At a time when I should have been eating I wasn’t. I had dropped to my lowest weight just above 50kgs. It was following head and neck cancer surgery, removal of a tumour, both tonsils, 1/3rd of my tongue, 30 lymph nodes, 30 rounds of radiotherapy and 6 weeks of chemotherapy. Eating was the last thing on my mind.
Once upon a time it would have been the only thing on my mind.
A seed I had planted in my mind when I was still recovering in hospital (November 2018) started to germinate. I found it very hard to navigate the eating process after this treatment was over and the healing journey had begun. Added to the amount of road blocks I hit with Osteoradionecrosis, pharyngeal weakness with poor propulsion (ie swallow), flesh pulling from jaw, losing weight had never been easier. That, and all alcohol tasted like lighter fluid.
I had been advised to have a PEG inserted soon after my surgery and before the radiotherapy and chemotherapy treatment started. I don’t know how or why this was decided for me but in hindsight it was the right decision. Turns out that PEG saved my life and it became a vital appendage for 15 months until finally, it fell out of its own accord.
So now that it was gone I had to fend for myself and I did not know it, but the real battle was about to start. I can cook and I can cook well, I know a fair amount about nutrition and I am well read on what to eat and I also got hold of an excellent Naturopath who worked with me to sort out my blood and immune system.
The seed was a recipe book (it’s being written as we speak) but it’s grown even more now, that fledgling idea.
What would you think if I could help you transition from PEG to mouth with food? When they tell you to eat more protein , higher calories what does that look like? What happens when you get sick of ice cream? Yes, it does happen!
What if there was one place you could go to get food ideas, recipes, shopping lists, tips, tricks to make that all important step toward eating real food again?
What if there were steps simply laid out to guide you. Lists of items you would need to help in your transition? What if we could cut through the clutter? Direct access to the best information, support services and forum groups with others that can and have shared your journey?
What if together we had a plan to work towards getting that PEG removed? Suggested lists for grocery purchases at all stages of the healing process. From starting out to full transition. Inspiration and support to try new and different foods.
Providing you with the tools to take charge of your own nutrition. Supporting your caregiver by providing ideas to help them help you? Teaching you how to make basic, nutritious meals that form the back bone of your new feeding journey.
A basic understanding of nutrition will arm you with the confidence to experiment, explore and forage the markets, your local grocer and grow some of your own produce.
Food rituals for me include the planning, purchasing and preparing of food. These simple steps path the way for improved taste, texture and swallow by focusing on all the senses and not just the swallow. Whether you are eating solo or with a caregiver, family or all of the above.
The Food Manifesto is just that, manifesting ideas and insights into helping people with dysphagia as a result of head and neck cancer. Providing inspiration instead of dread. Eating real food and tackling the mechanics of swallow and chew one meal at a time.
Let me know if that’s something you’d be keen to hear more about, because I am super keen to get a community together to help them with their food journey after HNC.
Please drop a comment below or come join me on Facebook at The Food Manifesto … I am keeping a log of all the feedback and stories. Get in touch so you can help me and be involved, I’d love to hear from you no matter where you are in the world.