For me, a big part of “getting over” my cancer was getting my PEG tube removed. In the end it took 14 months and it fell out of its own accord, in an Ambulance on the way to hospital. I asked that they didn’t try and put it back. I felt within myself it was time to stop using it.
However, before I got to that point I had to research and experiment with smoothies and real food before I could transition back to oral feeding. So here’s the thing, I could not wait to get off the “commercially prepared liquid enteral nutrition formulas” also known as “artificial food”. Yes, that is a mouthful and the more research I did the more I realised I had to get back on to real food before I could start to heal and feel better.
I will preface this next section by saying I am eternally grateful for my surgeon suggesting I have a PEG put in. If I had not done so it is pretty unlikely I would be here writing this today. Secondly to the manufacturers of “commercially prepared liquid enteral nutrition formulas” – thankyou, for without your “artificial food” I also would not be here to write this.
About 3- 4 months into PEG feeding I started to really miss the social aspect of food and eating. I was also missing cups of tea and all those beautiful moments you take for granted with food. I took a long time to heal and with all the ups and downs I started to research a passion of mine and that was food as medicine, which was the whole and soul of my business The Food Manifesto. It took four years to realise my business names’ purpose.
I have had bouts of feeling very sorry for myself. Being single and living alone during a time when you want help, you need help, you crave support and acts of kindness. I have friends who provided this in spades. There were times however, like 3.30am, when lying on the bathroom floor, passed out from exhaustion, or vomiting I felt very alone. It frightened me more than anything, I had to get my head right, I had to fight and fight for every breath, step and new day. Every morning I’d get up, exercise, shower and dress. Every day I’d go to my “office” (aka second bedroom) and turn on the laptop and work at one of the three tasks I had set myself. Every day, I would stretch my neck and shoulders, massage my scars, stretch open my ever tightening mouth opening, stacking in wooden paddle sticks to stretch beyond and wait with tears streaming down my face. Every day I would administer medication, every day I would religiously clean my PEG, clean the bench surfaces, wash syringes and re stock the formulas for the next day. Every day for 12 months – every single day.
Dressing with a PEG – I had a very short tube lead on my PEG. I also kept breaking the sealing mechanism through use, and regularly had to go back to the hospital to get another one cut off a new rig and use that to plug my tube feeder. For a long time I use to poke the end of the PEG into my underwear, eventually my sister pointed out that I could tuck it up in my bra. Much easier and less drag. I found it hard to exercise with a PEG. You can walk but I wanted to run, I wanted to swim, do yoga (hot yoga) and I could not do any of those things. I tried taping it up against my stomach with some degree of success. I tried a maternity belt to keep it in place but they were all too large, or I was too small. I tried holding it when I ran, I made sure I never got it hooked on anything and always was aware of its existence.
Extract from my forthcoming book : “Easy Follow Easy Swallow”
The Fortisip formulas were a bit of a mystery to me. It was very difficult to find out what was actually in them (and I wanted to know exactly what was in them given I was squirting at least 6 of them a day into my PEG feed for over 12 months.) I knew there was a lot of sugar and I knew that unless, despite how much it hurt, I weaned off them and started on “real” food I was only delaying and possibly harming any progress I could make.
The day I dropped some formula on the kitchen floor, the cat licked some of it up, the rest set like concrete and I wondered “what on earth is in this stuff?”. That’s when I decided, I can’t keep going on like this, my bowels were shot, my skin was blotchy and I had no way to be social with anyone whilst PEG feeding and so I started the very long journey back to real food.