Monthly Archives: September 2016

PBC Day

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Saturday 10th to Sunday 11th September

I had our local PBC group meeting to attend today. I still didn’t feel too great but I made the effort to go. I was only able to eat a few mouthfuls of the buffet lunch Trixie (the organiser) had prepared for us all. I wasn’t really ‘with it’ but it was nice to meet up with the group again. None of the other members are anywhere near the transplant stage with their own PBC journeys. They all seem to be reasonably ‘well’ at the minute, mainly suffering with itch sometimes and tiredness. So I do actually feel a bit ‘different’ to all of them. Trust me to get so much more severely affected by it 😏

When I got back I picked Gary up and we called down to Julie’s for a cup of tea and spent a bit of time with them.

Then an evening spent watching the Paralympics which I loved to watch, and later on the boxing. I have mixed feelings when I watch this, I hate to see it when the boxer is getting smacked about really badly and is cut or almost knocked out and staggering about, but I seem to have to keep watching to see what happens in the end 😳

I think this must have been a particularly interesting fight as I can remember that I actually stopped my blogging to watch!

Now here is something that I really would love to be able to do! Afternoon tea tasting πŸ˜‹ like Little Miss Katy has done here.

I would like to give the ‘cool afternoon tea’ a try, but I do think the ‘classic afternoon tea’ would still be my favourite.

Have a look at this lovely idea. If only all nursing homes could be more like this one.

Sunday. International PBC Day:Movement as Medicine.

To celebrate this the PBC Foundation were asking for photos to be sent in showing how people were being active! What was I going to do today to take part?

So I walked into town with Gary and we met up with all the others for a bit of lunch. Well I actually had a cooked breakfast!

They all went off to do their own things so I walked back to Gary’s and as it was a nice afternoon decided to clean the inside of my car 😱

A bit later in the afternoon Gary decided he wanted to go out for a drive and we ended up at the nearby Rollright Stones. Sunny but cold. Brrr!

And that was my active day πŸ€—

And finally! Why not have a read about Richard Branson’s thoughts on organ donation.

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Ripping paper πŸ˜–

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Thursday 8th to Friday 9th September

Volunteer day.

What do you think about this new trend ‘doughnut walls’ then?

So ‘the walkers’ went for a meal in a local pub this evening as a change from our usual walks. It was veggie chilli for me 😬

This photo of the partially completed Queensferry Crossing @NewForthBridge in Scotland for some reason caught my eye! I like some bizarre things I know!

Friday morning, I hadn’t had much sleep as it was and so the last thing I really wanted was to be woken early by the noise of Robyn ripping paper in her bedroom! She had got up early to do some packing before work!

And I felt ill. I had an upset tummy and felt sick. (It did cross my mind that maybe it was from the food last night? 😏) Anyway I made an effort and got ready for work, but I can tell you it was certainly a big effort. I probably shouldn’t really have gone in the first place. I tried my best but I just didn’t feel well at all. I stuck at it for about 2 hours but then I just had to leave work early :/

Eventually I did a bit of pottering around but I just couldn’t do too much for the rest of the day.

As its Organ Donation week, the Leeds Teaching Hospitals NHS Trust published ‘a snapshot of the work their transplant and organ donation teams have done this year’

And also ‘the winning patient experience poster showing the transplant journey by the Liver Transplant Coordinators’

Both very good πŸ™‚

Lunch with Leah

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Monday 5th to Wednesday 7th September

It’s Organ Donation Week – 5th to 11th September.


So on Monday we were in the local newspaper again! helping to promote organ donation. (They used a bit of an awful picture though 😱 If I can remember correctly it was taken pretty early in the morning and not many months after my transplants, so that’s my excuse for my puffy face!)

Leah had a few days off from work this week. The aim was to try and get some jobs and packing done ready for our house move. 

This afternoon we had a meeting in the Halifax building society in Banbury. We needed to sort out an old child’s account that Leah still had (and which we have been meaning to do for literally years!)

And then as it was a Monday of course I had to have a visit to Costa with Robyn, and this time also Leah was able to come. Oh, they both seemed to be so thrilled with that πŸ™„

How about this for a good idea? Go ahead and get your tattoos! πŸ€”

Tuesday. A day to be spent with Leah for a change 😬 We did some jobs at home in the morning and then Leah needed to have a trip into a place in Witney so they could give her some advice about the broken camera on her iPad. So off I went too. We also donated a bag to the charity shop there, did a tiny bit of food shopping, paid a visit to yet another building society and then – had a very delicious lunch together.

Homemade chilli and chips for me and a slightly more healthy jacket potato with salad for Leah πŸ˜‹

I was also able to take my ‘high protein’ liquid sachets (which I had to add to drinks to try and help build me up) to the pharmacy for them to destroy as I don’t need to use them anymore. Well I haven’t for a while actually, they have just been sat in a cupboard. That was a very good feeling I must say πŸ˜ƒ I always did my best to avoid using them anyway!

In the evening it was time for a walk. Yes I know it’s only Tuesday but us ‘walkers’ were going out on Thursday for some food so we changed the day so we could still get a walk in as well! But maybe I shouldn’t really have gone – as I fell over! 😫 No damage was done thankfully. My family thought it was highly hilarious though when I got back and told them what had happened. Meanies!

Wednesday was just a work day.

I have seen many clever things in the past that have been made from Lego, but I do think this is probably one of the most unusual – Lego leg πŸ˜€

Tired 😲

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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 πŸ”₯ live over the Internet! but I didn’t realise all these other things were going on too πŸ™ƒ

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 πŸ˜– Thankfully she was lucky enough to be able to have her ownΒ 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 πŸ˜‹

Here’s just another reason why we always need as many people as we can to sign the Organ Donor Register. TheseΒ 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 😏

Confused πŸ€”

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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 β˜€οΈ 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! πŸ€—

The Big Feastival β›ˆπŸπŸŽ€πŸ’ƒ

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Saturday 27th to Sunday 28th August

This weekend I was off to Jamie Oliver and Alex James’ The Big Feastival πŸ˜ƒ 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 πŸ€—

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 β›ˆβ›ˆβ›ˆ 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 πŸ˜–

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 πŸ˜‹ 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 πŸ˜€

(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! 😀)

Sunflowers 🌻

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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 πŸ˜€ 

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 πŸ˜€

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 πŸ˜€ 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.

What? 😱

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Monday 22nd to Wednesday 24th August

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

Robyn drove πŸš™ 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 πŸ€—


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 πŸ˜‚ 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! –Β Gifted Organs. If you click on this link you can watch a couple of their videos πŸ˜€

Potatoes

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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 πŸ™‚

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 πŸ˜‚ I love putting the things in the various skips for recycling – cardboard, metal, rubble, small electricals etc. I guess it’s a type ofΒ Life Laundry.Β 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? πŸ™ƒ

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!