Thursday 17th September

I was looking forward to my day out today. The British Liver Trust are holding ‘Love your Liver’ events around the country and today they were in Oxford so as it wasn’t too far away from me, I had made my mind up to go and see what went on. I was going to have a day out on my own.

I walked into town and caught the bus. I decided to sit right at the front on the top deck so I could have a good nosey about while on the way 👀While I was on the bus the British Liver Trust tweeted to remind people about the clinic today so I replied saying I was ‘on my way’ and they replied to me saying ‘please come and say hello’. How exciting! It was a sunny day and the sun was streaming through the big windows. It was SO hot on the bus and there was no escape 😛 I was glad when we arrived and I could get some fresh air and cool down.

I found the place quite easily. There were some ladies stood by the door welcoming people, I was talking to one of them and then she asked if I wanted my liver scanned! so I thought I should explain what had happened to me and then I told her about the tweets and she said she would introduce me to the Chief Executive Andrew. I said that would be nice as I had already spoken to him on the phone. He was the man that rang and asked me if I would like to do the interview on Radio 5 a few weeks ago. So we sat and I had quite a chat with him. I then saw Dr Collier, who was the doctor that looked after me when I was in the JR in Oxford having my drains last year, and she was also the one that told me that she thought it was time for transplant and she contacted Birmingham again which started the ball rolling She told me I looked really well. I did say to her that maybe I could have my liver scanned as I did want to join in but she said ‘no, you don’t need to have that done, I’m sure your liver is fine’ 😒 Oh well, I did try! She also asked me how I was mentally (she obviously knows what a big part this plays and said that she knows of people that have been living with their transplant quite happily for a couple of years, then it suddenly sinks in what has happened to them!) and that she would be happy to have my care transferred to her in Oxford when they will let me, to save all the Birmingham visits. Trouble is my Banbury consultant wants to do that for me too! I had a chat with a couple of other people too, none of them could believe how well I was looking 😊 It was nice to chat with some other people who were interested in what I had been through. They were all so very friendly.

The aim of the clinics is to raise awareness of liver disease really and that it is very important to keep your liver healthy. There were lots of different people to talk to, people from the Liver Trust and the medical profession, you could go on the computer to do the online screener and maybe have the Fibroscan they were offering (this is similar to an ultrasound, it measures the stiffness of the liver through sound waves). Then from the results you could be told that your liver is in good condition or be advised to go and see your doctor. It’s a real good idea to get things checked out, the earlier the better.

YOU can do the online screener if you would like. Go to http://loveyourliver.org.uk then click on Love your Liver Health Screener. Good luck! 😀

They seemed to be busy anyway, I think they had a successful day. I was very glad that I had paid them all a visit to see what went on.

I decided then to take myself for a Costa coffee and a bit of a blog. I was also tempted by a mozzarella, sun dried tomato and pesto panini 😋

Time for a walk around the shops. And guess what I bought this time. Yes, another bag! Grey this time with tassels. Hope they all like it back at home

I was a bit early for the bus home, so I found myself a doorway near the bus stop and I sat and did a bit more blogging!! Loved it.

When I got home it wasn’t long before it was time for my weekly walk!! The fair had just come to Chippy for a few days so we added a walk through the fair to our walk around the town this evening 👣 

My poor feet 😦  Nice day though 🙂

Tuesday 15th to Wednesday 16th September

On Tuesday I couldn’t really get myself up and motivated to do things and even when I did, I didn’t seem to have much concentration. I think my visit to the hospital yesterday was still playing on my mind. Eventually I just did a bit of pottering around

As I was feeling a bit fed up of being at home on my own I text my sister Julie to see if she wanted to meet for a cuppa in Cafe Nero when she had finished work. She replied saying she couldn’t because she would be getting in the bath as she was going out to a local fair later with Hannah. Witney Feast 🎢

So I decided that I would join them, and then we all persuaded Robyn to come too. I tried to get Leah to come but she wouldn’t 😦 Some of the rides at these fairs are quite scary looking aren’t they?! And sometimes just sitting on any old blocks of wood! I don’t like the look of them Robyn loves to go on all of them. She did persuade me to go in this Fun House with her though 😃

Then as we were walking back to the car we decided to call in to the church where they were serving drinks and a band was playing. So we had a cup of tea with the vicar.

Their all having great fun aren’t they?! 😂😂😂

On Wednesday I just did a bit more pottering about I think. Not a very exciting day.

Don’t forget to have a look on my Photos page if you would like to see the latest photos I have uploaded of our trip to Brighton 📷

Monday 14th September

Clinic visit today. I was looking forward to it for one reason only. I was going to see a very special lady first. My nurse from Critical Care, Anisa. She looked after me when I first went in there and had just come back from surgery, when I was very ill between transplants and quite a few times after. I remember her telling me that she went down to theatre with me when I was about to have my second transplant and that she gave me a wash and did my hair for me while we were waiting to go in. That is very special to me and whenever I think about it I get upset …   She also always did my hair after my morning wash too, not all the nurses do that. This probably sounds really silly to everybody else but when you are led in a hospital bed for weeks and are not able to move or do anything for yourself, these tiny things feel so nice and make you feel a tiny bit human again, maybe even a bit more presentable for visitors when they come, because they must have been thinking ‘oh my goodness me’ or words to that effect! when they first saw me. I must have looked horrendous. She was very caring and made me feel safe. Sometimes I felt very scared while I was in Critical Care and I was always so pleased to find out Anisa was going to be my nurse for the day. When I had my crazy dreams, she was sometimes in those too. Anisa – you are an angel 👼

Anisa was also very helpful to Robyn, Leah and Gary too. As she was the first nurse they saw when visiting me after surgery they told me she always explained everything to them and tried to reassure them. Anisa told me they were all very nervous and scared when they first got there. I think they soon felt at home in there though, always asking questions of the nurses and doctors, they knew everything that was going on in great detail. I think they knew as much as the liver doctors did at that stage! This meant that they could tell me everything that had happened while I was asleep and when I was crazy, which I had told them before transplant that I definitely wanted to know. I don’t think they know how extremely proud of them all I am, for the way they coped and dealt with things through a very difficult time. Totally amazing.

So anyway, me and Robyn went down to Critical Care when we first arrived at the hospital, pressed the buzzer (Robyn told me that the buzzer still fills her with dread from her time visiting me) and were told that Anisa was coming out to us. She asked me if I was okay and how I was getting on. She told me I looked amazing! She was so pleased that I had come to see her. She said they just get to see the patients when their all swollen and full of wires and don’t normally see them again after that. As we were talking my liver transplant co-ordinator Julie came round the corner. Bit of a coincidence! So we had a bit of a chat with her too. Then Anisa asked if I wanted to have a look around Critical Care. Hmm, when I went in before I found it a bit upsetting, but I did want to go in again. Kind of In we all went. Anisa was going around asking the nurses that were free if they had looked after me! So I met two more, Tracey who I remembered a bit and Sarah who I remembered a lot!!

Thanks Anisa – for everything 😚

Then it was time for my scan. I was having an ultrasound before clinic today, I thought that the doctor told me last time that it was to check if I still had any fluid but the lady just seemed to be checking that everything seemed okay I think. So I asked her and she said there was a tiny bit of fluid around by my spleen but nowhere else. She said it all looked and sounded okay (they listen to the blood flow) so that was good news.

I was not allowed to eat and was only to drink water before the scan so I was now a bit peckish and weak feeling! But because I had to wait ages for my scan we didn’t really have enough time to get lunch for me so we just went to the Costa that is in the hospital and I got a latte and a blueberry muffin! Of course Robyn had been very organised as usual! and had brought her lunch with her.

Bet she wished she hadn’t 😀

It was then time for my clinic appointment. I saw another different doctor. I don’t know if he was in a rush to get home or what but it was as if he wanted to get us out of the room pretty quick! I’m not going to go into detail but I left the room feeling a bit let down. I haven’t felt like that with any of my visits there before. I know I don’t like going to clinic anymore but I’m sure it wasn’t just me and that was the reason why I was feeling like this

After you have seen the doctor you then have to go back to the waiting room to wait to have your blood taken. While we were waiting we saw a man who was a couple of beds away from me in Critical Care, he was sat forward with his head in his hands and didn’t look well to me. This, along with my appointment with the doctor I think, all got to me and I got very upset. Bit embarrassing while sat in a waiting room full of people but oh well, you can’t help your emotions can you?

Then this lady sitting next to me showed me lots of bruises up her arms and said she was embarrassed by them and had to wear long sleeves all the time. It was caused by her medication. She said ‘I nearly died 18 months ago’, she had some kind of hepatitis. I said to her ‘oh, I nearly died in February!’ Funny isn’t it, what you say to complete strangers in waiting rooms 😳

I was so glad to get out of there. It had all blown my mind.

We stopped off to get some shopping and then headed for home. Even that wasn’t going to be straight forward for us today. Apparently there had been an accident on the motorway and we got stuck in loads of traffic again.

Poor poor Robyn. She hates having to take me to clinic and doing other things for me on her day off and I don’t think it’s too fair on her all the time either. I don’t like being a burden to anyone. Sorry 😠

I was watching This Morning yesterday and they did an interview with two people coming live from America. The man had been given a FACE transplant and the lady who was sat next to him was the donor’s sister. Can you imagine that, whenever she looks at that man she is seeing the face of her dead brother. I find that incredible.  

Seven of his other organs were used too. Amazing donor family.

Saturday 12th to Sunday 13th September

Went to Oxford on Saturday so that I could take the bag back that I bought the other week. No one else really liked it too much, but apart from that my iPad didn’t fit in it comfortably, that’s no good to me as wherever I go my iPad goes too!!! They wouldn’t give me my money back though so now I have a credit note for a shop that I don’t even normally go into. Thank goodness Christmas is on its way!

Emma had been staying at her friends in Oxford so after our shopping was finished we picked her up and all came back to Chippy.

I then went back to Gary’s and had garlic and herb spatchcock chicken with some curly fries! 😜 Yummy though.

On Sunday afternoon Gary came down to put my garden storage chest together. Yay! 

  
I was also pottering about in the garden while he was doing this. Jake decided he was going to help me with these tiles I needed to sort out.

  
There was a big hole in the grass at the top of the garden so I decided I was going to fill it in with the dirt that Gary had been digging out to level the ground!!

It was PBC Day today and the PBC Foundation were asking for photos to be sent in to them with the #movementasmedicine so I tweeted the above photo to them, they replied to me saying ‘great photo, thanks for sharing’. Towards the end of my illness and before transplants, I wouldn’t have had the energy to even think about doing something like this.

After a while Robyn came and sat in the garden with her pyjamas on (she hadn’t got much sleep the night before) and then Julie and Hannah came around, so we all sat and had a cup of tea in the garden. How civilised!! Well it was until Gary decided to break my garden chair and ended up sat in the plant pot which was underneath it 😂

Later I bought Gary a Chinese takeaway to say thank you! 😊

I had started to feel better this weekend apart from my body aching, that didn’t seem to want to go away. And my feet and ankles were still quite painful, think I’m going to ask the doctor about this on Monday, as their hurting me!  😦

Friday 11th September

Had to get up early this morning because I was due to have the gas and electric meters changed! The gasman arrived first. He didn’t like dogs so I had to shut Jake out in the garden. Apart from that it was straightforward for him. Then the man from the electric arrived. He couldn’t get one half of the cupboard open where the wires were he needed to get to, it was screwed shut and had then been painted over! I told him to just force it open somehow, my landlady wouldn’t mind about the cupboard, but he said he wasn’t supposed to do any damage Oh no I really wanted it all to be sorted today. So he had a bit more of a try and eventually managed to get it open just enough to get his hand in. Then he discovered the wires needed replacing too so he needed to go back out to his van. But when he came up the stairs he whacked his head really hard on the low ceiling at the bottom and shouted out. Whoops! Poor man, I know from experience that it REALLY hurts. I bet he was glad to get that job over and done with!

While these jobs were going on I was also trying to get hold of the plumber and a builder to do some other jobs. The plumber was going to come round later today and the builder on Saturday morning, to see what needed doing.

Then I got a message from Lynda saying did I want to meet her for a coffee. Ok then! So off I went.

After I had been back a while the plumber knocked on the front door and Gary knocked on the back. The plumber looked at the pipe out in the back garden, couldn’t see a major problem but said he would be back next Saturday maybe, to change something and see if that worked! Gary had come to put together a big storage chest to go in the garden so I could sort/tidy some more of my stuff. But that wasn’t straight forward either. It needed to go on level ground. So as he wasn’t going to be able to actually put the storage chest together this evening, I persuaded him to dismantle Jake’s very old dog kennel and level the ground a bit more so the chest could go there!! Thanks Gary 😊

I then cooked myself some food because as I was out in the garden I had missed my chance of Robyn making some for me! 😦

And all of this happened while not feeling well again today. Fiddle, after feeling better yesterday I thought I was getting over it.

Monday 7th to Thursday 10th September

I had a meeting with someone from HR and my boss Adam today in the Co-op. I wasn’t well though, still had terrible headache, felt a bit sick, body was hurting and a bit wobbly. Really didn’t want to have to bother with something like that, why did it have to be today 😷 But I didn’t feel like I could cancel it. I had been due to see him a couple of months ago but it was when I had my infection and was in hospital and apparently, Hannah told me, Adam had been expecting to see me since then but I didn’t get a letter or anything

Off I went. I walked along with Robyn, she was going to get some shopping while she was waiting for me. Then it turned out that I was only seeing Adam. He just asked how I was getting on really and if I was thinking of going back to work and when. A very short meeting. Sure I could have told him this over the phone. Oh well, at least it’s been done now.

We popped in to see Julie and Hannah. Hannah had a day off from work and had been Christmas shopping can you believe?! Hope you got me something good Han! 😊

Tuesday, Wednesday and Thursday were mainly just spent at home again. I still didn’t feel 100%. Robyn wanted me to see the doctor but I was trying my best to resist this. I just didn’t want to end up in hospital again and that’s where I think they probably would have sent me. 

I think it was on Tuesday morning that I didn’t get myself out of bed until 10.30! I almost gave in and rang for an appointment but as I had no temperature I thought I would give it yet another day!

Wednesday afternoon I went along to Robyn’s salon as she was going to do my hair for me 💆 My hair seems to have changed since my transplants. It seems to have gone a bit wavy and out of control, sticking out in weird places just when and where it feels like it. Robyn always asks me ‘right, how are you having your hair this time then’ and I normally never know and it frustrates her! So this time I gave it a tiny bit of thought and said maybe I should let my hair get a bit longer to see if that makes it a bit heavier and stops the sticking out. Robyn agreed. And I also said I wanted to be a bit blonder. Then we were talking to Kayleigh, Robyn’s friend who works there too, and she suggested a copper colour which sounded nice. So we went ahead with that instead! When Robyn got to the cutting stage she noticed that the ends of my hair had gone really quite thin so I needed quite a bit cut off. So I went to the salon thinking I was going to keep the length it was and grow it and be even blonder. And I came out with shorter hair 💇 and maybe it was even a bit darker! I don’t think I will give it any thought again the next time!! I liked it in the end though. Anyway the main thing was I still got my bit of pampering. I love the way Robyn washes my hair, a lovely good old rub followed by a head massage. You can’t beat it! Thanks Robyn 🙂

I seemed to feel a bit better on Thursday. The headache had finally gone. I went for a walk in the evening. I always enjoy that. My feet, legs and especially my ankles don’t though. I always suffer with those when I get back 😦

I have been feeling quite fed up for the last few days. I think it’s mainly because I’ve had enough of not feeling well and having an aching/hurting body and feeling exhausted. Makes everything you have to do so much harder.

Saturday 5th to Sunday 6th September

A boring day for a Saturday but I didn’t mind too much as I didn’t feel well. My head felt a bit like it was full of pressure! I wondered if because of the cold I had all last week, I had now got sinusitis 😦 I also just felt a bit weak and wobbly and I didn’t really feel like eating too much.

So I had a lazy morning and then made myself do a few jobs around the house in the afternoon. A bit later I received a text from Hannah asking if I wanted to go along there for a cup of tea and cake! What is wrong with that girl lately? She wanted to see me twice in two days? Is it something to do with the fact that her birthday is coming up soon? 😜

I had a couple of vanilla cupcakes with my cup of tea. Yum!

Then in comes Robyn with a handful of dry leaves and throws them on Julie’s carpet. Funny! It seems like Julie has a bit of a thing about the leaves in her garden and outside her front door. She has to keep raking them up 🍃🍂 so it’s coming up to a very busy time for her!!!

Sunday was a trip to IKEA with Gary and his daughter Emma. I really wasn’t sure whether to go or not when I first got up as I was still feeling pretty awful. It seemed that this awful headache I had wasn’t going to give up 😦 But I also didn’t really want to spend another day at home on my own as both Robyn and Leah were out all day doing other things. So I got myself together and off we went. Emma has just decorated her bedroom so she wanted some new bits and pieces to put in there too. We then went to the massive Asda that is next door to IKEA and got a few more things. I think the shopping trip was successful.

It was a bit of an effort for me to get round those shops today. I kept finding myself little places to sit while I waited for the others. I don’t mind doing things like that though, I just did a bit of people watching! 👀

Chaser (a local band) were playing in the Blue Boar this evening. I was exhausted but again I made the effort and me and Gary went down to watch them. Actually had quite a fun time there. And we shared some cheesy chips 😃

Friday 4th September

I wanted to get out of the house today as I had mainly just been at home for the last two days. I wasn’t feeling that great but I thought a trip out would do me good.

I needed to sort some money out at the bank and TSB and needed a bit of shopping so I decided I would walk to town, do my jobs there and then go for a coffee. 

It was hard work walking into town and I was getting a bit breathless. I know I had a cold but it felt like a chest infection by the way I was feeling. Noooo, I don’t want to get anything else, I don’t want to end up in hospital again.

As I got into town I met Hannah my niece. She was on her lunch break. Believe it or not, this time, she actually said she would come to Cafe Nero with me 😀 

Walked back home, got something to eat and was glad to just sit on Gary’s sofa later, with a runny nose and feeling shattered.

Wednesday 2nd to Thursday 3rd September

Back to being home alone again after the last few days. What was I going to do? Catch up with some washing that’s for sure. And other boring housework jobs. I even cooked a meal on Wednesday evening and ALL three of us had the same food at the same time! Most unheard of in our house because Robyn and Leah finish work at different times.

Leah did make me laugh with tales of her day at work. They were a bit short staffed through illness, so she was needed in three places! She was running between rooms, ‘Leah can you do this’ ‘Yes just one minute’ ‘Leah I’m the new dentist’ ‘Hello, nice to meet you, I’ve got to go’ as she was halfway out the door and as she trotted off to another room. ‘Leah can you come to reception?’ ‘I’m just coming’ Up and down, up and down, two flights of stairs. Sounds like a very busy day 🏃

Thursday a repeat of Wednesday really

Quiet days. My cold started at this time too and I wasn’t feeling 100%. My whole body was aching, I think even more than normal. I carried on with my jobs but did keep sitting down, then getting back up and starting again.

I get very frustrated when I can’t do all the things I want to do.

I went for my weekly walk! 👣 For an hour and twenty minutes this time. And blimey I suffered when I got home. Probably because I wasn’t feeling that great anyway. My legs and especially my feet were very painful. 

My legs and my feet hurt when I first get out of bed in the morning too. What is this? Old age? 😦