Woke up feeling terrible. Sick. Just ill feeling. Real hard to get out of bed. When I did I was very wobbly. I discovered I wasn’t in control of my hands and fingers so I did the test on myself that I learnt while as an inpatient in the John Radcliffe hospital back in November. The JR is a teaching hospital and I had many many student doctors examining me as i’m quite an ‘interesting case’. They all did the same tests on me which are typical to liver failure. It’s surprising what you can learn. The test is to outstretch your arms and put your wrists back. A healthy person will be able to hold them still. Someone with end stage liver disease cannot control their fingers and they start to twitch or move uncontrollably. Because I suffer with Hepatic Encephalopathy I was experiencing a tremor which is due I think, in basic terms, to the build up of toxins in my blood. I did not like this at all. Not being in control of your body is VERY scary and I got upset and had a bit of a cry 😢 This horrible tremor thing did get better after maybe a couple of hours or more, but didn’t feel completely right for the rest of the day.

I was planning on going into town with my niece Hannah to get myself out the house today but I just wasn’t up to it 😦 Hannah was kind enough to bring me a sandwich back for my lunch, a very heavy bag of Ensure drinks that needed collecting from my pharmacist and some fruit sherbets 🍬which looked real nice, but they didn’t actually have any sherbet in them Hannah You silly billy 😀

Later, a nice helpful lady rang me back about benefits. I am trying to sort out what I am entitled to, if anything. In my confused state of mind this is so difficult for me to sort and the thought of filling in the forms fills me with dread.

1 daughter downloaded some music and stuff for me that I can listen to and watch while in hospital. 1 daughter told me the oven had stopped working halfway through cooking her tea.

Roll on tomorrow.

So extremely tired at the minute (even when I’ve just woken up). Unless your going through this yourself no one understands the type of feeling. But luckily I have no pain at the minute so the days are slightly easier to get through. Only my heart skips a beat if either of my phones should dare to ring …

In Robyn’s post tonight she says she is not able to look after or cook for me and I replied saying I could look after myself. Well my other daughter Leah had to come to my rescue tonight because I almost set fire to the kitchen (by turning the wrong ring on the hob and melting two plastic salad bowls) 🚒

Hmm maybe I can’t be trusted 😦

Jobs, jobs, jobs! Then an argument over some drawers, a walk home in the freezing cold, a bit more chaos, then a nice Chinese takeaway for my dinner!!

Woke up Monday morning – didn’t feel too well 😦 Began to feel better as the day went on, then the extremely painful hand cramps started, just as I was trying to get some more things done around the house.

Have felt quite isolated today 😦 must make sure I get out for a bit tomorrow. Hope I feel well enough.

For my dinner this evening I made myself a bit of comfort food. I had egg and chips!! Not very healthy I know but sometimes you just have to eat something that you fancy. Another reason I chose this is because it was my mums favourite meal. You had good taste mum 🙂 Miss you …

Nothing much to say about Friday! Apart from I met my friend for a cup of tea, hadn’t seen her for ages so it was really nice. And it was good to get out and see what was going on outside of my house. And nothing like the meetings I had yesterday having to try and concentrate and sort out paperwork.

So Saturday I went to Charlbury to Gary’s mum and dads and they cooked a very delicious spaghetti bolognese. Lucky me 🙂 So I’m writing my post from their house while Gary’s trying to set up his dad’s new computer. Here’s a little pic of them when we were on our holidays last year 😀

I must start my post tonight by apologising to Robyn. I am not very good with technical equipment! and find this WordPress quite difficult to use. Which means I can’t always work out how to find other people’s comments or posts to read. So I have managed it at last tonight and have just read all the ones she has done. They are all brilliant, from her point of view and with some very special ones.

So today I had two appointments in Banbury, so I decided to borrow Robyn’s car and take myself. This has been the first time I have driven for a long time and one of the few occasions I have gone out on my own. I was a bit apprehensive (being responsible for someone else’s car made this a bit worse I think). I think I did very well, although something from my shopping (yes I even went into a supermarket) did manage to leak on Robyn’s car seat. I’m sure she was cross about that really.

Maybe as I did so well I can think about going back to work next.

My first appointment was to see my old consultant Dr Ellis who I have been seeing from the very start of my illness. Think he just wanted to catch up with all the gossip really and see what the other consultants had been saying about him! My second appointment was to see my Financial Advisor. I have been arranging a Will with him, in case anything happens to me during the transplant process. And we are also going to try and see if I can get some money out of my Life Insurance, as because I haven’t been able to work for quite a while now, obviously I am getting very little money. All these things have to be taken into consideration and still be dealt with by me, despite people saying that I’m really annoying because I take too long to answer, am muddled and confused, I seem to be able to organise all this stuff. Case of having to I guess.

After I got back I then had a further appointment later in the day to see my GP. I had to give him a letter from Queen Elizabeth Hospital, arrange vaccinations, blood tests and also updated him on what had been happening.

What a day. I really hope I don’t get a phone call tonight as I’m very tired and could do with a good sleep – hopefully. Although I suppose that would be one way of getting it.

I have slight pain in my kidney area and backache today/tonight so am badly hoping that will have gone away tomorrow …

Yesterday I spent the day having intensively painful disabling cramps in my hands, where my fingers just locked into strange positions. I think they were made worse because I chopped a load of vegetables in the morning as I was making a vegetable soup in my slow cooker. Everyone liked the soup when they had it for their evening meal so I think it was worth the pain! But it made it almost impossible to do jobs for the rest of the day, to try and get organised for my ‘hospital visit’. But I didn’t give up. Today thankfully I didn’t suffer these cramps, my hands were just tired and aching!

Bit of a boring post today sorry, just wanted to note down how my illness affects me in all different ways, in case anyone is suffering with the same.

On Monday there was another hospital appointment to go to but thankfully this time it wasn’t for me. Life still goes on as normal. And I went to see the new film ‘Paddington’ which was a nice treat. Normal day really.

Tuesday morning I get the call. I’m now live on the transplant ‘Priority’ list. Phones to be kept charged, not on silent etc. Now on standby for call any time, day or night. Wonder how hard this is going to turn out to be, could be out shopping, in the shower, having a meal, anything

So if I go quiet you will know where I am!

Terrible weekend in EVERY way you can think of.

At times like these I wish I was back in the protective bubble of the hospital, laying on my bed ALL day if I want to and getting waited on with everything I need.

Then you come back to real life with a massive nasty bump.

Been accepted for transplant.

Should I go on the list? Extreme mixed feelings about it all.

And at times like these I wonder if my life’s even worth it. Is it worth all the hassle. Just want to disappear.

Family meeting day with transplant co-ordinator. It filled us all full of information until you could fit no more in. That’s what I felt like anyway. Some of it was quite hard to listen to, I think especially for my family, as I have either been told or I have asked questions myself about the negative side of things as I have seen the various doctors etc during the week. 

Bye Gary – he went back to work 🔧🔩🔨

The anaesthetist came along a bit later. She explained what would happen to me from her side of things, what tubes I would have where etc. Loads basically. Up my nose, in my neck, wrist, etc but she didn’t mention one coming out the top of my head which my big sister Lynda told me Ronnie has in Eastenders! So I guess it could be worse.

Oh bye Lynda – dunno what she went back to, probably ⛳️ or 🍷

Just me, Robyn and Leah left. And we were lucky enough to get a visit from Chaplain Gill who told us about her operation for pancreatic cancer, wished me well and was gone 🙂

Don’t think too much happened after that did it anyone? Just waiting for doctors etc to have a good old gossip about me tomorrow and give me their decision but various people have said different things which make me feel I will be going on the priority list. But who knows? Still MY decision to make 💣

See I’ve found some little piccies? 😃 

Oh and btw Robyn Dunbar, when you next come to visit me do you think you could leave me some of my own water to drink?