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?  

What can I say about today 😗

Met one of the surgeons this morning. Charming man! and very professional. Told me in great detail what to expect with the transplant, some of which I understood, some not. It’s very real now, it could be happening …

I asked him about living donors as in the past we had been told it wasn’t an option but he disagreed and said their a good option – so if anyone’s interested?! A lot of serious thought has to go into it tho.

And then I actually got a visit, YAY, from my sister Lynda and her husband John. They bought me a latte coffee 😀

I also was visited by 3 people, 2 of who had undergone a liver transplant themselves and 1 who’s wife had, but many years ago. Lovely people, but not at all what I expected!! Will definitely be searching for others that are maybe a bit more current if you know what I mean?!

Oh I also face timed my two wonderful daughters who seemed most disinterested in me. But they were waiting for their friends to knock and take them to the pub!! Missing me aren’t they. One just kept laughing at me, the other just sat looking!! What else are daughters for. Oh and Leah in response to your comment about me not being there to ask you strange questions, I will be back, I think I have been texting you a few still and always will, and as you weren’t available earlier I have asked the surgeon some today, poor man😁

So most of today I have spent lounging around on my bed, which was fine this morning as very sleepy and not that great again. But I seem to come alive at night so do you know what I’m going to do now. I’m going to go and explore the hospital etc and hopefully come back via a shop so I can get some nice goodies. So wish me luck as I am a bit unsteady on my feet, off I go …..

Consent form for transplant signed. Aaaargh. Terrified 😦 😦

So the co-ordinator turned up. Really nice, helpful lady. We have arranged a family meeting for Thursday morning. What actually might be happening to me is beginning to sink in. Terrified and tried to have few tears on my own when she left. But guess what – in comes a nurse wanting to take my blood pressure again. Because I had been watching the helicopter and I said about my daughter Robyn, who had to go in 1 after road accident, she started talking about her daughter who was very nervous of driving after she had a minor bump, her mother in laws car crash, then her daughters love life and how she went on Internet dating for a bit, then her daughters illness, her son, her husband. But all of this was in such great detail without hardly a breath being taken!! She was lovely but not quite what I needed just at that time 😕
And she also made me miss my other photo opportunity cos 5 minutes after the yellow helicopter taking off a red and yellow one arrived which was the same colour as Robyn went in and I wanted to show her. (Sorry Robyn)
Oh what fun 😆