Who would have thought it – i certainly didn’t – its seemed forever away in the beginning… but I’m there – although i cannot take all the credit – i have had a lot of help.
I did have some bad news this week thou, friday i has the speech and language therapist (SALT) show up … she asked how eating and drinking was going – I said eating had pretty much stopped as i couldn’t taste and it hurt too much so not even eating for taste anymore, and drinking was ok, apart from the choking! RED FLAG to the SALT — I will be right back she says and off she goes – comes back with cups a jelly a yoghurt and a spoon. I am going to do a swallowing assessment she says … she says she will spoon in water and i am to swallow and she will have her hand gently on my throat to check the mechanism of my swallow. Sounds ok to me except o bloody choke about half of the time … i ask to do it a different way, but by then i am tired so choke more. she then goes and gets some thickener. now rightly or wrongly (due to personal experience) i associate this with very sick people. She goes ahead and shows me how it thickens the water and i try it and yes i didnt choke but, I WILL NOT BE USING IT not how not never… its like wallpaper paste its horrible the texture is just awful. Anyways out of this I am officially diagnosed with an unsafe swallow and am advised not to even try food and not to drink unless it’s thickened !! oh and if i do i am at high risk of chest infections etc !!! Now is it me or is that a bit shit !
Saturday i had a catch up radiotherapy (i missed 2 last week) and then i slept till sunday lol – the tiredness is killing me slowly.
Today I had radio then dr’s he was asking about my sickness and those of you on my Facebook page will know that i had had 2 days of not being sick (yes past tense). he advised cutting out one of the drugs – and i have felt nausea most of the afternoon – i am hoping its a fluke and we shall see what the morning brings – but i do have a bowl ready ! – what a sexy life i lead – its practically sex and the city lol. Other than that he is happy – then SALT and Nutritionist – 2 people who i used to fear – in a im gonna get told off by teacher sort of way .. so i sit down – we work out im having 1000 -1500 kal a day on a good day and sometimes as low as 800. which even i know isnt great but turns out i am maintaining my weight so she lost that fight although 500mls of water in a day BAD SHOW had to agree on that one.. then SALT she asked if i had used the thickener – I said no and that mentally i wasnt there – that it didn’t seem right ! which is true it really doesnt and I don’t think i will be using it any time soon.
Pain.. Ive been in quite a lot of pain this week my back, neck and mouth/throat… so I have had to take oramorph a fair few times on top of my normal medication. but i guess that why i have it, to take when needed.
I guess i am feeling defiant atm – very much – you say i cant do something so i will – i will prove you wrong, If i am 100% honest it probably stems from fear but i am soooooo not there yet – for now i will happily choke on water and feel crappy each time !