layers I put on. Fortunately my face wasn’t that pale to a point that worried people around me.
Dental hygiene was the third focus for survival. Remember those four wisdom teeth of mine? Basic dental care practices, such as brushing and rinsing, suddenly became an almost insurmountable challenge due to serious mucositis. The risk of tooth decay was high, partly because my teeth were no longer constantly “washed” by normal saliva, and partly because I could have eaten something really sweet (such as soya milk sweetened with tablespoons of sugar) without realising it. To fend off dental troubles, I had no choice but to press on with as much cleaning as possible. The energetic electric toothbrush was ditched pretty early on during the treatment regimen, but even with the softest bristles and smallest brush head, manual brushing never managed to dodge mucositis wounds and ulcers. I then remembered a tip shared by my dentist a few years ago when she was examining my wisdom teeth: sometimes it’s more effective to use one’s flexible and sensitive fingers than dental tools. And it did help! I much preferred that to the toothbrush poking around.
Right, here comes the final focus, and that was to confine all the troubles to the irradiated region and not let the side effects lead onto further health issues, such as muscular atrophy and gut bloating. Since I wasn’t bedridden, I did move around a bit in the house (which involved climbing the stairs) and did some gentle stretching. That was hardly “exercise”, but it was better than nothing, I guess. As for gut health, I was determined to have some fibre intake everyday, since the prescribed energy drinks, as convenient as they were, are formulated with everything from proteins to vitamins to minerals to oils and carbohydrates —— but fibre. So, it could be a tiny slice of fruit, or a small spoonful of vegetable, whatever remotely palatable and tolerable, I would take. Watercress, mushrooms, carrots, courgettes and tinned peaches in syrup frequently appeared on my menu. Barring the last two days of radiotherapy when I really couldn’t eat any solids, I stuck to my disciplined plan. Thank goodness it paid off!
All this happened under my parents’ close watch. Like how I was always absent from the table at dinner time. They never looked too worried or said they were, but how could they not be? Yet, they never gave unsolicited advice, fussed over anything or said anything demoralising, just cooperated and let me have my way.
I am privileged to survive on the love of those who care about me most. Everything else just fell into place nicely.