Friday 2nd to Sunday 4th September

I went back to sleep after my alarm went off this morning 😴 Thank goodness Robyn shouted to me just before she left for work which woke me up again or I don’t think I would have made it to work myself And then I was still very tired and didn’t feel quite ‘with it’!

This weekend it is 350 years since The Great Fire of London which gutted the heart of the city. To commemorate this, on the Thames a giant wooden replica of the 17th century city was set ablaze. I apologise in advance if you are not able to watch the videos in this link, but the photos are great anyway! 😏

So there was also a 3 day fire festival and a 23,000 domino topple which went on for 4 miles (this actually fascinated me, how did they stand all of those up without one of them being knocked down accidentally and setting it all going before it was completely ready?! 😱)
We managed to watch the start of the fire 🔥 live over the Internet! but I didn’t realise all these other things were going on too 🙃

Back to my iPad and I found two bits of reading for you!

As Scott Ramsay says later on in this article, it is the basic things which you miss, in my case while ill AND for quite a while into my recovery.

Seeing the photo of this poor baby led there with her swollen tummy brings back horrible memories of my own ascites 😖 Thankfully she was lucky enough to be able to have her own father’s liver.

Saturday morning and again I was still very sleepy when I first woke up and had no ‘get up and go’. In fact, I did actually just lay in bed for longer than I normally would!

Later in the afternoon we all went over to Alice’s house (my nephew David’s girlfriend) for a barbecue. You could say it wasn’t the best weather for it! 🌧

We still had fun though. A spot of table football, a game of darts, music playing from a jukebox. And Julie kept us entertained with her antics after drinking a bit too much wine!

On Sunday afternoon we had a drive out to Millets Farm Centre where there was a Chilli Fiesta going on! There were lots of different exhibitors with most of them doing tastings, from chilli sauces to chilli flavoured cider, there were chilli plants to buy and amongst it all a band were playing traditional Mexican music. It was lovely to see an old couple that were enjoying dancing, quite professionally it seemed, in front of the crowd that was gathered round.

Gary made me a tasty spaghetti bolognese in the evening 😋

Here’s just another reason why we always need as many people as we can to sign the Organ Donor Register. These childrens’ lives have also been saved by transplants.

And why not have a read about this amazing lady. 99 years old and still working. I somehow think I will not be able to follow her example 😏

Monday 29th August to Thursday 1st September

Bank Holiday Monday. We had been invited round to Gary’s sister Ali and her family for a barbecue, so off we set with Emma. It was a lovely day for it! 

Delicious food, a short walk in the woods (as bodies were still hurting from The Feastival at the weekend), a little go at table tennis in the garden (that was fun!) and a nice relax in the sunshine 🌤 We had a nice day.

Both Tuesday and Wednesday off from work this week. I can’t remember if I have already said, but I have some time off owing from last year, so that’s why I’m having extra holiday at the minute. I didn’t do anything special, just jobs, jobs, jobs, jobs, jobs!

I did speak to my consultant’s secretary in Birmingham. She told me that my blood results were a little bit better this time and could I please reduce my tacrolimus. (So my current dose is now 2mg in the morning and 3mg at night). Good news, but I really don’t know what it means. I guess I just wait for my next appointment to have a chat with the doctor, hopefully have the promised scan, and see if they can tell me any more news then 😏

Volunteering Thursday! I went to see a lady that I saw last week. She was going home later today, so that was good news. I hope she gets on okay when she leaves the routine of the hospital, as in her case that was something that was really helping her. I do always feel a bit sad when I say goodbye in one way as it usually means that I don’t see those people again

I spoke to a man today whose wife was caught up in the London bombings back in 2005. Blimey, I am certainly having some interesting conversations doing this job.

I decided to go outside today to have my coffee and croissant as the sun was shining ☀️ But I didn’t stay out there for long, it was just TOO hot, I could feel it burning my legs in just that short space of time! 

I called back in to say hello to Mark. He wasn’t his normal self, he was in pain and I didn’t like it 😞

In the early evening a man called round to pick up the flower pots which I had sorted out from my shed as he wanted them to plant out his flowers. And then another couple called round to pick up the half used tins of paint I had also sorted which their kids were going to use to decorate the flower pots in their garden. 

Sometimes I enjoy having a sort out and putting items on Freecycle for people to just have. Makes me much happier than things just being thrown away. 

So that was my good deeds done for the day! 🤗

Saturday 27th to Sunday 28th August

This weekend I was off to Jamie Oliver and Alex James’ The Big Feastival 😃 How lucky was I? For the last few years Gary has slowly driven me passed this event, as it is only 5 miles away from where we live, and we have had the car windows down having a listen to the music! But not this year – we got tickets 🤗

It started off nice on Saturday morning, quite warm with a bit of sun. We watched Reggie n Bollie, they were good. We had a good wander around. It was a big festival! There was lots to see!

And then came the storm ⛈⛈⛈ It was real bad! We were incredibly lucky in that we were already in a marquee watching music on ‘The Udder Stage’ so we stayed put. The storm went on, thunder, lightning and torrential rain. Parts of the festival had to be closed for a while. ‘The Cheese Hub’ got flooded. The ground was saturated. So when the storm eventually stopped, the weather cleared and the people started to walk about again, you could say it became rather muddy!

We watched Ella Henderson. We raved to DJ Fresh with Robyn! who was also there with her friends. I think we were two of the oldest people squeezed in down at the front but it was great, I REALLY enjoyed that. And we watched Tinie Tempah.

I was tired, my back was hurting, in fact my whole body was hurting A LOT from head to toe 😖

Sunday morning, and I really wasn’t sure how I was going to cope with another full day and evening at The Big Feastival – but off we went!

The weather was much nicer thank goodness. Quite warm and sunny for a lot of the time ⛅️ 

We had another good walk around. As well as the music there were lots of different food stalls to look at too, some giving away free samples 😋 We met up with my niece Claire for a while, who was there with Tia and Freya and some friends.

I had some freshly cooked tomato and basil pasta for my supper!

We watched The Proclaimers and the Kaiser Chiefs. It wasn’t until they had almost finished that I realised that I was watching Ricky Wilson who is also a coach on the TV programme ‘The Voice’ 😏 Sometimes my brain just doesn’t seem to work !!! 

Well I did it. I survived it. I’m really not quite sure how I would love to know just how many miles I have actually walked this weekend. Around and around the festival site as well as to and from the car, which we had to park some distance away behind all the campers in their tents! 

I am now suffering – but I had a great weekend 😀

(I have uploaded photographs from the weekend to my Photos page. Please do have a look. I must give all the credit and thanks to Mr Gary Walker for the photography (and thanks to Robyn for the one I pinched from her!) as although I had spent lots of time trying to clear some memory on my phone, it still wouldn’t let me take any photos! 😤)

Thursday 25th to Friday 26th August

A busy morning visiting patients today! I met another lady with PBC that is currently waiting on the transplant list. I hope she gets a call real soon. 

I also then actually managed to see Dr Collier on the ward (who is the consultant that I first approached with my visiting idea) and she gave me a hug and thanked me and said that they had been having good feedback from the patients concerning my visits, so that was good for me to hear 😀 

I sat and had a coffee and a croissant in the reception area while I was waiting for my bus and did a bit of people watching! A man was sat waiting for someone, he had a lovely dog with him that was being trained as a guide dog. A little boy of about 5 or 6 (who had learning difficulties) was sat with his carer. He started to stroke and play with the dog. The amount of joy that little boy got from that dog in the short space of time they were there was quite amazing! It was lovely to see. I can certainly now understand even more why they have therapy dogs visiting nursing homes, hospices, special needs schools etc.

And on the Park & Ride bus on the way home I sat by a man that had just finished work in the local Co-op and it turned out that he used to work with my boss when he worked in a different shop and is a good friend of his! It’s a small world 🌎

Robyn bought me some sunflowers today 😀

Friday and so I went to work. It was a lovely hot sunny day. I sat on my till thinking that I could now be at the festival that was going on near us and which I had just been lucky enough to get some tickets for before I left for work this morning 😣 Never mind, I’ll be there all over the weekend.
So I spent a lot of my time in the evening trying to clear some space on my phone by transferring some of the photos to my iPad. I needed to clear some space so that I would be able to take yet more photos at the weekend.  This was frustrating me though as I seemed to be getting rid of loads of photos but the memory just didn’t seem to be increasing again 😳

The death of the photo album? I totally agree with just how sad this is! We all used to enjoy getting the old photographs out at my mum’s house and looking through them. Some nicely displayed in albums, others just in a box that we used to rifle through! Laughing at all the funny hairstyles and clothes 😀 And bringing back all those lovely memories.  

I like to take loads of photographs, some especially to use in my blog, but I also want to be able to show my own grandchildren what their respective mum’s used to look like at different times in their lives and what silly things we all got up to!

But I know for sure that I have photographs from when the children were younger that at the moment are ‘lost’ on our old computer and an old mobile phone of mine. Will I ever get around to somehow getting them taken off of these devices so that they can all be looked at once again? This is something I really MUST do.

Monday 22nd to Wednesday 24th August

Clinic day. A bit of a novelty, feels like I haven’t been for absolutely ages.

Robyn drove 🚙 We left early enough so that we could sit and have a bit of lunch on our ‘picnic bench’. I even found the time for a bit of blogging 🤗

I had to wait for ages to be seen. In fact I think I was just about the last patient in the waiting room! And then we got a big shock 😱 The consultant I saw said that he thought my illness may be coming back. What? Apparently some of the levels from my last blood test were too high and this was what he thought the problem was.

Robyn was upset and worried immediately, I do think I was in a state of shock. This was totally unexpected. No one had contacted me previously to say about my blood results, which we understood they did if there were any problems with them. The doctor was very good and took some time to have a chat with us and told us not to worry!

My next appointment isn’t for two months when I will have an ultrasound scan too to check all the ‘pipe work’ as he put it.

So then off we went. A difficult drive back for Robyn. We text Leah to tell her the news.

I think the general feeling for the rest of that evening was ‘what on earth is going to happen now?’

Tuesday was a day off. I think what I had been told yesterday was starting to sink in a bit, but I was determined that my time wasn’t going to be wasted, so I just got on with all the sorting jobs I had set myself (more preparation for the house move).

I have too much to do to sort everything out to be held back with moping around because of my illness returning. And I need my girls to show me they are being strong about this as they are the ones that keep me going. Of course I am worried about them, but if they are a crying heap on the floor then I will be too and that just cannot happen. So on we all go …

‘My dad suggested I register for a donor card. He’s a man after my own heart!’ This won Masai Graham the funniest joke at the Edinburgh Fringe Festival 😂 I myself quite like number 3 on the list!

I was back at work on Wednesday!

I just want to give this transplant band a mention! – Gifted Organs. If you click on this link you can watch a couple of their videos 😀

Saturday 20th to Sunday 21st August

I don’t want to talk too soon but my back and hip was feeling a little bit better this morning 🙂

Good job really as I needed to help Gary load the car – we were off to the tip. As a result of me sorting my shed recently there were a few things that needed to go and Gary also had some bits and pieces in his own loft!

For some reason I get a good feeling from a visit to the tip 😂 I love putting the things in the various skips for recycling – cardboard, metal, rubble, small electricals etc. I guess it’s a type of Life Laundry. I don’t think I will ever be as organised as this person is suggesting but I do think I am maybe getting just a tiny bit better? 🙃

Here is something which I have recently seen on the Transplant Chat Facebook page.

A psychologist walked around a room while teaching stress management to an audience. As she raised a glass of water, everyone expected they’d be asked the “half empty or half full” question. Instead, with a smile on her face, she inquired: “How heavy is this glass of water?”

Answers called out ranged from 8 oz. to 20 oz.

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, it’s not a problem. If I hold it for an hour, I’ll have an ache in my arm. If I hold it for a day, my arm will feel numb and paralyzed. In each case, the weight of the glass doesn’t change, but the longer I hold it, the heavier it becomes.”

She continued, “The stresses and worries in life are like that glass of water. Think about them for a while and nothing happens.

Think about them a bit longer and they begin to hurt. And if you think about them all day long, you will feel paralyzed – incapable of doing anything.”

Remember to

PUT THE GLASS DOWN.

Great that isn’t it?

On Sunday we went off to Banbury Food Fair where they have loads of different stalls all around the market place, lots of lovely homemade cakes to buy and take home with you, flavoured gins to be tasted, or you could have bought some hot Caribbean food for your lunch. And there were cookery demonstrations going on in the Town Hall.

The Food Fair also incorporated the Banbury Flower and Produce Show. Entries are invited for different categories – Fruit, Vegetable and Flower Growing, Baking and Preserves, Crafting, Floral Art, Childrens Creations and Photography.

I always love to look in this tent. Some of the things that people choose to enter into the different categories do amuse and amaze me, but I do appreciate that they have put a lot of their time and hard work into it! 😏

Oh and by the way, I have just put some new photos from my summer holiday up on to my Photos page. Feel free to have a look!

Tuesday 16th to Friday 19th August

I had a day off from work today. My landlady had arranged for an estate agent to call round to the house to get it valued so I needed to get a bit of tidying up done! Then as it was a lovely day I decided to do a bit more sorting out in the shed and garden. I got on quite well and sorted a few more things for me to try and sell or to put up as an offer on the Freecycle site. The only problem was that my back and now my hip was really hurting which made everything so much harder to deal with 😫

On Wednesday most of the day was spent at work.

A lot of my volunteering time this Thursday morning was spent with a lady that also suffers with PBC. Next week she has got an appointment to find out about going on the transplant list. We had a good chat about all sorts of things and I hope I helped to put her mind at rest over just a few things. I really hope everything turns out well for her. 

I enjoy watching most sports on the TV now. Gary is a football fan and I really do enjoy watching a game with him! I affectionately say it’s because of my ‘man liver’ 😍 I was talking to Mark about this and he asked me what team I support. I don’t have a special one yet! He came up with a great idea – if I could find out where my second donor was from I could start to support that town’s football club …

Unusually I had got an appointment to see my own GP, I didn’t want to lose that chance, so off I went. I was going for my outstanding blood results. My urate level had gone down slightly and at last I found out that the test was negative for CMV, so I must have just had some other weird virus when I was ill a little while ago now.  

I decided to mention about my hip hurting while I was there as I was getting a bit fed up with the pain! He basically said he thought it was because I was getting old!! – wear and tear 😫 Great.

So I decided to go ahead and try a walk out tonight and see how I got on. I made it round and it wasn’t quite as bad as I thought it might be.

Friday was just a non-stop day, a busy morning at work in the Co-op and a busy afternoon at home.

Have a look at these childrens’ lunches from around the world. There certainly are some odd combinations there 😏

Saturday 13th to Monday 15th August

My mum was left handed, I am the only one out of her five children that is left handed and only Leah is left handed!

This Saturday was spent with just a trip to the shops for me and Gary I think and then back to give Robyn and Tom a lift to a party in a nearby village. 

When we were in the car Robyn gave me a present 😀

What a great t-shirt. I am spoilt. I love it 😍

Another lovely weekend weather wise so between jobs and blogging some of my time was spent in the garden and some of my time was spent watching the Olympic Games, including staying up until the early hours of the morning to do so!!

And on Sunday evening we popped round to Gary’s neighbours for a farewell drink as they were moving house.

Look at these lovely iced lolly recipes I found. Delicious, and they look so pretty too. Why not give some of them a try?!

Monday was just spent doing all the never ending jobs at home! 

In the evening we went to have another look around the new house we are going to be living in. Robyn and Leah needed to have another look at the bedrooms and have the ‘fight’ about who’s going to be having which one! And I needed to have a look in the tiny one I’ve been given – I’m not sure my bed is actually going to fit in it, let alone all my junk 😖

Then Robyn and Tom made me a delicious salad!

Thursday 11th to Friday 12th August

Volunteer time! When I got on to the ward at the JR this morning, one of the doctors gave me the names of four patients that he thought it might be a good idea for me to visit. I went to see a couple and then I couldn’t remember the others’ names I did feel stupid and annoyed with myself that I wasn’t able to remember. When I saw Mark later I told him that I was suffering with a bad back and leg on two separate occasions during the conversation! So when I also told him about not being able to remember the patients’ names as well he said to me ‘you shouldn’t be having problems with that now’ referring to the confusion that liver patients can suffer with. I hope I was just having a bad morning 😖

When I had finished my visiting I went and got myself a coffee and sat in the reception area. Who should come and sit near me – my original consultant Dr Ellis! I went over and said hello to him. He said he had just called in between visiting two hospitals as he needed to check his emails and he didn’t think anyone would recognise him here! Whoops, that didn’t quite work out to plan then did it? 😏

Unusually I had a conversation with the bus driver all the way back to the Park & Ride (normally they just grunt at you). He told me about his caravan in Weymouth, visits to other seaside places, how he’s been on scary rides with his grandaughter, he slowed the bus down to show me some building work that was going on! He told me about a bad crash that had happened locally and did I know how many Olympic medals we had won today?! It was non stop. But it did make a nice change.

I didn’t go on my walk this evening. It would just have been too painful and I don’t think it would have done me much good. I wasn’t too happy about this. I always look forward to my walks 👣

Anyone fancy a Baked Potato KitKat? Yes really! Click on the link to see what other bizarre flavours are also available 😏

Another Friday spent feeling unwell at work. Headache, nausea, tiredness and still suffering with the pain in my back 😩

And finally, for those of you that use Facebook, why not have a look at the ‘Amazing Photos in the World’ page. Some of the pictures on there are quite brilliant. But I picked this fun one to share with you!

Monday 8th to Wednesday 10th August

I had to try to get my head working again this Monday morning. You could say I was feeling a bit stressed! I hate trying to get back to normal after being away on holiday. And I had so much to do. I needed to catch up with some normal jobs and I also needed to sort some stuff that was lying about so it could be taken to our local charity shop, amongst many other things.

But when Robyn got in from her gym and yoga sessions we went off to Banbury instead of getting the jobs finished Neither of us were in the best of moods so we called in to Costa (that always seems to calm us down!) and I did some blogging and then it was time for the dreaded food shopping.

Tuesday was my first day back at work following my holiday and I was going with a bad back 😖

In the afternoon I had a phone call to make to try and sort out a quote for the buildings and contents insurance ready for the new house. Why do they ask so many questions! It takes up so much time. And then of course there are always the things you can’t answer, so you have to go away and find them out. A frustrating job!

There was also a pile of paperwork from the solicitor waiting for me to read through and sort out, forms that had to be checked, signed and sent back. So complicated, I couldn’t get my head around them very easily 😒

There were also some bags and odd bits hanging around from my holiday still waiting to be unpacked and put away.

Too many things that all needed doing at the same time – I was stressed!

But I did get to read this lovely story made possible by organ donation – a bride was walked down the aisle by the man that had received her father’s heart. What a great thing to be able to do 😀

I didn’t feel great on Wednesday but off to work I went. My back really hurt and I had pain in my hip and down my leg when I walked. It seemed like an awful long way to work this morning 😩 And then I had to keep standing up while working at my till today as I was so uncomfortable.

I worked until 4pm and then I had a bit of food shopping to get. By the time I got back it was just about time for me to leave again to get to the doctor’s surgery. I had an appointment with the nurse to get my blood taken so that my uric acid level could be checked again. 

You really must have a look at these great pictures in Giving Life. I find it quite amazing really to think that I was led in an operating theatre like that, being monitored, cut open, a part of my actual body I was born with being cut out, having my amazing organ donor’s liver put inside me, stapling me back together – all those people saving my life.  I would have loved to have had the opportunity of having photos like that taken of me so that I could look at them now. Even better, I would have loved to have had my operations filmed so that I could watch them back. Fascinating!

And now for something nice to end on – I knew it, chocolate cake really IS good for me. Now I have a good excuse for eating this 😋