I feel more human today… And more with it, and between us, I’ve been to the loo too which means unless something major happens home tomorrow….. I’ve been fully Peg fed throughout all this and that’s been going great.
Ive had visits from speech and language therapy, this was where I insisted on practicing how to say my Kids names – (this was the first time I wished I chosen name like bill and ben – it would have been much to say} –The team were awesome and were so patient – I broke down in tears a dozen times when I couldn’t say their names – ironically I could say fuck! In anger and frustration —I mean I could be understood mostly, sort of! My speech is very laboured, and we’ll not like “normal” speech but at least I could speak.
We had some sessions where I had to see if I could swallow – the simplest thing – the most automatic thing that we all take me for granted. So let say you put some thick soup ½ a teaspoon in your mouth BUT you can’t move your tongue or trigger the swallow reflex (to mimic this stick your tongue out bite your tongue and try and swallow – that will give you an idea of what I mean).
I couldn’t move the soup, I tried tilting my head back but started coughing and spluttering over and over and over – we tried water then thickened water = different techniques to protect my airway and nothing worked. And I still sounded like crap! This was the first time I realised my new future- I would have a new normal – and I had to say goodbye to the old me!
The pain in my mouth and tongue had surprised me in that it’s not too bad at all = manageable with pain relief, its just pressure from all the swelling…my neck and jaw pain is terrible it’s still extremely swollen, and stiff – I could only open my jaw about 6to 8 mm which wasn’t even enough for a tooth brush but I had to try and stretch it 5 times a day – I was like torture … The graft site, which at the last minute the changed to my forearm, was in terrible pain and unrelenting it radiates down my fingers and all the way up to …I tried to keep it elevated which was meant to help- it didn’t !
But I’m doing ok. Possibly home for tomorrow for a long road of recovery – I’m extremely weak – even getting up moving 4 meters to the toilet and back to bed and I’m exhausted for the rest of the day – and when I say exhausted I mean deeply asleep until I need pain relief.
Just seen one of doctors looks like facial drop may be permanent…… That one hurts….. I’m in bits right now bit I will like I always plod on through
Still smiling a wonky smile