- Meet Consumers/Patients
|Food, Food, Glorious Food|
Food, Food, Glorious Food: Blending Whole Meals
I am obsessed with food, because I can’t eat anymore. Not an apple, a raisin, a piece of toast, a bowl of cereal, or anything. I can’t even drink a glass of water, or suck a cough lolly. The only thing my mouth is good for is talking.
I think about food practically all day long—sometimes even before I get out of bed in the morning. What will I have for breakfast today? Rolled oats? Buckwheat? Or barley flakes? Quinoa? What a dilemma.
At the moment, rolled oats are on the breakfast menu as they are deliciously soft to blend, and then push/puff down my feeding tube with the aid of a special bulb syringe (bought in a carton of fifty). My husband cooks half a cup of rolled oats, or buckwheat, in a wide-necked thermos flask filled with boiling water. This makes approximately 600 mL of cooked porridge, which is added to the blender jar.
To this I add a spoonful of white chia seed, ground or fresh ginger, caraway seed, cinnamon, and ground cloves. Sometimes I add half a teaspoon of beetroot powder, and this makes magic. Beautiful pinkish coloured porridge! Glorious! Or, I might add a spoonful of spirulina powder and make a green breakfast instead of pink.
My porridge concoction is a thick, gluey consistency, so it has to be watered down quite dramatically so it will go down my narrow feeding tube. It’s just as well I always "eat” over the sink, as there is usually a lot of mess. Sometimes, quite often in fact, there’s a mess on the floor, or up the wall. Or, worse still, on the vertical blinds. That is a disaster! When that happens, I really get cranky for wasting my breakfast, lunch, or dinner.
Lunch is usually a salad with avocado, and other salad ingredients. Dinner is some more avocado, this time blended with fresh fruit.Challenges
I’m not easy to feed, although people seem to think it’s really easy. And I can’t go out for lunch, for coffee, or to dinner any more. Well, I could go and sit there and watch the other people eating and drinking, but it’s no fun. And I feel very self-conscious just sitting there staring at all the mountains of food on other people’s plates. It’s even worse listening to them talk about their delicious meals, and/or recipes.
Celebrations, like Christmas or birthdays, are still very difficult for me to cope with, even though it has been more than twenty-five years since I had a twelve-hour operation to remove a brain stem tumour (which left me with many damaged nerves; my swallowing reflex had disappeared as well).
I must admit that at times it would be much easier to open a tin of formula, but I’ve tried that several times and none of it has agreed with me. My weight dropped alarmingly back in 1988. I lost more than twenty kilos in just a couple of months (while I still had a nasogastric tube, and formula for food). I looked anorexic at 36 kgs. My feet even lost their padding, and as a result all my shoes fell off. None of my regular clothes fit the new skinny me either, so I had to buy a new wardrobe of kid’s sized clothes, even knickers.
About August 1988 the nasogastric tube was removed, and a PEG was inserted into my belly. It was a vast improvement, but formula still wasn’t suitable for me with all my allergies. What were we to do? Use normal food?
The dietitians (seven in all) said I couldn’t/wouldn’t survive if we went down this path, but we had to try, and try we did. My husband, Ken, was scared that I wouldn’t be around by Christmas that year if I continued "eating” the latest pre-digested formula recommended by the current dietitian.
With Ken’s help and continual support, we’ve persisted with "ordinary food” ever since, and the best appliance in the house is my trusty blender (of which there have been many over the years). My husband bought a generator, and also an inverter so we have backup power when there is a power outage, so at least I can blend up my meals.
My grandchildren are used to the "funny way” I eat as they have never known me any other way, but I was known as "Magic Nan” by my step-grandchildren. They were quite fascinated by my odd way of eating when they first met me. I had a very interested audience at every meal and it took them a long time to get used to funny old Nan with the tricky tummy. My daughter-in-law even wanted me to be an exhibit at the child care centre where she worked, but I couldn’t go and "display such offensive behaviour” in case someone complained (again).
(Once, in a medical building café in Melbourne, Australia, a man had told me to leave due to my "offensive” behaviour. All he cared about was his regular "munching” type of customers, and he didn’t want any of them walking out of his eatery because they’d been offended by this peculiar person with her shirt pulled up [a little bit], and holding onto a large thick syringe. He didn’t/couldn’t cope with anyone who was a bit different.)
My new specialist was amazed that I’d eaten only blended food ever since August 1988. He asked me lots of questions, and at the end of the consultation encouraged me to keep blending. What a buzz! He didn’t attempt to convert me to using formula, as so many medicos have in the past. He really made my day.
Ever since, I’ve had the urge to make (and eat, despite so many no-nos) zucchini pie. I will just have to make it for my husband, and watch him eat it.
Robyn lives in Queensland, Australia. She hasn’t been able to swallow since she had a brain tumor removed in 1988—since June 22, 1988, to be precise. Ken, her husband of forty plus years, "has been very supportive regarding my wish to have blended foods,” she writes. "If he hadn’t been, I wouldn’t have dared.”
LifelineLetter, May/June 2015
3/2/2017Riding the Tube
2/9/2017Mums team up for "tubie" support