House Keeping: This is a repeat performance without the PEG tube lesson (see previous post / email) I have repeated this because what’s important is the story that often goes with PEG tube feeding - see below, and why having a reason and motivation to transition is so, so important.
The image below sums up my motivation to transition off my PEG tube.
This is a new through hike I am exploring and I mention it here as it was and is the one joy in my life that keeps me eating orally. I learn food confidence, get off my merry go round of narrative fallacy and focus on something else other than my inability to swallow.
I missed out on dinner with close friends last night simply because I did not have the bandwidth to eat in public - yep, it still happens to me even in close and personal relations.
I know many of you reading here are not HNC patients or recipients of treatment.
I created these PEG tube videos because I knew at some point they would help someone else with their journey.
I had no idea what to do nor how to live with my PEG tube.
Small things like tucking it in my bra, what to do when the end broke off and was told and I quote “that’s because you are using it too much” …
I mean really? - I’ll omit the expletive I used after I left the clinic.
Do you think they were joking? No - they were not, and it wasn’t until I threatened to go to the local hardware and replace the plug myself did someone actually go an do something about it.
Monty Python indeed.
“Tis but a scratch!”
“No it isn’t!, I have had worse”
Except of course I hadn’t, and the comedy continued.
My point is - if you are going through this now, or about to - there’s a lot you have to learn.
Ask questions.
How, why and what if - unless someone is a specialist in tube feeding, tube care or is the Black Knight of PEG tube feeding, there’s a high chance they don’t know.
In Monty Python and the Holy Grail, that “’Tis but a scratch!” scene happens when King Arthur encounters the Black Knight, a lone, overconfident guard blocking a bridge. Arthur defeats him easily, slicing off one limb after another, but the Knight refuses to admit defeat. Even with no arms or legs left, he’s still yelling, “Come back here and take what’s coming to you! I’ll bite your legs off!” - that sounds pretty much how I managed this whole PEG process.
The whole bit is a brilliant parody of blind heroism, macho pride, and British stoicism, that absurd determination to “keep calm and carry on” long past the point of reason.
So when someone says “’Tis but a scratch,” it’s become shorthand for downplaying something serious often as dark humour, or as a badge of stubborn resilience.
Sounds like me.
P.s if you want to watch my presentation in its entirely you can do that here
Eat Well. x
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