Breaking up with your favourite food.
Breaking up with your favourite food.
Transitioning back to oral feeding.
I sat alone at the breakfast bench with the ticking clock the only sound to draw my attention. The mindless process of syringing a liquid life force slowly into a plastic tube hanging out of my abdomen. I sat in moot silence trying to work out how I got here. Oh the loneliness, the indignity, the utter shame and humiliation. How was it that these feelings overrode the actual process of living?
What did I do to deserve this. Was it something I did, something I didn’t do. It had been 15 months and I had not used my kitchen for anything, not even boiling the kettle for tea or coffee.
I felt like an alien, It was soul destroying for me as a foodie, a party girl a very social person who loved a wine, a laugh and a good feed of slow cooked anything with crusty bread and butter. This foreign object attached to my body that kept me alive but also drained the last remnant of dignity, hope and life as I knew it.
I summoned everything I had, my reality despite my earlier bravado was that I was scared. What if I failed to eat without ‘It’ what if I never went back to eating orally again. Not once during the whole cancer treatment did I ever accept that PEG tube, not once, not ever, and it was certainly not part of any mental plan to be living my future best food life.
Every waking moment was spent strategising as to how I was going to eat like I use to. Despite radiated fibroids, loss of tongue, little swallowing ability, I plotted, planned and wrote everything down that was happening to me and what I had learnt, what I implemented and how it went, day by agonising day.
The reality that I was breaking up with my first love, the love of cooking, eating and sharing food did not escape me. It disappeared over the horizon, leaving me with a picnic rug scattered with syringes, small plastic bottles, napkins and pain killers. Leaving me to pick up the pieces and find my way back to living with others without it, its social lubricant and its ever presence in our lives of socialising and community living. How was I ever going to live without it? I knew nothing else, I had been in love with it since I was a babe in arms, I nurtured it, studied it and watched artisans make their living from it.
I was bereft.
To add insult to injury was the loss of taste, everything had the taste of wet cardboard or a badly seasoned dish, which made motivation even harder to conjure. I stayed focused, I kept to course and never lost sight of the end goal. I read, researched, and tried everything. There was little to guide me sans others who had been through and were going through the same food experience. I found no one with the dogged determination and persistence to cook & eat again like I was experiencing internally.
I am sure they were out there, just not as vocal or showy as me. I know there are the silent brave and strong tubers amongst us, as it turned out I wasn’t prepared to be one of them, I could have easily slipped through the cracks, just given up and not fought to find my place amongst the eaters and lovers of food again.
Transitioning back to real food meant so much to me, in my mind it was a milestone, it represented that I had beaten cancer, I had beaten this horrific and brutal treatment and had won a small victory. Eating orally represented the fact I had won the battle. Whether that was true or not was yet to be seen, but I wasn’t going to die not trying. I mustered strength I didn’t know I had, tenacity and plunged into the dangerous game of russian roulette eating again.
Dipping my toe into the murky world of dysphagia, no one could tell me what I was going to experience, what I had to do to make this as good as it could be, swallow techniques were the least of my problems, it was fear, it was fear I needed help with, I needed motivation, I needed a coach who stood on the side line and yelled instruction to me whilst I jacked my mouth open with a stack of wooden sticks, choked, coughed and spluttered through experimentation with foods I was told not to eat. A coach to tell me to go out publicly and eat with friends and family. A coach to tell me to get up and do it again and again and again. Don’t give up, don’t sink to the depths of despair, you don’t have the luxury of time before you lose your swallow forever.
Swallow, practice, swallow and keep doing it until you are so fatigued trying to eat something solid, something small and chewy of which remnants would be found days later. I became my own food love coach, I researched, strategised and experimented. I was bold, I was fearless and set myself food love tests.
I would conjure up a food scenario and then test my ability as to how I was going to manage that situation. What dictated success? How was I going to celebrate the milestone when I succeeded? Not if I succeeded.
These food love tests became my process to eating solid food again. If I wanted to regain some semblance of my old life back I had to do these tests. They became my bridge to repairing my food heart break, finding a new food love that I could live with for the rest of my life. It’s a slow process that changes weekly, monthly and even according to weather patterns, but it is a new food love life to which I now embrace.