This time last year we were at Weston enjoying our Indian Summer!
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Saturday 5th October 2019
Today has been the worst day so far. It is really hard to swallow and my lips are cracked and sore. It stings when I try to take my dissolved pain killers so right now I’m only taking OraMorph as it is only 5ml – even that is hard but it does help. My mouth seems sticky as well – I’m hoping this is my peek and it gets better from now on.
I did sleep a lot today which definitely helped. I do keep trying to have a sip of water – it is better having it cold.
Sunday 6th October 2019
I must say I have woken up feeling a bit better – it is still difficult to take my normal medication (pills crushed up and mixed in a teaspoon of yoghurt) I’m trying really hard to get it all down – it’s the only food I’m eating at the moment.
I have slept a lot today but I’m really struggling to get anything down my throat even water. I don’t think the food replacement drinks would work – it’s not that I don’t want them it’s that I can’t get them down.
I’m starting to really worry and I know Nigel is too but what can I do. How do I make it better?
Monday 7th October 2019
Today hasn’t been any better – I still can’t get much down – so it’s just 5ml of OraMorph and little sips of water. It takes so long to get even that down. It is constantly painful in my throat apart from a short while after the Morphine kicks in.
I stayed up in my chair tonight as I find it easier than lying down.
Tuesday 8th October 2019
I had a fretful night – my mouth kept getting sticky which caused me to dribble so I would have to clean it up. I did get a few hours’ sleep in the early morning.
Then I was up taking OraMorph and a small amount of water with ice then my tablets with yoghurt.
Shower this morning and I opted for a strappy top so it wouldn’t rub on my wound. The dressing Carol gave us last week does help it calm down so its not sore or messy. They are one use only so I will need some more today.
Slimming World day – now you may wonder why I want to go with the way I’m feeling. It’s just that I have been a member for over two year now and it’s more of a social support group (almost family) where I have made a lot of good friends. Weigh in was a bit of a shock though – I knew I would have lost some weight but 13½ lbs in a week is scary. I had even worn jeans instead of my usual leggings.
Back home so Nigel could have a quick sandwich and me some more Morphine – then off to the hospital for my first follow-up appointment.
A few minutes wait and then a bit of a shock when the young nurse who collected us from the waiting room ushered us into a room. Not my Doctor and one of the nurses I had met which was what I was expecting but a group of six women. Laura and Fiona (two of the neck nurse’s) Sophie (dietitian) and Henrietta (swallowing nurse) plus another nurse as well as the young one who showed us in. I felt a bit ganged up on.
Well they soon worked out I wasn’t so good and there was a problem. Laura, sitting behind me, came out with “Should we keep her in?” I told them that wasn’t an option. I get better care at home – give us what we need and we will do the rest.
They did my Obs which proved to be all good and then sent us off for a blood test – I think so they could formulate a plan.
When we returned Fiona said they didn’t want to keep me in, that they would give me additional pain relief in the form of a Fentanyl patch (works like nicotine ones – through the skin) as well as upping the recommended dose of Morphine. This should make swallowing less painful.
They also gave me some protein drinks and more dressings.
We left the hospital after three hours but at least there was now a plan.
Wednesday 9th October 2019
Laura phone early this morning saying my blood test showed no problems except de-hydration and to carry on with the plan.
Despite a slow start – it was still hard to swallow any water – after a couple of OraMorph’s at about 1.00pm I could suck on some ice chips and a couple of ice pops. Allowing them to melt on my tongue and then swallowing.
Been very sleepy today but when I am awake I keep looking at the lovely flowers Nigel bought me yesterday – they are bright and cheer me up no end. He is so thoughtful (especially when I give him big hints).
Today has gone along well – I have been sucking on ice chips and the ice pops are good to suck on now. I even had two tablespoons of custard with my crushed tablets and it all went down well. I have taken more OraMorph and am not in so much pain. I must have got through three glasses of water today – if this continues tomorrow should be even better.
My skin is itching a lot (all over) – may be a side effect of the drugs.
Thursday 10th October 2019
It is amazing what difference a day makes – yesterday I was doing OK but today is even better. I’m now sipping lovely cold water (even though it tastes like sea water). I’m looking for something to flavour it – tried orange squash, Ribena etc. I even tried the hospital drinks but I didn’t like the Apricot one at all.
I had two spoons of custard to take my tablets early on but had more mid-afternoon just because I fancied it – what a step forward. An hour or so later I did feel a bit sick so I didn’t have any for tea. I did take my evening pills with some though.
The itching is driving me mad. Scratching too much – but I just can’t stop.
Friday 11th October 2019
I did sleep well again last night – but then I’m always feeling tired and dropping off most of the day.
I have been trying lots of different drinks to see what tastes OK – nothing has so far.
Nigel has been keeping my wound clean for me – he is so good. I keep the dressing on for a while longer now as it helps to clean up the edges – but it is still very wet and messy.
I’m drinking more of the ice and water than I have been doing.
The evening went well but I’m so sleepy all the time and couldn’t stop scratching my itchy skin with shaking hands now – they seem to have a mind of their own now.
Recovery isn’t going as quickly as I had hoped so you will be getting weekly Blogs until things are better – you have been with me so far and I have appreciated your support.