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Update 2017 – still battling on


HAPPY NEW YEAR EVERYONE Well here we are almost at the 4 year mark and we all thought it would be way behind us and we would have moved on with life but unfortunately not!   Here's what going on - we are now living near Aylesbury Buckinghamshire (sounds posh doesn't it ). The kids… Continue reading Update 2017 – still battling on

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Summer Holidays


Well its 2 weeks since we started our 'plan' of night feeds etc, it's going ok as long as I'm taking my anti sickness, so could be worse. I've not managed much in the way of mls, and 1ml is 1 calorie, here's an example of a few days feed, 450mls 600 mls 320mls and… Continue reading Summer Holidays

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We have a plan….


Well the start of a plan. Since my last post I stopped eating due to the pain, so when I went to the doctors he made some phone calls and was clearly very persuasive as I had my dietitian on the phone before I had even left the doctors, well nearly, I had a voice… Continue reading We have a plan….

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1 year post radiotherapy and struggling


I'm at my wit's end, I'm almost 12 months post radiotherapy and 14 most post surgery (half tongue removed and reconstructed with free flap forearm). I keep having blips, here's a few: - Auto immune reaction in mouth causing extensive ulceration. - Sickness returning on and off - I STILL  have my peg - My… Continue reading 1 year post radiotherapy and struggling

Health, My Life, Scars and Recovery

Thursday. ..to Friday


So G came in early today to bring in some clothes and feed, oh and to see me. Unfortunately I was green around gills having had a 'orrible night. The ward was really busy this morning so I hadn't had my anti sickness tablets. So poor G ended up passing me bowls. But saying that… Continue reading Thursday. ..to Friday